The Good, The Bad and The Ugly
Yesterday was chemo round 34. It always hits me later in the evening, around 7pm. Heavy duty tiredness, to the point where keeping my eyes open is a major effort. I imagine my head like the top of a tree in a storm… moving back and forth erratically, but my body remains motionless. Just the top being pushed around at will. But there’s minimal nausea, which is nice.
So far things are going along as they should. I’m still receiving treatment, Erbitux weekly. I still have cancer but I’m not dying. It’s under control… as much as the medical fraternity and modern pharmaceuticals can control it anyway. The Dexamphetamine they give me during the infusion suppresses the majority of the nausea and also makes my skin manageable for the first day or so afterwards. Through the process of elimination I’ve determined that it’s the Dex that settles it down. I mentioned this to my Oncologist and he was happy to prescribe a daily dose in tablet form.
My liver enzyme markers are all down, some back within ‘normal’ tolerances, which is very good. Considering my liver is the only place the cancer still has a hold this is a good sign. My liver is functioning perfectly. My CA19.9 markers are holding steady at 11.1, well within normal, and my CEA markers are bouncing around week to week between 143 and the latest round of 174, which is still good compared to when they were over 4,000. So instead of being four thousand times the safe limit I am now only 174 times the safe limit. It represents a decrease of about 96% since we started on the Erbitux. Unfortunately, instead of decreases of hundreds of points per round, we’re now only seeing decreases in the 5 to 10 point range. Not bad in and of itself, the numbers are still trending in the right direction, but I have a feeling the last 4% is going to be a very hard fought battle. Assuming the math stays the same and it drops by 5 points each time we’re still looking at another 30 or so rounds before I’m safe. Fifteen if it goes down in multiples of ten. *sigh*
I’m still having treatment weekly. It’s really starting to get me down. There just doesn’t seem to be any end in sight. We’re locked firmly in that dreaded holding pattern with very little room to move. All I can do is keep showing up for treatment, keep looking for new ways to manage the pain and irritation on my skin and just… keep knocking on heaven’s door. I’m feeling particularly low this week, and last week, as I have managed to pick up a case of shingles. Apparently once you have chicken pox a form of the virus stays in your body for life, hiding itself in the nerve ends in your spine. It usually only manifests itself if the body is run down or the immune system is less than stellar. I qualify on both counts. Shingles, as anyone who has had them will attest, is incredibly painful.
My Oncologist has offered me daily doses of Dex for my skin. The Dex really brings out the worst in me, more so after 18 months worth. Given that Mr Hyde spends far too much time in our house as it is already, I have refused the offer. I just can’t do it to Rach and the boys. As much as I desperately want relief from the burning and the itching and the pain…. I can’t do it. I don’t imagine for one second that any of this is anywhere near tolerable for Rachel. I’m not the man she married, that’s for sure. Just how bad it is for her I don’t quite know yet. Cody is starting to become aware in his own way that something isn’t quite right and the other night while putting Jakob to bed, he grabbed my face with both hands, pulled me in close so we were nose to nose, looked me in the eye and said “Yooouu…. Go. See. Da doctor.” Then he kissed me and rolled over.
So…. no Dex tablets.
I hate having to look into the mirror. I see red, blotchy skin and swollen eyes. I see a torso covered in spots, a stomach with a stoma and colostomy bag, spotty arms and legs and feet with no feeling and a permanent sensation of pins and needles. I have never really been overly concerned with how I look. I think I gave up on that once I realised I was going bald, around the age of 20 or so. Nothing I could do about it so why fight it. At the time I was dating a girl who didn’t seem to mind (or at least she never told me if she did) and Rachel has never known me with hair… I’ve always done the Peter Garret in the time she’s known me. In fact, I think she actually prefers me bald than with hair.
But my self image is under massive pressure. I really can’t stand to look at myself. I get looks walking down the street and never know if it’s because maybe someone has recognised me from Oprah or the various TV and print media stories or whether they’re looking at me in horror… like some kind of mutant. I fully expect the mutant response because that’s how I view myself. But… like I said, this is war and there are casualties along the way. I guess my ego needs a bullet or two.
Anyway… that’s where I’m at right now. I get distracted easily so my ability to uphold any kind of decent conversation is limited. This includes conversations with God. I get quite frustrated that I can’t sustain any kind of meaningful prayer with him, it really bugs me. But it’s times like this I just go back to the last thing he said to me….
“I am the LORD your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you.”
I know I’m still on his radar. So is Rachel. So is Cody. So is Jakob.
I firmly believe the time will come when I am safe from this disease. My healing has been sent… it’s travelling… and at the appointed time, I will arrive in the same place at the same time as my healing.
In the meantime…. it’s back into the trenches.