Unless you have had cancer and chemotherapy or you’ve been very close to someone that has, you really have a steep learning curve in the early days. Thought I would share some of what I have learned so far.
- The Power Port – most people know that Chemo drugs are harsh toxic drugs – hence the side effects. What I didn’t know is how far medical science has come in understanding how to administer those drugs. The traditional IV in the arm just doesn’t work for long term chemo – the drugs can damage the veins and create problems in the hands and arms. So I have a power port which is an implanted device in my chest that gives direct access to the larger vein right at the heart. The drugs can’t damage the lining of that vein because it’s bigger and the blood moves so fast through it in the heart area. So the drugs get into the system much faster and with less damage. Pretty cool. Except it creates this alien bump on my chest that creeps me out. I kept calling it an alien. Finally Allie suggested I name it. I’m not much on puns, but Dara is and she and her dad really enjoy a good pun. Anyway, I named it Gladys, because in the end, I’m “glad it’s” there. So, meet Gladys. And as seems fitting for the name, I have long stitches sticking out of both sides of the incision so she appears to have whiskers. Lovely.
- The good stuff – before every treatment, you get about 30 minutes of pre-drugs, depending on the chemo drug you are getting. For me, I get Taxol every week, and Carboplatin every 3 weeks and depending on which day it is, I get different pre-drugs. It’s always some combination of anti-nausea meds and anti-allergy meds to prevent problems (Benadryl). So you get in a blissy kind of mode right before the drugs are administered. That’s not bad. But the best part is that those stay in your system for a couple of days. So while you might think chemo day is a bad day, it’s really a couple of days after that it hits because all the pre-meds have worn off. We’ll see if the pattern continues this way for me, but so far, days 3 and 4 are the worst. With Wednesday as my drug day, that makes my weekends heavy downtime.
- Food tastes bad – this one has been tough. I feel full most of the time because of the distended effect from the cancer, but even when I think I’m hungry, the food tastes metallic. Saw a nutritionist at the infusion center who provided us with a lot of tips so again, a lot of good education out there that hopefully will help me make friends with food again. I can’t say I’m not glad about losing some weight but this really wasn’t my idea of how to do that. So far, down 9 lbs in less than a week. Maybe that will be one of the positives that comes from this…
- Right now I can’t travel at all because of a risk of blood clots and risk of infection. I’m stressed about not being the huggy kissy kind of person I am with everyone, but the risk of infection is so high because of what the chemo drugs do to your immune system. So we have hand sanitizer everywhere. And this can be managed, it’s just different.
- Every week you have to have labwork BEFORE they will do the infusion. So I have an appointment every Monday to draw blood (which also comes from the port so no more arm needle sticks) and every Wednesday for infusion.
- I guess every infusion center is different, but I had pictured what you see in movies where it’s a big open room and everyone gets to know each other on your “day”. The Northside center is sort of partitioned off so I don’t know that there will be much in the way of bonding with other patients, but that is yet to be seen. It’s a nice setup though – recliner with a built in table, guest chair (that can use the other recliner table), personal TV, volunteers who bring you snacks, and a super nursing staff. It will be interesting to see if relationships develop with other patients… I have only had 3 out of 27 total treatments (and only 1 of those in the center), so I have so much to learn still. And I like that the bonding is optional – that’s why there are support groups and other avenues.
- I am a research/google junkie. I am the first one to google a condition whenever a friend or family member is diagnosed. This time, surprisingly, I have managed to completely disconnect from doing any of my own research. I don’t know how long I can hold out. I did decide to pick up the book my Dr. wrote on ovarian cancer. That was a bad idea as it’s filled with not great statistics. While I know it doesn’t matter what those statistics say because I’m ME, it’s hard to ignore them. So, how do you draw the line between being educated on your disease and buying into the bad news you come across in that research? I need some help with this one. I hate being in the dark about the disease, but I hate the bad news worse…
- While this clearly isn’t the weight loss program I would have selected, it is a nice part of my day to wake up and see the scale moving in the right direction. I had some unexplained weight gain the last month or so that was directly related to the cancer so it’s encouraging that the drugs are working, and the inability or lack of desire to eat much is also helping. So, I’m 3 weeks in and down 25 lbs. At this rate, I am headed for waif status and will need new torture hose before long.
I have plenty to learn and have my first official appointment with the doctor this week so I hope to become more educated. We’ll see how it goes.