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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


  • 26 Sep 2018 5:47 AM | Contact Me (Administrator)


    I learned a lot by keeping my mouth shut and just listening, hunched in a corner, basically under the kitchen table so I wouldn’t be noticed. I was considered too young for these things. Oh, but how I loved to listen!


    I am pretty sick. Drink plenty of fluids. Rest. Watch soap operas on TV.  My old sick day friends. Thanks to plastic surgery, soft focus, and my bleary eyes Nicky hasn't changed a bit since the last time I was this sick. And Victor is the same old sleese bag. And neither one of them has learned to act yet. But they are like old friends who are always there for me whenever I get sick and have to stay in bed for a day or two. 

    Aunt Polly. When she was alive. When I was a little girl, keeping as quiet as a mouse in the kitchen. When the old Russian healers were gathered and talking shop. Waiting for the sauna to heat, waiting for their turn in the sauna. Or cooking for a hundred people. Cooking and talking. She wasn't actually my aunt. She was everyone's Aunt. She took care of a lot of people. All that was at the end of a time before modern medicine really came to that culturally isolated community. There was power and running water, but doctors were still suspect outsiders and hospitals were the places where you went to die. They lived much longer than average, and were healthier right to the end. As I grew up people used to ask me about their secret to healthy and longevity. 

    He still had a secret medicine to fall back on - the issyk-kul root; he was not counting on returning to the backwoods for nothing, but to heal himself with that folk cure. If he possessed the root, he would come to the cancer hospital only for checkups. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    Men and women. Grandpa talking about the young Angliki ladies who had a grant to study traditional medicines and plants; and they wanted to talk to him. They wanted to write it down in a book so anybody could learn and use the knowledge. He said no. Medicinal plants are powerful, and they are dangerous. You can't just learn the doses in one day because they are never the same. The thing with plants is that it depends on the time of year that you harvest, and the weather, not just that day, but all the days leading up to the harvest. Did it rain a lot? Was it hot? Colder than usual? These things will affect how much medicine is in the plant when you harvest. How you store it. How you harvest. And plants are dangerous. A wrong dose can kill a person. A book like that would be like teaching people how to do brain surgery in one day. Anybody who believed you could learn it like that would go out and kill somebody if they tried it. He told them if they were willing to spend at least four years learning about the plants, like a university program, then he would start to teach them, but really you need to begin young and spend your whole life at it, living in the same place and getting to know the plants around you over their life cycles, through all their seasons. 

    Very dangerous. This is the issyk-kul root. It must not be breathed either in solution or dry. that's why it's stoppered so tightly. If you get it on your hands and don't wash afterwards and chance to lick your hand, you could die of it. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    Aunt Polly, amazed when she found out that Mabel, who was the first one to go modern and have her baby in the hospital, was expected to stay there in bed for seven days after the baby was born. It's true. She did not get out of bed once. Not even to go to the bathroom? They had a bed pan for her. She said she felt dizzy when she tried to stand up at the end of it. Aunt Polly snorted. Of course. Try it yourself. If you lie in bed for seven days you'll feel dizzy when you try to stand up too. Even if you are perfectly healthy when you take to the bed. What kind of quack would do that to young mothers. Getting up. Standing up. Walking around. That is the most important single thing you can do for a person who has had a body trauma, help get them moving. 

    I learned a lot by keeping my mouth shut and just listening, hunched in a corner, basically under the kitchen table. I knew they would either send me out to play, or change the subject if they noticed me in the room. I was considered too young for these things. Oh, but how I loved to listen!

    Modern medicine is not always right.  Even about basic things. Maybe especially about basic things.

    He could not completely surrender himself to the cure until he understood it and believed in it. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    I remember the nurse who threw a fit when my own newborn son, born in a hospital, got jaundice on his third day. A generation after Mabel we still had to stay in the hospital for a week after the baby was born, but we didn't have to spend the whole time in bed anymore. Breast feeding was frowned upon. That is what caused my son's jaundice. The nurses blamed me. They took him away from me with angry, hateful tut, tuts. They put him under an ultra-violet light. They fed him with bottles in the nursery when I was asleep.  

    And now it's gone completely the other way - again. Now the practices are closer to the old healing traditions. Young mothers go home right away. Get up and walk. They are all encouraged to breastfeed their babies. We are back to they way the old midwives and healers advised young mothers two or three generations ago. 

    But twenty years ago you were radiating some other Kostoglotov who also feared and resisted the treatment. Yet you assured him that everything would be all right, because you did not know about radiation sickness then. I’m in that position now. I don’t know yet what to be afraid of, but let me go! I want to get well by my own strength. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    Great grandma used to watch soap operas all day. Grandpa said she was learning English. But the only English word I ever heard her say was 'Spokane'. She was over 100 years old. She lived in a little house in the backyard with no electricity. Slept in a feather bed. Grandpa locked the door to his house when he went to town because if he was gone his grandmother would sneak in and just flush the toilet over and over again. All that water amazed her. She could never get over the toilet that always worked no matter how many times you flushed. It always worked exactly the same way - every time. Consistency. 

    This soap opera has been going on for so long now I wouldn't be surprised if it was the same one that Great grandma watched back when I was a girl. It's been on ever since I can remember getting sick and needing bed rest that always turned into couch rest in front of the TV because I was too restless to stay in bed. Somethings do stay the same over time. 

    Did Aleksander Solzhenitsyn Cure His Own Testicular Cancer?


    https://undark.org/article/did-solzhenitsyn-cure-his-own-testicular-cancer/


    Dispatched: Sept 26

  • 25 Sep 2018 6:02 AM | Contact Me (Administrator)


    Finding the cure? Maybe death prevention is enough? It's enough for me.


    Tuesday. Feeling sick this morning. Plain old fashioned flu/cold sick. My throat is sore. I can hardly swallow. I was expecting it. I've seen the symptoms and I know what's ahead of me. Everybody else has had it already so they know what it's going to be like for me too. Miserable. But also predictable, and pretty much the same for each of us. 

    First you wake up with a sore throat, then your head feels like it's stuffed with cotton, then your bones ache as you get into the fever part, then your nose starts to run, then you start to sneeze, then the fever breaks, and you are weak, but you start to get better. Takes a week to ten days. 

    You can do things to try to make yourself more comfortable at each stage, and some people go through it faster with less severe symptoms, but you can't change the course of this illness once it starts. It always just plays itself out. And you get better by yourself at the end. 

    This is the kind of sickness I know. Familiar. There is even a kind of family bonding as we each go through the same sick person symptoms in our turn. A shared misery and sympathy. Part of the experience of being human together. 

    This kind of everyday illness used to be a mystery. And people used to die from it back in the days when we weren't as healthy to start with, before people knew about clean water and antibiotics. Parasites were common. We still are still plagued by germs and viruses. But now we know more, we survive more, and so they are not so frightening and weighted with meaning as they once were. 

    Far from revealing anything spiritual, it reveals that the body is, all too woefully, just the body. 

    Susan Sontag, Illness as Metaphor, 1978

    One day cancer will be like this too. If my granddaughter gets stuck in this same cursed boat when she is in her sixties perhaps by then there will be a simple cure. A pill to take for a few days that stops it in it's tracks, or a prevention like a vaccine that keeps it from even starting. The research is going so fast that if this hits me ten years from now there might be a better treatment. But I don't have generations to wait. I don't even have ten years to wait.  

    I am stuck in the now. That is where I live. The treatments now are barbaric. My great-granddaughter will look at all the images of bald women going through chemotherapy and be just as amazed that anybody would submit to such a primitive, unreliable, imprecise, and destructive treatment as I am when I see images of the Halsted radical masectomy, or imagine what it would have been like to have your breast cut off even earlier - before anesthetic was developed. 

    Lorenz Heister, an eighteenth century German physician once described a mastectomy in his clinic as if if were a sacrificial ritual. ‘Many females can stand the operation with the greatest courage and without hardly moaning at all. Others however make such a clammer that they may dishearten even the most undaunted surgeon and hinder the operation. To perform the operation, the surgeon should be steadfast and not allow himself to become discomforted by the cries of the patient.” 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    The thing with these kinds of barbaric treatments is that you have to suck it up and not react to the torture otherwise you just make it worse. These treatments are torture. If any of this was done outside of the medical world the perpetrators would be sent to jail - for life. If death wasn't on the table, then nobody would allow it. Not the patients. Not society. But death is on the table. And we don't know any better. This is all we have. And so we have to allow it or die. And if we decide to allow it - decide to take that unsure chance on, not necessarily a cure, but if we are lucky, a significant delay in death, then we have to suck it up and try not to make it worse with a lot of clammer. 

    It is over: she is dressed, steps gently and decently down from the table, looks for James: then, turning to the surgeon and the students, she curtsies - and in a low, clear voice, begs their pardon if she has behaved ill, The students - all of us - wept like children. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    And it’s not just the surgery. There is chemotherapy now. And radiation too. And while the ingredients and doses may be more widely tested and consistent, while the radiation may be more closely focused. It’s still all basically fighting in the dark with whatever tools we have that might work. We have had centuries of fighting cancer with too little real information. 

    “Cures” for breast cancer over the ages have included exorcism, the laying on of hands, concoctions to drink or apply, and even fire. 

    Rose Kushner, Breast Cancer, 1975

    We’d all rather just take a pill or drink a tonic than go through surgery. Pills and ‘tonics’ don’t cure colds and viruses either, but taking them makes us feel better anyway. It lets us feel like we are doing something to help ourselves and our loved ones. And if it relieves the symptoms for a while, what is the harm? Except to your wallet. 

    Unsurprisingly, rather than take their chances with such ‘undaunted’  surgeons, most patients chose to hang their fates with Galen and try systemic medicines to purge the black bile. The apothecary soon filled up with an enormous list of remedies for cancer: tincture of lead, extracts of arsenic, boar’s tooth, fox lungs, rasped ivory, hulled castor, ground white coral, piece, senna, and a smattering of purgatives and laxatives. There was alcohol and the tincture of opium for intractable pain. In the seventeenth century, a paste of crabs eyes, at five shillings a pound, was popular - using fire to treat fire. The ointments and salves grew increasingly bizarre by the century: goat’s dung, frogs, crows feet, dog fennel, tortoise liver, the laying of hands, blessed waters, or the compression of the tumour with lead plates. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    This is just a cold. I can take the day off work today, My son is feeling better now, he can drive the kids to school. I can take some 'medicine' for the symptoms, go back to bed and crawl under the covers. Feel safe in the knowledge that I probably won't die from this cold. Even if I might feel like it. 

    Dispatched: Sept 25

  • 24 Sep 2018 6:21 AM | Contact Me (Administrator)


    That’s the cure. Stand up. Work all those little balance muscles. Let them tell your body to wake up, be alive. Take that first step. Start walking. Keep walking.  Stay with all your family. Don't get left behind. Don't hold them back. Walking is survival. Deep body knowledge.


    Monday morning, 8:30 am. I learned the morning routine, drive the granddaughter to school at 6:50 come back and pick up the grandson, drive him to school at 7:15 and that puts you back at the house by 7:45. All driving is before rush hour, no driving on the beltway or even crossing the beltway, so this part is not too bad. My son is sleeping in, I did the trip with my daughter-in-law because my son is sick with the cold/fever that's going around in this family. I will probably get it. Now that I’ve seen what it looks like I’m not looking forward to it. 

    I'm wearing my grey cardigan and red jeans sitting in the screened in porch. I've done the first step of this day's schedule and the next will be a shower for me, and I'll do laundry today. That's the me part of the schedule. A few office emails to answer. Then what I really want to do is just hang out with my son. If he feels better. That'll be nice. That's my number one priority for this day, so I will try to do all the other things early, before he gets up. 

    Yesterday was a nice relaxing day. My granddaughter and I had some time on the big couch in the basement, I knit, she did her homework, we chatted. My son and I had some nice time together on the big couch too, he played his video game and I knit, we chatted. My grandson and his best friend played video games together in the side room. We all smiled listening to the sound of the two boys together being just happy and chatty, and getting along, and having fun. It was good. My daughter-in-law was listening to the Raven's game upstairs. We heard her cheering for the team every once in a while. That was a good Sunday afternoon. Then we got decent and went out to Petit Louis, a bistro style restaurant, and from there to the theatre where we saw the play that my son worked on, and got a back stage tour to see the new set that he's building now. It was fun to get the backstage tour with my son. But he was pretty sick and miserable, and feverish the whole time. Poor guy. 

    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

    But this is just normal sick. It’s something that’s going around, that’s all. Some cold or flu bug. It’s going to last for a week or two. The symptoms will progress in a certain order, and they will be basically the same for everyone. Some will suffer more from the runny nose part, others from the fever chills. But the pattern is set. And if you walk into a house where everyone either has it, has had it, or is just getting the first symptoms. You know that your turn is next - after a suitable incubation period. That is normal sick. 

    My son has also been deadly sick before. I remember when he was in the hospital in critical care after surgery, in and out of critical care. We didn’t know if he would make it or not for weeks. There was no way to know. There was no pattern of symptoms to follow. We just had to go day by day. Hope day by day. Everyone rallied round. We tried to keep him going. We tried to cheer him up. His family. His friends. I did the after surgery walks with him when he could get out of bed. I remembered those days when he was just learning to walk for the very first time, when he was only a year old. I expected it would be my turn next. I expected that the the next stage would be him helping me to walk. Helping me up, guiding me along, encouraging me, staying close in case I started to fall. I did not think I would have another turn at helping him to walk again. Bedridden. Get up and walk. That’s the cure. Stand up. Work all those little balance muscles. Let them tell your body to wake up, be alive. Take that first step. Start walking. Keep walking. The tribe is on the move. You’ll be left to die if you can’t walk. Or they will die if they have to wait for you. The herd will have passed. The fish will have done their run. The bears and birds will get all the berries. Following the food. If you can’t keep up you won’t survive, they won’t survive. Deep body knowledge. Walking is survival. Get up. Just walk. Keep walking. 

    Walking. It seems so simple. We mostly take it for granted. But it’s such a fundamental thing we humans do. Standing up and starting to walk marks the transition from baby to child. Losing your ability to walk, your basic mobility, is a devastation to your adult life, and the beginning of the true old age stage for most of us. 

    There are a lot of ups and downs in the middle, but walking and then not walking are like books ends in a typical life. My son and I are both just having ups and downs in the middle right now. That is the stage we’re in right now.  

    I’m still walking, but it hurts. My poor boob is one big yellow bruise now, they did a real number on it. I also have a red skin rash from the tape. So it looks a bit dreadful. And it still feels sore, especially in the spot, deep inside, where they put that metal marker. It's like getting used to having a new filling, that feeling of metal rubbing raw tissue in your body. But other than that I feel pretty good. 

    Now, cheerfulness, up to and including delusion and false hope, has a recognized place in medicine. 

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

    So that's it. Gonna go have my shower now. Start my laundry. Send off the office emails. And that’s it for my, me-driven schedule for the day. After that it's just follow my son around picking up grandkids from their schools and taking them to their after school events. If he’s feeling up to it. Have dinner together. And I’m part of the routine now. I could do it myself now. 


    Try to get up and move around as much as possible to help your recovery and reduce the chance of blood clots or infections. The nurses or a physiotherapist will give you advice about this.

    Recovery after surgery - Cancer Council Victoria


    Dispatched: Sept 24


  • 23 Sep 2018 6:17 AM | Contact Me (Administrator)


    Love. Learning. Cancer genes. I feel my grandmother’s love being passed down through the generations even though she died from that mysterious might-have-been-breast-cancer long before I was born.



    Sunday morning. I'm outside in the screened in porch at my son's house. This place feels like being out in the country, deep in the forest, the crickets and cicadas, the birds, the big trees all around. You would never know we are inside a big city. This is a city of big trees and deep ravines that bring the country and wild life like deer and fox in far closer than you would expect. 

    Yesterday was a typical Saturday in this household.  Saturday morning is a soccer game, get Starbucks coffee on the way, sit in camp chairs when we get there, on the same field as last spring, on the same field as the fall before, watching my grandson  play soccer. Hot tub and nap in the afternoon. I slept on the new couch downstairs while my son and grandson played a video game together. Fun to fall asleep listening to them helping each other play. Took the dog for a walk with my daughter-in-law and granddaughter. Then it was off to Wegmans to get fabulous food for a fabulous meal. Got home in plenty of time to eat an amazing cheese platter and drink wine while we cooked the fabulous meal. Cioppino: halibut, shrimp. lobster. mussels. Fresh tomatoes from the garden. Pre-chopped mierpoir, mini-potatoes, white wine, lime and lemon juice, cilantro. What I've noticed is that lately this does always turn into my son doing the actual cooking even though it was my daughter-in-law and I who wanted to make that meal. We all watched Dr. Who together. Off to bed at midnight. 


    I'm feeling okay. Sipping my wine slowly, keeping to my two cups of coffee by sipping them slowly too. Trying to take care of my kidneys, and liver, and bladder that have had all this extra work to do in the past couple of weeks. Drink more water, keep up the regular exercise but don't push it into getting sore muscles territory. Taking care of my body. Keeping it in shape for what's to come, even here, even here on holidays. 

    Yesterday I took off the band aids while I was in the shower. And I looked. I just have yellow coloured bruises and the band-aides are gone. The poor old boob and armpit are still a bit sore from the mauling that they got, but it's all into recovery now. Nothing alarming; no fear of bleeding and infection anymore. I am past that stage. Move on. 

    At first I was embarrassed about the big bruises on both my arms. They go from below my shoulder nearly to my wrists and onto one hand. I started out wearing long sleeves so people wouldn't notice them. I didn't want the grandkids to see them and freak out. But was hot, and you can't wear long sleeves in the hot tub, so I got over it. So that was that. Not an issue anymore. 

    Yesterday felt good. It all felt like normal life. My weekend off. I missed my husband last night. Sleeping alone in the guest bedroom I did miss his presence next to me. 

    Today we can all sleep in, it's a relaxed morning. Then it's out for dinner and off to the theatre for a play. This will be the first time I've been to a play at the theatre where my son has been working for all these years. And so today is all accounted for. A day of normal. A day off work, and also a mental health day off being sick. And I'm not sick. Bit of sore boob. Everybody in this household actually seems sicker than me. They are all at various stages of this bad cold. I’ll probably get it too. Families share those bad bugs as well as the good times.

    We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer. 

    My Medical Choice, By ANGELINA JOLIE, 2013

    In the meantime, here is me, sitting in the porch, feeling a bit tropical in my diva housecoat. Me with my red toe nails, and my nifty new shorter spunky haircut, and my shaped and coloured eyebrows. I took a new Facebook profile pic, a selfie of me with makeup, eyebrows, hairstyle and my slimmer face, and contacts not glasses. This is my peak picture. Me looking good before it all begins, or me simply looking good because I decided to indulge myself in hair, eyebrows and makeup on account of all the physical assaults that have been happening to my poor old body. Me having a moment.  


    I did put up the picture of Moose's ashes going into Lake Superior. I remember seeing Moose's ashes, the ghost of Moose's body being accepted and dissolved into the greater sand and ash and water of Lake Superior. The waves came into shore, lifted up the ashes and took them back out into the lake with them. The waves took the ashes and they spread out into the lake. It is my metaphor for death, all your molecules dissolving out into the universe again. It was very satisfying for me. 

    My granddaughter liked that picture. She knows what the picture is and what it means. To everybody else except for my granddaughter and my husband, and even to my husband until I reminded him, it is simply an abstract image. That's the thing. You can't expect people from your own generation to be your memory keepers. They forget as much and as fast as you do. It has to be someone from a younger generation. Your children’s generation, your grandchildren’s generation, they are the memory keepers, are ones who will pass on the story of the things that have happened and what they mean. 

    We thought each infant was born pure and new and holy: a gold baby, a luminous lamb. We did not know that certain forms of breast cancer were programmed and almost ineluctable, and we would not have believed you if you had told us that in our lifetime young women would be subjecting themselves to preventative mastectomies.” 

    ― Margaret Drabble, The Pure Gold Baby, 2013

    I am doing it for my grandchildren now, I am helping make the stories of their lives with little books, view-master slide shows, calendars, stories. And in turn they will do the same with whatever tools get used for family storytelling in the future for their children and grandchildren, and so the love I have for them, and our understanding about the meanings of our lives will get passed down into the future generations even if nobody will know my name beyond a generation or two. I don't know the names of my all my great grandparents, I still inherited their love. I inherited in my turn the love and care that they passed down to their kids and grandkids. I inherited something of their way of living. I am lucky to have inherited that. 

    Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy

    My Medical Choice, By ANGELINA JOLIE, 2013

    My mother learned how to knit, crochet and embroider from her mother and taught all of us kids, even my brother how to do it. And in turn these skills have helped me connect with people who have different languages and cultures wherever I’ve travelled in the world because fiber arts are part of the love and care that have been passed down through the generations by humanity for as long as we have been human. When I touch the stitches of the sheets she embellished I feel my grandmother’s love being passed down to me even though she died from that mysterious might-have-been-breast-cancer long before I was born. And it was some older grandma from an earlier generation that we don’t remember now who taught her. 

    Love never dies. 

    I never knew you, but thank you grandma for loving and teaching my mom, and thank you to the grandmother who loved and taught you too.

    When we engage in fiber arts, we are creating something, but we’re also participating in historic traditions tens of thousands of years old. You are not only making art for your soul and future generations, you are embodying the work of our ancestors.

    Meadow Colden, The Woven Road, 2017

    The expressions change as the world changes. My Dr. Who scarves for the grandkids aren’t like grandma’s fancy work sheets. But the love and the care are all still there being passed down into the unknowable future. 

    I fight for these times together. I spent money that I don't really have to be here, and time that I don't have, and I'm missing work that I should be doing. And I might even be missing medical opportunities too. But this is more important. I'm living my story for them as well as with them, the kids are learning firsthand what this is, and it will help them prepare for when they get to this stage of their own lives. It's my job as a parent, and a person who is part of a family to share my life, share my story as well as just live it. Our stories help us understand who we are, and how we live in the world. And that helps the next generations have a better footing so they can adapt to the way the world changes. 

    This might be my mother’s cancer. It might even be my grandmother’s cancer. But the treatments this time will be different. They'll be better than for the women who came before me, but not as good as they will be one day for my decedents. And now, as it seems to be happening to me, I am glad of the insights us kids, me and my siblings, got about cancer just from living with my mother all those years. Hard won as they were, those insights put each of us kids in a better position to deal with it in our turn. 


    http://www.thewovenroad.com

    Dispatched: Sept 23 

  • 22 Sep 2018 6:00 AM | Contact Me (Administrator)


    It's all mayhem here. Everybody is healthy, it's cats and dogs, and teenagers, and prime-of-their lives adults, fully functioning at full speed ahead. 


    Saturday morning. On my second cup of coffee, curled up on the big sectional couch in the kid's basement. I am Skype messaging with my other son right now. Everybody is still asleep here. I was going to sleep in myself. We stayed up late drinking wine and talking into the deep night. But the cat meowed at the window early this morning and so I had to get up and let her in, and then the dog wanted out, and by then I may as well stay up and have a coffee. So here I am. 

    And it's suddenly into a totally non-medical life. They are completely caught up in their own thing. They are concerned for me. My son has turned down work for next week, My daughter-in-law is telling me to call her dad the doctor to get advice if I need anything, he'd be happy to tell me what things mean. But they are also just busy and caught up in their own lives. All of my life is just one part of that this noisy confusion of many lives playing out, out there in the wider world. It's a bit overwhelming because I was starting to live within this careful little bubble of managing my time and my mental state while I was adapting to this whole new medical element of my life. Well it's all mayhem here. Everybody is healthy, it's cats and dogs, and teenagers and prime-of-their lives adults, fully functioning at full speed ahead. 

    The only answer to death is the heat and confusion of living; the only dependable warmth is the warmth of the blood. 

    Audre Lorde, The Cancer Journals,1980

    I don't have any medical stuff scheduled, I can enjoy this distraction, I can step out of that medical life for a while and be an active participant in this life. There isn't anything wrong with me - other than the cancer bit - and it's not causing pain or symptoms. So I can do this. I just have to blink a few times and brace myself. 

    My husband drove me to the airport well ahead of my flight, I had a letter from the doctor regarding my radiation, turns out I didn't need it, but I wanted to go through security and customs well ahead just in case. I had a nice lunch in a real restaurant by the gate. I read my book. It was a two hour flight to Philadelphia, and a two hour layover there. So no worries if the flight is half hour late. The Philly airport is like a big mall, it doesn't feel like being in an airport at all unless you are right at your gate. They even had an art display of ‘yarn bombing’ or ‘intervention knitting’ by a craftivist street artist. Of course I felt at home and welcome in the airport. I had a nice walk around, a really nice meal in a Legend Seafood restaurant. White sangria and the best crab cake I've ever had in my life. It was a pile of rich meaty crab on a bit of Dijon sauce. With a crunchy corn and arugula salad on the side. Excellent. And then it was over to the gate, and a twenty minute flight the rest of the way to Baltimore. Excellent. 

    Big love and excitement from the kids and grandkids, pets when I got here. The dog was turning herself inside out with joy to see me. Fun. I feel better already. Smiling just thinking about it. Smaller things are giving me more delight these days. The cat purrs at me and I feel really good. The kids eyes light up when they see me and I feel really good. I'm happy. Delighted with life. 

    I particularly felt the need - craved the contact, really - of my family. 

    Audre Lorde, The Cancer Journals,1980

    Anyways. I hear folks getting up. And I want to have a good long shower this morning and get rid of the band aids on my armpit and boob. The biopsy things. Start moving away from that. And get myself a bit more organized and settled in. Set myself up for my life and home away from home here. 

    http://www.ishknits.com


    Dispatched: Sept 22

  • 21 Sep 2018 5:52 AM | Contact Me (Administrator)


    I am actually pretty bruised-up at this point. Both my arms. My arm pit, the whole side of my boob. I am as almost as bruised on the outside as I feel on the inside. 


    Friday morning, it's 7:30 am. I slept in today, but not as much as yesterday. 

    Yesterday. 

    Yesterday I woke up early, started my morning routine without coffee. By the time I finished writing I thought, what the heck, what am I doing being awake without coffee? I went back to bed. I fell asleep again. I remember my husband asking if I was intending to just sleep until it was time to go for the test, and I said, yes I am, and I fell right sleep just like that. Believe it or not it was 10:00am when I finally woke up. I never sleep in like that. Yikes. It was almost time to go for the test. And in fact by the time I had my bath, got dressed, dried my hair, did a couple of office emails, it was time to go. I wasn't especially hungry, I didn't have a coffee head ache either, or just a very slight one. 

    One thing I've learned about fasting these past few weeks is that you feel worse if you drink too much water. The best thing is to drink a glass or two, but don't try to fill up on water if you're not eating, it messes with your electrolytes or whatever. Just leave it be, be hungry. And I wasn't that hungry. 

    I felt okay. Cutting back on coffee these last few weeks paid off yesterday. I was able to go without coffee yesterday morning and not have a head ache. I was able to go without coffee yesterday morning and still have a dump in the morning. 

    This also paid off - on all my previous trips I've spent time scouting out the hospital itself. I've spent time finding and trying the best bathrooms, the best food, the best places to sit and hang out. The best bathroom is beside the small cafeteria below ground level. And that's the best food too. That's where the "in the know" people seem to go. Staff. And the wealthy patrons. They serve made to order sandwiches. It's got a small off the side bathroom that is very nice, and has two closed off cubicles. That's my spot. 

    The PET scan itself wasn't so bad. It did take two tries to get the needle in my vein, one attempt in my hand that will be a big bruise and one right in the middle of Monday's big bruise, that’s the one that worked. Monday's big bruise will be an even bigger bruise now. I am actually pretty bruised-up at this point. Both my arms. My arm pit, the whole side of my boob. I am as almost as bruised on the outside as I feel on the inside. 

    The endless exams, the bone scan to check for metastases, the high-tech heart test to see if I’m strong enough to withstand chemotherapy - all those blur the line between selfhood and thing-hood anyway, organic and inorganic, me and it. 

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

    Here is how the PET scan works. It's quite simply actually. I'm surprised that young doctor P, the resident, didn't know to tell it to me in this simple way. This is what the technician told me. Cancer cells, even benign tumour cells use more sugar than normal cells because they are so active. That's one of their defining characteristics. So what they do is make you fast so that your blood sugar is at it's lowest point. They make you rest and not be cold and not exercise so that your regular cells are not motivated to be working and taking up more sugar. And then they inject you with radioactive sugar water. You sit and "cook" for a while, literally they put you in a warm room with a blanket and a space heater, and then they take pictures of where that radio active sugar went in your body. Tumours will have more of it. Such a great, simple thing. Too cool. I liked it. 

    It would be miraculous if scientists could develop a way to inspect the rest of the breast and the axillary nodes by means of some harmless substance that  settles in malignant tissue. If a radioactive tag were put on this substance that settles in such malignant tissue, the way iodine settles in the thyroid, it could be injected and the diagnosis made by camera, instead of by needle or knife. 

    Rose Kushner, Breast Cancer, 1975

    Sugar? Cancer feeds off of sugar? Diabetes and overweight people are more likely to get cancer? What does all this say? Is sugar is a big, big problem? The sugar lobby is probably even more insidious than the tobacco lobby because in fact it's all our processed, cheap food. Brought to you by tasty simple carbs, sugar. I wonder. 

    Could this cancer have been prevented, and what could I do in the future to prevent recurrence? 

    Audre Lorde, The Cancer Journals,1980

    My blood sugar was good. They tested it when they gave me the IV, that was a big part of it, and it was good. 

    It's paying off now - I've been exercising all this time and I lost that all that weight last year. No diabetes, no blood pressure drugs. That makes a big difference now. 

    It wasn't so bad. I feel more at home at the hospital, and in that wing where they do those tests. Had a dump there. Territorial stuff I guess. And after the test I didn't rush out onto the street trying to catch the bus to come home. I stopped at that little cafeteria, I ordered myself a coffee and a croissant. I sat down at one of the tables and drank that first cup of coffee and ate that first bit of food. It was an easy bus trip home. I know the stops now, I know where to get off, the closest places to get on. 

    I got a cheque for my script work, I will get a cheque for my office job work soon. So that is one layer of stress gone. 

    I guess I needed that deep sleep yesterday. That bit of extra sleep. It's been a lot to take in these last few days, these past couple of weeks. My life is different now. I guess I do need to lie there in bed and dream about it a bit more. 

    The nice folks at the hospital said that there should be minimal radiation left in me from the PET scan yesterday, but because I'm traveling across the border today I should have a letter just in case. They'll fax it to me. I remember a very old man in the seat in front of me on the train the last time I went to Baltimore. The customs agents kept asking him if he’d had any medical tests, their gizmo was showing radiation, and he kept insisting that he was perfectly healthy. He thought they were going to keep him from crossing the border because he was sick. They had to be re-assured that he didn’t have some kind of bomb. English was his second language. I’ll feel better traveling with a letter from the doctors in hand even if I don’t have to use it.

    I am getting ready to fly to Baltimore today. That's today's big project. And at the end of this day I'll be sitting in the new hot tub sipping an umbrella drink. I'm looking forward to having this time together with my family before the shit really hits the fan. If it hits. It will hit in some form, I'm pretty sure. It's really just a question of how much and what colour.

    This is a good day to fly, just regular fall weather, people doing their regular fall things. It's going to be okay.

    For now. 

    One day at a time. 

    Appreciate each day as it comes, take each day as it comes. 

    Time to brush my teeth and get dressed. And look at this, I got to have my two cups of coffee this morning, and I get to brush my teeth with toothpaste and mouthwash too. And I have money in the bank. And I have kids that love, and like too, and who love me. And while I'm not as slim as I'd like to be, I am a lot slimmer than I was last year at this time. I'm thirty pounds slimmer. And the sun is shining through the trees that are making that mottled pattern of moving sunlight across my desk. I remember how I bought lace curtains in Iqaluit (it was actually a cheap plastic lace tablecloth, that I hung up in the windows) in order to create this mottled light, how I missed this kind of moving, mottled light up in that treeless place. Now I have it naturally, from a great big maple tree, right here, flowing across my desk. And at the end of this day I'm going to be in Baltimore. And there are going to be kids, and grandkids, lots of folks who love me. All around me. And there will be a dog, and a cat too. Pet therapy. 

    Here we go. Today is another day. 


    Cancer and sugar: Does changing your diet starve cancerous cells?



    Dispatched: September 21

  • 20 Sep 2018 5:49 AM | Contact Me (Administrator)


    No coffee for me this morning. I can have water and that's it. No pills, no mints, no brushing my teeth even. I couldn't exercise for the last two days. I couldn't be cold for the last two days. This is the prep for the PET scan. 


    Thursday, Sept 20

    Thursday morning. I am awake in the dark, fasting. No coffee for me this morning. I can have water and that's it. No pills, no mints, no brushing my teeth even. I couldn't exercise for the last two days. I couldn't be cold for the last two days. This is the prep for the PET scan. 

    Yesterday was a day off tests and medical stuff. I needed it. I'm still recovering from the biopsy experience. I'm not really ready for another test today. And it's only now that it's starting to sink in that this might only be the beginning. Starting October 15th we could move into treatment, starting October 15 it could be much worse. And then there will still be tests after that too - during that - and after that. I am acting like today is my last test for two weeks now, until the bone scan and then I'm not having any more of this medical life. But my husband is right. This is only phase one. This is only the beginning. 

    For some reason I am more afraid of today's test. The strange rules? The possible outcome of having to have a biopsy on a lymph node in my chest? Will I even agree to that? I could always refuse to do it. I'm holding that in the back of my mind. I'm hoping that this test will provide the answer. Make it clear that that lymph node is okay. And I'm hoping the armpit node is okay too. I've pretty much given up on the breast mass being benign. And realistically we are probably looking at a big tumour that has started to spread to the lymph nodes. And that is what mom had, and she recovered from that and lived another 10 or 15 years. But I am not her. This could be completely different. 

    I am learning to live beyond fear by living through it.

    Audre Lorde, The Cancer Journals,1980

    I was afraid of the doctor meeting day, and it did turn out to be the most traumatic and painful day so far. I hope that I don't have any reason to be afraid of today's test. I hope that today’s test will prove that things are okay. That's what I want from it. And not be too much of a nightmare in and of itself. 

    It will be a long fast. My appointment only starts at 12:45. The test is 2 hours long. I won't get to eat or have coffee until almost 3 o'clock. If everything happens on time. And we all know how often that happens. So. It'll be a hard day today. 

    I am just feeling weak and afraid, and starting to feel like this could be real, and bad and that all these tests are not going to prove that it was all a big mistake after all. The 95% cancer prediction will come true. And the next thing I know I will be right in it, and it will be worse than this. It will be worse than all these tests. And there won't really be any answers - ever. This is the first day that I've felt that. My husband's comment about this only being phase one when I said, 'after today I won't have to do any tests for a while.' That comment hit home, and it discouraged me. But it's only realistic. I wasn't being realistic. 

    Am I pissed at my husband for saying that? 

    Am I pissed at him for bringing me down like that?

    I am trying to hold it together. I was building this little wall around reality, taking it one day at a time from within that wall. I was busy and content making my little schedules and he just blew a cannon through the whole thing. 

    I do want to be with my kids and grandkids, they'll just be supportive. I'll get a break for a while, before we move into phase two. And then I'll come back here, and my husband and I will deal with it. In reality there will be a phase two. It will be us two living in phase two.  He’s right. Doesn't mean that I won't really enjoy the break with the kids and grandkids before it all starts up in earnest. 

    I still long for a simple orderly life with a hunger sharp as that sudden vegetarian hunger for meat. 

    Audre Lorde, The Cancer Journals,1980

    I'll be hungry today. I'm hungry already. But it won't be that bad. I've been hungry before. I should just get busy and do things, stay distracted. And really my only worry is the coffee headache. But I've been cutting back on coffee these past couple of weeks. I am down to two cups in the morning and at that rate I don't get the coffee headache, or much of a coffee headache. Crossing our fingers that it's enough. 

    Yesterday was mainly a film scriptwriter day. And laundry. And packing. This film project has two official writers and the other guy had to write up a script lickity-split to satisfy the broadcaster while I've been doing tests. I didn't even know about it. My husband the producer has been protecting me. He's been leaving me alone and not bugging me about my script work. Thank you to him.  But I worked on the script in the afternoon yesterday, and then in the evening we watched a comedy together, and we looked at the last of the footage with the director and the editor. And that was my day yesterday. 

    No food or drink after midnight. I'm fasting now. Writing and fasting. 

    Maybe I'll just go back to bed for a while. It's not as fun being up if you're not drinking coffee. . 



    https://www.radiologyinfo.org/en/info.cfm?pg=pet

    Dispatched:  Thursday, September 20

  • 19 Sep 2018 4:37 AM | Contact Me (Administrator)


    I stood my ground all the way with the old bastard. Toe to toe. But I have to say that it was brutal; physically, mentally, emotionally. Just being in that toxic atmosphere with all those misused women was brutal. 



    I am curled up in my chair with my second cup of coffee. Enjoy it now. Tomorrow at this time I will be fasting in preparation for a PET scan at 12:45pm. 

    Yesterday. What a wild day. It's a good thing that I booked it as a pure medical day. It was a pure medical day. A fuck up, solved a fuck up, go forward, and go back a step in time, to another era, day. A taste of my mother's cancer moment. A taste of what her world was like. And some results, but still not the results. 

    It was the same kind of stuff that's been happening in slow motion all along, but it was all speeded up yesterday. And I had two big family conversations too. So it was all of the medical things that I've been doing more or less all along in small doses crunched up into one big super medical day. 

    The plan was sensible. The appointment was at 10:30, for the blood test, and the new doctor, my oncologist was scheduled for 11:30. They tried to arrange it so that Dr. B joined us then and I could do it all in one appointment with two doctors. Consideration for my time by the scheduling ladies. My husband came with me for the first time because this was supposed to be the doctor-explaining-results-of-the tests meeting. That formal sit down, you have cancer and this is what it means meeting, and a chance to ask our questions. There was supposed to be some kind prognosis, and treatment plan. Which we all knew was not going to happen yesterday because they still hadn't even done the biopsy, much less had lab results from it. 

    And nothing can happen without a biopsy and lab results. I made up my mind on that account. Absolutely no treatment without clear information. Tests. Fine. I'll do tests up the yin yang (literally) as necessary. But no treatment without the test results. 

    Still, and this is how easily it happens - I did end up letting them book me for chemo starting on Oct 15. "We can always cancel." It takes a long time to get in, better to book and now, and cancel if necessary, rather than have to wait another month after we get the results.

    It was pure nightmare just to find parking. This is why I usually take the bus or get dropped off. We drove around and around the neighbourhood and every single spot on the street was taken. Even my husband who believes that using a paid parking lot is 'unsporting' finally gave up and we headed for the underground parking. He commented on how terrible it would be to live around there, imagine living with that parking situation all the time. 

    And then even in the paid parking lot it was full. We went down and down, six floors down below ground. People were double parked in the parking lot! There were attendants at every level guiding you, directing traffic. Wow. They directed you to park right behind another car. What? Then they took your keys so they could move your car if that other guy came back and needed to get out. Sheesh. 

    That was the worst parking scenario ever. Worse than any sports or concert event I've ever been to. Did I mention that my husband doesn't like resorting to paid parking lots in the first place? We were on floor S6. I wrote notes for everything, the floor, the A,B,C,D and the parking stall number. I was afraid that if it was 'freak out' news then our brains would be fried as we were coming out and then we'd have another nightmare trying to find the car in all that mess on top of freak out bad cancer news.

    We found an elevator. It was a tiny padded elevator that took us into a construction zone and then a winding maze. That is how you get into the hospital from the parking lot. It was not a fabulous introduction to this hospital for my poor husband. I had imagined introducing him to this hospital that I like for the first time. I imagined making a point of bringing him into the nice main entrance, and then going the long way, along the atrium hallway with all the windows and medical history displays. Not. It was definitely not that gracious introduction.

    And then we were in the general maze of the hospital. The general hustle and bustle of people going this way and that way, looking for our pavilion and the elevator to the our floor as many stories up as the parking lot was down. Whenever we stopped and looked stunned, and it was frequently because I didn't know the way from this direction, some nice hospital worker would stop too, and ask if they could help. They all did that; doctors, nurses, cleaning staff, whoever was out in the hallways. That part was nice. So I think the hospital did make a good first impression on my husband anyway even with the crazy parking situation. 

    And he was definitely impressed with the cancer floor. The comfortable waiting room chairs, and the little stands with ipad like things that connected to the internet so you could sit and surf the net or check your emails while you waited. And they let everybody use their cell phones, ipads and other devices too. Much more civilized that your usual hospital meat-wagon-line-up where you took a number, like say 219 and then waited on a folding chair for your turn. No using cell phones, wifi or devices.

    There was an elder gentleman, he dropped a five dollar bill and my husband said, "excuse me sir, you dropped a five dollar bill, oh, I guess not." It was on a string. The older gentleman sat down beside my husband and had a chat while I signed in. The elderly gentleman showed up again in the blood test area with a nail through his head trick. Again, my husband noticed, but no one else did. This is why you bring that second set of eyes. Well not precisely to see the magic tricks, it's not really necessary to notice an old guy doing magic tricks, but it is good to have another set of eyes with you - seeing the things that you miss. 

    It was another good blood test. That guy got two vials on one prick - no problem. They see the bruises on my arms from previous tests and do try to get it right for me. Plus that's all he does all day. Take the labels that you give him, ask your name to make sure you've got the right ones, draw blood, put those labels on the two vials. Yell out "next" and do the next person. All day long. He doesn't even get to stand up. He just sits there and draws blood. No wonder he's good. He smiled and looked pleased when I told him, “you're good!" Small moments. He's a kind of assembly worker. 

    Then we waited. All around us people came, and went, the crowd built up and disappeared. It was a big excitement when they called me, and then a let down when it was only to be weighed and have my height measured. I laughed, it was exactly like the weigh scale at the vet's where Moose used to have to get weighed before every appointment. He learned to walk in the door and go directly to stand on the weigh scale and wait for his treat. I joked with the volunteer attendant about how we are all getting shorter and fatter as we age, spreading out.  I prefer to think of myself as five three and a half, but it's okay if he calls it five three for the official record. 

    And we waited. The chairs were comfortable. It was nice sitting with my husband. He read his book. I knit. We waited another hour. I joked that it was like sitting in the airport waiting for a flight. I fully expected that at the end of this wait we'd get on a plane and go off on a holiday together.  

    At the end of the wait Dr. P came to collect me in person. The idea was that I would go in alone for the physical exam and then my husband would join me for the ‘talk’. Dr. P is a kid who is nervous being alone with an actual patient. He's a resident and he's big into talking about all the possible test/trials that I could take part in when they finally diagnose my cancer. He was so nervous I felt like I had to take the pressure off him. I almost fell getting onto the examining table when the stool slipped and I said, 'That'll change everything. If I fall off the table and break my neck, the whole treatment plan will go out the window', and he laughed. I am turning into my brother after all. Entertaining the troops. 


    This is the info that I got out of my brand new oncologist, young doctor, resident. 

    My heart is good, and that's actually a bit of a relief, and that means those chest pain moments must've been some kind of acid reflux, heart burn thing, and not a real heart problem. Good to know that. Generally that is a good thing to know. 

    My CT scan shows some kind of  little bone thing on my right hip. I will need a bone scan. He was surprised when I told him that a bone scan was already scheduled. 

    My CT scan show an enlarged lymph node in my chest. That could be a problem. They are going to do a PET scan. Actually he didn't even know if it was going to be a problem, I had to ask him. Is an enlarged lymph node in my chest a problem? Young Dr P had to leave the examining room to ask some more all knowing being down the hallway and then come back and tell me that yes it could be a problem and they would do a PET scan, and then a biopsy. In the middle of my chest? How do they get in there? He explained that that type of biopsy is difficult to do and painful. I thought of lung cancer lady and her warnings about really bad tests that make you suffer. I said I only would agree to something like that if the easy biopsy showed cancer. He had to go out of the room to learn how to respond to my refusal to sign off on the deep chest biopsy. He came back and said it was okay, the PET scan would tell them what they needed to know. And then he went on a bit more and quite specifically about how difficult that chest biopsy would have been and how it depends a lot on the skill of the technician, both how much you have to suffer as the patient, and how useful it is to the doctor. 

    So, the CT scan did not clear me. I am not in the clear. But it's not really scary either. It's not showing right away that there's a cancer that's spread throughout my body to lot's of distant organs. Bones and lymph nodes, I don't think of them as 'organs'. But I don't know what those results mean. It was hard to get a sense of perspective from the kid who was so caught up in all these specific details that may or may not have anything to do with me, and completely lost on general big picture questions, like, 'has it spread' that you'd think he would have prepared for that really obvious patient question, that he should have been able to answer without having to leave the examining room to get a second opinion on what to tell me. 

    No one told me about that chest bone thing, I looked it up when I got home. I guess lot's of people have it, but that shadow on the CT scan is what initiated the original bone scan appointment, an enlarged lymph node behind the bumpy chest bone. I just hope this hip one doesn't turn into a bone biopsy. More about that later. Biopsy. 

    We were in the middle of having this conversation me in my hospital gown and young Dr. P in his expensive suit with the tight pants when Dr B. burst into the examining room. He was mad! His red-haired Irish-looking face was flushed, "I can't do anything without a biopsy, I can't do anything without the results." He thrust a scrap of paper into my hand, "Here, take this up stairs, show it to this person, her name is right there if any one gives you a problem. Get it done. Today!" I told him that I'd called his nurse and told her there was a problem and he calmed down, a bit, "Yes, I know, that was good, you did good, you keep doing that whenever you notice something like this. You call, you say something. Keep doing it." And boom he was gone and out the door again. He never even looked at young Dr P. Not even a glance.

    So we are on the same page as to the priorities. I did not have to waste my energy psyching myself up to confront him about doing things without biopsy results. And I was impressed that he got it, stepped up and dealt with it so vigorously. That is the kind of doctor that you want to have in your corner when you are in a fight to the death - with death. 

    By then I knew the procedure for making appointments. You take your piece of paper to the scheduling ladies. Even if you have to stand in line again do not go directly to the places written on the paper. Those ladies are like mission control. They know everything and they know everybody. You go there first. You see those ladies and you let them know what's going on. And they take your pieces of paper and turn them into whatever is required to make whatever the doctors ask for happen as efficiently as humanly possible.  They called upstairs and told them that I was on my way. They said when I was done the biopsy, the fastest thing was to just go downstairs and book the PET scan myself, they called them too, and said I would be on my way shortly. And then boom, my husband I were suddenly on a new mission. All that waiting had turned into hurry up. Because now it was 2:00 and the testing departments all closed at 4:00pm.

    I think this fantasy of sitting, fully dressed across a desk from a wise, kind doctor who explains everything clearly, and answers all my questions with the exact right amount of information is done. Even the lesser fantasy of bringing my husband into the room and being prepared to have that important meeting in a hospital gown in an examining room with each of us taking turns asking questions didn't pan out. 

    It's all happening on the fly. 

    My poor husband was confused as to why he was being dragged around this maze of a hospital, and where the heck we were going, and even where the heck we were. He kept trying to get me to book the PET scan first. I said, "No, this is the priority, forget the PET scan appointment, the biopsy is key to everything, the biopsy has been the problem - we do that first. Dr B said, do it today, the magic mission control ladies said, 'go there first'. My husband was sure that we'd end up waiting again, sitting there all day, and not getting in, and then have to come back the next day. 

    This time there were two other women in that giant empty waiting room, but I got called from the waiting room within ten minutes of arriving and checking in. The call from the scheduling ladies changed everything. My husband was impressed. We'd barely got settled with our books and knitting. The woman who showed me the lockers where I had to undress seemed to have her shit together and told me right away that this was for the ultra sound, that they would try to do the biopsy today, but if not, it might be tomorrow or the next day. And so then the next thing I knew I was having an ultrasound. Nobody told said anything about an ultrasound. 

    The ultrasound technician was a kind middle-aged woman, in her prime. She did a pretty thorough job. I got to lie there and look at my mammogram images on the screen. She'd seen them already, the radiologist had also seen them already. It was good that I called Dr B's nurse and she alerted them to at least look at the images. They were prepared enough to wheel me in and start working on me as soon as Dr B threw a fit and raised hell. I guess he called up and it was all set before I even got there. We were a good team on that. 

    The growth often seemed to have acquired a life of its own, as if the cells had  come possessed by a new and mysterious drive to grow. This was not just ordinary growth but growth refined, growth in a new form. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    I watched my cancer on the ultrasound screen as she worked. It was not how I imagined it would look. It was like an pale alien spaceship floating in the dark void of the rest of my breast tissue. Calcifications. Castles in the air. It was completely different from everything around it. I could see that right away, I didn't need to hear her intake of breath to know that this was an alien living within me. Not a baby, but some other being; alive within me but not me, had taken up residence in my body. And here is the thing that took my breath away too. It was strangely beautiful. Not ugly and misshapen, not a troll, not a crab, but this strangely beautiful alien, castles in the air creation. The technician and I did both have this odd, shared moment of awe at the sight of it floating there on the screen. Erie, and strangely beautiful. Cancer. 

    In the folklore of science, there is the often-told story of the moment of discovery: the quickening of the pulse, the spectral luminosity of ordinary facts, the overheated, standstill second when observations crystallize and fall together into patterns, like pieces of a kaleidoscope. The apple drops from the tree. The man jumps from a bathtub; the slippery equation balances itself. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    And then, the next thing I knew the radiologist came in, ready to conduct the biopsy. I had become the priority. They fit me in, just like that. It was happening. That minute. No time to waste. No time to think. 

    It wants to live too, in its way, understand? 

    Alexander Solzhenitsyn, Cancer Ward,1966

    And right away I could see the cause of the biopsy scheduling issues and why this one test, this one part of the whole process had not gone as well as all the other tests even though this was the critical one. It was standing right in front of me. The problem. What we had was an old white guy, leader of a harem of young women, looking at boobs all day long, working with boobs all day long. No one to stand up to him. No one to contradict him. Absolute authority in his little empire of women. Whatever humanity he might have had was completely submerged in this arrogant bull in a harem of women. It wasn't only his staff. All his patients were women and it was all about boobs on top of that. He was a bully. He was a bully to his staff and they were all afraid of him, I could feel it as soon as he walked into the room. I could feel it in the way the ultrasound technician stiffened beside me. I could see it in their body language as the assistants came in behind him. 

    The first thing he did was make sly, critical, insulting bully remarks to that very capable woman who did my ultra sound. I hated him for that on her behalf. The rest of the women hoped they wouldn't attract his attention. They didn't want to be next, his next victim. That was their posture. The only woman with strong body language in the room with me was the locker room woman who first took me in to get changed and whispered the instructions at me. Perhaps she was the one who was named on Dr. B's piece of paper. In case of trouble, demand to see her. 

    Then he turned his attention to me. And he was not happy about the way I had disrupted his schedule, messed with his absolute control. He made sleazy insulting, arrogant, sexual innuendo jokes to me, not even to me - at me - performing for the other women who were in the room to assist. 

    There were three or four of them. One women in complete civvies. I don't know who she was. She seemed to be some kind of observer. The rest had roles that became obvious as we went. Standing by, taking things when he gave them to him, handing things to him when he asked. 

    They started doing the biopsy without any of the usual consent paper work, or the presentation of risks. He just asked me if I agreed to do it, verbally in front of the team. I said yes. And then he said, 'Well a women should never just say yes like that when they don't even know what they've agreed to, that's how you end up with a whole passel of kids, isn't that right?' and he put it to the women around him, professional adult women with husbands, and children, and careers in medicine, not to a group of ten year old boys giggling about sex and boobs. But that was his language. 'Imagine a woman agreeing to sex without knowing what it was, but that's what women are like, stupid that way, just agree to anything. And then they wonder why they get pregnant.' Those were the first words out of his mouth.  

    I was flat on my back, boobs out and exposed, strapped or held down, I couldn't really look around from there and see everything around me.

    But. 

    I still gave as good as I got. I matched him insult for insult, joke for joke. I turned it around. Every bit of wit I ever had, I used it. Hard as I could. Sharp as I could. I did it for those women. I didn't care about me, I'd be done and out of that place forever, before supper. But I could not let him get away with one single sexist slur unchallenged, not in front of those poor women had to go into that hospital and work for that childish bastard every single day of their career, especially the nice ultrasound technician. His treatment of her got my back up, but all of them were stuck with his constant verbal abuse, all of them were better than that, deserved better than that. It was a battle royale. A battle of wits. And I was winning. They were standing up straighter, they started to smile to themselves. They started to glance at each other out of the corners of their eyes. And then they actually started to smirk at each other whenever I delivered an especially good strike. They even started to talk themselves, not so afraid of attracting his attention.

    I impressed them so much, and changed the tone of the room so much that one of the women asked me what I did for a living. They all wanted to know. I said I was a writer. He said, "A writer, eh" and I could hear that he was speaking from that era when women were not considered capable of writing anything 'worthy' and he looked around with a face that said, let's all laugh together about her pretensions to be a writer, still playing to that imaginary crowd of immature males from a bygone era. Then that stupid doctor did say something about hoping that I wasn't going to write about my terrible experiences getting a biopsy. Ha, ha. The penny dropped. It dawned on him that I might actually write about my terrible experiences getting a biopsy. He heard himself say it. And that was the end of his running stream of crude, lewd jokes. Finally. The room got quiet. And he lost a bit of his arrogance. 

    It does no harm to have a streak of stubbornness, and a loud voice as well. 

    Rose Kushner, Breast Cancer, 1975

    At the end of it all the original helpful woman took me back to the lockers so I could get dressed and said I'd been a good patient. She thanked me for being a good patient. 

    The biopsy itself. He didn't get a tissue sample on the first shot. It took him five shots. He started to get frustrated and impatient, and he didn't freeze my boob properly, or wait long enough, and each one hurt like hell. And it sounded bad, like a staple gun, or nail gun, and he just kept shooting, and complaining that it was hard, whatever he hit was too hard, you can all see that, no good tissue there either, not his fault. It was five shots before he finally got two tissue samples that they thought were good. It was awful. And he asked me every time I gasped, 'did that hurt?'. I said, 'Yes, it hurt.' After he finished with my breast he did a lymph node biopsy. In my armpit. He did freeze that one properly, the gun thing was smaller too, he again asked me if it hurt - hoping to show the team that I was just a whiner, that was in his voice, see I was doing it right all along, she's just a whiner. But I said, 'no, that one did not hurt at all.'

    I stood my ground all the way with the old bastard. Toe to toe. But I have to say that it was brutal; physically, mentally, emotionally. Just being in that toxic atmosphere with all those misused women was brutal. 

    And it did not end well. I guess there was blood everywhere. He looked at down at me lying on the table and sneered. He said, 'It's disgusting. Somebody clean that thing up." And he walked out of the room. 

    One of the women took me for a mammogram after they cleaned me up. She explained that it was a light mammogram it just records where he'd put in the metal marker to show the place where he took the biopsy from. The two of us had a nice moment when I signed the consent form after the fact, and she saw my name on the form and said, 'Hi Janice, I'm so and so, nice to meet you." After the whole biopsy zoo and wiping down my poor boob and doing the mammogram on it afterwards. After I was upright and all dressed again, then it was Hi, I'm a person, you're a person. Nice to meet you. And I forgot her name.

    I looked at my phone and learned the scheduler had been calling to find out why I hadn't done the PET scan appointment yet. And had even called my husband whose number is on the list as my emergency contact to find out where I was and so it was a race for the two of us to get all the way downstairs before those folks left for the day. The PET scan place turned out to the exact same place as the heart scan. Not so hard to find after all. I got to go in there, talk to that same nice lady and make jokes about how I'd had such a good time there yesterday that I decided to come back again to see what else they had to offer. Some new doctor came to sign off on my form. It was protocol, he had to sign but I wouldn't let him have the form, I actually fought him for it. I only give my precious papers to the schedulers, doctors lose them and it's hard to get a new one. The scheduler apologized for not telling me that he'd be coming along to grab the form and told me I had to let him have it, it was okay. She gave me permission to hand over the form to the doctor. We all had a laugh even the poor, nice doctor. 

    And then it was me and my husband coming home. Me in pain the whole way. I should've brought Tylenols with me. If I had know I would've brought them. And you know, I think maybe I should just keep a bottle in my purse all the time now. Just in case. For all these hospital tests. You never know. It was a bouncy painful ride home. 

    My husband said we have to tell people in the office. He'd missed a meeting while waiting for me, he needed to have a reason, so I gave him the okay to start telling people. We told them that they think I have a cancer and they're doing lot's of tests and that's why I'm away a lot and distracted even when I'm not away. We'll know more in a couple of weeks. One way or the other. 

    And so began the second stage of my super medical day. Telling people. We're into another layer of telling people. Everyone in the film office knows now. 

    I listened to my book for a while. I had a bowl of borsht, comfort food, and I waited for my phone to charge. And for the Tylenol to kick in. Then I called my sister and finally told her. She was okay with it. We talked for a while. She asked all sorts of technical questions. She told me about all the people she knew who had biopsies and it turned out to be nothing.  

    I talked to my son, they were waiting for my call, waiting to hear the results. I was really honest with him, was just flat out honest about what's going on, what happened today, and what I think about it all. We decided to go ahead with the trip there seems to be this pause in the tests and treatment wouldn't start until Oct 15 at the earliest. I'd like to see them, I'm fine now, but that it might be harder later on, I want to take advantage of the chance to see them now. I'm looking forward to an umbrella drink and a hot tub when I get there on Friday night. They are looking forward to seeing me too. 

    My poor husband. I forget that my boobs are an important part of his life too. I forget that he hasn’t had all that long time of worry to get used to the idea of getting rid of a killer boob if necessary. I didn't pass on any details about the biopsy process, but he still cared about the pain I was in, he empathized with my feeling of being physically abused in a tender area. He's had testicular cancer. He knows. And he asked to see what they'd done to me. I showed him, but I didn't want to look at 'that disgusting thing' myself. My husband said it looked like bullet holes. He hugged me gently on other side. He is worried about surgery. He asked about surgery. I told him that they do less of that these days, that they do the chemo first, reduce the tumour and then do less surgery, less destructive surgery - except in the case of the genetic aggressive cancer when they might even remove the other breast too, even if it's not showing cancer. That's the one you need the genes for and that's the one that I don't seem to have. But we don't know until we know. 

    We watched TV. We went to bed early. I slept surprisingly well after all that. Woke up at five am. 

    Today is a non-medical day. The sun is up and shining. My journal is taking longer and longer each morning. And I have less and less time now that part of my schedule is given over to medical stuff. But it feels good work my brain through all these new experiences. 

    It feels good to pat myself on the back. I hate this medical shit. I avoid it as much as I can. I have lived my whole life avoiding it as much as I can. That was the whole reason for my exercise regime, healthy eating, mediation, all of it. Avoid medical shit. 

    Some people do the health thing to avoid death, I’ve been doing it to avoid medical shit. But I am being a good girl and handling pretty it well now that I'm in it. Stepping up and doing it no matter what. And I'm patting myself on the back over that. Good girl. Good patient. 

    Today I've got a few things on my schedule. Laundry for one. And one film script meeting for sure. And I think I will even sit in on another meeting too. Keep up with what's going on with those two projects. Distract myself. Of course all this happens when I have three jobs on the go, and pre-booked visit to the kids and grandkids in Baltimore. Of course. That is what life is like. Life is like that

    I look forward to being bored one day. 


    Dispatched: Sept 19

  • 18 Sep 2018 6:28 AM | Contact Me (Administrator)


    I am not afraid of having cancer. I am afraid of having to fight with the doctor(s) over it, and fight with my husband too. But I've made up my mind. I'm not signing on for anything at today’s appointment. It's too soon. 

    He could not completely surrender himself to the cure until he understood it and believed in it. 

    Alexander Solzhenitsyn, Cancer Ward,1966


    Tuesday morning, on my second cup of coffee, the sun is not up yet but dawn will start happening soon. I am enjoying my two cups of coffee, now that I've cut back to two, with an occasional bonus expresso during the middle of the day, I confess. I’ve discovered that I enjoy these two cups just as much as I did the three, or four, or five cups in the morning. It's the first two that are really good, after that you don't notice them so much any more. So they are not really worth it. But your body does notice even if your brain doesn't. So this is a momentary little lesson for food, and booze and all of these addictive things. You notice the first three chips and really enjoy them. The first cookie or two. The first piece of chocolate. You should stop then. The rest of them are not worth it. Just like morning coffee. I've become this addiction expert. Aren't I just sitting up here on my high horse this morning! 

    I won't be there long methinks. 

    Today is the day. Today my life takes a turn. It will go in a new direction. I have lived the medical tests life for the past two weeks. I've been in and out of the hospital for the last two weeks. I've been taking the bus to a new place and finding the right stop to get off and get home. I've been finding my way around that hospital, getting to know it. It's like a maze with all it's pavilions, different elevators that only go to certain floors, and narrow, under construction corridors where you can't turn around and you don't want to get behind a fat man with a walker if you are late for your appointment just because you were riding around in the wrong elevators and discovering the closed doors of a whole new world of disease and ailments that you never heard of before. 

    My daily life has taken this medical tone already. But I'm still healthy. I come and go as I please. I take the bus home from the hospital because I'm fine. There is nothing wrong with me. Except for the cancer part I'm perfectly healthy. I haven't even done all the tests yet. So I know that we won't know everything today. But it will still be a turn. We'll start to know the results of the tests we've already done. And hopefully the radiologist has made a report about my images. And hopefully he/she is not as alarmed as the original mammogram doctor and that is why they haven't made an  appointment for me, I've been triaged out of "urgent". 

    But most likely it is simply not done. That radiologist. That elusive biopsy person. Probably they did not do anything yet. Not a thing. 

    My biggest fear is that the doctor will want to go ahead with aggressive treatment as if for the worst form of breast cancer without getting a biopsy result, and he will try to scare/bully me into it. And that my husband will listen to him. Man to man. And that there will be two doctors at once on that train trying to railroad me and that will be intimidating. My plan is not necessarily to say no, but to at least say that I can't say yes right away, at least buy myself some time to think about it. And really - I want that biopsy first. 

    I do not want him blending the biopsy with a surgery and jumping ahead - he's already jumped ahead. I want this to slow down and wait for the biopsy. That's what I want. I'm afraid that I may have to fight for that. And I'm afraid of the fight. I am not afraid of having cancer. I am afraid of having to fight with the doctor(s) over it, and fight with my husband too. But I've made up my mind. I'm not signing on for anything today. It's too soon. 

    Perhaps we will soon see the day when the good old American practice of combining surgical biopsy in a single stage with mastectomy will join the Halsted on the dusty museum shelf. 

    Rose Kushner, Breast Cancer, 1975

    I feel like I'm being set up. I feel a bit like all this other stuff has been a set up to scare me into agreeing to a bunch of aggressive treatment when we don't even really have the diagnosis yet. 

    That may not be so. All this other stuff may be a precaution and this meeting might turn into, "We can slow down now. The genetics people think that you are not a good candidate for the BRACA gene. The CT scan is clear, it hasn't started to spread yet. There is still a mass there than needs to be dealt with, it will take a few months of treatment, but we can wait for the biopsy results and the receptor results, and base our treatment on those facts." That's what I'd like to hear today. 

    And then I want get a call for the biopsy to happen sometime after I get back from Baltimore. 

    Really is that my actual ideal? Make it all fit into my travel/family schedule? My work schedule? How nuts is that? I don't want to fight with my daughter-in-law any more than the doctors or my husband. I'm afraid I might have to disappoint her. I don't want to give up my job. It feeds me. And I don't mean that just physically, it feeds my mind, and my ego and my spirit too. It challenges me. I like my job. I want all of that to keep going. On track. My life. That is my life. My family, my friends, my work. 

    Yesterday was the MUGA heart scan. It was the best test yet. No fasting or prep involved. You don't even have to take off your clothes. You get to feel like yourself, like a human being the whole time. I brought my knitting, the little project bag clamps onto my purse and it's pretty easy to just shove the knitting inside and follow the technician to whereever and whatever they are going to do to you. The MUGA scan was 'not exactly as advertised' compared to  the internet explanations. And it really does go to show how you can't rely on the internet too much. 


    Here is what happened to me. No prep. Keep all your clothes on, even your glasses. They give you on injection. Wait twenty minutes. Give you a second injection and then they put you under the machine with a wrap thing to hold your arms down at your side. It feels cozy, they dim the lights. And you lie there and zone out in a meditative way by yourself for seven minutes while they take one set of pictures, and then another seven minutes after they turn the camera to the side while they take another set of pictures. Then you are free to go home. It's done. That's it. That's all. 

    They managed the injections in one shot each. I was really impressed! But I do have some bruising in both places. They won't be able to use those veins for the blood test today. It's a purple mess on the inside of both my elbows. 

    The crowd in the waiting room was different for this test. It wasn't so much people in various stages of cancer treatment. It was mostly healthy seeming people like me. But serious. Not talking. And there were some very, very old people. Nearly dead people who didn't seem to know where they were. The big adventure that I heard in the background as I waited, and then went through my seven minutes of glory, was that they'd sent down an old lady with no diaper from some higher floor. They were deciding what to do about it. Put her in the machine without a diaper, just a towel under her? Or wait for someone to come from upstairs and put a diaper on her. None of the technicians downstairs wanted to deal with the towel, the results of her sitting there without a diaper, or even to put a diaper on her. They wanted somebody from that higher floor to come downstairs and put a diaper on this old lady. When I left, I passed her in the hallway, still sitting in her wheel chair, IV bags attached, hospital gown but no diaper, head hanging down in sleep, unaware, grey hair dyed brown, the dye has been growing out for a while now and leaving grey roots. 

    I did feel my heart do skippity bits while I was in the machine. I felt it ramp up and do things, and also settle down and be really calm and steady. Who knows what the results of that will be. I think my heart is good. I exercise a lot and I don't have any shortness of breath. But I have also had the odd time where I've had severe chest pains that went away after a while. I've always thought that it was just some kind of heart burn or acid reflex, but who knows, might've been a heart attack thats damaged the muscle. You start to think more like that when they are testing you so much. Common sense tells me otherwise. I'm too healthy generally. I feel too good. I can do anything I want physically, all my organs are working just fine and I rarely even get sick. 

    I have to remind myself about that. 

    Yesterday the genetics lady called. She asked me lot's of family questions, and then just trusted my word that I was telling the truth and that I was getting it right. That was interesting. Usually doctors don't really do that. They have to get objective tests, they have to decide for themselves, and I get it. Those things are important. 

    But I actually I feel responsible now, more responsible because this genetics person just took my word for it, over the phone. Now I wonder if the information I have is right.  Perhaps mom did have all this chemo and radiation and I just didn't know. In those days people didn't talk about breast cancer. That's not helpful. It doesn't help anybody in the next generations. But that's the way it was. And now I can't know any different, so I did qualify my statements, saying I was young then and don't know exactly. 

    But the clear facts, my mother was one of two sisters who got breast cancer, who got it after 50 and survived it for 10 years at least, went on to die of malignant melanoma. My mother's sister did not get cancer, her niece did not get cancer, but oh, yeah, she was adopted, so that doesn't count. My grandmother's sister, my great aunt had breast cancer late in life and died from it. My grandmother died from something when she was in her thirties or forties. My mother said stomach cancer, which could really be breast cancer that had moved somewhere else, the doctor only came in at the very end, nobody really understood what he was saying and doing. My grandmother never went to a hospital, she was treated at home the whole way. My mother’s younger sister said it was menopause and the doctor came out to the farm and tried to treat it with injections of horse piss, but my grandmother died anyway, of menopause. At home. Horribly. Both her teenaged daughters, my mother and my aunt were traumatized by the experience of caring for her and you can't really rely on their stories. So all in all the picture is a bit murky especially the further back you go in history. And even if there were doctors and medical records to look at there simply are not enough female relatives, just two sisters in each of the two previous generations, and only two sisters in my generation too. And they weren't young enough when they got their breast cancers, except maybe my grandmother, to make it look like this is that scary, aggressive genetic breast/ovary cancer. The gene therapist lady does not think that I have the gene for that. Good news. 

    She will make a note for Dr. B to have in his file on me today, she will take it to her team and have an official response for me by Friday. She thinks that I am at the beginning of treatment, and yes it was good to explore this because it's a shame when people start treatment less aggressively and then discover that it's that genetic aggressive cancer, that they have the gene and then later, when it should be all over they have to go back and get more surgery. So I get it. And this leads me back to saying, let's do the biopsy first. Let's find out first before we rush into the first surgery. If a surgery is even required. Yes, it will be some kind've surgery I'm sure. Something is there. 

    She was interested in both the melanoma and the colon cancer though. Why? because I have family members who got it young. On my father's side, my cousin got in his twenties, I guess that's a big genetic sign. My brother got it before fifty. More recently my other cousin died from colon cancer. A brother and two cousins. One living with a colostomy bag since he was in his twenties. One had to get most of a lung removed. One died. And she was interested in the melanoma too. Because mom died from it. That's a significant sign. And because she got it first when she was young, in her thirties. And because she got it twice. 

    Dying is a serious sign of cancer risk. 

    The risk assessors take a cancer story more seriously if somebody dies. 

    And I remember now, after she asked if any of my family is being watched for melanoma, has had suspcious moles removed, and I didn't know - I remember now that I did. I had a suspcious mole removed. When I was in my twenties a family doctor said that mole looks terrible, and it's in a bad spot where you can get sunburns and your bra strap rubs on it. It was bleeding as I recall. It was a big black mole that did bleed every once in a while. On my back where I could not see it. It was probably getting ready to kill me. That doctor just took it out there and then. No fuss, no muss. Just did a local anesthetic surgery in his office. Mole gone. Problem solved. When I look at all the complicated tests and things that are happening now, and think about how deadly that mole could have become, and how straightforward it was to deal with it, and here I am 40 years later. Keep a perspective. It can be simple and still work. Don't let the whole medical machine overwhelm you. In the end it's still your life. 

    I have to keep my ears open for what the doctors say to each other, I have to guess, fill in what they leave unsaid, get my hands on medical books, and figure things out for myself. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    And, the old lady in the wheel chair yesterday was a reminder that dodging this cancer bullet does not mean that you get to dodge a miserable death. Doesn't mean that you get to live forever after that and not die at all. Beating cancer is not a guarantee that you'll get to drop dead of a heart attack on the dance floor. Getting really old and frail isn't so shit hot either. Unless you have a lot of cool things you want to do with your life between now and then. 

    The genetics lady said that they probably won't recommend me as a good candidate, and actually she said that's not a bad thing, I shouldn't feel bad about that, but that they would like to talk to me again in a few months after I've dealt with this stuff that I'm going to have to go through and see about the colon cancer and the melanoma. 

    I feel better. I think. I didn't think it was probably going to be that aggressive, kill you within a month of finding out you have breast cancer kind've cancer. So getting some kind of confirmation about that instinct is good. Not so much the colon and melanoma part though. 

    It was a nice day yesterday. On my way home from the hospital I stopped off at the magazine store. I bought myself a cooking magazine. I've been borrowing the chef's cookbook books from the library, and liking them. A new cooking favourite. And I bought myself a little square of fudge. You can buy fudge  just one square at a time at the magazine store. I treated myself to one square of fudge, a mental, be nice to me thing after my go-to-the-hospital-and-get-two-radioactive-injections morning. A piece of fudge and a new food magazine. I felt like I'd been treated, like I was a good girl and deserved a treat. 

    Today it's basically all morning for the medical stuff. This afternoon. Well it depends. It depends on how today goes. Maybe this afternoon will be phone calls telling people what's up. I can't imagine there could be a clear plan without that biopsy and the results. I don't think I can probably do those phone calls today. I think this is all going to get put off for another few weeks now, I think maybe it will become a bit less urgent. 

    Unless. 

    I'm a bit of a mess, thinking of all the options that it might be, and all my responses, what they might be. 

    So I have blocked off this afternoon with nothing. It might be a long walk up the mountain, a long meditation walk, or a walk through the botanical gardens. It might be me and my husband having lunch at a Thai restaurant by the hospital. It might be me baking bread, reading my book, knitting and puttering. It might be me sitting and having a good cry on the balcony, or in the bedroom. 

    Tomorrow I have laundry to do, a Skype meeting with the director about a new documentary series coming up. I should probably look at everything that's been happening ahead of that meeting so I can comment on it knowledgeably. I still want to wash those windows in the kitchen/dining room. I might do that. That's the last of the housework to dos on my list. 

    So the same mix of stuff for tomorrow. A bit of work, a bit of me work, and a bit of me indulgence. Today can be all me indulgence if necessary. Today is a big day medical wise. Today a lot comes together, all the tests so far will add up to something, they won't be the whole picture, but they'll start to make a picture. We'll know more by this afternoon. And how I let my indulgent day play out will depend a bit on that info. 


    I find that the meditation, even the lame, homemade, made-it-up myself way I've gone about it has helped me generally, and concretely during this process. I go into meditation mode and just focus on my breath when we're going these tests when they basically ask you to do the freeze part of fight, flight or freeze. It was good for the ct scan and the heart scan too. I'd recommend this as a basic life skill to have, one that you will actually use to good effect during your life. Like learning how to fall in judo class, it's actually an important practical skill to have. And it was interesting, because what came to me while I was in the heart scan machine was images of the mountain walk - in springtime, when the leaves are new green and spring light is shining through. Those images came to my mind as I said to myself, breathe in, breathe out. I just followed my breath like a regular meditation, but the images from my walking meditation came to mind. Five counts and look out, five counts and and look down/ahead. Imagines of the tress on the mountain in spring, they were clear in my mind, that's where I was in my mind when I was actually in the machine.  So I'm glad I've been doing that little meditative walk all along. And yes, I will keep doing it as much as I can. 

    Would I be able to maintain the control over my life that I had always taken for granted? 

    Audre Lorde, The Cancer Journals,1980

    I've been continuing to exercise, walking and real exercise too; yoga, weights, stationary bike. And I've made a point to drink at least three extra glasses of water on the test days when they inject me with bad stuff. I imagine that I am helping my body get that stuff out of me. 

    I may try to get an extra swim, sauna, whirlpool in on Thursday before I leave for Baltimore. I've mentally really decided to go to Baltimore, even if it turns into only a weekend visit and I have to come back for the biopsy right away, or a surgery. It won't happen that fast, so I'm going anyway. Going to Baltimore for as long as is possible anyways. That's the plan. A really big self-indulgence. I want to spend time with the kids and grandkids. 

    Dispatch: Sept 18

  • 17 Sep 2018 6:25 AM | Contact Me (Administrator)


    Tests have been conducted. There could be results. Papers with answers written on them. But there is no way we can know for  sure that it's cancer, and what flavour of cancer it is, and so what treatment option is the most appropriate. Not without a biopsy.


    Sitting in my office, it's another beautiful dawn. The sky is lovely at this time of day and I am sitting here in my chair surrounded by this lovely pink dawn light. 

    This is my second cup of coffee and even though they didn't tell me to fast for this test today I think that I will stop after this cup, not eat breakfast and then have a nice bowl of borscht when I get home after the test. That's the plan. 

    I know it’s ‘bad’ to skip breakfast. But my stomach doesn’t wake up until two hours after I do and anything I eat before then just sits in there like a lump. My sister is the opposite. I think her stomach wakes up two hours before she does. She gets out of bed hungry like a bear out of hibernation, she always eats breakfast. That breakfast rule is easy for her. We have both been like this all our lives. I think you need to listen to your own body as well as follow the rules. Science is a good rule of thumb, our daily lives are better for it. But it doesn't know everything, and it's not always right. That is the whole idea behind science - guess, find out, be ready to be wrong.  

    Coffee. It has really good stuff in it, and bad too. They say some people have a gene that protects them from the bad stuff and so coffee is good for them. And some people don’t have that gene so it’s bad for them to drink too much coffee. That’s why they got such inconsistent results when they did those mass studies for so many years. It’s good for some, bad for others. When it comes to coffee apparently it depends on the individual. And we are all individuals not statistics. Keeping that in mind for some of the medical questions coming up. 

    I'm being careful to keep the coffee down to two cups a day in the morning so I don’t get withdrawal headaches. In future days this will work for other tests, and surgeries. It's time for me to start living like this. I've restricted myself to two cups of coffee before and it's fine, and it's not even a problem, well except that I’m not quite as lively and entertaining as my usual self. My smart status dips a little further into 'failing'.

    Today’s test is MUGA. It's a heart scan to see if my heart is strong enough for chemo.

    The endless exams, the bone scan to check for metastases, the high-tech heart test to see if I’m strong enough to withstand chemotherapy - all those blur the line between selfhood and thing-hood anyway, organic and inorganic, me and it. 

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

     Did I mention that I haven't even had the biopsy yet? 

    Tomorrow is the scary day. Tomorrow is the day that I meet the two doctors at once, my husband is coming with me, he'll be at my side the whole time. He's afraid too, I can tell, even if he doesn't say anything. It might go badly. 

    So that is where I'm at this morning. Yes I am worried about how it might go tomorrow. 

    Yesterday. I did make the cabbage rolls. And they turned out good. One cabbage made two casseroles and a number of lunch sized individual meals. I froze all of one casserole last night, we'll have cabbage rolls for supper tonight, and I'll freeze what ever is left over from that. I also single servings of borscht too. So I am well set with comfort food. And I’m also feeling that nice, harvesting, fall feeling, using the best cabbage of the season for the cabbage rolls. 

    And I knit a bit on my new toque. And I listened to a couple of chapters of my book. 

    And I finally called the kids. My granddaughter answered the phone and we had a bit of a chat first. Then she got my daughter-in-law on the line. I'm glad I had the lid thing as a conversation starter, because her voice went into it's, 'she's calling to cancel tone'. I deserve that, I have had to cancel in the past. She explained how they re-did their tickets to go to Amadeus on Sunday on account of me coming. And I told her about the mammogram, and that I'm going ahead and getting on the plane at the usual time, that all looks doable, but that I might have to go home earlier. Depending on the results of these tests and stuff. And then I talked to my son too, I could hear her explaining it to him in the back ground, but I wanted to talk to him and explain it directly myself. And then I had a chat with my grandson, he told me that they have a new hot tub. Hell ya, I will be enjoying that! 

    So it is done. It's a big relief. I was dreading doing that. I've learned that the first 'cancer' conversation is the hardest. It's a shock for people so you have to manage the conversation through to a normal kind of end and then let them go - let them get used to the idea before you talk again. Then it comes around and gets easier. My friend D texted me yesterday asking how I was and if I had results yet. She came around, got over the shock of the inept way I told her, as I knew she would. I answered that I was still getting tests, still waiting to hear about results and was spending my time waiting by doing too much housework and baking, she laughed back in text and told me that baking was okay, but it's the eating all that baking that I had to watch out for. So. It's okay with us now.  

    Everyone close has been told now except for my sister and my oldest BFF. Both of them are on holidays right now, and we don't have a firm diagnosis anyway. I will tell them, I'll probably tell my sister on Tuesday after we talk to the doctor and get a better idea of schedule. And now it's down to just my sister that might be shocked, and might make me have the shocked conversation. Everybody else I can just tell. I can even email them or text them. 

    My son said that they've been trying to get him to work more at the theatre, and that he could work full time, and overtime with them while I'm there, and he'd been holding off agreeing to that. Maybe he sensed something. Anyway, now he's said that he'll say no, he'll try to make sure that we have time together. I'm glad. He gets it. He gets that things have turned. They may even cancel their tour if this goes south badly. He gets it. But also we're not going down that road until we have to. He grew up with my mother's cancer. He's lived through my brother's cancer. He knows everything takes longer than you think it should. We'll have a better idea on Tuesday. 

    What can we know then? We can know if it has already started to spread, whatever 'it' is. That is critical information. We can also probably know more about what it is, the ct scan will give a different view. And we can know if I have cancer markers in my blood, and maybe we can know if I have that bad gene for the super aggressive cancer. We could know all that. Tests have been conducted. There could be results. Papers with answers written on them. But there is no way we can know for  sure that it's cancer, and what flavour of cancer it is, and so what treatment option is the most appropriate. Not without a biopsy. I don't think. But I'm willing to listen. 

    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

    And probably they can tell me likely scenarios, waiting on confirmation from a biopsy, this is what they know more than they did two weeks ago, and these are the likely scenarios. 

    Gotta go, it's 7:30 and I have a test appointment at 9:15. It takes an hour to get there. I need to get dressed and be on my way now. 

    MUGA Scan

    Approved by the Cancer.Net Editorial Board, 11/2016


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