I have not been posting much the last few weeks. Have not had much strength and been resting. I started the drug trial a couple of weeks ago, and to put it succinctly, it has been brutal.
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| Dropping weight without exercise |
5 years ago, when I was told that my cancer was incurable, there were discussions about how there was going to be more research into trying to figure out how immunotherapy can be used with cancers with mutations like I have. And here we are.
My first treatment was July 12. I finished the infusion. And within 30 minutes, I scrambled to make it to the bathroom across the hall from the infusion suite. And I began vomiting. A lot.
When I hit 35 times, I was pretty sure that I was going to see part of my insides coming out and was convinced if I hit 40 I would be reversing my digestive track. Between bouts of vomiting I would started repeating "Please make this stop." No one was in the bathroom with me. It is just one of the phrases that happens when I am going through extreme bouts during treatment. It can be the back and forth hot/cold patterns with headaches. Muscle spasms. Pain. I repeat it in a pitiful mantra.
I also use other less socially acceptable phrases on a loop. "F--k this noise." "F--k this s--t." My vocabulary can become very limited. The pissed off anger keeps me going. It is when I stop the routine that means i am losing the ability to try to push through things.
MSK kept me awhile longer, filling me with fluids.
I managed to make it to a Lyft a few hours later, got into the hotel room and fell asleep. I set alarms to wake up through the night to take the medicine that was required to be taken every few hours - acetaminophen and ibuprofen. (A major feature of the virus was causing flu like symptoms for 24 hours.)
I went back the 13th. More rehydration and anti nausea meds. Then went home. Within two hours of being home I was not feeling well. My brother and wife both noticed I was acting off. They took my temperature. 104.5. My brain was being cooked. They then spent time on the phone with the doctors at MSK trying to figure out a plan. Urgent care at MSK in the city would have been the best move, but with my back pain and the way I was feeling, getting into the city would have been difficult. I also was not interested in going to a local hospital. MSK's expertise is cancer. And they know my case well enough after 7-1/2 years. So my wife monitored me, gave me Tylenol and Ibuprofen. After a couple of hours my fever went down to 102.
The next day I went to the local MSK to get checked out. Nothing much happening. No infection. It is just one of the things that is a possible side effect of the virus. I just got whacked with it a bit harder. I basically slept the next week. Waking up with chills and hot flashes. Running a 100-102 fever until Sunday - 6 days following the infusion. Then down to 99-100. Overall a miserable week where I could do nothing. I was told that the first treatment was usually the worst and they became easier. That gave me something to look forward to. I only had to make it through three rounds with the virus, and one was done.
I went for the next round July 19. They loaded me with anti-nausea meds, so that was in check. But I started to have problems breathing. It ramped up when I went to the elevators to go downstairs and get a Lyft back to the hotel. My breathing was trashed. I could barely get into the car.
I finally got in and made it to the hotel. But I struggled to get out of the car. I couldn't breath. I got out and made it to the first seat in the lobby and rested. Eventually my breathing was controlled and I thought everything had passed. Got off the chair. By the time I turned the corner to the elevators I was not sure where I was. I generally knew I was in the hotel I was staying at. But I could not really be sure of my room or floor as I tried to breath. I slid down the wall and sat on the ground. I knew if I could make my room I would be okay.
Someone asked me if they could help, and I told them what I thought my floor/room was and they punched it in to the keypad. I was hoping I was right. I got into the elevator, then slid back down to the floor. The elevator doors opened at my floor and I pushed my backpack out into the hall and crawled over to follow it. There were some people in the hall. I explained, between my gasps, that "I am an EMT, not Heart Attack, Cancer in lungs from 9/11 and i am in drug trial causing issues." One guy took my back pack and room key after I said that I thought my room was the one three doors down. Fortunately I was right. Really thankful he was there to help. I got into the room, my breathing was still bad, but slightly improved. I was freezing beyond belief. Security staff helped get me extra blankets and the heat turned up. They asked me one more time about call 911. I said I did not need it.
I finally feel asleep. When I woke up my breathing was labored, but nothing like it was earlier where I was so altered I had no idea where I was. I bounced to the couch and slept there for awhile. I have no idea how high my fever went, but I was soaked when I woke up a few hours later.
My wife came in to spend the next couple of nights with me. I was pretty weak. I could walk 15 feet or so, but would be out of breath. I was using a wheel chair to get from the lobby at MSK to the treatment floors. And to get from the lobby in the hotel to my room.
Eventually it was determined that the virus was doing its thing. The virus will cause tumors to be inflamed. I have countless tumors in my lungs and many are rather large. Some of those are very close to parts of my airway where they can cause blockage. The strangest part in all of this is that my SPo2 is still good. It is the physical part of breathing which is problematic. I now have a albuterol nebulizer and oxygen machine.
I had a biopsy two days after the second infusion, which triggered my back pain. Up to that point, my back pain had really improved and was almost a non-issue. I made it home, but could not even stay in a shower for more than a few minutes. Usually it helps when I am not feeling well.
My ability to stand was trashed, and I would hold onto things to keep my balance. Back to using a walker. And walking any distance would cause me to be out of breath. Even walking 10 feet from the couch to the bathroom. I would sit and debate whether I really needed to go to the bathroom. Or if I was thirsty enough to sit up to drink due to the effort required to sit up.
So it all continued until about a day before the next infusion. Nausea. Limited vomiting. Hot/cold. Fever. But it was all enough that I really thought I dropping out of the study. There was discussion of maybe reducing the last virus dose. Or skipping the last virus dose. I was really tired and I was tempted just to give up to some degree. Like I said, I am really tired and beat up.
But there was the part of my mind that went with the thought that I needed to finish what was planned for the trial. Three virus treatments. That would give me the best odds of staying alive, despite my fear of whatever the side effects would be for the third round. The second was supposed to be easier than the first. But it was worse. So the third loomed like a monster ready to crush me.
But I finally got ready for #3. One of the issues that came up was my anemia. I have had anemia for awhile from the drugs and chemo. Nothing to really be done - eating food with iron and the other traditional things to address anemia really do not work when the anemia is from cancer treatment. But it turns out my anemia has gotten worse. They were going to give me a blood transfusion. I was right on the border of getting a transfusion, but it was decided not to do it.
I also had the difficulty breathing, the hot/cold situation and all the rest. When I got back to the hotel, I crawled into the blankets as I dealt with the hot/cold flashes and difficulty breathing, and slept for awhile.
It is now a few days after the infusion. My breathing is not perfect and giving me issues. Walking causes me to be short of breath. But it is not as severe as it was. I am nauseous, but not as much. I am hoping that by next week I will be in better shape. That perhaps the inflammation in my lungs will subside. That perhaps I can move closer to getting back to the cancer normal I am used to. Where I have the cancer, but I can live my life.
The last few months have been tough. Basically being in pain or feeling sick every day. And knowing that cancer continues to strip away parts of my life.
I am guessing scuba diving is gone, but take solace in the amount of dives I was able to do and the photos and video I was able to shoot. That travel is going to be limited compared to what I did. That cancer stole too many days of me shooting baseball this year. Which makes me sad more than angry. And I hate feeling sad in all of this. Perhaps music will come back as I heal and can play my guitars again. The big concern is my exercise. I am not sure where that will wind up. I need to get back to it to keep my lungs clear. But right now the most I can hope for is walking a bit without difficulty breathing or having to collapse on a chair or bed. I am guessing my attempt to have a relay for the West Point Triathlon in two weeks is not happening. I need to make sure to get my shirts though.
So right now I am sitting finishing this up and hopping that the severe reactions I have had to the virus is a good sign. The doctor's believe the more severe the reaction means my body will respond better to the treatment. Will see how it goes over the next couple of months as I start getting scans and I have the immunotherapy drugs pumped into me. If it doesn't work, then FOLFOX as one last attempt to stave off the inevitable. Or perhaps another trial opens up.
Images: Dropped about 20 pounds since the start of the drug trial. Some of the lung cancer from recent scan, before any inflammation from drug trial
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| Cancer in lungs before inflammation |
