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.