Week 11 and Beyond – A Look at the Dark Side

Today is August 29, 2019

This is the first blog update since the week of June 16. I did provide a Facebook update on July 20 and am happy to report that my recovery over the last month continues to go well. I have gained back about half of the weight I lost which, according to my PCP, puts me at about my ideal weight. Not a method I would recommend to anyone to get there, but here I am nonetheless. I am no longer using the feeding tube and am thrilled that it has been removed. My spirits are usually pretty good though there are times when fear and doubt creeps in. I’m sure they’ll be lurking in the background for the rest of my life but their presence has diminished with time.

If you just wanted an update you can stop reading now. The rest of this entry is extremely long, but a good read just the same. It is probably more for me than the reader but I need to bring closure to the darkness that enveloped me for several weeks at the end of June into July.

On June 24^th I entered the last two weeks of treatment. What was different about these two weeks was my son was in town to help me through these final days of treatment. I was taking pain meds regularly and the drowsiness effect prevented me from driving so he chauffeured me back and forth to treatments and appointments. Having his company was the high point of these difficult days. He provided a much needed respite to my wife, who was able to return to her regular work schedule and some normalcy. I felt safer with him present at appointments knowing that he would take in the information and

retain bits that I would forget.

Radiation therapy continued for 5 times a week Monday through Friday. At some point I got fed up with the technical glitches affecting the Grateful Dead streaming over the hospital’s network and I resorted to what my original idea was back in May, I simply hit play on my iPhone, placed it on the counter in the radiation room and streamed the Dead while I received treatment. If I had just done that from Day 1 it would have made everyone’s life easier but this blog would probably have lost 50 percent of its content, so there’s that.

On Tuesday, June 25^th, we met with a nurse practitioner for chemotherapy as part of my routine appointments. This was the same NP that I saw the previous week. At that appointment she gave me some encouragement by saying, “I know it probably doesn’t seem like it right now, but you will feel normal again.” It was unsolicited and I don’t know if I was presenting as depressed or it was something she just felt was important to tell me but either way I really appreciated hearing it. She moved high up on my list of quality providers. She also told me that my blood results were potentially going to impact my chemotherapy (mainly the low platelet count) and that it is not uncommon to have to skip a week and I should not be concerned if that happens.

At this appointment, we went over my weight loss, what meds I was taking, a brief inspection of my throat. I had just had blood drawn from the lab but the results weren’t available yet. We discussed how my platelet count was getting to a critical level and that if it was below 75k, I would not receive chemotherapy that week. She asked however if I would be open to coming in on Wednesday regardless to receive fluids as many patients feel a little better with just the extra fluids. I said I was open to whatever her recommendation was.

As we were about finished with the appointment and the lab results were still not in, she reiterated that the platelet count would be the deciding factor and asked if she should call me later with the results. I try to be cognizant of people’s time and in this particular case I knew that I could see the blood work results myself on the patient portal app on my phone. I reminded her of that and she laughingly said, “Oh yeah. Sometimes patients get the results before I see them.”

I said, “Since that’s the case I don’t think you need to call. I’ll see the results and if the platelet count is below 75k, I’ll know there won’t be chemo tomorrow.”

“OK, yes, that’s right.”

The last bit of business to attend to was to make her aware (and I had already brought this up on Monday to the radiation team) that I wasn’t on the schedule for a seventh chemotherapy session the following week. I had only been booked for six treatments even though I was to receive seven. She was surprised that this was the case and took me over to see one of the schedulers. The scheduler said she had seen emails about this “all day yesterday” and thought everything was all set. After a few minutes of “Who’s on First” she finally understood and by the end of the day had a chemo date for the following week.

As we drove home I checked my patient portal app and saw the blood work results were in. The platelet count was 73k, there would not be chemotherapy tomorrow. I had very strong but mixed emotions about this. On the one hand I was greatly relieved to not do chemo. I had a lot of anxiety about chemotherapy. I didn’t like the way I felt after receiving it and since I had landed in the hospital after the 2^nd treatment I was understandably nervous each week wondering if there might be a repeat. On the other hand, the chemo was part of the treatment plan and in the bigger scheme of things I wanted to be cured. There is no easy side to this, the information rolls in and decisions are made. It feels like life is completely reactionary at this point. I did think back to the NP explaining previously about how missing a chemo treatment is not uncommon so I did find some relief with that.

The next day we headed down for treatment and the timing was going to be different in that, with no chemo, I wasn’t sure how long I would be receiving fluids. I had my son drop me off so he wouldn’t need to wait around for hours. I would text him when I had an ETA for completion. After radiation, I was called for my turn in the chemo department pretty quickly. I sat in the chair, feeling calm and relaxed, unlike the week before when I got choked up for a minute or so upon being seated. Today would be different, no chemo today, just healthy fluids to make me feel better.

The nurse came over to get things started and after exchanging morning greetings I said, “No chemo today, just fluids.”

She responded, “What do you mean? You’re getting chemo, doctor’s orders right here on the computer.”

Clearly there’s been a mistake. “Platelet count is too low, it’s below 75k.”

“75K? That’s not the cutoff, who told you that? 70k is the cutoff.”

“No, that’s not what the NP and I talked about yesterday.”

“I don’t know what you talked about but it’s always been 70K. And the doctor put an order in for you to get chemo today.”

At that moment I never felt so many emotions all at once. Among them were, Anger about more misinformation, Fear about chemotherapy and what might happen, Desperation that I might be facing a life-threatening mistake, and Courage to stand up and demand an explanation before things spun out of control. “I want to speak to the doctor. I want to know what changed in the last 24 hours. I was told no chemo if platelets were below 75k. What changed?”

Chemotherapy, at least at this location, is administered in a very public room. There are four stations all visible to each other, unless the curtain is drawn at any given station. Obviously the curtain takes away the visual, but certainly not the audio. At this point the curtain was not drawn. As the nurse continued to try to convince me to accept the chemo, she was joined by a medical assistant who also reiterated that 70k was the platelet cutoff and besides, this was going to be my last dose of chemo because I wasn’t even on the schedule for the following week and that’s normal because most people don’t get every treatment. (Let that sink in…)

So now I’m arguing with a nurse and a medical assistant, not only about not receiving chemo, but also whether I was actually scheduled for next week. Talk about things spiraling out of control.

I insisted on speaking to the doctor or the NP before anything proceeded. The nurse left and returned shortly thereafter letting me know she was right, I was going to receive chemo. I countered that I was not going to receive chemo until I spoke to someone directly. She disappeared again, presumably to fetch the NP.

The woman who was receiving chemo directly across from me began shaking her head. She looked at me and said, “These people don’t get it. First of all this should be happening in private, not here for everyone to see. Secondly. they treat us as specimens. The patient is just an annoyance to them. All we are is data. They just care about treating the disease, not the person.” I nodded in agreement, too furious to even speak.

Speaking of furious, I noticed rounding the corner was the nurse practitioner. If I was to describe her as the angriest person I had ever seen, save for a mirror to see myself at that moment, it would be an understatement.

Just as she began to speak I asked her to draw the curtain out of respect for my new friend across the room. She grabbed the curtain and tugged so hard I thought the ceiling was going to collapse. She immediately launched into her explanation that the doctor decided late yesterday afternoon that I should receive chemo.

I asked, “What changed? The platelet count is below 75k. And by the way, the nurse is under the impression that 70k is the cutoff.”

She gave me a strange look at that last point, clearly I was bringing another contradictory tidbit to their attention. She then offered the following in a very loud, angry tone, “I AM IN NO MOOD TO ARGUE WITH YOU TODAY!!”

I was absolutely floored. I took a moment to consider what she had just said. I had only seen this person twice prior to today. I had had pleasant exchanges with her both times. Why am I suddenly being labeled as “argumentative?” What I heard in her statement was, “SHUT UP. DON’T ASK ANY QUESTIONS AND TAKE YOUR MEDICINE!!”

My internal response was, “THAT AIN’T GONNA HAPPEN, EVER!!’

I considered walking out but decided that wouldn’t be in my best interests. My actual response was a little more reserved and calm but it reflected how I felt, “I’m a human being, I deserve to know what changed with my treatment.”

She was a little thrown by my response but it did settle her down quite a bit. She first tried calmly, “Remember I offered to call you yesterday about whether you would be receiving chemo and you said I didn’t need to call?”

I immediately shot that down and said, “C’mon. You know that was strictly related to the platelet count. What changed in the last 24 hours? If below 75k was the cutoff yesterday, why isn’t it today? I’m not refusing treatment, I just want to know what changed?”

She responded, “The doctor decided she wanted you to receive treatment.”

We went on a little longer but it became apparent I wasn’t going to receive any more insight to the matter. I was satisfied however that I wasn’t about to be victimized by a mistake and I relented to the treatment. The NP yanked the curtains back open almost as abruptly as she had closed them and stomped off. The nurse returned with a big smile and began the treatment process. My friend across the way shook her head.

I received a visit from the social worker an hour or so later and she was horrified when I recounted the confrontation from the morning. She spent quite a while with me processing it. I think she was also processing it for herself, being fairly new to this treatment center. She shared that she found the interaction unacceptable also.

Later that day, as I was exiting the building, I heard one of the receptionists say, “Tonight is the wake.” I didn’t think much about the statement until several days later but when I did, those few words, cleared up a lot having to do with the confrontation. While what I was subjected to was inexcusable, I eventually was able to forgive the NP and see what happened for what it was: Two human beings, each having their own bad day, whose paths clashed with each other for a few moments in time. Nothing more, nothing less.

Let me add context here. When I first began treatment I was assigned a nutritionist. After a couple of weeks I was told she had a family emergency and was not available. After another week or so, I was assigned to a different nutritionist who shared with me that the first nutritionist’s husband had died unexpectedly. Much of the staff that I have dealt with there are older, late 50’s and 60’s mostly. They look like they have been colleagues for many, many years, thus I’m sure there are lots of close friendships. While I don’t know for sure, I presume that the NP is a close friend of the nutritionist and was grieving for her friend’s loss. With the wake being that day, this probably explains the, “…NO MOOD…TODAY!!” Again, an inexcusable response to a patient, but objectively I can see it as a human response just the same.

While driving home (the forgiveness part hadn’t sunk in yet), I do think I figured out why the doctor ordered the chemo. If we skipped the treatment, it would leave one week left. With my platelet count trending downward, it is very likely the platelet count might be below 70k the following week which would negate having treatment again. That would make for receiving only 5 out 7 treatments. Given that scenario, the doctor must have decided it was worth doing the chemo this week, expecting to skip next week, and overruled the NP. I was not only confronting an NP who was grieving, she was possibly also steamed about having to face an upset patient and justify her boss’ directive that she probably didn’t agree with.

So while I am finally able to put that to rest, the one thing that stays with me is this: How long did it take to read the explanation in the paragraph above? About 30 seconds perhaps? That’s all it would have taken to explain to me why things had changed. They couldn’t even give me 30 seconds to try to put me at ease. That is what is really inexcusable.

It took a couple of days for all of the trauma of the confrontation and subsequent chemo dose to work itself out. In the meantime I began to go downhill as far as my alertness and state of being. I was very tired, had a chronic headache, to the point where it was difficult to hold my head up. Whenever I stood up I had to steady myself. My wife had to sit in the bathroom while I showered as things were a little sketchy for me there. Walking was a very measured exercise and I was feeling a little bit lousier every day.

After finishing radiation on Friday, I was relieved that the week was over, one week left. As my son and I drove home discussing the Boston sports scene to help take my mind off of things, our conversation was jolted by a large rock striking and cracking the windshield of my truck, excellent, one more thing to deal with. Instead of heading home I had him drive directly to the glass company and scheduled an appointment to replace the windshield. Another problem solved.

Over the weekend I tried to become more proactive given my weight was still decreasing so, in addition to pouring additional cans of protein formula into my feeding tube, I upped the number of ice cream shakes I was drinking. I also encouraged a trip to Dairy Queen with my son and daughter as it would be the last time all of us would be together for the foreseeable future. I even tried a DQ chocolate shake but my taste buds said, “No way” and after a couple of sips I had to throw it away. That weekend I also branched out and tried to address my new cravings to add flavor to the plain water I was drinking all day long. I added a splash of different fruit juices and was beginning to find some flavors that brought a little better taste under the circumstances. I was feeling good about the flavor direction but I continued to feel lousy overall.

July 1, 2019

By Monday morning’s treatment and appointment I was definitely “off.” My blood pressure was up and the nurse said I was dehydrated. I explained how much water I had been drinking so I couldn’t understand how I could be dehydrated. She said I was definitely dehydrated and they could give me some fluids there. After several minutes of considering all possibilities, I heard the nutritionist say, “Check his blood sugar.”

The nurse left and returned with a glucometer. She stuck my finger and waited for the result. I was so out of it all I heard was “94.” The next thing I heard was the doctor say, “I don’t know what to do. I’m going to page the other doctor.”

I inquired about the result, “What was it? 194?”

In unison, several voices said, “494!”

The nurse spoke up and said, “You need to get to an emergency room right now. I’ll call ahead and tell them you’re coming.”

As they scrambled to finalize their roles, I began thinking about all of the sugar I had ingested over the last several days between increasing the homemade shakes and as my son mentioned a little while later, the DQ chocolate shake that I almost consumed but for the taste buds rejecting it. Who knows if I would even be writing this now if I had?

My wife and son drove me to the hospital about 15 minutes away. I was seen immediately. As part of the intake my pulse was taken and, shocker here…I was told my heart was beating fast. They would need to do an EKG. I didn’t bother arguing, I thought, “just read my blog…”

A nurse approached and started me on IV fluids and I began to feel a little bit better. After a few minutes I was wheeled down to the main emergency room and placed in a stall/room. My blood sugar was checked and I was given some insulin. After about 45 minutes or so my blood sugar was down to about 240, half of what it had been. I also continued to improve overall, from the fluids I guess.

Just when I was feeling better and felt like this would be a fairly quick event, the ER doctor returned and asked, “Have the doctors treating you for cancer told you if it has spread to your brain?”

My soul was crushed. What was she saying? Does she already know this? How is my wife and son feeling about this information? I felt like my life was spinning out of control and there was nothing I could do, I was helpless. I was officially at the scariest moment of my life.

She added, “Sometimes when a cancer patient reports dizziness, it is because the cancer has spread to the brain. I want to do a CT scan to check.”

I was wheeled over for the CT scan, a mere 50 feet from my stall. The CT scan was performed and there would be about a 3 hour wait for the results.

In the meantime because of the severity of the blood sugar, the high heart rate, and oh yeah, the cancer, I was admitted to the hospital that afternoon. I was placed in a room with another patient, “Chock” who was Filipino I believe. It looked like he had been living there for quite some time. He spent much of the afternoon on his phone, only interrupting the calls when someone came in to check on him. His TV was set to MSNBC which provided a constant low background murmur, day and night. Because his English was limited, most of the attendants and doctors engaged in the stereotypical approach of speaking in a higher volume as if, since English wasn’t his primary language, he would understand better by increasing the decibel level.  Not a big deal during the day, but BRUTAL during the overnight hours. I felt like screaming “He isn’t deaf, he just doesn’t speak English as well as you do.” I also noticed a habit of his attendants to make a loud noise whenever they entered the room to wake him up, presumably so they could perform whatever function they were there to do. Was that really necessary?

Eventually I was visited by doctors I had met in the ER who told me that my blood sugar had spiked likely due to the steroid, Decadron, which I had been taking 3 times a week as part of the chemo cycle drugs.

This began to make sense to me. I had been noticing week to week that my glucose number was trending higher every week. Due to the many other factors I was trying to juggle and keep track of, I kept forgetting to ask the doctors about this trend. Now here I am in the hospital again, and I just went from being Pre-diabetic to having Type 2 Diabetes. I knew I should be concerned about this but for some reason it seemed like a minor issue within the bigger picture. “One more thing before you leave, is there a result of the CT Scan?” I asked.

“Oh, that’s what you’re probably interested in the most isn’t it? It was negative. There is no indication of the cancer spreading to your brain.” I looked at my wife and son and choked up with profound relief.

So like Dizzy Dean said, “They X-rayed my head and found nothing.” (I always thought this was attributed to Yogi Berra but I stand corrected.)

The rest of the day and night were spent being finger pricked every few hours to check my blood sugar, having my vitals checked, and blood draws. My wife and son stayed with me and I had emotional highs and lows for several hours. They eventually left after dinner to return home. Since I hadn’t had any sustenance all day, the nutritionist from the hospital got involved and I was hooked up to a pump containing formula for diabetics and was fed through my feeding tube overnight.

At one point during the night, the medical assistant checked my temperature and for some reason didn’t like the result from the thermometer and as she retrieved a different one I took a sip of water. She took my temp again and got a different result. She then asked, “Did you just have some water.”

“Yes, I took a sip just now.”

“Well I can’t use this result, I’ll have to come back in a little while and take it again.”

I never saw her again.

I got maybe a total of 2 hours sleep overnight. Chock’s TV remained on all night. I don’t typically watch MSNBC but that night I learned that they recycle the same few news stories over and over and over ad nauseam. It seemed like Chock slept throughout the night but I couldn’t get more than 15-20 minutes at a time.

During one of the overnight vitals check my temperature rose slightly above 100 and I was given Tylenol to bring it back down. This was important as it was cited the following day as a reason to keep in the hospital an additional night. It was described as a temperature “spike.” I mentioned it to a nurse later on Tuesday and he scoffed at that, saying, it could have simply been the difference in the thermometers.

Sunrise came Tuesday morning and I was informed that an ambulance was on its way to transport me to the treatment center for my regularly scheduled dose of radiation. I was offered breakfast but since I had no idea what foods I could have, I declined. Throughout the days there I was constantly offered meals but clearly there was no thought being given to my condition. I was finally offered fruit cups and coffee for meals. I didn’t think fruit cups were a good idea because of the diabetes, and caffeine is supposed to be off limits for cancer patients. I told them I was fine with the formula pump for now.

The trip over to the treatment center was uneventful. I was brought in on a gurney, transferred to a wheelchair, brought to radiation. As I was leaving the radiation oncologist caught up with me, inquired how I was doing and if I was feeling any better. I told him I was but complained about not getting any sleep and offered, “Sick people should not be in the hospital.” He wholeheartedly agreed. I also expressed my concern about having chemo on Wednesday since there was a pretty strong consensus that it was the cause of my hospitalization, again. He said he would discuss it with the chemo doctor.

My wife was in my hospital room when I returned. We sat and talked and took in information from various attendants. The doctors visited and said although I was doing well, my temperature spike overnight was concerning enough to keep me another night. The other situation unfolding was my anxiety over another chemo treatment on Wednesday. I was convinced that the chemo was killing me and I absolutely did not want another dose. He said he would discuss the situation with my oncologists and let me know what they decided.

Around 2pm Tuesday my nurse had a conversation with my wife while I was in the bathroom. She said she felt bad for me being in such a noisy room and knowing I wasn’t getting any sleep. She told my wife a private room was becoming available at 3pm and she advocated for me to get it. My wife later confided that she was concerned at first that this move might be due to some unknown dire situation they hadn’t told us about, but the nurse reassured her it was simply to allow me some rest. I don’t know what I did to earn her advocacy but I sure am grateful for it.

About an hour later I was wheeled down the hall, out of the noisy end and into a very quiet section of the floor. Paradise compared to where I had been. My nurse, Tim, was very talkative. Tim shared that his former father-in-law had been an oncology surgeon. We discussed my treatment and I said it’s becoming clear to me that the challenge for the patient is more about surviving the effects of the treatment than the cancer. He pointed his finger at me and said, “That’s exactly the challenge.”

My wife later said it was interesting that during my two hospital stays I had had two male nurses. One was a former contractor who became a nurse later in life, and Tim had formerly worked in IT before becoming a nurse. I had also been in each of their previous careers.

The doctor visited around dinner time and informed me that the oncologists agreed that I should not receive any more chemotherapy. I felt such an enormous rush of relief I didn’t just choke up, I sobbed outwardly with my wife standing by my bedside comforting me. Between gasps and tears, I thanked him for the information.

Tim finished his shift at 7pm and I was “handed off” to the next nurse for the overnight. My wife stayed until after dinner. I was reconnected to the feeding pump again and received formula through the feeding tube overnight. My blood sugar situation had stabilized so I was really only spending the night because of the previous night’s temperature spike. I discovered one way to not have to report another temperature spike was to NOT CHECK VITALS overnight. I suspect Tim, or the doctors or another nurse, suggested that I be watched from a distance but to let me sleep as much as possible that night because when the nurse left the room at 9pm I wasn’t disturbed for the entire night. I slept off and on but had a very restful overnight.

At 7am I told the nurse that I expected another ambulance transport to take me for radiation, as had happened on Tuesday. She was unaware but left to check about it. She returned and said it would be arriving soon.

After declining another breakfast of fruit cup and coffee, the transport service arrived and I transferred to their bed. The hospital is undergoing a major renovation so the route to get out of the building was circuitous. As we headed down in the elevator, one of the attendants asked me if I wanted to wear a T-shirt instead of the hospital gown I was wearing as a top. Sounded good to me so he said we would be exiting through the ER and he would grab a shirt for me from their supply. I wasn’t sure what he meant but I’d find out soon enough.

As we rolled through the ER, he stopped at the main desk and spoke to a couple of nurses. They all seemed to know each other, probably common between first responders and ER staff. He motioned towards me and one of the nurses walked away and returned with a green T-shirt. He thanked her and tossed the shirt on my chest and said I could change once we were in the ambulance. He explained that the ER uses the green shirts for psych ward patients who come into the ER so they can keep an eye on them and tell them apart from the rest of the patients. I said, “Perfect, since I’m a basket case right now.”

We reached the ambulance and they lifted me into the rear of the vehicle and began the drive to the treatment center. Although I was lying on my back looking at the interior ceiling of the ambulance, I could tell we were at the center. The driver was not aware that there were restricted turns adjacent to the center so he overshot the entrance and had to go a mile down the road and make a U-turn. His partner in the back with me told him next time he should just “throw the lights on” and make the illegal turn, one of the perks of driving an emergency vehicle.

As we entered the center, I was greeted by my wife and son. I had insisted they be present when I arrived because I was feeling so unsure of myself emotionally, physically, and psychologically that just in case there should be a change in plan about the chemotherapy I wanted their advocacy on my behalf.

The ambulance attendants transferred me to a wheelchair and unlike the previous day, explained that since I had multiple appointments, they could not stay and wait for me. I would need to have the center call for another transport back to the hospital when I was finished.

I went to radiation first, gave another blood draw at the lab, and then waited to be called to see the chemo doctor. After a few minutes in the waiting area my name was called by the medical assistant. We entered the inner offices and I was asked to get on the scale for my weekly weigh in. I don’t remember what the result was but since I had been feeding for the last two nights continuously my weight was at least respectable.

We then entered an exam room and waited for the doctor. I was extremely nervous about this meeting. I slowly rocked in the chair back and forth. My wife and son knew my concerns and we didn’t speak much. I heard voices in the hallway getting closer to the doorway and I recognized it to be the chemo doctor and radiation nurse.

As they drew closer I heard the doctor say, “He really could do another one. His numbers aren’t that bad.”

Just as she finished speaking they came through the door. My head was very cloudy and I’ll admit from this point I don’t have as clear a memory as I would like but my recounting that follows is pretty close to reality.

I was alert enough to do battle, again. I’m really not sure who spoke first but after exchanging, “Good mornings” I believe I said, while staring at the floor, “I’m not doing chemo. I just can’t do it again.”

The doctor didn’t address this initially. She backed things up asking what happened at the hospital. I said that the consensus among the doctors and nurses at the hospital was that the Decadron steroid from chemotherapy had caused my blood sugar to spike. It was a known side effect and now I was a full on Type 2 diabetic. She brushed aside the information and said she wasn't so sure that was the case and the spike was probably due to the cumulative effects of the treatment. I also shared the ER experience of the possibility of the cancer spreading to my brain and the CT scan and she said the ER doctor was probably not very familiar with different kinds of cancer and that the type I have doesn’t typically spread to the brain.

For me, the most important aspect of our interaction thus far was that she showed no empathy towards me. I had just spent the last 48 hours riding another emotional roller coaster of fear, anxiety, feeling discouraged, and helplessness, and she showed no empathy to my plight. I’m not looking for anyone’s pity and I know many who are worse off than I am but I do want at least an acknowledgement from my doctor that I am going through a very serious struggle. Brushing off the opinions of those professionals that cared for me over the last two days, who did their best to explain what was happening to me and offer me comfort was not acceptable to me.

After we finished catching up with what had been, we discussed what was to be. She said we had to make some decisions on how to proceed, including whether I would do chemo again. I emphatically stated I did not want to have another dose of chemo. She began a clinical explanation of my treatment plan. My plan was 95% radiation and 5% chemo. The 5% included 7 treatments. If I were to miss one of those treatments it was 1/7 of 5% which would be extremely small statistically speaking. She was fine with skipping the last treatment. I could feel my entire body relax. She did say that my numbers were “OK” for another dose; though my white blood cell count was “low” it wasn’t “dangerously” low, and I later saw my platelet count was about 83k. Sorry, not convincing enough to change my mind because the issue now was the Decadron, blood sugar spikes and diabetes.

We then came up with a plan to finish radiation that week given that Thursday was July 4^th and the center would be closed. I would come in twice on Friday the 5^th. My last radiation treatment would by at 5pm Friday afternoon. As things became a little calmer I wanted an absolute final confirmation from her about skipping chemo. I asked her if she was OK with it. She said my prognosis was very good and yes, she was fine with me not getting that final dose.

The last bit of business involved the nutritionist. I was expected to be released from the hospital later that day, again since there were no vitals taken overnight there were no red flags to keep me there. The formula I had at home and pretty much my exclusive source of calories was no longer acceptable. I was going to need a formula for diabetics. She would have to research this and I would receive a delivery at home. In the meantime she offered several cans of various diabetic formula she had on hand to tide me over.

She also went over what I could eat and not eat. First on the DO NOT EAT list; Fresh Fruit! The same fresh fruit the hospital had offered me 5 meals in a row. No fruit juices. No desserts. At this point most of this information was moot because I couldn’t stomach anything for a variety of reasons: loss of appetite, dry mouth, compromised swallowing, and almost no taste buds. It would be formula for me for the foreseeable future in my mind. She asked if I wanted a pump to be able to have feedings overnight and I agreed. 

She then informed me that I would need to take in 10 cans of formula every day for a total of 3000 calories. I thought to myself it seemed like a lot based on my recent experience at home. This was soon confirmed as the chemo doctor who was still in the room said, “10 cans? That’s absurd, no one does 10 cans a day!”

I assume the hierarchy in the room played a part in her response as the nutritionist looked at me and said, “Try to do 10. You need the calories to keep up your weight.”

Once we were finished I asked the doctor about calling a transport to return to the hospital. I shared that the attendant said it sometimes takes two hours for an ambulance to come so would it make sense for my wife and son to drive me there since they were going anyway, or would that break some kind of patient-hospital protocol? She said she thought it would be fine, “What are they going to do, send you back here to wait for an ambulance?”

So, although a little concerned, my son walked me outside and my wife got the car and picked us up at the front door. On the way it struck me that here we were on our way to the hospital, 3 “civilians,” one of them wearing an ER Psych Ward t-shirt and hospital bracelet, about to walk back into the facility “unattended.” It was a scene right out of a Woody Allen movie. (Sorry, had to say it.)

As we approached the building, I told my son to grab a wheelchair inside the entrance because although I was emotionally feeling better about things, I was still physically weak and unsure on my feet. My wife dropped us off at the front entrance and we entered and I sat in a wheelchair in the lobby. My son and I waited for my wife to park and return and the three of us made our way through the building back to the 8^th floor and the comfort of my private room. We had made it back inside uneventfully. What a shock, not one person connected with the hospital batted an eye. Makes you wonder about the effectiveness of the whole green t-shirt ER system. My impression is, if one can break out beyond the ER, you’re free to move about the country.

So now we wait. It seems whenever you’re in a hospital and receive word that you’re going to be released, the waiting is definitely the hardest part. I don’t think, whether the patient has been me or a loved one, that we actually have left the hospital in less than four hours. I know there is paperwork to do and summaries/release notes to write, but it is excruciating. I understand the psychological piece plays a major part as from the moment you’ve been admitted the goal becomes getting well and being released.

In this case it took approximately 6 hours. The holdup was a consult with an endocrinologist that needed to happen because of the diabetes. So while I snuck back into the hospital at about 11am, the consult with the endocrinologist didn’t happen until about 5pm. I was offered lunch, “fresh fruit cup? no thanks” and we met a couple of times with the hospital nutritionist who was clearly in over her head. The oncology nutritionist had taken over my case and new diabetes situation and the hospital nutritionist struggled to keep up with what I was going to need. Thankfully she eventually deferred to the other nutritionist and did not interfere with my release.

The endocrinologist was nice enough and gave me the impression, as others had said, that it was likely I would go back to being pre-diabetic once I recovered fully from the cancer treatment. She said she would be happy to see me in the future but my case was such that my PCP could probably manage this. I was fine with having my PCP involved and would keep her for further consults if necessary.

The last piece to the release puzzle complete, I was free to go. We made our way home, stopping off at our local pharmacy for a new set of meds. While there the nutritionist called and said the order for the new diabetic formula was all set. I was pleased to hear that but nervous about the next day and half. It was 6pm July 3^rd, tomorrow was the 4^th of July and probably no one would be available so my calorie intake for at least the next 48 hours was questionable. We had the formula she had given us earlier that day but not nearly enough to make it through the next few days, and it had been sitting in the car with temperatures in the high 90s so who knows if it was even any good still. It also struck me that there was a possibility that if things didn’t “click” on Friday July 5^th, I could be looking at 4 days before the new formula would get to me. I was going down a rabbit hole of panic again.

My wife and son pulled me back out by pointing out that worst case scenario we could buy formula at CVS or Walmart over the weekend to get by. I was back to a fairly good place again.

Thursday morning, July 4^th, I received a call from a visiting nurse who later came over about 1pm. I was very surprised by this but also very thankful. I shared my continued concern about the formula and she got out her phone and called the supplier. After an extraordinary wait, her call was answered by a real person, on the 4^th of July no less! The representative took my information and said she would look into it and call back. As for the VNA visit, my vitals were fine but I was still struggling physically. The same advice I had been receiving, “You’re a bit dehydrated, keep drinking water.”

At 4pm that afternoon, my phone rang. It was the formula supply house. She had no information except my phone number so I had to explain the situation again. She put me on hold for a little bit and then returned and said, “I show no record of any formula ordered for you. In fact the last order I see is from June 26.”

Here we go again. I tried to push back a little but got nowhere except for a “maybe it’s still being processed and it isn’t showing up yet.” I thanked her for her efforts and immediately called the voicemail of the oncology nutritionist. Surprisingly she called me back about an hour later. She then informed me that the formula was to have been DELIVERED LAST NIGHT, not simply processed for a Friday delivery. So I had misunderstood her message from the day before. She was very angry that I was in this position. (I later found out that she called the supplier 6 times on the evening of July 4^th.) She got back to me later that night and said the supplier would be calling me shortly. At about 9pm I got a call asking if I wanted the formula that night around midnight or could I wait until Friday morning. I chose midnight.

At about midnight my phone rang and as I was asleep my wife took the call. All I know is she threw on a robe went outside and waved down a driver on our street who gave her a case of formula and an electric pump. Crisis was averted.

The next day my son opened the pump and, because he’s a genius, had it operational and understood its various functions within about 20 minutes. He showed me how to use it and we gave it a test run during the day on Friday.

We also made our way to the treatment center in the morning and again in the afternoon for the final dose of radiation. My wife joined us for the last one. After completing it, there is a little ceremony of ringing a bell 3 times to announce you’re done and my radiation mask was given to me. I have no idea what to do with it but we’ll see. I got the impression the doctor came in that Friday afternoon just to be there for me. I joked that their days of hearing the Grateful Dead were finally over, and got choked up as I thanked them for their care.

We returned home and I can honestly say I was exhausted. One of the worst weeks of my life had finally come to an end. I still felt like crap but had weathered so much that all I wanted to do was sleep. Unfortunately, it was also time to say good-bye to my son. I’ve said my wife has been my Rock throughout this ordeal. That being the case, my son was Superman. I’m not sure how I would have survived had he not been there for me.

As a parent, you want to be there for your children whenever they need you. I know the opposite dynamic happens in life but I felt bad, and told him so, that he was in this caretaker position, something I didn’t expect he would/should have to deal with for at least another 20 years. He took in so much information to keep me on track and had to stay flexible and agile throughout the two weeks he was here. I summed up with him in saying good-bye, “I’m the luckiest man alive to have you for a son.” It didn’t come out that smoothly because I was sobbing again but this time it was because I knew I was the luckiest man alive to have him for a son.

Friday night we set up the pump on the IV pole next to the bed and connected it to my feeding tube for what would be the first of 30 consecutive nights of overnight feedings. The whole process worked pretty smoothly every night, except for a couple of times near the end of the 30 nights when I got sloppy and we had a little spillage to deal with.

Early Saturday morning my wife brought my son to the airport and we were on our own again, at least for the next few days. Her mother would be next up to join us the following Tuesday but until then it was just the two of us. I’d like to say it was nice to have some time alone for a few days but really I don’t remember much about it. I was still not feeling well and my days were uber focused on ingesting the formula through my tube manually (it is known as a bolus or gravity feeding) and then connecting to the pump for the overnights. I was not taking any food by mouth and was so exhausted, mentally and physically that I just sat in a recliner all day.

We had another visit on Sunday from VNA. This time it was a male nurse, about my age. He saw the state I was in and gave me a pep talk about not succumbing to my depression about being sick. He said I would never get better sitting in a recliner all day. I needed to get up, move around, and find things to do. He talked about studies that showed how patients who moved around and exercised recovered much quicker than those that didn’t. I accepted that he was right. I didn’t know what to do but I knew I had to do something. He joked that the IV pole I was using sometimes for my manual feeding would need to become my new “date,” asking my wife not to be offended. I would at least need to walk around with the pole to get moving.

His talk probably did more for me than any of the meds and formula that weekend. It was what I needed to be told at just the right time. It was very easy to settle into doing nothing and feel sorry for myself which would have brought me down further. By the time he left I had convinced myself that I had rested enough from the exhausting week and I would need to start to figure out a plan to get some movement back into my life.

The beginning of the next week I began walking around the basement, a little bit every hour. It wasn’t much but I could tell it was movement in the right direction.

On Tuesday, my mother-in-law arrived. My wife picked her up at the airport and I stayed at home. When she came through the door I gave her a hug and wept briefly, thanking her for coming. This nightmare was difficult for not only me but my wife. It was difficult seeing what my circumstances had done to my wife’s wellbeing, knowing she wanted nothing more than for me to be myself again. Having her mother here now was going to provide an incredible amount of support for her as well.

On Wednesday we traveled back to the hospital to see the cardiologist for a consult on my high heart rate. He was a bit quirky, cited many research reports on cardiology and dehydration and said there wasn’t much to do now until I took some time to recover a bit from my treatment since things would likely be changing drastically over the next several weeks. I asked about exercise and he was adamant that I start doing something immediately every day. Even just walking for a bit. It would help my recovery immensely. What about my heart?  It will make things better all-around he said. He also suggested that I should start adding extra salt to my food when I returned to eating by mouth as it would help with the dehydration issue.

When we returned home the first thing I did was drag out our old exercise bike from the unfinished basement. Being summer, our treadmill was upstairs in a room with no air conditioning and besides I was still not very stable on my feet so walking, while a great idea, was not in the cards yet.  I’ve been doing about 7 miles a day 6 days a week and have increased the tension over the weeks so now I’m basically peddling uphill for 7 miles each day. My legs are feeling much stronger than they did 2 months ago.

By the end of the week I would see my PCP in person for the first time since all of this started. We had spoken on the phone a few times but I was nervous about my emotional state seeing him in person. He’s about my age and we’ve known each other for almost 30 years. He was also my children’s pediatrician and while I don’t know him outside of the office I consider him a friend.

When he entered the room I did breakdown a bit about how hard the last several months had been but I recovered quickly. He said it sounded like I should talk to someone ongoing, as in a therapist. because of all that had happened and was happening. I agreed it would probably help. Otherwise the appointment was a catching up of sorts. I vented a bit about some of the things that were missed along the way. I talked about my emotional state and how I got choked up at a friggin’ Walmart TV commercial the other day. He said as he’s gotten older he tears up at a lot of stuff he hadn’t in the past.

We discussed the new diagnosis of diabetes and what it meant short term. He was baffled though at my dehydration situation. He said he didn’t know what to say about it and asked if I trusted my nutritionist. I said I felt very confident in her ability, After all she was the one that suggested checking my blood sugar when everyone else was stumped about my dehydration, and she went to bat for me on the 4^th of July to make sure I got my formula before something dire happened to me. We agreed I should call her before the day was out since it was Friday.

I returned home and called the nutritionist. I told her about the dehydration and she said there’s no way that could be the case. She calculated the amount of fluid in the formula, added to the bottled water I was drinking and could not accept dehydration as a cause or symptom of why I still felt so lousy. I shared the cardiologist’s suggestion of adding salt to my diet. It was as if I could see the lightbulb go off over her head through the phone.

She said, “Ah ha! Tonight I want you to take a teaspoon out of your silverware drawer, fill it halfway with salt, don’t even measure it, and pour it into your overnight feeding bag. Do it over the weekend and let me know on Monday if it helps.”

That night I did as instructed. The next morning I arose and FELT LIKE I COULD RUN A MARATHON!! Salt was the issue! Apparently my sodium level was low but with no blood draws happening it wasn’t really thought about. There had been talk about electrolytes but the sports drinks were off limits because of the sugar and my diabetes and the “sugarless” drinks contain fake sugar which causes me to have headaches.

I felt like a new person. I continued to add salt overnight and slowly began eating solid foods and added salt where I could to the point where I eventually stopped adding salt on the overnights. It was life changing for me. I now felt confident that I might actually recover and survive this mess!

I will add that the following Tuesday the cardiologist called and wanted to discuss the dehydration issues. Not yet knowing about the great salt miracle of 2019, he said I would need to take in another quart of water daily. One of his “quirks” is he does not like to be interrupted by the patient and over the phone made it even more difficult to break in. He finally paused and said, “OK, I can tell you want to say something.”

I told him the issue was resolved and how I had mentioned his salt suggestion to the nutritionist and now felt like a new person.

He said, “That’s great! So my suggestion worked. I’m glad I was able to figure that out for you.”

Huh? Whatever.

The following day my mother-in-law’s stay came to an end and she returned home to Florida. I can’t thank her enough for her support. She had said a couple of days after arriving that now that she was here and had the lay of the land she saw for herself how intense and devastating this experience really was for us. There are really few people in one’s life who see you at your worst. Having her support during another difficult week was beyond words. As she said, “That’s what parents do.” She truly is and always will be a very special person in my life.

Recovery through July and August has gone well. I am eating between 2500-2800 calories daily and have maintained a constant weight of about 194 pounds for nearly a month. Flavors are slowly returning and we are pretty much back to eating regular meals. I still struggle with food choices because of the taste buds, dry mouth and diabetes. I am exercising daily and by the weekend I will have no encumbrances on my stomach. The feeding tube was removed a week ago and the bandage came off today. Later this afternoon I will need to wear a HOLTER monitor for 24 hours for the cardiology consult but by Friday night Labor Day Weekend will belong to me!  

If you have read this far, I thank you for sharing your time and interest in my journey. I have tried to provide a narrative of how the days were filled and some insight into what I was feeling over the last several months. It has been very helpful to me as an exercise to write down and record the details of this ordeal. Having had time now to process all of this I would like to share these final thoughts about the effect this experience has had on me.

I no longer feel like the same person. I feel like I was broken, shattered into a million pieces and now am hunched over, slowly gathering all of them but unable to put them back together the way they were. I also understand they’re not meant to go back together the way they were. These same pieces are creating a different me. It is happening now, as each day comes and goes, not something I will sit around and wait for in the future. It is a scary time but an exciting time. I grieve for some of the changes in my quality of life, trusting some will return; hoping others I haven’t yet discovered will appear. I recognize there are many millions of people worse off than me, so I am thankful for all that I have and for all of the love that surrounds me.

As one of the nurse practitioners said early on, “You can go down the rabbit hole and look around, but you have to come back out.” I visited the rabbit hole; it is terrifying. I’m glad to be back out.