First let me say I am sorry for the delay in posting for the last 10 days. To say it’s been a difficult ride would be an understatement. I probably got a little to confident after my first round thinking it wouldn’t be too bad only to have the second round be an ass kicker. Lots to review so lets take the Hot Tub Time Machine (great movie btw) back to two Wednesday’s a go and recap.

I had mentioned in a previous post the concept of an IV port where they put a small receptacle inside the chest that has a tube running to my heart (photos below) in order to make it easier to both infuse and draw from the bloodstream. On Wednesday the 7th I went in to Dana Farber to have that port installed. It’s actually much more of a procedure than I figured as it does require sedation (twilight level) and also no food or drink prior. My surgery wasn’t scheduled until 1pm that day so I hadn’t eaten anything since the night before. Like most procedures, lots of tests leading up to the actual event. Aimee was traveling that day so my parents kindly picked me up and took me to the procedure and waited patiently while I went through pre-op, op, and post-op.

Overall it was really easy. Didn’t feel a thing. I did have a “40 year old virgin” chest shaving (not waxing) moment. I asked for a design but the nurse was less than willing to comply. Overall the day went fine, that said I made one critical error. I thought that I was ready to leave and let the nurse know I was good to go. Unfortunately that was not the case. The ride home was absolutely miserable. I was dizzy, nauseous and just felt horrible. I can only imagine how my poor parents felt seeing me that way. My dad even said I left to soon and he was right but at that point there was nothing I could do. We made it home, I ran to the bathroom, vomited, and then went straight to bed, only to wake about five hours later feeling much better. And now I have a port.

Thursday the 8th was the first day of my second cycle and once again my dad decided to accompany me for the days events. The first day of the cycle is generally the easiest and the fastest so figured it was a good day for him to come. I told him about all the free snacks which I think was the selling feature of the day. They used the port for the first time which felt a little odd (getting a needle in the chest, just a puncture through the skin) but did not hurt, just a different feeling than the arm. Truthfully, not much to report in terms of Day 1 Cycle 2. The infusion went smooth, all my blood counts were perfect and the team was amazing as usual.

And then there was Friday. That’s when the shit started getting real. The infusion itself was pretty straightforward. No real news there. I did notice that with the port I could ‘feel’ the medicine in my system sooner. And what I mean by feel is actually taste it. One of the worst side effects of this four platinum agent course of chemo is the very strong (and lingering) metallic taste it creates. It’s indescribable other than to say it’s absolutely miserable. As soon as the first agent hit my bloodstream and I mean literally as it was passing into my body I could taste the meds. Disgusting! Day 2 of the cycle is the longer of the two days, usually 5 hours, so it’s a day I plan to get a bit more ‘comfortable’ in the chair.

And then it happened. About an hour into the infusion I looked down at my pillow and it was covered in hair….my hair. Literally, as I am sitting getting chemo my hair started to fall out. I’d like to say I was a prepared for this but I was not. I did put on a good act while sitting there and made a few light jokes but this hit me hard….real hard. I know most will say , ‘ you didn’t have much hair to begin with’ or ‘it’s not as bad for guys as it would be for women’ and both statements are absolutely true. But the thing is that it’s not about the hair, it’s about the cancer. My hair is falling out because I have Cancer. Not because I chose to cut it or because I am destined to have a receding hairline, it’s because I have a condition that requires me to take medicine that is literally altering my body. I couldn’t see my Cancer but now I can. This sucks. The rest of the treatment went fine. Preparing once again for the nausea and the fatigue and now the hair loss.

When Aimee and I got home I decided to just shave it off. I don’t really want to look down at my pillow every morning and see large clumps of hair so figured I would just be done with it. Once again, I made it through with humor (and a Mohawk for about 2 minutes) but this really hurts inside. I am not happy, in fact I can’t remember the last time I felt so miserable. This is hard.

I won’t belabor the next 6 days with a play by play. What I will say is that the fatigue and nausea were extreme starting Saturday the 10th all the way through the 16th. Work remained a welcome distraction, but by the end of the day I could barely move. I was in bed and asleep most nights by 730pm. No ability to focus in the evening, sleep was a challenge. Even trying to watch tv was difficult. I just wanted to sit in a chair and stare. This is not who I am. I am tired, sad, and can’t get comfortable anywhere in my own house. I won’t even look in the mirror. My head under my hat is uncomfortable. Everyone is telling me I have a great head and look great and I am sure they all mean it but I don’t see me in the mirror anymore. I don’t feel like the guy who ran the Boston Marathon less than two months ago and is always on the move. I don’t know who this is, I don’t know who I am. All I see is Cancer…

And if all that wasn’t enough, a new surprise side effect reared it’s ugly head this week, mouth and throat sores. Unlike the other side effects, these actually hurt. Not, sip some tea and it will feel better hurt, but feels more like swallowing a sharp piece of glass hurt. This has been going on now for the past five days. I have a few prescriptions that are supposed to help but honestly they last only about an hour. Drinking is hard, eating is hard and sometimes just swallowing is hard but I am managing to push through. I am still eating multiple meals a day, maintaining close to my weight and fighting through the pain. I even recorded a webinar session for work on Friday evening with the pain and don’t think I grimaced even once (at least I hope not)! That was also my bald debut btw.

Anyway, this mouth and throat pain is priority number 1 for me to figure out this next round. Here’s to hoping that this Fathers Day weekend is better before I head back into treatment next week. Stay tuned!