This might be a big rant, but it’s part of that full disclosure thing that I’ve been trying to do.
My new chemo, which started in January, is Taxol. Taxol IS more tolerable, as I was told over and over, but I really like it less than the A/C combo and this is why.
A/C was once every other week for eight weeks total. The pattern was receive drugs Day 1. Days 2-4 were yucky days, with nausea, headaches, body aches and just general blech (that’s a medical term if you didn’t know). But it would get noticeably better each day. By the time we hit Day 5, I was usually fully functioning and able to continue for the remaining 9 days. So the cycle was built with a body break.
Taxol is Every. Single. Damn. Week.
Day 1 (Mondays) I get chemo. I receive fluids, Benadryl, steroids and Taxol. Sometimes something else for heartburn. Each of these is given through my port by IV. Often, my port is not behaving. We have to first draw blood from my port to test my white count and lots of other things before we start the chemo. My port likes to clog. A lot. So we shoot a little Heparin into it to loosen it up. (Heparin is a blood thinner.) Then I am usually asked to stand up, jump a little, move my head in circles (because the port is in my neck) and this is the point in the exercise where I start looking for the hidden camera. Yep. It’s pretty funny watching me contort in order to bleed. Nurse M. has been renamed the Port Whisperer, because she can usually make it obey. And it will. Eventually. But not before Richard Simmons takes over my body and makes me sweat.
Once the blood is received, we move on to the drips. The Benadryl pretty much knocks me flat. I don’t always sleep, and that’s bad, because I’m usually experiencing legs shakes in place of snores. The chemo takes about 3 hours and there’s no way I’m at work after, so it’s another sick day from work. I get home and sleep for the hours that follow. And then we get to night of Day 1. At that point I’m pretty much awake the rest of the night. And that’s because of the steroids. Steroids are evil. I’m told the steroids are what help prevent allergic reactions to the Taxol, which can be bad, very bad. But the trade off is that for several days I don’t sleep (which causes its own set of problems), I’m flushed all the time, I’m very hot, my brains are scrambled, I can’t hold a thought well, and more.
It eases a little every day, but then by Day 3 or 4 I’m feeling the Taxol. I get low-grade nausea–never chucking, just feeling like nothing is settled in my tummy–and other GI issues that I decline to put into words. For that one day I’m just not feeling good and I’m usually very emotional and can’t hold back the tears, even though there’s no solid reason for my angst. By the weekend I’m feeling pretty normal, but that gives me just two days of break before the next dose. I have eight more weeks of this. Eight. More. Weeks.
When I start feeling sorry for myself, and it’s usually either the day I go in for the chemo or the day it hits me so badly, I remember the many, many people I see in my chemo center who are struggling way more than I am. There are men and women who come in barely walking or in wheelchairs because they are so weak. Their coloring is yellow and their lives are marked by the schedule of scans to find out if their tumors are shrinking or not. They talk about the constant vomiting and exhaustion, about not being able to work or live a semi-normal life. Some of them seem to be alone while they go through this, and that breaks my heart the most. No one should experience a life-threatening illness alone. No one. It makes me think about what I can do when I’m done with this to help others who don’t have the human resources around them for support. I’m mulling it over big time because I can’t picture going through any part of this cancer journey alone.
I am so blessed with amazing family and friends who walk with me over and over in ways big and small. I have never been alone in any of this. I treasure the fact that I can mostly work, that I can take my kid to school and attend her cheer games. I can write and sew and clean my house (stop laughing Stephen!) and cook. I’m functioning close to normal. I look mostly normal, except for the complete absence of hair, which still freaks me out. No eyelashes. No eyebrows. No bikini line. It’s freaky, totally freaky! I’ve gotten used to my plethora of head scarves and beanies. They work well and I’m never without one. Stephen jokingly asked this morning, as we looked at the rainy deluge outside, if I had a waterproof one? Smart ass! And no, I don’t. That’s what hoods are for, I said.
I also know that I won’t have any scans when this is over. As I’ve explained before, this aggresive chemo is really my insurance policy. Because of the multi-focal nature of my cancer (many, many small tumors) the worry is that something might have escaped and that it would be too small to detect, until it latched on somewhere and grew. So the chemo is designed to wipe out all potential harm floating around in my body. There’s nothing to track. Once we’re done, we’re done.
I got sick last week. It could be a flu, or just be that really, really nasty upper respiratory virus circulating very efficiently through our town and my office, but it was bad. With a depleted immune system, I was laid flat for five days. It’s two weeks later and I’m still hacking and not feeling any let up yet. In contrast, I gave it to my husband and he was better in five days. Samantha too. That’s the difference between having an immune system and not. So I get to be extra careful these days. The result of this illness was missing one week of chemo. So the regimen was extended by one week. That’s nerve-wracking. When you’re battling a life-threatening illness, you live for your treatments. You know your treatments are what potentially guarantee your future existence. To miss one or two allows doubt and fear to creep into the scenario. Luckily I was able to continue with chemo this week and Dr. S was not phased at all by the missed week.
Life has definitely settled into a pattern and it’s very livable, if sometimes unpleasant. I know I”ll get through this phase without any hiccups. And then it’s onto reconstruction. That’s my next post. Reconstruction is becoming a bigger and bigger deal here. But I’ll save that for a couple of days.
By the way, my baby turns 16 on Sunday. I can’t express how freaky it is to have a 16-year-old! I feel like I’m still 16 myself many days. And she’s had to grow up so fast this year with all of my crap. I feel like she’s lost some of her innocence and faith in the world, watching me fearfully so many times. Samantha has definitely paid the highest price in stress and worry through this. Stephen of course, but we both have the gift of maturity and experience that allows us the faith to know that this will be okay. Sam doesn’t believe it. She’s always worried about the next emergency. I crave the day she will relax and know that I’m not going anywhere. Because I’m not. At least not from this.