Sunday, January 27, 2019

Cycle 5 Complete

Cycle five was basically a treatment reboot. New drug administration, new environment, and new side effects. Here's how it all went...

The big difference this cycle was that I had my treatment done through IV rather than orally. This change required me to have my treatment at VCU. I expected it to be cramped at the infusion center since the waiting room is always crowded, but there was a lot of space back there. The nurses were really nice and great about getting my chemo started quickly. Things seemed to move quicker than when I was at Penn which was awesome. We arrived at 7:30 and left at around 12:30. The support services were great too. They had service dogs on two of the days, and a preacher on two days. I appreciated seeing the dogs. They really took my mind off of what was going on for a little while, and put a smile on my face.

The treatment itself was both better and worse than before. The big reason I switched was because of anticipatory nausea. I was getting so sick just taking the meds that I wasn't getting 100% of the drug down and it was getting worse every time. The IV chemo fixed that, and honestly it wouldn't matter if I threw up at the hospital because it's in my veins anyway. Other than the anticipatory nausea and anxiety being essentially eliminated, everything else seemed at least a little bit worse. Fatigue wasn't something I dealt with too much with oral chemo (I was able to work everyday with it), but with IV I became very tired as the week went on. I slept 13-15 hours on most of the days. I also dealt with nausea, and still threw up six times this cycle. It makes me feel a little better knowing that the nausea I dealt with on oral chemo was not all in my head, but also makes me sad that I have been unable to solve the nausea this long. I felt bloated and full from the steroids which caused some of the nausea. They prescribed me Zantac to help with that, and I'm also going to use Healios this cycle. I've mentioned that I was going to try the Healios in prior cycles, but never really gave it a chance because it was triggering my anticipatory nausea. This cycle I'm going to try a new flavor of Helios and stick to it no matter what.


Cycle five was definitely harder than I expected. I planned on being able to go to work in the afternoon of each day, and not really needing my mom to be down here. I never made it to work, and by the end of the week I couldn't even take care of myself. Even though the side effects as a whole were worse I would still much rather IV administration than oral because I wasn't all stressed out. My quality of life improved with IV so I'll take that as a win.

I was very fortunate to have my mom with me for cycle five. She was a real lifesaver, and I would not have been able to get through the week without her. I wish I could take care of myself, but I can't. Hopefully this cycle will be better.

Five Cycles Down, Three To Go!

Sunday, January 6, 2019

Cycle 4 Complete

I start cycle five tomorrow, so here's how cycle four went...

In short, cycle four went horribly. Lots of vomiting. Lots of stress. This might have been my worst cycle of chemo ever. It was bad right from day one. When I took the medicine I used the lidocaine mouthwash first, and then took the chemo with cola. The mouthwash worked great with the pills, but didn't do much with the horrible taste of the Irinotecan. The cola did just as well of a job as the cranberry juice, which is to say not well at all. I got it all down, and then went to bed. A few hours later I woke up and immediately rushed to the bathroom to throw up. I barely made it, but at least I didn't throw up all over the back of my door like I did last cycle when I was home in Pennsylvania. I wasn't even close to making it that time. I went back to bed afterwards, and about an hour later it happened again. And again, and again, and again. I lost count, but I threw up like eight times that night. I felt like I was dying. What was most crazy about it all was that I still managed to make it to work the next day. I felt weak, but the Marinol took away most of the nausea and I was able to be productive. As a side note, I've never smoked or drank in my life so I would have no idea what it feels like to be buzzed/high, but I'm pretty sure the Marinol makes me feel high.

Day one really set the tone for the cycle. The cola and Lidocaine didn't make much of a difference. I had four more days of what has been a struggle since the start. I threw up every day before taking the meds from intense anticipitory nausea. I tried taking the Temozolomide pills, and then taking an hour break before taking the Irinotecan so if I did gag up the medicine then the pills would be already absorbed. That gave me less pressure, but I ended up throwing up before taking the Irinotecan anyway. At least I didn't lose the medicine since it's already absorbed. Luckily I didn't have any more all nighters of throwing up after day one. Just like every other cycle I felt back to normal on Day 8.

I had an appointment with my oncologist last Wednesday and we both agreed that its best to switch to IV administration. My quality of life on the oral regimen was nonexistent. I was stressed out all day on treatment days. All I thought about was the medicine when I had chemo that day. The throwing up in the night was really troubling too. Receiving the medicine in a hospital with nurses keeping a closer eye on me will be much better. My mom is also going to be with me for this cycle. She will be a lot of help driving me to the hospital and being with me while I'm there as well as taking care of me at home. We wanted to take extra care this cycle since its more travel while I'm on the drugs, and also because unforeseen things can come up with a treatment change. I'll decide if I need extra help for cycle six. I'm very grateful that my mom is able to come down to Richmond to be with me this cycle.

There are both pros and cons to switching to IV. I should not have any trouble receiving the medicine by IV. The nausea will be handled better since the nurses will be watching me for hours at the hospital. My stress level will drop by a lot if things go well. The big drawback is the time I will be there. The nurse I spoke with told me it will take 6-7 hours, but my oncologist didn't know how long it would take specifically. He thinks at least a few hours. I start at 7:30 in the morning, so I'm thinking I will be missing at least a half of a day of work. My manager and team don't expect me to be in the office this week, but I'll try to be there if it makes sense. I hate my cancer treatment forcing me out because I'm a hard worker and never miss time. Another downfall of switching to IV is bringing back bad memories of when I received chemo with my initial diagnosis. Although I think what I've gone through with this chemo has been more emotionally scarring than what I was on before, at least in terms of strictly having the drug administered.

I'm obviously very disappointed that I couldn't get through the whole treatment orally, but at least I got through half of it. Like I've mentioned before, I was not taking an oral form of the chemo, I was drinking a drug meant to be injected; two very different things. With the amount of nausea and the side effects I dealt with, it at times felt inhumane. With that said, I feel somewhat proud of myself for making it this far, and I have a lot of confidence that things will go much smoother from here on out.

I hope you all had a wonderful Christmas and New Year's. Below is a photo of me and my brothers on Christmas morning.


Four Cycles Down, Four To Go!