Zits. Of course that would be the first sign that I'm actually recovering from chemo.
Life. You are such a practical joker.
I have trouble imagining a nitpicking judgemental old man of a god. But I could believe in a teenager god pulling practical jokes and pranking us. Or perhaps it's a ten year old boy blowing things up and having a good time without really knowing what he is doing. Could be that. These days I could be convinced to believe in a god like that.
Tuesday morning, sitting here in the sun at 9 am. Slept in until 8 am this morning. It's a bit disconcerting to be up so late and to be sitting here writing with full sun beaming down on me. It worried my husband too, he didn't get on with his day until I was up and doing things, doing my usual things. He said he couldn't remember the last time that he got up before me. I do vaguely remember him looking in on me and being relieved/worried that I was still in bed. He's been sleeping in the guest room while he has this terrible cold and is coughing and sneezing half the night, so I guess when he got up and I wasn't sitting in my usual spot in the chair he got worried about where I might be.
What happened to me last night? It was a strange one. I woke up around 3 am, my old AC chemo wake up on account of nausea time but with a headache last night. It was enough of a head ache that I couldn't get back to sleep, but not so much that I was consumed with pain from the headache itself. I remember trying to go back to any of those places that I used to use when waking up from chemo side effects in the night. There was all the nice comfy beds I'd slept in in my life, that was a good one. But I couldn't find any of those places in my mind, my brain wouldn't settle, it wouldn't remember. It was a nice memory being me, simply being me and doing that little mind game, I felt like I couldn't do it any more and I wasn't me any more. And I remember how I felt after playing and completing that video game Myst from the the 1990s, how I felt like my brain has sharpened and become better from doing all those mental puzzles, from spending those weeks of my spare time in that world, listening to that calm sound track, looking at those incredible images and solving puzzles. I was living in Iqaluit at the time, it was winter. It was a really good thing for me to be doing for my brain. But after I solved it, I was only able to hold that improved mental state for so long, then it slipped away again. That's how I felt about the way I survived the AC chemo, those early cycles, staying calm, managing my thoughts, bringing all the inner strength of a healthy me to taking care of me going into chemo.
I've lost that, it's slipped away between now and then. I don't know whether it's the fact that it's just been so long, I've had so much more chemo, it's been a longer time now since I've been a healthy person that I can barely remember it, I can barely remember how to be that person. I don't know whether it's a result of the taxol chemo specifically. It affects your nerves. It's been three months of random nerve pain when I least expect it, where I least expect it, and in places where you don't normally have pain, odd pains that shoot through your body in odd places, extreme pain for a few seconds and then it's gone.
What the heck? Months of that can affect your mind, it can get on your nerves. And then the allergic reaction burns to my skin in the last month. Add that on top of the 8 weeks of random nerve pain, skin burns that hit you when you're minding your own business, just sitting there reading a book or watching tv, at no particular time, for no reason, all of a sudden you feel like you've just burnt yourself. Hit your wrist against the edge of a hot iron, leaned the side of your arm against the hot chimney of a wood stove. It felt exactly like that. And even worse, when you looked at the spot, it was red, it was red exactly as if you had been burned.
What kind of nightmare is that? Who would dream up a nightmare like that? Who would dream up a torture like that? Exquisite really when you think about it. But it gets better, or actually worse. Because it doesn't get better the way a burn does, the burn spot stays. You can't help it by running it under cold water. It just burns as long as it wants to. And then when it stops burning it doesn't heal. Real burns like this would started healing almost as soon as they happened. Every new cycle of chemo was like re-burning the old burns and then adding new burns. How is that for a nightmare? Pretty good, eh?
But that's not all. There's more. The new thing that's started to happen is bugs on my face. In all the places where the allergic reaction was - randomly - it's random and that part is important, I'm now randomly getting this feeling of bugs on my face, or maybe it's the light brush of cloth, or perhaps a hair falling into my eyes. Because it's random I forget that's what it is. It's some kind've weird nerve reaction or damage thing going on, maybe it's healing, like the itch of a healing scab, but not. So I feel it, and depending on where it hits, or how it hits I either think it's a bug crawling up my nose or debree falling into my eyes and I brush it away, a little freak out and I start brushing before I remember and go, oh, it's probably just that. How's that for adding to the nightmare?
Mentally this has been hard. I should not be hard on myself if I am having trouble with it. Yes, it is harder now because people think I'm better. Luckily my husband doesn't think I'm better. My husband has been seeing it, and realizing that first I had to go through some of the worst of it, and then I have to go through all this - what - decomtamination? I don't even know how much of this might be withdrawals from some of the other drugs like the steroids. I feel withdrawals from taking asprin. If I had to take asprin for a week for some sort of injury or tooth pain I would always allow my self a day or two of feeling more pain after I quit, because you get used to not feeling your body, having it blocked, and then when your body comes back online everything that you feel, feels like it must be pain until your brain re-adjusts. I think a ton of that sort of thing must be going on with me right now. I'm only used to a bit of asprin now and then, nothing like these massive amounts of so many different kinds of deadly drugs. Yes I am having at least as much trouble with this recovery period as I did with the chemo itself going at full throttle. And in some ways worse.
Because during the chemo I basically just had to take it, take it and survive. I had a whole big team watching me for symptoms and side effects prepared to step in and take care of it when things went wrong. I had no responsibilty. I didn't have to worry about it. Not very much. If I was worried I just had to tell one of them at my next appointment, and that was never farther than a week away. Now it is on me again. Now it is on me to listen to my own body, know what's going on and to decide if it's something I have to deal with or not. I will not see any of these doctors again until the surgery and until after the test results from the surgery. I will not see those nurses again - ever. Perhaps I am also having withdrawals from such intense medical attention. Perhaps there is that too.
All this to say that I couldn't get back to sleep last night. I was anxious. I had sat down during the day and looked at my prospects for the future, my medical prospects realistically. I took a real, long hard look at them. They weren't all that great. They aren't as great as I've been telling everyone that's for sure. And they aren't all that great period. Then I let it go. During the day I let it go. I had that moment of get realistic, take a real, hard, realistic look so that you can make better decisions about what you want to do in the next few years, retire or not, those kinds of decisions. Use it to help you make better decisions and then let it go, don't dwell on it. Easy enough to do during the day.
In the night it bugged me. Especially the luekemia. That bugged me the most. It is partly because I saw it happen in front of my eyes on the Cancer: The Emporor of All Maladies documentary, that was one of the stories, the kid who got cured of his cancer, was good for a couple of years and then got luekemia as a result of his chemo for the earlier cancer. That kid died a horrible death as they tried to treat that secondary cancer. Right in front of us. On camera. He suffered. I only really just discovered that might be my secondary cancer too, one of the chemo drugs they gave me is the agent for that. Depending on dose, depending on if you also get radiation. It can happen as soon as 2 years and up to 10 years after the chemo. This was all basically new information to me. And of course I put it in the context of that poor kid dying on tv. And I put it out of my mind during the day.
And I woke up with a headache in the night. I never get headaches. Rarely. When I couldn't get back to sleep. I kept thinking about that whole oddity of me having one Baby Doctor through the AC, then that weirdness over me and the AC that started happening, the questions I had about the dose and I was supposed to just see Dr P for a couple of times, but I never did go back to Baby Doctor. I got up in the middle of the night and looked up my dose in my little oncology passport. How much of that did they give me? 1067mg. Every 28 days for 4 cycles. I took the full amount. I looked it up on the internet, dosage for these chemo drugs. The standard dose for that one is 600mg, I found that information in 5 or 6 different places, that exact number. I had almost twice as much. And I will have radiation too. Now I am back to feeling like someone with stage 3 cancer, and less like some one who's cancer is "undetectable" now. And now that Luekemia story feels much more real, and much closer. So I looked up that cancer. Only 25% survive for 5 years. 75% do not. And of adults who get it, older people like me, people who have it as a result of earlier chemotherapy, most do not even make it through treatment, they die of the treatment before they get a chance to die of the cancer. And even if they make it through treatment they die within the year anyway. Without treatment the average life expectancy is 2.4 months. Wow. That could happen to me in 2 years. Or anytime up to 10 years from now. Now I know why Dr. B seemed so pissed when he finally looked at me and it seemed like the AC was not working. He threatend to just go straight to surgery if the taxol did not show good signs of being effective right away. I get it now. It all clicked into place. Wow. What a nightmare. Only I was awake.
I got terrible heart burn sitting there at my desk looking at my computer I got heartburn. But is it heart burn? Maybe this thing I've been calling heart burn is actually some kind of heart attack, because this is also the same drug that causes heart damage. It damages heart cells. Perhaps those two terrible episodes of heartburn weren't heartburn after all? Perhaps my fear of dying of a heart attack after my second chemo was not so misplaced after all. And if so then perhaps taking those heartburn pills that cause stomach cancer was even more stupid than I thought at the time. At least I stepped in and saved myself from that. I just stopped taking those pills on my own. I took that risk and I was fine.
I was awake and discoverying this all my myself in the middle of the night. I was awake and getting heartburn, or was it a heart attack? This is why you should never look up health stuff on the internet, even if you are looking at documents that are chemotherapy protocol pdfs written for doctors and journal abstracts rather than some quack trying to sell you his/her bogus cures. You still have no context for the information you find there. I don't even know how up to date it was. However, and yet - I did decide, right then and there that if I do get the Luekemia as a result of the AC treatment, then I will not have further treatment. Those odds are not worth it. I will just die in my 2.4 months. Now that I've done 6 months of hard chemo 2.4 months of dying of luekemia does not seem so bad. It won't be so hard on me or my family if it can happen in that short of a time. It's the long, drawn out suffering that is so hard on everybody. Only if there were a really promising trial at that time would I take it on as a contribution to science. Only then. So. Once I discovered, and decided that, all alone in the middle of the night, standing there, drinking a cup of water and remaining vertical as a way to manage heartburn, I started to feel better. Once I made that decision I felt better. If that happens, and I guess that is the worst that can happen as far as I am concerned, I will reject that treatment and just go straight into palliative, hospice care. It will be too soon. And it will be too bad. But it doesn't have to be out of control suffering.
I went to back to bed then. I was able to go to sleep. I slept in. I slept in all the way until 8 am this morning. My husband was worried. I never sleep that late. He can't remember the last time I slept for so long.
So this is where I am at. I thought I would be all happy and coming back to health. But I'm not. I'm not ready for that yet. I'm still dealing with the fall out from the chemo. And in a way I'm in fact just starting to deal with it. Just the chemo part, not even the whole treatment plan. I'm just starting to wrap my head around what the chemo part of this treatment means as I go forward. Being here, mentally is not at all what I expected. And even physically, I thought I would be feeling better by now. There has been too much damage. This isn't like getting over a bad flu or cold. You don't come back to health so easily. It's not a day or two of being pleasantly weak and a bit exhausted, and then you are fine. It's not like that at all.
It's more like coming home from a funeral and knowing that it's not the end of your grief, it's actually the beginning of learning how to live with this grief for the rest of your life. That is a better comparison. That's what the end of chemo actually feels like. This is the beginning of learning how to live with the effects of chemo for the rest of my life. And I'm not done treatment yet. I think this was probably the hardest part. I don't think I shall have to go through anything that hard again. And now I have the choice to say no if it comes up. And I know that mostly I will say no. So it doesn't hang over my head in the same way that it instinctively did up until my middle of the night discoveries last night. And yes, these smaller side effects that may continue for months or years now, do seem smaller in light of what could happen, of what could still happen as a result of what was initiated during those chemo sessions. Perhaps I was not so far off thinking of lethal injections as they did that to me. Perhaps those injections were lethal and we just don't know it yet.
But I do feel better for facing it, and deciding. I feel better this morning than I did yesterday morning. I feel better as I write this and feel those little bugs crawling around on my face and in my eye brows. I've got a plain old fashioned zit growing on my nose. My body is coming back, it's starting to fight back against bacteria again. Zits. Of course that would be the first sign that I'm actually recovering from chemo.
Life, life, life. You are such a practical joker. Sometimes I think that I could believe in a god that is not an angry, judgemental old man, I could believe in a teenager god pulling practical jokes and pranking us, that is what life is really like. I suspect that if there is a god it is merely a teenager playing practical jokes. Or perhaps it's a ten year old boy. A ten year old boy blowing things up and having a good time without really knowing what he is doing. Could be that. I could be convinced to believe in a god like that.
And I say that from the perspective of someone who's just been smite, smited, smote? Punished by god for the sins of eating fat or meat or just generally putting the wrong food into my "pie hole". I don't feel guilty in front of that pissed off punishing god. I do not believe in that type of pissed-off punishing god, even if he appears in the modern non-church version as the judgemental, avenging food police. I say that as someone who considers the polluted air we breathe, the toxins in the water we drink and in the soil that grows our food. And the people who profit from these environmental disasters. Perhaps there are a group of powerful, judgemental, angry 'gods' out there - but they are not the good guy.
Right now it's almost 11am. I'm still not dressed. I am way off schedule. But I feel good. My body can take it finally. That is a good sign too. In the middle of chemo I would not have been able to sit this long without eating, drinking, napping, moving around. I was like a baby that way, or a toddler. It feels better to start living like an adult again. Who knew that being adult mostly means having longer periods of time where you can do things. That you can simply sit and work for longer. That you can be up and exercising for longer periods, and more intensely too. That you can eat more at once and then go for longer between meals. Who knew what an important stage of maturity it is when you can do those things. These are the things that allow you to be. You need to be strong enough for them, but then you can do way more with your life. You have that time and energy. I'm getting it back. Even as I am having to adjust to all the changes, I'm also getting my basic strength back again.
My husband has gone to drive Henry See to his treatments. Chemo and raditiaon together. It does not matter if he will get a secondary cancer from that deadly combination. He is dying from this cancer. His cancer doubles in size every three weeks if left alone. They are just trying to make it so that he can function for longer, as he dies. That is what is happening with my husband's old friend. My husband will see something completely different with him methinks. It won't be the same kind of experience. I am curious to hear from him when he gets back. The last time we saw Henry he knew he had something in his brain, that it might be cancer but they didn't know for sure, he didn't let them do a biopsy, and he was thinking that he might just try some cannibas oil. He was healthy but scared. He had no symptoms except for passing out that one time, and he didn't feel anything over that, didn't remember it either. One minute he was being interviewed by a reporter in Starbucks, and the next minute he was in a hospital bed with all of his ex's sitting on the bed. That was the last time we saw Henry See. I was bald but still in the early cycles of my own chemo. We had a bit of an empathy moment together. Since then he's had two brain surgeries. Since then he lost a lot of function as the tumour grew between surgeries and has got some back as a result of the second surgery and now the chemo and radiation treatments. But he doesn't have a good prognosis. He's moved right ahead to the dying process. I think. My husband will know more when he gets back, after he's talked to Henry in person.
My brother and I did not have this kind of cancer, we have the slow growing cancer. Our cancers move in slow motion. If we manage it correctly it may even happen that we die of something else before our cancers slowly move to that final stage. I understand this kind of cancer a bit. I understand the idea of living with it. Mom died of malignant melanoma, at the end after all that slow moving stuff she did finally have a die within two months cancer, no treatment for her, just comfort care. It was in the days before they got their act together with hospice care, so she was in a hospital, but the only treatment she got was drugs to ease the pain, comfort care. It was okay. At the end it was okay. She suffered, but not that much. She did not suffer dying as much as she had suffered living with cancer.
So here I am today. It's Tuesday. I slept in. I did not have to get up and get a blood test. I did not have to sit around the waiting room for two or three hours waiting for a five or ten minute doctor appointment. I had a mid-night, not mid-life, crisis instead, and then I slept in. And then I got up and started writing in my pjs. And I feel good to be out of that old tight schedule.
It feels really good to have gone through that midnight emotional wringer of what now, what next, and come out the other end again. Okay. Not great. It's not the greatest what now, what next. But it feels real. It doesn't feel like the happy glossed over version that I've been projecting. It feels real. And it feels okay. Not the best. But better because it's real. I'm okay with that. I think I can deal with that.
Maybe my brain is okay after all. I feel more like me. This is the kind of thing that I would do, this is the way that I would handle it. I kind of love myself. I feel like an old friend has returned. I might not be so perfect, but I'm the only me that I've got. It's good to have me back again. I am smiling as I write this. Whew. That was a big step I took yesterday and last night. Mentally it was huge. Freaking myself out and dealing with it.
I don't care that I didn't do laundry this morning. I was planning to do sheets and towels instead of going to the hospital. Oh well. I didn't plan to sleep in and then stay in my pjs writing all morning. But that sort've behaviour is better when it's unplanned. I'm having a play hookey morning. And I'm strong enough to play hookey like this, celebrating that too. But look, it's after 11am, I'm getting hungry, I think I shall get up and have some breakfast, whatever I feel like. And a nice warm bubble bath too. Get dressed, and then who knows. I have the apartment to myself and nothing that I really have to do. I deserve a day like this, I earned a day like this. And I can say that even if i don't believe in a punishing god that also hands out these kinds of earned rewards. I don't have to be rational about that god stuff. None of that is rational in the first place.
Heck, I might even look at today's todo list after I have breakfast and get dressed. I can do that too if I want. There are phone calls to make on that list that I'll feel better for making. But I could do them tomorrow just as easily too.
Dispatched April 9