Week 6 - Treatment Week 1 -"Similar to a stabbing victim"

Monday, May 20, 2019

Set List: Friend of Devil, Casey Jones, Ripple, Scarlet Begonias

Day 1 of treatment. Today it’s real. I arrived about 9am. The plan is for radiation at 9:15, brief visit with radiation oncologist, then on to first chemo treatment at 10.

Today there are a different set of techs in radiation, suddenly the whole listening to the Grateful Dead plan is already in question. Thankfully, my new tech friend Joe was there and got right on it. His assisting tech said, “I don’t have Sirius, I’m on Spotify.”

I said, “I’m sure there’s a playlist for them on Spotify.”

While checking me in, Joe multi-tasked. To me, “Date of birth?” To his assistant, “Just search it in Spotify, G-R-A-T-E-F…” and voila, we have the Dead playing. The assistant even made the extra effort to make sure he had it turned up loud enough for me to hear.

I enter the treatment room and lay down. Although the clamping down to the table is still a bit stressful, I have found a little trick to the procedure. As everything tightened down around my head, I heard the techs saying what a great fit the mask is. I’m thinking, “Yeah, maybe from where you stand but try being on my side of it.” I noticed if I wiggled and shifted slightly I could find the sweet spot where I gained a little breathing room and not feel so constricted.

The tech told me today’s procedure would be a little longer than typical because the doctor will be coming in to make sure all of the alignments are correct which involves some X-raying so expect maybe 4-5 extra minutes. From the moment they locked me down I focused on the music and although I had to fight off a little anxiety, the procedure was over relatively quickly.

The sensations of the clamps being released is now one of my favorite parts of the procedure. It means I’m done for today. I say “thanks,” they say “see you tomorrow,” I move on. That’s the routine. “Next!” It’s quite an assembly line of patients they see on a daily basis.

I returned to the waiting room to be called for a consult with the doctor. A medical assistant calls me in to record vital signs and tells me the nurse and then the doctor will be in shortly. I notice it is now 9:55 and my chemo treatment is scheduled for 10. I wander out of the room and find a nurse to let her know I’m coming up against my next appointment. She makes a call and tells me to go on to chemo and I should circle back to the doctor after I’m done. Flexibility is clearly something they’re very familiar with and so far it looks to be the norm around there.

I check in at chemo and sit in a different waiting room. After about 10 minutes I’m called. “Room 5, I have two seats, pick whichever one you want.” I was told to expect a 5-6 hour process so I’m hoping I can get a “window seat.” Yup, even from my earliest memories as the youngest of 4 children, the window seat is still the must have, whether it be the car, an airplane, and now we can add chemo treatments.

I enter Room 5 and pick the only seat that’s available…Not a window seat but I can see outside just fine. I sit in a reasonably comfortable recliner and wait alone for about 15 minutes. The woman who brought me in returned and said she didn’t realize I was a new patient so she explained that I would be hooked up to a portable IV stand so that I can take myself to the bathroom, something I would probably be doing several times over the course of each treatment. I waited a while longer until a nurse came over to start the process.

She asked how I did with needle sticks and while I typically do fine with them, I related how the Pre-op nurse a couple of weeks ago had trouble and I showed her the resulting bruise from that procedure. She took a look and explained that I had very good veins so that nurse must have been new. She then added, “Nurses aren’t taught to insert IV needles in school.”

 “You’re taught on the job?” I asked.

“Yes we’re taught on the job. This is my first time too…just kidding, this is probably my first thousandth.” OK, I can work with sarcasm. She inserted the needle and seemed like she could have done it blindfolded.

The fist chemo treatment was fairly uneventful, I watched some TV, including a rare Red Sox day game (they get NESN), uneventful that is except for lunch. If your chemo treatment crosses the lunch hour, a nearby “gourmet” food store provides bag lunches for the patients. Lunches include, half a sandwich, soup, chips, cookie, and a piece of fruit. At around noon, I was handed a bag lunch. I was reasonably hungry so I opened it immediately to see what goodies were inside. This is what I saw:

Photo 1

Having been raised by parents who were children during the Great Depression, the concept of what constitutes “edible” food was not typical of today’s standards. While reminiscing with my brother a while back, he summed up our upbringing with regard to moldy food, “There are two kinds of mold, the kind you eat around and the kind you cut around.” I’ll let you decide which one applies here.

I shared the photo of the apple with families and friends, because it’s what I do. I gave the apple to the chemo nurse who was taken aback and said, “I’ve never seen an apple like that.” I assume somewhere in the quality control department a complaint was made, unfortunately I have bigger fish to fry so I’m letting that one go, although I did share it with a doctor later that day.

Chemo ended around 3pm and I was sent back to connect with the radiation doctor who I missed this morning. He went over the biopsy results, confirming what I had and stated, “No surprises, there’s nothing interesting about what you have.” Hopefully it stays that way. I felt Day 1 had gone as well as could be expected.

Tuesday, May 21, 2019

Set List: Brown Eyed Woman, Johnny B Goode, Crazy Fingers

I entered radiation to yet another slightly different team of techs. The lead tech had no interest in music choice for the procedure so I became a bit anxious. She was completely focused on the machine and processing another body through radiation.

Soap box time: Thankfully, I haven’t had many medical procedures in my lifetime. One aspect of procedures I do know about and am learning even more these days, is that there is a drug for everything. The downside to this is that many of the drugs need to be taken to counteract the side effects of another drug. I’m already on 3-4 drugs from chemo that are taken for these purposes, to offset each other’s side effects. My motivation for listening to the Grateful Dead during radiation is to eliminate the need for another 1-2 medications.

Since the beginning of time, music has played a role in bringing a calmness and joy to humans, doesn’t matter the kind of music. What the music of the Grateful Dead does for me is break down all barriers to time and space. There is a drug I could take for the anxiety of being bolted down to the radiation table, but if I can get into a state of mind simply by tuning into the music, the number of minutes on the table and the walls of the radiation room disappear. The mask becomes my friend, my protector. I don’t know for how long, but I don’t need to know how long, long enough is all that matters. It is a peaceful state of mind for me.

In my opinion, the lead tech has lost touch with that aspect of caregiving. She’s been there a few times this first week, not interested in whether I can hear the music, not interested in whether the Dead are even playing. I will be addressing this directly as necessary. Thirty seconds of effort to be compassionate is not asking too much. Hopefully in a couple of months this will all be behind me but right now I’m living it. Don’t skimp on the compassion!

After radiation I had to drive to another hospital for a consult on having the feeding tube put in. The appointment was short and sweet, got some more inconsistent information about proper care, depending on which hospital protocol is being used and confusion over whether I would be using the tube right away or taking a wait and see approach. It was over by noon and I was on my way home. The rest of the day I concentrated on needing to eat and hydrate but was feeling a bit drained from information overload and not very interested in eating at all, probably from the chemo. I was relieved that when I started to eat lunch my appetite was fully intact.

Wednesday, May 23, 2019

Set List: Whipping Post (Allman Brothers), Friend of the Devil

Today is one of those days that I feel is going to be few and far between. I need to drive to treatment, receive treatment, return home. That’s it! More mini battles over the music, as described previously (note set list above…), but otherwise all went as planned. My tech friend Joe was present, ensuring the music was to my liking.

Thursday, May 24, 2019

Set List: Dark Star

Today was the opposite of yesterday. No quick stop by for treatment and go home. Today we had to be in radiation by 7:15am and then on to the other hospital for the feeding tube procedure by 8am. Radiation was done promptly upon arrival and we were on our way to the hospital. We made it in plenty of time and again were promptly admitted to the operating room.

The tube procedure went very quickly from start to finish. I was given a twilight cocktail in the OR because they needed me awake to swallow several times while a small camera was inserted in my nasal passage and then sent down my throat. So yes, basically I need to swallow the camera. Once the camera was in place they knocked me out with a stronger sedative. I awoke in post-op and then was moved to a more formal recovery room.

It was here where things changed somewhat profoundly. As I became more alert, I also became more aware of the pain in my chest. Like some of the other procedures to date, I am so damn naïve when it comes to this stuff. I knew I was having surgery but all along I only kept hearing, “Put the tube in, get it done now, don’t wait, you’ll be thankful later.”

Now with the pain enveloping me, I was concerned. The nurse reassured me that what I was feeling was completely normal, “You’re actually doing great with the pain. You have a wound similar to that of a stabbing victim.” Say what? I don’t remember that little tidbit in any of the consults and recommendations of having the feeding tube inserted. It was here that I also realized that my challenge of pain management was going to rear its head again.

After about 5 ½  hours in recovery we agreed I should be released. There wasn’t much point in hanging around unless I was going to demand some serious narcotics and admission overnight. I was looking at a quick day on Friday and a long weekend of no treatment so I opted to go with whatever the night brought at home.

We arrived home around 4pm and I sat in shock for a couple of hours, no appetite, not having much to drink. To manage the night I applied the same strategy I used in the recovery room. I got into bed, eventually, after a couple of tries of zero comfort, found a position that didn’t exude pain, and stayed like that for about 10 hours. I took some Tylenol and Aleve then I dozed in and out on my back until the sun came up.

I arose to get ready for the Friday regimen and was pleasantly surprised that I was hungry and ate a banana and drank some water. Since the procedure eliminated showering for several days I threw on some loose clothing and we headed out. I had a blood draw scheduled for chemo prep, a meeting with a chemo nurse, and a radiation treatment. My biggest concern was the radiation as lying flat on the table locked down while recovering from a STAB WOUND might be challenging.

The blood draw and meeting with the nurse went fine. I found it a little absurd that this blood draw, being done less than 24 hours after a surgical procedure that resulted in me being dehydrated and undernourished would be used to gauge the next chemo treatment. Sure enough, the blood test showed an issue: low platelet count. Not sure how accurate that is though because Aleve can have an effect on platelet production. Stay tuned.

Apparently I also showed a low sodium count so I was told to add salt to meals. Being a salty snack junky, I told the nurse I never thought someone suggest more salt in my diet.

From the chemo nurse it was on to radiation. I walked into the room and the crew was a little taken aback at my appearance. One of the techs asked if I had just been released from the hospital because unlike days 1-4, today I looked like her dad in my socks and sandals. Ah, the aging process of illness.

The radiation team was extremely patient and provided a lot of help to get me through this treatment, from helping to get on the table, making sure I was relaxed and, yes, Joe showed his concern for the music. I escaped to my safe place, the session went well and we called it a day. End of week 1! Looking forward to the long weekend, or so I thought.

We were home for a couple of hours when I noticed my patient portal had a new test result. I logged in and saw there were results for a bilirubin test. The result on the graph showed it was high but beyond that I didn’t understand what I was looking at, until about a minute later when the phone rang.

It was the chemo nurse we had met with in the morning. She wanted to let me know about the bilirubin result. She said it was probably related to the surgery on Thursday and not to worry, we would do another blood draw Tuesday morning. So rationally I’m not worried about the result, I literally went from 9pm Wednesday night with extremely minimal fluids or sustenance for 48 hours and here was a blood test spitting out results with red flags. My only irrational concern is we wait over the weekend, make that the long weekend, before getting some confirmation of new results and whether there are problems brewing.

Friday ends week 1 of treatment. Looking back, this was the week that was supposed to be uneventful. While I’m a bit stunned by how things turned out, I realize that the feeding tube is what turned this into such a tough week. From others I have heard from, I think it was the right decision to have the procedure done now rather than later when my tolerance level might have been severely compromised. So things haven’t gone the way I envisioned but so be it. The issues that arose still fall into the category of treatment side effects. We plod along toward week 2 beginning Tuesday.