Cancer Support and Caregivers Who Are Trail Blazers!

[Andrew, Jr.]

I want to start a thread that is a support for those who are suffering from any kind of cancer. It also is for those who are caregivers to those suffering from cancer.

I want this to be a safe place to talk openly about diagnoses, treatment plans, medicines, drugs, and everything else imaginable.

My life has drastically changed with the loss of my beloved sister, JoAnn last year. She had skin cancer, called Melanoma. So I am aware of projectile vomiting, fevers, chills, and every side effect of chemo under the sun. JoAnn never complained - not even once.

So, with that said. Please feel free to post.

Namaste,
Andrew

[SuperFemme]

I complain all the time. When I get the fever I talk mad crazy shit to the people I love the most.

Without them, I'd be a bigger mess.

[Andrew, Jr.]

Jo would talk like that as well. And she hallucinated when she was given stem cell treatments the most. The combination of drugs just didn't work for her. It was wayyy to much for her body to take.

I was walking around taking a break while the nurses were changing her sheets one day, and I happened upon a lady suffering from breast cancer. She had the kind that didn't show up on the mammograms or anything. I cannot think of the name of it. It is the most deadly of all breast cancers.

Anyway, she was walking with her IV, and just had to get out of her room and away from her family. She told me that after a while they grated on her nerves. That they meant well, but after some time, they got to be too much for her to deal with. Now she was just starting out, and only had 1 surgery, and was just having her first chemo treatment. I thought to myself, and didn't say it, but man she has a very long way to go. Sad part was...she was in her late 30's to early 40's.

[SuperFemme]

Inflamatory Breast Cancer or IBC is horrid.

I feel for the woman as there are certain factions of my family that gush and coo over me when I am sick. I somehow end up feeling responsible for their emotional turmoil.

My inner circle is very stern with me, and treats me as if I was healthy as much as they can. Thank god.

[Andrew, Jr.]

I really believe that is what saved Jo for as long as it did - almost 3 years. We all treated her like she had a splinter. The little kids were the ones who didn't understand why she lost her hair, or why she would try to eat a meal at the table with us, then run to the bathroom, or would spend hours cleaning out closets to keep busy because the meds made her hyperactive.

Jo was active up to the last week of her life. She mentioned to her husband that steps were hard for her to do, and the next day she had a series of strokes that took her voice. All she could do is moan and groan.

Everyone handles devistating news differently. Some are able to deal with it, and move on. Others fear the unknown. I just pray to do God's Will, and let His Will be done, not mine. My Will - He knows what it is.

[Andrew, Jr.]

We all know Suzanne Somers' from her jewelry, beauty products, sunglasses, bags, and exercise equipment like the ab roller. And then the 17 books, 8 of which are NYTimes bestsellers.

She has fought most recently her cystic breast disease that became breast cancer according to her latest book. She refused chemo, and even went to the extreme of stating that chemo is what took Patrick Swaze's (sp?) life. I am on the fence about this one. Why? I have seen first hand what chemo does to people first hand. There has to be other methods of care and treatment of cancer like Farrah Faucett (anal cancer) voiced.

Namaste,
Andrew

[Andrew, Jr.]

The latest mammogram news...bullshit. Where do these people come up with the idea of women waiting until 50 yo to get mammograms?! :rant: And we all know that insurance carriers will deny anyone who puts in a claim to one. :censor: It all boils down to money. :furious::explode::annoyed:

[Vlasta]

The latest mammogram news...bullshit. Where do these people come up with the idea of women waiting until 50 yo to get mammograms?! :rant: And we all know that insurance carriers will deny anyone who puts in a claim to one. :censor: It all boils down to money. :furious::explode::annoyed:

yep Andrew ... it's BS and it's about the money ... and it's scary .

[Andrew, Jr.]

Why was this news released while President Obama was in China? I find that quite interesting.

[Daryn]

Right now I am waiting for the results of my latest pap. I had an abnormal result last July. So this is the recheck. And along with the abnormal cells came a positive for HPV. So I am really kind of freaking out. I am scared. And I am wondering if the worst happens how the heck I will get through this thing alone. I have to wait about 2 weeks and then the latest results will be in.

[Andrew, Jr.]

Daryn,

Keep us posted on how you are doing. I will be including you in my prayers.

Namaste,
Andrew

[SuperFemme]

Right now I am waiting for the results of my latest pap. I had an abnormal result last July. So this is the recheck. And along with the abnormal cells came a positive for HPV. So I am really kind of freaking out. I am scared. And I am wondering if the worst happens how the heck I will get through this thing alone. I have to wait about 2 weeks and then the latest results will be in.

The waiting is the hardest part.
Just try to think positive...lots of test come back positive for lots of reasons that are not the big C.
Try not to panic. (((Daryn)))

[Andrew, Jr.]

I just heard on the radio that Michael C. Hall of HBO's "6 Feet Under" as David Fischer, and "Dexter" as Dexter Morgan, has Hodgkin's Lymphoma. He apparently is being treated for this with chemo, etc. I hope he is ok.

[fiercegrrl]

i'm 26 and over the past few days i've found out that i most likely have ovarian cancer. i meet with an oncologist team in a couple of days. and i know that major surgery will be happening as soon as possible. until they get the tumor(s) out i won't know if it's cancer. but i'll be losing my reproductive organs and possible part of my intestines in the process.
i'm so scared and nervous.

[Andrew, Jr.]

Dear Fiercegirrl,

I understand your fears, pain, and everything else. I have been thru this twice with my late sister, Jo, and my Godfather. Cancer sucks. I also had cervical cancer, but no doctor would do anything until I was opened up. Then all hell broke loose. Everything I said made sense - finally. Sometimes you have to talk and talk and talk, and get 2nd, 3rd, and 4th opinions until you can slay that dragon.

If I can be of any support, please let me know.

You are in my prayers.

Love,
Andrew

[Daryn]

My latest results are back and this test is normal. I am so thankful.

[Andrew, Jr.]

Daryn,

WOOHOO!!

CONGRATULATIONS!

[Andrew, Jr.]

Dear Fiercegirrl,

I am so happy with the results. Please rest. All in time. We will chat later on.

Love,
Andrew

[Tommi]

Dear Fiercegirrl,

I understand your fears, pain, and everything else. I have been thru this twice with my late sister, Jo, and my Godfather. Cancer sucks. I also had cervical cancer, but no doctor would do anything until I was opened up. Then all hell broke loose. Everything I said made sense - finally. Sometimes you have to talk and talk and talk, and get 2nd, 3rd, and 4th opinions until you can slay that dragon.

If I can be of any support, please let me know.

You are in my prayers.

Love,
Andrew

i'm 26 and over the past few days i've found out that i most likely have ovarian cancer. i meet with an oncologist team in a couple of days. and i know that major surgery will be happening as soon as possible. until they get the tumor(s) out i won't know if it's cancer. but i'll be losing my reproductive organs and possible part of my intestines in the process.
i'm so scared and nervous.

Staying in touch with each other is a good thing. When it seems like you are all alone..then bing.."You have Mail"...

come back when you can and be fierce..

Tommi :hockey:

[Spirit Dancer]

I want to start a thread that is a support for those who are suffering from any kind of cancer. It also is for those who are caregivers to those suffering from cancer.

I want this to be a safe place to talk openly about diagnoses, treatment plans, medicines, drugs, and everything else imaginable.

My life has drastically changed with the loss of my beloved sister, JoAnn last year. She had skin cancer, called Melanoma. So I am aware of projectile vomiting, fevers, chills, and every side effect of chemo under the sun. JoAnn never complained - not even once.

So, with that said. Please feel free to post.

Namaste,
Andrew

Thank you Andrew for starting this thread:goodpost:
As a caregiver I want to post and to enlighten those who've never dealt with Cancer or any other long term chronic illness.
Your caregiver is the one who, gets every imaginable throwback, the happy days, sad days, angry days,
the I don't want to go on days and the days.
The days with good news, bad news and no news.
If there is a change we are there, we clean and cook,
we bathe and care for our loved ones.
Out of love, we are there.
We allow them to shed tears even when we hide our own,
we laugh, we share and in the most heart breaking cases
we watch them cross over.

We are tired, worn out sleep deprived but we march on.
They depend on us, for we are their Nurses, their Pharmacy, their Cooks, their Transporters and their advocate,
we get things done when they cannot. They trust us and confide in us
and we stay strong for them, giving them encouragement even on the darkest days.
Not every Cancer patient has multiple caregivers,
so when people think that caregiver is short, or curt, flighty, in a hurry.
Give some consideration they might be on day three, with only six hours of sleep, in 72 hours and multitasking to no end just to make sure their loved ones get the care they so richly deserve.

[IttyBittyFem]

Thank you Andrew for opening this Thread.

So many of us, just from the Planet, have been effected by Cancer. Either had/has it and/or are Caregivers to loved ones that are going through it.

I've been on both sides of the Fence and currently, my Mom's Caregiver. I now realize that each case is unique and each person reacts differently.

Having Cancer certainly is no picnic, but it's YOU that has it, so it's a bit easier to go through.

When you're the Caregiver, it seems more torturous to me. I want to take on the physical reactions, I would rather have my own hair fall out then theirs, I'd rather be the one that needs to force the food down, etc. It's just excruciating to sit by, feeling totally helpless, watching your loved one travel through the journey you're so familiar with.

Sometimes I wonder - which is worse.

[IttyBittyFem]

My latest results are back and this test is normal. I am so thankful.

Just WONDERFUL news Daryn. . Congratulations! . Thanks for sharing with us.

[sweetcali]

I have Stage 4 non-small cell lung cancer and am currently under the care of hospice. I have found this to be a seriously bizarre journey. What I have found most bizarre is that people already have me dead. :| They will ask Mike how I am doing but they don't ask me. There were only 2 people that would call and check in on me when I was going through chemo the rest got angry because apparently I wasn't communicating enough. The whole journey is just weird. I find it really odd that they got angry with me when I was undergoing chemo treatment and I couldn't put 2 words together let alone type. Yet they were angry with me for not communicating. :| Ummmm...hello.....you try having every cell in your body killed off, drugs shoved into your body, swell up like a balloon and then then try to act as if everything is just fine. LOL It ain't gonna happen.

The whole thing is just bizarre.

sweetcali

[Spirit Dancer]

All i can say is that is so wrong (((((((((cali)))))))))))and it happens entierly too much.



I have Stage 4 non-small cell lung cancer and am currently under the care of hospice. I have found this to be a seriously bizarre journey. What I have found most bizarre is that people already have me dead. :| They will ask Mike how I am doing but they don't ask me. There were only 2 people that would call and check in on me when I was going through chemo the rest got angry because apparently I wasn't communicating enough. The whole journey is just weird. I find it really odd that they got angry with me when I was undergoing chemo treatment and I couldn't put 2 words together let alone type. Yet they were angry with me for not communicating. :| Ummmm...hello.....you try having every cell in your body killed off, drugs shoved into your body, swell up like a balloon and then then try to act as if everything is just fine. LOL It ain't gonna happen.

The whole thing is just bizarre.

sweetcali

[Andrew, Jr.]

I think the problem is fear. Alot of people just don't know what to say or do around those who have cancer. You get alot of talk, but no action. Some well-meaning people really do want to do something but are so afraid. The cancer scares them. It changes everything about your life.

I did receive a note from Fiercefemme. The news is not good. She has a rare form of cancer. It has spread. She is starting on chemo. She asks for everyone to pray for her, and her family. I told her I would pass the word on.

I wish everyone peace. :cowboy:

Namaste,
Andrew

[fiercegrrl]

I think the problem is fear. Alot of people just don't know what to say or do around those who have cancer. You get alot of talk, but no action. Some well-meaning people really do want to do something but are so afraid. The cancer scares them. It changes everything about your life.

I did receive a note from Fiercefemme. The news is not good. She has a rare form of cancer. It has spread. She is starting on chemo. She asks for everyone to pray for her, and her family. I told her I would pass the word on.

I wish everyone peace. :cowboy:

Namaste,
Andrew

hi to anyone following this thread.
i do have a rare cancer in that i shouldn't be affected with it for a good 40 years from now. i have a form of ovarian cancer that usually affect women in their 40s-60s. my doctor is baffled as to why i, at 26, have ended up with it.
i am incredibly lucky though and there was an angel in the form of a GYN i saw at sliding scale clinich (that mostly works with the LGBTQ community) who called in favors and got me a fantastic doctor and my medical care is being covered (i am uninsured). i owe her thank yous every day.
because if much time had to had been taken to find health care all of the 100's of small tumors that are on the surfaces of my small.large intestine, colon, and diaphram they would be IN those organs and i probably wouldn't have much hope for recovery much less survival. but i'm lucky and they are still on surfaces so i'm trying to focus on that.
and my doctor thinks that since i and young and otherwise healthy that i will fight this. i just might have to fight it many time over my life span.
not what i asked for from life. but i don't have many options but to be fierce and deal with it.

-nicole

[Andrew, Jr.]

Nicole, :bunchflowers:

You are a fighter. I am praying for you. God bless you, and your family.

Love,
Andrew

[Andrew, Jr.]

How is everyone doing?

Andrew :caddyshack:

[Tommi]

How is everyone doing?

Andrew :caddyshack:


Andrew,
After a tough couple of months, and DustyBoy Kitty passing through on May 1st, I realized how time flies
I celebrated 6 years of being cancer free on May 15. Endometrial cancer diagnosis shook my world and it felt like the air was sucked out of the universe. After radical total hysterectomy, and 16 lymph nodes removed, i did well UNTIL...I got a massive infection that almost killed me.

I live every day to the fullest, and love like there is no tomorrow..Thanks for all the love and positive energy.

Tommi

[suebee]

Andrew,
After a tough couple of months, and DustyBoy Kitty passing through on May 1st, I realized how time flies
I celebrated 6 years of being cancer free on May 15. Endometrial cancer diagnosis shook my world and it felt like the air was sucked out of the universe. After radical total hysterectomy, and 16 lymph nodes removed, i did well UNTIL...I got a massive infection that almost killed me.

I live every day to the fullest, and love like there is no tomorrow..Thanks for all the love and positive energy.

Tommi

Another rose bush Tommi! My second anniversary is coming up soon. It's a good feeling, isn't it?

Prayers and hugs to all those fighting the fight.

Sue :bouquet:

[Tommi]

Another rose bush Tommi! My second anniversary is coming up soon. It's a good feeling, isn't it?

Prayers and hugs to all those fighting the fight.

Sue :bouquet:
soon:rrose::rrose: for you.
WOW..It is a good feeling to be know we will celebrate 2 for you soon. See, it has been fast. i remember you posting way back when.

Plant a beautiful rose bush wherever you are, cybersubee. It is a good feeling to stop and touch the flowers. I am having some friends over, and I will plant my 6th in the front yard this weekend. I took huge roses from my yard to work on Monday.

My private celebration, to stop and smell the roses.

Love to all who carry the torch for those who no longer can.


Tommi

[Andrew, Jr.]

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet. :bbq::wine:

Andrew

[sweetcali]

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet. :bbq::wine:

Andrew



I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

[fiercegrrl]

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali


carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

[SuperFemme]

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet. :bbq::wine:

Andrew



If I were you I'd make sure to get a second opinion Andrew.

It is kind of unethical for a doctor to tell you that you have cancer before the biopsy results are in, don't you think? It is unconscionable to have you this stressed out withOUT results!

That would worry me a LOT! I know everyone is praying for you to have a good outcome.

We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see.

If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

[Tommi]

Andrew, I wanted to say thanks for this thread. Thanks for a place we can come to and talk among those who understand this journey

And for those taking care of us, a place to seek and rest among friends. Any time of the day or night call out, someone is near by.

sweetcali,
My Mom loved peanut butter N jelly sandwiches, chased with coffee flavored milk shakes. They now have frozen,I think it's Smucker's Pnt btr and grape jelly..Wishing you well this Sat. AM from So Cal. If you were closer I'd bring you some stuffed French Toast from Mimi's.

"and maybe fiercegrrl could bring you a joint to give you the munchies".:bouquet:

Andrew, ride hard and be prepared. I know you have been here before dear friend..:knighthorse: Candles of hope for you and you are in my prayers....Tommi
If I were you I'd make sure to get a second opinion Andrew.. ...We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see. If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

Great advice SuperFemme,
I canceled surgery a day before I was to scheduled for a total radical hyster for uterine cancer. I had done the autologinous blood transfusions for 6 weeks at the Red Cross and my blood was waiting at the hospital for me.

I asked the Doc if she had the results from my CT Scan, because my one kidney looked enlarged on the ultrasound..She said no, but if I see anything when I'm in there, we'll take care of it!!!there is always a general surgeon in the OR. STOP>>>I asked if maybe an MRI should be done prior to surgery. She said no, we can "always" remove your kidney...ALWAYS...cause I have 2?

Went to a Gyn/Onchologist, who did total workup on me, including the MRI, bone scan, liver scan, lung scan, etc , prior to OR..and saw I had some lymph nodes that were swollen, and 16 had to come out.BUT all was known, ahead of time.

[Tommi]

I have Stage 4 non-small cell lung cancer and am currently under the care of hospice. I have found this to be a seriously bizarre journey. What I have found most bizarre is that people already have me dead. :| They will ask Mike how I am doing but they don't ask me. There were only 2 people that would call and check in on me when I was going through chemo the rest got angry because apparently I wasn't communicating enough. The whole journey is just weird. I find it really odd that they got angry with me when I was undergoing chemo treatment and I couldn't put 2 words together let alone type. Yet they were angry with me for not communicating. :| Ummmm...hello.....you try having every cell in your body killed off, drugs shoved into your body, swell up like a balloon and then then try to act as if everything is just fine. LOL It ain't gonna happen.

The whole thing is just bizarre.

sweetcali
Post chemo :chemist:
Get 2 paper plates. Glue a tongue depressor, or a couple of banana popsicle sticks.:) on each. Put a happy face on one side, and a sleepy face on the other. Trace your fist with middle finger extended on the other plate, and a bigger smile on the other side..:mobilewheelchair:
banana popsicles always make me feel better

[PearlsNLace]

Andrew, is there anything that we can do for you, here on the Planet, to help you through this time?

When I had my lump removed a couple years back, it was humor that kept me going, and a whole lot of PMs.

THinking of you today, and this week.


PnL

[waxnrope]

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

sorry, sweetcali, I meant to quote and not thank you inappropriately. I'd like to offer suggestions, but have questions before making assumptions. Is that ok?
Do you have appetite?
how is your energy level?
are you sleeping ok?
are you trying to do the traditional three meals a day?
what confused you about the protein shakes? is it hard to concentrate?

Perhaps I should PM you ... that is how I usually communicate with people here. Is that ok with you?

[waxnrope]

I will be going to Switzerland in about a month ... if all goes well ... to be with the last of my immediate family, my sister. I can only go for a week because it is all the time that I can take off from work.

My sister, Dolores, was diagnosed with an aggressive lung cancer which I learned about the in April, and has lived there, in Switzerland, with her husband for a couple of years. They have good health care there, albeit, slow, and from what I can ascertain, the various specialist do not communicate well with one another. I have been doing the arm chair quarterbacking of her care from afar. I hope that by my going this time I will be able to establish firm contact with at least the oncologist so that I have email communication with her on a fairly regular basis. We have "fired" her primary care doctor, the "professor" who is dismissive and unresponsive.

My sister gets confused about all that is going on: she was having palpitations and her PMD did not think to do a simple EKG. I told her to ask for one, and it turns out that she had a significant irregularity that required medications for the rhythm as well as a blood thinner to prevent clot formation and subsequent stroke. There were complications from this in which I had to intervene/interfere. Thus, we fired the bastard.

I initially planned on going in the fall/September, but she wants me now, during the next cycle of her chemo and when she will begin radiation therapy.

While this does not place me as the usual "caregiver" (her husband is that), I am the one she turns to for help in navigating the tangled webs of western medicine. So, in that fashion, I am a caregiver. If/when her condition worsens, I suspect that I will be there for a longer spell and providing her husband with some respite.

I cannot utter that which lays like a stone in my soul about how I feel about my "big" sister having this cancer. I don't know what to say when she says, "I don't know what to do" ... meaning, about dying. We have started the conversation, as a suggestion by a friend of mine, about a bucket list. We've begun the stories of mom anew (she was a medical "miracle" in that she had 3 separate cancers and lived 3 1/2 years beyond her "six months" prediction) ... and have started the laughter in the telling of such tales.

There is someone, on this site, knowledgeable about cancer research. She has helped me as I am trying to stay one step ahead of the "natural history" of my sister's cancer (if and when the treatment fails). She has been supportive and kind.

As for me, selfishly, I feel at times abandoned and homeless, in an odd sense. I have been writing when I can face it. The pen is my therapist. Metaphors are my life. My new love keeps me from drowning.

Thanks for reading/"listening"

[Oiler41]

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

[SuperFemme]

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes. :harley:

[Andrew, Jr.]

Superfemme,

I have had 3 and 4 opinions on this. I have had blood tests run (ca125 and other labs), mammograms/sonograms, you name it - I think I have had it. I am going to the largest breast cancer center on the East Coast. I trust them.

There are doctors who I don't trust, and who leave me with a bad taste in my mouth. How they got their license is beyond my understanding. And trust me, I will never set foot in Johns Hopkins ever again. Not only for how they treated me as a transman, but how they neglected my sister with her cancer. Enough about that.

Thank you for your love and support. I appreciate it.

Waxnrope,

Talk to your sister NOW. Tell her what is in your heart. Tell her you love her. Tell her your dreams, your hopes, your loves, your losses. Don't wait a second more. Help her to die with dignity. I had to help my sister to die. It was by far the hardest thing on earth I ever did. Everything from writing letters to her 2 young sons who couldn't grasp what cancer is or what it was, to planning her funeral, to talking about the afterlife, to reading to her, to helping her pick tomatoes from a vine I planted for her in a small tub. I have such wonderful memories of her. I also remember holding her head while she was getting sick, her hair loss...it is just heartbreaking. So I know what is going thru your mind. Be with her, and don't be afraid to share your soul with her. She needs it just as much as you do.

SweetCali,

Try eating fruit shakes with real fruit. They are good. Or even ice cream floats. :clap: I love those, but they put on the pounds for me because I like whipped cream. If it is fattening I love it. And I'm diabetic, so I have to watch what I eat. There is a website from NIH that is from their nuitritional group. I am not sure of what it is called diet something or another. Try doing a search there, and maybe you can get some ideas.

Hospice is awesome. I know I had a bunch of angels helping out with my sister. They were just the best. Always knowing what to do, when to do it, and how to make everything flow. There were some days that were harder than others, but for the most part, I would recommend hospice to anyone.

Tommi,

Thank you my brother. You always are so kind to me. I just adore you!

PearlsnLace,

Humor always keeps me going. I love to get pms that are like that. The more the merrier. Thank you. I appreciate you thinking of this for me! How sweet of you!

Drew :farmer: :bingo:

[sweetcali]

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

Thank you!!!

sorry, sweetcali, I meant to quote and not thank you inappropriately. I'd like to offer suggestions, but have questions before making assumptions. Is that ok?
Do you have appetite?
how is your energy level?
are you sleeping ok?
are you trying to do the traditional three meals a day?
what confused you about the protein shakes? is it hard to concentrate?

Perhaps I should PM you ... that is how I usually communicate with people here. Is that ok with you?

Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

[waxnrope]

Thank you!!!



Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

Thank you for responding, Sweetcali ....

see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...

[sweetcali]

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

Thank you oiler. I can talk about misdiagnosis for days. They misdiagnosed me for a very long time. They put me in the automatic menopausal depressed hormonal group. Until I went to the ER for a swollen elbow and ended up leaving there knowing I had a mass in my lung. So yup I get the misdiagnoses game.

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes. :harley:

YAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I miss you bubbledoodles!!!


Thank you for responding, Sweetcali ....

see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...


Thank you waxnrope I really appreciate it. When I was going through the second Tier Chemo they gave me B12 shots. I take b12 vitamins now; maybe I will ask them if I can get a shot.

sweetcali

[Lady Pamela]

Andrew...First of all, I want to thank you for creating such an empowering and supportive thread.

Next...To all those going through such a challenge or taking care of someone who is:

My heart goes out to you and your families.


A little bit about my experience with cancer:

Cancer has struck my family in many areas.
I lost my Aunt from cancer in her entire body when I was young.
I lost my Father 1 1/2 years ago from Melanoma.

My daughter got pragnant at 14..I know yikes! But during her pragnancy the doctors found cervical cancer...She had to carry and deliver the baby before treatment...Which was quite scarey. I am happy to inform that they removed and treated her after and she is free and clear to this date and she is now 30.

As for myself,
I seen doctor after doctor to find out why I was so ill and why I hurt so badly. I was so sick I was making dinner from the couch for my children on a hot plate. Cooking in the fireplace to make things fun. I had written good by letters to all my children in the event I passed. It was horrible to endure.
2 years into the pain I finally found a decent doctor who went in to look. They found all my female organs, including tubes and cervix had cancer cells. Of course they were removed. And that was 18 years ago and I am happy to say....I am still cancer free!


What I would say to everyone is use your supports you have..That is your biggest key. I am so proud of all of you who are or have faught and struggled through this horrible challenge. And I want you to know I will truely be here if you need an ear...Or simply a laugh!

Surround yourself in as much laughter and posotive light as possible.
It makes the healing and process from both sides so much easier.

Namaste

[Sachita]

My 33 year old niece had surgery on Wed. They removed one large tumor and several smaller behind that didn't show up on ultrasound. They also noticed some white spots on various organs. She is home waiting for pathology reports. It's been hard to sleep for all of us. I'm so tired and trying to keep pushing forward with so much to do. Things like this effect a family on so many levels. The extra money I thought I was saving for repairs now goes to help my sister. Don't get me wrong I am soooo very grateful I can.

Have you heard of this guy?

https://www.herbdoc.com/index.php?option=com_content&task=view&id=17&Itemid=38&cid=42

He's been around for years and had a lot of media attention as well as lawsuit, I think from FDA. His incurables program actually cured terminally ill people. I'm sure dietary changes were also added.

This past year my health wasn't good and even the past few months felt pain and fluttering in my heart. I was super tired all the time and even my moods were funky. I was desperate because to be honest I probably wouldnt go to a doctor. Thats just me. Just changing a few things made a huge difference and slowly I'm getting stronger and stronger.

The shit in the water, in our food supply and all these fucking pharmaceuticals are killing people. It's a very sore spot with me. Dec I will be a grandmother and I'm trying to figure out ways to work and care for my grandchild rather then daycare and hopefully instill things he/she will need to be healthy. I talk to my son's GF about things but then I see her current little 4 year old living on french fries and chicken mcnuggets washed down with koolaid or mountain doo . drives me nuts

[Spirit Dancer]

Today as we sit and hear the doctors making rounds,
the picture on the wall says


What cancer cannot do...

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot destroy peace.
It cannot silence courage.
It cannot suppress memories.
It cannot kill friendship.
It cannot erode the spirit.
It cannot conquer the soul.

[Spirit Dancer]

I have Stage 4 non-small cell lung cancer and am currently under the care of hospice. I have found this to be a seriously bizarre journey. What I have found most bizarre is that people already have me dead. :| They will ask Mike how I am doing but they don't ask me. There were only 2 people that would call and check in on me when I was going through chemo the rest got angry because apparently I wasn't communicating enough. The whole journey is just weird. I find it really odd that they got angry with me when I was undergoing chemo treatment and I couldn't put 2 words together let alone type. Yet they were angry with me for not communicating. :| Ummmm...hello.....you try having every cell in your body killed off, drugs shoved into your body, swell up like a balloon and then then try to act as if everything is just fine. LOL It ain't gonna happen.

The whole thing is just bizarre.


sweetcali


Sweet Cali
I highlighted in red, exactly what we are going through, My heart goes out to you and all the others who are suffering and fighting this battle. At times it seems as if the loved one and caregiver are fighting alone. Its tough when your friends cannot fathom how very taxing Chemo and Steroids are on you.
It takes only a minute to phone and say I thought of you today.
So today I want you to know I thought of you and the others who grace this thread and silently said a prayer.

[fiercegrrl]

i am having surgery this week as well. another massive incision and a few days in the hospital.
this time around there is not going to be the constant help of my mom. not since she decided it was ok to steal most off my pain killers, anxiety and sleeping meds.
so my poor brain that's like swiss cheese these days is trying to play a strategic game of who can come be with me in the hospital and when and for how many hours. it's surprising to me that my friends are actually saying they can't help because they have already made plans. everyone always tells me to let them know when i need help. and when i finally work myself up to actually asking for it i hear no. and people wonder why i resist asking for help.
and to top off the fun of surgery my next round of chemo will be probably be administered while im in the hospital. that's just adding insult to injury.

when all this is done i want a fucking vacation. i want a hotel room with 1000 thread count sheets, a chocolate on my pillow every night, and a view of the ocean.

*sigh*

[Tommi]

5:30 AM Monday. I isolated this weekend, and I know it. Thank you Andrew for a place to visit.

The weekend is over, and I should be getting ready for work. The mail with that envelope from my Dr. arrived.. the results of my latest tests on May 13th at the Gyn/Onchologist arrived Friday, and it lays, still unopened on kitchen table. Is it okay. Do I need further tests? It's the unknown in a white envelope as big as an elephant in the room. It really is just an envelope on the kitchen table. They would have called, wouldn't they? Endometrial cance was Six years ago, I got the tests and the results monthy for the first year, then every 6 months, and after the 5th year, I just go annually. So why is one stinkin' envelope too tough to open?

We have a common bond on this Planet earth-you and I, and I am glad to be here with you. :heartbeat:

It's Monday. In the pre-dawn hours I awoke and I thought of sweetcali and what she is going to have for breakfast, Andrew with surgery pending and that stinkin' unknown, and Sachita's niece who just underwent her surgery and waiting on tha stinkin' diagnosis of the unknown, and fiercegrrrrrl, and SuperFemme, and cybersubee, Lady Pamela and Spirit Dancer's walk among this stinkin' disease and SD's Syr, and PearlsNLace adventures.

Waxnrope , I wish you a smooth journey with your sister, as she may just need ears to listen, eyes to love, and a hand to hold. and ((((hugs))))) to the other's on the list of people linked here by my monitor.

We have a common bond on this Planet earth. and I am glad to be here with you. If you were here we could open the envelope together. I want to stay home, but, alas, I have no chocolate left in the house, so, I'm taking the envelope to work, and going to open it among friends, and have some mocha java.

To those that are new and to those who care for those who can't I say helloo, and welcome, and thanks for stopping by. . We have a common bond on this Planet earth-you and I, and I am glad to be here with you. :heartbeat:

Tommi

[Tommi]

DmhJF7Tj1NU

[waxnrope]

Tommi, I had a vision of sorts while reading your post. In it, all the people who come to this thread, all the people who care about one another, all reached out a hand and touched you .. on the head, the shoulders, the back. And when there were too many people so that some could not touch you (because it is crowded up in here!), they touched somebody who did have a hand on you, and so on, down a long long of folks.
You can feel this in your Spirit, Tommi, if you close your eyes for a sec. It is a mountain's worth of support and love. Now, without breaking contact, open that envelope and know that the hands stay right there ...

[Andrew, Jr.]

The secret of sucess is love. Love is all this life is about. :bbq:

Fiercegrrl, you will be having surgery the same time I am. I think it is destiny for that to happen to all of us. What happens to one happens to all of us. Both of us will be recovering the same time. So you know I will be thinking and praying for you if I remember too. You know I get sleepy on those pain meds - lol.

[suebee]

Just wanted to tell everybody that I'm thinking of you. As much as is possible I'm with you in your journey - wherever on that journey you may be. Hugs and prayers: that surgeries go well, that envelopes hold only continued good news, that a friend can find it in their heart to visit and sit awhile. I'm with you. You have only to close your eyes and you'll find that I'm with you.

Gentle hugs and prayers to you.

Sue

[Andrew, Jr.]

Fiercegrrl,

I understand about people. I have had to do the same when I had my 4 prior surgeries. I actually had someone drop me off at the hospital when I was having my hysterectomy. Yep. At least it was at the front door, and I didn't have to pay for a cab or walk.

Now with this surgery, the surgeon will not operate without someone being there. It is a much different approach. Plus it is a different hospital too.

Remember one day at a time. :bringcoffee:

Love,
Andrew
oxox

[Andrew, Jr.]

Dear Sue,

Thank you for your post. It was so very kind of you to hug and pray for us. God bless you.

Namaste,
Andrew

[Tommi]

Just wanted to tell everybody that I'm thinking of you. As much as is possible I'm with you in your journey - wherever on that journey you may be. Hugs and prayers: that surgeries go well, that envelopes hold only continued good news, that a friend can find it in their heart to visit and sit awhile. I'm with you. You have only to close your eyes and you'll find that I'm with you.

Gentle hugs and prayers to you.

Sue
My Doc says I'm normal..I have peice of paper saying so.

Waxrope, thank you for the bond that ties us together ! Normal. Opened the envelope @ work , and that little 3 X 5 slip of paper in the envelope read normal on all the tests.:drummer:


And Ditto on what cybersubee said above Andrew and fiercegrrll....Wow, what a journey, what a bond.,

and sweetcali, have you had breakfast. How bout some Pnut butter n jelly and chocolate milk
PM if you need anything in the hospital, or at home. I can have pizaa delivered, or maybe chocolate shakes..:eatthebunny:

PM me if you want a phone number and we can talk about the weather. (((XOXO))))).

[Andrew, Jr.]

There are no accidents in life. Everything is done by our Creator. It is a master plan. We all come into each other's lives for a purpose. Destiny is what I call it. Someone once asked me if I minded if they "thread stalked" me. I said no. Go ahead. I have nothing to be ashamed of or to hide. I am what I am. A human being. I have the same DNA as the next guy. This person was shocked. I have no idea of why.

I think in life we have to help each other out. If someone falls down, we have to stop, bend over, and help that person back up. At least that is how I live my life. I am not the kind of person to walk over someone who obviously needs help getting up. It is not only my Christain and Buddist principles but my humanitarian ones that keep my heart in tact. I can go to bed and sleep at night. I don't have to change my name at different sites. I am who I am. :cigar2:

Please pray for both Fiercegrrl and myself. Our surgeries are tomorrow & Thursday. Thanks.

Namaste,
Andrew

[fiercegrrl]

so my surgery did not go as planned on Friday. when my doctors opened ne up there was a lit mire cancer than what the mist recent CT scan showed. so they didn't do much. they got out some bulk but to get me to the point they thought the would before opening me would have put me in the ICU with a chest tube, and breathing tube fir a few days. do they did a bit and closed mr up.
time for a different chemo- mine ain't workin'. I'm still in the hospital- Looks like I'm running a fever tonight. I need to find a new cache of hope and strength that I'll be able to fight this off and at least get a couple of years- I'd like to make it to 30.

[Andrew, Jr.]

Fiercegrrl, (f)

We will chat in private. Publically, I want to acknowledge your strength, determination, and the hope you give to me and others. Thank you.

Much love and peace to you,
Drew
oxox

[SuperFemme]

My platelet count is 21. It should be a lot higher so I am sure a transfusion is coming.

Some days endless sleep feels like a better option than fighting all the time.

[sweetcali]

so my surgery did not go as planned on Friday. when my doctors opened ne up there was a lit mire cancer than what the mist recent CT scan showed. so they didn't do much. they got out some bulk but to get me to the point they thought the would before opening me would have put me in the ICU with a chest tube, and breathing tube fir a few days. do they did a bit and closed mr up.
time for a different chemo- mine ain't workin'. I'm still in the hospital- Looks like I'm running a fever tonight. I need to find a new cache of hope and strength that I'll be able to fight this off and at least get a couple of years- I'd like to make it to 30.

(((((((((((fiercegrrl)))))) I will keep you in my thoughts as we go through this journey. Just know that you are not alone in your battle with the aliens. A lot of us are in it with you. PM me if you need to. In the mean time here is a whooooolllleeeeee lotta love and hugs. Oh OH OH before I forget, I have a lot of nice wigs and hats if you would like them. Just let me know.

My platelet count is 21. It should be a lot higher so I am sure a transfusion is coming.

Some days endless sleep feels like a better option than fighting all the time.

I gots lots of good blood so I can share.

(((((((((bubbledooodles))))))))))

sweetcali

[Tommi]

Hi everyone. Just dropping in, catching up on where and what is going on with everyone and hoping tonight finds you all safe and sound.. (((((((((((Fiercegrrl, sweetcali, SuperFemme, Andrew, cybersubee, Sachita, SD and all)))))))))))

My Peaches the big boy orange cat has learned to count. So far it is just to one, but we are working hard on two.

He raises his paw for one treat. Of course, when he raises it again he gets another One. and another One..I just looked at him ,and said, you are beginning to look like Morris, and ....he raised his paw. One more treat.

Hope tomorrow's sun brings you warmth and healing.(f)

Tommi

[Andrew, Jr.]

Thanks Tommi,

You are such a wonderful friend to me, and many others. (f)

I am out of sorts. Just not myself. I am so grateful for my many friendships here. :candle:

Namaste,
Andrew

[sweetcali]

Thanks Tommi,

You are such a wonderful friend to me, and many others. (f)

I am out of sorts. Just not myself. I apologize if I stepped on anyone's toes lately. :candle:

Namaste,
Andrew


Oh goodness Andrew...That is one of the wonderful side effects of this journey we are on. All those filters you used to have? Say goodbye!!! And learn to have fun with them. LOL

sweetcali

[Andrew, Jr.]

Sweetcali,

You are so right. I agree.

[Andrew, Jr.]

The tumor the surgeon removed last week from my breast was not cancerous. Thank God above. I have a very good chance of getting cancer since I already had cervical cancer, but my mother and grandmother both have/had breast cancer, and my sister is in remission from ovarian cancer. It has been 8 years so far.

The surgeon told me that my chances go up a great deal. I am being used in a study and followed from this point forward. :praying:

I dodged a huge bullet.



:moonstars:

[Tommi]

Thanks Tommi,

You are such a wonderful friend to me, and many others. (f)

I am out of sorts. Just not myself. I am so grateful for my many friendships here. :candle:

Namaste,
Andrew

Oh goodness Andrew...That is one of the wonderful side effects of this journey we are on. All those filters you used to have? Say goodbye!!! And learn to have fun with them. LOL

sweetcali
Yes, sweetcali, life gives you lemons and we want to add it to our water, versus throwing them any longer.
I was the same way, stepping on toes, so I took Salsa:clap:and Two Step lessons. :fastdraq:



The tumor the surgeon removed last week from my breast was not cancerous. Thank God above. I have a very good chance of getting cancer since I already had cervical cancer, but my mother and grandmother both have/had breast cancer, and my sister is in remission from ovarian cancer. It has been 8 years so far.

The surgeon told me that my chances go up a great deal. I am being used in a study and followed from this point forward. :praying:

I dodged a huge bullet.



:moonstars:

Andrew, :stillheart:
Glad to hear the good news. Waiting for the news is scary, so glad that is over. Now as you know, the follow-ups are so important, as you know.:praying:

I signed up for a clinical study too, when I was diagnosed with endometrial ca 6 years ago. My only family history of cancer was my Mom, who had lung cancer after smoking since she was 16.. No relatives on either side of my family for as far back as anyone knew. My Gyn/Onncologist had said they wanted to follow many things, including effects of 2nd hand smoke on non-smokers who were diagnosed with cancer. So, I am now having annual follow-ups, and am free to live every day to the fullest, and thank god for my lucky stars every night.:moonstars:

[WolfyOne]

I sat here and read this thread tonight with tears in my eyes and sadness in my heart. Some of you are new to me and others I have known for years now, but either way, it's painful. I wasn't sure I'd be mentally strong enough to read in here, but something kept pulling me in. Years ago when my mom was diagnosed with cancer, she gave us 6 years to prepare for the inevitable. It wasn't any easier even with those 6 years. She wasn't diagnosed for a year from the time she first started seeing doctors. My mom had lymphoma and I saw glands swell and burst over the last year of her life. I remember sitting every day at the hospital with her. My visits would leave me drained and mentally exhausted. She once asked me why my brothers couldn't understand that all she wanted to do was die. I cried hard that day trying to grasp hold of the situation, but I did understand. I understood she gave us a 6 year warning. She gave us time to spend with her. She lived for her oldest grandchild that she helped raise. I think that's why she lasted so long. It wasn't until all the transfusions and hospital stays that last year that sucked the life out of her. When she stopped eating, I'd bring my niece to the hospital with me to feed her. Seems like she would eat for granddaughter, but only baby food. My niece used to beg my mom to eat for her. I should tell you now, my niece was only 9 or 10 then. When my mom stopped eating, she started getting worse. She had absolutely no strength, but enough of a voice to ask me to sign a DNR for her. It was the hardest choice I ever had to make, but I did what she asked.

Enough story, ok.

To get to my point and what I'm trying to get at is that even if nothing tastes good or you don't feel hungry, please keep putting nourishment in your body. I think it's more or as important as chemo. Never stop eating or drinking. Please push yourself, for you and for those that love you.

[sweetcali]

Andrew, :stillheart:
Glad to hear the good news. Waiting for the news is scary, so glad that is over. Now as you know, the follow-ups are so important, as you know.:praying:

I signed up for a clinical study too, when I was diagnosed with endometrial ca 6 years ago. My only family history of cancer was my Mom, who had lung cancer after smoking since she was 16.. No relatives on either side of my family for as far back as anyone knew. My Gyn/Onncologist had said they wanted to follow many things, including effects of 2nd hand smoke on non-smokers who were diagnosed with cancer. So, I am now having annual follow-ups, and am free to live every day to the fullest, and thank god for my lucky stars every night.:moonstars:[/QUOTE]

Make sure you let them know that 60% of those diagnosed with lung cancer have never smoked. Out of that 60%, 45% have not lived around second hand smoke. 1 out of three women this year will be diagnosed with lung cancer. The least researched and least funded cancer is lung cancer. There is no federal mandated money to study or research lung cancer.

Just a little info you can take with you to your study.

sweetcali

[Spirit Dancer]

Andrew, :stillheart:
Glad to hear the good news. Waiting for the news is scary, so glad that is over. Now as you know, the follow-ups are so important, as you know.:praying:

I signed up for a clinical study too, when I was diagnosed with endometrial ca 6 years ago. My only family history of cancer was my Mom, who had lung cancer after smoking since she was 16.. No relatives on either side of my family for as far back as anyone knew. My Gyn/Onncologist had said they wanted to follow many things, including effects of 2nd hand smoke on non-smokers who were diagnosed with cancer. So, I am now having annual follow-ups, and am free to live every day to the fullest, and thank god for my lucky stars every night.:moonstars:

Make sure you let them know that 60% of those diagnosed with lung cancer have never smoked. Out of that 60%, 45% have not lived around second hand smoke. 1 out of three women this year will be diagnosed with lung cancer. The least researched and least funded cancer is lung cancer. There is no federal mandated money to study or research lung cancer.

Just a little info you can take with you to your study.

sweetcali[/QUOTE]

SweetCali
You are so correct, when we began our journey we also found that
Multiple Myeloma accounted for only 1% of all Cancers and therefore the funding was minuscule.
One cannot help but wonder does lack of funding for research come with the price, since most patients are deemed "terminal" it's not worth spending the money to further research advance medicine or threapies for said cancer's.
We've written letters to congress and pur senators regarding these issues. Although the rsponse was sketchy at best, A We voiced our opinions and will continue to do so. sweetcali sending you light and hope may your day be blessed.

[Andrew, Jr.]

When my sister, Jo, was battling skin cancer at NIH, she dropped weight so fast. In the last 3 years of her life, I know that the chemo and experimental drugs really took a toll on her system. We all tried everything from Ensure or fruit shakes or just frozen fruit pops. Now, Jo was very much into cooking, so she still tried to keep playing tennis, making all efforts to live as if she was ok.

Then when she was at the point of taking stem cells...she got her appitite back. In fact, she loved to go to McDonald's for breakfast. She loved their coffee, and english muffin w/egg sandwich (can you tell I don't go there much -lol). Anyway, I would make a trip there and get her a large coffee, and 3 or 4 of those sandwiches because I knew later on after this go round, when we were back on the chemo, she would be loosing weight again. I hated it. I hated what it was doing to her.

I bought her a teddy bear from Vt. Teddy Bear Company when she was depressed, and not bouncing back from the treatments. That was a big hit for her, but no sooner than she got that, her energy level just dropped.

I just kept trying to boost her spirits. I would sent prayer cards, plants, balloons, funny cards, tennis balls, and just tons of pictures. It was the best thing to do to keep her guessing what was coming to her next.

The pain meds only help so much. Cancer sucks. I have lost not only my sister to cancer, but my Godfather. He died from brain cancer. I just cannot even talk about what happened to him. It is too fresh, and too overwhelming to me.

Namaste to all,
Andrew

[Passionaria]

http://www.archive.org/details/TeresaMaijala_AncientMedicneTodayAncientMedicineTo day_FivethingsCancerpatientsneedto

This is a Podcast of a show I did some time ago on Holistic care for Cancer patients, I hope it can be of some help and support to you all. It is with Dr Jeannie Galloway, who is Naturapathic Oncologist here in Austin. She has some important tips to share that may help you or family members who are in the process of dealing with cancer, in any phase. These are the notes from a talk on Five things a Cancer patients should know.

Generally, when a person hears they have cancer they either: relinquish responsibility and let the doctor have control over their life OR get very busy finding out everything they can that might help. I encourage every cancer patient to become involved in their own decision making and to ask questions. Often my work with a patient is to help them figure out what their questions should be.
The treatments for cancer are somewhat limited from a standard medical position. The drugs (especially chemotherapy) are pretty much the same as they have been for many years. New ideas are surfacing, and benefits are found, but we have a long way to go. Chemotherapy, radiation and surgery are designed to kill the cancer, yet in the process healthy tissue is sacrificed along the way. Side effects of standard treatment are typically not the concern of oncologists. There is a huge gap in cancer care when it comes to addressing the concerns of the person undergoing treatment. The oncologist is focused on the cancer, not really on the wholeness of the person getting treatment. Naturopathic doctors with training and experience in complementary and integrative cancer care fill the void with an emphasis on the wellness factor of the whole person. We:
improve nutrient consumption and intake
Treat side effects of cancer treatments
Improve the response of standard treatments
Improve immune function
Improve quality of life
Speed healing processes
Educate patients and their families, and their oncologists on natural medicine's
Reduce recurrence of cancer

What a Naturopathic doctor is NOT; we aren't just "green doctors" who replace a drug with an herb.We aren't interested in just treating symptoms of disease, we do not believe that drugs are always bad or that cancer can be treated without standard medicine. We do believe that there is an ability of the body to heal itself if given the right building blocks and that addressing the underlying cause of a disease is the important thing to do, instead of just treating symptoms. We also believe that all of medicine has an appropriate place...at times drugs and surgery are needed, at times herbs and meditation are needed. There is a whole spectrum of medicine available to the ND.

Five Natural Treatments
1) Blood sugar/Insulin
2) Vit D
3) Green Tea
4) Cortisol
5) Dangerous side effects

First, blood sugar and insulin. If a cancer patient has high blood sugar and high insulin levels in the blood they are much more likely to have a more aggressive form of cancer and to have a high rate of recurrence. I encourage all the people I work with who have a cancer diagnosis to be sure their physician is checking their fasting blood sugar and their insulin levels.

If there are troubles with high blood sugar or insulin there are great ways to impact this; dietary, exercise, supplements such as cinnamon, bitter melon, gymnema have been shown to have effect, and chromium supplementation, too.

Secondly, it is becoming very clear that Vitamin D levels should become part of every person's "annual physical" blood workup. Vitamin D deficiency is being linked to a tremendous amount of disease processes and we are particularly concerned with cancer patients as they have been shown to have lower levels in many cases. If you have cancer, or if you don't and want to prevent it, have your doctor check your Vitamin D status. There are clear guidelines around what these levels should be. Your doctor should know these or s/he can find them out easily.

Thirdly, green tea is part of any natural approach to the cancer fight. Cancer cells turn into tumors by continually dividing even when they should just die. Green tea, among many other important cancer fighting properties, is able to shut down cancer cell division...thus slowing the growth of tumors.

Fourth, stress is a killer. Cortisol levels are associated with increased insulin levels, with decreased melatonin levels (a natural cancer fighter) and with increased inflammation which can drive cancer formation. Treating the adrenal glands, reducing stress, using techniques such as Tai Chi or Qi Gong are great ways to reduce the stress response and see a more positive influence of the body.

Fifth, there are extremely dangerous side effects to chemotherapy. Yet, the use of chemotherapy is highly recommended by Naturopathic Oncologists for many forms of cancer. Sometimes the body needs to have the disease eliminated forceably in order to provide a clear path for healing. The leading side effects that can have long lasting impact are: nerve damage, heart tissue damage and digestive tract symptoms. In each case there are natural treatments that have been shown to reduce the side effects safely. The damage that can be done may be irreparable, and the cancer patient needs to take action to understand the risks and to find a practitioner who can help them avoid side effect damage.

[Andrew, Jr.]

We have done this at one point in our lives. We make due with what we have. For colds, we take our Tylenol, stay in bed, eat chix noodle soup, and suck on cough drops. For some of us, it is a means of survival. Money for medical care and insurance causes alot of us to dely treatment. Cash for services rendered is out of question because it is so high.

I really am not sure of what the answer is. I believe in healthcare for everyone, not just the wealthy. That is why I am all for NIH. It is not a hospital, but a research center. That way all of your medical care is free. It is funded by the drug companies & manufacturers.

I feel that accountability for those sick should be on the minds of those in the medical field. It shouldn't be financial and run as a business for profit. There goes the Hypocratic Oath.

But then again, this is my opinion only.

[Spirit Dancer]

Caregiver Burnout


By Dr. M. Ross Seligson
Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.

It is important for all of us to make the effort to recognize the signs of burnout, In order to do this we must be honest and willing to hear feedback from those around us. This is especially important for those caring for family or friends. Too often Caregivers who are not closely associated with the healthcare profession get overlooked and lost in the commotion of medical emergencies and procedures. Otherwise close friends begin to grow distant, and eventually the Caregiver is alone without a support structure. We must allow those who do care for us, who are interested enough to say something, to tell us about our behavior, a noticed decrease in energy or mood changes.

Burnout isn't like a cold. You don't always notice it when you are in its clutches. Very much like Post Traumatic Stress Syndrome, the symptoms of burnout can begin surfacing months after a traumatic episode. The following are symptoms we might notice in ourselves, or others might say they see in us. Think about what is being said, and consider the possibility of burnout.


•Feelings of depression.

•A sense of ongoing and constant fatigue.

•Decreasing interest in work.

•Decrease in work production.

•Withdrawal from social contacts.

•Increase in use of stimulants and alcohol.

•Increasing fear of death.

•Change in eating patterns.

•Feelings of helplessness.


Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended


•Participate in a support network.

•Consult with professionals to explore burnout issues.

•Attend a support group to receive feedback and coping strategies.

•Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).

•Exercise daily and maintain a healthy diet.

•Establish "quiet time" for meditation.

•Get a weekly massage

•Stay involved in hobbies.

By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. As much as it is said, it can still not be said too often, the best way to be an effective Caregiver is to take care of yourself.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is a great article but I cannot get two hours of downtime let alone a weekly massage,
how do others deal with caregiver burnout? When you alone do the caregiving 24/7
and you cannot afford a private nurse?

[Andrew, Jr.]

Caregivers have a special place in the next life. My hat is off to them. For example hospice workers. They are definitely angels. :rrose:

[Passionaria]

Benefits of Acupuncture in Cancer Care

http://ih.constantcontact.com/fs018/1101522979196/img/37.jpg

Here are some ways that acupuncture can help while being treated for and recovering from cancer.Cancer treatments are aggressive and cause numerous unwanted side effects as well as a lowered immune system. Acupuncture is an excellent adjunctive therapy in cancer treatments because of its ability to relieve pain, reduce side effects, accelerate recovery and improve quality of life.

What Acupuncture is used for during Cancer Treatment

Acupuncture provides a total approach to health care for people with cancer. It can be used to address many of the concerns that come up during and after chemotherapy, radiation, biological therapy and surgery.

According to the National Cancer Institute, acupuncture may cause physical responses in nerve cells, the pituitary gland, and parts of the brain. These responses can cause the body to release proteins, hormones, and brain chemicals that control a number of body functions. It is proposed that, by these actions, acupuncture affects blood pressure and body temperature, boosts immune system activity, and causes the body's natural painkillers, such as endorphins, to be released.

Areas that acupuncture has shown the most promise include:
Nausea and Vomiting
Dry Mouth, Night Sweats and Hot Flashes
Stress, Anxiety and Fatigue
Pain Management
Increasing White Blood Cell Count



Source: National Cancer Institute. www.cancer.org

[AtLast]

[QUOTE=Spirit Dancer;130150]Caregiver Burnout


By Dr. M. Ross Seligson
Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.



It is important for all of us to make the effort to recognize the signs of burnout, In order to do this we must be honest and willing to hear feedback from those around us. This is especially important for those caring for family or friends. Too often Caregivers who are not closely associated with the healthcare profession get overlooked and lost in the commotion of medical emergencies and procedures. Otherwise close friends begin to grow distant, and eventually the Caregiver is alone without a support structure. We must allow those who do care for us, who are interested enough to say something, to tell us about our behavior, a noticed decrease in energy or mood changes.

Burnout isn't like a cold. You don't always notice it when you are in its clutches. Very much like Post Traumatic Stress Syndrome, the symptoms of burnout can begin surfacing months after a traumatic episode. The following are symptoms we might notice in ourselves, or others might say they see in us. Think about what is being said, and consider the possibility of burnout.


•Feelings of depression.

•A sense of ongoing and constant fatigue.

•Decreasing interest in work.

•Decrease in work production.

•Withdrawal from social contacts.

•Increase in use of stimulants and alcohol.

•Increasing fear of death.

•Change in eating patterns.

•Feelings of helplessness.


Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended


•Participate in a support network.

•Consult with professionals to explore burnout issues.

•Attend a support group to receive feedback and coping strategies.

•Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).

•Exercise daily and maintain a healthy diet.

•Establish "quiet time" for meditation.

•Get a weekly massage

•Stay involved in hobbies.

By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. As much as it is said, it can still not be said too often, the best way to be an effective Caregiver is to take care of yourself.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~[I]
This is a great article but I cannot get two hours of downtime let alone a weekly massage,
how do others deal with caregiver burnout? When you alone do the caregiving 24/7
and you cannot afford a private nurse?


[B][COLOR="Black"]
A very important post! I have been a cancer care-giver for 4 people in my life that I cherished and did lose. It was the hardest thing I have yet to do in my life and I did burn-out. In fact, I believe that some of my impatience with people now has to do with this. I see so much BS being attended to when people are dealing with this damn disease and other dibilitating health issues! My entire perspective on what really matters in this life has changed.

Changed my life, forever. A special hug and much gratitude for those of you that have been, or in this position. Always take time for yourself even if it is something very simple. So many now are having to do this due to not having resources.

[fiercegrrl]

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

[Spirit Dancer]

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

FG
Going into hospice isn't giving up, it's another tool in your fight against this Cancer, a tool to help you remain strong and try to be free of pain. Let your family know you're not giving up that you are simply adding to your exsisting support system. Panic is a coping mechanism we use when we fear losing our control, it is okay to feel. Know if you need more support there are many online support groups as well there are many in the DC area, if you should neeed anything PM and i'll link you site.
Hope, Faith and healing light to you.

[SuperFemme]

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

i understand what you mean about hospice care and your family feeling you're giving up. you do what is best for you, and it sounds like hospice isn't a bad idea.

want to know something fabulous? if you DO get hospice care it doesn't mean you HAVE to die within a certain time frame.

get your doc to write you a scrip for zofran injections...it's the only thing that really works on the nausea. take your pain meds. start hospice...goddess knows we are all pulling for you and worried about the fact that your mom likes to steal your medicines. you need support and a team. hospice can give you that. ((((hugs))))

[Andrew, Jr.]

Fiercegrrl,

Zofran is wonderful! Use it to your advantage. I took it when I had my surgeries. It did wonders for nausea. Plus if you have hospice workers there with you, your mother cannot take your medicines. They will take that over first thing.

Remember that hospice is a service. It is not giving up, honey. No No No. I will tell you what I told my sister when this service was offered to us. I said yes and she looked at me with huge brown eyes. I could tell what she was thinking - I was a nut in writing her off. That was the last thing on my mind. It meant that we would have backup giving us more time together. We would not have to worry about the little things in life that take our time up. Let them worry with that. If we wanted to sit outside on her shaded deck and enjoy the garden, and lawn, then we had the time to do so.

Nobody knows the end. Nobody can tell you that. No doctor, no nurse. Get that thinking out of your head.

You are on my mind, and in my prayers. Know that I love you dearly.

Love and Peace,
Drew

[Andrew, Jr.]

There is a free magazine to anyone and everyone who wants it. It is called "Cure-Cancer Updates, Research, & Education". I was told about this by my late sister's oncologist. In fact, she told all of her patients & families, relatives, & friends to get it.

This is everything you need:

1. www.curetoday.com
2. call 1-800-210-cure (2873)
3. fax 214-367-3306

In the upcoming issues of Cure:

-The latest advances in treating breast cancer

-Health Care Reform

-Energy Balance

-Survivor Guilt

-Finding a Professional Caregiver

-Managing Depression

Namaste,
Drew

[Andrew, Jr.]

Rosie came across this, and actually told me to post this article. It was in The Baltimore Sun's Parade Magazine July 4, 2010 issue.

It basic states that leftover medicines safely is not about flushing them down the toilet or throwing them away in the trash. The National Community of Pharmacists Assoc. has launced a "Dispose My Meds" campaign. More than 800 communiity pharmicies in 40 states have signed on. It's easy to do. Find a partcipapating pharmacy and it will send them to a medical waste facility. Or you will get a postage paid envelope to use to mail everything direcly from your home. Some of the medicine and other medical supplies are also recycled for those who are in need.

Go to DisposeMyMeds.org for details and to find a pharmacy near you.

Namaste,
Drew

[suebee]

Two years ago yesterday, and I forgot all about it until I saw this thread. I guess that's a good sign, huh?

Prayers and hugs to everyone. :praying:

Sue :floatbee:

[Andrew, Jr.]

Cancer never ends. It takes so many loved ones. I am just so unprepared for what it has taught me. It takes my very breath away each and every time.

[Spirit Dancer]

Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.

[Tommi]

Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.
((((((((fiercegrrl)))))) and (((((((((all those that come here to post and read)))))))).
Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes.
My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week.

I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that"

Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me..

" There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news.

Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out.
So, I just needed to vent..

Keep a journal for those that can't. I wish I had thought of that for Milana.

[Spirit Dancer]

((((((((fiercegrrl)))))) and (((((((((all those that come here to post and read)))))))).
Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes.
My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week.

I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that"

Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me..

" There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news.

Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out.
So, I just needed to vent..

Keep a journal for those that can't. I wish I had thought of that for Milana.

((((((((((Tommi)))))))))) and ((((((((MB))))))))))
I so very sorry to read this, it is very unfortunate when we are not next of kin or have that wonderful advance directive or POA we are shut out. Clearly even in 2010 there needs to be more in place for those of us who are deemed "just a friend." Today I light candles for you all and send light your way. :vigil::praying:

[Tommi]

Two years ago yesterday, and I forgot all about it until I saw this thread. I guess that's a good sign, huh?

Prayers and hugs to everyone. :praying:

Sue :floatbee:

Yes..That is agood sign suebee..

:rubberducky:

[Spirit Dancer]

MRSA and Cancer do not mix; the symptoms of MRSA will mimmick those that you commonly go through with Cancer tx. If you're ever in doubt and they've not run tests for infection ask, it can save your life or your loved ones life.
It's funny the body doesn't like foriegn objects such as picc lines and ports a wonderful place for MRSA to lay in wait and take over and can cause serious issues even death.:
Defined by the Mayo Clinic
Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.

Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

MRSA Death Numbers
The vast majority (85%) of those with MRSA infections who had visited a hospital caught the infection or had it when they were not even hospitalized. It's estimated that in America, more people die of MRSa than die from AIDS. The Centers for Disease control came out with the report in 2007, stating that in 2005, 18,650 people died and 94,000 people caught the infection. In the same year, only 16,000 people had fallen victim and died from AIDS.

Most cases of MRSA infection are considered harmless. The problem is when an open wound or weak immune systems is present, that the infection gains a fatal foothold. The other problem is that MRSA has continued to gain strength and mutate, so that when a person does catch it, it has become potent. In the mid-1970s, MRSA was only 2% of all staph infections recorded. Two decades, later the percentage climbed to 22% and another decadeafter that, the number was up to a staggering 63%.
being proactive, when in doubt ask for blood cutures.

[BestButchBoy]

Each time you send a cake, Electrolux will donate $1 to the Ovarian Cancer Research Fund.

http://www.kelly-confidential.com/index.html

It will cost you only a minute or two of your time.

Cheers for Queers!

[fiercegrrl]

tonight i can't figure out why i should go tomorrow and get an infusion of a drug that will add some extra time to my life. i don't really have any reason to get up any more. my friends have mostly all run away. i have no job. i can't find the energy to do the things i like to do. things that would help bring in some money. driving my truck is now painful sinc ei have a manual and my joints all hurt. i just don't see why i should prolong this. kind of a sucky place to be in.

[Corkey]

tonight i can't figure out why i should go tomorrow and get an infusion of a drug that will add some extra time to my life. i don't really have any reason to get up any more. my friends have mostly all run away. i have no job. i can't find the energy to do the things i like to do. things that would help bring in some money. driving my truck is now painful sinc ei have a manual and my joints all hurt. i just don't see why i should prolong this. kind of a sucky place to be in.


Because you are alive, and it is in living that hope can be found.

[SuperFemme]

tonight i can't figure out why i should go tomorrow and get an infusion of a drug that will add some extra time to my life. i don't really have any reason to get up any more. my friends have mostly all run away. i have no job. i can't find the energy to do the things i like to do. things that would help bring in some money. driving my truck is now painful sinc ei have a manual and my joints all hurt. i just don't see why i should prolong this. kind of a sucky place to be in.

i spent the better part of last week getting 6 bags of blood, four bags of cold plasma transufions and god knows what else to keep me on this planet.

i have to tell you that i am one of your biggest fans, and quietly cheer you on especially when I am in my worst of ways.

the universe will take care of you if you take care of you. i know this for sure.

please don't give up or in. your star shines bright and i need it here with me.

xoxo
cancergirl

[Spirit Dancer]

There comes a time when we don't fully comprehend
what our loved ones are feeling or thinking at certain times.
As of late it feels like a twilight zone movie and no matter what
I say it is the wrong words at not a good time.

Being the Partner/ Caregiver/Advocate can really
be a demanding roll especially when your partner
feels you're siding with the doctors over them. It's a fine line we walk in
assisting with decisions and being supportive as well.

Now I find that keeping a separate journal with issues for the doctor
to review and then the issues my partner has with the doctor,
has helped me to better improve communications with both.

Most important role for me is Hys partner and protector, the guard
of the gate that will allow no harm, and if there is an issue the doctors answer to me. :fastdraq:

[Tommi]

Spirit Dancer,
My heart goes out to you and yours. You must be in that proverbial rock and hard place.

Keeping the separate lists sounds like a great idea. I found myself going around to the nurses station before I go see my friend Milana, and reviewing what has and has not happened. She put me down as #2 on her Advanced Directive, and # 1 to get and give info to the Doc's. I have been calling when not there, as my visits and or not visiting cause her to get into such a rage it became unhealthy for her for me to be there all the time. She is agitated all the time now, no matter which anti-anxiety meds they give her, and is lashing out to hit at the nurses, and at her sister and I.

Found out last week Milana's path report in June was Stage 4 Lung Cancer, and we were told it was espophageal CA. She Still has not had chemo, or radiation treatments since the accidental trach event in July. She went from Acute Care hosp and is now in a nursing home. Next week she goes to UCI to have the PET Scan repeated, since they don't want to start radiation based on the scans done in May. Hopefully they will start treatment soon, as her.

Wish we could find the magic elixir to wipe out this fucking disease. :moonstars:.
Love to you all,
Tommi

[Spirit Dancer]

Spirit Dancer,
My heart goes out to you and yours. You must be in that proverbial rock and hard place.

Keeping the separate lists sounds like a great idea. I found myself going around to the nurses station before I go see my friend Milana, and reviewing what has and has not happened. She put me down as #2 on her Advanced Directive, and # 1 to get and give info to the Doc's. I have been calling when not there, as my visits and or not visiting cause her to get into such a rage it became unhealthy for her for me to be there all the time. She is agitated all the time now, no matter which anti-anxiety meds they give her, and is lashing out to hit at the nurses, and at her sister and I.

Found out last week Milana's path report in June was Stage 4 Lung Cancer, and we were told it was espophageal CA. She Still has not had chemo, or radiation treatments since the accidental trach event in July. She went from Acute Care hosp and is now in a nursing home. Next week she goes to UCI to have the PET Scan repeated, since they don't want to start radiation based on the scans done in May. Hopefully they will start treatment soon, as her.

Wish we could find the magic elixir to wipe out this fucking disease. :moonstars:.
Love to you all,
Tommi

Sending much light to you my friend and healing energy to Milana;
we do what we do; because it's in us. We take care of others
and often we forget to breathe ourselves. Take time to smell the:rrose::praying:

[Tommi]

Sending much light to you my friend and healing energy to Milana;
we do what we do; because it's in us. We take care of others
and often we forget to breathe ourselves. Take time to smell the:rrose::praying:
http://puntabulous.com/wp-content/StopSmell.JPG
Thanks, and backattcha ya know* Just sayin.
http://www.davita.com/UploadedImages/CaregiverStress-th.jpg

[Spirit Dancer]

http://i177.photobucket.com/albums/w238/r741209/HOPE.jpg
http://i332.photobucket.com/albums/m332/alsiskabob/Faith.jpg

My Faith is larger than the Hills -- by Emily Dickinson
My Faith is larger than the Hills --
So when the Hills decay --
My Faith must take the Purple Wheel
To show the Sun the way --

'Tis first He steps upon the Vane --
And then -- upon the Hill --
And then abroad the World He go
To do His Golden Will --

And if His Yellow feet should miss --
The Bird would not arise --
The Flowers would slumber on their Stems --
No Bells have Paradise --

How dare I, therefore, stint a faith
On which so vast depends --
Lest Firmament should fail for me --
The Rivet in the Bands

[Domestic Diva]

this will be the first time I have spoken of this online, hell I don't talk about it much in person. I have stage 3a breat cancer. I have been batteling cancer of one type of another for a few years, first just benign tumors, then uterin cancer, after a hystorectomy I was good for a few years then one day there they where...3 lumps in my left breast.went it for a checkup, then the biopsys...then the 5 days wait...wich I think was the hardest part...then the news that changed everything. they wanna take my boobs, and I know that choosing between cancer and my clevage is a no brainer Im a girlfriend and a mother, but I love my clevage....I finally found a doc that will use my body fat for reconstruction...yayy! tummy tuck and new clevage! went in for per op stuff and my white blood cell count is in the 100,000, for those that don't know thats WAY more then it should be. So now I take pills and wait some more....
I, at first, felt like this was punishment for some awful thing I had done and then I thought about my life and I could't come up with one thing I had done that was that bad, I mean I know I am not perfect but jesus...I'm not that bad either. I made a bucket list...Everyone thoought that was funny, but what if they can't fix it, what if I die?
I dont wanna go out feeling like I haven't done anything I wanted to...ya know...now I live in a new place, and I don't have a lot of adult friends...that sucks more cause I feel the depression...So I am seeking new peoples to relate with, people inside and outside my community to laugh with and talk about stuff other then cancer, but I guess I have to talk about this stuff too:hangloose:

[Spirit Dancer]

this will be the first time I have spoken of this online, hell I don't talk about it much in person. I have stage 3a breat cancer. I have been batteling cancer of one type of another for a few years, first just benign tumors, then uterin cancer, after a hystorectomy I was good for a few years then one day there they where...3 lumps in my left breast.went it for a checkup, then the biopsys...then the 5 days wait...wich I think was the hardest part...then the news that changed everything. they wanna take my boobs, and I know that choosing between cancer and my clevage is a no brainer Im a girlfriend and a mother, but I love my clevage....I finally found a doc that will use my body fat for reconstruction...yayy! tummy tuck and new clevage! went in for per op stuff and my white blood cell count is in the 100,000, for those that don't know thats WAY more then it should be. So now I take pills and wait some more....
I, at first, felt like this was punishment for some awful thing I had done and then I thought about my life and I could't come up with one thing I had done that was that bad, I mean I know I am not perfect but jesus...I'm not that bad either. I made a bucket list...Everyone thoought that was funny, but what if they can't fix it, what if I die?
I dont wanna go out feeling like I haven't done anything I wanted to...ya know...now I live in a new place, and I don't have a lot of adult friends...that sucks more cause I feel the depression...So I am seeking new peoples to relate with, people inside and outside my community to laugh with and talk about stuff other then cancer, but I guess I have to talk about this stuff too:hangloose:

Domestic Diva
We are here for you(f)

Don't Quit

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit --
Rest if you must, but don't quit.

ife is strange with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow --
You may succeed with another blow.

ften the goal is nearer than
It seems to a fair and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late when night came down,
How close he was to the golden crown.

uccess is failure turned inside out --
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit, --
It's when things seem worst that you mustn't quit.

-- Author Unknown --

[Tommi]

this will be the first time I have spoken of this online, hell I don't talk about it much in person. I have stage 3a breat cancer. I have been battling cancer of one type of another for a few years, first just benign tumors, then uterine cancer, after a hysterectomy I was good for a few years then one day there they where...3 lumps in my left breast.went it for a checkup, then the biopsys...then the 5 days wait...which I think was the hardest part...then the news that changed everything. they wanna take my boobs, and I know that choosing between cancer and my clevage is a no brainer. Im a girlfriend and a mother, but I love my cleavage....I finally found a doc that will use my body fat for reconstruction...yayy! tummy tuck and new clevage! went in for pre op stuff and my white blood cell count is in the 100,000, for those that don't know thats WAY more then it should be. So now I take pills and wait some more....
I, at first, felt like this was punishment for some awful thing I had done and then I thought about my life and I could't come up with one thing I had done that was that bad, I mean I know I am not perfect but jesus...I'm not that bad either. I made a bucket list...Everyone thought that was funny, but what if they can't fix it, what if I die?
I dont wanna go out feeling like I haven't done anything I wanted to...ya know...now I live in a new place, and I don't have a lot of adult friends...that sucks more cause I feel the depression...So I am seeking new peoples to relate with, people inside and outside my community to laugh with and talk about stuff other then cancer, but I guess I have to talk about this stuff too:hangloose:

Hi there.. Well, if you were close by, we could chat about that Club we became members of without even asking. That one that makes you realize your mortality, and that makes every day matter. And it's scary.

Have you researched ALL your options? Looked for Clinical Studies in your neighborhood. I signed up for one after being diagnosed with Uterine cancer almost 7 years ago.

If there is anythiong I can do, holler, write, scream, send smoke signals, or PM me. My email addy is in my profile.

This is from NIH.gov website.

Stage IIIA (operable)

Modified radical mastectomy or radical mastectomy with either radiation or chemotherapy. Radiation could be preoperative external beam radiation or postoperative external beam radiation with a booster dose to primary site. Chemotherapy could be CMF, CA, CAF, CMFP, CMFVP, L-PAM and 5-FU with or without tamoxifen.

Here is a link to look at what's new and what's going on in the research and clinical trials. http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=8960422

So, stay in touch. and PS: I'm glad you are going through with the mastectomy, with or without the reconstruction, the cancer needs to go. Bang Bang:fastdraq:

[DapperButch]

this will be the first time I have spoken of this online, hell I don't talk about it much in person. I have stage 3a breat cancer. I have been batteling cancer of one type of another for a few years, first just benign tumors, then uterin cancer, after a hystorectomy I was good for a few years then one day there they where...3 lumps in my left breast.went it for a checkup, then the biopsys...then the 5 days wait...wich I think was the hardest part...then the news that changed everything. they wanna take my boobs, and I know that choosing between cancer and my clevage is a no brainer Im a girlfriend and a mother, but I love my clevage....I finally found a doc that will use my body fat for reconstruction...yayy! tummy tuck and new clevage! went in for per op stuff and my white blood cell count is in the 100,000, for those that don't know thats WAY more then it should be. So now I take pills and wait some more....
I, at first, felt like this was punishment for some awful thing I had done and then I thought about my life and I could't come up with one thing I had done that was that bad, I mean I know I am not perfect but jesus...I'm not that bad either. I made a bucket list...Everyone thoought that was funny, but what if they can't fix it, what if I die?
I dont wanna go out feeling like I haven't done anything I wanted to...ya know...now I live in a new place, and I don't have a lot of adult friends...that sucks more cause I feel the depression...So I am seeking new peoples to relate with, people inside and outside my community to laugh with and talk about stuff other then cancer, but I guess I have to talk about this stuff too:hangloose:

Hi, Domestic Diva.

Last week I had my last chemo treatment for Stage 3a colon cancer.

I had surgery in early August and then had chemo starting a month later every other week (along with a chemo pump for 48 hours after each infusion).

I tend to be a person who researches the heck out of the smallest of things when making a decision (for example, when buying a new camera), but this was the one time I chose not to. I was concerned that I would become overwhelmed with the information I found and I was worried that I would get the wrong information. You have been down this road before, so you probably know a lot already and know what you want to know and don't want to know, so that is a good thing. I found that I wanted to know little about the surgery, but a lot about the chemo treatments. Fortunately, I chose a surgeon who didn't talk, but found a chatty oncologist. Let your doctors know what you need and the pace you want to receive information.

I live in an area that has one of the highest cancer rates in the nation. I am considering moving even though I have lived here my whole life. Although I believe that nutrition, exercise, and in some cases heredity, impacts one's chances of getting cancer, I believe the environment does, as well.

Hopefully, someone who has had breast cancer will come in here or PM you.

However, if you want some additional support from someone else who has had to deal with cancer (although not the same type), please don't hesitate to PM me.

Seriously. Anytime.

Take care of yourself.

[Delish]

So I have been away from the site for a few months now. My ex was dx with this in Sept. 1 week later was starting chemo and the 1st day of chemo she found out it had already spread...3 spots in her L5 1 in her hip and 1 in her femur. She in the beginning pushed me away then she wanted me there to take care of her and our house and animals we have together. I am the 1 she screams at...fusses with etc. I feel like I am CONSTANTLY on an emotional rollercoaster to the point of starting therapy next week :(





Inflamatory Breast Cancer or IBC is horrid.

I feel for the woman as there are certain factions of my family that gush and coo over me when I am sick. I somehow end up feeling responsible for their emotional turmoil.

My inner circle is very stern with me, and treats me as if I was healthy as much as they can. Thank god.

[Tommi]

Cancer doesn't call to see if your busy and have anything planned

Cancer doesn't care that you have other plans.

Cancer doesn't knock, it just comes crashing through the walls of your sanity.

and then...it disappears. Or does it.

Morbid thoughts before a pre-op at 3:30. Raw feelings..me with feelings, wanting to see the sunrise, and hold my tigger while she purrs, and rub Peaches boy till he goes to sleep, and smell the roses. To hear the voices of loved ones near and far that I have failed to call and touch base with.

Wanting to plant that 7th rose bush on May 15th. Wanting quiet in my mind.
Wanting everyone to be okay. Just for today. I'll deal with tomorrow when it gets here. .:bunchflowers:

[Spirit Dancer]

http://i201.photobucket.com/albums/aa151/Jefffixit/DSC02256.jpg
A Time To Believe

To believe is to know that every
day is a new beginning.
It is to trust that miracles happen,
and dreams really do come true.

To believe is to see angels
dancing among the clouds
To know the wonder of a stardust
sky and the wisdom of the
man in the moon.

To believe is to know the value
of a nurturing heart,
The innocence of a child's eyes and
the beauty of an aging hand, for it
is through their teachings
we learn to love.



To believe is to find the strength
and courage that lies within us.
When it is time to pick up
the pieces and begin again.

To believe is to know we are not alone,
That life is a gift and this is our
time to cherish it.



To believe is to know that wonderful
surprises are just waiting to happen,
And all our hopes and dreams
are within reach.
"If only we believe"

Author Unknown

[DapperButch]

So I have been away from the site for a few months now. My ex was dx with this in Sept. 1 week later was starting chemo and the 1st day of chemo she found out it had already spread...3 spots in her L5 1 in her hip and 1 in her femur. She in the beginning pushed me away then she wanted me there to take care of her and our house and animals we have together. I am the 1 she screams at...fusses with etc. I feel like I am CONSTANTLY on an emotional rollercoaster to the point of starting therapy next week :(

Make sure you take care of yourself. Just because she has cancer does not mean that she can take out her frustrations on you. She is still responsible for how she is with others.

Yes, it is understandable that her fear and anxiety may result in irritability, but that doesn't mean that she shouldn't acknowledge it or keep it in check.

As a side note, I know that the steroids in my chemo treatment (5FU) causes some BIG TIME irritability in me. My point is, her irritability is not just about having a serious illness, it is also chemically induced. I worked almost full time (72 hours every two weeks). I had been only taking a half day on chemo infusion days, but after noting I was irritable with coworkers, I decided I needed to take the whole day off.

In general, I was kind of whacky. In fact, I screwed up and wrote something in a work email that I shouldn't have during that time (and never would have if I was in my "right mind"). There were some repercussions due to it.

My point is, understand her emotional state, but don't excuse her behavior. Therapy may be helpful to her. Some cancer centers have therapists trained in working with people who have cancer. Also, there may be some free support group there, as well. At minimum, it may help her to get on some support groups/forums online to talk with others who have the same illness.

I know that you and my partner have been PMming, but if you want to talk to someone who went through cancer treatment, please don't hesitate to PM me, as well. I would also be happy talk with your ex via email if she is not on this site. It is a very tough road to travel. For both of you.

Take care of yourself.

[Andrew, Jr.]

Rosie and I are asking for prayers for her one and only sister. She has Barrett's Disease. In fact, she has had this for a number of years, and it has just gotten worse over time. Medicine no longer works, and surgery is a 50/50%. However, she is highly allergic to most anethiesthics (sp?), which decreases her survival rate. We are hoping for surgery in August, but that too is up in the air. She has a tumor growing around her voice box and vocal cords. It is a bad situation no matter how you look at it.

Thanks.

[Tommi]

~ If only we believe~ Cherishing today. Thanks SD..

http://i201.photobucket.com/albums/aa151/Jefffixit/DSC02256.jpg
A Time To Believe

To believe is to know that every
day is a new beginning.
It is to trust that miracles happen,
and dreams really do come true.

To believe is to see angels
dancing among the clouds
To know the wonder of a stardust
sky and the wisdom of the
man in the moon.

To believe is to know the value
of a nurturing heart,
The innocence of a child's eyes and
the beauty of an aging hand, for it
is through their teachings
we learn to love.


To believe is to find the strength
and courage that lies within us.
When it is time to pick up
the pieces and begin again.

To believe is to know we are not alone,
That life is a gift and this is our
time to cherish it.


To believe is to know that wonderful
surprises are just waiting to happen,
And all our hopes and dreams
are within reach.
"If only we believe"

Author Unknown

Just thought I would read, and resend strength and courage from my heart to yours. Hope today is full of sunshine for those in the dark, and warmth for those that are indoors,

If only we belive

[DapperButch]

Finally got my chemo port out yesterday! Nice to have that reminder, gone!

Soon I will have another colonoscopy and then I will feel completely in the clear!

:thumbsup:

[JakeTulane]

Congratulations Dap. Having lost My Dad to cancer.. and watched My Mom fight and beat breast cancer.. I know this must be a huge relief.. and victory for you. I hope you continue to regain your health.. and remain cancer free. smiles.



Finally got my chemo port out yesterday! Nice to have that reminder, gone!

Soon I will have another colonoscopy and then I will feel completely in the clear!

:thumbsup:

[DapperButch]

Congratulations Dap. Having lost My Dad to cancer.. and watched My Mom fight and beat breast cancer.. I know this must be a huge relief.. and victory for you. I hope you continue to regain your health.. and remain cancer free. smiles.

Thanks, Jake! I appreciate it...very much!

[Tommi]

Finally got my chemo port out yesterday! Nice to have that reminder, gone!

Soon I will have another colonoscopy and then I will feel completely in the clear!

:thumbsup:

In 11 days see my Oncologist for my annual check-up..May 15, will be the 7 year follow-up to Endometrial Cancer.

Hey DapperButch, Having that chemo port out must be a reason to Celebrate...:wine: My friend Milana heads to surgery for her second one in on Monday. Infection at 1st port site, and she has only 3 more sessions.

Every day is such an adventure, and your upcoming colonoscopy is one of the favorite things you can do, and I KNOW YOU WILL BE THRILLED WHEN IT IS OVER.. :vigil:

Had mine several weeks ago, and got the best report. Doc said "Your colon is boring. See you in 5 years."

So, keeping my fingers crossed that all the tests, MRI, US, lab work over the last month match the negative colonoscopy results.

[Novelafemme]

DapperButch, a question about your chemo port...did you ever consider leaving it in or was it a no brainer for you as far as having it removed? My thinking is that it's yet another surgery. :(

[DapperButch]

DapperButch, a question about your chemo port...did you ever consider leaving it in or was it a no brainer for you as far as having it removed? My thinking is that it's yet another surgery. :(

I don't think you can leave them in, can you?

It was a really simple surgery. They don't put you under like they do when getting it inserted. My doc just gave me a local, cut me about 1.5 inches, and then popped it out. Easy peasy. I asked to look at it b/c I was curious. It just looked like a large tadpole!

And there really isn't much pain afterwards, either. I had some serious pain for a few days when they put it in b/c they have to push and pull on the muscle, but no pain really after it came out. I don't think I even took a Tylenol.

ETA: It is funny that someone posted on this thread today. I have my colonoscopy tomorrow...so I going through the "prep" right now. sucks ass. no pun intended.

[Novelafemme]

I don't think you can leave them in, can you?

It was a really simple surgery. They don't put you under like they do when getting it inserted. My doc just gave me a local, cut me about 1.5 inches, and then popped it out. Easy peasy. I asked to look at it b/c I was curious. It just looked like a large tadpole!

And there really isn't much pain afterwards, either. I had some serious pain for a few days when they put it in b/c they have to push and pull on the muscle, but no pain really after it came out. I don't think I even took a Tylenol.

ETA: It is funny that someone posted on this thread today. I have my colonoscopy tomorrow...so I going through the "prep" right now. sucks ass. no pun intended.

I was told you could leave them in...but SO good to know it is a far less invasive procedure having it removed! PHEW!!

Positive thoughts for tomorrow's "butt T.V." Oh, how I loathe bowl prepping! :goodluck:

[DapperButch]

I was told you could leave them in...but SO good to know it is a far less invasive procedure having it removed! PHEW!!

Positive thoughts for tomorrow's "butt T.V." Oh, how I loathe bowl prepping! :goodluck:

Thanks for the positive thoughts! It should be fine. :-)

If you have any more questions/need support, feel free to PM me!

[Tommi]

I don't think you can leave them in, can you?

It was a really simple surgery. They don't put you under like they do when getting it inserted. My doc just gave me a local, cut me about 1.5 inches, and then popped it out. Easy peasy. I asked to look at it b/c I was curious. It just looked like a large tadpole!

And there really isn't much pain afterwards, either. I had some serious pain for a few days when they put it in b/c they have to push and pull on the muscle, but no pain really after it came out. I don't think I even took a Tylenol.

ETA: It is funny that someone posted on this thread today. I have my colonoscopy tomorrow...so I going through the "prep" right now. sucks ass. no pun intended.


Milana, my Buddy had her port in for 10 mos. It got infected last month, had it removed, and she now has a pic line, .have to wait 45 days for infection to clear before doing another port.

:goodluck: Colonoscopy* :goodluck:

*My Doc said "All done. Your colon was boring. See you in 5 years.

Went through that last month. OMGAwd. Prior night->62 OZ of water with bottle of Miramax--fllowed by 32 Oz of water with bottle Miramax in AM before exam. :|:byebye:

On Weds. I see my Gyne/Oncologist for the 7 year Endometrial CA follow-up

[DapperButch]

Milana, my Buddy had her port in for 10 mos. It got infected last month, had it removed, and she now has a pic line, .have to wait 45 days for infection to clear before doing another port.

:goodluck: Colonoscopy* :goodluck:

*My Doc said "All done. Your colon was boring. See you in 5 years.

Went through that last month. OMGAwd. Prior night->62 OZ of water with bottle of Miramax--fllowed by 32 Oz of water with bottle Miramax in AM before exam. :|:byebye:

On Weds. I see my Gyne/Oncologist for the 7 year Endometrial CA follow-up

Yeppers...the bathroom would be my friend at this moment. Same routine you describe except magnesium citrate in the morning. Some nasty tasting stuff, as I recall.

Thanks for the good luck. Hopefully, my GI doc will say the same thing!

[Novelafemme]

Yeppers...the bathroom would be my friend at this moment. Same routine you describe except magnesium citrate in the morning. Some nasty tasting stuff, as I recall.

Thanks for the good luck. Hopefully, my GI doc will say the same thing!

OH DEAR...even reading the words mag citrate makes me feel queasy. I think I lost a good 6lbs with the bowel prep alone!!!

Thinking of you on Wednesday, Tommi!!!!!

[Spirit Dancer]

I was told you could leave them in...but SO good to know it is a far less invasive procedure having it removed! PHEW!!

Positive thoughts for tomorrow's "butt T.V." Oh, how I loathe bowl prepping! :goodluck:

I don't think you can leave them in, can you?

It was a really simple surgery. They don't put you under like they do when getting it inserted. My doc just gave me a local, cut me about 1.5 inches, and then popped it out. Easy peasy. I asked to look at it b/c I was curious. It just looked like a large tadpole!

And there really isn't much pain afterwards, either. I had some serious pain for a few days when they put it in b/c they have to push and pull on the muscle, but no pain really after it came out. I don't think I even took a Tylenol.

ETA: It is funny that someone posted on this thread today. I have my colonoscopy tomorrow...so I going through the "prep" right now. sucks ass. no pun intended.

Hi sending positive energy to you both, if you have a PICC line it can stay is for a short time, a power port can remain two years and longer as long as it is accessed and flushed every four weeks, and it stay clear of any infections. Power ports are ideally the best for long term chemotherapy IMO they have far less risk of infection. Leaving a :vigil: for those who are fighting and those who are caring for them.

[DapperButch]

I'm in the clear! :thumbsup::happyjump:

[Tommi]

I'm in the clear! :thumbsup::happyjump:

Glad to her the good news.


:pile: :byebye:

[The_Lady_Snow]

I'm in the clear! :thumbsup::happyjump:


Congrats!!!!!:hamactor:

That's great news!!

[DapperButch]

Glad to her the good news.


:pile: :byebye:

Congrats!!!!!:hamactor:

That's great news!!

Thanks, Tommi and Lady Snow. I appreciate it.

I wasn't aware how much I was holding my breath until it was over!

[The_Lady_Snow]

Yay you should celebrate BIG!

[Tommi]

Thanks, Tommi and Lady Snow. I appreciate it.

I wasn't aware how much I was holding my breath until it was over!

I get it.

7AM tomorrow, 7 year checkup.. So tonite NetFlix & popcorn.

[DapperButch]

I get it.

7AM tomorrow, 7 year checkup.. So tonite NetFlix & popcorn.

Good Luck, Tommi. positive thoughts coming your way! :hangloose:

[Novelafemme]

I get it.

7AM tomorrow, 7 year checkup.. So tonite NetFlix & popcorn.

Good luck, Tommi!!!

YAY, DAPPER!!!!!!

[deb_U_taunt]

I have been diagnosed with invasive ductual carcinoma (right breast), stage 2B, grade 3, triple negative.
I have my second of eight chemo treatments tomorrow. Today, lots of hair in my brush. My partner and I both have joined support groups and hoping to continue to be healthy enough to attend.
I am having a hard time moving today. Not in pain or anything, just a sad day. I am crying easy.
My partner is scared of me and started sleeping in the other room. He thinks he might accidently roll over on me at night. My first treatment, he left to put new front tires on my car while I was dozing. Typically guy to the core. Can't fix it and is fixing what he can. :)

[Novelafemme]

I have been diagnosed with invasive ductual carcinoma (right breast), stage 2B, grade 3, triple negative.
I have my second of eight chemo treatments tomorrow. Today, lots of hair in my brush. My partner and I both have joined support groups and hoping to continue to be healthy enough to attend.
I am having a hard time moving today. Not in pain or anything, just a sad day. I am crying easy.
My partner is scared of me and started sleeping in the other room. He thinks he might accidently roll over on me at night. My first treatment, he left to put new front tires on my car while I was dozing. Typically guy to the core. Can't fix it and is fixing what he can. :)

{{{{{Debby}}}}} you are not alone, dear one. one thing i can say from experience is that it's ok to just plop into a pile of mush after chemo. cry, sleep, snuggle...whatever your body intrinsically tells you it needs - listen and give. and don't forget to put a hand on your heart and tell yourself how much you love YOU. this is your one beautiful life and there are times you/we have to fight like hell for it!! :bunchflowers:

[deb_U_taunt]

{{{{{Debby}}}}} you are not alone, dear one. one thing i can say from experience is that it's ok to just plop into a pile of mush after chemo. cry, sleep, snuggle...whatever your body intrinsically tells you it needs - listen and give. and don't forget to put a hand on your heart and tell yourself how much you love YOU. this is your one beautiful life and there are times you/we have to fight like hell for it!! :bunchflowers:

Thank you Novelafemme,

I do feel blessed at the love and support I have from family and friends.
I have learned to put myself first. Sad it took a life changing event to learn to say NO, but its been a great lesson. I have told everyone, I will be in chemo coma all weekend and if they need to talk call my partner.
My sweetie cut all my hair off last night and told me I have a perfect head and my bald head is sexy. He is a keeper. :)

[deb_U_taunt]

I only have 6 more chemo treatments left. :) I feel much better this time then the first one. I did the claratin first and didn't get the sinus headache for HOURS. Didn't even get one at all! Just bald and my brain is a bit fuzzy. Sure makes this heat easier to deal wih.

Random thought, breast cancer has to be timed with menopause? Really what kind of joke is that..lol

[Andrew, Jr.]

Debby,

So many of my close friends who endured chemo all have what they labeled as "chemo brain". They start talking and loose track of their thoughts. Others around them help them finish their sentences or ask them something to keep it going.

I can tell you that my sister had it as well. Everyone around her helped her out with conversations. And it does get better after the chemo stops.

She too lost all of her hair, and when it came back it was curly like a poodles. And she loved it! For once she was able to get the look she wanted without a ton of time spent in the bathroom trying to style it.

One day at a time. You are a gift from God and a treasure to all of us here. Never forget that.

I wish you much peace and tons of love,
Andrew

[deb_U_taunt]

Thank you Andrew!

I spoke with someone yesterday, she was just finishing radiation and she had this great curly head of hair and she said her's was str8 as a pin before. She gave me something to look forward to. :) Getting rid of hot rollers would free up a lot of space in the bathroom. :)


Debby,

So many of my close friends who endured chemo all have what they labeled as "chemo brain". They start talking and loose track of their thoughts. Others around them help them finish their sentences or ask them something to keep it going.

I can tell you that my sister had it as well. Everyone around her helped her out with conversations. And it does get better after the chemo stops.

She too lost all of her hair, and when it came back it was curly like a poodles. And she loved it! For once she was able to get the look she wanted without a ton of time spent in the bathroom trying to style it.

One day at a time. You are a gift from God and a treasure to all of us here. Never forget that.

I wish you much peace and tons of love,
Andrew

[Andrew, Jr.]

Debby,

You are most welcome! :bunchflowers:

If you need any support, just let me know. I am full of support for anyone going thru cancer. I have experienced more than most know of online.

Much love and peace,
Andrew

[Andrew, Jr.]

Debby,

I got your message, and I thank you. I added you onto my friends list. God bless you.

Much love and peace,
Andrew

[deb_U_taunt]

Been a great day!! Day two after chemo and feeling great this time. I cleaned house with the wonderful help of my 10 and 12 year old nieces. Tired but happy. :) Bald and strong.

[Novelafemme]

Please keep my friend Amy's little boy Ben in your thoughts as he has surgery to remove another tumor in his brain. This little guy is only 6 and his brain cancer is back for the second time. Let's pray this is the last time he will ever have to go through this!

[deb_U_taunt]

Please keep my friend Amy's little boy Ben in your thoughts as he has surgery to remove another tumor in his brain. This little guy is only 6 and his brain cancer is back for the second time. Let's pray this is the last time he will ever have to go through this!

lots of hugs, prayers, love and peace your way to you and your's

[Dominique]

Been a great day!! Day two after chemo and feeling great this time. I cleaned house with the wonderful help of my 10 and 12 year old nieces. Tired but happy. :) Bald and strong.


This is good news. Fight the fight!

[deb_U_taunt]

This is good news. Fight the fight!

Thank you :) Been tired today, but its our support groups tonight and I will drag myself out, if need be. I am having a hard time putting on hats and scarves in this heat, so going bald and strong to the meeting.

[Novelafemme]

Thank you :) Been tired today, but its our support groups tonight and I will drag myself out, if need be. I am having a hard time putting on hats and scarves in this heat, so going bald and strong to the meeting.


YAY!!! It's WAY too hot here in AZ to do anything but go bald! :) Have a great session tonight!

[deb_U_taunt]

YAY!!! It's WAY too hot here in AZ to do anything but go bald! :) Have a great session tonight!

Sunscreen!!!! Didn't think at first. Could have been a bad look. A peeling baldhead. OOPS

[Andrew, Jr.]

Debby,

I used to take Dino, my mini pin, in his stroller, and I would roll him around in the outdoor garden at NIH with my sister. She had a ball with Dino, and that stroller! I will always treasure that memory.

[deb_U_taunt]

Debby,

I used to take Dino, my mini pin, in his stroller, and I would roll him around in the outdoor garden at NIH with my sister. She had a ball with Dino, and that stroller! I will always treasure that memory.


Andrew, that just had to be the sweetest sight. :)

I have to say, its been great being home a lot more with the dogs.

[deb_U_taunt]

Even bald, I don't look remotely butch. At least, it could have made me look like I had even a little street cred, instead of an old bald woman. lol

[Andrew, Jr.]

Hi Debby,

There is an organization called "Hope in Bloom". It is located in Boston, but I believe there are other folks associated with them in other states. What they do is go out and create gardens, laberinths, etc. for those who are enduring breast cancer (mainly). They go out and do everything start to finish. It is all a gift for the patient. Most of the volunteers are those who lost someone they loved to cancer. I haven't had time to research this group online, but hope too. Let me know what you find out. They were on TV this afternoon, and it was just so heartwarming. :rrose:

I hope you are feeling good. I am sending you positive energy, and only goodness your way. You are in my thoughts and prayers.

Much love and peace,
Andrew

[deb_U_taunt]

Thank you! What a wonderful site: http://www.hopeinbloom.org/index.htm
They currently are only in Mass, but WOW. I have a friend who landscapes and I think her and I need to talk.
I have worked with United Way to paint and clean up yards over the years for disabled, but nothing as pretty as some of these gardens.

They currently are only in Mass, but WOW. I have a friend who landscapes and I think her and I need to talk.

Thank you Andrew to you and your's

Hi Debby,

There is an organization called "Hope in Bloom". It is located in Boston, but I believe there are other folks associated with them in other states. What they do is go out and create gardens, laberinths, etc. for those who are enduring breast cancer (mainly). They go out and do everything start to finish. It is all a gift for the patient. Most of the volunteers are those who lost someone they loved to cancer. I haven't had time to research this group online, but hope too. Let me know what you find out. They were on TV this afternoon, and it was just so heartwarming. :rrose:

I hope you are feeling good. I am sending you positive energy, and only goodness your way. You are in my thoughts and prayers.

Much love and peace,
Andrew

[DapperButch]

Hi, Debby. I am glad to hear that your chemo is manageable. I was lucky in that regard too and for the first several treatments I would go to work afterwards!

At some point along the way I decided that was not the best thing. I had a decent amount of agitation due to the steroids in the chemo, so I wouldn't go back to work after my chemo in the morning.

Andrew - I have heard it called "chemo fog". Even though I finished my chemo 2 months ago, it is still hanging around. Yesterday and today it was especially bad, for some reason. It is getting better though, as you said.

Hang in there, Debby! One day at a time!

[deb_U_taunt]

Dapper,

I heard the chemo fog/chemo brain can hang around for as much as a year afterwards. Its frustrating to forget midsentence where I am going. lol It feels like its a bit harder for those close to me, sometimes.

Didn't think about the steriods associated and why I felt like I was being such a bitch yesterday. hmmmm I was having a low day yesterday, too.

And I made the decision, if it gets too much working that I will stop, too.

Prayers to you too Dapper :)

Hi, Debby. I am glad to hear that your chemo is manageable. I was lucky in that regard too and for the first several treatments I would go to work afterwards!

At some point along the way I decided that was not the best thing. I had a decent amount of agitation due to the steroids in the chemo, so I wouldn't go back to work after my chemo in the morning.

Andrew - I have heard it called "chemo fog". Even though I finished my chemo 2 months ago, it is still hanging around. Yesterday and today it was especially bad, for some reason. It is getting better though, as you said.

Hang in there, Debby! One day at a time!

[clay]

Warm hugs to all you GORGEOUS, sexy women with the lovely bald heads! What an incredibly beautiful group you ALL are! Isn't it amazing how wonderful YOU ALL are!! Such a lovingly, positive group!
I lost my own lovely wife March 16, 2009 to Stage IV breast Cancer with Mets. to Liver/Lung/Bone/Brain. She was diagnosed at Stage IV Jan. 08, 2007 and told to "get affairs in order, make last plans, etc. Well the big C just didn;t know whom it had chosen to mess with..she hung on 26 months. Initially she had 40 rad. tx's. to shoulder,hip, neck, and breast. Then Chemo...she was also a pioneer for the drug Tykerb! Chemo went on the entire 26 months. Rad was with another 18 tx.'s July 2008 after FOUR brain tumors were found. Liver failure is what took her. She was never hospitalized excpet one night when the tumors were found. Both of us are Nurses! She wanted to be home and to die at home, with me with her. That was possible and I cherish those 26 months. She asked to be cremated and our ashes be together when I die. Her one wish was that when I gave her eulogy at her Memorial Service that I play Bagpipes version of Amazing Grace, I hope You Dance, and Wind Beneath my Wings. She asked that I tell the folks when I played the Amazing Grace song that she would be in heaven smiling down on us as she had had to endure that sad song over the years and cry...now she could laugh at us...!!
Anyway she was one amazingly incredible trooper...positive from the start to end...never once complaining, always upbeat, happy....and so full of life and joy! She was a brilliant RN...had Mensa intelligence! We had 15 years of a wonderfully healthy, happy, loving life! I have taken the last two and a half years to heal..and I am ready to be in love again....with the right woman! I am in no hurry...and I want to have a healthy, happy loving relationship again!
I send each and every one of you a very special hug....and FIGHT the GOOD fight, folks!!! Her one wish was that I NOT tell people she lost her battle with cancer, but that she passed her torch on to another!!! So to those of you who now carry that torch....do so proudly and FIGHT! In memory of my lovely wife, Cathy! Clay

[deb_U_taunt]

Thank you. :bunchflowers:

Warm hugs to all you GORGEOUS, sexy women with the lovely bald heads! What an incredibly beautiful group you ALL are! Isn't it amazing how wonderful YOU ALL are!! Such a lovingly, positive group!
I lost my own lovely wife March 16, 2009 to Stage IV breast Cancer with Mets. to Liver/Lung/Bone/Brain. She was diagnosed at Stage IV Jan. 08, 2007 and told to "get affairs in order, make last plans, etc. Well the big C just didn;t know whom it had chosen to mess with..she hung on 26 months. Initially she had 40 rad. tx's. to shoulder,hip, neck, and breast. Then Chemo...she was also a pioneer for the drug Tykerb! Chemo went on the entire 26 months. Rad was with another 18 tx.'s July 2008 after FOUR brain tumors were found. Liver failure is what took her. She was never hospitalized excpet one night when the tumors were found. Both of us are Nurses! She wanted to be home and to die at home, with me with her. That was possible and I cherish those 26 months. She asked to be cremated and our ashes be together when I die. Her one wish was that when I gave her eulogy at her Memorial Service that I play Bagpipes version of Amazing Grace, I hope You Dance, and Wind Beneath my Wings. She asked that I tell the folks when I played the Amazing Grace song that she would be in heaven smiling down on us as she had had to endure that sad song over the years and cry...now she could laugh at us...!!
Anyway she was one amazingly incredible trooper...positive from the start to end...never once complaining, always upbeat, happy....and so full of life and joy! She was a brilliant RN...had Mensa intelligence! We had 15 years of a wonderfully healthy, happy, loving life! I have taken the last two and a half years to heal..and I am ready to be in love again....with the right woman! I am in no hurry...and I want to have a healthy, happy loving relationship again!
I send each and every one of you a very special hug....and FIGHT the GOOD fight, folks!!! Her one wish was that I NOT tell people she lost her battle with cancer, but that she passed her torch on to another!!! So to those of you who now carry that torch....do so proudly and FIGHT! In memory of my lovely wife, Cathy! Clay

[clay]

YOU are so very welcome! March on in your fight..carry YOUR torch very high! Smoke a Swisher Sweet and have a dark beer in HONOR of my wife, Cathy!!! YOU are beautiful, Debby!!!! :bunchflowers: right back at ya!! ClayThank you. :bunchflowers:

[deb_U_taunt]

YOU are so very welcome! March on in your fight..carry YOUR torch very high! Smoke a Swisher Sweet and have a dark beer in HONOR of my wife, Cathy!!! YOU are beautiful, Debby!!!! :bunchflowers: right back at ya!! Clay

Clay, so will a Swisher and merlot work?

[clay]

Clay, so will a Swisher and merlot work?Oh MOST definitely. She loved Merlot as well!!! I still have a half a carton of Swisher sweets packs of hers.....:( THANKS! Clay

[Andrew, Jr.]

I am so happy that we can support each other in this. It is wonderful! :hangloose:

Have a wonderful day!

[deb_U_taunt]

I am bored with being laid up already and I still have 6 treatments to go. I don't ring the fucking bell until Sept 16th and I am already buggy. I still have radiation and surgery after that!!!!!!! I am pissy and bored. I really need a new hobby, one I can do inside. ARGGGGG

[deb_U_taunt]

It's a new day. Yesterday, I got mad at what was feeling like my life was put on hold by cancer. Today, woke up with a better attitude.

[Andrew, Jr.]

Hi Debby,

Good Morning! I am restricted by my mobility, and misaligned hips. It is a struggle being active. I can understand how you feel. One thing I took up is birdwatching, plus I have my 2 squirrels, Hank and Honey, who I feed. You may want to look into these for hobbies. At one time I participated in a ferel cat community behind my home until a nasty neighbor called Animal Control to have the cats removed. Grrrrrrrr

There are some days when my body just hurts so very badly, and most people just don't get it when they are working, have kids, and a busy lifestyle. Plus, in my case my age is a factor being close to 50 yo. I think it makes a huge difference in perspective.

I wish you much peace and love, :praying: :vigil:
Andrew

[deb_U_taunt]

I truly understand. I feel like my life is in limbo. I am 51 and not ready to be old. Elevation is too high here for squirrels, but we feed the ferel cats and so does another neighbor. We have trapped and fixed quite a few of them.
Hope you are able to put your feet up and heal. Sounds like you are as blessed as I am with a wonderful, caring partner. :)




Hi Debby,

Good Morning! I am restricted by my mobility, and misaligned hips. It is a struggle being active. I can understand how you feel. One thing I took up is birdwatching, plus I have my 2 squirrels, Hank and Honey, who I feed. You may want to look into these for hobbies. At one time I participated in a ferel cat community behind my home until a nasty neighbor called Animal Control to have the cats removed. Grrrrrrrr

There are some days when my body just hurts so very badly, and most people just don't get it when they are working, have kids, and a busy lifestyle. Plus, in my case my age is a factor being close to 50 yo. I think it makes a huge difference in perspective.

I wish you much peace and love, :praying: :vigil:
Andrew

[Novelafemme]

A question for those who have had steroids in their chemo protocol. Has anyone dealt with the manic high/low side effect and if so, is there anything you can do to counter-balance it? no problem here with the high part but the low part is brutal! :(

[Tommi]

A question for those who have had steroids in their chemo protocol. Has anyone dealt with the manic high/low side effect and if so, is there anything you can do to counter-balance it? no problem here with the high part but the low part is brutal! :(

Hopefully someone experiencing that can respond, in relation the manic side effects due to chemo. I am hypermanic with no chemo, but that's another brutal world.

No experience, but I found this when I Googled. "chemotherapy are given Dexamethasone to counteract certain side-effects of .... irritability, euphoria, mania; "

[deb_U_taunt]

A question for those who have had steroids in their chemo protocol. Has anyone dealt with the manic high/low side effect and if so, is there anything you can do to counter-balance it? no problem here with the high part but the low part is brutal! :(

I didn't put that together at first. I thought it was depression from cancer, etc. The Dr suggested antidepressants, but I am too nervous about coming off of them later.

I am blessed and have a partner that reminds me to breathe and take a break. We have both joined support groups and its made all the difference. There is also a Cancer Wellness Center with FREE massage and yoga!!!!!

BTW, if it gets to me to much, I just scream. Scares the dogs, but sometimes it feels like the thing to do. Seems to motivate me to get out of myself.

[Tommi]

I am bored with being laid up already and I still have 6 treatments to go. I don't ring the fucking bell until Sept 16th and I am already buggy. I still have radiation and surgery after that!!!!!!! I am pissy and bored. I really need a new hobby, one I can do inside. ARGGGGG

I just ordered this clay, and it is in the mail. LWF said she absolutely loves it. I am going to make small shields with raised family crests, and some small masks.
http://www.pearlpaint.com/shop-Air-Dry-Clay_2999_2963.html

Air Dry Clay http://www.artistsupplysource.com/images/T/Small-2610.jpg

Like all moist clays, Boneware is easily kept soft and pliable as long as desired if moist with water and covered with a damp cloth while not in use. Finished pieces become bone hard when allowed to dry. No firing, no baking necessary. May be decorated with tempera, oil paints, and enamels. Packed moist and ready to use.

[Dominique]

I am bored with being laid up already and I still have 6 treatments to go. I don't ring the fucking bell until Sept 16th and I am already buggy. I still have radiation and surgery after that!!!!!!! I am pissy and bored. I really need a new hobby, one I can do inside. ARGGGGG

Has anyone introduced you to second life? (It's a virtual world game, big glbtg community, many members from here are on there) The best part about second life is it is 24 hours a day...... go to u tube and watch a few tutorials of second life, so you can get an idea of what it is.

I'm not extremely second life literate, i was barely able to walk, but i'm sure we can get you in there and registered ect....

[deb_U_taunt]

I just ordered this clay, and it is in the mail. LWF said she absolutely loves it. I am going to make small shields with raised family crests, and some small masks.
http://www.pearlpaint.com/shop-Air-Dry-Clay_2999_2963.html

Air Dry Clay http://www.artistsupplysource.com/images/T/Small-2610.jpg

Like all moist clays, Boneware is easily kept soft and pliable as long as desired if moist with water and covered with a damp cloth while not in use. Finished pieces become bone hard when allowed to dry. No firing, no baking necessary. May be decorated with tempera, oil paints, and enamels. Packed moist and ready to use.

That is a great idea!! I am taking a trip to some craft stores this afternoon and will loof for it..THANK YOU Tommi! This looks like what I will need to keep my mind busy :) wonder if it can handle the outdoors....mind is running with it already..lol

[deb_U_taunt]

Has anyone introduced you to second life? (It's a virtual world game, big glbtg community, many members from here are on there) The best part about second life is it is 24 hours a day...... go to u tube and watch a few tutorials of second life, so you can get an idea of what it is.

I'm not extremely second life literate, i was barely able to walk, but i'm sure we can get you in there and registered ect....

Thank you, I will check it out, too. I know my niece plays second life, so she will be happy to clue me in.

[Tommi]

That is a great idea!! I am taking a trip to some craft stores this afternoon and will look for it..THANK YOU Tommi! This looks like what I will need to keep my mind busy :) wonder if it can handle the outdoors....mind is running with it already..lol

I think it can. This product looks and feels awesome. I have a small face LeftWriteFemme made and sent me as an example before I ordered 50 pounds online. It feels solid , just like stoneware. I sculpt in other clays that have to be fired and this one does not, so I can't wait till it gets her on the 13th.

[DapperButch]

That is a great idea!! I am taking a trip to some craft stores this afternoon and will loof for it..THANK YOU Tommi! This looks like what I will need to keep my mind busy :) wonder if it can handle the outdoors....mind is running with it already..lol

Don't forget to exercise even when you are tired. It will help with the fatigue. Even just a slow walk around the block.

[deb_U_taunt]

I think it can. This product looks and feels awesome. I have a small face LeftWriteFemme made and sent me as an example before I ordered 50 pounds online. It feels solid , just like stoneware. I sculpt in other clays that have to be fired and this one does not, so I can't wait till it gets her on the 13th.

I bookmarked in case I didn't find it my craft store search. Price is good. I just keep picturing my new queer friendly garden gnomes. lol

[deb_U_taunt]

Don't forget to exercise even when you are tired. It will help with the fatigue. Even just a slow walk around the block.

Our dogs make sure that happens. :)

[Tommi]

I bookmarked in case I didn't find it my craft store search. Price is good. I just keep picturing my new queer friendly garden gnomes. lol

AHhhhh. GREAT IDEA>>>
:pile: :LGBTQFlag: :LGBTQFlag:

[deb_U_taunt]

AHhhhh. GREAT IDEA>>>
:pile: :LGBTQFlag: :LGBTQFlag:

Good thing for no HOA. lol

[Tommi]

Just received the latest issue of CURE magazine. Always something new, always something to remind me about taking care of me, and ART stuff too. It's also available as an eMagazine at --> (http://curetoday.com/index.cfm/fuseaction/magazine.show/id/15)

Link for a Free subscription* (https://cur.magserv.com/cgi-bin/subscribe?qt=new) I would like a FREE subscription of CURE. (Free to cancer patients, survivors, and caregivers in the U.S.)

[DapperButch]

Just received the latest issue of CURE magazine. Always something new, always something to remind me about taking care of me, and ART stuff too. It's also available as an eMagazine at --> (http://curetoday.com/index.cfm/fuseaction/magazine.show/id/15)

Link for a Free subscription* (https://cur.magserv.com/cgi-bin/subscribe?qt=new) I would like a FREE subscription of CURE. (Free to cancer patients, survivors, and caregivers in the U.S.)

Thanks, Tommi! I went and signed up.

[Tommi]

A happy face on a prescription blank, inside an envelope from my Oncologist with my annual follow-up to uterine cancer.

I am still anxious when I open it. A little check mark on a little box beside:

"All test results are negative" and a hand drawn happy face.

Seven years, cancer free. .

:moonstars:

[deb_U_taunt]

Just received the latest issue of CURE magazine. Always something new, always something to remind me about taking care of me, and ART stuff too. It's also available as an eMagazine at --> (http://curetoday.com/index.cfm/fuseaction/magazine.show/id/15)

Link for a Free subscription* (https://cur.magserv.com/cgi-bin/subscribe?qt=new) I would like a FREE subscription of CURE. (Free to cancer patients, survivors, and caregivers in the U.S.)

I signed up too :) thank you very much!!

[deb_U_taunt]

A happy face on a prescription blank, inside an envelope from my Oncologist with my annual follow-up to uterine cancer.

I am still anxious when I open it. A little check mark on a little box beside:

"All test results are negative" and a hand drawn happy face.

Seven years, cancer free. .

:moonstars:

That is the shit. Great to have a Dr with a sense of humor.

[deb_U_taunt]

Hard evening. My partner has been sober for several years. Tonight he isn't. His family is his slippery place and that is where he has been.
Yesterday, I had my 3rd of 8 chemo treatments and I don't feel he is going to strong enough to deal with this.
I am scared as all fuck, that I will be doing this alone. My family is 5 states away and I am covered by medical here.
Glad I am strong. I have been thinking tonight. I can take medical transport to chemo, etc. I have wonderful friends to help, I just need to ask!
Why the fuck now? Feels so out of the blue.

[DapperButch]

Hi, Debby.

I am so sorry to hear this is happening. I would suggest that it is his anxiety and fear about you being ill that as perhaps a reason that he decided to drink.

Even if there is no danger of losing you (I don't recall you saying your diagnosis/prognosis, but I am assuming you are not terminal), something like cancer can create the fear of loss.

I am sorry this is happening when you need him. Hopefully, he will go to the cancer support group he has and get support around the cancer. If he is in AA, I hope he goes back to that, too. Does he have a sponsor?

I am glad that you have friends there to support you. Hang in there. :rrose:





Hard evening. My partner has been sober for several years. Tonight he isn't. His family is his slippery place and that is where he has been.
Yesterday, I had my 3rd of 8 chemo treatments and I don't feel he is going to strong enough to deal with this.
I am scared as all fuck, that I will be doing this alone. My family is 5 states away and I am covered by medical here.
Glad I am strong. I have been thinking tonight. I can take medical transport to chemo, etc. I have wonderful friends to help, I just need to ask!
Why the fuck now? Feels so out of the blue.

[deb_U_taunt]

Hi, Debby.

I am so sorry to hear this is happening. I would suggest that it is his anxiety and fear about you being ill that as perhaps a reason that he decided to drink.

Even if there is no danger of losing you (I don't recall you saying your diagnosis/prognosis, but I am assuming you are not terminal), something like cancer can create the fear of loss.

I am sorry this is happening when you need him. Hopefully, he will go to the cancer support group he has and get support around the cancer. If he is in AA, I hope he goes back to that, too. Does he have a sponsor?

I am glad that you have friends there to support you. Hang in there. :rrose:

I am floored and heartbroken. The day after I had chemo and two days after our anniversary. He told his family, he can't be here and watch me die. I have invasive ductal carcinoma, stage 2B, triple negative and grade 3. I am not dying!
And no he hasn't been to mtgs lately. I know he has spoken with his sponsor.

[Tommi]

I am floored and heartbroken. The day after I had chemo and two days after our anniversary. He told his family, he can't be here and watch me die. I have invasive ductal carcinoma, stage 2B, triple negative and grade 3. I am not dying!
And no he hasn't been to mtgs lately. I know he has spoken with his sponsor.
((((((((Debby and your SO))))))))))))))
Amazing what dynamics come into play when we are members of this special club we did not ask to become members of.
Maybe this is his way of dealing with the pain YOU are going through. I know partners feel helpless and sometimes act out in the worst ways, and say things that need to be discussed. I know I can't change another's way of dealing with issues, but I know I have to take care of myself.

My best advice...Al Anon. There are gay meetings in some area's, and there are on-line meetings. It really is One Day at a Time.
http://webcache.googleusercontent.com/search?q=cache:aM6gGwow968J:www.al-anon.alateen.org/S70web.html+gay+al+anon&cd=2&hl=en&ct=clnk&gl=us&client=safari&source=www.google.com

[mustangjeano]

Debby, I am so sorry to read that your guy is not there for you right now. Hopefully he will get some help and be back by your side. I was surprised to find out that this happens more frequently than I would have thought. I ended up going to a counselor who specializes in cancer patients in order to understand my ex and best friend who baled on me in the middle of my cancer treatment. Please ask your friends for ANYTHING you need---whether it is someone to take you to your treatments, or a shoulder to cry on, or someone to watch a funny movie together. Also. I found it really helpful to see a counselor who specialized in cancer patient's issues. Your guy should find someone to talk to about his feelings as well--a safe place where he can express his fears. Cancer affects the whole family. One thing I used to tell myself on the way to my chemo appointments was "It won't always be like this" ---my mantra
I will be sending lots of loving, healing energy to you and your guy.
Jeano

[Novelafemme]

I am floored and heartbroken. The day after I had chemo and two days after our anniversary. He told his family, he can't be here and watch me die. I have invasive ductal carcinoma, stage 2B, triple negative and grade 3. I am not dying!
And no he hasn't been to mtgs lately. I know he has spoken with his sponsor.

{{{{{{{{Debby}}}}}}}}}} I wish I could give you a real hug right now. Like mustangjeano said, it isn't always going to be like this...and it won't because things will and do get better! The patient advocate at the chemo clinic had stage 3c ovarian cancer and has been cancer free for almost 6 years now, so no, you are in no way dying!! I can tell you are a strong woman and you will keep the faith and keep going. Can I pm you my phone number in case you ever want to talk?

Much love, support and prayer for you right now, dear one!

[Novelafemme]

I didn't put that together at first. I thought it was depression from cancer, etc. The Dr suggested antidepressants, but I am too nervous about coming off of them later.

I am blessed and have a partner that reminds me to breathe and take a break. We have both joined support groups and its made all the difference. There is also a Cancer Wellness Center with FREE massage and yoga!!!!!

BTW, if it gets to me to much, I just scream. Scares the dogs, but sometimes it feels like the thing to do. Seems to motivate me to get out of myself.

Screaming works GREAT :) YAY for the ability to use our voices as a release, huh!!

A few things about anti-depressants and meds. When I first started having panic attacks before my divorce, I had NEVER taken anything other than the occasional aspirin when a headache got too bad. I was all about alternative medicine and holistic therapy. So, the long and short of it was that I suffered tremendously for nearly two months. I lost 20lbs, couldn't eat, couldn't sleep, had two small children and a full time job to attend to. Finally, after seeing a wonderful doctor, I eased into taking a med that helped me wake up without that overwhelming sense of dread and soul crushing anxiety. And let me tell you, it made all the difference in the world! I also began talk therapy and sort of over-hauled my life and started dusting out the creepy-crawlies that were lurking in dark corners, but that med is what enabled me to do so...it helped me cope during one of the darkest periods of my life. The most important thing for me to keep in mind was that no matter what, I did not want to be like my mother, who would take to her bed for months at a time when us kiddos were little. I wanted to be there for my girls and be there for me!! I keep taking my little pill...every morning with my coffee...I call it my happy pill. :) I feel so blessed that we have drugs that can help us along through the difficult times and as long as I need it, I will continue to live better through chemistry, one day at a time. :rrose:

[deb_U_taunt]

Screaming works GREAT :) YAY for the ability to use our voices as a release, huh!!

A few things about anti-depressants and meds. When I first started having panic attacks before my divorce, I had NEVER taken anything other than the occasional aspirin when a headache got too bad. I was all about alternative medicine and holistic therapy. So, the long and short of it was that I suffered tremendously for nearly two months. I lost 20lbs, couldn't eat, couldn't sleep, had two small children and a full time job to attend to. Finally, after seeing a wonderful doctor, I eased into taking a med that helped me wake up without that overwhelming sense of dread and soul crushing anxiety. And let me tell you, it made all the difference in the world! I also began talk therapy and sort of over-hauled my life and started dusting out the creepy-crawlies that were lurking in dark corners, but that med is what enabled me to do so...it helped me cope during one of the darkest periods of my life. The most important thing for me to keep in mind was that no matter what, I did not want to be like my mother, who would take to her bed for months at a time when us kiddos were little. I wanted to be there for my girls and be there for me!! I keep taking my little pill...every morning with my coffee...I call it my happy pill. :) I feel so blessed that we have drugs that can help us along through the difficult times and as long as I need it, I will continue to live better through chemistry, one day at a time. :rrose:



ARRRRGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG

[deb_U_taunt]

((((((((Debby and your SO))))))))))))))
Amazing what dynamics come into play when we are members of this special club we did not ask to become members of.
Maybe this is his way of dealing with the pain YOU are going through. I know partners feel helpless and sometimes act out in the worst ways, and say things that need to be discussed. I know I can't change another's way of dealing with issues, but I know I have to take care of myself.

My best advice...Al Anon. There are gay meetings in some area's, and there are on-line meetings. It really is One Day at a Time.
http://webcache.googleusercontent.com/search?q=cache:aM6gGwow968J:www.al-anon.alateen.org/S70web.html+gay+al+anon&cd=2&hl=en&ct=clnk&gl=us&client=safari&source=www.google.com

I do go to Alanon. LOVE Alanon and I know this isn't on me. Some people just don't have the ovaries.

[deb_U_taunt]

Debby, I am so sorry to read that your guy is not there for you right now. Hopefully he will get some help and be back by your side. I was surprised to find out that this happens more frequently than I would have thought. I ended up going to a counselor who specializes in cancer patients in order to understand my ex and best friend who baled on me in the middle of my cancer treatment. Please ask your friends for ANYTHING you need---whether it is someone to take you to your treatments, or a shoulder to cry on, or someone to watch a funny movie together. Also. I found it really helpful to see a counselor who specialized in cancer patient's issues. Your guy should find someone to talk to about his feelings as well--a safe place where he can express his fears. Cancer affects the whole family. One thing I used to tell myself on the way to my chemo appointments was "It won't always be like this" ---my mantra
I will be sending lots of loving, healing energy to you and your guy.
Jeano

I spoke with a counselor at the cancer center today. This isn't so uncommon that a spouse/partner bales. Sad. I am blessed with great support. Very blessed.

[deb_U_taunt]

Some moments, this just sucks.

[deb_U_taunt]

I had my last a/c treatment, so no more of the red devil!!!!!! So, I am at the half way mark through chemo. Now 4 taxol and done with chemo on Sept 16th. Feels great to be half way there. :)

[DapperButch]

I had my last a/c treatment, so no more of the red devil!!!!!! So, I am at the half way mark through chemo. Now 4 taxol and done with chemo on Sept 16th. Feels great to be half way there. :)

AWESOME! Seems as though it is "hump day" for you!

Congrats!

Btw, I love you sig line...so true, so true. And so many don't know this.

[deb_U_taunt]

AWESOME! Seems as though it is "hump day" for you!

Congrats!

Btw, I love you sig line...so true, so true. And so many don't know this.

The sig line is a Native American proverb. Its one I have hanging in my cube at work, too. :)

It feels like a hump day. I took a nap after and feel great so far. It is amazing how much attitude can make all the difference.

[mustangjeano]

Congratulations on being half way thru chemo. Great job!!!
I think of you often .
Jeano:

[deb_U_taunt]

Feeling really good this time too! DAMN

[Tommi]

Feeling really good this time too! DAMN

Damn good.Everybody dance!! :hangloose:
http://www.bemidjistate.edu/conferences/physical_education/gifs/dancing_penguins.gif

[deb_U_taunt]

Damn good.Everybody dance!! :hangloose:
http://www.bemidjistate.edu/conferences/physical_education/gifs/dancing_penguins.gif

Sept 16th I will be ringing the bell and will post a pic! By Jan I am hoping to be finished with everything and have a bright new year.

[JAGG]

Damn good.Everybody dance!! :hangloose:
http://www.bemidjistate.edu/conferences/physical_education/gifs/dancing_penguins.gif

That's great Debby! Hey look penguins!!!!! hahah or is that a dove , or wait no quail, hahah never mind.

[deb_U_taunt]

That's great Debby! Hey look penguins!!!!! hahah or is that a dove , or wait no quail, hahah never mind.

It will be a party for sure. I haven't been able to drink a cup of coffee for months. lol

[DapperButch]

It will be a party for sure. I haven't been able to drink a cup of coffee for months. lol

Were you told to not drink coffee during chemo? :confused:

[deb_U_taunt]

Were you told to not drink coffee during chemo? :confused:

It was adding to some side effects. lol It was not pretty.

[deb_U_taunt]

Had my first Taxol today. I only have 3 more chemo treatments to go!!!

I am starting to loose my fingernails. Don't remember reading about this side effect. Gotta say, this one bothers me more then losing my hair.

Bride side: Taxol is supposed to be easier on the stomach, so maybe I can have a cup of coffee, again.

[deb_U_taunt]

Okay, so a Taxol side effect is bone pain. It started Saturday night and by Monday, when I got to the Dr, the pain had gotten a good hold on me. I didn't get the pain under control until Tuesday. I am hoping like hell this isn't going to be the norm.
Bright side: The bone pain only lasted 5 days and this is all temporary.

[JustJo]

Hey everybody :)

I hesitated to post in here because I don't have cancer, and I can't consider myself a caregiver since I'm 1300 miles away as my mother is going through this....but I do find myself dealing with bucket loads of the emotional crap...so thought I would anyway. Hope that's okay. :rrose:

I've posted parts of this in other places, but...the Readers Digest version...my mother has had Crohn's disease basically all of my life, and the first "she's going to die" scare came when I was 7. Obviously, she didn't die...and through a very many ups and downs and scares and hospitalizations and surgeries and such...she's still here as I approach the 50 year mark.

Last fall (almost a year ago now...wow) she started having pain, losing weight, lots of stuff that she's been through before and assumed it was the Crohn's. She put off going to the doctor and addressing it (as usual for her) and tried to tough it out. She did for months...but continued to lose weight.

When she came to see us in the spring she looked incredibly thin, felt horrible, couldn't eat, etc. She went home promising to go to the doctor, which she did. Many tests later....unsure what's going on...probably Crohn's...blah blah blah.

In late May a friend ran into her in the medical center hallway and basically said "screw your doctor, we're going to the ER." They did, and she was admitted from there.

Two weeks of hospitalization with IVs of potassium, antibiotics, transfusions, tube feeding, etc. to get her strong enough for surgery...we've been through this before about 6 or 7 years ago when she had the colostomy....then surgery.

She was in the hospital a week more, sent home...telling me she's fine.

Then, a panic phone call from my estranged sister followed (the next day) by a note in the mail (long, complicated story but that's my mother)....to tell me it's cancer and she's known since she was in the hospital and before the surgery.

No other information except that the oncologist says it's "pretty well advanced" and she has to have 6 months of chemo. She's doing that now, but she's also making plans like she's dying...and talks like this is the thing that's going to take her out.

I'm finding this incredibly hard for a whole variety of reasons that I can't even explain. She and I have had a very difficult relationship...she's a narcissist, and my childhood was full of the craziness that goes with that...and the damage that follows. As horrible as it sounds, part of me is hoping the chemo will cure her, and part of me is wishing it was just over with.

We talk a couple times a week. She's coming to visit, probably in October - her request for an extended one-on-one visit (traditionally she can tolerate a 3 day visit.....maybe 4). She's done her will. She wants me to accumulate all the funny pictures of her and my son (they've always been close) so she can make an album of just the two of them....for me to give him after she dies.

Her illness has also opened the door back up to communication with my sister....more difficult and painful even than communication with my mother. She is trying to pretend that we're loving sisters...and has the astounding ability to "forget" or whitewash the emotional and physical abuse she heaped on me for years...and what she did to my son (which ended contact between us).

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

[DapperButch]

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

One foot in front of the other.

But, I know that you are coming from a different place from me.

It makes sense to me Jo that in the face of your mother's (possible) terminal illness, that a lot of things are going to come up for you. I think it happens to every person that is being faced with a significant loss.

Since your relationship is so complicated and there is so many left over feelings about the past, it makes it even more complicated, I think.

All of the "symptoms" you describe can really fall under "loss' when the death of a person you have a complicated relationship with ends. And I am not calling your mother "terminal" (did she tell you the 6 month thing, or the oncologist himself/herself?), but I wonder if being clear on her prognosis would help things a bit for you. Being in the gray area is hard.

The best suggestion I could give you is to consider counseling to help you move through all of this. I know that is a pat answer, but....

If you are open to that, look for a therapist who specializes in working with people/partners who have cancer. At the place where I received my chemo, they had two psychologists that I could have seen. Really though, any therapist who works with loss should have the skill set to help a person work through all their mixed feelings about someone who was not so kind to them, passing.

Also, most importantly, give yourself a break. Right now you may not be able to be the best employee, partner, mother. And that is ok. I suspect that you are a person who feels guilty if she can't be superwoman 24/7, but guess what, sometimes superwoman needs a rest.

Ask your partner to hang in there with you and be there when you need her, but back off when you need her to do that, too. Apologize to your kid if you have less patience than usual...and work..either talk with your boss, or fake it.

Good luck. You WILL get there.

And come in here and talk whenever you like...PLEASE!

[deb_U_taunt]

There is no trick to doing it. Some days I can't do it. I have a friend staying with me for emotional support during chemo, but honestly over having her around all the time. Even with her being my bestie. She is getting on my nerves. I still do all the cooking and cleaning, since she doesn't do that for herself at home, so isn't doing it here. lol My partner left me the day after my third chemo treatment. I am exhausted and burned out.

My mother-in-law is a narcissist, too. And somehow has made this about her. Even sending out prayer requests on facebook and getting condolences sent her way. When I had surgery, she showed up and it stressed her out so much, she checked into the ER with chest pains. (they couldn't find a thing)

I have a sister who doesn't understand why I am choosing to do chemo and radiation and not just go vegan and the gym for treatment.

Sad thing is, the longer I am sick the less I see and hear from people. Then again I have a hard time concentrating enough to have a conversation. So I truly understand what you mean by wanting support and wanting to be left alone. AND crying at the drop of a hat.

I understand why your mom is getting affairs in order. I now have a will and insurance papers are all together in my safe. This is normal, whether you know you will survive or not. Everyone in my cancer support group has done the same thing. It is life changing in how you view things. Life becomes staying in the present and not looking at even next week most of the time. I know I will survive, but doesn't mean there isn't that bit of fear and doubt. Nothing is 100%. My survival rate is not 100%. At my stage it is 81%.

She might be talking about not surviving, but she is making plans to come see you. 'Pretty far advanced' is really vague. Will she share with you the stage and grade of her cancer?

Anyway you can take a break and just be for a weekend? Let your partner take you out for dinner and get a sitter?

Hey everybody :)

I hesitated to post in here because I don't have cancer, and I can't consider myself a caregiver since I'm 1300 miles away as my mother is going through this....but I do find myself dealing with bucket loads of the emotional crap...so thought I would anyway. Hope that's okay. :rrose:

I've posted parts of this in other places, but...the Readers Digest version...my mother has had Crohn's disease basically all of my life, and the first "she's going to die" scare came when I was 7. Obviously, she didn't die...and through a very many ups and downs and scares and hospitalizations and surgeries and such...she's still here as I approach the 50 year mark.

Last fall (almost a year ago now...wow) she started having pain, losing weight, lots of stuff that she's been through before and assumed it was the Crohn's. She put off going to the doctor and addressing it (as usual for her) and tried to tough it out. She did for months...but continued to lose weight.

When she came to see us in the spring she looked incredibly thin, felt horrible, couldn't eat, etc. She went home promising to go to the doctor, which she did. Many tests later....unsure what's going on...probably Crohn's...blah blah blah.

In late May a friend ran into her in the medical center hallway and basically said "screw your doctor, we're going to the ER." They did, and she was admitted from there.

Two weeks of hospitalization with IVs of potassium, antibiotics, transfusions, tube feeding, etc. to get her strong enough for surgery...we've been through this before about 6 or 7 years ago when she had the colostomy....then surgery.

She was in the hospital a week more, sent home...telling me she's fine.

Then, a panic phone call from my estranged sister followed (the next day) by a note in the mail (long, complicated story but that's my mother)....to tell me it's cancer and she's known since she was in the hospital and before the surgery.

No other information except that the oncologist says it's "pretty well advanced" and she has to have 6 months of chemo. She's doing that now, but she's also making plans like she's dying...and talks like this is the thing that's going to take her out.

I'm finding this incredibly hard for a whole variety of reasons that I can't even explain. She and I have had a very difficult relationship...she's a narcissist, and my childhood was full of the craziness that goes with that...and the damage that follows. As horrible as it sounds, part of me is hoping the chemo will cure her, and part of me is wishing it was just over with.

We talk a couple times a week. She's coming to visit, probably in October - her request for an extended one-on-one visit (traditionally she can tolerate a 3 day visit.....maybe 4). She's done her will. She wants me to accumulate all the funny pictures of her and my son (they've always been close) so she can make an album of just the two of them....for me to give him after she dies.

Her illness has also opened the door back up to communication with my sister....more difficult and painful even than communication with my mother. She is trying to pretend that we're loving sisters...and has the astounding ability to "forget" or whitewash the emotional and physical abuse she heaped on me for years...and what she did to my son (which ended contact between us).

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

[JustJo]

Thank you Dapper and Debby :rrose:

It really does help to hear that some of this is normal...for me and for her.

Unfortunately she won't share any information about the stage of her cancer (claims that they didn't tell her...which is nonsense...and that she doesn't want to know...which sounds like her). With HIPAA they won't/can't tell me anything...at her request no one has anything beyond being an emergency contact.

One foot in front of the other is the theme (for both of us I think) at this point. My boss has been totally supportive (it helps that his mother has had 3 bouts with cancer)....which is a big help....although there are a lot of days when I find myself staring at the computer screen and totally unmotivated to do anything for work. Thank goodness I work from home so no one can see me. :)

I'm pretty sure that I'm driving Scoote completely nuts...because I really can't explain why one minute I'm fine and the next I'm truly not. Poor her. It has to be crazy-making.

Anyway...thank you to you both again. It really helps just to be able to talk/write about it.

[deb_U_taunt]

The Dr told her stage and grade, she wasn't listening or like you have said about her, for drama's sake she isn't sharing. My mother-in-law would probably not share either, just in case her's wasn't as bad as the next person's. lol

My boss has been really supportive, too. His mom lost a kidney to cancer last year.

I work from home most of the time, too. Lots of days lately have been spent staring at the wall behind my laptop.

Yep, you are so damn normal.

PM me too if you ever need to talk or vent.

Hugs, Debby


Thank you Dapper and Debby :rrose:

It really does help to hear that some of this is normal...for me and for her.

Unfortunately she won't share any information about the stage of her cancer (claims that they didn't tell her...which is nonsense...and that she doesn't want to know...which sounds like her). With HIPAA they won't/can't tell me anything...at her request no one has anything beyond being an emergency contact.

One foot in front of the other is the theme (for both of us I think) at this point. My boss has been totally supportive (it helps that his mother has had 3 bouts with cancer)....which is a big help....although there are a lot of days when I find myself staring at the computer screen and totally unmotivated to do anything for work. Thank goodness I work from home so no one can see me. :)

I'm pretty sure that I'm driving Scoote completely nuts...because I really can't explain why one minute I'm fine and the next I'm truly not. Poor her. It has to be crazy-making.

Anyway...thank you to you both again. It really helps just to be able to talk/write about it.

[deb_U_taunt]

Damn, you never know what life will throw your way.

[Tommi]

Just Jo,

Yes, this absolutely a great place to write about what is going on. Just a word of encouragement to take care of YOUR emotional ups and downs. Write about it, talk about it, cry about it.

It's really weird when someone you know gets cancer. For them, it is that wake up and smell the coffee time.

For you, it is being on the outside , looking through the window, but , with your Mom, it seems like she has the blinds closed.

My Mom was diagnosed with lung cancer after bouts of pneumonia, etc. SHE did not want to know the stage. We were told it was inoperable, and was not looking very good, and after 3 mos or so, that there would be nothing more they could do for her. Long story short, she lived almost 5 years, and died suddenly of a heart attack, just after a complete good bill of health physical. She had chemo, radiation that first 3 mos, etc.and said she was not ready to die from cancer.

On the other hand , some people really don't want the fight and just go along with what's left of life. Whatever, it is , I have found over the years, working as a volunteer with cancer patients, and at one time in the medical field taking care of them, that people with cancer really just need someone to listen to them, when and if they are ready to talk.

Come back and let us know how you are doing.

Best regards,
Tommi

[deb_U_taunt]

The nurse was able to get a vein on the first try today. :)

Only 2 more chemo treatments left!!!!!!!!!

[Novelafemme]

{{{{Jo}}}}} Cancer drains not only the person it's attacking, but everyone around it as well. Everything you are feeling, thinking, experiencing is totally normal. Even the icky family stuff. People resurface and make appearances in your life and think that it's ok to use the cancer as a bridge over troubled waters...and it really is up to you whether or not to insert parameters and boundaries or not. There are no rules when it comes to cancer. Just remember to take deep breaths and know that things won't always feel this heavy.

[Starbuck]

My friend R just finished her 6th cycle, or 12th treatment of 5 different toxic medications for her non-hodgekins lymphoma in her chest and neck and I was her caregiver. There were hospital stays, times we had to rush her to the ER due to fevers and uncontrollable bone pain, all sorts of things. But the good news is she made it through and her hair is starting to come back in! Many of her good natured friends are "betting" on what color and how it's going to look, whether straight or curly, it was long and straight before. I can't say it was easy, I remembmer sitting with her in the ER, holding her hand crying with her because she was in so much pain and I felt so helpless to help her. Never once did she lose her appreciation for the help she received from the nurses and doctors that came into her room; she always thanked them. What a blessing she is in my life! Thank you, R, for being such an inspiration to me and so many others as you continue your recovery. I love you very much.

[IttyBittyFem]

{{{{Jo}}}}} Cancer drains not only the person it's attacking, but everyone around it as well. Everything you are feeling, thinking, experiencing is totally normal. Even the icky family stuff. People resurface and make appearances in your life and think that it's ok to use the cancer as a bridge over troubled waters...and it really is up to you whether or not to insert parameters and boundaries or not. There are no rules when it comes to cancer. Just remember to take deep breaths and know that things won't always feel this heavy.


Very well said lovely Lady! (f)

[DapperButch]

Jo, how are you doing? How is your mom?

[JustJo]

Jo, how are you doing? How is your mom?

Hi Dapper, and thank you.

She's not doing well. Her weight is down to 101, and she's been feeling sick, exhausted and dizzy. Some of it was dehydration (a perennial problem after an iliostomy and colostomy....she has no colon left at all and that's where most fluid reabsorption happens). She went in and had IVs of fluids and that helped some but she still feels very rough. Walking up one flight of stairs to her bedroom leaves her out of breath...although she claims she can walk well enough that she refused when I said we'd meet her with a wheelchair at the airport (Orlando is big and there's lots of walking).

We're moving up the timeframe for her trip down here...so it'll be end of September when the kids here have a 4 day weekend, so Rooster can spend more time with her as well. She wants to go see Miami and Key West, although it will mostly be a driving tour I'm sure, peppered with restaurants and finding nice places to sit and visit rather than adventuring around.

Luckily her friends are being incredibly wonderful, and I owe all of them a huge debt....they're bringing her meals, mowing her lawn, doing her shopping, tidying up her house...whatever she needs.

She still hasn't told me stage, etc. and "doesn't want to know" herself...so I really don't feel like I can push it. She did tell me that the oncologist, when discussing the chemo, said that without it he'd give the cancer an 80-90% chance of recurring....so refusal wasn't really an option. That sounds like it was pretty bad to me. She hasn't said more about the "belly wash" procedure....so I'm not sure if they're planning that after she finishes the regular chemo or what. It's on my list to ask her...

We're doing the "one day at a time" thing in a big, big way around here. :rrose:

Hugs,
Jo

[Tommi]

Jo,
Hang in there.
http://www.fausttemple.org/animaterd_man_hang_gliding.gif
It gets rough around the edges, especially as they lose their independence. Wheelchair at Orlando sounds ideal. Maybe later on, as a treat for Rooster to push her, Wheeee, and save her strength for more exciting times ???

My Mom was soooo stubborn, that I had to cajole her into things. So was I , 7 years ago, as I can best recall. It was my way , or no way---but I was like that before Uterine cancer ;).

and I guess your Mom was too. well, as you said, we do it one day at a time, and I am up to enjoy the sunrise, hot coffee and the jacuzzi...

Love to ya'alllll

[deb_U_taunt]

Someone I know or a friend of someone I know sent someone from their church to pray over me. This was completely without my consent. They gave them my address!!!!! Now I will have to fight to get rid of missionaries. Has to be someone from work. GRRRRRR They won't tell you who sent them either. So not right. I was polite to her, but damn unhappy with the person who violated my privacy.

[DapperButch]

Someone I know or a friend of someone I know sent someone from their church to pray over me. This was completely without my consent. They gave them my address!!!!! Now I will have to fight to get rid of missionaries. Has to be someone from work. GRRRRRR They won't tell you who sent them either. So not right. I was polite to her, but damn unhappy with the person who violated my privacy.

Wow. That is quite terrible. I have never heard of this happening before.

I mean, who would be willing to do this most likely knowing the person they are coming to visit did not give their consent? How did you handle it?

[deb_U_taunt]

I was nice enough to her, it wasn't her fault some unthinking person sent her over. I did make it clear I didn't want anyone else coming over. She offered help and I reminded her I wasn't a member of her church and unless something changed, they don't allow queers in their congregation. She make a quick retreat after that. lol.

Wow. That is quite terrible. I have never heard of this happening before.

I mean, who would be willing to do this most likely knowing the person they are coming to visit did not give their consent? How did you handle it?

[JustJo]

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper :rrose: )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

[Leigh]

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper :rrose: )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

(((((((((((((Jo))))))))))))

I lost a cousin to colon cancer and its an ugly disease (well, cancer is period) but we all know that. I will keep you, Rooster and your mom in My thoughts and prayers while she continues to fight :candle:

[deb_U_taunt]

My heart goes out to you and your family. Hope you have a wonderful visit and are able to create some wonderful memories and don't forget to take a lot of pictures.

HUGS and love to you and your's,

Debby

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper :rrose: )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

[DapperButch]

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper :rrose: )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

A bit over a week ago I went to see this guy in Chicago, Keith Block, M.D. He runs the Block Center for Integrative Cancer. His theory is how it is more than just chemo that helps fight this fight. It is the whole mind, body, spirit thing. Nutrition is huge. He wrote the book, "Life Over Cancer". http://www.blockmd.com/

I take the supplements they reccommend and eat the foods they reccommend. They achieve amazing results. One thing they do really well is help people be healthy enough to get through their chemo treatments. If your mother is able to focus on reading, she should check it out.

Anyway, natural stuff and supplements are part of his thinking and I know your mother is into that. I looked it up and for nausea he suggests "eating a small amount of grated or finely chopped fresh ginger (if your blood platelets are less than 60,000 cells per microliter, check with a medical professional first), or a teaspoon of gomasio (a seasoning made from crushed sesame seeds and salt), or try sucking on the pit of a umeboshi plum. Gomasio and umeboshi plums are available in the macrobiotic section of health food stores. Herbal teas (such as ginger, alfalfa, chamomile, fennel, and slippery elm), oranges, or tangerines may also help".

I know that you can also get ginger candies to suck on, as well. They had them at my chemo center. She could get some of those (sorry, don't remember the name of them, but I know you could order them off the internet) and suck on them during the infusions.

For me, it was all about the simple, red and white striped peppermint. That is what helped my nausea. Peppermint tea helped me too.

Hang tough. (f)

[Tommi]

J.... hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

and more good memories for you too.

Wishing you the best on this journey Jo, while she is here and after...:praying:

[deb_U_taunt]

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today. :thumbsup:

[JustJo]

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today. :thumbsup:

Congratulations on being almost done....and hope it goes smoothly for you today. :rrose:

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

[Tommi]

Congratulations on being almost done....and hope it goes smoothly for you today. :rrose:

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

Yes Jo, it is very common in chemotherapy patients. The port-a-cath is normal. Especially since your Mom has lost so much weight and not eating well. It's easier for routine treatment, and if there should be an emergency, they have direct access should the veins collapse.

Per Wikipedia
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

[DapperButch]

Congratulations on being almost done....and hope it goes smoothly for you today. :rrose:

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

Should I feel insulted? Did you miss the "I had the exact same cancer/treatment as your mother" information somewhere? :blink:

Yes, that is normal.

The infusion is for around 4 hours and then you wear the pack for 48. When the pack becomes empty (there is a battery that starts beeping), you go back to the infusion place and they disconnect you (some insurances pay for a nurse to come to your house). As a side note, you don't have to run over to the facility the moment the beeper goes off. Just remove the battery and get over there when you can.

For me (and evidently a number of people), the exhaustion would set in immediately AFTER the pump stopped. Subsequently, since I worked full-time, I would have my infusion Wednesday morning, then have the pack from Wed-Fri. I would get it off on Friday (I would run over to the infusion place...across the street from my job... at lunch time), and then sleep all weekend. It worked out great. You should ask your mom her "tired time", so your vacation "events" can be scheduled around it.

[JustJo]

Thank you all...and sorry Dapper...my brain has gone dead :|
After hearing from Entycing and Tommi I had one of those duh moments and smacked myself in the forehead...

She's being readmitted to the hospital...her friends have been calling me...I've been trying to reach my sister then realized she's at Burning Man (and therefore out of cell phone range) until the 5th or 6th...basically losing my mind.

I'm waiting to hear what her status is this evening...and trying to figure out if I need to get on a plane right now or what.

More than anything I wish I simply didn't have to deal with this...which then jumps up and smacks me as an incredibly selfish thing since she is dealing with much worse. Her friends are putting 2 and 2 together and realizing that she's told each of us one tiny bit of information here and there, claiming she doesn't know more, and keeping us in the dark about some things that she's told others. Right now, we're comparing notes...and the full story isn't looking good.

The oncologist's office weighed her in at 96 lbs this afternoon and doesn't know why she is having pain in her abdomen 2 months after her surgery. They did an x-ray that showed nothing...more tests to come.

[DapperButch]

The oncologist's office weighed her in at 96 lbs this afternoon and doesn't know why she is having pain in her abdomen 2 months after her surgery. They did an x-ray that showed nothing...more tests to come.

Ok, so now I feel like an asshole for yelling at you. Sorry. :rrose:

Let me tell you the first thing that came into my head when I read your post.

2 weeks after my surgery I was readmitted to the hospital because I had a blockage (read: could not poop) due to adhesions. This excruciating pain just came from out of no where and I had just gone to the bathroom only a couple of hours earlier, so it really made no sense.

It is more common for the adhesions to develop a year after surgery; thus, the reason the fuckers in the ER didn't seem too concerned about the amount of pain I was in until they did a CAT scan.

Find out if your mother has gone to the bathroom.

[JustJo]

Ok, so now I feel like an asshole for yelling at you. Sorry. :rrose:

Let me tell you the first thing that came into my head when I read your post.

2 weeks after my surgery I was readmitted to the hospital because I had a blockage (read: could not poop) due to adhesions. This excruciating pain just came from out of no where and I had just gone to the bathroom only a couple of hours earlier, so it really made no sense.

It is more common for the adhesions to develop a year after surgery; thus, the reason the fuckers in the ER didn't seem too concerned about the amount of pain I was in until they did a CAT scan.

Find out if your mother has gone to the bathroom.

I think we were typing at the same moments and you, my friend, are anything but an asshole. :rrose:

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

[DapperButch]

I think we were typing at the same moments and you, my friend, are anything but an asshole. :rrose:

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

Maybe in the end this hospitalization will be a good thing. Maybe it will get her strength back up resulting in her chemo treatments taking less of a toll on her. Something like 1/3 of all chemo patients have to quit due to weight loss and other side effects.

Please let us know how things are going.

[JustJo]

Maybe in the end this hospitalization will be a good thing. Maybe it will get her strength back up resulting in her chemo treatments taking less of a toll on her. Something like 1/3 of all chemo patients have to quit due to weight loss and other side effects.

Please let us know how things are going.

Nothing definitive....but I'm feeling somewhat relieved.

She's in the hospital, definitely there for at least a few days...getting IV fluids and back on the TPN so she's getting some nutrition. She sounds better..thanks to several IVs of fluid and some painkillers...but she also sounds far more relaxed to be back in the hospital.

They'll be doing some tests to determine what's causing the pain, but in the meantime they're most concerned about the dehydration and malnutrition. It looks like the TPN may become a longer term thing that will go home with her, and the oncologist said that he'll be ordering at-home care once she is released as well.

I haven't managed to talk to him yet and all the info is coming second hand through my mother and her friends....but it's an improvement to know that she's in good hands. :rrose:

[deb_U_taunt]

It is normal. The reason I didn't get a port because of I won't be doing hormone treatments after chemo and they did't need as many blood draws. I can tell you I wish I got a port early on. (The nurse didn't get it first try today, but only ONE left!!!!!!!!!!)

Congratulations on being almost done....and hope it goes smoothly for you today. :rrose:

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

[deb_U_taunt]

Glad to hear she is being admitted, so they can keep a watch on her. They can rehydrate her fairly quick.

I think we were typing at the same moments and you, my friend, are anything but an asshole. :rrose:

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

[JustJo]

It is normal. The reason I didn't get a port because of I won't be doing hormone treatments after chemo and they did't need as many blood draws. I can tell you I wish I got a port early on. (The nurse didn't get it first try today, but only ONE left!!!!!!!!!!)

Ouch....I can only imagine how rough that is....the port does seem easier and makes a lot of sense. I'm so glad you have only one left!

Glad to hear she is being admitted, so they can keep a watch on her. They can rehydrate her fairly quick.

Me too....her BP is back up to 113 over something....it was down to 90...and she sounds better. Her weight of 96 was fully dressed....can't even imagine that for a woman who has been slim her whole life at 145ish.

They've already gotten 2 quarts or liters (whichever it is they use) of fluid into her, and the TPN to be started shortly. I'm sure that will help a lot.

[DapperButch]

It is normal. The reason I didn't get a port because of I won't be doing hormone treatments after chemo and they did't need as many blood draws. I can tell you I wish I got a port early on. (The nurse didn't get it first try today, but only ONE left!!!!!!!!!!)

Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

My every other week blood draws were taken from my arm (not port). There shouldn't be any hormone treatments afterwards (for the standard colon cancer chemo tx).

Ouch....I can only imagine how rough that is....the port does seem easier and makes a lot of sense. I'm so glad you have only one left!

I would much prefer to not have had the port. Even if there was no 48 hour infusion period...having that thing in my chest...being reminded every minute that I have cancer. No, would have much preferred no port. Plus, the surgery to put it in and the surgery to take it out. Plus, the two scars (one from each surgery). No, definitely would have preferred no port.

Me too....her BP is back up to 113 over something....it was down to 90...and she sounds better. Her weight of 96 was fully dressed....can't even imagine that for a woman who has been slim her whole life at 145ish.

They've already gotten 2 quarts or liters (whichever it is they use) of fluid into her, and the TPN to be started shortly. I'm sure that will help a lot.

I am glad you got some info. on your mom. I hope she starts getting better quickly.

[JustJo]

Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

My every other week blood draws were taken from my arm (not port). There shouldn't be any hormone treatments afterwards (for the standard colon cancer chemo tx).



I am glad you got some info. on your mom. I hope she starts getting better quickly.

They do blood draws from her arm too...and I guess she's having problems with her veins due to the dehydration.

Preliminary info says that she'll be in the hospital at least until early in the week, then going home with the TPN and IV fluids....I'm guessing done through the port (?)....but long term. And they'll set up nursing services for her at home when she does go home, too.

The thing that may come into play is the tests being done to determine why she still has pain in her abdomen....and whatever those show.

When we spoke last night, she was glad to be back in the hospital...and I'm relieved that she's there too so they can get a handle on this weight loss and dehydration.

[Dominique]

They do blood draws from her arm too...and I guess she's having problems with her veins due to the dehydration. Your guess would be correct. A big indicator of dehydration, is when a blood draw is attempted, and the vein, rolls. Sometimes they have to pull out and start over. Also, each
stick, causes a little bit of scar tissue to form. Sticking, hitting the scar tissue, causes the needle to clog. The process has to start all over again. Hopefully this will explain *why the port* a little better for you too.

When we spoke last night, she was glad to be back in the hospital...and I'm relieved that she's there too so they can get a handle on this weight loss and dehydration.

You've mentioned she is stoic. I'm sure she has issue with asking for help. Feels like somehow, she is burdening people who want to help....who really do care for her. (common) you almost have to force Home Nurse Care. This will help her tremendously and ease some of your worries. Someone trained, will be making the assessment of her health. And conveying that to you. Not a friend with good intentions, wanting to abide by mom's wishes to not burden Jo with this (refer back to won't ask for help)(f) Hang in there, this fork in the road~ try to think of it in terms of an
intervention~

When you don't feel well, and you live alone, the last thing you want to do is eat. Sometimes fatigue is greater than hunger, and walking to the kitchen to get a box of cereal, to eat dry, just isn't worth it. Dehydration can occur from the obvious manners...sweating (fever), diabetes, Diarrhea...and even what a patient under going chemo thinks is *just from the chemo*, lots of fluid gets lost. Vomiting (?) Nausea can come from dehydration and or the chemo. The inability to eat or drink will bring about weakness. Eating, well, foods contain water. It's all pretty cicular, as much as it makes sense Jo, it doesn't make sense. Because it's cancer. And as I've seen it written many times. It sucks.

Dehydration goes hand in hand with the electrolytes and she is in the right place to get everything balanced out. Here, since Mrs. Jo is stoic, and won't admit pain...they will know, pain makes the heart race faster. Usually, when the pulse goes up, the blood pressure goes down. And the opposite, if the BP goes up, the pulse comes down. Mrs. Jo
and her *Oh, I'm ok* has made it a little harder for them to treat her. This way,she will be monitored, and with the help of the fantastic advancements in science and medicine. They'll be able to help her much better. Sux that it took all of this, to get to this point. Patients have rights. Hello Hippa.

Enough from me. Thinking about you Jo.

[JustJo]

You're so right Yellow Band...thank you. Having the iliostomy (and no more colon) makes the dehydration issues so much harder, too.

She hates asking for help, and the only place she seems to be willing to take it is (literally) in the hospital. I think having the doctor order at-home nurse care will help too....the whole "doctor's orders" thing is easier for her to swallow.

[deb_U_taunt]

[COLOR="Blue"]Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

Sorry I was referred to why I didn't get a port, with chemo brain I don't always make a clear point.

[Tommi]

Sorry I was referred to why I didn't get a port, with chemo brain I don't always make a clear point.

Debby,
I was behind a car with this bumper sticker this morning. :)

http://rlv.zcache.com/chemo_brain_bumper_sticker-p128733411514597262trl0_400.jpg

[deb_U_taunt]

Debby,
I was behind a car with this bumper sticker this morning. :)

http://rlv.zcache.com/chemo_brain_bumper_sticker-p128733411514597262trl0_400.jpg

Wow, I so need that bumper sticker. lol I have been so unfocused and am usually the queen of multitasking. Now, I am lucky if I can remember what I went into the other room for.

[IttyBittyFem]

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today. :thumbsup:

Congrats on ONLY ONE MORE treatment. You must be sooooo excited.

Please send me that Nurse when you're all finished that found the vein on the first try. I could use someone like that, what a pleasure that would be! <wink>

[IttyBittyFem]

Is it possible to actually get blood from the Port? Sure would make life ALOT easier.

[JustJo]

So I finally got permissions organized and got to speak to the Oncologist's nurse...the news is not good, but it feels good to at least have the real information.

Her cancer is stage 4, having spread to lymph nodes and also the membranous tissue (can't remember the name) that covers the intestines. They removed a lot of lymph nodes when they took out the tumor, but the current chemo is to ensure that the rest of the lymph system is cancer free.

After that, if her strength allows, the next step is another major procedure to "belly wash" the membrane. Evidently the details of this and her condition (after 50 years of Crohn's disease) mean that she would have to go to a specialist in NYC.

If she is not strong enough for the next procedure, then chemo becomes a semi-permanent thing to keep the cancer in the membrane under control.

Their biggest concern right now is to keep her hydration and nutrition levels up so that she can complete the first round of chemo (through the end of the year), and get her strong enough to do the next step. If she isn't strong enough, then it can't be done...and then it's just a matter of time.

The nurse said that the oncologist describes her case as "extremely complicated" due to the long term Crohn's and the condition of (what remains of) her small intestine.

She will be going home (once strong enough) with an IV of fluids and TPN to wear at night. This should help keep her baseline nutrition up enough to keep her stable, and give her a chance to gain some if she can eat solid food and keep it down.

It feels pretty awful, and not terribly hopeful...but at least I feel like I have the truth now...and that helps. :rrose: Today is her birthday....she is 71.