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Cancer Daily Dispatches

A personal daily diary of successful cancer treatment.

Welcome to the story of my cancer journey

I was diagnosed with stage 3 breast cancer in 2014 and had chemotherapy, surgery and radiation. I originally wrote these dispatches to help me sort out the impact that cancer diagnosis and treatment had on my feelings of mortality and my sense of myself. Mostly I was just trying to keep it together. Along the way I transformed from a normal middle-aged woman into Furiosa. Not necessarily what I was going for, but I'm okay with it.

Hopefully these stories from my experience will help you feel less alone in yours. 

June 15, Saturday

Epilogue


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  • 3 Jun 2018 2:13 PM | Contact Me (Administrator)


    I bullied my way through it the first three times. This is the last time. And fate gives us these days of holiday when I can stop pushing myself, naturally and simply go through it. The shortest days and longest nights of the year. Social isolation at one of the most social times of the year. It's scary. And it's sad. Every life ends in death. 

    "First I was dead. Then I wasn’t. Then I might as well have been dead." 

    Left for Dead, Beck Weathers, 2000

    Yesterday was a bad day. Sore in the shoulders and arms, sick in my stomach from the heartburn medication. Woozy just from being so weak. My schedule was walk, nap, walk, nap. I did two little walks. The day before I made it all the way around the block. Yesterday morning I didn't even make it to the second alley, I had to turn back. My heart was pounding and my whole body was trembling when I got back. Half a block. In the afternoon I tried again. This time I made it to the second alley. It was a small success. I do feel better for these walks - the little 'surgery recovery' walks. It was a fluid day yesterday too. Every time I felt a head ache coming on, or felt especially bad I had a cup of water. It made a difference. I peed a lot too. And I was up and down a lot peeing during the night as well. 

    My stomach is a bit of a mess. I'm trying to get myself off that heartburn medication, I think we went right to the full dose too fast, when perhaps that one bout of heartburn early on was only an anomaly. Now the heartburn medication itself is the problem. I'm trying to get my stomach back into some kind of better balance in these two weeks before I start the new kind of chemo. Trying to start as fresh, and healthy as I can. 

    Yesterday when I did my second little walk I felt death nearby. 

    This back alley is the route I always did with Moose. It is the shorter route that Moose and I did when he got too old to play, this is the route we did when it was all slow pain for him. It was the route we did when he didn't care about snow, or snowballs, or mailmen or any of the things that used to drive his life and give him joy. This was the alley where Moose and I encountered Kathleen and the big white dog by accident. Those two big old dogs still ready to fight to the death. Kathleen and I two old ladies getting pulled along across the shear ice, all that drama. It was exciting then. They are all dead now. Kathleen. Moose. The big white dog. And yesterday I walked past that spot slowly, doing the dying walk, and not caring. Not caring about anything really. It is all gone. Dead. They are all dead. 

    What makes me think that I should be alive, so many years after they are all dead, here I am, shuffling along to fight off death, and why? Kathleen died of cancer. I think it took a year or two, maybe three. She started treatment, she did not get better, she started treatment and she started dying all together at the same time. We are not positive that is not going to be my story too.  

    But there is no real reason to for me think that right now. I feel that way because in fact much of me is dying right now. Cells are dying all over my body. Blood, bone marrow, stomach lining, hair. Cancer. Cancer too. I feel death. I feel like I'm dying. It's an act of will to get up and walk out the door. It's an act of will to have a bath and get dressed. Lying down to rest is not to recuperate, it is to die. 


    "If I fell down, I was determined to get up. If I fell down again, I would get up again. And I was going to keep moving until I fell down and could not stand or I walked into that camp, or I walked off the face of the mountain." Left for Dead, Beck Weathers, 2000

    Resting just kills you more. Get up. Get dressed. Go for a walk. Even if it turns into the death memory/reflection walk, go anyway. Keep moving. Remind your body to live. Push it towards life. And eventually it will start up again. Eventually you start being alive again, your cells start reproducing without dying and you come back, and it gets easy, it starts to happen all by itself again. 

    This is not a real, natural death. This is created artificially. When they stop the chemo the death part stops too. When the chemo leaves my body the cells can come back again. It feels like a real death though. In the moment, it is a real death. If this moment kept on like this I would surely die. And it probably would not even take that long either. Everything would just keep on shutting down, it wouldn't take so long to die like this. This is what I feel when I am in this low state. 

    I bullied my way through it the first three times. This is the last time. And fate gives us these days of holiday when I can stop pushing myself, naturally and simply go through it. The shortest days and longest nights of the year. Social isolation at one of the most social times of the year. It's scary. And it's sad. Every life ends in death. And when it gets to that stage, then all these things that brought joy in life don't matter anymore. That is really sad. That is the really sad part. That it doesn't matter. When you get to death's door, you don't care. 

    "That autumn I learned from my own example that a man can cross the threshold of death before his body is lifeless. Your blood may still be circulating, but - psychologically - you have gone through the whole preparation for death and endured death itself. You already see everything around you dispassionately, as from the grave." Cancer Ward, Alexander Solzhenitsyn, 1966 

    My Dad loved grapes and then after he died there was no one in my life who loved grapes the way he did. No one who loved snowballs the way Moose did. The joys of life. Still there. There are still grapes, there are still snowballs and other dogs love them. But they didn't matter to Moose anymore. They didn't matter even before he died. 

    Things fall away. And some of the best things fall away first. 

    I cooked a lot when I first got sick. I don't care about cooking right now. I don't care about knitting. Reading. I feel like I could die before I finish the book anyway. Die before the sweater is done. I don't care about finishing these things before I die. So why bother now. Why push myself when it's so hard to care, when it takes all this willpower just to keep putting one foot in front of the other and simply staying upright. 

    I still like my flannel sheets. They feel nice. I am more inclined to crawl into bed and lie there now. I know more about how to take care of a dying person now. Those intimate details. Sheets, towels, temperature. No demands. Kindness. Gentle. 

    We watched TV last night. My husband keeps us to a schedule. TV did not start until after supper. He made supper. I nibbled, that is the only way I can eat now, so I nibbled supper too. I didn't last long. I had to go to bed before the TV show was done. My husband was up by himself the rest of the night. I don't remember. He kissed me when he came to bed. I am surprised that he still kisses me with my bald head and my swollen, wonky eyes. He has a horror life of his own in this apartment. He is alone and not alone. When he thinks I'm asleep he tiptoes around the house.   He is not free in his own apartment. He has to tiptoe. 

    Life of the caregiver. I was the caregiver after my brother's lung surgery. It was part of my day to go to the hospital, I brought breakfast and coffee from the outside world, I walked the halls with him. I remember that time we scared the family waiting for their loved one to come up from surgery; the looks on their faces as they watched my brother shuffle towards them, hanging onto his IV with four additional tubes of blood going out of the hospital gown pumped into a box at the bottom of the IV pole, white compression stockings. As we got close he looked at them and said, "I know why you are looking at me like that." They were embarrassed. Ashamed. Didn't know how to answer. "You think these white stockings make my legs look fat, don't you." They laughed. I laughed. My brother smiled at me. I had given him the white stocking joke. He'd already used it on the surgeon. We were in cahoots. He was in great pain during that time. He had a whole pain management team helping him to bear it. I walked away from it in the afternoon. Fed his cat, cleaned the litter box. Took care of his life when he couldn't do it himself. Every day I left the hospital. It was a horror to watch a loved one go through those medical procedures. His white, pain-face, the freaked out faces of the young women on his pain team. But it wasn't me. 

    Now it is me. It is my turn. We do not really know if this is it for me, time to croak, or if this is my year of horror medical life and then I get better and it all works out in the end. My brother passed his five-year cancer free, in remission, doctors sent him home to get on with his life test. We don't know how my story is going to go yet.

    Right now, in the down moments it feels like dying. It feels like this is dying. It feels like I am dying. 

    I fake it in front of my husband. I just say I'm weak. 

    What is it about this feeling of dying that is different from just weak? No future. Partly that. Usually the things you want to do with your time are building on something, building towards something flying off into the future. This latest script is going to go on TV, going to be part of my career building, part of my reputation. When you take the future out of it, then things like the work you do become meaningless. In the moment it is not that meaningful. The future is what makes it worthwhile in the moment. 

    What does matter? In this moment, in this nearness to death moment what does matter? Comfort. The mental space to be at peace. Lack of pain, lack of fear. Am I afraid of death? No. 

    I don't know what comes next - after death. After the dying part is over and done with. 

    I even suspect it may be really cool, and full of connection and future, a nearby parallel universe where I can live this whole virtual life as a ghost bugging my kids and grandkids just as the family myth says my dad did with us after he died.

    I could be the ancestor that intervenes and meddles on their behalf. It could be way more fun than being an old lady alive but not powerful in their lives.  My kids and grandkids would probably even believe in my ghost. I think I'd like that. I don't think they'd be scared. They'd joke about it. Maybe it would even be me and Dad together, two ancestor ghosts in cahoots. 

    Or it would be letting go, blending back molecule by molecule into the universe, the general joy and oneness of it all. I have experienced enough tastes of that in my life to know that would be just fine too, and in many ways more tempting and satisfying. Lose myself, just let go and be free completely. 

    Either would be okay. 

    I don't believe in hell. Hell is what you make for yourself right here in your own life on earth. I don't believe in judgment. I have none of those fears of that kind of life after death. 


    Did I tell you that there is this grey cat that comes to walk with me and my husband when we are on the street together? It runs right up as if we are old friends and walks with us for a while, jumping around our legs all happy and friendly like a dog. More like a dog than a cat. It belongs to someone. It has a collar and tags. And it doesn't try to adopt us. It's just so happy to see us, and walks with us for a while, and then goes on its own way, into its own life. I have been joking that it's the spirit of Moose come back as a cat, with that lithe healthy body to play around in. Feeling joy again. The joy of life. And being happy to see us, but not sad, or needing to be with us. I like to think that. That is what I like to think. 

    But I don't know anything about the after death part.

    Generally I am a person who embraces the unknown. 

    I don't mind that death is an unknown destination. I went to the Philippines without research or a plan. I went to the Arctic without research or a plan, just open to the unknown, just open to what might happen. I am okay with death and its unknowingness. I welcome that part. 

    "Hey Brad, Do you believe in life after death?"

    "I'm not sure. I definitely believe in death after life."

    The Late Show with Stephen Colbert

    Aired on May 17, 2017

    And the great thing about the impossibility of knowing for sure is that you can go ahead and think whatever you like. 

    So for me the problem is not being dead. The problem is dying, the transition, that is the hard part. It sucks. 

    But today is a day that I have. I am not dying today. Well yes I am dying, but it will turn around. This artificial, chemically induced mass death of my cells will turn around soon. Tomorrow is one week later. The drugs stay in for a week. The nadir is on Friday, that will be my lowest, most dead point. The second Saturday my body usually starts up again, all on its own, it turns a corner and I can feel it. I come back to life. It happens over the course of an hour or two. I can feel it happening. I can feel it once it starts. But it's like delivering a baby, I don't make it happen, I have no idea what triggers it. The second Saturday waiting for that day. Hoping it will happen for me one more time. 

    But the painful part, the chemo part will start to end sooner than that, tomorrow, perhaps today, perhaps Thursday. These sore muscles in my neck and shoulder, the sore throat, the sore butt, the sore hair follicles. Who knew you had so much hair, who knew each hair would be sore at the root as it dies and falls out. These acute pains will start to end. Just a few more days of this part. That is predictable. I can count on that. Each time is more sore. But the schedule is the same. 

    So today. What shall I do with this day. I can't do much physically. But the thing is that I can't really just sit. I will start to die even more if I just sit. So this is not a day to read and knit all day, not even to watch TV. I have to get up and move around. I have to eat, sleep, and move around whether I like it or not. 

    If I was really dying then I wouldn't have time for this infant lifestyle. I would be in the emotional world of saying goodbye, I would have the huge burden of helping my loved ones let go, it's a big hard job - dying. I feel dying in me, but I'm not in that big hard job yet. It's a quiet personal death that I feel. It's close enough, and real enough to scare people. And yes, I do feel this extra social responsibility. But this is nothing like what it will be when my time really comes around. So I get this odd moment of facing the feeling of my own death, alone, without the social responsibility of dying with your family all around you. It's a weird kind of gift. 

    It's Christmas. The gift giving season. I sit here looking at the little tree covered with ornaments that I made myself when I was a young woman, the ornaments that my kids made with me when I was a young matron.

     There are ornaments that I bought in the Caribbean on pre-Christmas scuba holidays and in the Arctic on pre-Christmas shoot trips when I was middle-aged and just getting into the prime of my career. 

    This triggers memories of being a kid visiting the farm for Christmas. The beautiful old ornaments on that freshly cut tree. Candles. A bucket of water standing at the ready. The starry nights of the prairies. Walking through that endless darkness, unafraid because I was between my grandfather and my father, listening to their deep voices over my head. Doing chores. Feeding the pigs. Scratching the back of the old boar with a nail because he liked it and my little girl fingernails were not strong enough to scratch his tough old skin without a nail. Bristles. That loveable old guy really did have boar bristles. My mother with her Henna red hair and lipstick, never quite fitting in with those aristocratic German ladies, my father's sisters. 

    We've had those kinds of big family Christmas holidays right here in this apartment. All the kids and grandkids come to visit, squished in here together. Going out sliding on the hill, skating on the lake. Ballet in the theatre. Circus shows at Tohu. Cooking lobster. Eating out. Playing. Laughing. Dancing around the living room. Just being together. 

    My son and I, the two of us alone in Yellowknife, eating turkey and all the fixings right out of the pot. His house, his rules. Only one pot to wash. The two of us standing side by side at the counter, digging in, teasing each other, having a good time. My son waking me up in the middle of the night to see the northern lights. Those smaller little sub-family Christmases too. 

    Humans getting through the season of long nights and short days, getting ourselves through the deep loss of sunlight and warmth with distractions of colored lights, fire light and laughter. It's the shortest days of the year. 


    Now it's me and my husband, no one else is allowed to visit. They can't get on an airplane and just come to visit. Too many germs and viruses lurk between us. They are not allowed to breathe on me or touch me. My husband and I are doing the death Christmas together. Getting through it. Just the two of us. I cannot find any laughter this year. I've lost that gift. 

    The day begins. Time to start moving. Feeling awful. Feeling awful from just sitting still. Time to start moving. 

    This is the last of the really bad Red Devil chemo. Once I get through this part it won't be so bad. It will start to get better. Soon.

    Brad Pitt: Big Questions With Even Bigger Stars

    The Late Show with Stephen Colbert

    Aired on May 17, 2017

  • 2 Jun 2018 2:33 PM | Contact Me (Administrator)


    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.

    CBC Tapestry:

    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 

    http://www.cbc.ca/radio/tapestry/taking-the-grim-out-of-grim-reaper-with-a-psychedelic-trip-1.2992608

  • 1 Jun 2018 2:55 PM | Contact Me (Administrator)


    You know it's not real life and that this time will have to end. You'll have to talk to other people, you'll each have to go back to your old lives. Social and professional obligations will start up and somehow you need to fit this new relationship into all that. Compromises will be made, hard things will be decided and done. 


    “Vadka, if you don’t know how to use the minute, you’ll waste the hour and the day and your whole life.” Alexander Solzhenitsyn, Cancer Ward, 1966


    I'm on my second cup of coffee, sitting in my chair by the window at Camp Comfort. It's overcast but not raining, with bits of sun coming through the sky and patches of blue sky. Every once in awhile  wave of real sunlight just pours into this room. It feels lovely. I feel great. Miss Pingu, the sweet pussy cat herself is still upstairs luxuriating in the bed. The two of us. Luxuriating in a shared moment of bliss in the midst of hard times. Yes we are enjoying each other, this moment of comfort and relaxation is magnified by sharing it with another being. And yes, we are each independently enjoying the moment, in the moment, for what it is without thought to the past or the future. 

    We both had a hard winter, each in our own way. 

    She was an old cat living out in the barn, unloved through that long, especially cold winter. 

    She was in such bad shape by the end of winter that our friend who normally rents this cottage out to paying guests doesn't think she will make it through another winter in the barn.

    I was an old woman going through harsh chemo, and there were times when I didn't feel like I would make it either. 

    And neither of us has a guaranteed future. Both of us for sure have some more hard times ahead. This summer I will be going through radiation and Pingu will be back to being a barn cat. They won't let her in the house, and she won't have humans to love her and get her purring and content on a warm lap. She will have to survive this one summer as a mostly wild animal. And I will get my boob burnt, and maybe, probably my lymph nodes too. Then at the end of it Pingu and I can come together again and heal up and be love buddies through the next winter. 

    For now we are in this magic moment of just being together and bonding. It's a bit like a new romance. You never want this moment to end. You know it's not real life and that it will have to end. You'll have to talk to other people, you'll each have to go back to work. Social and professional obligations will start up and somehow you need to fit the new relationship into all that. Compromises will be made, hard things will be decided and done. 

    But for the moment you don't have to do any of that, you can have this night, day, weekend, week together, apart from all the rest of the world, just being the two of you, bonding emotionally and physically. That is really what Pingu and I are doing now. 

    I am ready for a new pet, I am ready to have a cat in my life again. And she is perfect, an older cat that does need a home. And me, an older woman who does need at cat. I have a physical, purring companion for this part of the recovery, and I'll have one for the next part, after the radiation too. That is the plan. Tom has agreed I can take her home with me before the next winter sets in. 


    Hopefully. I don't know if I will have time. Literally I don't know. I don't know if I will have time. 


    I may be full of cancer right now, that sucker may have spread in small ways, under the radar. While the big old, 'war of the roses', building castles of calcium, cancer was being beaten down by the chemo, and we were all happy dappy about that, perhaps the warrior, Mongol horde cancer cells were out and about, ignoring the chemo and setting up little invasion camps all through my body. Still too small for me to feel, but there, everywhere. That could've happened too. And who knows they could still be too small to detect. A clean bill of health next Wednesday when we get the surgery/tumour results does not guarantee that it will still be a clean bill of health in three months, six months or a year. 

    But it gets better. After the first year you start to move past the really aggressive dangers, you start to move into the slow moving cancer dangers. But I don't know. I don't know if I have time. I will never really know. Not anymore. Each day will be its own thing now. From now on that's the way it will be. Day by day.

    "As time and mass in a body approaching the speed of light differ from time and mass in other bodies, so these properties became different for him than for other people; time became greater in volume, mass became more porous and more easily penetrated. He squeezed years into weeks, days into minutes."

    Alexander Solzhenitsyn,Cancer Ward, 1966

    I am getting stronger for sure. But sometimes it does almost feel as if I am, "stirring" up dormant chemo, that there are bits of chemo in me, and when I exercise deeply I 'stir' them up, release them into circulation again and I feel a bit sick. Not full chemo sick, but also more than just sore muscles sick. It's an all over malaise that I feel.  It passes as soon as I take a break, get a rest from the exercise. And after that then I feel better, even better, because I feel the additional strength that I'm regaining from doing the exercise. But it's like an extra one step back that I have to go through now, that all over sick body feeling a day after exercise, to build myself back up again. 

    If I don't exercise now, I feel like I will carry this lingering chemo feeling around in my body for a long time, maybe the rest of my life, and I will stay weak. Better to get right in there and deal with it now. Now while I have time to do it for one thing. I have time to do an hour's exercise every day. Plus take a nap for an hour every day too. When I go off of disability and have to start really working again I won't have this time to both work harder physically and to rest up more. Two hours, that's two hours out of every day. 


    So. I don't feel well today. I'm glad I had my core exercise routine on Monday. Glad I got out of the building and took my railroad walk yesterday. But I did feel a bit sick yesterday and I do feel a bit more sick today. 

    This business of the steroids complicates things too. They say it's six months to a year before the steroids leave my system. So they are still affecting me. Now. Right now. Perhaps I'll build really big muscles doing these exercises?! Would I get kicked out of the Olympics if I took a blood test today? Do I have super powers at the moment? What happens when you add radiation to the mix? 



    “Out here, everything hurts. You wanna get through this? Do as I say. Now pick up what you can and run.” Imperator Furiosa, Mad Max: Fury Road, 2015

    Who knew that a badass, one-armed character from Mad Max would become my role model for getting through this? 

    It's almost 9 am. Time to get showered and dressed, time to go for my walk along the tracks. 

    Then it's putter around the camp. Make a drink from the rhubarb patch. Sit in the sun when it comes out and soak up a bit of cancer-curing, bone-saving vitamin D. But not too much. Cancer causing melanoma triggered by sun damage is also part of that story. Radiation up next on my cancer cure menu, but let's not think about that just now. Have lunch. Have a nap. Perhaps I'll have a fire tonight? That could be nice. I love to sit around a camp fire at night. Listen to the loons - and howl at the moon?

    https://www.warnerbros.com/mad-max-fury-road/

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