Ray’s Blog

Yesterday was a bad day for me. I spent most of it curled up in a ball in my bed. No energy. I can’t really explain it. Fatigue is a well-known side-effect of chemotherapy but it didn’t hit me until yesterday. The day before when I completed my treatment, I didn’t feel fatigued. I certainly haven’t been performing any great physical feats that would make me fatigued, yet I was. The night before I was restless, couldn’t get comfortable, and was agitated. I kept getting up to pee and couldn’t get uninterrupted sleep. Reminded me of the hospital. So last night to help me sleep I took half a vicodin I had left over from the first spasm - I never did take any of those. more…

Today I successfully completed my first chemotherapy session at home! And by successful I mean finished the pump without disconnecting it and not having any but normal side effects. I’m still not completely out of the woods yet as the 5-FU is still floating around my body but I’m hoping after a good night’s rest, I’ll be alright. I’m not really feeling so well right now. Not terrible but just feeling sick. Again, all of this is still unknown for me. I have no idea how I will be feeling tomorrow or in a few days. And I still carry around my nitroglycerin tablets just in case. Who knows what side effect will hit me and when. more…

I have not had spasm this session. I was completely expecting at around midnight last night that I would be having a spasm and a very severe one - not something I was looking forward to. After sending the kids to bed early Christina and I camped out in the living room to wait it out. We tried not to look at the clock and I tried to distract myself with the internet while Christina worked and watched TV. One of the obsessions I nourished was my new found love of Regina Spektor - WOW! I wasn’t so surprised that I liked her once I found out that she is originally from Russia and spent the second half of her childhood in Riverdale, BX. She’s one of the few artists I actually care to listen to their lyrics. She’s quirky, funny, emotional, raw, poetic, irreverent, playful, and incredibly talented. A good introduction is this interview with Regina on CBS’s Sunday Morning. I must have watched between twenty to thirty videos before I needed to change and we still hadn’t hit midnight. more…

Yesterday was a wonderful day. Great weather to be in New York. Christina, her parents and I went to see the off-Broadway play Beast. I had planned this a little while ago not knowing whether I would be well enough to go but luckily I was. Unlike the last time I took Metro North on my way to Sloan-Kettering, I was feeling strong. Of course, we went to Turks and Frogs first for a great meal. We took advantage of their greatly expanded cold appetizer menu. Everything put in front of us was delicious. Then we took a walk up Canal street and bought a few trinkets while bullying ourselves through the crowds. We reached the New York Theatre Workshop after walking a little uptown for what was to be the last show of Beast’s run. My thinking was they may do something special for the last show or, if anything, they would at least be as seasoned as they ever would be. Well, time for bed now. Chemo session number two is tomorrow. Wish me luck.

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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One of the more interesting events that happened to me while I was in the hospital last week was going through what’s called guided imagery. Basically, you are put into a state of relaxation and given a scene in which you take whatever is paining you and send it away. For Christina and I the scene was our 10-year anniversary trip to Turks Caicos. Our guide asked some questoins, took some notes, then took us both back there. After a few deep breaths there we were - sun, sand, margaritas, clear water, a cool breeze - then a ship anchored itself close to the shore. I took the pain from my abdomen, put it into a box, closed it, put it on the ship, and watched as it sailed away.

Since that initial session, I have successfully used this technique myself twice to essentially think away the pain. It’s amazing really. I short cutted the method last Saturday morning. When I felt a spasm coming on instead of taking my deep breaths and going to the Caribbean, I just said “No motherf*cker,” and that worked just fine. Of course, severe spams will not be overcome by this method, and that may be due to my own inexperience, but for low-level ones, this technique can work. Now this doesn’t mean I should stop taking my medication, but it does mean I have another tool to deal with all of this, and I’m free to apply it to other situations as well.

We completely missed the VP debate while in the hospital since I had more pressing issues on my mind at the time. Politics is really depressing. It’s amazing that there are only two choices. One size, or two in this case, does not fit all. So nothing is perfect and you’re really left with choosing the lesser of two evils. That can be a tough decision. There are stands on the issues which should be the most important part of your decision to ally with one party or another, but in a campaign, they all twist the facts. But what you need to look for are which facts they do, for what purpose and effect, and who is making an honest mistake versus who is intentionally being deceitful.
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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…