Not Thinkin' 'Bout Lymphoma (much)

Not Thinkin’ ‘Bout Lymphoma (much)

I have been remiss in my declaration I would be writing about my daily encounters living with Non Hodgkins Lymphoma. Several factors contributed to this lack of communication. I made the declaration in the light of several functions I had to complete each day. One, is I was losing track of whether I had done my daily bowel movement and/or whether I had consumed my medications. My thinking at the time was it would help me keep track. 

After my last post I then went off to Kaiser Sunnyside for my third cycle of chemo. The third cycle flowed nicely and I had all this wonderful hospital staff available to fulfill my desires. It wasn’t necessary for me to track medications or bm’s. The 3rd week flowed nicely. I was out of the hospital around 4 on Friday and home by 8. We stopped for dinner in Portland. The next morning I awoke in great discomfort. Left side painful and taking a full deep breath was restricted. This discomfort lasted until the following Saturday when I awakened and could take deep breaths with no feeling of restriction. 

The chemo cycle is measured in 3 week long cycles. So, if I started chemo on the first day of the month, then I received chemo for five days, 24/7, and went home on the fifth of the month. I would return 3 weeks later, in this hypothetical that would be the 22nd of the month, the first day of the cycle is always the first day of chemo, so the 22nd is 3 weeks later. My point in explaining the cycle is to elucidate how I fared after chemo. The cycle is divided into 3, week one, chemo, week two, suffering, and week 3 feeling OK.

I am writing this during week four(four! You said chemo was in three week cycles). I was awakened last Friday(end of week three) by a call from my oncology Nurse Practitioner who explained my CT scan from a few days before revealed my thoracic cavity was in good shape, but there appeared to be no indication tumors in the abdominal area, below the abdominal wall were being effected by the chemo. The NP indicated it was a pretty large mass and I thought ‘where did that come from.’ My Oncologist wanted a PET scan which will illuminate dead cells from live ones. Live cells will show as hot and dead as cold. I had the PET scan Monday. Wednesday the NP and I talked about what it all means. Essentially my treatment is being changed to one day a week and only a few hours at a time. The exception being this coming Monday, which is my first day of treatment in the new cycle. Monday I should expect to be there for 8 hours. The new cycle will introduce two new drugs to my system and one I have been taking since day one. Three drugs instead of four. Oh yes and I get a new steroid, dexamethasone, which is supposed to be even more potent than the prednisone I was given at Sunnyside. And if you are keeping score then it is four drugs instead of five.

So, there you have it. What’s happened to me and what I/we can expect in the future. I will keep you informed.

Cycle 1, Day 1, March 23, days 2 and on much like the first week home after the Sunnyside sessions. Lots of discomfort. Memory says it actually increased March 30, Day 8, Cycle1, to the worst I have experienced, on the 1 to 10 pain scale. I’m talking 9-10 one overnight in my left shoulder. No, there isn’t cancer in my shoulder area. Day 9 my discomfort formed a ‘U’ shape with my abdominal wall forming the bottom and the ribs defining the arms of the ‘U’. The days 2 through 5 were uncomfortable with breathing being effected. Deep breaths were resisted. Then the discomfort backed off to be primarily the left side from the belly button to the collarbone. Day 8, Cycle , then followed the most painful days, 9-13, Day 12 being the overnight experience of rolling onto my left shoulder and feeling the white hot expression “Get the fuck off me, NOW!!!” I did. The right side felt fine. Day 14 I awoke to a lump feeling in the area of the stomach B cell but below 5 on the pain scale at its worst. And the discomfort receded the last few days to April 14, Cycle 2, Day 1. Another 8 hour day. All 3 drugs were administered with no reaction on my part other than peeing a lot due to a whole lot of saline before, during and after each drug. Today I feel a lump in my B cell location and that is all. Thus why I am writing this today. I feel like it. 

There may be another reason I feel ok today. After yesterday's treatment, 4/14, on the way home I received a phone call from a Nurse Practioner with Kaiser and is the STEM cell liaison between Kaiser and OHSU who is the contractor for all Kaiser STEM cell therapy. "Wow", methinks to self, "STEM cell therapy I'm intrigued." STEM cell therapy is the next step if the current chemo regimen does not eliminate the B cell mass on the stomach. Dameon is driving so I can devote all my attention to the NP's spiel. 

I'm so glad Dameon is driving. The STEM cell will start within the same 3 week recovery period after Cycle 3, Day 21 or on Day 21. A bone biopsy happens first to determine STEM cell viability(my description). If that looks good then they do the separation of the good STEM cells and freeze them. Then a 2 week hospital stay at OHSU while they pour on the vicious drugs, I could experience bone pain during this part of the procedure. After two weeks of what sounds to me like first class torture, bone pain scares me for some reason, I then am on a 30 day watch at a home within one hours drive of OHSU. Google says I am one hour and ten minutes from Sunnyside. I would guess OHSU would be less maybe closer to an hour. The kicker, I need a driver available 24/7 if I have a reaction, fever being the most important indicator of a reaction requiring a STEM cell doctor's assessment and treatment. The driver doesn't have to be the same person 24/7, just a licensed driver. I am putting this out there now as I still have Cycle 2, Day 8, April 21, the short day 90-120 minutes. Then 2 weeks off to recover then Cycle 3, Day 1, May 5, followed by Cycle 3, Day 8, May 12, followed by 2 weeks of recovery ending May 20. Scheduled treatment days amount to 6 weeks April 15 to May 20. Add 4 to 6 weeks for STEM cell therapy and I could be enduring this disease until somewhere around the end of June. If the STEM cell therapy works then the last step is to infuse the frozen absolutely healthy cells back into the body making me cancer free, which, I admit, is a rather enticing outcome after possibly going through hell. 

So, how do I tie today's minor discomfort with yesterday's phone call from the STEM cell NP? I am taking it as motivation to the body to keep on getting rid of that B cell lymphoma. Today being comfortable means, to me, the B cell is being eliminated. I recommend Love Is Letting Go of Fear by Jampolsky. Thin book written by a pediatric oncology psychiatrist. It helps me shape my attitude toward the Lymphoma. I purchased it a long time ago, 40 years, so maybe its not in print anymore. Precious book. Hopefully my copy is packed away with my other print books. it would be a good meditation source.