Medical Adventures #9

For Mr. K, who never misses a beat.

October 2023: The Path Forward

When the results from the heart and bone marrow biopsy came back I received a call setting me up for an appointment with an oncologist the very next Monday at 7:00 a.m. Yes, a cancer doctor. The treatment for amyloidosis is very similar to the treatment for multiple myeloma. I would be treated in the multiple myeloma clinic. That made me a little nervous. It was getting harder and harder to deny what was happening in my body. Now I would be one of those people referring to “my oncologist.” I didn’t like it.

However, I did like Dr. Oncologist. All the doctors and other medical personnel made this disease so much easier to take. They were so nice! And kind. And respectful. 

Dr. Oncologist explained to me that there are different types of amyloidosis, and the one I have is “AL amyloidosis,” or “amyloid light chain amyloidosis.” It is a misfolding of certain proteins. In your body you have lambda proteins, kappa proteins, gamma proteins, and other types. Sounds like a frat house in there! And, as in a frat house, mischief may occur. In my case there were too many misfolding lambda proteins. They were swimming all around my body looking for a place to land. They decided my heart and kidneys looked like promising territory. So they moved in.* Unfortunately, that was bad news for my heart and kidneys, whose function declined. 

Dr. Oncology explained the treatment. It was only in 2021 that this treatment was approved, and here we were in 2023. In medical research terms it was like the day after. The therapy consisted of chemotherapy once a week for six months to get my body to stop overproducing the protein, plus a shot of something called Daratumumab during that time, plus 18 more months of Daratumumab to make sure the overproduction didn’t start up again. Yes, treatment would last two years. I nearly fell out of my chair. This would be a long haul.

This is what the weekly treatment** included:

Daratumumab – This gloms on to the cells causing the problem and tells them to knock it off. This was administered as a shot in my stomach. The syringe was about 150 feet long. 

Bortezomib – This kills abnormal plasma cells, by blocking the actions of big guys called proteasomes. I don’t know what those are, either. This also was administered as a shot in my stomach. On the other side. This syringe was slightly shorter. 

Dexamethasone – This is a steroid that helps the other drugs work better. It also keeps you up all night and messes with your mood. This came in pill form. 

Cyclophosphamide – This interferes with the growth of cancer cells. And other bad boys, I guess. Another name for this is Cytoxan. As the name implies, it is toxic. It came in a bottle, inside a thick plastic bag, inside another thick plastic bag. Skull and Crossbones City. Nurse Oncology told me that if I sweated and wiped the sweat off with a towel, I should throw the towel in the laundry immediately and not let anyone else near it, that’s how bad this stuff was. I sucked down nine pills of this each week.

This combination of drugs is called Dara-CyBorD. Sounds like a techno-funk band, don’t you think?

Furosemide – This is a diuretic, necessary because of my heart failure and possible retention of fluid from the dexamethasone. 

Acyclovir – Because some of the chemotherapy drugs cause suppression of my immune system, I might get shingles, even though I have been vaccinated. Acyclovir prevents me from getting shingles (and other viruses, I presume). 

Ondansetron – This prevents nausea and vomiting from all the rather unpleasant stuff being injected and swallowed and otherwise consumed. 

Benadryl – This was just in the beginning, to help my body stand up to said disagreeable matter. 

Tylenol – See Benadryl. 

I started reading about all the side effects of these drugs, but it brought me down. What was I gonna do, tell Dr. Oncology I don’t want them? I would just have to suck it up. 

But there’s one more thing – when I told my dentist I was undergoing chemotherapy he told me that that could be hard on my teeth, so he prescribed a high fluoride toothpaste for me. Wow, my teeth were the last things I was thinking about. I was touched. 

They also gave me a notebook with fun facts about cancer and therapy and a refrigerator magnet with contact information for the oncology department. No t-shirt, though. 

Okay, now I was on the path to treatment. I wanted to begin as soon as possible. One thing, though, Mr. K and I had tickets to see Patty Smith in Kingston, New York. I figured I could start my treatment and go up the next day. Dr. Oncology talked me out of it. “Starting one week later won’t hurt anything. You go to New York and have a good time.” Smart doctor.

We had missed Patty Smith when she came to our area a few months earlier because we were travelling. She was getting older, and now here I was with this bad medical condition, so we figured we’d better catch her while we can. We booked a small house near the theater, planning to walk over before the show. 

A day before we were about to leave I received a message from Ms. Host. Ms. Host told me that her dog walker had been out with her dog, and they were sprayed by a skunk. They went into the rental house, and now the whole house smelled like skunk, and she was sure I would want to cancel. Crazy, right? So I cancelled and asked for my money back. She told me I had to contact Booking.com to get it back. So I reserved a hotel room and contacted Booking.com. And guess what, they told me they couldn’t give my money back because I was the one who cancelled. What? Ms. Host was so clever! I sent them the email from Ms. Host. They gave me the money back from the house – plus the additional bucks it cost for the hotel. Go Booking.com!

So that was a funny little start to our adventure. We had a great time in New York. We walked over the Hudson River, toured the home of Franklin and Eleanor Roosevelt and Eleanor Roosevelt’s home, both in Hyde Park, ate some great meals in some really cool diners, and of course, saw Patty Smith. It was a great trip!

Now the moment of truth was upon me. I had all the prescriptions filled, read all my instructions, plus Dr. Oncology and Nurse Oncology also explained everything to me. I was as ready as I would ever be.

On the morning of The Big Day I spread out the pile of drugs that I needed to take before I got to the hospital. Geez, for someone who never even used to take an aspirin for a headache this sure was a big change. I gulped everything down and we were on our way.

At the hospital they gave me the two shots, then had me wait around a while to see if I had any bad side effects. Surprisingly I felt fine. If this is chemotherapy, bring all of it on so I can get it over with!

* Not her exact words.

**This does not constitute a list of exact medical definitions. 

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