You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease
Michael Guglielmucci — "Healer"
We are stretched to make room for wholeness.
Treatments started last week. A week ago today, to be exact. Today marks the beginning of week two. And all in all I can say, so far so good. Obviously I can't make any pronouncements about the entire process at this point. It is, after all, only one week. And the first of several, at that. Everyone involved, including common sense, has said that the first couple weeks will be fairly easy and then it will get tough. But I can claim a bit of comfort that there is now one less week of potential problems, pain, and difficulty. There is an end to these treatments, the potential side effects, and all else that goes along with them. And no matter what the remaining weeks hold, there is now one less week of them to worry about.
The chemo drug I was going to be on had some pretty serious side effects. Besides the ones you always hear about — nausea, fatigue, hair loss — it damages your hearing. Given my already existing hearing loss, the doctor was pretty concerned about that. There was a very real possibility that it could be destroyed altogether. So she recommended trying a different drug. Not technically chemo but a targeted medication. There's a big chance of a reaction during infusion but minimal side effects.
This one gets administered every week instead of every three so it will mean a lot more long days. During the first infusion, I had one small reaction and that was just a really bad case of the chills. We paused it and the chills eventually subsided and, after about a half an hour, we restarted the drug. The rest went OK. No other reaction until midnight. I got a text message, looked at it, put my phone down and got the chills again but they passed without incident. The deal was that, if my body can't tolerate this drug, then we would fall back to the original. I suppose it's better to be deaf and cancer free than to have cancer and be able to hear people talking about it. But today's infusion — dose number two — went without a hitch. We preloaded some meds that they used to help me through it last week and the whole thing went smoothly. That was a great relief. This one still has some side effects but they aren't anywhere near as bad as the other one would have been. Hopefully this will keep going well.
Radiation is five days a week for six weeks. A couple weeks ago they made a mesh form of my head that clamps down onto the bed of the machine. They use that for alignment to make sure the beams are firing at the right places. It's a little hard to turn them around once they've been fired so you pretty much have to get it right. So every day, I lay on the bed and they position the mask back over my head and shoulders and clamp it down. So I end up immobilized in a big CT machine and they shoot high powered x-rays at my head for a few minutes. It makes interesting noises sometimes but usually I just close my eyes and try not to think about how my brain is being cooked from the inside out. I'm just starting to feel the soreness in my throat from it but luckily it's on the opposite side from where I swallow. I'm sure it will get worse in the coming days and weeks but, oh well.
Starting on Monday, I will be working from home. It will be much easier to deal with whatever side effects there are at home than it would be in the office. And I can tailor my diet to my needs rather than trying to find something that I can eat. In fact, that's probably the biggest issue at the moment. I've been losing more weight mostly because I have to eat really small bites and I don't end up eating as much. I'm going to try more, smaller meals during the day rather than a bigger lunch like I would normally have. Additional fringe benefit: I will get to dress comfortably and pump up some music.
You know, I guess I always knew what the hardest part of this would be but it's not always easy to admit it to myself. Even though it's pretty obvious when I give it half a thought, I don't necessarily like to confront it face to face because of the deeper and more persistent truth that it points out. I've been pretty strong through all of this. Some might say too strong. I've been admonished by various people for not leaning on those around me but I have my reasons. First, the support that they offer, while truly generous and heartfelt and offered with the most wonderful and sincere heart, isn't what I need. Mostly they offer food, which I generally can't eat. Some offer transportation which I don't need right now. But mostly it's food. See, I'm trying to do as much for myself as I can simply for the psychological benefit of it. The more I can manage things on my own, the more normal and closer to healthy I feel. That keeps me from just laying down face first in a big puddle of self pity, a trap I can fall into far too quickly if I let myself.
But when you're the strong one all the time, sometimes you just want somebody to hug you and hold your hand and tell you it's all going to be alright — even if it's not. But I don't have anybody to do that. There's nobody in my life who really knows me, who understands how I feel and how I have to process things, who just gives enough of a crap to hold onto me and calm me down when inside I'm falling apart even if I can't show it on the outside. Because I have to be the strong one. And the truth that I have to face is that I may never have that person in my life. That's a bitter pill to swallow.
And then there's the even bigger truth. The lyrics above are from a song we sang in church this past Sunday (video embedded below) which hit me like a ton of bricks because, while I have been paying a lot of lip service to trusting God through all of this, I haven't really been doing it. That's even more bitter to realize.
I have to — I long to — get to a place where I truly can say that He is all I need, that He's more than enough. But I'm not there. I still want that tangible human connection. I want someone to step into my weakness and handle things for a while instead of wanting Him to give me strength so I can handle them for myself. I know all too well that, on my own, I am not nearly sufficient for this challenge. I need the strength and peace that only God can provide to help me through. If there's a prayer to come out of this, it's that I can really immerse myself in Him and in the comfort that He gives.
Enjoy the song.