This is going to be long. I have not posted things in a bit. I do not have pain today. At worst, maybe a bit of soreness. It is strange to write these words, because I have been in pain pretty much every day since the spring of 2020.
I may have been in pain longer, but I know 2020 was really bad. It may have been from the chemotherapy - Lonsurf - that I was on at that time. I recall screaming, crying and cursing so much that I expected the neighbors would call the police. Particularly because there was usually a major outburst of pain at some point in the early morning hours. Crawling into the shower after taking a double dose of painkillers. Trying desperately to find any position that could reduce the pain in any manner. Waiting for the drugs to take effect.
Once I was done with Lonsurf, the pain levels came down. But during 2021 it was still there. It was a challenge to get up to Yale for treatment. Sometimes, if I had to drive myself, I would get a hotel the night before. A round trip in one day was too difficult.
The pain became worse towards the end of 2021. It was becoming problematic by December. By the first week of April, 2022 the pain was out of control. They discovered why - the tumors in my spine, and my psoas, had become active again and had a growth spurt. The lung tumors were also growing quickly. Breathing became more difficult and I began to cough up more blood. The pain had to be addressed, so I went for spine surgery.
Obviously there is pain following back surgery. It took a couple of weeks - and an extreme pain crisis where I begged to be let out of a moving car so I could walk to MSK because I was in so much pain - to get the pain killers dialed in.
Not pain free. But enough to keep things so I would not be screaming. That I could watch TV. That I could sleep for a few hours. 50 microgram fentanyl patches. 10 mg of Oxycodone every 4 hours. 10 mg of Baclofen every 8 hours. Keeping track of the time, to the minute, to take the pills because going over would set me back. Sometimes cheating by 15 or 30 minutes, because 4 hours was often too long to wait as the pain increased.
I had radiation, which presented a couple of issues. Then moved into my 4th drug trial. More issues. Then things started changing in August. I was able to space the pills out further and further. Eventually it was at the point where I was taking 10 mg of Baclofen and 10 mg of Oxycodone once a day. Or once every other day. Still had pain, but the fentanyl patch and the occasional pills kept things in control.
On September 15, I started triathlon training again. Biking, running and even some swimming. The objective metrics which I rely on to gauge my health were improving. I would finish the workouts and feel fine.
I also decided to take guitar lessons. It had been a long time since I last had lessons. I always liked practicing and sitting in front of a metronome. I figured it would help with concentration, particularly with being a bit beat up by all the chemotherapy, drug trials and surgeries the last few years. After a lesson or two I was back to into the groove - no pun meant. I was finally able to hold a guitar again. Time would pass quickly as I ran scales and exercises. If I was tired, I would sit down to do 10-15 minutes, just to do something, and then realize 45 minutes or an hour passed. The exercises, which tripped me up to start, would become muscle memory. Different movements across the fretboard become more natural.
I had a telemedicine call with my pain management doctor. I was excited. Even though I had a couple of instances where there was more pain, overall I was in such good condition that I was ready to drop the fentanyl from 50 micrograms to 25 micrograms. We were both pretty happy.
I also arranged to start physical therapy. The last piece of the puzzle in recovery.
I was back to normal. I was able to drive without much pain. I was able to make a road trip to Pennsylvania to photograph the Atlantic League Championship. I was photographing local sports. I drove up to Beacon to see Tim Motzer play and take some photos. Things were good.
But the 25 micrograms did not last long. After about 10 days of trying, I was uncomfortable and was taking pills more often. Moved the fentanyl back to 50 micrograms and the pills went down. By my birthday my pain was increasing. On October 22, I did a triathlon training session. Turns out it was last one I have done to date.
By Halloween, it was questionable whether I would be able to hand out candy. Fortunately, I was in fairly good shape that day. But the pain kept on increasing. I was back to taking the pills more often. Back to the 4 hour Oxycodone routine. The pain was still within the realm of control, for the most part, by the time I went to my PT assessment on November 2. I was hopeful. But the pain kept increasing. I still tried to do things. Had a chance to photograph some NY Boulders things. Roy White, one of my favorite Yankees of all times, spoke at Boulders stadium. Then I had a chance to photograph the kickball league that the Boulders have, though I was a bit more sore the end of that night.
By November 9 the Oxycodone was increased to 15 milligrams. But the pain kept on increasing. I was back to cursing and crawling into the shower from time to time.
When I was waiting for my second PT appointment, I was pacing up and down the halls of MSK. When the physical therapist came out, they asked me how bad was my pain was on the 1-10 scale. I said "I guess a 2 or 3." Apparently since I have been dealing with this so long, that I have no real idea on what is the proper number. They told me, that based on what they saw, it had to be a 7 or 8. People do not behave the way I was behaving without the pain being up the scale. Made it through the PT session. And then within a few days, the Oxycodone increased to 20 milligrams.
We cancelled plans for Thanksgiving and other events. The thought of me having a pain break through event while my niece and nephews were around was not a good scenario.
I am not sure I can accurately write how bad this was.
I spent hours walking in circles, trying to outpace the pain. Movement seemed to help. Sitting or standing in one place made things worse. Cursing. Whimpering. Crying. Even the most mundane or routine thing would cause incredible pain.
My time was spent waiting for the next time I could take my drugs and then waiting for them to kick in. "Can I pop some now? Are they working yet?" Rinse and repeat. I came close to calling 911 many times. But I knew there was not much that can be done. If I was going to the hospital, I would go to MSK in the City. Take extra painkillers and have someone drive me in. No need to tie up 911.
There were continuous trips to the shower, rocking back and forth on on a chair we put in after my surgery, hoping the hot water and drugs would provide relief. Repeating things over in the bizarre mantras I have mentioned before. "Please make this stop," to no one in particular. "F--k this s--t," a bit more targeted to the overall situation. "F--k you," which was often to both the cancer and to myself. I hated conceding anything to cancer, having any thought that cancer was "winning" and was admonishing myself for that thought. Than admonishing myself for thinking that my pain was not that bad and I was just being "weak." Then to admonish myself for thinking I was weak. And, of course, to express my thoughts to cancer, as if it would understand. It is amazing what can go through your mind.
As the days of pain continued, I started to look carefully at the number of pills and patches I had left. Sometimes the insurance company side of things can delay prescriptions. I had a visceral fear that I would run out of pain killers due to a delay. I could not even imagine how bad the pain would be without pain killers based on how I was feeling with them.
I was also questioning why I bothered going through everything this year. If this was going to be what the rest of my life was going to be like, I was not that interested in continuing.
One thing I held onto - based on timing of the drugs, namely when the Oxycodone and Baclofen lined up, I would have about an hour or two of feeling okay. I clung to that. Knowing that there would be a couple of hours every 8 where I would be almost okay.
I also clung to the things that I did during my respite of September to October, and that I would be able to get back to that. I wanted to see my friends and family again. But I settled for posts on social media where there were often things that made me smile.
I had an appointment with my pain doctor the day before Thanksgiving. Once again I did not think the pain was that bad. I did circles around the exam room. I tried to sit in the exam chair when the Nurse Practitioner came in, but couldn't. I continued my circles. I was able to stop long enough so they could check my breathing.
When the NP left, I tried to sit while waiting for the doctor. I kept on getting up, leaving the room and walking up and down the hall while I waited.
I tried to sit when the doctor came in. Instead I had to keep on getting up. Moving. Trying to stretch while holding onto the side of the bench in the room. We discussed whether I should be hospitalized to try to manage the pain to get it under control. I broke down a bit. Saying what I had been thinking - having made it as far as I did, then having it all taken away, was really close to being too much to deal with.
I had a CT scan a few days before I met with the pain doctor, and it showed the cancer was generally stable or shrinking. (I had already guessed that would be the case - my breathing continued to improve. I stopped coughing up any blood. Also my CEA, a tumor marker which has been accurate for me, dropped went from 25 to 8. It had not been in single digits in years. It was up to 38 before I started the drug trial.) There was nothing in the CT scan which indicated the spine or back tumors had changed or would account for my back pain.
I was scheduled to have x-Rays, an MRI and a PET scan during the following 10 days. So we decided to go with wait to see what they showed, while increasing the fentanyl to 100 micrograms.
After a day or so, though the pain was still there, the number of high pain break throughs started to lessen. They pain break throughs also began to become shorter.
The X-Rays and MRI results came back. All the hardware was in place. No breaks or fractures. All the tumors in the spine and psoas were stable. Nothing there which would cause the back pain.
Then the PET scan results came back. Compared to my last PET scan (June, 2021) all the cancer activity had significantly decreased. There was this language in the report: "Resolved retrocrural and retroperitoneal adenopathy." It is what it sounds like. In 2017 the retrocural and retroperitoneal adenopathy was part of the cancer that was "inoperable" and was the impetus for me to start triathlon training. Today it is not active.
My working theory for awhile was that the pain was probably damage from radiation and/or inflammation or pain from the drug trial. Inflammation is part of immunotherapy, and there is not much wiggle room in the areas in my back where I have cancer. A little bit of inflammation can cause more pressure on nerves.
When I spoke to my radiation oncologist a few days ago, he also thought what I was thinking. With the scan results all in, it looks like it is either myocitis from the radiation treatment or part of the response to the immunotherapy drugs.
The timing for myocitis is about right since it often starts a few months after the last radiation treatment. It may resolve in 2-6 months.
As to the drug trial and inflammation, there was one section where there was reduced edema, but it was inconclusive. It may be a bit longer for some inflammation to be seen. Though I have avoided most side effects from all the things I have been taking, muscle pain and spasms have been something that seems to have hit hard. The runner up is being tired. The drug trial adds to it in a special way - I find myself having 12-16 hour sleep days/semi-flu feeling. I think I am seeing a pattern from when I am infused to when I feel that way.
I relayed this information to my pain doctor. We were considering Celebrex, but I may be allergic to it. There was also another muscle relaxer to try. But they did not think it would be much different than the Baclofen.
So we went with Aleve, which is an NSAID. I had to stop taking NSAIDs back in June due to all the blood I was coughing up. But I had forgotten that when the pain doctor mentioned taking Aleve. So I started. And my back felt better. I only remembered I was not to be taking Aleve a couple of days after I started. I will touch base with my doctor. But for now, I am not coughing up much blood. Basically none for the most part. So between excruciating pain or possibly bleeding, not much choice about taking the Aleve in my book.
Now that this writing is all said and done, this whole situation is amazing. My doctors did not think I would survive the summer. My pain was so out of control that they had to do the surgery and radiation, while keeping their fingers crossed the cancer in my lungs would not take me out. Even then my only option was to see if my old chemotherapy would work for a handful of treatments. Then a drug trial opened up. Which is working even better than anyone could imagine.
I am sitting on the couch, watching football, as I type this. Not wanting to scream or cry. No major pain. Almost at the point where I think I want to get on the treadmill or bike trainer, but giving myself a few days to recover a bit more and let inflammation come down more.
One of my doctors has told me that they have never had a patient with the amount of cancer I have and he tells other patients about me. The stats say that only 14% of patients with my cancer and staging make it 4 years.
In less than two weeks it will be the start of the 9th year from when I first received news that "There might be a problem." In two months it will be the start of the 9th year since I had my first surgery. Hoping the 9th year is a bit easier than the 8th 😉. #F--kcancer #iTri4aCure
