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.

 

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.