Spring 2015 started today with the vernal equinox — although it hardly felt like it in the Eastern US (which includes Pennsylvania) where winter made an unwelcome comeback. Temps are well below "normal" and we have had intermittent snow for most of the day with temps hovering around 32°F. It's not really any problem. We have enough bread and milk to survive this inconvenience. However, like others who live here, I like to complain about the weather even if I have much bigger issues to deal with!! I am ready for normal or higher temps and some sunlight, but the forecast for the next seven days is highs only near 40°F.
That introductory paragraph is how Amish correspondents to The Budget start their weekly news column — with a weather report!! The Budget is an Amish newspaper based out of Sugarcreek Ohio, I believe. I enjoy reading it when I can find a copy.
Here's a short snort about what condition my condition is in:
Bottom line: I continue to have good days and bad days and am unable to dictate which, when and why. When I am sick it really knocks me down. It is definitely gut-related and I have several new medications to maybe help fill the "potholes" that are not only now dotting the PA highways, but also knocking me "off the road".
Yesterday Barb and I had our third visit with a Palliative Care Doctor (Dr. Probolus) in Lancaster City. Palliative care is focused on providing patients with relief from the symptoms, pain and stress of a serious illness—regardless the prognosis.
He suggested and prescribed a steroid that may improve my general feeling of well-being globally. It will take a few weeks to see if it works. He assured me it will not bulk me up. Don't expect me to transform into Arnold Schwartzenegger.
I continue to slowly decline in strength, balance and comfort. The train seems to keep slowing down.
We also decided that I would start using home hospice care; staring with maybe one home visit per week and exploring options going forward (or is it backwards, in this case??). The hospice nurse will help with making assessments of me and our house, etc. I feel very good about this decision; as does Barb since demands on her at her job at Mennonite Disaster Service have increased due to co-worker's maternity leave. Yesterday a big burden was lifted from her shoulders as a decision was made to postpone a MDS conference that was scheduled in Canada in April. Hospice care will help Barb as well as she balances her work with my helplessness. Hospice should reduce the time she worries how I am doing.
A week ago Saturday Barb and I went to the Ephrata Hospital ER because I was so weak, sick and had no appetite. Barb diagnosed me as dehydrated. I concurred. And we were correct. When I came in my BP was like 72/60 and as the saline dripped my BP went up and was just 95/?? when I went home FIVE HOURS LATER.
But who cares how long it took. I felt much better. I am drinking plenty of fluids, but my body just doesn't adsorb it (or is it absorb??. I hate that I can't keep these straight. Anyone with a mnemonic or tip for correct usage please email or call me to discuss). Anyway, the fluid simply "goes through me".
I believe I will discontinue chemotherapy and focus on comfort.
Barb and I still plan to fly to SD next Wed. March 26 (and return Mon. March 30) to visit my family and now some of Barb's family which is also converging on the little town with the big ethnic meal (Schmeckfest. google it)
I look forward to this with some trepidation. Barb is quite worried about the air travel Yes, we will have O'Hare!!. I am more worried I'll make the trip okay but may have my "bad days" while there.
I don't like the fact that I can't gorge myself at the meal and on chislic at the local bar.
We plan to see the musical Big River Thursday eve and have the family-style meal on Saturday night. We also plan to have a private family brunch in the Salem Home, where my 93-year-old mother, Verda, lives.
March 5 I had paracentesis done in which they drained lots of excess fluid from my abdomen. I filled and one-half liter-sized jugs. The use a needle in my side. The fluid was analyzed and didn't show other active cancer action.
I have remained busy enough that I don't have any serious bouts with depression except when I am too sick to even work on my projects.
They include: getting income tax package to tax preparer, selling some more stuff on Craigslist and eBay, watching NCAA mens basketball, labeling pill bottles for quick dispensing, solving soduko or sudoko puzzles (NOT THE KNIFE—this falls in the same category as 'absorb' and 'adsorb'), going to the bathroom, filling out insurance applications, etc.
As usual I write too much and dish out some very boring information ... but ... inquiring minds want to know.
Your prayers and kind thoughts, words and deeds are the "coal" that fuels this old steam engine and—along with the pills—helps keep it going down the track.
Keep shoveling.
/Rick
Friday, March 20, 2015
Monday, March 2, 2015
New REAL problem to DEAL with
I am aware it's been about six weeks since I've posted so here's the latest:
I've been off chemo and struggling with making a decision about ongoing chemotherapy versus committing to strictly palliative care. I had a CT scan last Thursday and thought I would decide on Friday based on the scan and after consulting with my cancer doctor (Yee). My thinking was: if the scan showed tumor stability I would start another round of chemo, or, if it appears to metastasizing I would not do chemo.
As it turns out I postponed making a decision for another month. So March will be chemo-free for me. I meet again with Dr. Yee the first week of April. I kicked the can down the road.
The CT scan showed two significant new developments. First, there is a new 8 mm opacity in the top of my right lung. We don't know if it's cancer and we are not actively seeking to determine that at this time, but something to keep an eye on. Secondly, the scan showed how my abdomen is filled with fluid — it's called ascitic fluid.
I didn't need the scan to know that my abdomen is full of fluid. I came on last Wednesday rather suddenly and is giving me considerable discomfort. I think I now have a sense of what it feels like to be pregnant!
Dr, Yee approved a paracentesis (draining of the fluid) for me this week, but I am still awaiting to hear from the scheduler when it will be!!??!! I would like some relief. My belly is rock hard.
Regardless, this fluid build-up concerns me more than anything. I think it is an indicator of new "chapter" in my journey with this unwelcome guest. They will analyze the fluid after draining and maybe some it will provide some new information. I don't know if I am to expect re-occurrence soon or if at all. It is unclear what causes it, but it seems like cancer victims are prone to this.
The tumor on the top of my pancreas had grown slightly since my last scan in December. It is starting to close off my SMV and SMA (superior mesenteric vein and artery) so new "collateral" vessels are growing around to bypass the restricted vessels.
We discussed other possible treatment including hypothermic intraperitoneal chemotherapy (HIPEC). This procedure is when they take warmed anti-cancer drugs and inject them into the cancerous area of the belly and circulate it and slosh it around in your gut for a short time. But there is nothing planned for now. Yee said the spot on the lung wouldn't change my basic chemo regimen and he would continue with the infusion of Abraxane and pills of Xeloda, as before.
My bowels have improved a little the past two weeks and I'm happy for that. My appetite is good except my gut feels like it has no room for anything!! I've having about 2-3 days a week where I felt really pretty rotten. Then I would rebound and feel good and have good energy for few days until I had another bout of the "flu". It's been an up and down trip - these past two months.
Barb and I purchased airline tickets to go to SoDak the last week of March to visit my mom, our sons from Calif. and Wash., brothers, and other family and friends. It is also the second weekend for Freeman's notorious spring food festival—Schmeckfest. We plan to see the musical "Big River" and take in the meal of German ethnic foods. My prayer is to be on a peak during that time and not in a valley.
Barb has been exceptionally busy with work (Mennonite Disaster Service). She and a co-worker have taken over making volunteer placements, since the Volunteer Placement Coordinator is on a extended maternity leave. On top of that she has her own plate full of projects!
Balancing work and taking care of me have been challenging for Barb. She is scheduled to attend a leadership conference in Canada in April but won't leave me at home alone. My pastor, Barry, suggested we could mount web cams in every corner of every room and Barb could keep an eye on me via the Internet with a "Rickycam". Seriously, son Charles has agreed to come and babysit me again, but we will wait to see if she goes and how I will be monitored.
We are looking at various "lifeline", "help. I've fallen and can't get up" medical alert devices (usually worn around the neck or wrist - but haven't decided which one works best for our situation.
I have kept busy digitizing some of my analog audio and selling off equipment on eBay. It feels good to ship off the equipment but there are headaches with eBay and I don't find it a whole lot of fun. I still have a few items to auction off.
That's the report for now and so glad I could share about my bowels again!!
Thanks for being a faithful follower and supporter of my life.
Rick
I've been off chemo and struggling with making a decision about ongoing chemotherapy versus committing to strictly palliative care. I had a CT scan last Thursday and thought I would decide on Friday based on the scan and after consulting with my cancer doctor (Yee). My thinking was: if the scan showed tumor stability I would start another round of chemo, or, if it appears to metastasizing I would not do chemo.
As it turns out I postponed making a decision for another month. So March will be chemo-free for me. I meet again with Dr. Yee the first week of April. I kicked the can down the road.
The CT scan showed two significant new developments. First, there is a new 8 mm opacity in the top of my right lung. We don't know if it's cancer and we are not actively seeking to determine that at this time, but something to keep an eye on. Secondly, the scan showed how my abdomen is filled with fluid — it's called ascitic fluid.
I didn't need the scan to know that my abdomen is full of fluid. I came on last Wednesday rather suddenly and is giving me considerable discomfort. I think I now have a sense of what it feels like to be pregnant!
Dr, Yee approved a paracentesis (draining of the fluid) for me this week, but I am still awaiting to hear from the scheduler when it will be!!??!! I would like some relief. My belly is rock hard.
Regardless, this fluid build-up concerns me more than anything. I think it is an indicator of new "chapter" in my journey with this unwelcome guest. They will analyze the fluid after draining and maybe some it will provide some new information. I don't know if I am to expect re-occurrence soon or if at all. It is unclear what causes it, but it seems like cancer victims are prone to this.
The tumor on the top of my pancreas had grown slightly since my last scan in December. It is starting to close off my SMV and SMA (superior mesenteric vein and artery) so new "collateral" vessels are growing around to bypass the restricted vessels.
We discussed other possible treatment including hypothermic intraperitoneal chemotherapy (HIPEC). This procedure is when they take warmed anti-cancer drugs and inject them into the cancerous area of the belly and circulate it and slosh it around in your gut for a short time. But there is nothing planned for now. Yee said the spot on the lung wouldn't change my basic chemo regimen and he would continue with the infusion of Abraxane and pills of Xeloda, as before.
My bowels have improved a little the past two weeks and I'm happy for that. My appetite is good except my gut feels like it has no room for anything!! I've having about 2-3 days a week where I felt really pretty rotten. Then I would rebound and feel good and have good energy for few days until I had another bout of the "flu". It's been an up and down trip - these past two months.
Barb and I purchased airline tickets to go to SoDak the last week of March to visit my mom, our sons from Calif. and Wash., brothers, and other family and friends. It is also the second weekend for Freeman's notorious spring food festival—Schmeckfest. We plan to see the musical "Big River" and take in the meal of German ethnic foods. My prayer is to be on a peak during that time and not in a valley.
Barb has been exceptionally busy with work (Mennonite Disaster Service). She and a co-worker have taken over making volunteer placements, since the Volunteer Placement Coordinator is on a extended maternity leave. On top of that she has her own plate full of projects!
Balancing work and taking care of me have been challenging for Barb. She is scheduled to attend a leadership conference in Canada in April but won't leave me at home alone. My pastor, Barry, suggested we could mount web cams in every corner of every room and Barb could keep an eye on me via the Internet with a "Rickycam". Seriously, son Charles has agreed to come and babysit me again, but we will wait to see if she goes and how I will be monitored.
We are looking at various "lifeline", "help. I've fallen and can't get up" medical alert devices (usually worn around the neck or wrist - but haven't decided which one works best for our situation.
I have kept busy digitizing some of my analog audio and selling off equipment on eBay. It feels good to ship off the equipment but there are headaches with eBay and I don't find it a whole lot of fun. I still have a few items to auction off.
That's the report for now and so glad I could share about my bowels again!!
Thanks for being a faithful follower and supporter of my life.
Rick
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