April 26, 2020

Discomfort has been primarily located on my left side. Remember my description from a week or so ago where I described the area of my discomfort was a U. The bottom of the U being my abdominal wall and the two upward arms more or less defined by the rib cage.  

April 27, 2020

Just spent one of the most uncomfortable nights ever.  Back spasms that would not quit. Beginning at the base of the spine the spasms would radiate up and out. Once during the night it was like a headache from hell. Spasms at the top of the spine and into the brain stem was a cause for concern, but, thank God, it was only a temporary sensation. Around daylight I noticed the spasms seemed to be lessening and I was able to reax enough to sleep. I have dealt with lower back spasms throughout my adult life and have found ways to relax those muscles and sleep. Last night those techniques were useless. The spasms were on the pulse, meaning each heartbeat was a spasm. There was no relaxing the muscles in question. The spasming was so great it seemed to me the only choice was to change my position in bed. Movement seemed to alleviate the discomfort, but as soon as I settled into a new position and started to relax the spasms would start anew. In fact, once during the night, I got up to pee and as I was standing over the urinal, I experienced a spasm starting at the base of the spine and radiating out to/through the hip bones. Peeing and spasming were two separate functions at the time. Peeing was not affected by spasming and spasming was not affected by peeing. 

As I sit here and relate last night’s experience, I am feeling the spasm when I stop moving around. Move and there is slight relief and be still for a few seconds and we get a mild, still annoying, spasm. Dameon and Sara, his Nurse Practioner specializing in palliative care, girlfriend, both wonder if I am drinking enough fluids, H2O. I thought I was but wasn’t monitoring yesterday’s intake very closely. Two to three quarts of water per day are what I’m reading in the various drug information sheets I am currently ingesting or infusing. Acetaminophen is recommended by the drug information and Sara. 

Speaking of drug information, I need to print out information about a couple drugs I take everyday and reorder a couple for next week’s AM/PM distribution in my weekly pill box. 

Until my next entry thanks for reading. 

April 19 to April 24, 2020 Still thinking' 'bout Lymphoma and more

April 19, 2020

I'm back after what seems like eons of total exaggerated internal wars regarding will or won't I sit and write, self-blocking issues. Many bird walks in my mind, b'sing with the neighbor, which gets me to today's experience, so far, 'cuz during the b'sing as I was attempting to describe how my body was reacting to Levofloxin. I couldn't think of a descriptive word to describe how I was feeling. I did a little wavy dance to illustrate my condition. And my neighbor said, "Rubbery." Bingo, on the mark.

April 21, 2020

Although I really appreciated my neighbor's acumen my brain kept on looking for an additional descriptor and just before bed last night my brain suggested ‘wobbly,’ which fits well with ‘rubbery.’ Together they describe my state of muscle control rather well. I don’t like it. Definitely having a control issue(s), meaning who’s in control me or the drug? Me says me. The drug seems to be prevailing. Rats!! Getting up, walking somewhere, have their challenges now. “Oh, we’re going over here now?” The middle of the road to the side in 3 rubbery, wobbly, steps. We be staggering now. And so, go the walks I’ve taken, unless it’s a walk down to the river with Lizzie, then its mini steps down the 10% gradient road and twice (do I hear 3 times) as many to get back up the road. I rest after these efforts.

April 23, 2020

I had written a whole different paragraph previously but then, I did some grandly unconscious maneuver causing the whole document to disappear into the ether. I was also experimenting with a new word processor, MS Word, at the time, and was still learning the state of word processors today versus yesterday when I made the doc disappear. 

Ringmaster/announcer

“And, Ladies and Gentlemen what has the gentleman participant won?” 

(a pause while the ringmaster pulls the prize from the magic hat.)

Ringmaster/announcer

“Ladies and gentlemen our most recent player has won another pain in the ass search of his hard drive for a missing document! Congratulations to you, sir.” 

(The prize is passed to the Gentlemen/Participant)

Ringmaster/announcer

From the bottom of my heart sir, I most sincerely believe, and, our viewers too, are behind you all the way, I wish only the best outcome for you and your missing document. 

Gentlemen/Participant

Oh, thank you so much. I’m feeling appreciated and oh so much better. Wow a ‘get a second chance’ prize. Thank you, thank you, you’re too kind. I even have permission to not even try to remember what the initial paragraph content was. How thoughtful.

And here I am creating a something now which, has nothing to do with the purported initial start at today’s entry. Purported? You have not seen the first entry attempt and won’t be.

OK, so let’s talk about lymphoma. Today is Thursday. I had Cycle 2, Day 8, treatment Tuesday.  It was a real wham, bam, thank you, ma’am. And off to Portland to meet with an OHSU Oncology STEM cell doctor. The OHSU program are the Kaiser provider/contractor for STEM cell services. We drove straight to the Kaiser Interstate South building where I thought I would be meeting with the doctor face to face. Check in provided the coup de grace across the chops. It’s a phone interview. I use the calendar Kaiser to sync with my calendars. A detail specifying it was a phone interview was left out of the Kaiser web calendar. Got back in the car and headed home. Dameon is doing all the driving this day. On the way home I remember having a hankering for a nice steak. I called ahead to the Markum Inn and ordered two steak dinners. Markum Inn only had one 8-ounce sirloin left. I said we’d take the one and call it two when I cut off what I think I could consume at home. Really hit the spot, a great cut cooked to my liking and just melted in my mouth. Real mashed potatoes, au jus and fresh greens salad with homemade dressing. Back at the beginning of this day’s events I mentioned the speed at which I proceeded thru my infusion. The day started rough. I threw up, or rather, experienced the dry eh3eaves. The dry heaves is how I started the day. The foregoing experience was my first throwing up other than forcing a cup of strong black coffee down my gullet one morning.  Anyway, the day started with a challenge. I was real late getting ready (slow moving) for my infusion appointment. I was, in fact, late arriving for my pre-assigned time. I had prevaricated taking my Levofloxin this morning and ended up not taking it and another OTC they would like me to take before infusion. When I mentioned I had not taken my Levofloxin my Oncology RN suggested take it this evening. The RN’s suggestion fit with my thinking as to when I would prefer to take Levofloxin. I have shared previously how I dislike the side effects of the drug. To mitigate awake time side effects, I wondered to myself if taking the drug in the evening instead of the morning would make al difference. 

April 24,2020

Subjectively speaking, switching to evening ingesting of the Levofloxin does seem to have mitigated the unwanted side effects. I still experience rubbery, wobbliness, but not to the degree experienced earlier. Neuropathy in the fingertips comes and goes. Some days the thumb, index finger and middle finger are all equally tingly. Another day, only the 3 digits on the right hand were tingly. The left felt quite normal. Do I even know what normal is these days? Another day, both hands are tingly at the thumbs, only. My Oncology doctor has suggested I use a vitamin E derivative, Alpha Lipoic Acid, to help combat the neuropathy. The OTC prescription was to take 600 mgs 3 times per day. I had previously set up my Lymphoma medication with one of the AM and PM pill organizers. Setting up a third time to take a pill in my head seemed a stretch for my cancer brain. Having worked with the twice a day for a few weeks I think I need to add the third pill. I’m thinking the extra 600mgs will produce, hopefully, consistent improvement in the fingertips. I have even figured out when I will take it. Just before bed.  

My overall sense of self is a general feeling of lassitude, especially in the mornings. Sleep has improved. No mid-sleep urinary relief efforts required the last few nights. I stay in bed in the mornings either to sleep more or just lay there in my blanket womb. Eventually even the deep, abiding comfort of the blanket womb cannot overcome the ache of laying on the same body part for way too long. I must get up. I move myself to my second home, my recliner. Then begins, what seems like a long process, especially the last few days, of my body waking up and a full state of consciousness is achieved. Usually requires at least an hour of reding the news, drinking water, taking the morning meds and drinking a cup of coffee. Sometimes it has been a 2-hour process. Mentioned earlier this week and recorded above, Tuesday was a challenge, not only was I dealing with morning nausea for the first time, I had to get dressed for medical appointments and I was being real passive aggressive with myself. Move ever so slowly, only think about various activities half-way, and forget to do some activities because they have expectations attached. The lassitude can carry over to the next day. My cycling experience has led me to plan for a recovery day after hard exertions. Tuesday was a hard exertion so Wednesday became a rest day. The recliner was full of me most of the day. I don’t believe I went for a walk outside. Thursday, I walked to the mailbox, down to the river and back, and down the lane to see if a for sale sign has popped up at recently vacated home. Today, after a more normal wake-up (only an hour required) Lizzie and I walked to the mailbox, then with Dameon in the truck to the post office and home. And here I am finishing this blog entry started several days ago and folded into one longish entry. Successive blog entries may be shorter and more timely (we’ll see).  

  

FEELIN' OKAY SO NOT THINKIN' ABOUT LYMPHOMA MUCH (REALLY)

Friday, April 17, 2020

I'm pushing myself to write in my blog more frequently. Part of my writing splurge is the desire to share my Lymphoma experience and the recent spate of entries may have been fueled by steroids. One of the reasons I chose to move my experience is to share more freely the specific drugs I may be taking, reacting to the drugs, as well as my general state of being. Another reason is I don't trust Facebook to stop selling my/our info to my/our enemies and thieves.

Those of you who may have linked to my blog earlier may notice I have pulled a couple postings about impermanence. They need some work.

7:30 PM

Finishing up today's post as to how the day has gone so far. Waking up, more specifically getting out of bed, I felt a slight tug in the left stomach area, which led me to believe I have an exact location of where the B cell is hiding out. My left side and near the lower end of the rib-resection surgery where it is still numb to the touch. There was resistance to taking a deep breath, but I laid in bed taking slow deep breaths to break through the resistance and I did. The resistance was very mild, minimal. Since then breathing hasn't been an issue.  Sleep quality was questionable. The dexamethasone, steroid, really effects sleep start. Last night I went to bed around midnight, but it may have been another 2 hours, or more, before I actually attempted sleep. Groggy this morning, but I took my steroids relatively early(11 AM, which is probably not early to some folks), which requires something in the stomach, so a half bagel preceded the ingestion of my steroids. Slowly, but surely, the steroids kicked in. A second drug I am concerned about is levofloxacin. Some of the side effects are tendon pain, nerve problems, peripheral neuropathy (I have mild tingling in my thumb tip, in my index finger tip, and mild tingling in my middle finger tip) sleep issues, and definite muscle instability not preventing walking, but a definitely mild unstableness. The muscle instability not comfortable to experience, psychologically.  I did take a walk with Lizzie down to the river. Went slow down the hill and even slower going back up the hill. I haven't done much exercise since then due to my sense of instability. Yesterday, Dameon and I walked to the mail box and then back past my home into the forest at the end of the lane almost to its end, then back home. Approximately a mile round trip. Most walking or any exercise I have done in a while. Perhaps today was my body telling me I needed a rest day.  I have wound the cranky meter up a few times. Most of the crankiness was cursing under my breath. I take the Levofloxacin every day in the morning. I took my last dexamethasone dosage, 40 mg/dose(8-5 mg pills per dosage), this morning. Sleep aid and sleepy time tea with Ganja butter to combat the sleep issues.  No real pain issues throughout the day.

Next chemo session is this coming Tuesday, 4/10, Day 8, in Cycle 2, and no steroids before and after, yay.  Two days later, 4/10, I inject myself with Zarxio to combat neutropenia, low white blood cell count. Neutropenia has not been much of an issue for me throughout treatment. During the chemo cycles white blood cell production predictively decreases around day 10 of the 21 day treatment cycle, so the Zarxio is injected, by me, to promote white blood cell growth in order to fight off infection.

Until next time, PEACE OUT.









 

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.