19: 21 day recap

We did it, one complete cycle down, only 2 more to go, or 14 more individual infusions or 42 days left. The last infusion, if we can keep everything according to plan, is going to be on my Birthday. Its not much, and its trivial, but its kind of given me that beacon at the end of the long dark tunnel. If you look at it like that, it doesn't seem so bad. But from what I experienced over the past 21 days has been something else and this is a good point to go ahead and recap.

Week 1: I thought I was the baddest MF before these infusions started. It only took 4 days to put me in the hospital. The infusions arent bad once you get going, however to get going it usually involves checking into infusion, waiting 30 minutes to get called to get vitals taken, go to your room and get set. Then they access your port, draw some labs. If the labs show you are healthy enough to receive your treatment then you have to wait for them to get the drugs. All in all, its about an hour to an hour an a half to get rolling. 30 minutes of pre hydration, then meds, then 2 hours of chemo then 30 minutes post hydration. If we're lucky we can turn the whole process in 6 hours. As you get into that first week, waking up becomes hard, because your always nauseous. Wake up, take some pills, fight the throw up, take some more pills, maybe eat breakfast and you can start your day. Simple enough when the infusions are at 1030. On my 5 day cycles I have to report by 8. So its up at 0530 to get the day going.

Side effects Week 1: Lets start with my tongue, this was the most shocking for me. You start to feel a coating in your mouth that slowly becomes acid, or something of the like. Your mouth begins to slough off in little bits, your tongue is super sensitive. I woke up one morning with Lady Liberty green hairs covering my whole tongue. It took 3 attempts with an electric toothbrush to even shave off the tiniest little bit of whatever this was. And whatever this was tastes terrible.

My stomach. FFS where to even begin. Everyone knows with chemo basic side effects are nausea and vomiting. Nobody warns you of the side effects of the anti nausea meds, hiccups for me, 2 days straight until we finally got that under control. The cramping, bloating, constipation, heartburn, back pain proved to be the biggest hurdle out of the gate. It took until the end of the 2nd week of treatments to finally get all this manageable, but not under control.

Week 2: Monday we got the Nulasta injection. Again, if I didnt have to schedule my own appointments because the hospital didnt after they discharged me, and we didnt have to wait over an hour past my appointment time, the Nulasta wouldn't have been a terrible experience and its a drug that hopefully minimizes me hitting level 0 with my white counts. Side effects from the Nulasta was some pain at the injection site and bone pain in my pelvis. All of it subsided in a few days, and the pain wasnt unbearable like a 5/10. Tuesday we get just the Bleo infusion and thats pretty quick, the 30 minute infusion gets dragged out over about 2 hours because of everything mentioned above. I was feeling halfway decent that day so again, not terrible. Side effects week 2: The muscle fatigue is real. It felt as if concrete was hardening in my muscles rendering them useless. It was real bad in my arms and when it first happened it was pretty scary. Before cancer, I had 2 speeds, fast and faster, and this didnt jive well with that. Loss of hearing and tinnitus (ringing in your ears) came in at a close second. I felt half deaf and my ears rang like I had been back in the truck running sirens all day. The nausea and vomiting come in third and its my first real bout with vomiting this week. The process takes about 2 hours from start to finish and its miserable, this goes on for 2 days post Bleo. I pull out of the side effects by the weekend and actually can operate as a semi normal human. My labs are even showing normal white counts which is cool.

Week 3: This ones an interesting one. You only go to 1 appointment to get your Bleo this week quick in and out in 2 hours again. We are set up in one of the new rooms, it has a bed, recliner, work station and TV vs the typical broom closet I get shoved in for the 6 hour infusion. You would think there would be some foresight into how patients are placed in which room, but trust me, thats WAY to much to ask of this facility. ( my next infusion they have me in a shared room, which ABSOLUTELY wont happen, but that will be another story for another entry im sure, stay tuned. Its the side effects that got me this week

Side Effects Week 3: My hair is everywhere. I went to itch my beard the other day and a nice patch of about 10 hairs came out, so I knew this was coming, but it doesnt make it any easier. Wednesday morning I woke up on the couch, slept on a white pillow last night. After I wake up and orient myself, I notice a solid dusting of Kristos hair all over the pillow. Mom comes out to make coffee after she hears me moving and asked how everything was going. I just ran my hand through my hair and again, a shocking amount of hair came with it, I think it even shocked her. But it came out of nowhere, here one day, gone tomorrow. The end for my hair is near, I just need to come to terms with it and flick on the trimmers. But right now im not ready, and what little control I can still have over these situations, I'm going to take. The nausea has been well managed by medications because I knew to stay heavy on them after the treatment on Tuesday.

Im working on a 21 day video recap that we can hopefully have edited by the weekend.