Woe is me.
I'm not sure what that means. But I do know it is time to dust off the old blog!
This blog has more dust on it than my nightstand which, thanks to a fossil fuel-energized boiler has it's own fair share of grime on it. I was always told how clean hot water heat is, but have learned from experience that the need to clean increases with cold weather and the rattle-trap boiler running. Fuel oil is by far my least favorite energy source.
How is Ricky doing? Does the long absence portend problems?
The answer is the usual cancer "good news/bad news" thing.
Frankly, I just needed a blog break. I know I owe all you friends news updates and the last post has gone moldy. Posting to the blog just hasn't been a high priority. Sometimes a quiet interlude can be restful and peaceful. Think of me as having been on a Sabbatical or personal retreat.
My retirement from work was Nov. 14, a little more than one week ago. We had a farewell party catered and it was bittersweet. If I had my druthers I would have kept working but the energy level keeps dwindling and even 4-5 hours a day was often a challenge for me.
A co-worker asked what I was going to do with my new free time. "Kick Cancer," I answered, not really knowing what I will do or how I will handle being at home so much of my remaining time.
So after "skipping" a few chemo sessions because of feeling crappy, I resumed chemo again Nov. 19 and am scheduled for another infusion tomorrow. I am also taking the oral chemo tablets. The combination leaves me feeling ill much of the time. But I hope it is helping to "kick cancer".
The problem is: cancer kicks back. I have very little muscle left and virtually no fat on my bones. My weight loss has finally stopped at about 140 lb. in my birthday suit. Thank God for that. My pointy bones are a nuisance, especially my tail bone for sitting and my ribs for napping and my knock knees for fetal position sleeping. (I need to put a pillow or quilt between my legs so my knees don't bonk each other)
In summary, I feel my illness keeps taking a downward direction. Yet, far as we know it is still localized to the pancreas and hasn't invaded any other part of my innards yet. A CAT scan next month will hopefully confirm that.
My blood tumor marker has drifted upward a bit, but then I was off chemo for over a month.
I continue to have horrific digestive problems which are probably my #1 source of pain and discomfort.
My appetite is still good and I eat pretty much whatever I like and it doesn't seem to change the digestive problems.
I haven't had any pneumonia, colds or the like.
My broken back is healed and the associated pain has totally disappeared.
I am often very cold - shivering - and need the t'stat turned up. Hot tubs and hot showers and saunas I crave. (More fuel oil burned for hot water!!!)
I have difficulty sleeping when on oral chemo which is not fun. I have taken sleeping pills but am cautious due their habit forming tendencies.
So that is a blow-by-blow of how I am. Weak, tired, but still kicking.
FYI —Today (Tuesday before Thanksgiving) marks the third anniversary of the phone call from my family physician, Dr. Oh, that I have a mass on my pancreas. I will never forget what a dark day that was. The "official" cancer diagnosis came just before Christmas 2011 - three years ago. I am thankful for having lived this long and have exceeded the normal life expectancy of those with pancreatic cancer.
Now — about retirement. So far I haven't felt too bored as I have much to do. The transition from a group health plan from work to Medicare is not going as smoothly as I had hoped and was led to believe and getting answers to questions from Medicare is no simple task. Also, following up on insurance claims is time consuming and tedious. So I have been on the phone and emailing plenty. I have tasks with year-end work on my church Stewardship (read 'budget') Committee which I chair. I need to go through oversize clothes, sell stuff, etc.
So there is lots to do. The problem is I get so little done in a day. Maybe that's good if the work fills the day instead of getting the work done and then going stir crazy!
My biggest concern with quitting work is that I will become depressed and all this "me-time" will cause me to cave in on myself, so to speak. I force myself to go out and take short walks around the bustling borough of Akron and that is helpful, but as winter approaches, I will find that more a "chore" than I may want to do. Who knows?
So I'm not sure about retirement. If I had energy, I could volunteer, but I slowed down too much for that - I think. Maybe not. Maybe something will come up. Until then though I have what seems like a mountain of stuff to tend to. (I know it isn't that much, but it seems like it)
So my request from you is your prayers and wishes that "retirement" does not result in depression.
Being Thanksgiving week it is especially appropriate for me to post my thanks to all you faithful blog followers (I may have lost some readers with this long "lull") and others for your continued support.
Blessings to all,
Ricky
Tuesday, November 25, 2014
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
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
Sunday, September 21, 2014
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.
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
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". |
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
Wednesday, September 10, 2014
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
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
Friday, September 5, 2014
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:
My current problems — bad news bits you could say — are:
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
Sunday, August 24, 2014
I'm back home!!
I'm happy to report that Barb brought me home from the Hershey Penn State Medical Center in Hershey, PA today at 2 pm. That means I was in a hospital 6 hour shy of one whole week!
And a busy week it was. I can't express how good it is to finally be home. Hallelujah!!!
I went to the ER in Ephrata last Sunday night with severe belly pain. They diagnosed blood in the stool and elevated white blood counts indicated infection as well. I was diagnosed with acute cholangitis — an infection of the common bile duct, the tube that carries bile from the liver to the gallbladder and intestines. Bile is a liquid made by the liver that helps digest food.
Thursday I transferred via land ambulance to Hershey hospital (30 miles) to have a procedure through my mouth to check out a biliary stent installed 2.5 years ago which was the suspected site of origin of infection. The infection is e coli. They found two ulcers in the duodenum which appeared to be healing. I had been taking large doses of naproxene (Alleve) - which is hard on the stomach - to curb my back pain.
They "swept up" around the old stent which had debris around it and the cancer tumor had started to creep over the edge of it. Then they installed another stent (same size) inside the old stent. They are not removable.
Meanwhile, other problems keep popping up. The broken back wasn't enough. I had to add insult to injury!! Hershey is a teaching hospital and with all my issues and complications made me a model patient for the residents to study and discuss. The residents' rounds were very interesting. I saw and was examined by more docs than I could ever have imagined.
I hope to clear up the problems soon. Low kidney function. Diarrhea. Swollen feet. Lower leg deep vein thrombosis (both legs). I came home with anti-acid, anti-biotic and pain killer prescriptions.
I expect to see my oncologist, Yee, in the next couple weeks. I need to see my primary care physician, Dr. Oh, late this week to followup. Maybe followup with the orthopedic doctor regarding best steps to heal the back.
Some good news during the week was that my blood tumor marker did NOT go up dramatically after more than six weeks of no chemo.
I went in looking pretty yellow they said. I've come home my normal color. Thanks to you for your prayers and support. I was too busy and stressed to take visitors but felt your concerns for my misfortune throughout the week. Thanks to you all.
-Ricky
And a busy week it was. I can't express how good it is to finally be home. Hallelujah!!!
I went to the ER in Ephrata last Sunday night with severe belly pain. They diagnosed blood in the stool and elevated white blood counts indicated infection as well. I was diagnosed with acute cholangitis — an infection of the common bile duct, the tube that carries bile from the liver to the gallbladder and intestines. Bile is a liquid made by the liver that helps digest food.
Thursday I transferred via land ambulance to Hershey hospital (30 miles) to have a procedure through my mouth to check out a biliary stent installed 2.5 years ago which was the suspected site of origin of infection. The infection is e coli. They found two ulcers in the duodenum which appeared to be healing. I had been taking large doses of naproxene (Alleve) - which is hard on the stomach - to curb my back pain.
They "swept up" around the old stent which had debris around it and the cancer tumor had started to creep over the edge of it. Then they installed another stent (same size) inside the old stent. They are not removable.
Meanwhile, other problems keep popping up. The broken back wasn't enough. I had to add insult to injury!! Hershey is a teaching hospital and with all my issues and complications made me a model patient for the residents to study and discuss. The residents' rounds were very interesting. I saw and was examined by more docs than I could ever have imagined.
I hope to clear up the problems soon. Low kidney function. Diarrhea. Swollen feet. Lower leg deep vein thrombosis (both legs). I came home with anti-acid, anti-biotic and pain killer prescriptions.
I expect to see my oncologist, Yee, in the next couple weeks. I need to see my primary care physician, Dr. Oh, late this week to followup. Maybe followup with the orthopedic doctor regarding best steps to heal the back.
Some good news during the week was that my blood tumor marker did NOT go up dramatically after more than six weeks of no chemo.
I went in looking pretty yellow they said. I've come home my normal color. Thanks to you for your prayers and support. I was too busy and stressed to take visitors but felt your concerns for my misfortune throughout the week. Thanks to you all.
-Ricky
Friday, August 22, 2014
(Broken) Back from Vacation
I've had some "interesting", eventful vacations and trips since I last wrote to you. This blog post started out as an update on our summer vacations and trips. You will see that as the trip report progress they are less about our leisure time and more about my recent condition.
Vacation to Lewes, Delaware:
Friends of ours, Dean and Becky Good, own a house in Lewes, Delaware, a popular beach town and the first city in the first state. They generously invite people to join them for a weekend at the beach. We enjoyed good food, friends and lovely weather and walks along the shore.
Vacation from chemotherapy:
I haven't had chemo for 5-1/2 weeks and have gained 8 lbs - up to 159 lbs from 151 lbs. I've had fewer bouts with indigestion and feel much better. I am scheduled for blood test and appt with Dr. Yee Aug. 20. If prior history is an indication my tumor marker will be up considerable - but one never nows for sure. It is difficult to decide what treatment to take and when to stop. It isn't easy.
Vacation to SoDak and Minnesota:
Barb and I took a road trip west in the Toyota RAV4 July 28-Aug 12. Barb drove the whole distance of 4020 miles including some side trips. We picked up Adam, Annie and Owen in Mpls and went on to Freeman, SD to visit friends and family. While there I attended the Freeman Junior College/Freeman Academy alumni banquet along with my 92-year-old mother, Verda. She was the only one from the class of 1939 attending. And our son Charles was the youngest attendee from the class of 2004.
We said goodbye to Adam, Annie and Owen early Tuesday morning and with Charles we headed to northern Minnesota for a Baird family 'rebellion' at Cass Lake. All but one of Barb's siblings were able to make it and many of their children, spouses and grand nieces and nephews - in all 52 people. Highlights were a float trip down the Mississippi River and a fish fry at the Norway Beach picnic pavilion.
Trip to the ER:
Thursday, August 7, the same day as the Mississippi River float, I fell backward - tripped up by a trailer hitch - while helping my brother-in-law, Rick Baird, load a canoe. The next day it was apparent that something was not right with my back. Barb, Charles and I took a trip to the Bemidji Hospital ER where it was determined I had a compressed fracture of the 4th vertebrae. The treatment plan included pain killers, a muscle relaxer, rest and the advice to see my primary care doctor after we returned to Akron which we did.
Another trip to the ER:
Sunday, August 17 Barb took me to the ER in Ephrata which is about 3 miles from our house because I was suffering severe belly pain such that it was making breathing difficult. We learned that I was bleeding internally. It was determined that the source of the bleeding was lesions in his duodenum. Most likely caused by using naproxen to relieve the pain caused by the compressed fracture. The ER Drs. admitted him to the IMCU (Immediate Care Unit) to treat the infection and replace lost blood. In the process a blood infection was discovered which has been identified as an E-Coli bacteria likely generated by a plugged biliary stent which was installed a 2 1/2 years ago to aid in digestion after the cancer diagnosis.
Vacation to Lewes, Delaware:
Friends of ours, Dean and Becky Good, own a house in Lewes, Delaware, a popular beach town and the first city in the first state. They generously invite people to join them for a weekend at the beach. We enjoyed good food, friends and lovely weather and walks along the shore.
Vacation from chemotherapy:
I haven't had chemo for 5-1/2 weeks and have gained 8 lbs - up to 159 lbs from 151 lbs. I've had fewer bouts with indigestion and feel much better. I am scheduled for blood test and appt with Dr. Yee Aug. 20. If prior history is an indication my tumor marker will be up considerable - but one never nows for sure. It is difficult to decide what treatment to take and when to stop. It isn't easy.
Vacation to SoDak and Minnesota:
Barb and I took a road trip west in the Toyota RAV4 July 28-Aug 12. Barb drove the whole distance of 4020 miles including some side trips. We picked up Adam, Annie and Owen in Mpls and went on to Freeman, SD to visit friends and family. While there I attended the Freeman Junior College/Freeman Academy alumni banquet along with my 92-year-old mother, Verda. She was the only one from the class of 1939 attending. And our son Charles was the youngest attendee from the class of 2004.
 |
| Owen is not real sure about great grandma Verda holding him. |
We said goodbye to Adam, Annie and Owen early Tuesday morning and with Charles we headed to northern Minnesota for a Baird family 'rebellion' at Cass Lake. All but one of Barb's siblings were able to make it and many of their children, spouses and grand nieces and nephews - in all 52 people. Highlights were a float trip down the Mississippi River and a fish fry at the Norway Beach picnic pavilion.
Trip to the ER:
Thursday, August 7, the same day as the Mississippi River float, I fell backward - tripped up by a trailer hitch - while helping my brother-in-law, Rick Baird, load a canoe. The next day it was apparent that something was not right with my back. Barb, Charles and I took a trip to the Bemidji Hospital ER where it was determined I had a compressed fracture of the 4th vertebrae. The treatment plan included pain killers, a muscle relaxer, rest and the advice to see my primary care doctor after we returned to Akron which we did.
 |
| I hoped to add more photos from vacation but am struggling with laptop in bed and web network issues. This is Owen and his young life gives great hopel Love him dearly. |
Another trip to the ER:
Sunday, August 17 Barb took me to the ER in Ephrata which is about 3 miles from our house because I was suffering severe belly pain such that it was making breathing difficult. We learned that I was bleeding internally. It was determined that the source of the bleeding was lesions in his duodenum. Most likely caused by using naproxen to relieve the pain caused by the compressed fracture. The ER Drs. admitted him to the IMCU (Immediate Care Unit) to treat the infection and replace lost blood. In the process a blood infection was discovered which has been identified as an E-Coli bacteria likely generated by a plugged biliary stent which was installed a 2 1/2 years ago to aid in digestion after the cancer diagnosis.
4 days in the Ephrata Community Hospital - The list of problems that need to be solved is growing. We are grateful for the thorough and collaborative approach by the doctors here. The bleeding ulcers are resolved for now. The next step is to resolve the issue with the infection likely from the stent. On Thursday, August 21 it was agreed that he would transfer to the Milton Hershey Medical Center for that procedure. I rode in a transfer ambulance while Barb drove over after stopping at home to pack some things for the night.
Hershey Medical - It's Friday August, 22 around 11:00 am. Hershey is a teaching hospital which means that I have been poked, prodded and questioned by dozens of people.
I wish I had a video to share of the attending doc giving the drill to the shaking nervous wreck of a resident. Poor guy. I felt sorry for him. :It was like a scene from "House". "Review the patients problems" The resident start to speak but with too much history for the attending doc; "Next problem?" he barked. "And how are we going to fix these problems?" he quizzed. Meanwhle about another 5 residents are standing around. It was a most fascinating scene.
I had endoscopic surgery at 1 pm. We have yet to hear from the docs regarding the "success" of the procedure. But I assume no news means no serious problems.
I 'm sorry for the long blog break but the broken back pain and all the resulting issues have been a larger dose of the REAL than I wanted to or could DEAL with. We are working to "knock down" each problem "in order" to help me back to a more complete recovery.
1. Stop the bleeding ulcers - DONE
2. Clear out the e coli infection - NEARLY COMPLETE (I think)
3. Manage my swollen "porky pig" legs (embolism)
4. Deal with the threat of chronic lower leg clots coming up into my lungs
5. Manage pain from my broken vertebrae
6. Regain strength and mobility
7. Fight the cancer
As always, I appreciate your prayers of support.
Ricky
Tuesday, July 1, 2014
Snapshots
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| Owen Putnam Schrag, posing with his mom, Annie and dada, Adam. He is a good time. |
Our whole family was together and enjoyed a few outings in the grass and spent most of the time enjoying our time together with our focus on our son/grandson, Owen, who is so precious.
 |
| Owen, 9 months old, and his hairless, saggy- and wrinkle-skinned grandpa getting acquainted. His dad, Adam, and uncle Charles have hair all over their heads so I was an new and interesting relic for him to see. |
Blogger seems to require some text between photos or it won't place them where I want. Typical new technology not letting me be in control. I like being in control - not the technology. Don't get me started about my feelings toward the audio center (formerly known as the radio) in our new car. I find it most unfriendly, but maybe better than one in a Dodge we rented once. Oh, and the temp control system (formerly known as the heater and air conditioner). That has a mind of its own too!!!
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| Here we are on a cool Sat. eve taking in a concert at Music in the Orchard at Hans Herr House in Willow Creek. L-R, son Charles, his friend and ours Anna, mommy Annie, Owen enjoying the grass. Grandpa and Grandbee (I think his maternal grandmother is Grandcee [Cathy]) sitting in back. Owen likes the outdoors and didn't mind the cool evening compared the scorching summer heat in his hometown of Fresno, California. |
I didn't take any pictures while family was here and am glad other family members shared these with me so I can post them here.
 |
| Owen listens to Daryl Snider on guitar and Frances Miller on violin as they entertain the orchard crowd. Frances is married to Charles's friend Tim Sauder who went to Canadian Mennonite University the same year Charles did. |
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| Owen interacting with Charles's friend Anna Harrington. Thanks for joining us Anna! That was a special treat. |
I am in the middle of chemo by infusion (Abraxane) and oral (Xeloda). I definitely am feeling their effects. Hand and feet are numb. I worked 8 hours today and came home shelled. I fielded some ugly phone calls and they took their toll on me. I plan to reduce my work time to a more reasonable shift length starting later this week.
Tomorrow morning Barb is taking me to Hershey for blood work at 7:30 am and chemo at 8 am. That's as early as I've every gone. I generally takes about 3.5-4 hours for an infusion. Thursday I go back for the $9000 Neulasta injection to promote white blood count.
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| Owen and Grandbee Barb sloppy kissing. This at a picnic in Long's Park in Lancaster City |
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| Owen likes the outdoors and water, both strong Baird traits. He really enjoyed this swing time. |
My endoscopic procedure to obtain larger amounts of tumor tissue failed. The plan was to send the tumor tissue (cancer cells) to a lab for extensive molecular analysis to determine more about their makeup and then determine what treatment will be most effective against them. The doctor said when he tried to pierce the tumor with the needle to get tissue it basically pushed against a hard fibrous mass and failed to collect the tissue. The tumor has largely necrotized (died). But Dr. Yee was quick to add that it is not benign or safe to ignore. I guess I wasn't pinning large hopes to this process, so the fact that it failed hasn't been a big disappointment.
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| Mommy Annie caught this great moment between dada and little Owen on our couch. Both happy. Me too. |
We don't have any major plans July 4 but look forward to the day off. I should have taken a photo of Barb's box garden. We have been enjoying three kinds of fresh lettuce and radishes. You just can't do better than garden-fresh lettuce. Maybe I will include a pic in a future post.
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| Owen sitting on the car console next to Grandpa Ricky as together they learn the RAV4 features and controls. |
That's it for now. Owen is pretty dang cute, eh? He's also charming and personable. These will not be last photos of him you'll see here. Barb and I look forward to a Baird family reunion in Cass Lake, MN, with a spur trip to visit my family in SoDak the end of July and early August.
Best to everyone
Ricky
Sunday, June 15, 2014
The surprise of my life!
Last week was my NO CHEMO week! And that helped me last Thursday starting out just great. I was feeling fine and went to work for eight hours. Meanwhile, Barb, who recently lost her passport, made a trip to Philly to expedite getting a new passport - fast - needed for her upcoming trip to Canada the end of this month.
I came home pretty shelled and took a late afternoon nap while Barb was still in Philly meeting with MCC East Coast colleagues. I cooked some Johnsonville brats, sugar peas and penne for supper during which Barb texted me that she decided to stop and shop at IKEA - the Swedish self-assemble furniture and housewares box store. She knows it's better for her to do that without me because I have started to express resistance to IKEA shopping.
She texted an hour later that she didn't start home when she planned and would be home a little late. Meanwhile, whilst washing some dishes (we don't have a dishwasher) I was overcome with the need to visit what we pancreatic cancer survivors call the "necessary room". While on the throne I heard Barb come home. I hear her come in the kitchen door and through the bathroom door we greet each other. And she says, "I have a full van to unload". And I think, "Oh no, what kind of buying binge did Barb go on? and what uncomfortable IKEA furniture did she buy?"
I finish my business and walked directly the sink to finish the dishes, so I could help Barb unload the van. Then Barb comes up behind me and said, "Look what I've got." I turn around and see her holding what looked like our grandson, Owen, who lives in Fresno, Calif. At very first instant, I thought she had a special life-size doll of Owen made for us to play and engage with during our long absences. Then Owen moved his head and I thought: "What an incredible doll! A perfect replica in every way. And animatronic too." I could not believe at first that she was actually holding our live grandson — but she was. But where were Owen's mom and dad? Barb didn't kidnap Owen, did she?
Soon our son, Adam, wife, Annie, from Fresno AND, low and behold, our other son, Charles, and hist friend, Anna, from Seattle, Wash., came through the kitchen archway to greet me. I can not describe how absolutely blown away I was. I fell apart as I greeted each one with a hug and tear-filled eyes. They had come to visit me for Father's Day and had kept me totally out of the loop! It was a total surprise to me. Barb and the family had secretly and very successfully organized these trips all the way to PA. Now Barb did mention something a few week's ago about a surprise for Father's Day. She asked me if I wanted to know what she was planning. I said I was indifferent, thinking she was planning a weekend away to the beach or fly to Detroit to see the Twins play the Tigers in Comerica Park, or who knows what. But THIS? It did not cross my mind.
The family will be flying out on Tuesday. Barb also secretly arrange for me to have Friday and Monday off work. Thank you, Smilebuilderz, LLC! We went to Hans Herr Music in the Orchard last night and had a picnic with our church small group at Long's Park summer music concert tonight. Adam contributed to our church worship this morning with an interesting presentation on "Protest and Public Art". He focused on public art about/protesting US military use of drones. I was so happy to see him in his teacher mode. He gives a damn good lecture, if I am allowed to brag a little. I would enjoy taking a class of his.
We've played a few hands of a Monopoly Deal card game that was new to me and has ambiguous/incomplete rules regarding the use of Wild Cards, which has resulted in some lively discussions and raised tensions. But we spend most of our time gazing at and playing with Owen who is so engaging and fun. He is a very relaxed, cute, charming baby. Having him visit and become a little more familiar with his hairless, saggy- and wrinkle-skinned, scary-looking grandpa has meant so much to me. At first he wasn't sure what to think of me. He had some fear or reservations, but definitely "knows" me better after a couple of days and we get along great. Grandbee Barb is also energized by the family visit and the opportunity to spoil him.
So, this is definitely my most memorable and best Father's Day ever. It has decidedly pushed a memorable Father's Day about 10 years ago into second place. That's when the family decided to buy me a Big Green Egg outdoor charcoal grill/cooker/smoker. They knew I wanted one, but we all had difficulty justifying spending $800 for an outdoor cooker. But they did and I've had loads of fun with it and the family has benefitted from some pretty good food off that grill.
I hope all the dad's out there had a great Fathers Day. I sure am having a great 4-day Father's Day that could well be the envy of other dads out there. I'm so blessed to have such a great loving family.
I'll try to post some pictures later and up date you on my cancer as well.
Ricky
I came home pretty shelled and took a late afternoon nap while Barb was still in Philly meeting with MCC East Coast colleagues. I cooked some Johnsonville brats, sugar peas and penne for supper during which Barb texted me that she decided to stop and shop at IKEA - the Swedish self-assemble furniture and housewares box store. She knows it's better for her to do that without me because I have started to express resistance to IKEA shopping.
She texted an hour later that she didn't start home when she planned and would be home a little late. Meanwhile, whilst washing some dishes (we don't have a dishwasher) I was overcome with the need to visit what we pancreatic cancer survivors call the "necessary room". While on the throne I heard Barb come home. I hear her come in the kitchen door and through the bathroom door we greet each other. And she says, "I have a full van to unload". And I think, "Oh no, what kind of buying binge did Barb go on? and what uncomfortable IKEA furniture did she buy?"
I finish my business and walked directly the sink to finish the dishes, so I could help Barb unload the van. Then Barb comes up behind me and said, "Look what I've got." I turn around and see her holding what looked like our grandson, Owen, who lives in Fresno, Calif. At very first instant, I thought she had a special life-size doll of Owen made for us to play and engage with during our long absences. Then Owen moved his head and I thought: "What an incredible doll! A perfect replica in every way. And animatronic too." I could not believe at first that she was actually holding our live grandson — but she was. But where were Owen's mom and dad? Barb didn't kidnap Owen, did she?
Soon our son, Adam, wife, Annie, from Fresno AND, low and behold, our other son, Charles, and hist friend, Anna, from Seattle, Wash., came through the kitchen archway to greet me. I can not describe how absolutely blown away I was. I fell apart as I greeted each one with a hug and tear-filled eyes. They had come to visit me for Father's Day and had kept me totally out of the loop! It was a total surprise to me. Barb and the family had secretly and very successfully organized these trips all the way to PA. Now Barb did mention something a few week's ago about a surprise for Father's Day. She asked me if I wanted to know what she was planning. I said I was indifferent, thinking she was planning a weekend away to the beach or fly to Detroit to see the Twins play the Tigers in Comerica Park, or who knows what. But THIS? It did not cross my mind.
The family will be flying out on Tuesday. Barb also secretly arrange for me to have Friday and Monday off work. Thank you, Smilebuilderz, LLC! We went to Hans Herr Music in the Orchard last night and had a picnic with our church small group at Long's Park summer music concert tonight. Adam contributed to our church worship this morning with an interesting presentation on "Protest and Public Art". He focused on public art about/protesting US military use of drones. I was so happy to see him in his teacher mode. He gives a damn good lecture, if I am allowed to brag a little. I would enjoy taking a class of his.
We've played a few hands of a Monopoly Deal card game that was new to me and has ambiguous/incomplete rules regarding the use of Wild Cards, which has resulted in some lively discussions and raised tensions. But we spend most of our time gazing at and playing with Owen who is so engaging and fun. He is a very relaxed, cute, charming baby. Having him visit and become a little more familiar with his hairless, saggy- and wrinkle-skinned, scary-looking grandpa has meant so much to me. At first he wasn't sure what to think of me. He had some fear or reservations, but definitely "knows" me better after a couple of days and we get along great. Grandbee Barb is also energized by the family visit and the opportunity to spoil him.
So, this is definitely my most memorable and best Father's Day ever. It has decidedly pushed a memorable Father's Day about 10 years ago into second place. That's when the family decided to buy me a Big Green Egg outdoor charcoal grill/cooker/smoker. They knew I wanted one, but we all had difficulty justifying spending $800 for an outdoor cooker. But they did and I've had loads of fun with it and the family has benefitted from some pretty good food off that grill.
I hope all the dad's out there had a great Fathers Day. I sure am having a great 4-day Father's Day that could well be the envy of other dads out there. I'm so blessed to have such a great loving family.
I'll try to post some pictures later and up date you on my cancer as well.
Ricky
Sunday, June 1, 2014
Ups and Downs
Okay, it's time for a status update.
In a nutshell, I continue to ride the cancer/chemo roller coaster —which we unaffectionately call the 'chemo coaster'. I know it's cliché, but reality is I have my ups and downs, my highs and lows. Admittedly, the highs seem less high and less frequent than in the past. I have some overall "up" days and weeks (mostly when on chemo break), but within those larger time frames my distress level changes from hour to hour; especially since I've been having digestion issues. Today, for example, I woke up feeling great. After a small breakfast w/chemo pills I still felt fine until two hours later, within minutes, I felt terrible. Missed church.
Here is a timeline to bring you up-to-date with more details, blow-by-blow (boring):
November 2011 — CT shows mass on pancreas
December 2012 — Biopsy shows cancer. Diagnosis: pancreatic adenocarcinoma
Fast forward 2-1/2 years and 60 pounds later (lighter) to—
May 20, 2014 — Barb and I met w/hospice nurse (Lancaster city - not Hershey)to learn more about hospice options. I'm not hospice-ready now thankfully, but she is referring me to some palliative care physicians who may have some help for my dehydration and my diarrhetic malaise. So far no call from that doc and I will need to followup on this.
May 21, 2014 — I had blood test and visit w/Dr. Yee. I was scheduled for chemo as well, but wimped out, pleading too fatigued and weak. Blood T-marker came down from 375 to 300 which is a nice reverse in a bad trend. He explained some options we may have, depending on the outcome of the upcoming PET scan. He agreed to infuse a jug of saline to re-hydrate me since my port was accessed and chemo chair was reserved. I can assure you no matter what the scan shows he wants to keep chemo going with not much regard for my weight loss and defecation disorder. I/we will have some decisions to make coming up.
Friday, May 23 — I was anticipating and prepped for a first-ever for me PET scan to have a look at my innards in a different way, in a different light. Upon check-in we were surprised and disappointed to learn that my insurance denied authorization for the procedure. They cost about twice as much as a CT scan and are normally authorized when cancer is Stage IV.. So I had a contrast enhanced CT scan instead of the PET scan. I felt rotten that evening.
Wed., May 28 — discussed CT scan w/Dr. Yee. The great news is there is no sign of spreading cancer! No findings of metastatic disease in the chest, abdomen and pelvis (scanned). It is still locally advanced, but contained. I'm fine with this result. There is some enlargement and further dilation of the pancreatic duct which will be watched. We discuss treatment. I am feeling great due to two week's off chemo and reluctantly agree to start a new cycle of the same chemo I've been on: Abraxane infusion once a week for two weeks and Xeloda oral chemo (two pills every morning and two pills every night) during those same two weeks. So I go on a chemo "picnic" and also receive two units of blood to help my anemia. It was a long day in the infusion room from 10:30 to 4 pm. My faithful wife by my side the whole time. She is really wonderful.
Friday May 30 — wasn't scheduled to work and was happy for that because I felt chemo-crappy the whole day.
Saturday, May 31 — felt much better and went into work for 8 hours with a nice one-hour lunch break with Bob and Phyllis Hartzler and Barb.
Tuesday, June 3 — we meet with a gastroenterologist at Hershey about my trots. We are not expecting much new from this, but feel it can't hurt to get another opinion about how to battle diarrhea.
Wed., June 4 — chemo infusion in Hershey
Thursday, June 5 — Neulasta injection in Hershey to stimulate white blood cell growth.
Monday, June 9 — Endoscopy in Hershey snip some more tumor tissue for another biopsy. This is for genetic testing the cancer cells to better inform the doctor which chemo is most effective. It is called CARIS testing.
I'll stop there for now. As you can see there are many trips to Hershey. Amidst all this I am working on getting Medicare coverage and supplemental insurances in place. Also, I don't understand my disability insurance and want to learn what I have, now that I qualify for Social Security. It's all a lot to ponder - sometimes in a fog.
That's it. It's an interesting journey. I don't recommend it to anyone. Thankful for the time I've been allowed and am looking forward to the summer heat as I am often still wearing sweatshirts. And I most certainly appreciate my support systems. All are wonderful. Videos of grandson, Owen, and FaceTime with him and family are highlights of my days.
On the "support" note, I am very, very happy to report that Barb is starting a new work schedule tomorrow, wherein she will be working a flexible half time schedule using accumulated Family Medical Leave and sick days. She has worked 15 years for Mennonite Central Committee and she really appreciates and values this pressure valve release. I feel bad that I burn up so much what should be her personal time. She's a saint. Plain and simple.
Later,
love,
Ricky
In a nutshell, I continue to ride the cancer/chemo roller coaster —which we unaffectionately call the 'chemo coaster'. I know it's cliché, but reality is I have my ups and downs, my highs and lows. Admittedly, the highs seem less high and less frequent than in the past. I have some overall "up" days and weeks (mostly when on chemo break), but within those larger time frames my distress level changes from hour to hour; especially since I've been having digestion issues. Today, for example, I woke up feeling great. After a small breakfast w/chemo pills I still felt fine until two hours later, within minutes, I felt terrible. Missed church.
Here is a timeline to bring you up-to-date with more details, blow-by-blow (boring):
November 2011 — CT shows mass on pancreas
December 2012 — Biopsy shows cancer. Diagnosis: pancreatic adenocarcinoma
Fast forward 2-1/2 years and 60 pounds later (lighter) to—
May 20, 2014 — Barb and I met w/hospice nurse (Lancaster city - not Hershey)to learn more about hospice options. I'm not hospice-ready now thankfully, but she is referring me to some palliative care physicians who may have some help for my dehydration and my diarrhetic malaise. So far no call from that doc and I will need to followup on this.
May 21, 2014 — I had blood test and visit w/Dr. Yee. I was scheduled for chemo as well, but wimped out, pleading too fatigued and weak. Blood T-marker came down from 375 to 300 which is a nice reverse in a bad trend. He explained some options we may have, depending on the outcome of the upcoming PET scan. He agreed to infuse a jug of saline to re-hydrate me since my port was accessed and chemo chair was reserved. I can assure you no matter what the scan shows he wants to keep chemo going with not much regard for my weight loss and defecation disorder. I/we will have some decisions to make coming up.
Friday, May 23 — I was anticipating and prepped for a first-ever for me PET scan to have a look at my innards in a different way, in a different light. Upon check-in we were surprised and disappointed to learn that my insurance denied authorization for the procedure. They cost about twice as much as a CT scan and are normally authorized when cancer is Stage IV.. So I had a contrast enhanced CT scan instead of the PET scan. I felt rotten that evening.
Wed., May 28 — discussed CT scan w/Dr. Yee. The great news is there is no sign of spreading cancer! No findings of metastatic disease in the chest, abdomen and pelvis (scanned). It is still locally advanced, but contained. I'm fine with this result. There is some enlargement and further dilation of the pancreatic duct which will be watched. We discuss treatment. I am feeling great due to two week's off chemo and reluctantly agree to start a new cycle of the same chemo I've been on: Abraxane infusion once a week for two weeks and Xeloda oral chemo (two pills every morning and two pills every night) during those same two weeks. So I go on a chemo "picnic" and also receive two units of blood to help my anemia. It was a long day in the infusion room from 10:30 to 4 pm. My faithful wife by my side the whole time. She is really wonderful.
Friday May 30 — wasn't scheduled to work and was happy for that because I felt chemo-crappy the whole day.
Saturday, May 31 — felt much better and went into work for 8 hours with a nice one-hour lunch break with Bob and Phyllis Hartzler and Barb.
Tuesday, June 3 — we meet with a gastroenterologist at Hershey about my trots. We are not expecting much new from this, but feel it can't hurt to get another opinion about how to battle diarrhea.
Wed., June 4 — chemo infusion in Hershey
Thursday, June 5 — Neulasta injection in Hershey to stimulate white blood cell growth.
Monday, June 9 — Endoscopy in Hershey snip some more tumor tissue for another biopsy. This is for genetic testing the cancer cells to better inform the doctor which chemo is most effective. It is called CARIS testing.
I'll stop there for now. As you can see there are many trips to Hershey. Amidst all this I am working on getting Medicare coverage and supplemental insurances in place. Also, I don't understand my disability insurance and want to learn what I have, now that I qualify for Social Security. It's all a lot to ponder - sometimes in a fog.
That's it. It's an interesting journey. I don't recommend it to anyone. Thankful for the time I've been allowed and am looking forward to the summer heat as I am often still wearing sweatshirts. And I most certainly appreciate my support systems. All are wonderful. Videos of grandson, Owen, and FaceTime with him and family are highlights of my days.
On the "support" note, I am very, very happy to report that Barb is starting a new work schedule tomorrow, wherein she will be working a flexible half time schedule using accumulated Family Medical Leave and sick days. She has worked 15 years for Mennonite Central Committee and she really appreciates and values this pressure valve release. I feel bad that I burn up so much what should be her personal time. She's a saint. Plain and simple.
Later,
love,
Ricky
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