Dear Friends,

Happy New Year 2024! I wish you and your loved ones many happy and satisfying experiences in the coming year. 

2023 was a year of challenges and changes—the scourge of war, environmental catastrophes, loss of loved ones, political unrest—so many uncertainties, hardships, and losses. But we also witnessed courage, kindness, and optimism, and we learned to adapt and grow. 2024 is a year of possibilities and opportunities, and we have a chance to start anew—in every moment we have the possibility to choose how we experience that singular moment. There’s no right or wrong way to “do it,” but we always are in control of the framing of our experience. We carry the lessons and memories of our past experiences and move forward.

I’m grateful for my family, friends, and community who stood by me and supported me in 2023. They make me feel loved and valued, and give me strength and hope. I’m also thankful for the opportunities and resources that I have access to in 2024. I’m eager to continue playing music, explore new horizons, learn new things, and make a positive impact in the world.

I’ll be “retiring” so to say from the WDR Big Band in January 2025, and I’m cautiously edging towards the future with a feeling of accomplishment (50+ years as a professional musician, 30 years with the WDR Big Band). I won’t be retiring from music, so I’m looking forward to opportunities which will soon present themselves. These thoughts are framed by constantly-changing developments and issues revolving around my illness.

The Medical News:

The upcoming changes in my life-work balance are influenced by the fact that I still carry an incurable disease that is slowly wreaking havoc on my physical well-being and day-to-day activities. I’ve got good news though: The most recent scan from the end of November shows that the recent changes in medication (since August 2023) have had a positive impact on slowing the progression of my Stage-4 metastatic breast cancer. The cancer has from the start (first diagnosis of metastatic cancer was in August 2019) shown a small lung tumor. In the Spring of 2023, the scan showed a progression—four small lung tumors. Due to the change in medications, those tumors are now gone or show up only as scars.

My main physical problems currently are bone metastases and the lung tumors (which now seem to be inactive), plus the side effects of the disease and the treatment. When the doctors saw the progression of the disease last spring, they decided to change the medication to chemotherapy and try to slow or even reverse the progression of the disease—especially the lung tumors, which are more deadly than bone metastases.

Yeah, Chemotherapy!

I started a new line of treatment in August: Capecitabine, which is a classic chemo drug—used now for decades. I had a choice of doing weekly infusions or taking four horse-sized pills twice a day. I chose the pill therapy since that would be more compatible with a schedule of rehearsing and playing gigs. Capecitabine is used to combat HER-2 positive cancers—colon, breast, pancreatic. Inside the body, Capecitabine is converted to 5-fluorouracil (5-FU) through which it acts. The drug goes into the liver, gets changed to 5-FU, and then goes to the cancer area where it ideally poisons the cancer cells, and keeps new cells from growing. It doesn’t get rid of the cancer, but it messes with it just enough, so it doesn’t replicate (my layman’s explanation).

The Capecitabine is complemented by an infusion every three weeks of Bevacizumab (Equidacent). The Beva is not really a first-line treatment for breast cancer—usually it’s prescribed as a treatment for eye problems—but it is also being used for stage-4 cancer patients as an alternative to other treatments. Bevacizumab is a monoclonal antibody that functions as an angiogenesis inhibitor. In simple terms, it keeps blood vessels from growing, which also helps to keep the nasty little tumors from spreading. 

It’s like keeping a group of evil toddlers (the cancer cells that want to spread) locked in a room by confusing them (with the 5-FU) and giving them poison candy (the Beva infusion). Maybe I’m watching too many Netflix horror shows.

I’m not the only one …

One humbling aspect of going every three weeks for an infusion of Beva, plus my continuing infusion of Bisphosphonate (a bone-growth drug), is seeing the other patients in the ward—everyone with different stages of cancer-related problems, everyone sitting in various rooms getting bags and bags of toxic medicines to help fight their disease that might not ever go away.

In November, I had a chemo port installed in my chest. That’s an alternative to having an IV in the vein of the arm or hand. The veins in my arms have started to give in after years of having IVs poked in every few weeks. The port is a catheter which is installed under the skin in the chest on top of the breast plate. There is a bottle cap-sized gadget implanted under the skin which goes into a central vein in the chest, leading directly into the heart. It’s a weird operation (not a big deal…outpatient), but the result is more convenient access to administer IV drugs. The port can stay in place indefinitely.

I have empathy for all those other folks sitting in the IV station—young and old women—everyone dealing with their own personal diagnosis of the countless cancers that might be affecting them. (Remember that I’m in the breast-cancer ward, so I only occasionally run into dudes, although we do comprise a small percentage of breast cancer patients). Usually, the IV station is quiet, with everyone doing their own activities while they let the drip go into the veins. Some have a friend or family member there. My infusions usually take about 1+ hour, which is quick compared to some patients who have four bags attached and will sit for hours. I’m just a two-bagger.

Is doing chemo good news??

Basically, the news is good—the cancer has not progressed since starting chemo. We’ll do another scan in late February to see if the trend is holding. If there is no progression at that time, the doctors have suggested a possible reduction in the dosage of the Capecitabine. That will help with the side effects.

Aaahhh … Side Effects!

The possible side effects with Capecitabine and Bevacizumab yield a long and intimidating list. As I’ve said in previous Caring Bridge posts, a side effect may or may not occur, and a side effect might be terrible or merely annoying.

The main side effects I’ve experienced are:

Extreme tiredness. There is no “tiredness” that I’ve ever experienced that compares to chemo-tired. A complete feeling of exhaustion can come at any time—or not. It’s a random side effect, and it’s hard to know if the disease is causing tiredness, or the drugs. I think it’s a combination of both. 

Nausea. Both Beva and Capecitabine can cause nausea, but it’s mostly the Capecitabine. I must take the drug *exactly* at the right time to keep the correct dosage of drugs flowing on a 24-hour cycle. That means I need to eat immediately before taking the drug. If I mess up the timing, it takes revenge with the pukey feeling. The drug is toxic. I don’t get violently nauseated, but it’s a bit of a drag.

Bone pain. I’ve never experienced pain like “bone pain.” I guess it’s like arthritis, but it occurs everywhere—feet, knees, hips, neck, arms, hands. Pain is an odd companion—like a jerk-friend whom I can’t seem to dodge or ignore. 

Hand and Foot Syndrome. Hand and Foot Syndrome sounds like a minor problem, but it's a very common and sometimes debilitating side effect of Capecitabine which causes the hands and/or feet to break out, crack, blister, and feel pain. This is problematic, because as a bassist my whole performance and existence revolves around the hands and skin functioning well. I estimate that in a four-hour rehearsal, I hit a metal or metal-wrapped string over a hundred-thousand times with my bare fingers. My estimate depends on how fast the tunes are, how “busy” my parts are, and how many breaks we take.

As any bass player will tell you, blisters and cracked fingers are a huge drag. Since September, I’ve needed to “tape up,” use baby powder on the fingers, use sex gel on the fingers (works great!), and deal with unusually strange cracks, outbreaks, blisters, and inflammation in the hands and fingers. It’s all manageable. Bassists are used to weird hand issues. But these hand issues are off the chain…the revenge of the Capecitabine. If you see me in a video or live concert, and I’m putting baby powder or sex gel on my fingers—you’ll know what’s going on.

Now you have all the current news about my medical situation. I’ll post again if there are any major changes after the next scan in February. Until then, keep swinging—and have a great start to 2024!

John

PS>  I’ve got a new album out—just dropped yesterday. In the true spirit of DIY promotion, I’ll share the link with you here, which you can share with all of your music-loving friends! That will help my download stats on the streaming services. I won't let a little bit of cancer stop my marketing efforts to share this great music with you!

Swim for Your Life