Pam in hospital

pete43lost_at_sea

tabur said:

Thank you...
...for the vibes.

Pam was discharged Friday afternoon and what normally would be a 3 1/2 hour drive home turned into 5 hours. Not sure I could handle living in DC. I was exhausted and can only imagine how she felt.

The CT revealed a slight growth of the tumor but also a swollen liver. The distention of the right side of her abdomen is still very obvious. On the up side, the Dr. said there is no evidence of internal bleeding or jaundice and her liver panel shows mostly normal liver functions. The concern continues to be the Alk Phos level which has gone up a bit to 760. They are still concerned about bile duct obstruction. The other issue was her very low blood pressure. They gave her 2 units of blood to try to “juice her up.” Explains her fatigue.

Her onc explained two clinical trials that she was a candidate for. One involved a new regiment of existing chemo drugs administered by IV. She immediately said no to that one. All nurses and techs have a real tough time getting at a vein and she cries from pain every time she gets an IV. She had a port a year and a half ago but it had to be removed due to complications. The second trial consisted of Xeloda and an experimental drug called ABT-888, some kind of enzyme inhibitor. These would both be taken orally. He’s had a 25% positive response so far (minor shrinkage of tumor or no growth) and said it’s been very well tolerated. I really thought she would give this a try but she is now refusing any more chemo. She had Xeloda before and tolerated it very well so I don’t understand.

Last Monday, I took her to a TCM (Traditional Chinese Medicine) Practitioner. He made it clear that he cannot cure her cancer but felt confident he could make her feel better and increase the quality of her life. I’m not sure how I feel about TCM but the important thing is, she is sold on the idea; unfortunately, at the exclusion of other options. I explained we could do both but she refuses more chemo. I am not in her shoes and am trying to respect this decision but I feel it is wrong. It’s a matter of quality and quantity. Assuming TCM can increase the quality of her life, and I certainly hope it does, it seems to me that chemo is the best option for increasing the quantity of her life.

For the first 30 years of our marriage, she has taken care of me, our home and our children. Now, for the past two years our roles have reversed and I am happy to take care of her and our home (our children are grown). I love her more now than I ever have. I have been with her through every treatment, test, poke and probe. She has been so brave but I know she is exhausted. I also know her well enough to know what buttons I could push to make her participate in the trial, but do I have that right? The trial is almost full and the Dr. needs an answer by Monday. I don’t know what to do. This is the lowest point of my life, either way I go seems wrong. I guess if the TCM works we can always look for another trial but I think it would be difficult to find one that doesn’t involve needles. I also wonder if we can afford the time.

Sorry this post is so long. I’m not even looking for answers (although your opinions are always welcome). I just needed to unload some weight and you guys are the strongest people I know.

Al

al you are a great husband, pam needs hope
what buttons to press ? now this is the hardest question i could imagine you would have in your life. i was moved by your post, i am almost crying.
give pam a hug and let her know you love her.
even writing your post i think will help you find the best answer.
don't be rushed by onc, even though time is precious.
maybe prayer and some contemplation will help you find out how to best answer pam's needs.
don't forget to give her an extra warm xmas hug.
my TCM onc says it works slowly, i hope TCM it helps. I hope it gives hope.
maybe if pam has a little break , she will find the spirit to fight. TCM is still showing she's a fighter, the IV pain sounds horrendous. poor dear. i have read about pain conditioning and meditating to avoid pain. that iv pain issue maybe the road block to getting her back onto chemo and the trials.

let your onc know the score and my sincerest best xmas wishes to you and pam
hugs
pete
ps don't forget to look after yourself, make sure your best friend understands what kind of a hellish position you are in.

pepebcn

lisa42 said:

posted before I saw the update
Hi again Al,

I didn't read your update on Pam until after I already replied to your orignial post.
Well, even though Pam doesn't want any more chemo, perhaps TCM will do the job. Please keep us updated-

Prayers for you and Pam-
Lisa

Hi Al , talk to her , let her know how important she is for the
family , for you and for us as well, tell her tha probably TCM will help her to deal with Chemo, or tell her to just try and see how manageable
chemo is!.
Hugs and prayers!

tabur

Thank you
Thank you all for your concern.

Our daughter came up yesterday to help around the house. She has been wonderful through all this. The 3 of us had a long talk with each of us expressing our opinions and feelings. We destroyed a box of tissues. Of course, Pam's opinion mattered most. She is sick of feeling sick. She is sick of chemo. And she gets sick every time we are in the car for more than an hour. Georgetown is a 3 1/2 hour drive and she gets nauseous just at the thought. She takes Dramamine but even that doesn't last. In the end, she decided that she will not do this trial. She wants to try TCM and her first session is tomorrow morning.

Now for the amazing part. She is feeling wonderful this morning! Best I have seen her in a long, long time. She has some energy, is talkative and has no pain. I guess I have to attribute this to the mental release of stress she has been feeling. She is really looking forward to tomorrow’s TCM treatment. She even brought up next years camping season and folks, I can’t even get her to go camping before the month of May!

Now for my diabolical plan. I am going to re-establish contact with her local onc and keep an eye on Hershey Medical Center for options. Shhhh. Don’t let her know. My hope is TCM can make her feel good enough to consider more options.

Now I’m going to unplug for awhile. I think we are going to have a good day Thank you all so very much for your replies and concern. This community has been a great help to me.

Al

AnneCan

tabur said:

Thank you
Thank you all for your concern.

Our daughter came up yesterday to help around the house. She has been wonderful through all this. The 3 of us had a long talk with each of us expressing our opinions and feelings. We destroyed a box of tissues. Of course, Pam's opinion mattered most. She is sick of feeling sick. She is sick of chemo. And she gets sick every time we are in the car for more than an hour. Georgetown is a 3 1/2 hour drive and she gets nauseous just at the thought. She takes Dramamine but even that doesn't last. In the end, she decided that she will not do this trial. She wants to try TCM and her first session is tomorrow morning.

Now for the amazing part. She is feeling wonderful this morning! Best I have seen her in a long, long time. She has some energy, is talkative and has no pain. I guess I have to attribute this to the mental release of stress she has been feeling. She is really looking forward to tomorrow’s TCM treatment. She even brought up next years camping season and folks, I can’t even get her to go camping before the month of May!

Now for my diabolical plan. I am going to re-establish contact with her local onc and keep an eye on Hershey Medical Center for options. Shhhh. Don’t let her know. My hope is TCM can make her feel good enough to consider more options.

Now I’m going to unplug for awhile. I think we are going to have a good day Thank you all so very much for your replies and concern. This community has been a great help to me.

Al

Al
I am so sorry for all you and Pam have been through. I don't think your plan is diabolical; I think it is clever + covers more bases. I am so glad to hear Pam is feeling so good today, I hope that continues. I have very bad veins + I have a port, which has been a godsend for me. If Pam doesn't want another port, is a PICC line an option? Best wishes to you both.

pepebcn

tabur said:

Thank you
Thank you all for your concern.

Our daughter came up yesterday to help around the house. She has been wonderful through all this. The 3 of us had a long talk with each of us expressing our opinions and feelings. We destroyed a box of tissues. Of course, Pam's opinion mattered most. She is sick of feeling sick. She is sick of chemo. And she gets sick every time we are in the car for more than an hour. Georgetown is a 3 1/2 hour drive and she gets nauseous just at the thought. She takes Dramamine but even that doesn't last. In the end, she decided that she will not do this trial. She wants to try TCM and her first session is tomorrow morning.

Now for the amazing part. She is feeling wonderful this morning! Best I have seen her in a long, long time. She has some energy, is talkative and has no pain. I guess I have to attribute this to the mental release of stress she has been feeling. She is really looking forward to tomorrow’s TCM treatment. She even brought up next years camping season and folks, I can’t even get her to go camping before the month of May!

Now for my diabolical plan. I am going to re-establish contact with her local onc and keep an eye on Hershey Medical Center for options. Shhhh. Don’t let her know. My hope is TCM can make her feel good enough to consider more options.

Now I’m going to unplug for awhile. I think we are going to have a good day Thank you all so very much for your replies and concern. This community has been a great help to me.

Al

Great idea Al just let her rest for a while
I'm sure it will work!