Cancer Support and Caregivers Who Are Trail Blazers!

[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]

Originally Posted by 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...

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]

Originally Posted by 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...

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.

Sue

[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]

Originally Posted by 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.

((((((((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]

Originally Posted by Tommi

((((((((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.

[Tommi]

Originally Posted by 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.

Sue

Yes..That is agood sign suebee..

[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]

Originally Posted by 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.

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

[SuperFemme]

Originally Posted by 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.

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.

[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. .
Love to you all,
Tommi

[Spirit Dancer]

Originally Posted by 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. .
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