Long Time No Word from Me

 August 30, 2020

To those of you who have been trying to keep up with me regarding my Non-Hodgkin’s Lymphoma challenge I issue an apology. If you recall my last entry, I wrote about the monitoring of my CAR T transfusion by my OHSU doctors. The first 30 days ended August 7, and I was scheduled to meet with my Oncologist on the 12th to discuss how the CAR T was working based on what a CT scan revealed. Due to a Kaiser and OHSU contract conflict that meeting and scan had to be rescheduled. I received a CT scan Tuesday, August 25, and met with my Oncologist, August 27.

The results of the CT scan revealed no change for the stomach mass where the B cell(s), which is the aggressive form of Non-Hodgkin’s Lymphoma, and a couple new nodules on my liver. This was not good news. My oncologist shared they cannot tell if the T cells are gone or just sluggish meaning they haven't started working yet or the B cell mass is effectively hiding. 

My oncologist suggested several treatment options most involved chemotherapy. We decided a biopsy was the next best step. My oncologist said he needed to consult with my Kaiser oncologist to see what can be worked out.

So, I am in waiting mode awaiting word from Kaiser.

I feel good. Energy levels are improving. I am dealing with neuropathy in my toes and water retention in my ankles(cankles). 

Waiting is.

 

RED, WHITE AND BLUE

What we won’t do for science. What that means to me is participating in cutting edge medical technology to cure a disease I currently have. There are risks with being on the cutting edge. My risks are several with two being of utmost concern: cytokine release syndrome (CRS) and neurotoxicity. CRS is the result of fever spikes with 100.4 degrees being the indicator of something going on above and beyond the CAR-T therapy. Day 0, the day I received my ‘reprogrammed’ T cells back, was July 6, Day 1, July 7 and Day 2, July 8. I was seen by a physician on Days 1 and 2. During the evening of Day 2, after 9 PM, my fever began to spike. I was having chills and climbed into bed hoping to drop the temperature and then recalled I needed to know what my temperature was, so I took it. 101.4 degrees was what the thermometer said. I couldn’t recall what the temperature cutoff was and went looking for it amongst all the literature I have accumulated in regards to this cutting-edge medical technology. I vaguely recalled there was a script I must recite to the answering triage nurse. All I could find was the phone number for OHSU Emergency department. I identified myself as an oncology patient and my last temp reading of 101.4. Dameon drove me to the emergency room. I was admitted. Kept in emergency room till the next morning when a room was cleared for me on the floor for cancer patients. 

The night in emergency was pretty uncomfortable. The bed was all mechanical, meaning no hydraulics or electronics to adjust the bed. Crank it up or crank it down. The mattress was very old and thin. I felt every crossbar under the mattress. My supposition was the bed was pulled out of storage when Covid patients required all the newer stuff for their treatment. 

I got breakfast, strawberry yogurt, fresh strawberries and fresh blueberries. My hospital physicians promised me a different bed which I got. By then a room had been prepped for me and a CNA delivered me to the room. Shortly after arriving I realized I was going to need an emesis bag. The RN realized they had none in the room and stepped out to get some. I realized I couldn’t wait and stepped into my bathroom and proceeded to unload breakfast. Yes, red, white and blue all over the nice clean toilet. After cleaning up the bathroom the RN asked what I had that was so red since there had been more strawberries than the yogurt and blueberries. 

Later the same day when coming in to check on me and asking how I was feeling I could not reply. I had lost my voice.

The next morning, I had a group call with several of my old high school classmates and I did not want to miss the call. As I was getting my iPad adjusted on my lap one of my classmates commented on my double chin. Yes, I have a double chin so what was the use in commenting back or denying the reality of a double chin. After our call had concluded and I was finishing up some bathroom duties I looked in the mirror and saw I had turkey neck or turkey doppelgangers. Two lymph nodes had swollen to golf ball size, which I believe is what my classmate had seen. One on each side of my Adam’s apple. I could gobble and shake my head back and forth and wallah turkey neck. Gobbling was difficult yet, but not shaking the head.

Sometime on Sunday, I received a medication, Tociluzimab, a medicine blocking inflamed proteins and my fever spikes stopped. Since other causes of inflammation were eliminated, they felt pretty comfortable stating my fever spikes were due to CRS. I spent Monday night and Tuesday night in the hospital to make sure and released Tuesday.

I have had no further fever issues. I have been feeling OK, energy levels low, doing more sleeping and napping.

I am writing this on Day 16. My schedule with my doctors is now once very 3 days and tomorrow, Sunday, Day 17, (7/26/2020), is the next day to see a doctor. 

Day 30 is 8/7/2020, and at that time my first CT scan since before CAR T started will occur. This upcoming scan will be very telling. Cross our collective fingers and keep those prayers coming.

I can still feel the lump but doesn’t seem to be as painful, lately.

7-2 thru 7-4-2020 CAR T transplant begins

July 2, 2020, Sitting in my room at the Hyatt House

I have transitioned to Portland and a hotel room near OHSU’s Knight Cancer Center all arranged by OHSU. An oncology social worker contacted me back in May about housing to keep me close to OHSU after the CAR T transplant. I had to meet low income requirements and home distance to OHSU to qualify for a kind of grant program. I qualified although distance was right on the border line of being too close. My estimate is I'm 75 miles from OHSU and the funding agency prefers 100 miles, but the OHSU social worker was persuasive. It is my intent to keep these blog entries reflective of the CAR T process and how frequently the doctors want to see me to determine how I'm doing.

Today’s activity was all about getting me ready for my 4^th of July weekend and next Wednesday. Starting tomorrow, July 3, begins a 3-day course of chemo. Short days, two bags, 30 minute each, of a specific cancer drug, Fludarabine and Cyclophosphamide. The chemo drugs are administered back to back. There are labs and checkups before. There is hydration before. There will be a hydration period after the last chemo drug to flush the body out. Then providing there are no reactions needing attention I am through for the day. Saturday will be the same. Sunday starts in the afternoon with the same routine before, but after there may be a third drug administered. I can’t find it, the third drug, in today’s paperwork, so I am flying blind with my guess work. Then two days off, rest, and Wednesday, July 8, I get my overhauled T cells back and welcome a few new T cells (clones I’ll bet) in 10 to 30 minutes of time. Then it really starts. July 8 is Day 0 and 7/9 is day 1 and so on.

July 4, 2020

I have finished my second day of chemo. I had a problem connecting my laptop to the Hyatt House Wi-Fi, but Dameon has solved my connection issue, which now allows me to update on a timelier basis. Today was quicker than yesterday. Friday’s chemo session ended around noon. Today it was 11:30. As speculated above everything is progressing according to the plan. I am not experiencing any discomfort from the chemo drugs (yet). I think the only discomfort will be a loss of hair, again, which is not a pain issue, just a self-esteem issue. 

One issue popping up during yesterday's infusion was my PICC line and during today's infusion it was a topic of discussion. The line into my body has a tendency to pull out during redressing the bandage covering. This is not uncommon for a PICC line. There are marks on the tubing line every centimeter. When first inserted there were only 4.5 centimeters of tubing showing before the tube disappears into my body. Now 8.5 centimeters are showing. Four centimeters have pulled out in the 6 months of living with the PICC line. It only pulls out during the changing of the covering not during daily living activities. The bandage holds everything in place. Way back when it was first noticed the tubing was beginning to pull out I had an X-ray done. The radiologist warned if it reaches 9 then its replacement time. As you can see I have a half centimeter to go. The upshot is during my two rest days I must get an X-ray to see if current placement of the tubing end next to my heart is acceptable. If not then I get a new PICC line. I found the initial PICC line installation to be very easy and unobtrusive. Which does not explain my anxiety regarding the installation of a new PICC line. This issue will get more attention in subsequent blog entries.

Monday, June 22, Catching Up

Today is Monday, June 22. You last heard from me May 26, almost a month has elapsed since I last reported on my condition. I am now dropping in to say what condition my condition is in. Currently feeling ok per my use of a song lyric from my youth. Some of my readers are wondering how Apheresis went and what actually happened. 

The day, June 2, started early (for me) and ended late, which is not unusual (for me). I had to report early for a surgical procedure where an inline catheter was placed. One end entered my body near the right collar bone and the other end, a special tube, about the diameter of surgical tubing, but much stiffer with perforations strategically placed, ending near my heart. I experienced no discomfort from the procedure and afterwards. Once I was cleared, I was wheeled off to the Apheresis unit. I was attached to a centrifuge via my inline catheter and blood was withdrawn to have the T cells withdrawn and everything else returned to me. My rudimentary understanding is the catheter and tubing allow for blood to flow in both directions at the same time. I was hooked up to the centrifuge for 5.5 hours. I wasn’t interested in daytime tv. I did not bring a charger for my phone, so I did not have a source of diversion to occupy myself. It was boring except for chatting with my primary care giver. I was given discharge instructions and off I went into the evening. Somewhere during our maneuvers to exit the main OHSU campus, Marquam Hill, I received a call from my OHSU MSW, who was the point person on the Apheresis process. The MSW said all the T cells harvested were acceptable so there would be no need for me to come back tomorrow for a second session in the Apheresis lab. Oh Yay, says I. What this meant to me more immediately is I would not have to spend a night with the catheter in place. It also meant we had to go to the lower campus to have a nurse remove the catheter. We made it and there was no long wait. Turned out the charge nurse new where Mehama was. Grew up further upstream from me and went to school in Gates/Mill City. Dameon and I returned to our overnight abode around 8:30. 

The next morning, I had to be at Sunnyside Hospital for an 11 AM pulmonary test. Part of the pre-tests for the CAR T therapy. And that afternoon back in Salem for my first radiation treatment. I had a preliminary talk with the Radiation Oncologist supervising my brief spate of radiation while waiting for the return of my T cells, June 1. This included my target areas being determined and marked with little tiny tattoo dots by special technicians. I walked into the waiting area and shortly after the radiation techs came and escorted me back to the radiation machine.  What a piece of modern technology, and not by any stretch of the imagination like a normal cat scan machine. This machine unpacks several arms each with a different device on the end. These arms would rotate around me at the direction of the technicians who were monitoring me via computers. In and out of radiation treatment in less than 15 minutes and on my way home a few minutes later. Wow, impressive!! That was Wednesday and Thursday.

Friday I was awakened by a pain in my chest. I dressed myself as always then went and collapsed in my lounge chair and waited to see if the pain would abate, which it didn’t. I called an OHSU triage nurse and went over the symptoms with the nurse, who consulted with my OHSU oncologist. It was determined I needed to go to emergency. Dameon drove me in. Checked myself in and then waited before getting escorted to a room for a vitals check then back out to the waiting room and waited. Eventually they got me into an intermediary room while I waited for a CAT scan of my chest. During this wait I became hungry but was told I could not eat until after the CAT scan and even after the CAT scan I had to wait for a doctor to read and interpret the scan results before I could eat. A Kaiser Hospitalist came to me with the results of the CAT scan. I had blood clots, but not a pulmonary embolism (PE), which was good news for the doctor meaning I dodged a bullet. The solution was an overnight stay for observation and a ton of Lovenox syringes. Lovenox is a blood thinner, but of the new variety which inhibits further growth of current blood clots and stops future development of blood clots (because my blood is thin?). When the Lovenox solution was presented to me there was an implication this could be a lifetime thing(?). I’m not interested in jabbing myself twice a day in my stomach flab for the rest of my life. I’ll do it for now. I was discharged Saturday morning and by Sunday morning was feeling reasonably well. No chest pain, and still aware of a lump on my stomach. 

The following week, June 8 through June 12, was attending my radiation treatments in the afternoon and hanging out at home. The following week was much the same except Friday, June 19, was my last day of radiation. It looked like the next week, today through June 26, was going to be very laid back, but Saturday, June 20, the RN who is my oncology doctor’s primary assistant called to check in and give me an outline of what the future was looking like. Around the end of the month things will start heating up for me and CAR T transplant. The RN said as soon as all the dates were locked in, she would send me copy of the calendar. So, my 4^th of July may be very different for me. I will keep you posted.

I MUST BE ON A HILL BECAUSE IT APPEARS ALL DOWNHILL FROM MY PERSPECTIVE 05/16/2020 thru 5/26

I am actually writing this on the 24^th. The week of 5/16 through 5/22 was chock full of appointments in Salem and Portland.

Monday, I was scheduled for an EGD in Portland. The appointment was set for 1 PM. I had breakfast at 11 AM and shortly after we were off to Portland. As we approached the outskirts of Portland my memory cells started working again and I recalled my last EGD in January. That memory helped me remember I had been on a fasting order from Midnight to 5:30 PM the next evening. All of which made me realized I had screwed up and broke my fast which would postpone my EGD. I shared with the nurse my predicament. She checked with the doctor who canceled the EGD. Staff then went to work finding me a spot in the schedule ASAP. They found one for Tuesday, early afternoon the next day, and I was in the clear as long as I remembered the fasting expectation.

Tuesday morning, I had a brain MRI in Salem. Then Dameon and I were off to Portland for my EGD. 

Wednesday, I had a Fluoroscopy scheduled in Salem. I had to look the word up and found a definition indicating it was a way of X-rays to take motion pictures. I got into the fluoroscopy room, and while I was engaged in a pleasant conversation with the tech person I saw on a screen or a piece of paper, I saw the phrase, Lumbar Puncture. I had my gasps, mostly internal, before I recalled the conversation with my OHSU oncology doctor who said they would need to look at my spinal fluid for signs of cancer. I settled in for the puncture process. I was on the table for approximately an hour. Several punctures later the doctor was yet to see my body giving up any fluid. The puncture process was ended without any fluid. It was determined I may need to come back for a second try. The thought of going through what I had just experienced was one I wanted to avoid at all costs. We went home. I applied ice and heat throughout the evening. 

Thursday, it was back to Portland for afternoon appointments, with the Aphersis nurse who examined my veins to see where they would be extracting my T cells, a blood draw, and a conversation with my OHSU oncologist. The conversation with my oncologist started with an uplifting note. The doctor had already heard about the lumbar puncture. If the brain MRI showed no abnormalities, then there would be no need for a lumbar puncture. During this conversation the oncologist presented the reason for moving the T cell extraction back one week to June 2. It was important the chemo drugs from my Cycle 3, day 1 and day 8 were completely gone from my system. The nurse practioner (NP) had been monitoring email notifications during the conversation and at one point got up and went to the computer. After looking at the message turned to the oncologist with a wry smile. The oncologist couldn’t help but noticed she seemed pleased with what she had read. The oncologist read the message and relayed to me the MRI report noted there were no abnormalities in the scan and therefore I would not need a follow up lumbar puncture. YAYYYYYY!!! To those of you reading this if you are scheduled for a lumbar puncture be well hydrated, exceedingly so. I was not. 

Friday, no appointments, but several phone calls from MSWs, OHSU and Kaiser, and a person calling to schedule a needle biopsy for my stomach B cell. Tuesday’s EGD led the doctor to assert the B cell was on the exterior of the stomach and thus a biopsy from the stomach interior was not possible. The appointment date offered was June 3 which to my way of thinking was a day late and a dollar short. I referred the person back to the source of the referral for clarification. Later Friday, I began to experience an intense headache, actually a neckache. I was able to sleep during the night. 

Saturday, I awoke without any sign of discomfort other than some mild nausea. Maybe a couple hours after arising the headache returned and this time the discomfort was behind the eyes. I chose to lay down on my bed. I, apparently, fell asleep as I was awakened by a phone call from Dameon. The discomfort was gone and did not return the rest of the day. I attributed the headache/neckache to the lumbar puncture, but who knows? Energy level was minimal and as a result I didn’t go for any walks. Standing on my front porch was the extent of my outdoor activity.

Sunday, a day of rest. A couple of walks with Lizzie.

Monday, I was brought back to reality, so to speak. My sister-in-law wondered what time we would be arriving. She had not been informed in the change of dates until I responded to her email stating the date had been moved. The good news for me was I still had a place to stay on June 1. I had complained about my memory during past visits to the infusion nurses and had gotten a response “cancer brain.” Chemo drugs can cause confusion. An excuse to be avoided and yet a very real issue. My thinking had settled into Memorial Day weekend, but not associating the weekend with any specific dates. When May 26 had been chosen as the original date for Aphersis I did not associate the date with Memorial Weekend. I assumed I had another week, which is true now but wasn’t last Thursday when the reasons were provided for the change in date. It took me until last night just before going to bed for the light to go off in my brain and I could see how I screwed up. Until that moment, which was set off by a date I glimpsed before going to bed, I was still holding the weekend and the current dates as two separate items in my head. Talk about a day late and a dollar short!

Tuesday, May 26, I am catching my blog up. I feel OK. Energy level is up. No current discomfort whether in my head or my abdomen. So far, no appointments this week. It could be a complete week of rest. I may not be adding any blog entries if the week remains appointment free. I would like to catch you up after the Aphersis appointment, June 2.

Until the next time, Peace Be With You.

TREATMENT TRANSITIONS AND OTHER ITEMS, 5-06 to 05-12-2020

05-06-2020, Thinkin’ ‘bout Lymphoma(still); money remarks; Covid 19 and stem cell transplant (starts tomorrow)

Yesterday, Tuesday, May 5, I completed Cycle 3, Day 1. Tomorrow I travel to Oregon Health Sciences University to begin the preliminary stuff for the stem cell transplant. I predict the stem cell schedule will hold pretty much to the treatment cycle I’m on with Kaiser. So, if nothing changes date wise should expect to be at OHSU Tuesday, May 26, for, up to, two weeks, which is when they infuse the drugs to kill the malignant cells and put in my good cells. Vacuuming out my stem cells will happen before Then I am sent home and for the next 30 days, monitored for any significant reactions, such as, vomiting, diarrhea, and temperature. If I need all the preceding time to accept the transplant, I will be looking at 45 days more of treatment.

Yesterday’s infusion went well. It took longer due to my RN having to make a couple consults with higher ups.

05-09-2020

Thursday, I went to OHSU to begin the preliminaries for a stem cell transplant. Navigating the complex was my big challenge. I had two appointments with 30 minutes between them. The first was up on the hill in the Hatfield building then down to the waterside for the big meet in the Knight Cancer treatment complex. I became distracted on my way up to my first appointment’s floor and got off when a fellow passenger got off the elevator. 

Proper distancing was practiced or at least as much as an elevator with two people in it will allow on the diagonal. 

Anyway, I was on the wrong floor. I walked into one area and was immediately asked if I needed help. An RN escorted me to the correct elevator and floor I needed to go to(return to) and go back up to the floor I needed to be on. I made it but, not on time. I’m not sure if this appointment simply was an assessment as to where transfusion should occur, or they were looking to install a line. Now that I think about it, installing a line, like my PICC line in my right upper bicep, requires a sterile setting and some time. Someone may be overthinking it a bit. The nurse assessing me called out to another nurse at a computer, “We’ll put a port line in on his left side.” The nurse at the computer acknowledged receipt and subsequent entry. An appointment has to be made. This is where I would undergo transfusion. T-cells out, sent out to be cleaned by Norvartis, frozen at Norvartis, then brought back to be infused into my system when ready. Oh yes, did I mention Norvartis has a role in this transplant. Just so you know Novartis is involved. Novartis. And so, I am pretty sure after so much emphasis Norvartis is part of the process.  

05-10-2020

Saturday and Sunday were days of fatigue. Whole lot of sitting and sleeping, cat napping.

05-12-2020

Cycle 3, Day 2, I woke up around 3:30 this morning to pee. I completed my obligation then headed back to bed. As I was laying there waiting to fall asleep, I noticed a rather uncomfortable sensation in my stomach. ‘What is that,’ I thought to myself. Wow do I have to throw up? Ah yep. Dry heaves. 4 or 5 heaves, big sloppy runny nose, alligator tears and I was through. Made it back to bed and chose to lay on my left side, which proved quite unremarkable given my past history with the left side. I fell asleep and was awakened by my 7 AM alarm. I felt like shit. I did not want to get out of bed. I did not want to go get a blood draw in preparation for today’s infusion, I did not want to go to my chemotherapy, I did not want to Sam I Yam. So, I laid there until Dameon rousted me out of bed. The stomach was nauseous. After 5 minutes of sitting in my lounge chair/throne, it was pretty apparent I wasn’t through with the dry heaves. Another bout of 4 or 5 heaves with the same extra-curriculars as earlier on the side and I was pretty wasted. Dameon had prepared a cup of coffee and a glass of water to ease my stomach’s transition. I knew a cup of black coffee would not do well in my sensitive stomach. I asked Dameon to blend some ganja butter into the cuppa. He did so and I experienced the delight of a hot beverage offering me comfort. The ganja butter offers two benefits off the top to me. One, ganja has anti-nausea properties, and two, it stimulates the appetite. The nausea abated and I was able to shower before hopping into the pickup to start the day’s adventure in Salem. 

First stop was a blood draw. By the time I was finished with the blood draw my appetited was robust. The problem is chemo has an effect on my taste. I experience some sort of coating but isn’t a coating. The taste of food is masked. Masked in such a way it appeals to me as uninteresting. I think about a food and the coating comes to mind and obscures(may not be the right word) the taste. Best way to express this phenomenon is food has no appeal, the thought of a particular food item can leave me flat, no desire. Thus, if I’m hungry I now run a menu thru my head to see if something jumps out to my senses. 

This morning, after my blood draw, I fixated on a pancake with one fried egg, over medium, please. I was in the pickup ready to eat and then I remembered this is he time of Covid. Order by phone and pickup. We did so. Ate in the pickup.  

There is an expression used by the patients and caregivers called ‘chemo brain.’ I bring it up now as it has many manifestations. Alertness is a challenge. Not tracking my behavior very well, meaning how I am operating the unit named Dennis is becoming real interesting. I managed to dribble syrup over my clean shirt, later spilled a part of a latte on self and car seat. I find these

Instances frustrating even though others may find them minor in their impact. Another aspect of chemo brain is thinking, conversing, logically, coherently. I’m falling way short there. 

An example of chemo brain: On the way home after running a couple more errands I received a phone call, which, turned out to be my oncologist. The phone call was to inform me I had been approved by Kaiser to continue on with the OHSU stem cell treatment. The process is interesting to my eye. My oncologist notices the chemo treatment is not 100%, so, writes up a referral and presents the proposal/referral to the tumor board. The tumor board is a meeting of all the Kaiser oncologists once al week or every other week, not sure. Cases are presented for feedback and suggestion, I imagine. My case was presented as a viable stem cell transplant. The tumor board approved this first step, to refer the case to OHSU and see if they are interested and if I’m a good candidate for success. I interviewed with the DO who will be my case physician. The DO thought I was a good candidate and said the next step was to get Kaiser’s approval(not the tumor board) before moving forward. Kaiser’s approval had to do with who pays. Kaiser said they would. I’m in the program and now awaiting the next schedule of tests, and meetings.  

But wait, this was supposed to be about chemo brain thinking. Back on track. I had a question about timing as did Dameon and started in to ask my question and then lost my point, and the subject. The good news for me is I hung in there and finally remembered my question was about timing. When they take my healthy T-cells will I begin my approximately 30 days of close observation? My chemo brain kicked in around ‘approximately.’ I gasped and hee-hawed and made other exclamations of frustration. And, I persevered and was able to pull the missing piece of the question out of my chemo loaded brain and get some clarity, both for myself and Dameon who knows the 30 days of close observation may be highly dependent on him. Unless we can get him help. All things will be revealed as the process rolls along. Dameon had one very interesting question at the end. He wanted to know how clean would our house have to be to pass inspection(Dameon, I would imagine) for a very immunosuppressed individual(me after T-cell vacuuming) to live in said house. Three bachelor Engbloms, what the hell do you think it’s gonna look like, huh? Rough and ready, baby, rough and ready.

Thank you for reading and until next time peace be with you.

And not a single word or comment about money and how Covid intersects the conversation. For some other time.

April 29, 2020

Right now, I feel okay. The left side, the left arm of the ‘U,’ stills generates a presence, a large lump expressing itself. Pain discomfort is currently minimal. I like that. 

May 1, 2020

Yesterday was scan day. An Echo cardiogram in the AM at a Salem clinic and a PET scan in the afternoon in Portland. They were scheduled on the same day on purpose. I guessed the Echo would take not more than an hour based on previous experience. I was in a little after 11 and back in the pickup by 11:30. The PET was scheduled for 2 PM. I arrived at 12:30, checked in, sat down ready to spend the next hour and a half with my nose in my phone, but a minute or 2 later a nurse came out and called my name. I was all done with the PET by 3, an hour earlier than originally planned. Dameon had scored food for us while waiting for me with a friend. Beans and rice with guac.  I ate it all. I don’t always clean my plate nowadays. Oh yeah, a little detail. The PET required water only after 8 AM per the original appointment instructions. I’d only had one cup of black coffee prior to 8, but the nurse needed to check with someone to determine if a cup of coffee would affect the PET. I was an hour and half early, remember? A determination was made the coffee would not be an issue. Dameon bought the bowl at Whole Bowl(?) food truck. By writing the business name here I may be anchoring it in my brain for next time. Nectar is another business name to anchor in my brain for hunger reasons. 

The 4/29 entry is so short because I was very good at being distracted by other ‘important’ things, like money (as a symbol) and stem cell treatment. Money? I realized at some point in my life the pursuit of wealth wasn’t a goal for me. I cannot name a moment in my life when I revalued the concept of money. I agree with those who say money is only a concept (you can’t eat a dollar bill as your only food source and live!!) and it has become so intertwined in our lives people would sacrifice other humans to gain wealth. To me, at this present time, money signifies an exchange between humans. It is naming the exchange and saying we all do this (the exchange) and boiling it down to its essence. And I’m slamming on the brakes with this monetary distraction as it is huge, abstract, and yet, my question remains how do we name the simplification money really isn’t? Every exchange is equal. No one is more equal than another. We are experiencing, right now, what it is like when the drive for money is depressurized. How do you describe no pressure for money if the need for money is not there, at all? I shall discuss this more as I have breached it now several blogs worth of time.

Stem cell treatment is on the horizon (future, hint, hint), I mean like a week from yesterday the actual tests they, OHSU, do the Kaiser oncologists haven’t already done will begin. Next Thursday will begin a number of trips to Portland. Heck, Dameon and I even did a rehearsal drive, so yesterday’s trip was pretty easy. I believe I even took a cat nap while riding along. 

The idea of stem cell treatment seemed to come out of the blue. Perhaps the idea had been previously communicated, but if so, it went right by me. It hit me in the car after a chemo or infusion treatment session when the Kaiser Liaison Nurse Practioner called me and told me stem cell treatment had been recommended by my oncologist. He was under the impression I had been previously informed. He proceeded to scare the shit out of me and thank God the sphincter muscles were working during that conversation. The idea of only feeling pain from my bones scares me, bone deep pain. I do not seek that kind of pain in my life. And the thought I will experience that kind of pain for TWO weeks is scary.  My fear stems from what I heard the NP describing to me and I believe his training says no tricks, straight talk, you are about to experience the following process which can be intense. I want the reader to be clear I am relating only my perception as to what I thought I was hearing. Fear can be distracting, ya know? There will be bone marrow tests, there will be a vacuuming of healthy stem cells from my bone marrow. Those cells will be frozen until needed later (oh, my god, how much later?!?). Then the next, up to two weeks, of a chemical wash of all the remaining bone marrow, 'cause that is the kind of chemicals they use at this stage, says me mucho sarcastically. Doctor, doctor, I got no bone marrow. What am I gonna do?  

Kind of stopped me for a moment searching for the appropriate transitional word or phrase and decided this one works fine. 

Remember the frozen stem cells? They get warmed back up and are infused back into my body. Then begins the thirty days of waiting. Ideally, they, OHSU, want me within one hour’s drive from them if my fever spikes. A week ago, Tuesday, I had a scheduled conversation with an actual OHSU doc. The doctor went over the procedure again with the timelines being shorter the only real difference than what I had first heard. Less than 2 weeks in the hospital and not that long a wait for the replacement cells to do their thing. I asked what are the odds the transplant takes. 50/50 is what the doctor said.  The process I go through and the fact they want to proceed indicates to them and me, I am a candidate who will succeed. Upfront the doctor said their stats look good because they carefully choose people who present as able to come out the other end of the transplant process successfully. The other end of this process is very intriguing. All the ‘bad’ cells have been removed and replaced with healthy, ‘good,’ cells. In some respects, I will be rebuilt on the inside. The other side looks very intriguing, indeed.

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.

CAN’T SLEEP, THINKIN’ ‘BOUT LYMPHOMA

written March 29, and posted to Face Book.

I started my new chemo regimen Monday, March 23. The only issue for me was forgetting to pick up a prescription the week before when at an Oncology appointment. May have delayed my start about 30 minutes. Monday was supposed to be a long day and it was, 8:15 start. I left around 4. No reactions to the biological as I had been tolerating it quite well when at Kaiser Sunnyside. A second drug was administered on Monday also. I had been cautioned the 2nd drug could be a problem, but it wasn’t. A good start to a new regimen.

I get to take a different steroid with this new regimen. It’s function is fight nausea, stimulate appetite, and provide energy stimulus. Nausea has not been a problem. There have been times when food wasn’t interesting to me although my stomach was rumbling, so it forced me to do something, i.e. eat. What has been really interesting is the stimulus aspect to this steroid. I have a tendency to be a night-owl and thought nothing of staying up to midnight Monday. Slept in Tuesday morning, 10 AM. Took a couple walks with Lizzie. Tuesday was another late night, midnight bedtime and this doesn’t count how late I may have stayed awake reading in bed. Wednesday I was up before 10. Lizzie and I took some more walks. Wednesday eve Dameon and I played some 2 player Pinochle and listened to music until one of us won. Then we binged some television, which got us up to midnight once again. I elected to go to bed. Once in my bedroom I reached the decision to go looking for something in a bedside stand top drawer. I cannot specifically remember what I was looking for, but found some other very interesting items to occupy my attention later on. I put back the things I wanted to keep in the drawer and left the items of interest out. I looked at my iPhone for the time, 3 AM. My how time flies when you’re focused. Thursday morning I was up by 11 AM. The catch 22, if you will, is the later I sleep in the later I ingest the steroid. I was advised to ingest the steroid early in the morning, like 7. The effectiveness of the drug is rather long lasting. And I’m a little suspect afternoon caffeine may also have been a contributor. 

I am reminded of my college days when bennies and black beauties were one’s answer to procrastination regarding papers and end of term finals’ studying. At some point I would notice the tightly clenched jaw, stinky sweat and a who needs food attitude. I contrast those thoughts and feelings with today’s situation. I am not working under a deadline, so no stress there. Today I finished my Lymphoma binder. The steroid worked well to get me through to the end of the binder project. I actually started the binder yesterday and was indoors almost all day. I got fresh air standing on the front porch after letting Lizzie in and out. Today wasn’t much different exercise wise. Indoors most of the day. No stinky sweat because no stinkin’ stress. But I did eat small meals all day long. I have also been drinking lots of fluids as one of the chemo drugs is real hard on the kidneys. One of those fluids was a coffee concoction Dameon whipped up I kept forgetting to drink, so I’m thinkin’ it may have had some influence on my current state of awakefullness. 

Thursday was the last day to take the steroid so I’m hoping I can get myself back to a normal sleep pattern. One nice thing regarding the steroid use is I also take an antipsychotic medication, small dose, which does a nice job of taking the edge off. 
NO ‘ROID RAGE FOR YOU, SUCKHA!!!