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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


  • 16 Oct 2018 6:12 AM | Contact Me (Administrator)


    Transformation begins tomorrow. It will be big, and it will be hard. In my whole life this will be the biggest, hardest thing I've ever had to do physically - and probably mentally too. 



    Tuesday morning. This is my last day. This is the last day of my old life. Tomorrow will be the first day of my new life. Tomorrow is the changeover day. Just like last week I cut all my hair off, and it was the last day of that long haired feminine self-image of me and the beginning of the new self-image all wrapped into one moment. 

    The things that have been leading up to this day were in the works for a while now. The suspicious inverted nipple and MRI experience a few years ago, noticing the lump late this summer, living with it through the start of the conference, and the holiday where we said goodbye to Moose and brought my granddaughter back with us, my sister and niece were here for a visit, and then the mammogram, and the big month of tests, the uncertainty. So it's not out of the blue, this turning point has been building for a while, I've been mentally preparing for a while. But it's like the haircut. It's one thing to know you have to do it, and to think about it and prepare yourself, and it's another thing when it actually starts to happen and it becomes reality. They influence each other, the idea of it and the reality of it. But the reality is the real part. And that begins tomorrow. 

    My transformation begins tomorrow. 

    Patients were treated with two drugs that sent them into complete remission. Then half the group received several months of additional drugs, while the other group was given a placebo. Once again, the pattern was consistent. The more aggressively treated group had longer and more durable responses. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    It will be big, and it will be hard. This will be the biggest hardest thing I've ever had to do physically. Less intensely painful than an abscessed tooth. Less dramatically life changing than having a child. More of a marathon of will and then I will become someone else. I know that. Stuff like this changes you. I'm okay with that. 

    In fact I wasn't really that enthusiastic about just continuing the same as I was, but getting less, older and frailer over time. I wasn't that keen on that version of growing older. So now we have this big turn in the road. It will take me someplace different. I'm curious. Suddenly my curiosity about life and the future is piqued again.

    How will my husband handle all this? Will it be the end? Or a new beginning? It will do something to our relationship, that is sure. How will I handle how he handles it, how will I feel about him? Our relationship won't be able to amble along in it's comfortable old way, it will change and refocus, and who knows into what. We shall see. Maybe it will be better, maybe it will end. Relationships do end over cancer. 

    What kind of life do I really want? What is my next stage? 

    Will I even have a next stage? 

    Stage 3, there is no guarantee with this stage, there is hope, and the stats are good enough to warrant giving it the old school try, but no there is no guarantee this treatment will even work. 

    So there is that. 

    And then there is me. How am I? How will I change? Already embracing the darkness more. And also, feeling more joy. 

    This part surprised me. The joy. Simply feeling so happy to be alive. I know they say that. I did not expect it. Each moment that I'm alive, not in pain, feeling life, I feel this hum of joy too. I felt this when I was pregnant with my son. Whatever shit was coming down about that, me being too young, too stupid, there was also this feeling of pure joy and happiness. And that is why I refused the abortion. The feeling of joy was stronger than all of the social pressure, shaming and bullshit like that. 

    It got put to the test. That baby cried all the time, on and off all the time. I was so alone in a new city, and so unused to it, I'd never been out of my family, and nobody in my new city knew me or cared about me, yet. I had some really dark and depressed times. Poverty, a crying baby, parents who disowned me, that severe loss of my own family, friends who didn't keep in touch, I have no friends from before that time. I have friends since then, but I lost all of my friends from before I got pregnant. Funny. This is the first time I realized that. That was part of it. It was hard. It was really hard. 

    What saved me? Frodo the cat. Me and the poor little rescued-from-a-biker-gang-kitten who used to hide under the piano all day and only came out for physical contact and warmth in the middle of the night when I was asleep, our growing relationship saved both of us. We were buddies. She lived to be 18 years old. We both got strong. We saved each other and both grew into strong independent females with full lives. And my son, eventually he stopped crying, we clicked, and he was always with me, my joy in watching him grow and develop, growing and developing myself as I saw the world through his eyes. That's what turned it around for me. 

    And making new friends. K. That is a friendship that has lasted until now. K is making me a warm hat for when my hair all falls out. She's knitting me a hat. We are still friends after all of this time, after all of these changes, she was there for me then and she is there for me now.

    The big turns of my life. Getting pregnant and married. Took me from childhood to adulthood in a rush. Getting that first good, cable consortium job - the reward for making it through that childhood to adulthood transition. My parents death. Painful - but it also freed me. Beginning my working girl life in earnest. The whole up north, travel the world single woman with grown children adventure. My kids meeting their spouses, settling down - and grandchildren. Meeting my husband, all of us changing our independent adult lives in that way. And now, getting cancer. Doing that story, facing death, being at the start of the "normal" death age anyway. That's where I am now. A big change. 

    This is the real transition from being middle-aged. This is the transition from being someone who is not all that different from my kids in their 40s, to someone else. And actually I am behind my kids on this. They have both gone through more medical shit than me. My youngest son almost died. It was touch and go for him. I am not that close to death yet. He is ahead of me on that one. My oldest son too. Long hospital stays in his 30s. 

    The sun is coming up now, it's windy and the light is soft and kind've purple/pink. It's nice. 

    Yesterday I did do my whole list. I did the basic house clean and vacuum. Watered the indoor plants, cleaned the bathroom and washed the kitchen floor. Check. 

    I sent out emails to another group of friends to let them know what is going on with me. 

    My friend P. She had cancer thirty years ago. She is a cancer survivor. She told me how she was teaching aerobics at the Y, she was super fit, and she got cancer. She felt that her body had betrayed her and she's never had the same relationship with it since then. She was doing everything right, eating right, exercising, she was super fit and she got cancer. She was amazed at how up front and out there that I've been about this. She kept her cancer a secret. She didn't even tell her mother. She didn't want her to worry. She was a young, single mother with a five year old daughter, not only going through the chemo and everything on her own, but also hiding it, the added stress of hiding it from everybody. I can't imagine. Partly I admire her strength, but also I think about her sense of shame and how rough that must have been. This is one of the good things I learned from my husband. This up front, just tell people what's going on and it always works out better. I learned the difference from watching him.  

    Yes it's true with my job that I could probably have gotten away with not telling them, hiding it, they won't physically see me until next June, my hair will probably even be growing back by then, just me with short hair. But what a lot of unnecessary stress to put myself through. And how many more chances for people to say the wrong thing, be hard on me and act badly in ways they would never do if they knew what was going on. 

    And in the end, life is too short. I used to be more secretive and prideful. I'm not so much now. 

    I can be open and reach out to people, let them know what's going on, I also have to pay attention that I don't let them influence me in ways that will/might hurt me. That too. I am the only one responsible for me. In the end I have to go through this myself. I can't offload it to someone else. I can get help, I can give other people the opportunity to act their best. I can change and enlarge my life. And we shall all see how we pass our tests on this. But I have to pass my own test, my own self. They can't do it for me. And actually I have to help them to get it right. 

    Yesterday I sat down and did the office work. There was a lot that needed to be done, there was stuff that I'd neglected when I was going through all the tests, and distraction, while I was away taking care of the grandkids. I hadn't really done any. This is a quiet time of the year. Yes, I could keep this office job going if I only work one week out of three. If everybody else does their part too. It felt good to just sit down and work my way through it, to do that familiar routine work. There is some other stuff I have to do, messing with my deductions. That's a different, bigger job. But it doesn't have to happen this minute, so I put it off. It can be a project for three weeks from now. I've got this office work on my to do list for three weeks from now. When I'm recovering, when I'll probably feel better. 

    Today. 

    Today is the last of get ready for tomorrow stuff. I'll go to the hospital. My husband will drive me there, I'll get my blood test, and take my paper work to the folks upstairs on the chemo floor. And I'm going to go over and visit the cancer support folks, take a look at their wigs and see about signing up for Tai Chi or Laughing Yoga. Just see. Perhaps even offer to help out at their knitting sessions. 

    That. 

    And then do laundry, pick up some little healthy snacks. My healthy comfort food.  Those last getting myself ready things. 

    I have nothing going on in my life from Wednesday until the end of the week. I will try to make sure I handle the fluids, eat right and generally move around. See how I am for  exercise, going up and down the stairs. I would like to be able to do a general house clean again next Saturday if I can. Just the light general house clean. I would like to start going for walks with my husband in the morning next week starting on Saturday too if I can. We shall see. We don't know yet. Just regular exercise, just what I can do, no pushing myself so much that my muscles turn into rapid turnover cells and get attacked by the chemo. But maybe that is all the first week? Maybe my body gets rid of the poison in the first week? Something to ask about tomorrow. 

    Killing a cancer cell in a test tube is not a particularly difficult task: the chemical world is packed with malevolent poisons that, even in infinitesimal quantities, can dispatch a cancer cell within minutes. The trouble lies in finding a selective poison - a drug that will kill cancer without annihilating the patient. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    But basically I have given myself all of the rest of this week off. No work. No housecleaning, us work either. No me work. I can sleep as much as I like, I'll try to drink right and eat right to save my body as much as I can. I will make sure I move around as much as possible and is comfortable. And I can read, or knit, or sit on the balcony and listen to music as much as I feel like too. All of it. I've given myself the whole rest of the week. And we'll see. We'll see how bad it is. I may be in misery and sleeping. My husband may need to help me to sit up and drink water. Or I may feel okay, just tired but okay and be happy to sit and listen to music, read a book or listen to a book, play my little phone game, knit for a bit, and then have another nap. Sleep in bed some of the time, have naps on the couch. Maybe it will be okay like that. I've given myself that space so I can do it without worrying. 

    And for today I have a few things to do. 

    Some exercise and a bath. Yoga but not weights? An easy, I can do this stationary bike? 

    I am thinking about the PET scan. About how I had to keep warm and not exercise ahead of time, so I wouldn't get my regular cells ramped up and dividing quickly. And then how they gave me radioactive sugar to see the cancer, because the cancer would be using more of the sugar than any other part of my body. 

    What does that mean for this chemo, and for my general recovery? How can I take that information and use it to help me get better? Use it to help outwit this cancer.

    Cancer is an expansionist disease: it invades through tissues, sets up colonies in hostile landscapes, seeking ‘sanctuary’ in one organ and then immigrating to another. It lives desperately, inventively, fiercely, territorially, cannily, and defensively - at times, as if teaching us how to survive. To confront cancer is to confront a parallel species, one perhaps more adapted to survival than even we are.

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    I feel like I should not exercise today, and that I should keep warm before the chemo day. So that my regular cells are not dividing. And I should keep warm during the chemo and when I get home too, in those first few days when it's in my system and working. I can’t help kill this cancer. That is in the hands of the medical professionals now. But I can try to help my regular cells as best I can. 

    And then after that part is done, that's when I need to exercise more and move around and get my regular cells into recovery. But stop in time for them to be rested for the next chemo cycle. Something like that. I'll ask about that tomorrow too. Make a list. Make a list of questions to ask the nurse. Remember what T said about finding a nurse that you like, that will go a long way to helping you get through this.

    It all begins early tomorrow. 9:00am. I'm glad about that. And the chemo part ends at 11:00. And I won't be alone. My husband will be around the office and nearby the whole time. So if it turns into some kind've medical crisis, then he can get me back to the hospital. Really this is as prepared as I can be. Get this day done and I'll be as prepared as I can be. I can settle in to sleeping, reading, listening, knitting, watching movies with my husband. 

    Dispatched: Oct 16


  • 15 Oct 2018 6:19 AM | Contact Me (Administrator)


    I am building this mental story, in it I have some control over this process. This is how I can be part of the team. I can help by exercising, keeping good mental health and not taking in any additional, recreational poisons. 



    Monday morning. Yesterday I washed the windows. All the fall housecleaning is done. It's all done. Yay! And the windows look good and let light in too. Yay. I feel pretty good. The pantry is done, the living room furniture is done and rearranged, the stairway is done, my windows are done, the kitchen/living room windows are done. It's all good the big projects like that are done. Yay. I did get it all done before chemo started. And I don't always manage to do a big change the house around clean up like that. And we have a new fridge and we have a new bed. 

    And I took a moment to look up my chemo stuff, make sure I understand anything I need to do ahead of time, anything I need to prep, make sure there aren't any pills that I needed to be taking ahead. And it's not so bad. It looks as if I take 1 anti-nausea pill 1 hour ahead, and then one a day for three days. I have extra anti-nausea pills to take if I need them. And then I have an anti-inflammatory pill that I take on days two to four of the chemo. They are steroid pills, they will make me feel energized at the time, and will also leave me a bit down and depressed when they wear off. So... At least I will know what’s going in. And they're anti-inflammatory, so presumably they'll keep my body from roaring up and fighting back. And then I start to recover. All this pill stuff happens in the first four days. So probably that is the most intense part for my body. 

    I will put my faith in science, even if this means that the dumb old body is about to be transmogrified into an evil clown - puking, trembling, swelling, surrendering significant body parts, and oozing post surgical fluids. 

    Barbara Ehrenreich, Welcome to Cancerland: A mammogram leads to a cult of pink kitsch,Harper's Magazine, 2001

    None of us will know anything for sure until we start. We don't know how I'll actually feel, how my body will react.

    I read up on some more of the side effects, and what to expect as far as skin and hair changes, nerve damage etc. So I feel a bit more ready now. Tomorrow when I go in for the blood test, I'll stop at the cancer support place, look at wigs and programs. And I'll take in my forms, double check to see if there's anything else I need to be doing, and then whee, we'll be in it on Wednesday. 

    Today I'm going to do the general house clean. Vacuum the rugs, wash the kitchen floor, water my plants, all the usual stuff. Clean the bathroom.  And then I'm going to do the office finances. Write my cheque, send out invoices, write the other cheques. Get that stuff done for the month. So that's the two things on my list for today. That will be a full enough day. I'll be where I need to be if I can get all that done today. And then maybe I'll knit a bit, finish the toque. It's nearly done. Perhaps even start the sweater. Or maybe I'll read my book. If it's nice out then I should sit on the balcony and read or knit. In the warm sun. This is something I can do, even in chemo mode. Go sit on the balcony & just watch the world go by if it's a warm day. This is the way I live. I make lists and I do the lists. I also throw the lists out the window and do friends/family as needed. 

    I’ll go forward from Wednesday seeing how I feel. Some of T’s comments had to do with the particular drug that she was given, it messes with your nerves and it causes both the chronic pins and needles that she has in her feet now, and also that hand or foot drop that she experienced during chemo. There is a specific drug that does that. I'll get that drug next. But it's not in the mix that I'm getting now. I'm not going to worry about it for now. 

    “After all… tomorrow is another day!” 

    Scarlet O Hara, Gone with the Wind, 1939

    Today will be a normal day, clean up the house, do the finances. Then sit around and knit and read and just enjoy the day. That's today. 

    I felt good swimming yesterday. I did my full swim schedule and felt good. This is great compared to last week when I was still sick, this week I felt normal. And my teeth and mouth are as okay as they ever are, and my skin is fine and even that turning the pork chops burn is now healing up nicely. So, I guess I'm as ready as I'm ever going to be. I would've exercised more leading up to this. I would've done the mountain walks, yoga/weights and got myself to a better place. But I didn't want to mess with that cold and giving myself bronchitis going into this. There is still a bit of cough, but I think I'm better enough. The swimming was okay. I think my body is as ready as it could be. 

    Tomorrow I have a few last things. The hospital stuff in the morning. A cancer morning. Then laundry and my own stuff in the afternoon. My husband and I sharing another last day/evening together. We do that part well. Remembering when it was time for Moose, we did that well. Both of us had the same instincts about what needed to happen. 

    Let's enjoy today. The sun is up, the sky is pretty clear and so this day begins. A nice homey day of just me and my husband. Some usual house work to do. Maybe I'll do my personal bills and stuff too while I'm at it, not much, just my life insurance really. Some usual office work to do. Then chill. Putter and chill. That's a good day. 

    I have already cut back on my coffee. Two cups a day. I've been pretty careful about that. I really enjoy those two cups, but that's been it. I don't want to get myself into headache-land while I have medical stuff going on, when I may have to suddenly do a fast with no coffee. And I've been good about the booze too. I had that one day, the big day actually where the doctor told me that I officially had cancer, that it was stage 3 and that it was going to be rough treatment - full on chemo, two different kinds. One for 4 months, the second for 3 months, so 7 months just for that. More than half a year of my life. Plus probably full on surgery and radiation. And then 10 years of hormone pills. All of it. And stage three. That's not good, that's only one stage before the last stage. I thought about buying booze then, I was alone. I could've easily come home and sat by myself drinking all afternoon. I thought about it. I had a moment of thinking about it. But I didn't do it. I also thought, no, I'll feel worse. And if I get into drinking to deal with this then I'll be worse as well. Alcohol is just another poison that I’d be adding to my system, wait for the weekend, have a glass or two of wine then as usual. And that's what I did. Those two things are under control now. I think I'm fairly solid on that. My addictions. Coffee and booze. Coffee is the worst (best) Both are under control going into this. 

    Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of disease. 

    Susan Sontag, Illness as Metaphor, 1978

    There are positive things that I can do, physically for myself. I can keep up with the exercise and general health stuff. Push my fluids, do the chemo faithfully, take my pills as directed. Exercise on my own. Push myself to exercise and keep that blood moving. I think that there are lose cells, it's not just the tumour. They haven't got big enough to start growing anyplace else yet - not to a detectable size anyway. But I feel that they are there. I think they are there because my lymph node has trapped cancer cells that were already on the move. How many other’s got through? And because the biopsy required five shots and it bled a lot I think that some cells could have got into my blood stream that way too. This is why I’m scheduled to start this aggressive systemic chemotherapy right off the bat. Stage three; danger, danger.  

    Illness is interpreted as, basically a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilization of will; that they can choose not to die of the disease. 

    Susan Sontag, Illness as Metaphor, 1978

    So, I need the doctors and the chemo, and the surgery and the radiation. I know that. 

    But I can help. I can help by exercising, keeping good mental health and not taking in any additional, recreational poisons. 

    I am building this mental story. This is how I can be part of the team. I have always exercised, I just need to keep it up. Fight those cancer cells. The selfish buggers that rob your body of nutrients. The selfish buggers that don't know enough to die and make way for the new generation. The selfish buggers that don't know that the other side of the joy of grandchildren is that you have to die to make way for them. 

    The mental story is part of the visualization I'm doing for myself. My part in this, being strong, taking care of my mental health, taking care of my physical health, helping the healthy cells by exercising and keeping the blood moving so it can clear out the dead stuff, and feed the good cells. 

    The cancer is there now. But the real fight only begins on Tuesday. That's when I get the big under-push to fight them. That's when I can help out to make it work. I know I can't do this just by exercising and eating healthy. That won't kill my cancer. The chemo will kill cancer. But I can help my whole body, I can help this whole process. I can help make it work. I don't have to be a passive bystander to my own body and what it's going through. I have a part to play in making this work. I will play my part. 

    I am preparing myself now. I am getting the visualization of how to do this. 

    And I'm going to come out better on the other end. 

    I will need to have a visualization for that new/different me too. 

    You start with the wrong presumption: Once a patient has entered the hospital, you do all his further thinking for him. All thinking is henceforth done for him by your regulations, your daily consultations, your program, the plan and reputation of your medical institution.

    Alexander Solzhenitsyn, Cancer Ward,1966

    This reminds me of when I was first pregnant. It reminds me of when I was the high-school dropout, seventeen year old mother. It reminds me of how I knew that the small things I did then, in that time would make the difference in how I came out of that. I could be a permanently poor, low class, welfare person for the rest of my life. Or I could become someone else. I listened to CBC radio. I kept improving my mind. I took night classes and adult-ed classes. I went to the library. I formulated a way to do housework and manage my meager finances. I loved being a mother. I made lifelong friends that I still have to this day. I fought my way through deep depression to do all this. And I came out the other end as a confident, competent young woman who took control of her life. And who had a good productive life that many people envy. I'm proud of myself. 

    This is another turning point for me. I can't just keep cruising the way I have been. I am forced to change and adapt. I got my haircut. And it actually feels good. It is a step on the way to the person I am becoming. It is a freedom from the person I thought I had to be. I don't mind being pushed.

    I am strong. I am ready for this. I'm ready to adapt. I believe that I will come out the other end of this better off than if this had never happened to me. Just like my brother. 

    So I have those things. 

    Yes, I am formulating my visualization. 

    Gonna do it with a little help from my friends. And my family. It's gonna be better on the other side of this. Better than where I was when it started. That's what I have to believe. 

    This is the start of my next phase. This is the real start of my next phase. 


    And it's true. I never thought that I would sail past turning 64 the age when both my parents went from two middle-aged people afraid of retirement to a hard death for each of them within the year without some life changing, forever-life-changing thing happening to me too. It's not correct or logical to understand their deaths in that way - that something catastrophic will happen when I turn 64 too, but that experience and their sudden ending as individuals, and as a couple, and as my parents is just burned too deeply in my mind for me to shrug and think logically that it couldn't happen again in the next generation. The instinctive learn-from-experience part of me learned that in this family, this is the way you die. And now the suspense is over. We are there, and we are in it. I am the right age. The catastrophe has hit me. But I will break with tradition. I don't intend to die.

    Dispatched: Oct 15


  • 14 Oct 2018 5:19 AM | Contact Me (Administrator)


    I do have to come up with some sort of visualization that will help me deal with this,  that will keep me strong, and positive, and helping myself. And believing that this treatment is really going to be worthwhile. 


    Sunday morning of my last weekend of feeling good before the whole cancer chemo treatment life begins. 

    And I realized that my brother had a benefit going into his cancer treatment that I don’t have. He was in pain and misery from his cancer. He wanted that cancer out because it was blocking his colon and making him miserable the way I wanted that tooth out when it hurt me so much. I get it. The problem for me is that I'm not in pain now, this breast tumour is not impacting my bodily functions - yet. I feel fine. Nobody ever died of cancer in the breast, the function problems with breast cancer only start when it spreads to other parts of your body. So it's harder for me to accept this aggressive treatment plan. It seems more like a cosmetic thing, it doesn't feel as deadly as it should. I don't hate my cancer the way my brother hated his cancer. And really, if this cancer just sat where it was and minded it’s own business, if it wasn’t on the march to get outside of my breast and into the wider world of the rest of my body, it wouldn’t become a problem in my life. I could live with it if it just stayed put. I don't feel compelled to get it out of me the way my brother did. I get how he must've felt. And I remember my abscessed tooth and how good it felt to get it pulled. Get it out. Now. I get the concept. But unfortunately for me in this situation I don't actually feel that way myself, right now, because I feel fine. This tumour is not actually hurting me yet. 

    And I realize that if I don’t have a bodily threat that I can feel and suffer from, to rail against, then I have to come up with some sort of visualization that will help me deal with this, and all the side effects, that are far worse than the cancer right now, and that will keep me strong, and positive, and helping myself. And believing that this treatment is really going to be worthwhile. 

    I don't have that yet. But I think my mind is working on it while I sleep. 

    I had a big nightmare last night. 

    It had a meaningful quality that reminded me of my old recurring dream. I call it the Zomibify Dream. My hiking friends and I ran into a sudden storm and took shelter in a mountain cabin over night. As it got dark zombies came out of the trees, and tried to get into the cabin. They were after us. We fought to keep them out. As a group we kept having to make these decisions, these ethical decisions, tough ethical decisions in order to save ourselves. We lost a bit of our humanity with every decision we made that saved us in the moment. And what happened is that by the time it was morning we were alive, and it was like the end of the nightmare. We went outside into the daylight, we had saved ourselves, and were outside and free. Relieved. Until a fresh new group of hikers showed up, a storm came up, and it started getting dark again. The hikers took shelter in the cabin but they wouldn’t let us back in again. We had become the zombies outside. When we tried to get back in - back to humanity the hikers were afraid of us, and rebuffed us. So we had saved ourselves. But at what cost? That one was a horrible nightmare, and it was a cool nightmare. It recurred a few times. And I still remember it. 

    Last night I had my first real cancer nightmare. 

    We were in a cave, by an underwater sea, on a small beach. In a cave, on a beach by an underwater sea. Deep inside the earth. Warm, mostly dark, and very still. Even the water did not move or lap at the sand on the beach. I was there. I could feel the sand between in my toes. And there were a few other people crowded around me. All women. It began with two women. Young strong women. One woman would flick a knife and blood would spurt out of the other woman. Sometimes it was a little flick that would send a fast thin spray of blood up into her face, sometimes a deeper cut that would send thick blood running in a slow stream down her arm or across her chest. It freaked me out. But the atmosphere stayed calm, nobody screamed. Apparently this was normal behaviour in this place. It was like an abuse where you're too afraid to scream, or craziness where you don't know what will draw attention to you and instigate more of this, or make you the next victim. We were all nearly touching trapped together on that small beach, in that deep cave. Nobody cleaned up the blood. There was dark stuff on their bodies that smelt of blood, and also the sea, that salt smell, things dying and the birth of life, a primordial sea smell. It dried that way. Patterns of blood spray on their faces like paint or makeup. Rivers of dried blood down their arms like veins on the outside. And it just kept on happening. These sudden flicks of the knife and more blood. Layers of new blood on top of the dried blood. 

    Nobody flicked at me. This was happening all around me but I wasn't part of it, yet. Nobody seemed to even notice me. They were completely focused on what they were doing. It's like I was invisible. It was a horror show happening around me. But the danger wasn't coming after me. I didn’t jolt awake. 

    Gradually I realized that the women were in pairs. One woman was always cutter and the other woman was the one who got cut. Every time. It wasn’t random. The woman being cut just accepted it. No screaming, no running away. Both women got covered in blood. But only one of the women was bleeding. Each cut was made before the woman who was being cut could prepare herself, or even flinch. There was no lead-up of fear or pain anticipation. It was just done quickly and efficiently. Purposefully. Not cruel. And it was done. The sudden spurt of blood. That's it. No reaction. The blood drying. Then another unexpected flick of the knife. 

    It gradually got lighter in the cave. It became apparent that our cave was under the ice, not under the earth. Someone cleared the snow on top of the thick ice and it got lighter yet. People looked down through the ice at us. 

    More people, tourists, started to arrive. You could feel land nearby, and tourists arriving. We were in some remote place, Alaska? That was dark and alone most of the time, but visitors came in the brief periods of warmth and light. Visitors came to see us. They looked down through the ice. And that is when I saw that the way all the cuts and the patterns of the cuts shone in that ice light and that the patterns moved with the women and that in that movement and light the blood itself outshone the women showed a vision. The tourists had come all this way just to look down and see the visions created during the winter by these pairs of women in that warm, bloody, salty darkness. The visions were painfully beautiful in that prismatic light under the ice. They were mysterious. But also they seemed to be deeply true. You didn’t have to solve the mysteries. You just had to feel them. That was enough. That is what the tourists paid for. They got their money’s worth. They went away happy with their notebooks and their cameras. And the darkness of winter came again. 

    Okay, that’s when I woke up with a jolt. I woke up before any of those women could look at me, notice me just standing around by myself doing nothing, and expect me to join in. 

    I woke up, I got up and I wrote it down so I wouldn't forget it. I got up a couple of times again as I fell asleep, as I got more ideas about that dream and what it meant. But in the end I fell asleep not knowing. 

    Now, after a couple of cups of coffee I think it is simply about the light that exists in darkness. That is the wonder of it. That is why the tourists and visitors come. They come to see the light that exists in the deepest, dankest darkness. They come to be comforted and inspired by that. Somehow I've been thrust into this cult of women who do are forced to do this. 

    This dream was not your typical pink ribbon, bright-siding visualization of breast cancer. It was deep, dark and fecund. This dream was not a natural outgrowth of the old charm school teachings, that generation’s approach to being a woman in this life. Or was it? Beauty was there too. When the season turned and the light shone in there was all the beauty, grace and meaning that the charm school workbook promised. 

    Mother. Am I going to finally make peace with you? Incorporate you into me and make peace? Or accept you as a piece of me, an integral part of me? These cancer genes that we share. Can I really say that you gave them to me? Where did you get them from? This is the curse that we both share. But we each get to live with it in our own way. You didn't give it to me, leave it to me, it's not that kind've inheritance. Not a handed down from generation to generation inheritance that fades and disintegrates with time and entropy. This is a gene that replicates itself anew each time. 

    So, that was my last night. I told my husband about the dream because I woke him up when I had to get up and write it down for myself. What are you doing? Dreaming. He likes to hear about dreams. He likes to tell his dreams too. But he didn’t write it down and so perhaps he has forgotten it. That was one night. Many more nights and days to go before we get a grip on this story. 



    Complementary Therapies, Guided Imagery

    Dispatched: Oct 14


  • 13 Oct 2018 6:21 AM | Contact Me (Administrator)


    We all laughed until our sides hurt. I didn't pee myself. But really, I haven't laughed like that for a long time. Good therapy. And then the next morning the pastor and I had a nice talk about death in the quiet before the rest of the house woke up.


    Saturday afternoon, back from the whirlwind overnight trip to visit the niece and nephew. 

    It was a good trip. 

    I'm busy, I feel like I have to do my own things to get ready, but I knew this would be important for my husband. And it was. The drive, him driving on the highway, me in the passenger seat was important for him. Us two on the open road. He loves that. Being with the niece and nephew, having their support and understanding was important for him too. And they were great. 

    They were ready for us, they made a fabulous meal - a whole beef tenderloin! Served like a chef would make it with mashed potatoes, veggies on top and the tenderloin. Such plating! And perfectly cooked too. And they made time in their super busy prime of life lives for us. We brought the wine, bottle of red, bottle of white, and a sparkling cider. We drank, we laughed, we told stories. They probed, they have recent cancer caregiver experience and they knew all the specific questions to ask. Stage. Grade. My husband was surprised to hear that it was a grade 2 cancer, a stage 3a cancer and he asked why I never told him. I got in the habit of not telling people those details unless they ask. I understand the doctors and nurses now, it doesn't really help to answer more questions than people want to ask. It takes too long and they don't really hear you anyway, because its complicated to explain and it's not the answer the were looking for so they are not really listening. 75% are alive 5 years later. That is the answer I listen for. That is the answer that I base my decisions on. This older book I'm reading says, 30 to 60 percent are still alive - so things have improved that much since that book was published. And what does that mean really? The niece who is a journalist reminds us that  that number is an average, and that includes all the people in small towns and cities who don't have the benefit of being in one of the world's leading centres for this breast cancer. My odds are better than average just because of where I am being treated. So that was nice to hear from her, and probably right too. 

    But the fun part was talking at dinner. The topic of conversation turned to the benefits of massage during cancer treatments. Pros and cons.  Different kinds of massage. My husband started telling this story about being horrified at the idea of an intensive massage, but he had a word slip and said invasive not intensive. He described having an invasive massage, a naked invasive massage. We all laughed until our sides hurt. I didn't pee myself. But really, I haven't laughed like that for a long time. Good therapy. Laughter. 

    And then the next morning the pastor nephew and I had a nice talk about death before the rest of the house woke up. 

    He told me this story/metaphor about the process of dying, finding out it's terminal. “It's like sky diving. When you first jump out of the plane it's exhilarating, there is this big rush. Things are going fast, there is a lot of noise and it's very exciting. And then you pull your chute and everything slows down. It goes quiet and you're just floating and it's nice, and you're looking around, floating and it's beautiful, and calm, and quiet. And that's the longest part. Then you realize that you're getting close to the ground. The ground is rushing up at you all of sudden, and that is scary again, it's a rush again at the end”

    I'm not terminal, but that is the way I felt during this past month when at first they thought I had the super aggressive kind of cancer.  

    It is a good metaphor. First I was freaked out, and we did all the tests and I was busy with the medical stuff. And then it stopped. We didn't have results, I was floating while I was away in another world taking care of the grandkids. And now, it's rushing back up at me again. It will start up again when this weekend is over. It will start up in earnest on Tuesday morning when I go to the hospital to get my blood test. And then Wednesday they're going to start killing these bad cancer cells, and a lot of good cells too. 

    Metaphorically it’s time to get that tooth pulled. This job is too big for my body, it cannot solve this problem this on it's own. It will happen slowly, and damage a lot of other tissue at the same time, but I believe that it’s the only way to save the whole being. We won't die of this - me and my body. I am not dying yet. In ten years it might be my turn, but I'm not there yet. That day is not today. 

    Again, the question must be asked: Does the benefit outweigh the risk? 

    Rose Kushner, Breast Cancer, 1975

    And I also saw two different visions of this chemo stage. There was T talking about being out walking with her son and suddenly not being able to move her feet. And when she finally got moving and in the door she kept on going right up to bed and went to sleep because she knew if she stopped at the doorway that she wouldn't be able to get moving again. And the tip from the niece was that when the grandfather just put a glass of water on the table for his wife it wasn't as good as when her son went in, and made her sit up and drink the water before he left the room again. She got dehydrated when it was her husband just leaving the water for her, and not making her sit up to drink. Two different pictures right there. Two different pictures of how debilitating chemo might be. Outside walking but can't lift your foot. Can't sit up to drink water.  I want to be more like T. I am that kind've athletic person. I know how important it is to get up and get moving as much as you can even when you are sick. It's important to sleep. Yes I know that too. And it's important to get up, get moving, get your blood circulating as much as is possible. 

    It is benefit versus risk from beginning to end in dealing with all cancers. 

    Rose Kushner, Breast Cancer, 1975

    The process is toxic. Basically it's poison. Different cells in your body naturally reproduce and grow at different rates. Heart cells hardly reproduce at all, that's one of the reasons you don't hear much about people getting heart cancers. Hair cells reproduce at lot and your hair grows a lot more than your heart. The drugs will kill the fast growing cells in your body, and then leave your system, and leave the slow growing cells to continue their lives. That's why you live and the cancer dies. You are mostly slow growing cells. It's mostly just your hair, your digestive tract, and your white blood cells that reproduce fast enough to get caught by the same poison that kills the growing-out-of-control cancer cells. What happens is that all those cells die. Not all. A lot of those cells die. That's why you have more than one round of chemo, each time more cells die until hopefully it's all of the cancer cells. And your body is full of the poison that killed them. And it's full of the dead cells themselves. Cleaning out that mess. That's a lot of work for your body to do. And in between rounds you need to rebuild and recover so that they can do it again. They keep doing it until they get the cancer gone, without killing the rest of you. That's our job now. Mission one. I get it. I have that general mental picture of what happens with the body and how this works. 

    My best chance to kill all the cancer cells is to get through all of the rounds of chemo on schedule at the full dose. Other patients before me have suffered through dosage trials in order to confirm that for most women, with this type of tumour, this is the most effective poison plan and that this is the best dose to do the job without actually killing me too. Respect that. 

    If had been a candidate for one of the new, just being developed treatments I would not have the benefit of all those years of trial and error and understanding of the typical side-effects to comfort me. Stats on survival rates would not be as reliable with smaller numbers. It would be more experimental. Unpredictable. 

    I respect and honour all those women who are, and have been, on the front lines of experimental treatment. They take the risk for themselves, but also for the rest of us. 

    I went out and got my beverages. You have to help your body by drinking plenty of fluids. Ten glasses a day at first. But not just water, otherwise you'll turn into the bad scene that happened when I drank just water for my first colonoscopy. It needs to be a mix of broth, gatorade, water and fruit juice. 10 - 8 ounce glasses. That is what is written on my instruction sheet. This is the first three days. The nausea drugs are for the first three days too. So I guess that’s how that's going to be. Those first three days. And then it's rebuild and recover and start coping with the results of all the death of all those good cells too. Stomach problems maybe, lower immunity and maybe skin problems, hair falling out, dead at the roots. What will that tell me? Cancer cells just as dead, that's what. Die cancer cells, we don't want you taking over my body and my life. So long hair cells. We’ll see you on the other side. 

    In the meantime, while I wait for a break-through, along with thousands of other women, I know we do not have to give up and die of breast cancer - even without dramatic new advances. With what is available now, women can live symbiotically with the disease while scientists continue their search.

    Rose Kushner, Breast Cancer, 1975



    Breast Cancer Stages



    Stage 3 Breast Cancer: Understanding Your Outlook


    Dispatched: Oct 13


  • 12 Oct 2018 6:33 AM | Contact Me (Administrator)


    It was giving up a whole adult life of my beauty and sexuality being tied up in my hair. And then it was done, and I had short hair. We both looked at the mirror in surprise. I looked good! 



    Friday morning. Early, 6:18 and I'm up, on my second cup of coffee and finished all my newspapers, finished reading all my lovely Facebook likes and comments on my new haircut. 

    My new haircut. I have super short hair. I got it cut yesterday morning. I had to do two rounds around the block to get cash, I forgot my wallet the first time, and our corner pharmacy was closed. So, I came back, got my wallet and did it again. That is how my day started. Getting cash to pay for my haircut, and taking in the prescription for nausea medication to go with my chemo. Having to take two runs at it in order to succeed at those two simple tasks. 

    The pharmacy lady was very sympathetic. She got the whole story right away as soon as she looked at the prescription, she was worried about me. The government pays for a lot of this medication, but I still had to pay $50 bucks myself. I'll have to pay for it myself each time, for each of the 4 chemo treatments. Here is what is encouraging to me about it. It's a three day course of anti-nausea medication. So. Does this mean the worst, nausea part will only last three days, and hopefully this stuff will do the trick. One day people will look back on this treatment and will be horrified that people actually went through this, that so many people actually went through this. But for now that's all there is. For now the other option is to just start dying now. 

    And really, I guess that is my natural death. And I did say that my worst fear was having to live beyond my natural time. So. I guess I am a hypocrite. I do want to take my shot at living to 80 after all, if it's this, then so be it. If it goes as planned it will be bad, but not that bad, and then I'll be on the other side. So. In fact I am extending my life beyond it's natural span. This is my first step of doing that. Everything else, except for getting that infected tooth pulled has all been stuff that I would've lived through anyway. I wouldn't live through this. If I didn't do the chemo, and the surgery and the radiation then I would start dying now. The cancer would gradually spread and in three or five years I would be dying for real. I'm hoping to extend that, by going through this bad time now. That's why I'm doing it. 

    There are a lot of websites, books, and articles about alternative treatments. But I know that the alternative treatments do not work to cure cancer. And in some cases they hasten the death. And many of them make you really miserable, just from the treatment itself and so make it worse. So, this is the option I'm going for. It is realistically my only option even if I don't like it.  Right now that's all there is. Do what the doctors tell me, and even if what's going to happen to me is crude and barbaric, it does seem to work pretty good. And there is a 75% chance it will buy me those extra ten or fifteen years that I'd like to live. 

    But that was not my day yesterday. Not mostly. 

    My day yesterday was taking care of myself, doing things for me, for me to get ready for the results of the chemo, for me to be as prepared as I can be, before it actually starts so that I can be comfortable as possible, as supported as possible. 


    And the haircut was a big one. The haircut was a near tears event, repeatedly. And if I had been at home I would've cried, I would've sat down and had a big, good cry for my hair. I loved my long beautiful hair. It's been an important part of my identity, that long silky blonde hair. And then recently, that shiny, blondish grey bob. And it's been my bit of glamour. My hair. I always felt beautiful and feminine with my long hair, that did it for me, I didn't worry so much about jewelry, makeup, earrings, even sexy or glamorous clothes, even a good body, that was never part of my good body ambitions - those things were always fitness oriented, about professional respect, never about me as a woman, never about me as sexy, beautiful, glamourous. I let my hair do all that for me. 

    That was me. 

    I got my hair all cut off, short, yesterday. 

    Suddenly I was right up against it, and I had tears in my eyes as the guy washed my hair and I tried to compose my words to Francoise, who has been cutting, trimming my hair for almost twenty years. I tried to get the words right to tell him we had to cut it all off because I was going into chemo and it was going to fall out anyway. I thought I would have to explain about chemo to him. Why I needed a short haircut that would look cute and fun now, before it all falls out, and be something that I could look forward to after it starts to grow back. 

    It was giving up a whole, adult lifetime of seeing myself one way. It was giving up a whole adult life of my beauty and sexuality being tied up in my hair. Not in my breasts. They are neither here nor there to me, yes they are part of my sexuality, but they are also functional, part of feeding children too. They were never part of my identity to myself. 

    So for me the hair really was the big trauma. Even if it will grow back. Even if I will probably live through this, and then live long enough afterwards for it all to grow back. I was losing an important part of my idea of myself. 

    But I wasn't going through the trauma on my own. Francois got it. He's had lot's of clients go through chemo. He's done lot's of pre-chemo haircuts. And he's cut my hair for so many years that he knows how important the length and texture is to me. And he loves my hair too, he’s been proud of my hair. It was a trauma for him too. 

    We laughed and joked. He gave me a really cute, modern looking cut. I actually look pretty good. My husband took a picture of me and I posted it on facebook lots of likes and lot's of good comments. Only a few from people know why I got the haircut. 

    So yes, I have just killed someone that I've been all my life. But, thanks to Francois who got it, someone else was born at that same time. And it's interesting. Both of us were surprised. And pleased. During the cut it was a bit heavy. And he did also give me good advice about getting cute little sporting caps like the snowboarders wear, with an open top, and they don’t look like old diva chemo hats, to wear inside, around the house. Why? because the hair falls out every where. You'll be cooking dinner and hair falls in your food. You'll wake up in the morning and there'll be hair all over your pillow. Wear these little caps and then it's not such a problem. You just take them off and shake them out, and all that hair gets dealt with. It will take longer than you think. After they stop the chemo it will take three months for the hair to grow up to scalp level, and then it will be another three months after that before I will have hair long enough for him to be able to cut it into this short style again. I have six months of treatment coming up. Enjoy this short hair now, it will be another year before I have hair, even short hair again. 

    That was the process of the cut. And then it was done, and I had short hair. We both looked at the mirror in surprise. I looked good! It was a good cut. I looked bright and fun, modern and more fashionable. Really maybe I should keep my hair short like this even after it grows back! It was a new me. And it was a cute me. And it was a strong looking me. And it wasn't a mannish me. I looked good. Genuinely good. Maybe not so glamorous/sexy. But what the heck, I’m over sixty. This look was both fresher and younger, fun. And also stronger and more confident. Professional. Interesting. Older and younger both at the same time. Still grey but it was a younger person's cut. 

    That was step one. And that was the big trauma. And it was okay. I'm ready now. I'm through that. I had a good cry, my good cry writing this, finally got to have it and let it out. Had that moment of mourning for that old me. And I am feeling good about this new me. 

    I did like to catch site of my reflection yesterday afternoon. I did like all the likes and wow's you look good on Facebook. I did send a messenger pic of it to my granddaughter, and she did respond, cool, I like it. I feel okay. 

    After the haircut I went on the rest of my, me excursion. I went to the department store and I had them do a make up for me. I told the lady I was going into chemo and wanted to have a new make up for when my hair all falls out. She was great. She did the makeup and she spent the time working through their foundation options until she found something that worked and looks good on me. So, now I have some better options for my skin, better eyelid stuff, she gave me this "base" that keeps the eye shadow from sinking into the little cracks and looking terrible. It really looked good. And she showed me how to contour the colors on my eyes. And what not to do. And she solved the foundation. That was the main thing. So now I have a range of make up options and if my old, favourite foundation runs out, I still have something. And they've invented a better mascara too. Since the last time I bought make-up. So that too. 

    And it was fun just sitting there and getting it done and being fussed over in that way. And you know, this is what I did when I was a teenager. When I was so geeky and awkward, and picked-on that my mom put me in "charm school" at the local department store to try and save me from all that social distress. It was my dad’s idea, he thought it would help me, that that was what young women had to do to keep from being picked on. I was thirteen. In charm school they taught us how to wear makeup and dress nicely. Not quite walking around with a book on your head lesson in how to be a lady, but along those lines. For the little graduation fashion show the hair stylists put my hair up in a French twist because I would not let them cut it into a more fashionable style. That was my first ever glamor moment. Those stylists stepped back and went wow and praised each other for how good I looked, how well that European style suited me. 


    But my favourite moment, my favourite memory and where I learned that you have to take all that ‘social’ advice with a grain of salt was putting on nylon stockings for the first time. I’d shaved my legs for the first time too, and they felt kind of numb and weird without hair. Mom and I were in the department store change room, she was helping me get dressed for the little fashion show. They taught us to wear cotton gloves when we put on our stockings so we wouldn’t snag them and create runs. This world and it’s rules was all just as strange to my Russian peasant immigrant mother as it was to me, hence the need for charm school. I went to put on that stocking, wearing the gloves so I couldn’t really feel anything through my finger tips and I pushed my foot right through the bottom of the stocking. Not just a snag - the whole foot of the stocking was gone! We both just stared at it in shock. We laughed so hard! It’s a wonder I didn’t pee myself too. And luckily my mom, in her own peasant wisdom had thought to bring a spare pair of stockings, just in case. 

    She’d already survived melanoma, and our relationship was complicated. But at that moment in time breast cancer was still in her future. 

    I used to get my make-up done for free at that same department store. Now I’m in a different city, but it’s the same department store and they are all laid out the same.  So it was like stepping back in time. Being a teenager again. Being on the cusp of being a new me. Changing. Part of the ritual. Go to the big store of normal and get lessons. The last time I did the make up thing was at our local drugstore, it was the on-the-cheap version, I needed makeup armour for a teaching gig. I was going to teach filmmaking to a room full of high school kids. And I figured I needed a successful filmmaker look to survive the first ten minutes before they really got into the fun of the class itself. Getting makeup to teach school. Thirteen year olds. 

    So that was good. I think the makeup was a bit harsh, and I'll do a toned down version for my real life, and I'm looking forward to trying it today. Washing my hair and my face and trying the haircut and makeup, adapting it to my real life. Fun. Making lemonade. 

    And then it was off to the library. I returned my book. I got some cancer books. I didn't even think of cancer books before I went in, I was mostly just going because that's a part of my life, one of my anchors, going to the library. I didn't want to get any more cookbooks, much as I love them. Cancer books. I took out three cancer books, one is the biography of cancer, the Emperor of Maladies that looks at cancer over human history and how it's been treated, and regarded, and affected people. It will be good to read that, because while I'm not beating myself up with ideas that I caused this cancer, I admit that yes, I have been over weight, and yes I have eaten sugar, and other simple carbs, and yes I have stress in my life. And I know the environment I live in is full of the kinds of hormones that my cancer likes to feed on; plastics, even the coating on receipts, and in the water, not filtered out, everybody’s birth control pills, hormone replacement pills. Enough to make fish go weird. Even though I wasn't blaming myself. Even though I was thinking - age first, genetics big too - this is exactly like the cancer that mom had. Then environment next. And me being overweight before I lost all that weight last year, and eating too much sugar only a contributing factor not the whole story, not all my fault. 

    Even though I am trying to avoid the whole shame and blame side of cancer of course I still wonder how much of this is my fault? What else could I have done differently? So I think that even before I start reading this book it is good to know that cancer has existed through human history. It only seems so prevalent now because we are living longer, more of us living long enough to get it. And also that we know what it is. As I told M the bookkeeper, in the old days I wouldn't know I had cancer now at this stage. It would just be old age breast changes, and I would live another 2 or 5 years before I started to die from a full body shut down of different organs failing. That would put me at 65 to 70. A generation or two ago that would've been dying of old age, dying of natural causes. 

    And really. Let's face it. I am getting close to that dying of natural causes age anyway. It's worth it to go through this now at 62, but if it comes back in 10 years, would it be worth it to go through it again when I'm 72, trying to buy the years to get me to 82 or 83? The new normal lifespan? I think perhaps not. 

    Here is my problem with these late life interventions. They don't prolong life in any significant way. But they do interfere with the process of dying. There are things you have to do when you are dying. It's a job. It's a sad, hard job, and there are things you have to do. You have to talk to the people you love, and who love you. You have to touch them, and they have to touch you. You need to make eye contact and see into each others souls for a bit. It's hard, it's painful, but it's better if you do it. That is a natural death. You can't do that from an isolation room. You can't do that if they removed your throat and a big part of your chest and stomach. When it gets to that point you have to stop them from doing the things that will mess up the work you have to do in order to die properly. For the people who love you, for your sense of right to the people who love you and will miss you and who will have to go on without you. When you can't live any longer, they you owe it to yourself and to them to get on with the dying process.  

    But not today. 

    Today I have some cancer books to read. And I have some novels to read. And I have a line on some good audio books to listen to. 

    And I have my new short hair do, and I've taken control, and with the help of my hairdresser have re-invented myself and my look, before the chemo even starts. While I'm feeling good. I'm getting comfortable with this new, not relying on hair version of myself. I am the boss of how I see myself as I go through this. That was money well invested, even if this cut will only last a few weeks before all the hair falls out anyway. 

    And I think that maybe it will be good for me to let go of the hair, and look at the rest of myself differently. I think it's probably time I did that anyway. 

    And I did go sit in the greenhouse for a while. And I did remember all the fun times I've had in there with the grandkids. Funny how the library has turned into this great place that I share with the grandkids. And it always brings back nice moments for me to simply be there. 

    Then it was off to the yarn store. I got that last ball of wool to finish the toque for me. Yay! I can finish it now. And I got the nice store lady to help me buy the yarn to make a sweater for my granddaughter. Maybe even for Xmas. We'll see. I have knitting to keep my hands busy and some nice yarn to work with. 

    And the day was filled with virtual likes and nice comments on my short hair, even if I was roaming the streets by myself just being this new short haired person in front of people who'd never seen any other version of me. Interesting too. 

    There was a Kentucky Fried Chicken place by the wool store. I only noticed it this time. I almost went in. And in fact, if I could've gone in and sat down to eat a dinner for one, I would've done that. I would've done it as a solidarity moment for mom. Whenever dad was out of town. Whenever she was alone with us kids Kentucky Fried Chicken was her big treat. My mother who has been through all this breast cancer herself. My mother who gave me these genes, and who would never have given them to me if she had any control over where your genes go. My mother who got her genes from her mother. My mother who watched her own mother die of cancer. My mother who was a teenager helping her mother die of cancer in their house. My mother who was always resentful that she had to do so much extra work, grown-up work because her mother was dying and couldn't take care of her family anymore. 

    This is the very first time I'm seen her that way. This is the very first time that I understood what she must have felt when they told her that she had cancer. This is the very first time that I've understood our complicated relationship after Dad got me doing all those mom things, cooking and cleaning while she was in the hospital being treated for melanoma. I was eight years old. She came back and I was critical of the way she did her housekeeping work compared to the way I did it while she was in the hospital. This is the first time I realized how traumatic that must have been for her. My mother and her father left their small prairie town after my grandmother died. They left and never went back. The two of them left together and moved to the mountains. Now I have a new lens to see that whole story. Interesting. 

    I would have stopped and sat alone eating my KFC, thinking of mom. And also my brother. Closer in memory is the time that they made him stay for an extra day in the hospital after his lung surgery. He was so mad! He was so ready to get out of that place. He asked me to get him KFC take-out for supper that night. The judgemental looks from the nurses when I walked onto his floor. This is not health food. And how strong it smelled. And how satisfied my brother and I were to share that dinner, remembering mom, without saying, and just enjoying it together. Being bad kids in the hospital together. That secret treat feeling. We liked that too. Us two. So it would've been right to have a KFC moment yesterday. But when I looked in the door it was only a take out joint. There wasn't even one little table or counter to sit at, so just took a big whiff of the smell, and I let it go. I did it in my mind only. 


    I had truffle filled brie cheese on crackers instead, with a glass of my husband’s homemade, artisnal tonic water. Then a supper of rice, broccoli, and lamb chops with pea greens. That is how we treat ourselves in this house. 

    And it was a totally me day. It was a spoil myself day. And I don't do that very much. It was expensive too. Hair, makeup, yarn. I feel okay about it. For one thing, I know how important mental health is. I know this was worth it. I know it will comfort me in the days to come when I can't go out and do these kindnesses for myself. 

    We are going to visit the niece and nephew this weekend. It will be good for my husband. I think he needs their support and it will help him adjust. He originally suggested that we postpone this visit until after I start chemo. It was the nephew, who’s gone through this with his mother, who said that I’ll go down really fast once the chemo starts and if we want to do this visit we should do it now, right now, before the chemo starts. So we are off for a sudden little mini-holiday with the relatives this weekend. 

    Both of my granddaughters like my new haircut. My two granddaughters who may very well have inherited this gene and this cancer. My two granddaughters who might one day be going through this very thing themselves. I go through this as an example to them too. I try to go through it in a way that I'd like them to be able to start from and improve on in their own life. Whatever I go through now, whatever pain in the ass suffering I go through, hopefully I'll survive enough to be a positive story and example to them. And if not, then at least a realistic, and still good story,  example of how to die. Either way. 

    I'm an elder now. This kind of shit is my job now. If it's not cancer this time then sooner or later it will be something else. And it's better than the alternative which is that they will die before me. Kids expect that their grandparents will die in their lifetime, just as we expected that Moose would die in our lifetime. It doesn't make it easy. But it's not a shock. It's not "wrong". There is nothing "bad" about it. It's just the nature of life. Death is the nature of life. Death is kind've what defines life, in my books. 

    Alright. Enough philosophy. I have a normal day to do. I have work to do, And I have to clean up this makeup mess. And get something to eat, have a bath. Do my hair and make up as if I'm going out. And in fact I am going out later today. And then I have to get on with a normal work day of paying bills, sending invoices and taking care of business. Get that done. Then enjoy the weekend. 


    Dispatched: Oct 12


  • 11 Oct 2018 6:17 AM | Contact Me (Administrator)


    Calling on my old friends. Reaching out to my family. Touching my toe in new territory to find new friends in the official cancer support world. The ‘inciting incident’ has happened. This journey will begin. The diagnosis is my pass key into the story. I have been chosen. Time to gather the fellowship. Try to be the hero of this story. 



    Thursday morning. Drinking my first cup of coffee. My phone alarm went off at 6:00am. That's my signal to wake up, get up and be ready to poke my granddaughter, and drive her to school for 7:00am. That's what's going on with son right now. In this darkness I can feel the darkness of their house, that basement room, getting up and making myself the first cup of coffee in their house, that routine. In this darkness in this apartment it feels almost the same, I feel almost as if I am there right now in the pause before I set the household in motion.  What is missing? The little black and white cat that was my buddy, coming in at first light, sitting on my lap purring. I miss our little purring moments in the quiet parts of that busy household. 

    But now I am here. In this apartment. And I am not going to be taking kids to school. I am getting ready for “The Journey” as T - who has been through ovarian cancer twice - calls it. My own cancer journey starts next week and I have to get ready for it. I have things to do. And not that much time to do them. Making a list and checking it off. I'm back to that now. 

    The only sensible thing was to adapt oneself to existing conditions.

    Franz Kafka, The Trial, 1925

    Yesterday was telling my boss day, getting things set up as far as work goes, as far as the disability insurance goes. But it started with telling my son. We had a good long chat first thing in the morning. That was the priority, to tell my family. Let it spread out from them. Tell them first. And my son was the last of them, first thing in the morning. Then I moved on to telling my boss. He was great. 

    We had a good phone chat, his wife had breast cancer, surgery and radiation. He offered to look up any medical things for me if I had questions. He’s a science writer he has all these connections and that ability to make it understandable in normal person words. I said that I would keep it in mind, but so far I felt like I had a good team, and that they were giving me good information that made sense. And he told me the most important thing was my health and that our little non-profit would muddle along okay and for me not to worry about it. I told him that this work was part of my mental health, that I loved doing the work and working with the people and so wanted to keep on as much as possible.

    I talked to my agent/friend about the disability insurance. It starts up after 120 days. And then they pay me retroactively and start paying a monthly stipend. It almost seems not worth it, it's not very much money, and it will end almost as soon as it starts. But I've decided to go ahead with it anyway because, because what if this all goes south, what if it goes badly and somehow I do get permanently disabled? Then I will still have this bit of extra money every month, at least until I get to 65. It will help. And it will be easier to start off now, when it makes sense, than to try and prove a permanent disability out of the blue later on. So. Yes, I will start it. 

    And yesterday was also the second wave of friend conversations. I had that good long talk with T. A good heavy duty medical talk: symptoms, chemo words, resources, and how to use the resources. And I realized that I'll be going bald in toque weather. This was when T had her first chemo. She said it was easy, you just wear a toque everywhere, it's expected in winter and no one knows you have cancer. It's not like in summer when you are trying to wear scarves. That stands out. But you have to wear something, even to bed at night because your head gets cold when you don’t have any hair.

    What days were lying in wait for him? Would he ever find the right path through all these difficulties?

    Franz Kafka, The Trial, 1925

    I went through my winter clothes and realized that while I have a ton of scarves I only have two toques. And one of them, while cute, is itchy. This is how my friends and family can help. I asked my sister to knit me a toque if she's got some leftover nice wool, and my oldest friend K is a knitter too. It will make all of us feel better. I will feel better when I'm wearing their toques. And they will be happy to do it. And I can keep and treasure them, my cancer support toque collection. And it's not hard or expensive to make a toque out of your leftover yarn. 

    My daughter-in-law’s father is a cancer doctor. She suggested I call him if I have questions. Again I said thanks, but I think I’m good on that information front. 

    Why? 

    Because in my heart I knew it was cancer myself, from the beginning. And then after all their tests, and alarms of what it might be, in the end it turned out to be my mother's cancer after all. I recognize it. It is that not especially aggressive cancer. This is what she had. She had it in her left breast. I have it in my right breast. That's really the only difference. And time. And the change of treatments. More sophisticated. Perhaps. But, I feel confident in them because after all their tests they found what I thought it was going to be in the first place. And I am a bit better off than she was. She was in her 40s, before menopause, so she also went through a hysterectomy and that sudden instant menopause. And she had three lymph nodes involved. I only have one. This is not an unusual or weird cancer that they don't know how to treat. It's in the pretty normal, as breast cancers go, range. So, no I actually don't have any questions. I don't feel like I need to find out about any experimental treatments, or question what's happening now. They have a pretty good success rate for doing it this way. With this kind of breast cancer. So, let's just do it. 

    Today I'm going to get my super short haircut. I think that's when it will start to really hit my husband. I'll look different. Every second of every day I'll look different. This is the first step to becoming someone different. He's been hounding me to get this kind've super short hair cut ever since I met him. But I don't think he'll like it. 

    That happens this morning. At 10:00am. By noon I'll be shorn. It will be a shock to me too. I'm inclined to go straight from the haircut to the makeup place. To not come home first. Go straight from there to the make up and then come home with my whole new look. If time weren't so tight I think I would've done the make up first. So I could see my first look at myself all shorn, like for the army, like for prison, like for the loonie bin - I have no good mental stories of myself with short hair. No mental images of being cute in short hair. I'll need the makeup to go with it. I'll need to look at myself and see the makeup too. More pretty. 


    If I had really known, if I really had lot's of time to prepare, what would I have done? I would've got my teeth fixed. I'm a bit worried about them acting up during the chemo. And I would've got my ears pierced, so that I could wear earrings and be more feminine even if I am bald, or have short hair. But it's too late for that. So I will have to make do with a new makeup. And who knows, maybe I'll like this me. Contacts. Make up and contacts. A pixie cut for me. A stage between now and being bald, and way to see what I'll start to look like at the other end too. After I’m done being bald it will be a while before my hair grows back to where it is now. I like my hair. It's been an important part of my look and more than that, my identity. I liked it grey as well as blonde. I like the soft silkiness of it. 

    That is my goal for  today.  Start changing my "me". Start by taking control of my "me". My look. The short hair as a first step. Then toques made with love by the hands of my closest friends and family when I'm bald. Paying attention to the whole no hair part - that actually is important. I’m doing that today. And I realized that I can at least put on the make up that I have today. I forgot about it because I rarely actually wear make up. Usually it's just when I'm going out and have to put my best face forward. I think of it as putting on my armour. This morning. I can do that ahead of the haircut. And I can put on my contacts, so I get a better sense of "the look" that I'll have. At least do that, and then go get the professional make up done for free at the department store in the early afternoon. 

    As my cancer career unfolds, I will, the helpful pamphlets explain, become a composite of the living and the dead - an implant to replace the breast, a wig to replace the hair. And then what will I mean when I use the word “I”?

    Barbara Ehrenreich, Welcome to Cancerland: A mammogram leads to a cult of pink kitsch,Harper's Magazine, 2001

    And then I guess I should call the support group people and get myself started on some of those support programs. I can plan to stop in to their building on Tuesday when I go for that pre-chemo blood test. See what's there, see what I can sign up for and do with them. I can do all those Tuesday things, because I'll be feeling good on the Tuesday before I have to go for my chemo, and I have to go all the way out there then anyway. Hoping that the laughing yoga will be available sometime before I'm through all this, and even if not, then I can still pick it up later as a survivor. They like to keep us survivor's around to encourage the rest. I gleaned that from the pamphlets. I may make new friends in this group of people. A new friend is a special and rare connection, you can’t expect to just make new friends in a new environment, but a cancer support group when you have cancer is probably a good place to be on the lookout for new friends. 

    So the little list is done. Reminders to go get those anti-nausea pills today, my day is actually filling up pretty good now. And my weekend. And my Monday, and my Tuesday. And then I'm in it. And I've started to make a little list of things to do for when I'm in that third week and feeling better. And starting to think about this no pressure, let myself just sleep or whatever for those first two weeks. No schedule. 

    Except. Except. I heard T when she told me about how she went swimming twice a week the whole time she was going through chemo, and made herself take a walk, at least twenty minutes everyday. But also she told me about the time she was walking with her son and suddenly at her doorstep she simply could not make her feet move to take those three steps up into the house. She had to pull herself up my her arms. Her feet wouldn't work. The nerves were damaged. She had foot drop. It was three steps. I have two long flights of stairs to get into this apartment when I get home.  

    But all of those worst effects are in the first week after chemo. The second week I can probably do some of those things at my own pace. And the third week I’m supposed to be almost normal. This is what the young Doctor P told me. 

    And the first week, even if I am kind've trapped up here, I could do yoga. I could meditate. I could get on the stationary bike and ride for a while. I could do that for 20 minutes a day. A nice easy stationary bike ride. Just to keep going. Just to keep being alive. I guess I will start to learn the rhythms of what I can do, and how to do it. Soon enough. 

    Dispatched: Oct 11


  • 10 Oct 2018 4:36 AM | Contact Me (Administrator)


    That nice technician was going to give it the all clear again this year. It was just that one excitable doctor at the clinic who saw the same information and thought something different and caught it.



    Wednesday morning. Before dawn. The day after the big news. I've told everybody in my family and my husband. So that hard part is done. My husband is being the most difficult because he's not accepting it. He's telling me, well maybe you can still do things, maybe you don't have to take a leave of absence, maybe you can still work, maybe you won't be sick, maybe your hair won't fall out. You don't know. I had to give him the speech that these are the things that I actually do know now. The doctor told me these things. I will only be able to work that one last week after one chemo and before the next chemo. One week out of three from here until January. Expect that. Plan for that. My hair will fall out.  

    It did help when I pointed out that it was just like planning for a shoot, or for having a baby, or planning for the conference. You don't know everything that's going to happen, but you plan for what you do know, and what you can find out, and it won't be perfect, but it still won't be as bad as if you didn't plan at all. Whatever your plan is, it's better than not having any plan.

    Funny, I've learned a lot from him about how you work toward the end goal even when you are in the middle of a production, you still keep your eye on that end ball and where you are in the big picture of the production. And he does this with his holiday plans too. He just can't seem to translate it to every day life. This part, what we're going through now. He can't seem to do that yet. I don't want it to happen the way the doctor described it either. I get it. 

    My family reacted differently. We’ve all been through it with my mom and my brother. Repeat cancer treatments with both of them. Though I think perhaps I did let them walk away from 'the phone call' with a better impression than the truth. I've let the prognosis seem better than it is. It is stage three cancer. That stages are 1 to 4 with 1 being the best likelihood of a good outcome. The internet says that if you start out at stage three then 74% are alive and cancer free after five years. Yes I could die from this, seriously. I'm letting them all react as if it’s the usual, early detected 90% alive after five years, stage 1 or 2 breast cancer. I don’t have it in me to be more insistent and point out it is stage 3. 

    It's not stage 4. Everyone I knew who had stage 4 is dead. They all died, mostly on schedule within the next three to five years. 

    I do not know what stage my mom was. But she is my best example and she had three lymph nodes, and she lived. So. I do have my mother's cancer. Hormone receptive. That's it all right. Even all the same presentation too. They caught mine a bit earlier. And hopefully the drugs are better now, and the surgery is better and I won't be going through the whole skin growing onto your bone, arm swelling up, double radiation on your chest bullshit that tormented the rest of her life even if she didn’t die of breast cancer. 

    It was weird to take my brother into the hospital, healthy, and have him be all damaged and carved up by that afternoon, facing weeks and months of recovery. It goes against intuition. How could that have been the right thing to do? 

    I have things to do today. I have to talk to my boss and give him the news, I may or may not have to take a full leave of absence. I have to talk to my insurance agent. I may or may not take advantage of my disability insurance. Things to be determined. 

    And some me-time. I am going to get that short haircut. And I am going to get a whole new makeup to go with it. Another haircut, more make up. 

    Start to make my plan. Be over the shock and start getting on with it. That's the goal for today. And do laundry. And it's raining out. And make the little mushroom turnovers. Fill the freezer with homemade food. 

    And call the cancer support organization, sign myself up for laugh therapy and tai chi.  

    Not all things have to be done today, but they are all things that I have to do before I start treatment. Expect the worst, plan for the worst, and then it's bonus, you can relax and enjoy it if it's not so bad. 

    And I am thinking now about my diet. They have food courses as part of my treatment through the support group, and the chemo nurses will talk to me about food too. I am curious. 


    This cancer was there on the MRI three years ago. 

    And yesterday, looking at that report again I realized how I fell through the cracks. It is a whole different cancer in a different place than where we were all looking three years ago. I got the MRI over worry that it was a tumour in my left breast pulling the nipple inward. And that breast did get the all clear in the report. I guess nobody kept on reading after that. This stage 3 cancer is in my right breast, it is in a duct that was suspicious, checked with an ultra sound and labelled ’nothing to worry about’ nine years ago. I went through mammogram after mammogram, all those yearly mammograms, and nobody really looked at the way “it” was growing because it had already gotten the - looks suspicious but got ultrasound verdict of not a problem - permanent note on my file the first time they found it. Nobody considered it again until I myself saw the changes happening quickly this summer. And that nice technician, I liked her, was going to give it the all clear again this year too. It was just that one excitable doctor at the clinic who saw the all the same information and thought something different.  

    Discovery consists of seeing what everybody has seen and thinking what nobody else has thought. 

    Albert Szent-Györgyi 

    My friend G knew instinctively that something was very wrong with her. She tried to treat herself with herbs and a variety of weirdo treatments for years and years, but nothing worked for long. When she finally went to the doctor her cervical cancer was stage 3. She rejected conventional  treatment, stayed the alternative health route and lived for another few years feeling good enough to finally write her three children’s books. And then, when it got worse she went far the other way and got into every modern, experimental medical intervention she could find. The dying part of her cancer took almost a year. She had such a strong generous personality, she was writing emails from her hospital bed, telling young filmmakers they were talented and to stick with it, the day before she died. She was so smart. And also she wasn’t. 

    Early detection is not as simple as it seems. Not when you are talking about a disease that frightens people so much. A disease that doesn’t have a straightforward one size fits all cure where people know what’s going to happen to them if they get treatment and know for sure that it’s going to work without the treatment being worse than the disease. A disease that is fraught with myth and shame because we still just don't really know exactly what causes it and how it develops. 

    Guilt and shame come into play. Even if cancer shame has moved over the years from punishment for your moral sins, to punishment for the sin of holding in your anger, to punishment for the sin of too much junk food there is still the implication that you could have prevented your cancer. So nobody really wants early detection. Nobody wants any detection at all, we'd rather keep any little personal flaws to ourselves, deal with the culturally-approved-this-generation root cause privately - yell out our anger in a closed room, make a public deal out of our health food and organic detoxes - rather than have to go through the big outward show of moral, psychological, or lifestyle failure that detection of our cancer implies.

    Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it. 

    Susan Sontag, Illness as Metaphor, 1978

    In my mother's day a lot of people who had their instinctive suspicions quietly went to therapy to resolve their anger issues before they went for early detection and conventional treatment. 

    These days people turn to food and drink remedies. Poor G.  All those years of early detection that she lost. All the shame she put on herself for eating too much peanut butter and not enough wheat grass, the way she did believe she caused her own cancer. And now we know that her cancer was caused by a virus. And now we have a vaccine for it. And now it is becoming nearly eradicated in countries like Australia that have a good vaccine program. 

    Above all, if he were to achieve anything, it was essential that he should banish from his mind once and for all the idea of possible guilt. There was no such guilt. 

    Franz Kafka, The Trial, 1925

    What a shame the role shame played in her story. And what a difference early detection and conventional treatment would have made in her case, even back in those days before they discovered that her particular cancer was caused by a virus. How I wish I could go back and just tell her. 


    Cervical cancer could be eradicated within 40 years


      

    Aug 30: I shaved my armpits for the mammogram recall

    Dispatched: Oct 10

  • 9 Oct 2018 4:43 AM | Contact Me (Administrator)


    Today is the doctor's appointment. I woke up in the night afraid. My last doctor’s appointment turned into a big mess and took all day. I guess I have reason to wake up afraid in the middle of the night. But I’m hopeful. Perhaps today will be the end of limbo land. 


    Tuesday morning, another grey dawn. Today I go to the Jewish General for a lame, probably nothing, doctor's appointment. I woke up in the night afraid. The last time I was going to a lame, probably nothing doctor's appointment it turned first into waiting with my husband for two hours, then discovering that I had a good heart for the chemo, but also a suspicious thing in my right hip, and suspicious lymph nodes in my chest. It was bad news looking like the cancer might have really spread. I was booked for a PET scan, plus chemo. They booked me for chemo to start on Oct 15th. And then it got worse, suddenly I was in it, getting the biopsy - that day, within the hour. And that was a traumatic experience that took five "shots" to get two tissue samples. And the freezing wasn't deep enough or long enough - so they hurt, they really hurt. And I bled a lot too. So traumatic that I hardly even noticed the lymph node biopsy - needle to the armpit. That one appointment turned into this big mess and ended up taking all day. That was my last, lame, nothing much going to happen appointment day. So yes, I guess I do have reason to wake up in the night and be afraid of this appointment too. 

    Who knows what will happen to me today. 

    It might be lame and nothing. It might be a big fight with the newbie doctor. It might be the big prognosis - they have results, they are ready to tell me what my future will be. Will it be five years of hormone therapy? Six months of intense chemo? Nothing at all? I actually have no idea. I cannot guess. It could be any of them, with some variations and combinations. Bit of chemo, bit of radiation, bit of surgery? It's spread, it hasn't spread. Who knows? And it may be, we still don't know anything, let's keep the chemo appointment until we see. This morning. My next appointment is this morning. 

    I would like results and a clear path ahead. One way or the other. 

    I find that I'm done with this waiting, be nice to myself I'm under stress, waiting period. It was fun to get my hair done, get my eyebrows done, paint my toe nails and do a manicure for myself. But that novelty is over. I don't find it sustainable. 

    I'm not happy with this self-indulgent life. I don't like myself this way. There is only so much I can indulge myself before it's not rewarding. I don't like the way I'm eating, I don't like the way I'm not exercising, I don't like the way I'm not working hard at some big project. I miss my hardworking, hard exercising, meditating, disciplined eating, too busy and focused to get my hair cut, get my eyebrows done, paint my toe nails life. 

    I like to bake a bit on the weekends, I like to have a knitting project, a book to read, a video game to play with friends, putter around the housecleaning, get my hair done, get my eyebrows done. I like all of these things as side things. Even ice cream, chocolate, chips. These are all good little side things. 

    But life for me sucks when that's all there is. I start to get restless, bored, frustrated, unhappy with myself. I don't like my life right now. 

    I would rather put my nose to the grindstone. I love that intense focused work where time just disappears around you. You look up from the computer five hours later and realize that you are hungry and you really have to pee. But boy you feel good. Mentally, spiritually, deep down good all over. That kind of work, exercise, mediation. Intense and focused. Those are the main things that I actually like. But I'm holding back on big projects now. Waiting to see. I don't want to start and get part way in and have to quit on account of cancer treatment. It will be harder for me to untangle things if I start up now. So I wait. I indulge myself. 

    "What are you waiting here for?” asked K. courteously. But this unexpected question confused the man, which was the more deeply embarrassing as he was obviously a man of the world who would have known how to comport himself anywhere else and would not lightly have renounced his natural superiority. Yet in this place he did not know even how to reply to a simple question and gazed at the others as if it were their duty to help him, as if no one could expect him to answer should help not be forthcoming. 

    Franz Kafka, The Trial, 1925

    And also I'm sick. I still have this cold, and it could turn into bronchitis, which I can't afford to have right now, so I am being more careful with my health, I'm not pushing the exercise too much. Losing that intensity from my life too. Give it a week. Let me get over this cold. 

    And so it is this week. This could be the last week of limbo. Oct 15. If there will be chemo, then that's when it's scheduled to start. By then surely we will know the lay of the land. 

    It could also be something in between. A pill that slows me down but doesn't stop me, specific radiation that slows me down but doesn't stop me. Who knows. The airlines are having a big seat sale right now. I could book a ticket to visit my other son, my sister and brother, they all live in the same city. The fares are really good right now. You have to book ahead. But I don't know if I could go yet - either on account of chemo and doctor appointments themselves. Or on account of chemo and being advised not to travel and be around kids and sick people. That too. Who knows? I hate this not knowing. 

    If I knew, then I could go ahead and book my ticket. Or shrug my shoulders and let the sale go by knowing that I can’t go anyway no matter how good the price. But. As it stands right now. Maybe. I could go. Arrgh. 

    I don’t have enough to do. 

    I will be glad when this stage is done. 

    This is not my kind of lifestyle. 

    I should find something for - anyway. Something to do anyway. Whatever happens. 

    “This gentleman merely asked what you were waiting for. Come, give him an answer.” The familiar voice of the usher had it’s effect. “I’m waiting - “the man started to say, but could get out no more. He had obviously begun by intending to make an exact reply to the question, but did not know how to go on. Some of the other clients had drifted up and now clustered around. “Off with you, keep the passage clear.” They drew back a little, but not to their former places. 

    Franz Kafka, The Trial, 1925

    The problem is that I just don't know enough. What could I do anyway? Really? I don't know how bad/intense/whatever is coming up might be. I could play this dumb game on my phone. I could probably do that anyway. Read a bit? Knit a bit? I've spent too much time like that already. If I had known it would take this long I would've taken on more in between. I would've given myself bigger projects and goals to finish in the meantime. But I thought it would've been over and decided before this. I didn't think I had this much time to do them, get them done. And I still might have time. Who knows. Lot's of people work right through their treatments. My brother went to school full time through chemo and after surgery. So it doesn't mean I have to stop everything. Necessarily. Even if it's bad. 

    I woke up afraid. But now that I'm awake I feel more hopeful. Maybe something, anything, will happen today.

    Sept 19: What a wild day

    Dispatched: Oct 9


  • 8 Oct 2018 6:21 AM | Contact Me (Administrator)


    Still waiting to hear. Part of me wants to just get on with it. Part of me wants to stay in this moment, to delay the future indefinitely and just be in this limbo present, feeling healthy - permanently. Part of me wants to start up an entirely different life. Step out of this reality altogether. 



    Monday morning, Thanksgiving, so it's a day off. My husband and I are both up early today. He had to take the director to the airport at 5:00am, so when I woke up at 6:00  am lights were on, but the house was empty. My husband likes being the producer now, he just drives to the airport and then gets to come right back home, he's home by 6:00. The director is at the start of a long hard shoot. We used to go on those shoots too, but now mostly we only go as far as the airport for delivery and pickup. 

    I went straight into my phone game. And last night I looked at the one of the art prints on our wall. The image is created by all these tiny dots of paint. And I thought about how obsessed and compulsive that artist must be to create in that way, holding both the tiny dots and the bigger picture in their mind at the same time. And I thought about that artist compared to everybody else. And I thought about how that artwork justifies everything. How it sets her above and beyond the pack of the rest of us. And about how it's compulsive too. 


    And I sat and played my phone game, and thought about the all the times of spent playing World of Warcraft and doing those quests. And imagined if I had put that same compulsion into something real instead of the games. Where would I be now? What would it be now? Something missed, and easily redirected. The compulsion could've gone the other way easily enough. What if my every spare moment was spent making art-anything instead? What would the result be like? I think I would be happier. It would still be creating a world. But it would be a unique world, and one that has real world consequences. 

    If I get through this, if I get a reprieve, shall I go that way? What has stopped me up until now?  

    Just a minute, my phone is calling, I have to go plant my crops, feed my pigs, sell those apples. 

    Fear of failure, or fear of success? Which is greater? In my experience, after the fear of  death, which mostly we don't think about, those are our two big 'working' working fears. Fear of failure. Fear of success. And I have seen fear of success be just as destructive, maybe even more destructive than fear of failure. Only the daily middle road just staying busy, running in circles can protect you from both fears. 

    I realize that if I wait until I am no longer afraid to act, write, speak, be, I’ll be sending messages on a Ouija board, cryptic complaints from the other side. 

    Audre Lorde, The Cancer Journals,1980

    Today is a bit of a last day for me. I have a doctor appointment tomorrow. I'll go, who knows maybe they do have results, maybe things will suddenly start to happen. Or it will be a waste of time. I'll sit in the waiting room for hours, the doctor will finally show up with nothing to say, and maybe try to order unnecessary tests. Or, it might suddenly go the other way too. They might have everything, both doctors will be there and they will lay out the whole story. What kind've cancer, what stage of cancer, why that stage, the treatment and the prognosis. At some point I will get that. Some kind've diagnosis  and result. It won't go on like this forever. 

    But it might go on like this for another week or two. Or not. 

    Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course. 

    Franz Kafka, The Trial, 1925

    Yesterday I made a roast turkey breast, with mashed potatoes and carrots, green beans. It was a big, good meal and it smelled delicious while it was cooking. I missed Moose the dog and thought about how much he used to enjoy the days I made a roast, or had meat in the slow cooker all day, how he loved to sit and smell it cooking. It was a bit flat with just me and my husband compared to that dog level of anticipation and appreciation for the smell of meat cooking in the oven. But it was still nice and homey and felt plentiful. And I made apple crisp. So that smelled good too. And there will be homemade meals to follow. I put aside a chicken shepard’s pie with a layer of meat and gravy, frozen peas, and the mashed potatoes. It's all ready to go into the oven to be baked into a comforting meal with a salad and maybe a cooked vegetable to go with it. I already made some soup broth and I'll cook that into a mushroom, wild rice soup. That'll be good to have on hand too. And there is enough meat and gravy and vegetables left for me to make some pot pies too. Keeping busy.  

    During the next week K. Waited day after day for a new summons. 

    Franz Kafka, The Trial, 1925

    I am still in limbo. Still waiting to find out the shape of things to come. It's been a long time. In some ways it's been since before the conference in June. And the intense out-in-the-world part has been since the end of August. It's a long time to be in this kind of limbo. Part of me just wants to get on with it. Just do it. And yet, the other part of me is happy to delay it, happy to still feel healthy and enjoying life and this beautiful fall weather. Part of me wants more time even, more time to spend in my life in this awareness, thinking about what I'm doing with my life, what's precious to me, and simply, just being. Being without pain or sickness, feeling good and just being. 

    Dispatched: Oct 8

  • 7 Oct 2018 5:20 AM | Contact Me (Administrator)


    It’s always a balance. Right now I feel like I would spend the money. Even if it is an investment in time running out. It might be a mistake. But that's just life. Mistakes happen.


    Sunday morning. The rain has stopped but it's still a bit grey outside. This is the time of year when the sun rises as I get up and get going. These few weeks are great for sunrise beauty. And I got up at 6:30, surprised at the darkness, in Baltimore it was light already, getting light already by 6:30. Here is it was still dark. 

    I read over my old journals. On this day three years ago I was kicking myself for misspelling the head of the hiring committee’s name on my job application. I had to fess up, and resubmit with his name corrected. I was kicking myself over that. But now looking back I think that's one of the things that endeared me to him. It gave us a secret that we shared and didn't tell the rest of the committee. At the time I thought it was a big mistake and a flaw, and I really got after myself over that little mistake. But I think that actually it was a good thing that helped me get that job, spelling his name wrong, catching it, and humbly apologizing and correcting it. He liked that. It helped me stand out from the crowd. 

    Yesterday was a good back to normal day. I vacuumed the rugs. Cleaned the bathroom. Did a quick tidy and dust everywhere. Washed the kitchen floor. It felt good to get it all done, and be back into the routines of my life. Housecleaning and touching everything is my little way of re-establishing myself at home after I’ve been away for a while. 

    It was raining and I'm still coughing, so I took the bus down to the Y. I had a lovely full sweat sauna that felt fantastic. A half swim because the pool was starting to get crowded, and I was still sick, I had enough of a swim to stretch out and feel good, but not push myself hard swim. This Y trip was mostly about the sauna and the whirlpool. And I had the whirlpool and indeed the whole shower room to myself for quite a while, and I did give the old body a good thorough massage while I was in there. And it felt good. I felt good after that. I always feel good after that swim/spa day. 

    Yesterday morning I looked through the cancer support group brochure. They have laugh therapy. They have Tai Chi lessons, yoga classes. It's all these cool things that I would want to do anyways. Hell yeah I'll sign up first thing if I have to go into chemo. And sat there with the brochure imagining this whole nice semi-retired life of laughter classes, puttering with my knitting website, working a new writing project -without deadlines, fiddling along. Having this easy, less stress life, enjoying the excuse of being sick to indulge myself in that way. The brochure makes cancer treatment look like fun. 

    The historical conditions that once allowed a doctor to declare that the truly happy never get cancer have shifted such that we are now asked to think about breast cancer as a route to happiness. 

    Pink Ribbons, Inc. Samantha King, 2006

    But of course that's not the way it goes. If I'm well enough to be doing the knitting website, then I should be doing the documentary scripts that I’m contracted to write, and the executive director work for the non-profit instead of laughter and Tai Chi.  And of course I've left out the whole, chemo reason that I would be eligible for these cancer support group programs. And that implies, the whole you could die from this, cancer part of the story too. 

    I was imagining it as this great little semi-holiday. Two or three months of doing ‘me’ things, indulging myself. And as I imagined it further, I realized that I don’t want to give up the things I'm already doing, I want to keep them going too. So for me to have that fantasy life it would actually be two or three months of me adding cancer treatment to my schedule, but not really giving up most of my schedule. 

    In the meantime soft deadlines are going past me. I'm waiting to see if I have cancer, and how long and debilitating they expect the treatment to be. These deadlines can wait a week or two. I know that. But I'm feeling it. I'm feeling the deadlines pass me by. And it bugs me. But this is the best way to handle it.  The treatment might not be that bad. I might be able to still keep working. We don't know. That's the problem, we just don't know. And sometimes what seems like a bad mistake now can turn out to be the exact right thing with a little hindsight. 

    Yet every attempt I made to examine or question the possibility of a real integration of this experience into the totality of my life and my loving and my work, was ignored by this woman, or uneasily glossed over by her as not looking on ‘the bright side of things’. 

    Audre Lorde, The Cancer Journals,1980

    I looked up the hormone receptor cancers. That's a long term commitment, five or ten years. Hot flashes, sore joints, like menopause - but long term. Take a pill once a day. I could/would keep working through something like that. I worked all through real menopause. It could be six months or a year before they did surgery for the original tumour. Let the hormone therapy reduce it to a more manageable size, where there would be less damage from the surgery first. 

    So if that's the story, then I would just go ahead as I am. But without this good health feeling. Five to tens years of feeling kinda shitty all the time. Not such a great prospect. These were going to be my good years, my peak performance, real prime of life years before the older, old age parts kick in. 

    Or it could be the intense chemo. Really sick for three or four months. Surgery. Recovery. That actually looks better now. Maybe I'm not hoping for hormone cancer after all. 

    The problem is I just don't know. The problem is that it's been a whole month of not knowing. It might not even be cancer. It might be just a growth that's growing. Lumps and bumps like old people get. Like our old dog Moose used to get. It might be that too. I just don't know. This is a long time to have your life so much up in the air, your future so un-plan-able. Un able to plan.  

    It's a real lesson in living day by day. And it's interesting to discover that really, I wouldn't live my life very differently if I knew these were my last days. The way I live, it's okay. I like my life. 

    I’ve started to play one of those phone games where you feed farm animals. My son got me started on it, my sister wants to join in. I'm getting inclined to quit it altogether. I'm getting frustrated with the way they keep pushing me to spend actual money to get over this logistical humps that they set up. It's annoying. And I don't like the way it fills my brain when I'm going to sleep. It’s one of those compulsive games. But it could be a way to hang out with my family virtually. So. I'll keep it up for a while. It could be good for going through cancer treatments. A compulsive distraction that I can indulge on my phone while I’m sitting in waiting rooms. I’m finding that books and knitting are too big and cumbersome. Or not compulsive enough to be a good distraction. 

    But it's turning into a beautiful fall day after all. The sun has come out, the sky has cleared. 

    I'm glad that I feel good. Nothing hurts. My boob has recovered completely from the whole biopsy trauma. Even the bruises on my arms are gone. It's like it never happened. It's like it's not happening. 

    Enjoy today. Take this day, this moment in time and just enjoy it. 

    There is only one fall cleaning thing on my list. Do the windows. But I'm still kind've sick, the cough is slowing down, another few days and I'll be passed it. Maybe later in the week, maybe next week, I'll get that one last cleaning thing done and then I can step back from that a bit. Maybe that’s all the chance I’ll have for fall cleaning anyway. 

    If I have a big cancer thing to go through, then I am going to treat myself to the wine bottle hydroponic garden, I’m going to put one in my office window. I have been meaning to make one myself out of water bottles, but I’ve never had enough time to do it. The wine bottle hydroponic guys will come and install it for you, but not for free. Time versus money. It’s always a balance. Right now I feel like I would spend the money. Even if it is an investment in time running out. It might be a mistake. But it won’t be a huge mistake, just a small investment to turn this little corner into a greenhouse for the winter. The way I dreamed it. I’ll do it. Invest in that so I can enjoy it no matter how shitty I feel over the treatment. A treat for myself. A gift of a bit of a future that I wanted, but that might not be for me. A treat that is not about my body. But is about my mind. Not food, not clothes, a mental health treat. A soul treat. A little gift of something from the future. Make it happen. 


    Dispatched: Oct 7

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