Ray’s Blog

Most people see me when I’m feeling well enough to be out. That’s not to say that I’m squatting down in a rice patty, dropping a baby, and getting on with it, but I’m functioning at a relatively healthy level. Most who see me say I look good and that’s good for me to hear as well as feel. Some ask why I still have my hair, some wonder how I can work, some surprised ones probably think I’m already dead. The thing is what people don’t see. It’s not quite like an iceberg but you get the idea - when you don’t see me and why you don’t see me is because I look and feel like cancer. And the more I’m on chemotherapy, the more I am cancer. I was told today that my hair looks good, which is good to hear and relative to many cancer patients it’s really true. But my hair has probably thinned by 50% so to ME that’s not so good. And hair will grow back so what’s the big deal but, as a demonstration, to prove that my hair isn’t that good, for a small audience, I grabbed at my beard, gently pulled, then released half a dozen hairs onto a napkin. That’s not normal. That’s cancer. And I have it no matter what I look like.

Yesterday after gloating about how good I was feeling, I had very bad lower back pain during a bowel movement and I was not constipated so stop thinking that. Everything during chemotherapy is strange. The feeling seemed to consume me at one point and even went to my head. So that was bizarre. Never had that before. Only after chemo. Then it happened again later in the evening though not as bad. I found some information about it and it does seem as though this can happen but no doctor warned me about it. I’ll have to ask someone about it. This is just another example of the weirdness that is chemo. You never know what any given day may bring.

There may be a honeymoon period for chemo but all I know is I’m feeling pretty good considering how I’ve heard it could be. Of course I am excluding the fiasco of last week. I’m happy to say that if this is how things go, I should be able to be at the office working six days out of ten every two weeks. And if I haven’t mentioned it yet, two weeks ago and this week I worked the entirety of each on campus instead of at home. That’s a good indicator of how well I am feeling. Lets hope it stays this way for a long time. more…

After having that first spasm in the hospital and not knowing when I would have another one or how bad it would be, I was scared. The scene of that first spasm was pretty severe and it was all a blur. Writhing in pain, nurses swarming around me, waiting for the nitroglycerin tablet to take effect, hoping someone would disconnect the infusion, wondering when it would end, trying to face the pain, people putting on the stickers and leads for an EKG, questions being shouted at me, the whole scene was extremely chaotic. And there were no assurances that this wouldn’t happen again at any given moment. I was on edge.
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Yesterday, at 2:30 am, miraculously, I completed my first chemo treatment. It took a four-day, three-night stay under constant observation at the hospital to do it, but I did it. And not only that but I completed the appropriate, standard treatment. We did not have to deviate from the master plan. There are a few differences now though, the main one being additional medications to dilate my blood vessels which are controlling, but not eliminating, my vasospasms. This is the trade-off. In order to get through the treatment, I have to endure additional pain. The hope is subsequent treatments will be better than this time, but we may not be able to eliminate the vasospasms completely. more…

One more day until the next chemo. Looks like I took my break from thinking about cancer too seriously leading to my missing my oncologist appointment this morning. True it was an early appointment (7:45am) and I was distracted by the power going out, but I just spaced and am not happy about it - nobody is perfect. While in the hospital I’ll be able to see one but I was really lucky to get that appointment on such short notice. Oh well. I spent the day working from home thinking maybe I could get in to see someone today but that didn’t happen. more…

So the plan is in place. Chemotherapy with no change except the venue - the hospital. The only difference is that I am now on a beta blocker which could prevent the vasospasm or it might do nothing at all. Basically, they want to induce the same reaction I had last week but this time they will be recording it as it happens and I will have a bunch of nitroglycerin tablets to suck on so I don’t drop dead on the spot from a heart attack. So I will be hospitalized for the duration of the chemo treatment or two whole days which is what I was hoping for. They theorize I may have vasculitis, and if it is, it’s caused by the 5-FU.

There’s still a lot to talk about. It’s all really up in the air at this point. I could have a reaction or could not. If I have one, it could be better, the same, or worse than what I had last week. They’ll stop the chemo if I have a reaction but then what? It depends on the data they see. There is still a decision to be made here about weighing the risks now versus later. I’m seeing my primary tomorrow to talk about the plan and I will be speaking with a cardiologist before Tuesday to try and get as many minds on this as I can. The goal is to get chemotherapy without dying during it. I think I can pull that off.

The good news is that my oncologist knows what happened to me. The bad news is what it is. It’s what we had suspected, a rare adverse reaction to 5-FU called cardiotoxicity. Although that’s somewhat misleading. Cardiotoxicity actually means heart muscle damage which we don’t believe has occurred in my case but is possible. In fact, you can drop dead from cardiac arrest when given 5-FU. Now we know I am at risk, meaning I can have an adverse reaction again, if I follow the standard chemotherapy treatment, in any form including a heart attack. My dilemma is that I need the chemo to have the best chance for surviving cancer but the treatment could kill me. So we will have to make a choice - risk now for increased survival later or play it safe now and risk having cancer later (later meaning within the next five years). more…

Today was my first full day back at the office. My first attempt yesterday was interrupted with medical appointments as will tomorrow, but today was a complete day back, my first in over seven weeks. My car has been sitting silently all that time and had to be jump started to get me there. As I was driving I could hear a grinding every time the wheels came back around to the place they had been sitting - that’s how long it’s been. more…

I was finally able to speak with my oncologist today. He hadn’t been told what had happened to me until Friday and then he was rounding at the hospital and couldn’t call me. The next time he isn’t there when I have some other emergency, I will insist they get him on the phone. So days of worry and speculation are not quite over but we’re felling much better. It’s alright if I have the first complete chemo treatment at eight weeks and hopefully that will be the case. And the incomplete treatment I had wasn’t worthless. We still don’t know what happened to me or what we will do to change the outcome but Sloan-Kettering will weigh in and Wednesday we’ll come to some conclusion. Anything we chose to do though no matter how sure we are about what happened will be like trial and error. I’m going to push to be observed (which may mean hospitalized) so if something happens again we’re more prepared to find out what it is, because, I do expect it will happen again. Just like everything with this cancer so far, only time will tell.