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 And It’s Not Good

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.