I’ve been all over the place today, unable to hold on to any kind of thought for longer than a few moments. Short little bursts of random ideas, concepts, jokes, and thoughts pop into my brain and then pass on by, unimportant and mostly forgotten moments later. Oh God. I’m Twitter.
Here are some highlights:
I feel as though I should be more upset about this. I mean, I’m not happy, but after taking the day off work and mostly puttering around my house, what I am, mostly, is bored.
There is no good cancer humor on the Internet. I have checked. Is it because it’s really not funny? I am choosing not to believe that.
Xanax: color me intrigued.
Since I’m already bald, will the chemo make the hair in my ears fall out? Because I seriously can’t keep up.
Sally Field would be more upset about this. She’d know how to do a cancer diagnosis.
What will my legacy be? Does everyone get a legacy or is that just for presidents and serial killers?
What the hell is “Red Widow” about? I know I could just go look it up, but shouldn’t the commercials tell me?
If I went through that fucking surgery and gave up my ability to process a greasy cheeseburger and a piece of pizza for nothing, I’m going to be pissed!
I tried to buy strangers ice cream cones yesterday to make myself feel better – random act of kindness type of stuff. No one took me up on it. This is why I, generally speaking, don’t like people.
Zoanette. If you don’t know what that means, just go YouTube her.
Hold music. Waiting rooms. Paperwork. Needles. Machines. Can’t say as I have missed all of this.
It’s been awhile since I have posted. There have been reasons both good and bad for that. Good in that there was nothing particularly noteworthy to talk about other than my ongoing, thrice-daily cage match with food in which I tried to find something to eat that didn’t physically repulse me or twist me in pain as I tried to digest it. Bad in that I felt that talking about it too much would be seen as whiny and ungrateful, which was probably unfair to all of us.
But I have returned, now, because so has the cancer. Actually it was never really gone in the first place, but that is a distinction probably left to the academics at this point. I’ll let you chew on that one for a moment while we take a flashback.
It’s been a little over five months since I last wrote about what was going on with me. I had just gotten the blasted feeding tube (aka: bane of my existence) removed and was cautiously optimistic that things were going to improve. And they did, to a point. I was able to eat more and more often. The pain I experienced after eating diminished in intensity and frequency. My energy level increased, I was able to go back to work, my breathing issues improved, and I was able to sleep, finally.
But then things kind of plateaued and I stopped getting better. It seemed as if I just sort of got stuck, with my digestive system a million times better than it was but nowhere near normal. Dramatic evidence of this was seen on the scale every day. When I went into the hospital, I weighed (an admittedly too heavy) 236 pounds, which I blame on my oncologist (aka: Dr. Wile E. Coyote Super Genius) who told me to gain weight before the surgery because I would lose a lot afterward. When I came out of the hospital, I weighed 205 pounds, a loss of more than 30 pounds for those of you unable to do math quickly in your head. Don’t feel bad, I had to use a calculator to figure it out.
That was September. By October it was 40 pounds. In November it was 50 pounds. By December I stepped on the scale and saw the number 173 come up, a weight I had not weighed since junior high (I was really fat when I was a kid). I had lost a mind-boggling 63 pounds, a full quarter of my pre-surgery body weight.
My life started to revolve around my scale, but in a totally different way than I was used to. For most of my 46 years on the planet, I would step on the scale in the morning and pray that I had lost a pound or two. Now I was praying that I hadn’t. Most days I had.
And food. Food became the enemy. I used to love eating. As we have discussed here, I was an emotional eater. I ate when I was happy, I ate when I was sad, I ate when I was angry, I ate when I was bored. I ate to help me fall asleep, I ate to help me wake up, I ate to keep me distracted from whatever it was that was bothering me, I ate to prove points (to myself and others). I ate before sex to build up my stamina and ate after sex the way some people smoke cigarettes. I’ve eaten during sex, but that’s probably a story for another time. The point is, I ate. But then I didn’t and I couldn’t and often the thought of it made me nauseous and I had to sometimes almost physically force myself to put another bite in my mouth.
My surgeon, Dr. Frenchy, put me on a narcotic that was designed to even things out digestively speaking and it did. The pain diminished even more, I was spending less time in the bathroom, and most importantly I was able to eat without wanting to kill myself every time. The trouble was that the narcotic nature of it turned me into a bit of a zombie and the previous bad stuff was replaced by new bad stuff, like recurring bouts of nausea, which would often start while I was sleeping and get so bad they would wake me up. Fun. It did arrest the weight loss and I didn’t go below 173. As I write this I am all the way up to 175! Woohoo!
I complained to whatever doctor would listen to me and was repeatedly told that this was just part of the recovery – they had basically rewired my entire digestive system and that takes time to sort itself out.
In January I started experiencing new pains, some around my incisions but also some in places that were approximately where my pancreas and liver were. That scared the doctors into moving up the normal 6-month follow-up and the tests started.
A set of blood tests showed that my liver function was off, along with some other anomalies that weren’t there just a couple of months earlier. Then came the CAT scans, which came back “indeterminate.” Finally, another stab at radioactivity (still no spider webs) during a PET scan, the results of which Dr. Wile E. Coyote Super Genius delivered today.
There is a spot on a lymph node near my liver. It was there all along – back when I had the first PET scan and the surgery and the biopsies and everything – it just was so small it couldn’t be seen. Now it’s there, glowing like a little 1.6 cm point of light.
Now, the odds that this spot is the only spot that is hanging around my abdomen are roughly the same as rolling a hard 8 in craps or of me winning this season of American Idol, but that’s all the PET scan could see and therefore that is the theory we are going to operate under for now.
And speaking of operating, that is the next step. I am going to undergo a laparoscopy next Thursday, March 7, at which time Dr. Frenchy will go in, take a little stroll through my guts, and see if he can see anything bad other than that one mischievous little lymph node.
If he can’t, he will remove the lymph node and take biopsies of the surrounding nodes and tissue. Then I will have to undergo an unspecified amount of chemotherapy and radiation in an effort to burn out anything that can’t be seen by the PET scan or the surgeon’s eyes. You know, like the spot that couldn’t be seen 6 months ago.
The survival rate through all this is a bit better than 50% but not much better. Having said that, those are better odds than you usually get at the craps table so I’m willing to roll that particular set of dice.
However. But. Although.
If I don’t roll the hard 8 and Dr. Frenchy does see more spots, he will remove what he can, quietly zip me back up, and that, as they say, will be that.
There is no coming back from that and, according to Dr. Wile E. Coyote Super Genius, I would probably have 3 to 6 months to live if I choose not to have life-extending treatment (ie: chemo and radiation) and maybe as much as a year if I choose to have it, but it probably won’t be a very fun year.
After he told me all this, he hugged me. For future reference, when a doctor, especially an oncologist, hugs you, it’s not good. I mean, it’s good and lovely and exactly what I needed at that moment, but in the grand scheme of things, it probably means something bad is happening, has happened, and/or is about to happen. Get your affairs in order bad. Drunken weekend bad. Eat everything in sight bad, except I can’t do that because of my fucking digestive system. Whatever.
I’m only 10 or so hours into this new reality so it isn’t actually real yet. I’m not sure what I’m feeling other than generally freaked out and more than a little peeved. But Mary taught me a lot about dealing with cancer and most of it boils down this: you deal with it. I could go curl up into a little ball in the corner but I wouldn’t be able to reach the refrigerator or see the TV from there, so really, what’s the point of that. Besides I haven’t vacuumed in a couple of weeks and there are probably dust bunnies and maybe a spider in the corner so, no.
I know you will all be concerned and supportive and send me good thoughts and happy vibes and well-wishes and prayers and all that good stuff and just know that I deeply, deeply appreciate it even if outwardly I, in my typical fashion, try to brush everything off as no big deal. I get this is a big deal, I really do. You know why I know? My boss, who is a lovely man but not someone that you would normally associate with the concept of hugging, hugged me after I told him today. First my oncologist and then my boss. As it was happening I thought, “Geez, what am I, dying?” And then I thought, “Ohhhhh.”
In other words, I’m not fine, but I will be. I’m going to take the day tomorrow to sulk and feel sorry for myself and then on Friday I’ll get on with it. What other choice do I have? I’m not saying there won’t be rending of garments and gnashing of teeth at various times over the next however long this all takes but in between those moments I’ll just be pluckily plugging along like we do.
When Mary’s cancer returned we called it, variously, “Cancer II: Cancer Takes Manhattan” and “Cancer 2: Electric Boogaloo.” When it came back again we named it “Cancer: The Extended Dance Remix.” Since my cancer was never really gone, I won’t call this a sequel. Instead, I’ll simply refer to it as another scene; a new act in the little drama about how food is still trying to kill me.
A place for my travelogues, weird ideas, and random musings.