I didn’t get a chance to update yesterday and honestly don’t feel much like typing today. Yesterday we stayed in, didn’t get out of my jammies most of the day. Eric is sick and we are trying to do lots of hand washing, etc. to keep me from getting sick.
Today was my second chemo session. Mom took me again and it took most of the day. They changed my dosage for the pre-meds and it took almost 3 hours to get the correct meds so we didn’t even get started until after noon. Once the meds did get started it only took a couple hours so at least that’s good.
Accessing the port made me pretty nervous once again. I know it shouldn’t be super intimidating since it’s just going through the skin and into the port, it’s just really hard to wrap my head around that and they are totally jamming a 1″ needle in there so it’s just weird. They used the spray to numb it again and it doesn’t hurt that bad, just kind of like a bee sting as they put it. They had to work a while to get blood to come out which she said happens sometimes. They attach a syringe and just kind of pump it to create suction. It was so strange to have everyone watching for blood to come back, but eventually it did. When they finish using the port each time, they flush it with saline and a blood thinner to keep clots from forming. But sometimes clots will form and they will have to go back in surgically to fix it. Here’s hoping that I never need that. Everyone was relieved when they got blood flowing.
Every week the group who is running the study meets with me to go over EVERYTHING about the week. They are tracking side effects as well as everything else, so we talked for a long time to address anything that could be happening. My main issues during the past week have been fatigue and soreness – area #1 is the spot near my incision which the nurse agreed is most likely a stitch. For now we are watching it. Area #2 is my right shoulder. One of the side effects can be muscle and joint pain so we aren’t sure if it’s actually a side effect or if it’s the muscle getting all out of wack from me compensating for the port. My surgery was two weeks ago and since then, I’ve definitely had to change some habits. I can’t sleep on either side, can’t put my right arm up comfortably (I can reach for something, but that’s about it), and in general have been favoring that side to compensate for the discomfort. My shoulder and neck are not happy. I am taking a lot of ibuprofen and using the heating pad to try and get some relief. At this point, I can’t carry shoulder bags, etc. Bummer.
They cut my pre-meds down by half so hopefully I won’t be up all night again tonight, but I was knocked out again and came home and slept for several hours after the treatment. I am still tired, but last week the Benedryl didn’t wear off until 11:00 or so which is when I started feeling so wired. I guess I will find out in a couple hours if I’m going to be up all night.
Today was treatment #2 of 16. Making progress. During the standard course of treatment (all 3 meds given together every 3 weeks) the body takes a huge hit but then recovers between treatments so that you feel pretty good by the time you go for your next treatment. The way my nurse explained it, during that time the tumor is able to recover too. So it can actually start growing again between weeks 2-3. If you have surgery first, this isn’t usually a problem because they are just trying to get the rogue cancer cells in your body rather than actually attacking the tumor. But since chemo was such a priority for my type of tumor, this trial was very attractive because of the dosing – by getting chemo every week the tumor never gets a break. That’s why they are seeing patients have their cancer completely wiped out before they even go to surgery. Hopefully that will be the case with me too.
On the good side, we got our first meal delivered yesterday and it was great to actually have real food that I could just pop in the oven. Plus, it was a tater tot casserole which I didn’t even know existed. It does, and it is yummy. I got a wonderful package in the mail with fun stuff for me and the kiddos and a care package from a friend here as well. Thank you!!!
I need to get a full picture, but here is me at chemo with my beautiful new quilt.