Thursday, September 25, 2014

Doin' chemo again

After an intense and volatile 3-month break from chemo—during which my body healed nicely from chemo but "broke" in other ways—I am back on chemotherapy. It was not an easy decision for me to make: going from no chemo side effects back into the chemo "murk"; especially since I have become weaker and lost a few more pounds. I told Barb if the chemo crap is too much for me I can always stop.

At my oncology appointment this Wed. Dr Yee reminded me that although it is still locally contained (Stage 3) on the pancreas the last CTscan did show that it had grown slightly. Being of a "one-chemo mind" he, of course, recommended I start again with the same chemical recipe I had before: Abraxane by infusion Day 1 and Day 8 (rest on Day 15) with Xeloda oral tablets in tandem daily for two weeks (Days 1-14) and one week off (Days 15-21).

I'm doing this, of course, because I rather the tumor didn't "grow" any more or metastasize. The flip side is: how much will it take out of me. What will my quality of life be??? How much will it contribute to my overall weakness. Another impetus to resume chemo was that my blood tumor marker climbed from 321 to 487, which was NOT good news.

My appetite is good. I eat just about all the foods I like and don't eat the ones I don't like. I don't have direct cancer pain, but occasional GI pain from gas, bloating, diarrhea, etc. but can't seem to nail down what causes it to flair up. My back pain continues to lessen. I still hurt if I forget to take a break every now and then, and am "up" for too long.

At the Wednesday appointment Barb and I really pushed Dr. Yee to address my wasting away. I reached a new low this week of 138 lbs.!!! He gave us absolutely no advice or recommendation other than to see a "dietitian". So we made the earliest appt. possible which was today. So Barb and I headed back to Hershey Cancer Institute this morning to consult with a nutritionist about my cancer cachexia: loss of weight — fat AND muscle!!

It was a very upsetting consult. For Barb especially who was so hurt that she questioned if she could ever go back to Penn State Hershey Cancer Institute again. I was distressed as well but not quit ready to boycott the joint.

Here's what happened:

During our consult with the nutritionist during which she mostly talked and listened little and repeated her agenda for me to ramp up my calories (because cancer significantly increases one's metabolism) we realized that we have been going to Hershey Cancer Institute for almost three years and not once was it suggested I see a nutritionist; not until I have melted away and become very weak. Yet, at every oncologist visit the last year I was weighed by a nurse and I shared about my concern about being so thin that I would "fall into the toilet". So weak that I can't climb more than two flights of stairs without a rest. I said I didn't expect to die from muscle atrophy. My body has been "melting away", but all the cancer doctor would do is recommend more chemo.

Here's the problem:
• The oncologist focuses on the cancer with little regard for my fatigue and other issues.
• The gastroenterologist we saw focused on diet(s) to remedy my diarrhea with no regard for my cancer and chemo suffering/side effects.
• The nutritionist focused on ramping up my caloric and protein intake, taking little note of my diarrhea issues.

ALL THE SPECIALISTS ARE TREATING THEIR SPECIALTY — BUT NOT THE PATIENT!

And ...... they don't listen very well or only hear what they want to hear pertaining their specific field.

When we asked the nutritionist if there were any clinical trials available to help stem cachexia, she simply said she couldn't answer that ... but NO ONE has offered to try to find out!

There you have it: my first major blog rant complete with ALL CAPS and exclamation points. Sorry about this. But the lesson I want you readers to learn from this is that the "conventional" health care system is made up of specialists who work in silos and it takes more foresight and management and self-advocacy than I had ever realized. There is little coordination or harmony and it is almost impossible to coordinate or pull together. And to think that soon I will be adding a phrenologist to my list of health experts to see how my subpar functioning kidneys can be addressed. Stay tuned.

And wish me luck with all this. I don't know how to express my appreciation for your support and faithful following this long story. (I guess the "long" part is okay on one level! I'm still kickin'...)

Blessings,

Rick


2 comments:

  1. Rick, I'm sorry to hear about your experience, but I'm not surprised. I've been dealing with my lung stuff for years (40 at this point) and have found precisely the same thing with lung folks. It's only been through my own research that I found other things besides western medicine that was helpful. This is not an ad for something else - just the same experience for a different disease. I have a friend who works in a cancer clinic in Marin Co. California. Her title is (I believe) Navigator. She is assigned to a patient when they come in and goes over everything that's going on with him/her. Diet, skin, sleep, bowels, etc etc. Then she offers everything that they now about from clinical trials to Jin Shin Jyutsu. It's amazing, and I'm pretty sure not that common. Good luck! M.

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  2. Hey, Rick, we sort of understand your predicament...I had a little bout with my gall bladder a year ago and no one said anything about omeprazole reacting to some heart meds. I sort of figured it out myself.
    Been pretty good since. The specialists should be required to meet at least whenever new meds are given to you. They should know about the effects of their great meds on other parts of your body and its functions.....so sorry to hear all of the bad news, but hopefully things will even out in a short time..keep asking questions....Blessings on you, friend. Ken and Mary.

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