Ray’s Blog

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…

I took a break the last couple of days. Needed to stop thinking about cancer all the time. Not that I can really stop completely but I can remove it from the forefront of my mind. The constant research, medical appointments, running through various treatment scenarios, I just needed a somewhat normal weekend for a change. That feeling coincides with the best physical and mental health I’ve had since the surgery. I’ve started doing a few things that I haven’t done in about two months - cleaning the house, doing the bills, taking out the garbage. I even started doing push-ups again although only from the knees. I can really feel my incision when I do them so not a good idea to really overreach on those yet. 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.

Some of what I felt during my first session of chemotherapy:

• Sensitivity to cold in my mouth
• phlegm and coughing while at infusion room (maybe from lunch but exaggerated)
• pain in jaw when chewing at first
• momentary pain in sides when I got up from treatment
• tingling in fingers
• muscle spasms in hands
• Feeling physically and mentally strong from steroids
• post nasal drip
• sneezing
• hungry

more…

After no sleep and reoccurring pain, at 8:30 in the morning we arrived at the cancer center to see what they could do for me and get some explanation as to what happened. Anywhere a deadly disease like cancer is being treated and the treatments occur at frequent, regular intervals, there’s a bonding that occurs between all those present, and a familiarity. Needless to say all who were there were instantly surprised to see me since I wasn’t expected until Thursday. Unfortunately, there were no answers. There was great skepticism that my symptoms had been caused by 5-FU as evidenced by the fact I left with two controlled substances for my symptoms should they continue or intensify, neither of which happened. Pain is not a side effect of chemotherapy. THERE SHOULD BE NO PAIN! Plenty of other things - nausea, fatigue, diarrhea, sensitivity to cold - but not pain. Something is wrong. more…

By early Tuesday afternoon I was leaving the hospital having completed the in-patient stage of my chemotherapy. I was sent home with a portable pump full of 100ml of 5-FU to wear for the next 46 hours. So far, so good. Part of the regimen requires taking a steroid which made me feel invincible; like I could run a marathon. My post-surgical pain melted away and I was feeling better than I had in weeks. There was a downside though. My jaw hurt when I chewed, I was sensitive to cold in my mouth and on my hands, I was coughing and had a runny nose, and my hands were spasming. But, on balance, considering all the drugs that were just injected into me plus the one still going in, I felt pretty good. That would be in stark contrast to what would happen just twelve hours later. more…