Cancer Support and Caregivers Who Are Trail Blazers!

[DapperButch]

Originally Posted by LeftWriteFemme

I'm leaving in a few minutes to go pick up my sponsee, today is her surgery. I didn't think I was nervous, but I couldn't get to sleep last night and 4:30 am came much earlier than you might expect, it was earlier than I expected for sure. Everything will be fine, but I do appreciate all the support here, your prayers and well wishes mean so much. Oh, on the very happy news side of the world, my sponsee's brother breathed on his own for 8 hours yesterday and is surprising all of us with his consistent improvement. Thank you again, Sherrie

LWF, I think it is fantastic the way you are staying by your sponsee's side. I know your role in her life is to be available to her for emotional support, but to me (in my limited knowledge of the Sponsor/sponsee relationship based on people I know), this goes beyond the call of duty! People are lucky if their family will be as supportive/involved as you are.

l bet she is grateful to you. I can tell you as one who has had cancer, this is our most vulnerable time and a time we are really clued in as to how much we need others. With this need comes feelings of gratefulness (or it should!)

I am so glad she has you!

[Tommi]

Sharing about Difficult Days and Nights. For today.
One of the joys of survival is when someone special is there, and can just listen. Knowing you are there, and have always been there will be good medicine and a great example of the tools .

Keep us posted.

[LeftWriteFemme]

I am blown away by this whole process. Yesterday, whirled by at a breakneck pace and today is just a blur. My sponsee's 5 and a half hour surgery was a success and she was taped up and sent home at 9:30 pm. The anesthetic was Propofol, which has a very short half life and her incisions were seeded with lidocaine and she was wrapped up tight. She has so little discomfort all she has taken is Tylenol. She has two drains. The oncology surgeon showed me the films and told me the margins look really good. They took two sentinel nodes, but didn't check them in the surgical suite as she had first told me they would. Instead they will take a look and present their findings at the tumor board, which I think meets on Wednesday. So at this point she is delighted to be home and delighted to have had her breast reduction. Having the cancer taken out has been reduced to a footnote. My guess is it will be back in the headlines when the radiation treatments begin in a few weeks. Thank you for your love and support I couldn't have managed this without it. Please keep those thoughts and prayers coming they are doing us a world of good!

[LeftWriteFemme]

It's hard to believe, but my sponsee returned to work today! Both the oncology surgeon and the plastic surgeon think she is doing great. The medical oncologist has sent her tests out to preform some equation that will take three weeks to get the results and from that they will determine if she will need chemo, but no one thinks she will. She will however have radiation and she hasn't visited with the radiologist yet, but she will soon. We are all confident that the radiation will be simpler due to the fact that 9 pounds of breast tissue was removed from each breast so that is 18 pounds less tissue to radiate. Plus, it gives a new meaning to clean margins......all the doctors are impressed with how well her skin is healing, we mainly contribute that to the recommendation of Dr. Henning to eat lots and lots of cucumbers, it seems to have made an impressive improvement in healing which we are all grateful for.
Again, thank you for all your support and encouragement. This has been a team effort and I think that is a major part of why it has all gone so well. Please keep us in your thoughts and prayers we are still working our way though this process and need all the strength we get from all of you!

[Tommi]

Awesome. So glad for the Great news.

Having a Team, helps with the scary times, questions, and aloneness that comes with that diagnosis, which, used to always be so deadly.

Good friends, good care, good doctors, good medicine, and a Higher Power pulling for you keeps the bad juju away.

Tell her she gets to wear a special T-shirt if she does the American Cancer Society RELAY FOR LIFE.

http://www.relayforlife.org/

[LeftWriteFemme]

Originally Posted by Tommi

Awesome. So glad for the Great news.

Having a Team, helps with the scary times, questions, and aloneness that comes with that diagnosis, which, used to always be so deadly.

Good friends, good care, good doctors, good medicine, and a Higher Power pulling for you keeps the bad juju away.

Tell her she gets to wear a special T-shirt if she does the American Cancer Society RELAY FOR LIFE.

http://www.relayforlife.org/

I will let her know about this! She and her sponsee are signed up for a 37 mile walk in NYC: http://www.avonwalk.org/new-york/ I think they are going to get hooked on doing these walks!

Thank you for the encouragement and guidance it has made all the difference as she has had to face the sea of unknown medical choices! You expertise is a godsend! Thank you again.

[LeftWriteFemme]

Okay, so today my sponsee went to the medical oncologist's office and her number is 17 and this means she will have to have both chemo and radiation. 4 rounds of infusion chemo and 28 treatments of radiation. She will begin the chemo in a couple of weeks. I am shocked.......none of us thought she would need chemo. I haven't stopped crying since I found out and I am going to have to get a grip because I will not show her how upset I am, she needs my strength not my distress. I simply don't want her to have to go through this and I have no control....none of us do. She is being a trooper, I offered to come get her or go stay with her or have myself and others come take her to a meeting, but she says she's okay (her sponsee is away this weekend)

Any advice you can offer about surviving the chemo....or the radiation for that matter is appreciated.

Earlier this week the cosmetic surgeon had to cut away her dead skin....it freaked her out, when I asked her why she said because he did it right there in his suit......guess she thought he would gown up??? This has been such a learning experience.

The medical oncologist says when this is all done her chance of occurrence will be 10% so I'm going to hold on to that......until I can find something better!

Thank you again for all the support and encouragement, it really helps!

[TruTexan]

Originally Posted by LeftWriteFemme

Okay, so today my sponsee went to the medical oncologist's office and her number is 17 and this means she will have to have both chemo and radiation. 4 rounds of infusion chemo and 28 treatments of radiation. She will begin the chemo in a couple of weeks. I am shocked.......none of us thought she would need chemo. I haven't stopped crying since I found out and I am going to have to get a grip because I will not show her how upset I am, she needs my strength not my distress. I simply don't want her to have to go through this and I have no control....none of us do. She is being a trooper, I offered to come get her or go stay with her or have myself and others come take her to a meeting, but she says she's okay (her sponsee is away this weekend)

Any advice you can offer about surviving the chemo....or the radiation for that matter is appreciated.

Earlier this week the cosmetic surgeon had to cut away her dead skin....it freaked her out, when I asked her why she said because he did it right there in his suit......guess she thought he would gown up??? This has been such a learning experience.

The medical oncologist says when this is all done her chance of occurrence will be 10% so I'm going to hold on to that......until I can find something better!

Thank you again for all the support and encouragement, it really helps!

Many prayers said for your sponsee. I know she is in need of your support and you need support of us here at BFP. I haven't done much online posting , just reading and forgot about reading this thread as well. I"m here and I support you.
A wife of my cousin is finishing her chemo this week, she had ovarian and uterine cancer which spread to her lyphnodes. She starts radiation therapy next week and should be finished with it by the 1st of next month. It's been a long road for her as well as those of you that have gone through having cancer and getting treatments. Chemo and radiation take a toll on the patients involved and they all need support as much as they can get to keep strength to fight the fight. I commend you LWF for being so diligent in your support to your sponsee. Keep up the good work. I will keep you in prayer as well as your sponsee and all members here that are dealing with the this.

God Bless you all.

[LeftWriteFemme]

[DapperButch]

So, i had a little freak out yesterday. I was calling my doc's office to find out when I should schedule a CAT scan. It had been a long time and couldn't remember what the plan was as the time frame changes on various tests the further out I move away from when I had my surgery/chemo treatment.

I found out that I actually missed a CAT scan appointment 4 months ago. I am pretty pissed because I am confident that they did not call me to tell me that this was scheduled. I recall the conversation with the assistant I had at my last oncology appt. She was to set it up when it was time for me to get one and let me know. She of course thinks she DID tell me. I don't recall that phone call, or receiving those prescriptions.

It doesn't matter at this point.

I was pretty freaked out that it has been 1 year and 3.5 months since my last CAT scan and it was to be done at one year. In my head, I mixed it up with how soon I was supposed to have a colonoscopy which is every 1.5 years (I think? Shit, maybe that one is sooner, too).

With both CAT scans and colonoscopies you want to be careful with how often you do them for health reasons.

It hasn't helped that for the last couple of months I have been having that same tired feeling I had before I was diagnosed. It is hard to explain, but it is this certain type of exhaustion I get. This is what got me thinking about calling to begin with. I actually thought it was supposed to be at 1.5 years and I was ahead of the game.

I will get my blood work done today and we will see how that goes. For most cancers though (the ones that I would typically get next), wouldn't show up in the blood until it was pretty bad, so that it not really a helpful gauge.

The CAT scan is Monday. I am glad they figured out a way to get me in so quickly.

I hope everyone else is doing well here.

I have a question for those who have suffered from cancer (for some reason I don't like the word survivor). How often do you think about it? How often do you worry it will come back? What is the intensity of the worry when you do think about it?

Thanks.

[clay]

Hey Dapper:
Glad you were able to get in and have this scheduled soon!
I understand where you are coming from on wanting to get the FU's done according to "schedule".....as per one's respective providers and timelines.
Once having cancer, surgery and/or chemo, we are predisposed to "living" on a timeline, so to speak.
My previous oncologist said I would need to be seen every 3 months, with the tumor marker levels done then, for life. So, in my subconscious, that is the "timeline" I lived on.
My current oncologist is from a different school of thought, following a national organization's gudielines. With my levels being stable at around 1 to 1.33, no new symptoms, etc. I can now go to once every 1 to 2 years before having CT scans. I don't have to get colonoscopies for a couple or 3 years unless something new comes up.
I had to re wrap my brain around this new set of guidelines, but am doing good with that. I was "hesitant" at first though.
Last Sept. I was given quite a scare. Had to get new colonoscopy, 5 months after previous one. BUT sometimes, the films do pick up "artifacts" or such....soooo.
Then in Nov. I had something "suspicious" show up on previously normal mammos. Again, I was terrified, put through wringer with more compressed scans and tests. Luckily, it was all benign....soooo...I get my mammos yearly without fail!
I had my regular eye exam a few months back, and again, I was given a scare. Further workup and MORE tests showed I didn't have acute narrow angle glaucoma as previously thought!
Now, my cancer wasn't as advanced , and I dodged having to have chemo/rads, but every check up does leave me with slight trepidation.





How often do you think about it?

Initially I was with some concern each time I had a follow up. I wondered if my cancer would return, what if my tumor marker levels were up, etc.
In time, I was able to relax and think on the positive side of the spectrum.

At times, I do think of it, and wonder if there are any new mutated cells running
amok inside of me. It's almost impossible to NOT think like this at times, for myself, anyway.

These answers apply only to me....as a sidenote....


How often do you worry it will come back?

Again, I am able to think more along it won't return, staying as focused and as positive as I can.

I don't want the fear of cancer to rule my life. I could drive myself insane with wondering about the "what ifs" if I let that consume me.



What is the intensity of the worry when you do think about it?

Last September, I was a royal mess when the films showed an "applecore lesion" on my splenic flexure of my colon (left side of colon). I was scared out of my mind for 6 weeks, until I had further workups to rule that out. It involved another colonoscopy and CT Scan with/without contrast, and bloodwork.

I was so down and worried sick. Here I was in a new relationship, just starting to settle into life again, and this ugly scenario cropped up. I couldn't focus on anything BUT cancer.
Thankfully for my loving, positive, and supportive partner, and an amazing network of friends who were supportive and loving, I was able to come out of that post test results!

Next month I am due for tumor marker levels, then pending those results, I am going to yearly FU's. Of course, if I have any changes in bowel/bladder, etc I will go in sooner.

Each of us are unique and each respond differently to our situations. But I know I will always have some trepidations regarding this ugly disease recurring inside of me. But I also refuse to let it consume me. I have my crafts, hobbies, friends, and this wonderful thread as diversionary. I always come to the Planet to see this thread in particular.

I feel at ease here, I like to read about each of us, and to share of myself with each of you. I like to catch a glimpse into each one of your lives, and see how life is going for everyone else.

Will it ever get less stressful? Probably not....because we each live on some sort of a "timed guideline" for further tests, FU's, and that deep down, nagging little thought of "is it back". What does this tiredness mean?

I have been more tired as of late, and I attributed it to the recent total knee replacement surgery I had. My hemoglobin is low, BUT rebounding. My BP is low, staying low, and I catch myself nodding off several times a day, if I sit still long enough. Of course, one's bowel habits and consistency does change...a lot...post cancer of the colon, so when asked if it has changed, I am always like...well, that is hard to say...unless it is bloody or something frankly obvious....how does one gauge that? as to "has it changed" ?

So, I hope I have given you some semblance of what it is like for myself...and I don't think any one of us is "alone" per se, in these same feelings...one way or another...and probably always will have these variances of feelings, fears, and "what ifs".

Dap....good luck my friend. I am with you in thoughts & spirit. Please let us know when you are ready to, your test results.
I look up to you, BTW, in so many ways. YOU were an amazing source of information, support, and encouragement to me when I faced my own colon cancer and surgery!!
I can only hope to be of the same to you....take care, Dap!!! fondly....Clay

[Genesis]

Sending positive energy and prayers to you DapperButch, Clay and everyone else in this group. Gosh, I feel like I have been out of the loop for a while.
As of now, my Mom had left knee and leg surgery. One of the screws was digging into her knee and she was no longer able to walk. She has two months left of limited mobility, and then she can begin physical therapy. It has been a learning experience trying to make sure she is wise and patient and not force herself to walk sooner than she should and making sure my Dad and I do not burn out.
It has been an interesting balancing act, but totally doable. Learning to know when to ask for "me" time... With Mother's day coming next month... my mind is already planning what my Dad and I will be doing for her on Mother's day. I am thankful for every single Doctor, intern, nurse and health personnel that has been involved in my Mom's care... even the bad ones... learned lessons and wisdom and strength gained. My prayers, positive energy, and love to each of you on your journey and your loved ones that walk this journey with each of you....

As for the questions:

How often do you think about it?
Since beginning the journey with my Mom almost 6 years ago... I do not think of mine so much... I make sure I stick to my annual check ups and blood work. Since I am so involved in my Mom's process... I do not think of mine often...

How often do you worry it will come back?
I worry mostly when I go do my blood work or annual check up. Once I get the results... then I deal with it....


What is the intensity of the worry when you do think about it?
It's not as intense as it used to be before. I just figured when it's time for me to go... It's time for me to go... If it comes back am going to give it hell.....

[DapperButch]

Hey, Clay. Thank you for the support and being so open and sharing in the way you did. You rock.

Genesis, yes it makes sense that if we have others to worry about, we worry less about ourselves. Glad to hear you have not forgotten about yourself and follow through on getting the tests you need.

[clay]

Dapper:
You are so very welcome! Thank YOU for your continued friendship and support with your kind words!!!
Take care of yourself, Dapper!!

[clay]

Genesis:
I echo my friend, Dapper's sentiments to you also....take care of yourself, too.
An instructor in nursing once told me something that stuck all these years.....if my own bucket isn't full, how can I possibly fill someone else's....
So take time for YOU.....know I am here as well with you in spirit.....keep us posted on mom's progress.
I am just 4.5 weeks post op with a total knee myself..those are rough, to say the least....
Hugs for you my friend....Clay

[Rockinonahigh]

Originally Posted by clay

Genesis:
I echo my friend, Dapper's sentiments to you also....take care of yourself, too.
An instructor in nursing once told me something that stuck all these years.....if my own bucket isn't full, how can I possibly fill someone else's....
So take time for YOU.....know I am here as well with you in spirit.....keep us posted on mom's progress.
I am just 4.5 weeks post op with a total knee myself..those are rough, to say the least....
Hugs for you my friend....Clay

Total knee replacement,my friend I do feel for you.I have had knee issues for the last two months so finely I see the knee orthopedics to morrow morning to find out how bad it's going to be,i'm thinking it won't be to good considering the pain I am dealing with.I'm taking pain pills but they only help me live with it better.Clay,take care and do what the doctors tells you to do.

[Tommi]

Originally Posted by LeftWriteFemme

Okay, so today my sponsee went to the medical oncologist's office and her number is 17 and this means she will have to have both chemo and radiation. 4 rounds of infusion chemo and 28 treatments of radiation. She will begin the chemo in a couple of weeks. I am shocked.......none of us thought she would need chemo. I haven't stopped crying since I found out and I am going to have to get a grip because I will not show her how upset I am, she needs my strength not my distress. I simply don't want her to have to go through this and I have no control....none of us do. She is being a trooper, I offered to come get her or go stay with her or have myself and others come take her to a meeting, but she says she's okay (her sponsee is away this weekend)

Any advice you can offer about surviving the chemo....or the radiation for that matter is appreciated.

Earlier this week the cosmetic surgeon had to cut away her dead skin....it freaked her out, when I asked her why she said because he did it right there in his suit......guess she thought he would gown up??? This has been such a learning experience.

The medical oncologist says when this is all done her chance of occurrence will be 10% so I'm going to hold on to that......until I can find something better!

Thank you again for all the support and encouragement, it really helps!

We are all so unique in the way sickness affects us, but many common side effects from radiation and chemo. Knowing that reading and understanding some of them will be helpful to you and yours, here are a few basic's to get you started. From here , you can explore many topics, as I know being informed helps the crazy committee to be calmed and quieted.

Rad. Therapy sessions took less than 15 minutes. Waited in a lounge with 4 or 5 others, we were all ready and waiting for our names to be called, dressed in those fashionable clothes. I saw, for the ones with breast cancer, the skin gets extremely sensitive, and the radiation nurses and or Doc gave them creme's and ointments to use. Also, staying really well hydrated helped.

Pelvic Radiation for me, was a walk in the park, I drove myself to the external radiation appointments 5 days a week for 7 weeks every morning at 7 Am, then went to work.., and to the 3 final brachytherapy appointments that followed. Fatigue hit me for several months afterwards, where I wanted to sleep in, and not go to work, which was uncommon for me. I needed more than the usual 4 or 5 hours of sleep too.

Chemo is different for everyone. I didn't have chemo, so am not versed in it for myself. My Mom had lung cancer, and never got sick during it.

My best wishes for warp speed through this period of life. The experience you gather could make a great book for support for those who get the news and those that walk alongside. "just sayin' "

I love the smell of coffee too, and now have a Keurig that I can stand in front of as it brews;

Resource Link for Chemotherapy information
http://www.cancer.gov/cancertopics/c...herapy-and-you

Chemotherapy and You: Support for People With Cancer

Chemotherapy and You is written for you - someone who is about to receive or is now receiving chemotherapy for cancer. Your family, friends, and others close to you may also want to read this book.

This book is a guide you can refer to throughout your chemotherapy treatment. It includes facts about chemotherapy and its side effects and also highlights ways you can care for yourself before, during, and after treatment
There are some great resources on NIH and American Cancer Society pages.
Cancer
About This Book
Questions and Answers About Chemotherapy
Tips for Meeting With Your Doctor or Nurse
Your Feelings During Chemotherapy
Chemotherapy Side Effects
Chemotherapy Side Effects At-A-Glance
Side Effects and Ways To Manage Them
Foods To Help With Side Effects
Ways To Learn More
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[LeftWriteFemme]

Originally Posted by Tommi

We are all so unique in the way sickness affects us, but many common side effects from radiation and chemo. Knowing that reading and understanding some of them will be helpful to you and yours, here are a few basic's to get you started. From here , you can explore many topics, as I know being informed helps the crazy committee to be calmed and quieted.

Rad. Therapy sessions took less than 15 minutes. Waited in a lounge with 4 or 5 others, we were all ready and waiting for our names to be called, dressed in those fashionable clothes. I saw, for the ones with breast cancer, the skin gets extremely sensitive, and the radiation nurses and or Doc gave them creme's and ointments to use. Also, staying really well hydrated helped.

Pelvic Radiation for me, was a walk in the park, I drove myself to the external radiation appointments 5 days a week for 7 weeks every morning at 7 Am, then went to work.., and to the 3 final brachytherapy appointments that followed. Fatigue hit me for several months afterwards, where I wanted to sleep in, and not go to work, which was uncommon for me. I needed more than the usual 4 or 5 hours of sleep too.

Chemo is different for everyone. I didn't have chemo, so am not versed in it for myself. My Mom had lung cancer, and never got sick during it.

My best wishes for warp speed through this period of life. The experience you gather could make a great book for support for those who get the news and those that walk alongside. "just sayin' "

I love the smell of coffee too, and now have a Keurig that I can stand in front of as it brews;

Resource Link for Chemotherapy information
http://www.cancer.gov/cancertopics/c...herapy-and-you

Chemotherapy and You: Support for People With Cancer

Chemotherapy and You is written for you - someone who is about to receive or is now receiving chemotherapy for cancer. Your family, friends, and others close to you may also want to read this book.

This book is a guide you can refer to throughout your chemotherapy treatment. It includes facts about chemotherapy and its side effects and also highlights ways you can care for yourself before, during, and after treatment

Thank you!!! Thank you, yes, it is a great book, she is about halfway through it and is feeling the relief knowledge brings!

The plastic surgeon has said she will be ready in two more weeks......so now we are having the debate of should she have her first treatment on Friday the 2nd or Monday the 5th, because May the 3rd is the Newark Women's Retreat and she is the MC and I am the retreat master. She has read that she will be full of energy the day after the treatment due to the steroids and will crash Sunday, and I will be able to be there and care for her on Sunday. Of course this makes sense in a perfect world where everything goes as planned and we have......ha, ha, ha, 'control' I of course am worried that having to do anything the day after her first chemo is a concern especially something as taxing as MCing a big event.
My sponsor Kris says, chemo is cumulative and the first session shouldn't be that bad.......I don't know, I just worry, though at this point the thing I am more worried about is that this week she locked herself out of the house and instead of calling for help.........CLIMBED THROUGH HER BEDROOM WINDOW!!!!! (I'm a little upset....can you tell??? ) She is bruised beyond belief and I am without words, seriously she is not even completely healed from the surgery and she's climbing though windows........at 52. I've been shaking my head a lot, I am just as powerless over her craziness as I am her cancer. I will say her friends are teasing her like wild......one friend from work texted her while she was and the plastic surgeon's office to remind her that she could use his door, she didn't have to crawl out his office window...she laughed out loud at that, but I think it made the point better than all my fretting and hand wringing.
And you are right, of course you are right, this experience will make a great book........I am hope it will be a comedy, though in that dark place in my heart I still fear it could end up a tragedy. Kris, keeps reminding me that it's 'only' 4 rounds of chemo, only 4, that still sounds like a lot to me when we were expecting only radiation, but I am holding on to the fact that it's only 4.

Your new coffee maker sounds like fun! I've seen all the pretty little K-cup packs and it looks to be an elegant system! Enjoy!!

Again, thank you for all your support. I don't know why cancer is so much scarier to me than other diseases, but it really is.

Here is a link to the Fresh Air podcast where Edie Falco talks about many things including how she dealt with her breast cancer: http://www.npr.org/player/v2/mediaPl...3&d=04-09-2014

[DapperButch]

So, I found out on Friday that my best friend's father has colon cancer. She has been my best friend since 5th grade, so I know he him well. He has been my mechanic for years.

It is bad. BAD. He lost 25+lbs over the last couple of months and has refused to go to the doctor. He finally went because he was so exhausted he could not function. Doc could feel his tumor with a rectal exam.

Anyway, they are moving quickly, even having a surgeon come in on Good Friday when the office was closed to check him out (family doc knows the surgeon).

Chemo/radiation first. Dont' know why that is. My friend only knows so much. I told my friend after he gets all the info. I can sit down with her parents if they want. He is such a proud man (he has had symptoms for 6 months and ignored them), but I figure maybe he would be willing. I would think he might have a question or two about tx I could help him with.

It's got to be bad though, guys, if they could feel it. I don't want to tell my friend this and when she called me a couple of months ago, I told her it was a very treatable cancer. I don't have the heart to tell her that is it treatable when you catch it early....

Anyway, keep my friend's Dad in your thoughts and prayers please. He gets the results of his CAT scan tomorrow (they are searching for more tumors).

Thanks.

[DapperButch]

I just went for my CAT scan. I was talking to the receptionist while I was waiting. After I told her I had had colon cancer she told me her sister in-law had Stage 4 colon cancer 3 years ago. She said they took "everything out they could" (organd), and did chemo, etc. Anyway, it came back 6 months later. The docs told her there was nothing they could do at our local hospital (which actually has a pretty extensive Cancer Center). The woman went to that Cancer Treatment Center of America and they did more surgery/chemo. She is now 1.5 years clean of cancer.

It is nice to hear those stories.