But this is me. This is another face of me. I never knew that my body could do things like this. But it can. Strange. This is me become a stranger. Acting weird. Acting uncontrollably weird.
"Wounds at high altitude do not heal. I knew I wouldn’t recover until I was off the mountain." Left for Dead: My Journey Home From Everest, Beck Weathers, 2000
Monday morning, I'm still having an active allergic reaction to the last chemo. Not good. But I would not say it's so bad I can't go for my next chemo on Wednesday - probably.
I woke up with these shooting pains. It's is a skin thing, but deeper. I get these sharp pains like I've just been burnt. It's like when the side of your hand touches a hot iron, or your bare arm accidently sears into the oven rack when you take out a batch of cookies. It's that same focused, unexpected pain. It feels like a burn. And if I look at that spot where I feel the pain, in a second there will be a red welt, just there, where the pain is. As if I did burn myself even though I am just lying in bed. Even if I am not doing anything that could possibly cause this pain and the skin reaction there is a red welt and then a blister. Like a real burn, but nothing real to cause it. Random. Weird. Painful. Frightening. You don't know when or where it will happen next. It just does.
It frightens me because I've never experienced anything like this except as a concrete physical, from the outside, accident. I just don't get it.
How does this happen? I don't know how to deal with it. I don't know how to live with this.
But this is me. This is another face of me. I never knew that my body could do things like this. But it can. Strange. This is me become a stranger. Acting weird. Acting uncontrollably weird.
In some ways this chemo allergy reaction is just as scary as cancer. It's your own body doing harmful shit to you, it's not some foreign invader, it's not a virus or bacteria attacking you, it's you, doing this to yourself, on a cellular level that you can't control.
It makes you wonder about your relationship with your own body.
And it makes you wonder how man could ever have thought he had dominion over all the beasts when he doesn't even have dominion over his own body. Surely all those people who fostered and continued that belief must have noticed that they didn't even have dominion over their own bodies.
"Organic and inorganic chemicals, he proved, were interchangeable. Biology was chemistry: perhaps even a human body was not different from a bag of busily reacting chemicals - a beaker with arms, legs, eyes, brain, and soul." The Emperor of All Maladies, Siddhartha Mukherjee, 2010
Am I really just this mess of chemicals, and energy, and bits of matter that don't even all get along, or work together, or agree on how to operate this poor chemically destroyed body anymore?
Is that reality? Is reality all this stuff that is happening within me on the cellular level? Or is it the stuff that happens out there, outside of my skin, in the 'real' world, where I talk to people, go to the doctor get a diagnosis and treatment?
How shall we define 'real'? I can live or die based on what happens inside and outside my body. And so I guess they both define me, they are both real.
This cellular thing that just sent a shooting hot pain into the edge of my finger and left a little welt there is just as much a part of me, as real a part of me, as the mental part that is sitting here berating myself for letting it get to this point and not understanding the concept of allergies enough to know what's happening. The experience is horrible. But is it serious? Should I tell the doctor? Should I try to stop the treatment? How much permanent damage is happening right now?
I don't have enough information about that. Not from the doctor, not from the nurses, and not from the internet either.
Lack of data.
That is what they write on their forms; requests for additional appointments, blood tests, scans and probes, that's always the reason for the request - lack of data.
That's how I feel - lack of data.
But nobody is going to give me the information. The medical profession can be cagey. First there was the business of Dr P1 giving me almost twice the normal protocol of the good old AC a.k.a. "Red Devil" chemo, me asking why my treatment was so 'aggressive' because the nurses kept commenting on it. I looked it up. Almost twice the protocol. Dr P1 just got all defensive and never did give me an answer. I am sure it was just a number mistake on his part. But he wouldn't admit it. And from the beginning with this taxol the nurses refused to tell me about the nerve side effects, they just told me to let the doctors know right away if I noticed any unusual symptoms. I mean - when you are in this chemical soup and it's your first time how can you tell the difference between a usual symptom and an unusual symptom? Do they do not want us looking things up either.
I did not think about allergic reactions in any way that meant I might have responsibility for spotting problems and making decisions. I thought that would be 100% between the nurses and the doctors. Out of my hands.
If I had a reaction, it would happen right there in the chemo room, the nurses would deal with it before I went home, there would never, ever be any after effects at home, and that would be that.
That's not at all what happened. And it's not my fault for not knowing. I had no way to know. This is not something that's on the internet. This is not something that's so common that cancer patients I know have experienced it. It's just not out there.
"It probably won't kill you"
That's what my parents used to say to comfort me. They used to say that to help me separate the things I needed to panic about from the ones that probably wouldn't kill me. According to them, lying in the middle of the dirt road to see if the cars would drive right over me with their wheels in the ruts was going to kill me even if it didn't hurt one bit while I was lying there. But throwing up from the flu was probably not going to kill me no matter how bad I felt when it was happening and how much it felt like I was dying from it.
I remember it being hard to figure out the pattern of the 'probably not going to kill you' from the freak out and punishments because this 'could kill you' things that I tried to do to myself. It was hard to learn all that when I was little.
And then I basically had it, and I spent most of my life feeling confident, I felt like I had a pretty good handle on what would kill you and what probably wouldn't kill you. I survived like that for a long time.
But now I'm back to being a kid again. I don't know instinctively which of these treatments and side effects might kill me. And which ones probably won't kill me. And while I have doctors and nurses to advise me and help me they don't know everything either. They know more than me. But they are only human. They can't protect me from everything that might kill me any more than my parents could.
Am I afraid because I've been on steroids for months now, since October? These fight or flight steroids. Is it just chemical? Or do I have a reason to be afraid? I don't even know that. I know too much to deal with this effectively. I know too little to deal with this effectively. Both things are true.
I don't feel good. None of me feels good. But I don't feel bad enough to go to emergency. And so here I am. Stressing.
I should take one of those antihistamines that is also an anti-anxiety pill. And that reminds me, maybe this feeling is not from the steroids, maybe it's the other pill, because I'm becoming addicted to the anti-anxiety antihistamine pills. You can only have so many of these per month. It's the law. Maybe it's some kind of withdrawal from them between chemos when I run out?
I don't know anything.
What should I do? What can I do?
I can be aware.
I can continue to take care of myself physically and mentally as well as I know how. I can continue to accept that some of these bad side effects are just things that I have to live with, for a while and maybe for a long while.
I can accept the pain, two kinds of shooting pain now, that deep nerve pain and also now the burning skin pain. I can let the pain pass through me. Don't hold on to it. No point. This pain serves no purpose. It doesn't help protect me from further injury.
Who am I kidding. It's building on itself. I still have the hand rash and it still flares up and gives me more burning pains and welts. Most of the top of my hand is covered now. I can hardly bend my thumb. My eyelids are 'burnt' like this, my cheeks. It settles down to this scaly sore skin between chemos but it never returns to 'normal' any more.
All I can do is hope that my body stops reacting when they stop giving me more chemo every week.
And all I can do to help that is to try and stay relaxed so this whole experience doesn't turn into some kind of chronic stress/reaction loop.
Yesterday on the radiothey had a whole show about the drugs they are using to help create religious ecstasy and thus reduce the fear of death in terminal cancer patients. Or even the fear of recurrence in cancer patients who are not terminal but just can't believe it. They talked to some people who are mentally and emotionally paralyzed by their cancer and the fears that come with it. I can see how you would get that way. I'm afraid. I'm suffering. But I'm not paralyzed by my fear and suffering.
I'm going vent here with you, I'm going to let my worries and fears out. And then I'm going to have breakfast, I'm going to have a bath, and I'm going to apply all those lotions in a very matter-of-fact way.
Did I tell you that I use different fingers for different products so that I don't accidently get them mixed up and apply the wrong lotion to the wrong body part, or contaminate the lotions and so I don't accidentally stick something bad into my eye or nose?
I use my ring fingers for the eyelash gel. I use my right ring finger for my right eye and my left ring finger for my left eye so that I won't spread any infection from one eye to the other. And that happens first.
Then it's my nose. I use my pinky fingers for my nose gel because they fit into my nostrils okay, and I do the same thing with one finger for each nostril, trying not to spread infection from one side to the other.
The cortisol cream for my hand and elbow is done with the index finger, and I wash the tips of my fingers with soap right after the application because this stuff cannot go into my eyes or mucus membranes. I don't apply it before I go to sleep because I put it onto the back of my hands and I'm afraid of rubbing my eyes in my sleep and getting it into my eye accidently. It's a ritual.
I need all this lotion every day to keep my different body parts from getting into more serious trouble. Just like a baby.
I'll stop needing it gradually the same way I built up to it. As my body gets over this chemo my nose will heal, my eyelashes will grow back straight and my eyelids will strengthen and turn back out from their rolled-in position. Hopefully. My cheeks will stop flushing. My hand rash will stop flaring. My fingertips will quit being numb. My hair will start to grow back.
When I list it going backwards from here it doesn't seem so bad. It's when I look at it going forwards; where does this symptom lead, what happens next with that symptom, when it gets open ended about how bad this can get, then it gets really frightening. There are only two more chemos to go. I am nearly at the end now.
Yes, I am afraid because that last AC was significantly worse. They were all bearable up until that last one. It was significantly worse than all the ones that came before it. It was far more than four times as bad as the first one. It was not an incremental one step worse than the third cycle. The last Red Devil AC chemo was a good four times as bad as the third cycle.
Don't get myself all wound up over this. Acknowledge it, yes it's a fear. And then let it go. It probably won't kill you.
Yesterday I did my list, more or less. I threw out a full garbage can of papers, mostly old recipes. I did have that moment of being reminded what it was like before you could just look up recipes on the internet, and before the internet got organized with recipes. Now they are there, and they are easy to find and there is no reason for me to save all these printed recipes. I cleared out two drawers in my file cabinet.
But then I was done.
And I thought about how I meant to call J but I was just too tired and miserable. And how I should at least send an email to P, and how I should take a picture of me with the cancer shawl that D made. I have all these social obligations. I cleaned my office drawer yesterday. Perhaps I should not be so smug about that. Perhaps I should've spent that bit of good energy time and called J, wrote to P, taken the photo for D.
I have so little good energy time these days. I am jealous of my good energy time. It is my precious. My precious time.
I spend hours and hours of it in hospital waiting rooms. I try to make it into something okay by reading a good book, having a picnic snack, tuning out and pretending it's a day at the beach.
I have become a better reader. I don't skim anymore. I have been forced to slow down. And now the books actually take me someplace else in my mind again. My life in general has been going too fast and shallow lately, before the cancer. I've been trying to do too much, to be too many things.
I've even slowed down for my naps. I let everything else go and allow myself, demand for myself, that precious one hour just for me. I start it with a warm, dry, safe ritual. Simple. It's just being on the bed with the covers around my chin, feeling that I am warm, then feeling that I am dry, then feeling that I am safe. I have been cold, wet and in imminent danger before in my life. I remember those times and I appreciate the difference now. Whatever else is happening to me right now, I can still be warm, dry, and safe - at least for the duration of a nap.
Yesterday I also did the yoga/actor body relaxation method, starting with my toes. I was surprised at how different my body feels from the last times I did this, back when I first started the AC.
This time there were weird flutterings through whole sections of my body. The stress that came alive and then left was another kind of bird. Something odd. I held onto my fear of that strangeness, calmly, and then let it go too.
Mind and body. When does matter become mind? When does mind become matter?
My precious. Time. I take it more slowly now. I have very little of it these days. But I savour each drop more slowly. I don't gulp it so unthinkingly anymore.
And I'm still not sure about yesterday. Should I have left the desk drawer closed and not bothered to do that clean up, should I have made those phone calls and sent those emails instead? Or do both of those things take me towards where I want to go next, towards where I'm going now? And I just have to make a point of working my way through both, going through it all slowly.
I feel like I was doing more back in the days of the terrible AC chemo. And maybe I was. I used to get a week of pretty much normal time, except for that last cycle. It was just that the down was so much deeper, but it wasn't really any longer, it didn't last longer, it was just exponentially deeper down.
Now I have fewer days of feeling okay. Fewer and fewer each time, and even then I'm not really feeling okay, not really feeling like me, and I don't know how much of 'me' will come back even after the chemo stops.
"Apparently the medical regulations require them to give patients all the treatment they can stand and to let them go only when their blood can’t take anymore." Cancer Ward,Alexander Solzhenitsyn, 1966
I should be kinder to myself. I know I'm down to the last, most accumulated days of this stuff. I might get worse for another week or two, and then it will start to get better - for good. Until the surgery, until the radiation, until I start to feel the effects of those daily pills. I guess that's the problem. I am tantalizingly close to one ending - and I need an end to this - but I know that this ending is only the beginning of another stage, another set of stages.
I am glad we have some things to mark the change, and the turn. It's been a really long six months. That is a long time to be 'critically ill'.
I'm glad my son is coming for the last chemo. I'm glad my sister is coming for the surgery. I'm glad my brother is coming for the radiation. I'm glad that the hunkered down, cabin-fever winter stage is coming to an end.
"The only way out would be the way through." The Emperor of All Maladies, Siddhartha Mukherjee, 2010
It's Monday already. This is the last day of my mini-week when my life is not entirely all about cancer. Tomorrow starts the mini week that is all about cancer. Blood tests and pre-op tests at the hospital tomorrow. Something new! Not sitting in the waiting room for three hours reading a book, this will be two or three hours of tests. Blood tests, and what else? Who knows, I guess I'll find out.
Then Wednesday in the chemo room, my usual time 11:30, the usual nurses I'm sure. Thursday the worst allergy reaction day. And Friday, Saturday, Sunday the semi-allergy days. And then it will be Monday, my son will be driving on Monday. One week from now we will be doing the big set up for the run down to the last day of chemo.
And so today? What is on my list for this day? Laundry. That I can do. I'm pretty sure. I can't carry more than one load at a time. I no longer have the energy to go back and forth twice like I did at the beginning of this chemo. It's discouraging. I have gone downhill since January. But I knew that was a bit of a break. I knew those first five cycles of taxol would probably be a bit of a break, and I did enjoy them. I suspected it would be worse at the end. And it is.
And I know I will start to come back in April. And that it won't be straight ahead. It will probably be like this spring, a nice day that seems like spring is here and summer is not far behind, followed by a snowfall that brings back winter, and only gradually getting further and further along into the new season. That's what I think the big recovery will actually be like. It will be a slow seasonal kind of change. Yes the days will be inevitably longer and the season will change, but the daily weather will be more unpredictable. You won't know on any given day body wise, recovery wise if it will be spring with the promise of summer, or back to winter for a few more days.
In the meantime, it does help me to plan my day for myself. Even if I can't do much anymore. So, today I am going to get up and get dressed.
I am going to have cream of wheat for breakfast. I am going to have a bath and do that whole lotion ritual. I am going to look at my week's schedule and plan out when I might be able to do a few optional things. I'll start planning for my son's visit. And I'll do my laundry today, walk to the end of the block carrying a small bag of clothes. And I might pick up some chemo day snack food if I feel strong enough. Start reading H is for Hawk. Preparing for hours in that sunny hospital waiting room with a picnic lunch and a book to read. Going to pretend I'm at the beach. Penultimate chemo coming up this week.
Taking the Grim Out of Grim Reaper With A Psychedelic Trip
Things are getting pretty mystical at New York University, where doctors are using hallucinogenic drugs in a clinical study to relieve anxiety about death. The results so far: kind of mind-blowing