To get to the point, the main lesson I’ve learned so far this month has been that, when you’re fighting for your life, you cannot let down your guard for even a minute. I was so consumed with the battle with Dr. B to avoid surgery (see previous “My Birthday” blog post) that I let the dosing of my chemo slide. I didn’t ignore it, I was concerned enough to mention the issue to Dr. A, but I told him I would leave it to him and didn’t make an issue of it.
Historically, the problem with Treanda (bendamustine) has been dosing, too much and it’s very toxic and too little, it doesn’t do what it’s supposed to do. I got it in combination with Rituxan, the monoclonal antibody that I’ve responded to very well three times in the past. [See this website
I think history will show I got too much Treanda. A few hours after the second dose, it felt like a truck had hit me -- a big truck. It turned out the Treanda had worked too well too fast. It resulted in three outcomes:
- First, a condition called tumor lysis, where the drug breaks up the tumors so quickly it overwhelms the kidneys, the organ responsible with getting rid of the waste products of the cellular holocaust.
- But second, that meant the destruction of most of the tumors, including those, at least in theory, that were blocking the lymphatic system and preventing the healing of my leg.
- And last and least, all those swollen lymph nodes weighed something. So the silver lining in this cloud is that my weight is down. Officially, I weighed in at less than 100 kilos for the first time at Dr. A’s and my scale at home recorded 211.2 lbs yesterday. That’s down 121 lbs since my all-time heaviest and just 31 lbs away from my goal. The end of that project is in sight. I can now see the end, as well as my toes.
Last week, after a few days of living in a fog, I was taken by ambulance from the NYU Cancer Clinic to the NYU Tisch Medical Center a few blocks away. A blood test had revealed my blood levels had gotten way out of hand and Dr. A used the opportunity to get me in a confined situation to 1) see what was happening to my blood (2) get a infection expert to take a look at my leg wound and (3) get a complete workup on me.
I fought the idea as hard as I could but I knew it was necessary. As it turned out, my worst fears about hospitalization would be nothing compared to the actual experience. As I said, I wasn’t the best of patients. But despite the best efforts of many dedicated professionals, the hospital nearly claimed a victory.
I don’t want to dwell on the nightmare of hospitalization right now, but I do have to thank those who helped me escape as quickly as I did. First of all, my sister Joan, who was there every day. And the Tisch family, who came to my aid and got me a private room in their hospital. But most of all, I need to thank my beautiful, wonderful wife. Marcia made the call to Mrs. Tisch and she was at my side as much as was humanly possible, bringing me edible food and a touch of sanity. But mostly, she gave me her love, which was something, everything, I needed to live.
I also now realize how much I’ve come to depend on some of the medical professionals in my life. First, my NYUCCC nurse Tara, who cared enough to send her husband, an NYU doctor, to visit me the first night in the hospital and make sure I was alright. And Dr. K, who visited me in the hospital when she didn’t have to. And Dr. S, who called me everyday. And Dr. A’s nurse, the amazing Bridget, who visited me on her DAY OFF and ended up changing my dressing when the wound specialist didn’t show up. And Dr. A’s receptionist Ellen, who calmed me down so often (too often) and found him in minutes when I needed him. And Dr. A himself, who has learned to listen to me and who finally agreed with me that as a patient, I was “a pain in the ass.”
Well, I’m home now after the closest scrape I’ve ever had with the great beyond. My blood chemistry still screwed up and I’ve had to have two additional units of blood to replenish my red blood cells (in addition to two units of whole blood I got in the hospital) and find out tomorrow morning if I need more. But it’s obvious now that I’m going to be around for awhile longer and will have lots of opportunities to make a general pain in the ass of myself. But I’m a lot lighter and more maneuverable now, so watch your step.
One more thing, during my first chemo session, I got a phone call from Dr. B (see the same earlier “My Birthday” posting). He called to apologize for “what you had to go through.” He said because of my letter, he realized he had to “make a lot of changes” to his practice which, he said “has gotten away from me” and forced him “to take a look at how we operate from top to bottom.”
Amazing!
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