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

Returning to work

This past Wednesday I had my back surgery followup appointment—one week after the procedure. The surgeon' s nurse said the two small holes made in the small of my back were healing nicely and the stitches were removed.

A bone biopsy taken while in my back was negative for cancer and the PA said the bone structure was fine and no signs of osteoperosis. I wasn't expecting either malady but always like to hear any positive news.

My pain and discomfort level has been diminishing since the surgery, but is not gone. I still pop a pain killer pill now and then. Generally, I feel best - with the least pain - when I awake but as the day progresses I get more and more tired and feel more discomfort.

The PA gave me approval to return to work. I had been working 4-5 hours most days in the dentist billing office and was itching to return after a 7-1/2 week absence. Well, I didn't waste any time and went to the office the next day where I was given a most fantastic welcome back by my colleagues!!

That first day back was interesting as I had several mental blocks on how access different areas of our office software and use a PC again (I use Mac at home)— including a couple passwords forgotten and two website lockouts and requests for new passwords. I felt very clumsy and disoriented and struggled to get much done. My co-workers did a nice job sharing my duties in my absence but did leave me nice stack of insurance papers to process and enter because they didn't want me to come back with nothing to do! That would have made feel unnecessary!! They are so thoughtful.

I went back to work on Friday and had much better handle on things and actually started to whittle down the stack of papers, but am uncertain I can keep up working only half days.

Here I am standing by my work station—blown away by the decorations and messages welcoming me back to work. Balloons, posters, candy mints and bling (my arm is obscuring the "star" clapper around my neck) were part of the festive "welcome back". 

It felt good to be back and work and I didn't have any serious discomfort; although at the end of the day I was tired and ready to go home. I don't have the stamina to work a full day. I am able to work part time - and miss all those days - because I am on Family Medical Leave which is used up after 12 weeks of full time work. I plan to keep working as long as I can and or am allowed to work.

Other good news is that the edema in my feet and lower legs has subsided almost completely and they feel nearly "normal".

In problem news, although my appetite is good and I eat a wide variety of healthy foods and some unhealthy foods I am continuing to not adsorb nutrients and am still losing weight. Yesterday I weighed 138 lbs. — a new low. With that I grow weaker as well. I will press hard to discuss this in detail with my oncologist at an appointment with him this Wednesday. I haven't decided if I will go back on chemo, but am leaning toward not taking chemo, especially since I am already not that spry.

Barb has completed her first week at her new job at Mennonite Disaster Service and she feels very good about her role there. She has her own office and has made a few "ergonomic improvements" to her chair, desk & computer monitor.

That's all for now. Thanks for reading.

Rick

Feeling fine AND a little taller after back surgery

It's looking and feeling more and more like autumn every day here in Pennsylvania as daylight shortens and the nights grow longer. Leaves are already falling from many trees. I am hoping for a nice long fall season and not an early winter.

Barb drove me home late this morning (Wednesday) after spending a night of being observed in Ephrata Community Hospital following back surgery yesterday. I am likely a millimeter or two taller than yesterday!!

Orthopedic surgeon Dr. Marc Oliveri performed a kyphoplasty procedure on my broken 3rd lumbar vertebra exactly one month to the day after I broke it (compression fracture) while visiting in Minnesota when stepping backwards I tripped over a trailer hitch and landed on my hip. Fortunately there was no nerve damage.

Dr. Oliveri likened the vertebrae to a series of empty pop cans stacked one on top of the other. The compression fracture is like a crushed pop can - thereby shortening the spine. The surgery employees a balloon in the compressed space to relieve pressure and pain from the compressed vertebra and then cement is injected into the balloon cavity which hardens and keeps them separated and relieves pain.

I wrote earlier that I watched a You Tube video of the procedure and was struck (literally, I believe) by the use of hammer. I asked Oliveri about it and he said yes, he uses a small hammer. I asked him to see it but he dissed me and they had me in a deep sleep before I was able to be more assertive about seeing it. If you are curious you can watch or fast forward through the video by clicking here. Like the video patient, I have two small holes in my back. No incision is necessary for this procedure.

It may be too early to know for sure but so far I feel like some of the pain and misery has already abated!!! I didn't take any pain killers last night and only one so far today. I was told to "take it easy" for one week and come in for followup next Wednesday. I think I walk better and more erect than before surgery.

That's the latest from my saga. And good news too. We appreciate all the texts, emails, cards, gifts and supporting concerns  and well wishes given to us during this most recent procedure.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Ricky

More "REAL" stuff than I care to DEAL with

My past four weeks have been filled with more interviews, inquiries, pricks, pokes, prods, palpatations and procedures than man is designed to endure. But I have persevered!! Here is some medical stuff in case you are interested. I'll start with some positive reports. My apologies for repeating as everything is so intertwined in my head, I have difficulty sorting everything out into a rational report.

Some good news to report is that the CT scan I had this past Wednesday shows that the pancreatic cancer is still locally contained. I'm still in Stage 3a or 3b (not sure which). That means it is confined to the tumor atop my pancreas and does not appear to have spread to other organs. Dr. Yee said the scan shows that the tumor may be a millimeter or two larger in dimension than in May 2014 and is further encasing the mesenteric artery. This means it is still inoperable. The tumor won't restrict flow through the artery and vein, he said.

Also, on the PLUS side.... Even  after going eight weeks without any chemo my blood tumor marker (CA19-9) actually went down and then up a little but is still at a level BELOW my June reading.  This was a very pleasant surprise. Dr. Yee wants to resume chemo Sept. 24, if I am ready because of the increased size of the tumor. I am not sure what I will do. The chemo lifestyle versus no chemo is a conundrum. To live longer miserably versus living shorter feeling semi-human????? Tough call.

Other good news:

• the GI bleed (two ulcers) has healed.
• the cholangitis infection is gone and I am off antibiotics
• the diarrhea is let up significantly
• my appetite is good and while reducing lactose intake eat good fresh foods of all kinds
• including filet mignon
• back surgery (kyphoplasty) to give pain relief is scheduled for next Tues. Sept. 9

My current problems — bad news bits you could say — are:

• Lots of discomfort from broken 3rd or 4th lumbar vertebrae
• Chronic edema in both legs is not pleasant
• Kidney function is below par and no one can explain why/what
• General weakness, instability with walking, limited mobility
• General malaise, restless feeling, wishing I could be back at work instead of at home on oxycodone

A little more about my back surgery: I will be anesthetized and stay one night in Ephrata Community Hospital. The procedure is minimally invasive. It involves using a balloon of some type to expand the vertebrae at the compression fracture to take off the pressure between the broken parts. Then a cement will be injected in the space made by the balloon which will harden and keep the broken parts from pressure on each other.

Last night I searched the Internet for a video of kyphoplasty and decided to watch a video of the procedure. I am not sure I recommend anyone watching a video of an upcoming surgery!!!! I will share that it involved a shiny stainless steel hammer striking a spike-like rod into the back. A friend said I should inquire if they lost the drill which would not appear to be so harrowing as pounding on a     rod. Maybe now I have too much information. I will ask to see the hammer before the anesthetic is given.

For fun and escape and diversion, Barb and I went to a mattress store and purchased some new mattresses today. After sleeping in motels and other people's beds on our trip to SD and Minn. we decided it is time to replace our 15+ year old beds.

Also, last Saturday we took in the move titled "Boyhood". It was as good as critic almost universally have said. 2 hours 40 minutes but engrossing and sticks with me. Thumbs up.

Sunday we plan to go to a Renaissance Fair near Manheim PA for a few hours. I will look for spots to sit and rest when I get too tired, but need to "get out" and be active and have some fun!!!!

I will confess a rather sad diversion for me is watching Twins baseball on my laptop computer. This is the very definition of masochism. The Minnesota Twins are again cellar dwellers in the American League Central division. They don't have a chance at a wild card or any post season action. They have been troubled all season with subpar pitching and not much power at the plate. It is a perverse punishment to watch baseball and even more odd to follow a struggling team. Oh well. We all have our little distractions. Right?

I was saddened to read on Caring Bridge that a fellow pancreatic cancer fighter, Raymond Becker, of Freeman, SD, died Tues, Sept 2, after falling in his home and having a brain bleed on Sunday. Raymond and I shared with each other occasionally about our journey with our unwelcome guest. He was a great example of a positive attitude and enjoying life to its fullest. I will miss his support of me.

That's all for now. Thanks to all of you for helping power me along this uncharted path.

Ricky