It's been a while since I've posted any health updates, mainly because I don't want this to become a "cancer blog" and let's face it, cancer is a major downer and you all came here to read stuff about lovely Paris! Which, except for the dog poo and the air pollution and the "love" locks and the high cost of living, is still quite lovely.
But I'm sure some of you have been wondering how I'm doing since starting chemo.
First, the good news:
- no hair loss (yippee!)
- no nausea or upset stomach (another yippee!)
- no diarrhea (I hate even typing that word, so it's a yippee trifecta!)
I've had some fatigue, but less than I had expected; about every other day I might take a nap, depending on what's going on and if I had a lot of activity the day before. But otherwise I'm sleeping relatively well and am not as fatigued as I was post-surgery, so it could be worse.
There have, however, been some side effects. The main one was my mouth. About 4 days into the treatment, the tip of my tongue felt like I had scalded it on a hot drink, so I thought, "Well, maybe I DID scald it" and I waited for a day or two to see if the feeling would go away. Nope, not so lucky. Mouth pain and soreness is one of the most common side effects, as well as change in the taste of food or even loss of taste. I got some of that too. After about a week, if I even ate something like oatmeal it felt like someone was scraping the insides of my mouth (tongue, inner cheeks, gums) with sandpaper. Last week, I had lunch out with a friend and realized I could no longer eat steak or any sort of food where I had to chew it a lot; it just hurt too much and certain sauces or spices "burned" my tongue. I have been using the prescription mouthwash liberally during the past few weeks, just to get some relief, and for the past week have mostly been on a juice and yogurt diet. Not good.
Then, just last week the day before my latest oncologist check-up, my surgical scar suddenly decided to seep in one spot, and it hurts again in that spot, too, whereas it had been completely healed weeks earlier. Also last week, I took my blood pressure here at home and discovered a big jump in the numbers; elevated BP is a known side effect so that one I was at least prepared for. I contacted my primary care doctor about the BP (this is under his jurisdiction) and he asked me to track it and keep records for a few days and to come and see him on Saturday. But the scar thing was an unexpected concern.
When I reported in to the oncologist last week, overall he was very pleased with my tolerance for this drug; my lab results were all OK, and the problem with the mouth, scar and BP were all "known and manageable side effects" as far as he was concerned. The BP thing, I am working out with my other doctor, as well as treating the scar. But obviously, I could not continue to go without eating properly.
So here's what we're doing: he gave me a week off the drug, effective immediately, to give my mouth and scar some time to rest and heal; and then I will go back on the chemo, but at a lower dosage. The only catch is that at the higher dose, I could take it for 4 weeks and then get 2 weeks "off", but at the lower dose I will have to take it continuously with no breaks until he tells me to stop. The cancer-fighting effects are the same regardless of which of the two methods we do, but obviously the higher dose was a little too high for me.
I'll be starting back on the medication at the end of this week. My mouth is already much better and although there is still a bit of pain at the tip of my tongue, my taste is improved and I was even able to eat an actual cheeseburger in a restaurant today while out with a friend, like a normal person! And it even tasted pretty good! Hopefully my mouth will still be OK once I restart the medication, no other side effects will get in the way, and we can just keep moving forward. The one thing I do NOT want is to have to change medications and start all over again, because of side effects, before we even have a chance to get through the first 3 full months.
My morale has mostly been good, but I have had some low days, or sometimes it's only low moments on some days. I don't always feel like going out, even though I'm physically capable of going out. I'm having trouble motivating myself to get writing (even blogging), but I'm hoping that won't last long. I did pick up an idea from a friend about "coloriage" which is the French for coloring books, only these are for adults. I went out found a huge book full of things to color as art therapy, and some colored pencils and colored markers. I used to love coloring as a kid, and it is very therapeutic to have something creative to focus on, even if it's not writing at the moment. It gets me away from the computer for a little while each day, too.
Although sometimes the art therapy leaves me cross-eyed, like THIS one:
After coloring just that much, I had to go and lie down with my eyes closed for 20 minutes because the room was spinning. Now I am doing just one "fan" section at a time, and then I go and work on a different image that is less visually taxing. And if you think I could just choose to NOT FINISH this one, then you don't know me AT ALL! I'm cute, funny and lovable, but sometimes I am a stubborn twat. Ask my mother.
I often feel like I am in a state of limbo, "waiting" for something, and of course that something is to see how I tolerate the chemo and how things will go over the long haul. A cancer diagnosis automatically pitches you right into the Great Unknown, and there's nothing you can do about it. I am still navigating the waters of being a cancer patient, something I still haven't fully accepted. I don't like it when people feel sorry for me; I like to think I'm my own version of Wonder Woman and am strong enough to take anything. Of course, that's not reality, and I'm only human. I could wax philosophical about how "everything happens for a reason" and I do truly believe this. But then there is this less spiritual part of me that says "Well, fuck THAT, this wasn't supposed to happen and I'M NOT A FUCKING CANCER PATIENT!" And THAT girl is frigging pissed off as hell some days.
Luckily I have a very loving and understanding husband, who I am trying very hard not to neglect when so much of what goes on around here lately revolves around me. It's tough to be the caretaker or partner of someone with a serious illness, and I never want to lose sight of the fact that I'm not the only one who is affected by this, who has fears and who is sometimes suffering or worried. We are in this thing together, it's not just about me. I am just so fortunate that I hit the love jackpot on the day I met Georges. When you stand up together and say "in sickness and in health", you never expect the sickness part, but sometimes that's what you end up with.
If I'm doing well most days, if my spirits are better than even I expected, it's in large part because of Georges and how well he takes care of me and how much he loves me. And on those days when things aren't so great, we just love each other even more, and we get through it - together.