Cryo-Ablation

Last week I mentioned my upcoming cryo-ablation surgery scheduled for October 22^nd. It’s complete, though the experience was a little more than I bargained for. I checked in at 9am and the admitting and pre-op processes were smooth and well organized. By 11am I was in the OR. I didn’t get a chance to look at the apparatus; I had too many connections (electrodes, IV, etc.) to move around. Then the first blast of anesthesia and it was all over in a minute. Of course it lasted for just over two hours, but the anesthesia makes me feel like no time has passed. I woke up in a recovery room. Everything was fine. I gradually shook off some of the anesthesia and was discharged at 5pm. I stayed groggy and went to bed early.

The surprise came on Friday. Absolute agony. It was so painful it’s hard to describe. Every breath caused a sharp pain that felt like a knife going in between my ribs. But there were no significant wounds. Just a couple of holes near the center of my chest. I was able to medicate the pain down to a tolerable level, but by Saturday morning it was the same agony. I couldn’t move without crying out. I medicated that too. Today, Sunday, things have improved a little more. The problem is that I’ve been completely sedentary and have deconditioned significantly, as most older people do after bedrest.

Where did the pain come from? With a web search I was able to piece together the equipment used and how the procedure is done. Basically, a long cryo-ablation needle does not go straight in. It enters the intercostal muscles that are between the ribs and is pushed at an angle through the muscle until it reaches its destination. It leaves a channel through the muscle, not just a little hole as if it went straight in. In my case there were two needles and each channel was poked twice, leading to further muscle damage. One wound was poked three times, the first being a larger needle used to get a biopsy. Note that this description may be unique to my individual needs. I'm sure that there are many other approaches to cryo-ablation, even specifically on the interior of the chest wall. 

The intercostal muscles are between your ribs and are breathing muscles (along with many other muscles in your upper body). That’s why it hurts when I breathe and when I move even in small way. Ribs are flexible and they move around more than you think. So I went back and looked at my discharge papers, which I reviewed briefly under the influence of morphine when discharged. Sure enough, the pain is expected to last for two or three days. The recommended pain medication is oxycodone and Tylenol. The pain is accompanied by breathlessness due to reduced volume in the chest cavity; the lung is squeezed and cannot fully expand. Fatigue is expected for a week, and the final healing is one to two weeks. It looks like I’m right on schedule.

The doctor who did the procedure said he has multiple clear images that show a favorable result in terms of location and the production of the deadly ice balls. There will be a follow up CT in December and that will be a confirmation of success or failure. But this story isn’t over. There are other suspicious nodules. The two they just froze to death happened to be the ones that were “easy” to get at. The road continues.  

Post Summer Update On Several Things

Since I last posted in April many things have happened and they have mostly been good. Heart problems have been front and center so I’ll start with that.

My heart failure (HF) treatment required three months of total rest starting on January 3^rd and during that time I lost a lot of weight, mostly due to muscle loss. It left me weak. I started to rebuild in the gym, but you know, it’s a long haul. I’ve had “breathlessness” as a problem since 2018 and both of my shoulders have their own problems. I can’t lift a lot of weight and I have to find a pace that keeps me moving without having to stop and catch my breath. Things improved, and I also started to walk again. The big win for me was to start cycling. Even on an e-bike, my first few rides were one or two miles around the neighborhood, and it required the use of a throttle, which kept the bike moving while I rested my legs or went up steep hills. That improved too and I now ride without use of the throttle, with the exception of starting from a dead stop. Year to date I’ve done 30 rides, logging 436 miles, and now I don’t consider it to be a ride unless it’s ten miles minimum. My current goal is 35 rides and 500 miles, but it’s gotten cold and I’m not as tough as I used to be.

We’ve taken our first vacation in two years, driving to Montreal and staying for five days. We were walking 4 or 5 miles every day and it was hard, but it was also an improvement. We’ve had a few other local trips, staying 1 or 2 nights. There was a mid-summer visit to the emergency department of my favorite hospital due to unusual pain in the flank. It was not heart related, but I was stuck there for 12 hours and they would have admitted me if I didn’t fight against it. The cause of the pain was not determined, so I left the hospital with the same problem that sent me there. However, some CT imaging studies showed significant pleural effusion in the left lung. This led to a thoracentesis procedure on week later. About 400ml of fluid was drained from the left lung cavity. I’ll return to this shortly.

While we were sitting in the ED waiting room I spied a mouse running around in the corner of the room. Harmless but unexpected. There was a security guy in full uniform so I told him about it, thinking that the mouse might upset some of the other patients. He summoned a couple of maintenance people and then he got curious while waiting for them. He accumulated a small crowd of fellow employees as he cautiously approached the corner. The mouse appeared! The guy shouted and leapt up onto a chair. One of his colleagues laughed and said there was no danger. Mr. Security said that mice can jump and he didn’t want to be attacked by it. It was pretty funny to see this full grown man in a police uniform dancing around on the furniture to avoid a mouse. Great entertainment for everyone in that end of the waiting room.

Overall the summer was wonderful. I missed the previous summer entirely due to 18 weeks of chemotherapy. This year I had very few summer doctor appointments and was far healthier. Last week I had a follow up echocardiogram and it shows that everything has remained stable since April. This is good news because the result in April showed a huge recovery to “normal.” With the help of a drug regimen, my heart apparently remains mostly normal. My next meeting with the heart doc is in early November.

Now back to the thoracentesis. This was ordered by my mesothelioma doctor. He pointed out that the CT images from the emergency department showed growth of two small spots on the left chest wall. This is the advance of pleural mesothelioma. He recommended a process called cryo-ablation to kill the nodules. He also told me about a small clinical trial that has shown some success with at least one other mesothelioma patient. The treatment is immunotherapy, where DNA is extracted from the patient, modified, amplified, and re-injected. I think this is the future of cancer treatment, so I have tentatively agreed to enter the trial, given that mesothelioma is uncurable and has returned to invade my left lung. This coming Thursday, October 22^nd, both nodules will be biopsied for DNA analysis and then destroyed with cryo-ablation. It’s a low risk, minimally invasive outpatient  procedure, but it happens in the operating room under general anesthesia. The unique operating suite is very high tech. I might post about it next week, assuming all goes well.

Also lurking in the background is stage 4 prostate cancer. This has been treated since 2010 and knocked back repeatedly, but my PSA level is rising once again. The next treatment will be androgen deprivation therapy (ADT), which I have experienced in the past and I have to say, it’s pretty awful. It’s a major downgrade for quality of life. Why treat all of these different cancers, feel like shit, and then die? For now I am not in any treatment, which is rare for someone with stage 4 PC. My oncologist prefers to hold off on treatment and monitor the PSA level every two months to see how quickly it changes. The rationale is that I’ve taken a beating from other cancers and treatments. I still need more time to re-build (something impossible to do on ADT) and to enjoy life. It’s a balancing act based on quality of life, and ADT may become a reality. Time will tell.

Long post, and it’s a lot to absorb.   

 

 

 

 

Cardio Update 2

It’s been two months since my last post and things have changed. The big news is a follow up echocardiogram performed 8 days ago. My ejective fraction was 22% in January. That’s far below the normal range of 50% to 70%. For people like me there is roughly a 66% chance that the heart failure would worsen or just stay the same. Happily, the latest test show that the ejective fraction is now 54%. This puts me in the more favorable 33% of people who might return to some normalcy and die of something else. It’s a huge win! I looked at the full report and it shows that every part of the heart is functioning correctly. The pericardium is normal. There is no sign of thickening of the heart wall. There is no retention of fluid. Arteries and blood vessels are normal. If someone looked at this without the context of heart failure, I think the conclusion would be that I have a normal heart. What niggles at me is that in the beginning, the doc told me I’d never really be well again. I don’t understand the reasons for that. There’s no point in me speculating about heart failure because I’m ignorant about cardiac problems. I’ve chosen to accept the ignorance for now. This relates back to my principle of never telling yourself a bad story (you can get details of how this works from my book). I’ll see the doc again in two weeks and we’ll get this sorted out.

Here is another thing. I track my blood pressure like a day trader tracks the stock market. I enter data into my spreadsheet every day and I made a graph that shows values and acceptable boundaries of BP. There are some excursions, so I made graphs for a three day rolling average and a five day rolling average. They smooth out the excursions and the big picture is good, but there is a trend toward higher BP and I can’t correlate it to anything. I’ve looked at exercise, diet, sleep, and hydration. This is a mystery. I’ll keep measuring and recording data and the doc will see it on my next visit. I’m not very anxious about this but it does keep poking me in the eye twice a day when I measure and record BP.

Cardio Update

 

 

When I left the hospital after the diagnosis of heart failure I left with a large bag of medicine. Seven different types of pills, to be exact. They do different things. One limits atrial fibrillation, another is a diuretic, one is a blood thinner, etc. I have to take these on a schedule. The original schedule made sense. Then the changes started to happen. A drug may be stopped and later restarted again. A different drug may be increased or decreased. Some have to be split in half. It sounds easy but it’s a challenge to keep track of everything, especially if you use a daily pill dispenser. Every time something changes I have to go through that pill dispenser and correct it to reflect the new regimen.

The fundamental problem with my heart is called myopericarditis, an inflammation of the heart and the protective “sack” around the heart called the pericardium. In my case the cause of the myopericarditis is not known. There is a possibility that the drugs from my lymphoma chemotherapy treatment last summer caused this. More likely is that it resulted from a viral infection. In a sense, the cause doesn’t matter because regardless of the cause, the goal is to reduce that inflammation with drugs and then let the heart rest for three months, which requires daily rest and no exercise at all. If everything is successful the abnormal ejection fraction can be increased from 22% to the normal 50% or higher. There is no promise that this will happen, but there is roughly a 33% chance that it will. (As always, statistics do not predict anything for an individual. They are based on a universe of people who are studied under known conditions.) Making it into the top 33% would be a huge win. Of course I would have to stay on some of drugs for the rest of life.

Once home my first challenge was extensive diarrhea. As you probably know, it’s exhausting and irritating and there is no way to replace all of the water that the body loses. The doctor advised stopping one drug, so I did and the problem went away the same day. Things have been normal since. The second challenge was (and still is) to maintain a blood pressure in the correct range. If the BP is too low, dizziness is common and it’s a roll of the dice every time I stand up. The worst case is passing out and hitting the floor. I’ve come close to that. I always look for the nearest place to sit down for an emergency landing. If I’m not at home I need to be ready to just sit on a floor or on the ground. It’s better than falling. It can be embarrassing so you have to keep your ego out of the picture. At the other extreme, high blood pressure means that your heart is working too hard at a time when it should be doing the least amount of work.

The way to keep your BP in the sweet spot is drugs. I’ve been in touch with my doctor several times about this, and each time he’s changed my drugs. To keep track of BP I measure it at home. I created a spreadsheet and then a graph so I can manipulate the data any way I want to. I use my Apple watch to measure other health variables and I discovered an excellent native application for tracking vitals, such as blood pressure. I enter the numbers and it creates a spectacular graph and a table of the numbers. It can easily be exported as a PDF and sent to anyone. I recommend it. It does not require an Apple watch and the BP measured is entered manually (but easily) so you don’t need any special gadgets, except perhaps a home BP measuring device.

At this time I’m into the sweet spot with some minor variations. The data trends up or down depending on the drugs, but we’re zeroing in on it. Now I have permission to exercise lightly for up to 30 minutes per day. For me, this is a very slow walk that does not make my heart pound and some simple exercises with very light weights. This is a far cry from November, when I went to the gym three times a week and actually built muscle and endurance.

A Whole New Problem

In mid-December I posted “You Can Run But You Can’t Hide.” How true. Recently I learned that I have heart failure. It isn’t cancer, but it can be fatal and I’ve already started on a drug regimen that I’ll have to stay on for the rest of my life. According to a cardiologist this type of heart failure follows a 30/30/30 rule. One third of the people will get worse and probably die within a year. Another third of the people will stay the same or have slight improvement. The final third will improve somewhat but rarely back to their original condition.

Now I’m going to back up and explain how this unfolded.

The chemotherapy for diffuse large B-cell non-Hodgkin’s lymphoma is known as R-CHOP. I finished that treatment in September. In October I started to rebuild strength and stamina. It was going well, but in mid-November I noticed that my endurance was fading. All the exercises took longer. I didn’t think much about it. In December I noticed changes in my sleeping heart rate. Over the course of a night there were times when my HR was low and times when my HR was normal. On the night of January 3^rd 2026 I woke up several times gasping for breath. This is something like sleep apnea and it wasn’t new to me given my abnormal breathing experiences related to mesothelioma. In the morning I had two notifications from my Apple watch. The first notice said my HR was below 40 for ten minutes. The second notice said the same thing a half hour later. When I woke up I web-searched this and learned that a HR of 40 means you should go to an emergency room. The HR and breathing difficulties made me think that I might be having a heart attack, so off to the ER I went. I was seen immediately and tested for HR, blood pressure, and abnormal heart activity. All three were well beyond normal but there was no evidence of a heart attack. I thought I would just go home, but instead I was admitted for observation. I stayed five days and had dozens of tests, including a CT, echocardiogram, and cardiac MRI. It was the echocardiogram that delivered the bad news. My ventricular ejection fraction measured 22%, whereas normal would be 55%. The diagnosis is heart failure. 

This has been a devastating experience. I’m not permitted to do any exercise at all for the next three months and I’m rapidly deconditioning. Because I am on a blood thinner I was advised to never ride a bicycle again and to not do anything that may result in a blow to the head. Such a blow could cause a stroke or other brain bleed that would likely do permanent damage. Now my main activity is sitting around and doing nothing. Prostate cancer and mesothelioma are advancing. This is a bad situation. I don’t have much more to say right now.

 

You Can Run But You Can’t Hide

In my last post I mentioned an upcoming CT as part of the surveillance for mesothelioma. The scan showed two nodules in the intercostal areas on the left side of my chest. My mesothelioma doctor said that they are indeed mesothelioma. They are too small and dangerous to treat at this time (dangerous in the sense that treating them now may do more harm than good). We’ll look at them again in six months. If they don’t change everything is good. If they do change we’ll need to formulate a new plan. On the plus side, the mesothelioma in my abdomen and right pleural cavity have been treated and there is no sign of recurrence at either location, even after many years. What’s next? Better not to ask, right?

 

Two Months Of Recovery

I’ve had a couple of months to recover from chemotherapy and things are a lot better. My appetite has returned. I’ve gained weight and recovered some muscle mass just from daily physical activity. I no longer get dizzy and feel like I’m about to fall over. My endurance has improved. I can stand and drive and sit at a table normally. I can ride my bike farther. I can ride my motorcycle. My hair is slowly returning. Neuropathy is almost completely gone. Cognitive fuzziness is in retreat. I generally feel better and my attitude is far better.  

Six weeks after the last treatment I had a follow up appointment with my lymphoma doctor and he said that the treatment was successful. There is absolutely no sign of lymphoma in my body. This is not uncommon for this type of lymphoma, but it’s still a huge win. This will be followed up every three months to look for changes.

I was dreading the follow up with my oncologist who treats my prostate cancer. I was taking an unpleasant drug early in 2025 and had to stop it for several reasons. I assumed that I would have to take that drug again. Imagine my surprise when the doctor said he does not want to resume treatment and would prefer to watch my PSA levels to monitor for changes. There is a valid rationale for this that applies in my case. Of course things might change and I may have to go back on the drug, but for now I am free to re-build and recover and live a little more normally. The prostate cancer will also be watched with blood tests every three months.

In spite of this good news I am not off the hook. Later this week I’ll have a CT scan and then see my mesothelioma doctor for a follow up. Mesothelioma is an incurable disease. It is thought to be two different diseases depending on where it is in the body. I have it in both locations. It’s been treated with good success but it’s never gone. The trick is to keep an eye on it and attempt to treat any spread of the disease. This is a six month follow up, but timing can change depending on test results.

In January I’ll see my dermatologist. I’ve had a lot of skin problems and right now I have a proliferation of basal cell carcinoma on my arms and face. It’s not clear how or whether this can be treated.

My analogy for this is military. I have been deployed multiple times and been in battle every time. Sometimes a battle concludes and I move on to other deployments, only to be re-deployed to a place where I fought years ago. This will eventually end with retirement or being KIA. No one can possibly know. On the other hand, there is an old saying that goes something like this: Beware the old soldier; there’s a reason he’s old.

 

 

  

 

 

 

Almost Three Weeks After Infusion #6

Some happy experiences. 

Several days ago we had a new garage door installed and I was forced to move my motorcycle to make workspace in the garage. Due to overall weakness I haven’t ridden the moto since early spring. I thought about riding it up the driveway but decided to get a friend to do it for me. The next day, when it was time to put it back, I woke up from a nap and thought, I can do this. With total confidence I started the moto and rode it back into the garage, complete with the tricky K-turn on a sloped surface necessary to back into the garage. Major win! I felt great for being able to do that. For those who correctly believe that motorcycles are dangerous, there is one thing you can do to reduce your chance of a fatal accident by 50%. Do not drink alcohol and ride. Zero alcohol, not even one drop. This comes from data collected and analyzed in the biggest study of motorcycle safety ever done. There are a couple of other things you can do to reduce your risk even further. Speed discipline and following distance are key. I won’t explain that here but hit me up if you want to know more.

One cool morning I was out for a slow walk and decided to try jogging. I jogged 15 paces and returned to a walk. A few minutes later I jogged 20 paces and then recovered by sitting on a bench. What got into me? I am neither a runner nor a jogger. I think my drive to expand my box is fully internalized, because I had no plan to jog. I paid for the effort later with a long stint on the couch, but it was worth it. This reminds me of the old joke about the guy who asked his doctor, “Will I be able to play the piano after the surgery?” The doctor says yes and the patient says, “Good, because I’ve never been able to play the piano. 

 I'm looking forward to improved health and more happy experiences.  

 

Infusion #6 The Final Infusion

The final infusion was Monday, September 15^th. It was awful. The whole experience was awful. I wanted to post about it but I just couldn’t bring myself to even think about it. It triggered some weird form of PTSD that I haven’t been able to deal with yet. For now I’m blocking it all out and finding other things to think about and stay occupied with. I’ll be back soon with something different.  

Infusion #5 Results And Future

Just a quick update. Several days ago I had my 5^th infusion and now have only one more to go on September 15^th. The side effects of this treatment are grinding me into the ground and I generally feel awful, but I do occasionally have good moments and I try to take advantage of them. The great news is that the most recent blood tests show that every single thing is moving in the right direction. There is a good chance of achieving remission.

I can’t say that I’m eager to have one more infusion, but I’m eager to put this whole thing behind me. Unfortunately I’ll have to go back to treating the prostate cancer when I’ve recovered sufficiently from the chemo. I had to interrupt the prostate treatment because it wasn’t possible to treat both cancers at the same time.

In the small world of sedentary life, mostly at home, things shrink. Small things become important. What comes in the mail today? This thing needs to be moved, or I don’t like how those books are piled up. When is yard waste day, this week or next week? And then there is the endless talk about managing side effects, which drugs do what, etc. We talk about travel and things we would like to do, but they’re pushed out to the indefinite future, and I’ve been grappling with the constant shortness of breath since 2018, when my right lung became non-functional. On the bright side, there is my amazing wife who has nursed me and stuck with me through every crisis and all things big and small. She is a super-hero. I’m pretty sure I wouldn’t be alive to write this if it weren’t for her.

 

Exciting And Exceptional

Just a few days ago I said that I wouldn’t be updating this blog very often unless something exciting or exceptional happens. I must be jinxed. On Saturday I went to the emergency room due to excruciating pain in my left lower abdomen. It was awful. Sweat was pouring off of me. My breathing rate and heart rate were up. I thought I was going to die. The ER knew that I was coming and I was lucky to be prioritized. It took multiple doses of morphine and dilaudid to make the pain go away.

The problem turned out to be a kidney stone. Apparently it burst free from the kidney and is now traveling and making its way to the bladder, so I have not expelled it yet. At 3mm it’s a relatively small stone and the consensus among the urologists was to let it pass on its own rather than intervene with a more invasive approach or even ultrasound. We’ll see how this goes. The hope is that it will pass easily, leaving me with nothing more than a burning sensation.

The modern ER at my hospital is different from what I thought it was. First off, it’s huge, and it’s not obvious to hospital visitors how big it is unless they see it for themselves. It has only one public entrance. Other entrances and exits are so discrete you wouldn’t even notice them. They look like closet doors and are accessible only to staff.

Second, the ER serves more as a gateway than a place where people are treated. It’s a triage system. If a patient entered the ER with a gunshot wound they would get a quick evaluation and go directly to surgery. The ER does not have the ability to perform significant surgical procedures. They can take care of smaller problems, such as stitching up a small wound or prescribing drugs for various ailments. But if you entered with a broken finger you might wait a long time to see a doctor or nurse, and at best they’d splint the finger and set you up with an orthopedic appointment. In my case they had a good idea of what was wrong with me. They confirmed it with a CT scan and discharged me by the end of the day. And yes, I have a future appointment with a urologist.

Infusion #3 And The Slowdown Of Blog Posts

Hello loyal blog readers. I have not updated this blog for quite some time. There is not a lot to report. Things are dragging on and getting more difficult, which is expected as chemotherapy treatment progresses. Because of this, I won’t be updating this blog very often unless something exciting or exceptional happens. Otherwise I’d just be telling you the same old thing and giving you the same old details. I'm looking forward to making a comeback sometime this autumn, at which point I'll get back into posting about other cancer issues that lie ahead. Thanks for your patience. Your support means a lot to me.

 

Infusion #2 Complete And Some Good News

 

I did not have a lot of happy things to say in my last blog post, but there is now some good news to report. First, I noticed in the middle of last week that I was feeling pretty good. The best way to summarize it without getting into the weeds is to say that I felt better than I did before the first treatment started. It’s a huge win. Blood tests between infusions #1 and #2 indicated positive trends, but last week I really felt it and took advantage of it with some fun social events and a trip to Gloucester for a late breakfast at the Beauport Hotel. The Beauport has a spectacular deck overlooking the harbor. The only thing between that deck and the water (which is crystal clear) is a sandy beach. The cool fog burned off as we enjoyed an excellent meal with a friend who was able to join us at a moment’s notice.

 

Infusion day goes like this. The first thing I do on arrival is get some blood drawn and have vital signs checked. The test results show up about 30 minutes later. Next I see a doctor or nurse practitioner and review everything that’s been happening. They ask a lot of questions and they review the blood tests. Yesterday’s tests showed improvement in everything measured. The doc turned around the computer screen around and said, “You see this? This indicates cancer in your blood a month ago. It’s way over the threshold. Now look at where you’re at today. There is virtually no detectable cancer in your blood. This treatment is working very well for you.” We talked about a few other things and then he sent me to another room for the infusion. Another big win!

 

My first infusion did not go well. My body reacted strongly to the immunotherapy drug called Rituxan. Part of that has to do with the many cancer cells that are destroyed by Rituxan almost immediately. These cells release cytokines that can cause inflammation and other potential problems, such as the rigors that I experienced. Yesterday was different. I did a lot of pre-medication with antihistamines, prednisone, and cortisone. The combination of these drugs and the fact that there were far fewer cancer cells to destroy lead to infusion #2 going smoothly with no problems. Yet another big win! It was a long day, but I had a comfortable recliner next to a window with a great view of the Charles River basin.

 

At the moment I do not feel great, probably because of the massive doses of the pre-medication drugs. But I do have enough energy to move around and do normal things and my appetite is still intact. The post infusion crash will start in a day or a few days and I’ll be miserable, but maybe not as miserable as after the first infusion. I went into the second infusion stronger than the first. And finally, there are couple of other good things that happened. My weight loss stabilized and it appears that I might be gaining weight back. I also started to go back to the gym and exercise the atrophied muscles in my legs and parts of my upper body. I don’t think I’ve re-built anything yet, but those muscles are re-activated. The effort leaves me knackered but only for the rest of the day.

 

I think that without treatment the lymphoma would have killed in maybe 6 months. It dawned on me that it might be time to die, treatment or no treatment. Now I see that things are turning around and I have a fighting chance. I still have a lot of hurdles, but for now I’ll take the wins.      

You Won't Know Unless You Try

About two weeks after the first infusion on June 11th I started to feel better. Note that "feeling better" is not the same as "feeling great," but my appetite had improved and I was eating a lot. I felt so good that I decided to go out for a short bike ride on my e-bike. From the minute I rolled down the street I could feel my overall weakness. I decided to keep going. I rode at the highest power setting but it wasn't just leg strength. My problem was all of the muscles needed to stay in position on a bicycle. Arms forward, bent at the waist, chin up. It all requires muscles. I suffered through the five mile ride and stopped a couple of times. I couldn't wait to get home, and when I did I was so exhausted that I left all of my bike stuff laying around the garage (I never do that, I'm super organized) and went inside to sit down. What a relief. I thought a couple of hours of recuperation was all I needed, but that didn't work. The next two days felt like a setback to the days directly after the infusion. I lost my appetite and I was super fatigued. On Friday I tried to trim my beard, which requires standing at the bathroom sink, and I just couldn't stand up long enough. I tried three times and then finally succeeded with my fourth effort. By Saturday my appetite was back and I felt more energetic. I went out for an easy one mile walk. Today I am feeling that walk in my legs. I hope to rally later in the day for another walk.

In February of 2024 I wrote about getting boxed in by overlapping problems. When things go wrong and you're unable to execute activities that keep you on the path to your best possible health outcome, your box shrinks. Conversely, the more things you can do, the bigger your box gets. My box is real tight right now, so I pushed the envelope by cycling, a passion for me, and overdid it. It's always been this way for me. If I don't push I don't know what my box size could be and I may be lingering in a tight box (and off the path to best outcome) unnecessarily. It's trial and error. 

Things are disappointing right now. I may not be able to rebuild or even maintain what little strength I have until after the R-CHOP treatment is completed in September. From there it will be a very long road to get back to where I was a year ago.  

Follow Up Between Infusions

 

Yesterday, June 9^th, I had a meeting with an NP who works on the lymphoma team that’s treating me. First up was a blood draw and then the meeting. We looked at the blood test results and they were all quite good. After just one infusion, everything is moving in the right direction. That means that the drugs are working. Great news! It’s now thirteen days after that infusion and I feel a lot better. My appetite has returned and I’m eating a lot. Of course many of the long term side effects from the R-CHOP infusion are still with me, and same for the daily maintenance drugs. Chasing them is tricky because there is a not yet a pattern to predict what’s coming next. That should improve after the next infusion, and certainly the third infusion.

In my last post I mentioned the uncontrollable shaking caused by the immunotherapy drug, Rituxin. The NP said that this is a fairly common response for the first dose and it may not happen again, or at least not as severely. I’ll also pre-medicate before the next dose. I don’t understand the science behind this yet so I’ll have to take her word for it. This next dose is also expected to go slowly, but at least leave enough time for the other drugs on the same day. If there are no problems they’ll speed up administration of the Rituxin on the remaining infusions.

So it’s weird. You can feel a little better because you’ve already knocked back some of the symptoms of the disease before the therapy started (and I have/had a lot of symptoms). You feel this mostly at the end of the infusion cycle, after the worst impact of the drugs (when you’re on the couch and feeling totally awful). But you know that all of the remaining infusions will grind you down. It will be a challenging summer. The final infusion is scheduled for September 15^th, then the long period of recovery begins.

The First Day Of Chemotherapy Treatment

 

My first infusion as part of my R-CHOP treatment happened on Wednesday, May 28, and it did not go well. There are four drugs that are part of the infusion. Rituxin, an immunotherapy drug, was the first. It’s administered slowly to see how the patient responds. I did not respond well. Part of that is related to disabilities from other diseases. If a nurse asks about breathing and pressure on my chest, I have to say yes, I have pressure on my chest. They stop the drug immediately and a team comes in to investigate the issue. I had to explain that pressure on my chest has been coming and going since 2018 and if I feel it today, I don’t know if it’s the drug or my “new normal.” They re-started the drug at slower rate. Then two hours later I began to shake uncontrollably. Far worse than shivering. It was endless muscle contractions all over my body and very frightening. The team showed up and a nurse practitioner took control, administering a number of drugs, including the narcotic, Demerol. I  was completely wrapped in hot blankets and there was also pain in my lower back. Gradually the shaking stopped and a while later the back pain went away. Finally they re-started the flow of Rituxin. This is how it went all day. The infusion of Rituxin was finally finished at 7pm, which left no time for the other drugs. I was in the hospital for almost 12 hours. I had to come back the next day for the other three drugs. That took about 4 hours. It was grueling but I felt OK. I had a big lunch and took a walk. Then the side effects started to kick in and this morning I was constipated and felt awful. No appetite.

When I last posted about R-CHOP I didn’t realize that the regimen requires daily doses of other drugs. I’m taking 4 drugs every day and will have to do a self-injection once during each 3 week cycle. That comes tomorrow. All of the drugs have their purposes and they all have their own side effects, often overlapping with each other. Hence the constipation, which I have taken care of.

Today I’ve already had two calls from the infusion team. They’re checking up on me and there is some chance that they may want me back. We’ll see. In any case, I like my doctors, I like the entire team, and I am so grateful for the nurse practitioner who stopped the shaking.  

R-CHOP

Yesterday was my first visit with my new lymphoma specialist. He told me that the standard of care treatment is wildly successful for people with B-cell non-Hodgkin’s lymphoma. About 85% of patients go into full remission. This treatment is called R-CHOP. After your first infusion you wait 21 days for the next infusion, for a total of six cycles, which means roughly 4 months. The doc told me that severe side effects are rare, the more common side effects being fatigue and maybe loss of appetite. Most patients do not even vomit. A port is not required, the infusions will be given intravenously. The treatment is personalized for the patient, taking into account age, weight, health, other illnesses, etc. This is a glitch for me due to other competing cancers. This new doc will confer with my prostate cancer oncologist and the surgeon who handled my mesothelioma. He wants to make sure that there are no conflicts that would put me in danger. That great thing is that all of these doctors know each other.

Years ago I asked another surgeon if I could move away from Boston and still get healthcare from another prestigious hospital. He said I could move, of course, but the network of doctors I have here would be difficult to duplicate. I believe this is true.

I anticipate that the chemo will start in early or mid-June. Three things have to happen before it starts. First is the conference of doctors. Second is a virtual meeting between me and the lymphoma team pharmacist. Third is an echocardiogram. The earliest date for the echo is May 27^th, but that may be moved up if there are any cancellations.  

I think I can power my way through this treatment. As I’ve said elsewhere, you should never tell yourself a bad story. Always tell yourself a good story. I feel better with a good story. No need to worry about things that you can’t control and may not happen anyway.   

 

Lymphoma Is The Winner!

My spleen endured some abuse back on April 18, when it was biopsied and four cores were extracted. It’s an easy procedure for the patient, especially when sedated. The only downside is that I spent 6 hours in the hospital from arrival to departure. The procedure took 40 minutes, but the check in protocol, preparation protocol, and recovery protocol all take time. While I was being discharged the nurse told me that test results would take a week or two. We went home and waited for the results.

The first to arrive was flow cytometry, then cytogenetics, then anatomic pathology. These are challenging to read for me, but I got a call on Friday saying that the overall diagnosis is B-cell non-Hodgkin’s lymphoma, most likely with diffuse large B-cell lymphoma. Some of the results were atypical, which is common for patients with a BAP-1 mutation. I was referred to the lymphoma center at MGB and I expect I’ll get a call on Monday to set up my first appointment. They’ll probably do a few more tests and then create a chemotherapy program. Blah. This is likely to consume at least 4 months of treatment, so I’ll miss out on summer fun. On the plus side, treatment may relieve the many symptoms that make me miserable every day.

In my book, which you can easily download (please do, and share it widely) from my web site, I mention that I have juggled 8 different types of cancer over the years. The number just increased to nine. Prostate cancer is now in a race with lymphoma and I’m pretty sure that those cancers cannot be treated at the same time. Then there is mesothelioma lurking in the back room, but under control at the moment. I have to think about building a good attitude for the coming months, but at the moment it looks like a battlefield.  

Moments Of Beauty

 

On a recent Friday my wife and I went to Brigham & Women’s Hospital for a follow up visit with my doc at the pulmonary clinic. Many of the patients are older and not always in great shape. While I was in line to check in at the waiting room, an older fellow eased his way in, moving slowly. Thin, casually dressed, good hat. He looked at me and I said, “Good morning, how are you today?” He smiled and we had a short conversation. He told me why he was there and I was amazed that that man is still alive. I said, “Well, it's not over, is it?” He replied, “I’ll never give up.” I was called in first and as I was leaving the waiting room he said, with a great smile, “Good luck to you buddy.” I said, “You too man.” I’ve noticed that guys like us know each other without knowing each other. B&W is a busy hospital. The halls are crowded with people, and then you see a guy and you know. There is eye contact, a nod or a word. It is such a wonderful moment. Good will between strangers, acknowledgement, a soul bump. I hope they feel it too.

As we left the hospital and navigated our way through the underground garage, we heard a man singing. Sabine recognized the melody and started to whistle. They harmonized their way through the song. Music is the universal language.   

 

Narrowing Down The Focus To The Spleen

 

A lot of test results came in this week, including analysis of the pleural effusion fluid that was drained from my chest cavity and a careful review of a full body PET/CT. I discussed all of this with my doctor yesterday.

1.    The pleural effusion in my left lung showed signs of mesothelioma cells. My doctor, one of the top mesothelioma doctors in the world, did not show great concern. In all of the recent imaging, there is no sign of disease spread. At this time there is nothing to treat, no lesions or nodules, so the strategy is ongoing surveillance. He also assured me that there are ways to treat any emergence of mesothelioma if caught early without damaging the actual lung. Phew, that’s a big load off my mind.

2.   The right lung is stable. For several years there has been a small pleural effusion and it has now cleared on its own.

3.   With the exception of the spleen, my abdomen is clear of anything that looks remotely cancerous; liver, pancreas, kidneys; all clear. This too is another big load off my mind.

4.   The question now is: What’s going on with the spleen? My doctor has never seen anything like this. His dedicated radiology team cannot come to a conclusion. Lesions of the spleen are “not favored” for mesothelioma, prostate cancer, or lymphoma, given the data that we now have. Nonetheless, due to my BAP1 mutation I am more likely to develop new cancers than the average person. My doctor is a logical thinker and troubleshooter, just like I am. He said that he can’t move forward with 80% confidence, he needs 100% confidence or as close to that as he can get. I agree. So the next step is a biopsy of the spleen. It’s an outpatient procedure and I expect that it will be scheduled very soon.

There is a hodgepodge of other things. I’m mildly anemic due to low hemoglobin, low hematocrit, and low iron. I’m on an iron supplement, and the blood metrics should sort themselves out now that I’ve stopped taking the prostate cancer drug. I’ve lost some weight, mostly muscle, and some appetite. Now suddenly I have the appetite of a horse. We’ll see if this lasts. I still have some dizzy moments that force me to sit down. No explanation for that.

After visiting the doctor yesterday, I came home and had a huge lunch. An hour later I went out for a short bike ride. Unlike other recent rides, it did not destroy me and I was up and moving around doing useful things after a short rest (the kind of rest that every cyclist takes after a ride). Then I ate a huge meal and collapsed in front the TV for a Netflix session.

So here I am, possibly bottomed out and on the road to improvement, but still with a mysterious spleen issue. The spleen problem can range from deadly to benign, so I am seriously looking forward to the biopsy. The prostate cancer problem is on the back burner for now. One last note; I could add a lot more detail and technical information. It would make this post really long, but if anyone has questions and wants to reach out to me, I’ll do my best to answer those questions.