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Cancer Daily Dispatches

A personal daily diary of successful cancer treatment.

Welcome to the story of my cancer journey

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

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

June 15, Saturday

Epilogue


  • 16 Sep 2018 6:11 AM | Contact Me (Administrator)


    Go swimming, write a to do list, make cabbage rolls, get your muga scan to see if your heart is strong enough to take the chemo.


    It's easy to detox; just let your body use the great systems it has evolved over thousands of years to get rid of whatever is harming you. But if it's booze, drink less as well. 

    Sir Colin Berry, pathologist


    Sunday morning, and it was great to wake up and walk into my office with the sun shining through the windows. All this light! We took the air conditioner out and I finally washed these front windows. Fall cleaning and a brighter office. Yippee. So my entire fall cleaning project is actually almost done now. Well ahead of the first snowfall. 

    Last night I had my first medical nightmare. It was an intravenous nightmare. I dreamt I had this IV in my leg. It was doing good things, but when it was time for it to come out the nurse never showed up to do it, and so I decided to take it out myself. I was remembering the ct scan in my dream, and it was quite simple in real life. But when I tried it in my dream it turned out that the iv was the start of this huge long tube full of blood that ran from my ankle all the way up to my thigh. At least that far into my body. And I don't know if that was the end of it or not. I woke up at that point. Bam. Awake. No sense finishing that dream and wanting to find out how it would end! 

    Must every medicine be administered through an injection? Where do you see such a thing in nature? Among animals? In a hundred years this will be laughed at as savage. And how is the needle applied? One nurse hits the right spot, another jabs you all over the arm. I won’t have it!

    Alexander Solzhenitsyn, Cancer Ward,1966

    I did cuddle with my husband, just my hand on his shoulder, I didn't want to wake him, but it was enough to comfort me, and I thought about how I won't have that when I'm staying in the guest room taking care of the grandkids. I guess I can survive a few nights in an empty bed. And I might have a dog or a cat to give me that physical-warm-breathing-mammal comfort. 

    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 

    Then I went back to sleep and slept deeply, deeply until after the sun was fully up and shining in the windows. I probably missed another beautiful sunrise this morning. I took a picture of yesterday's sunrise and did get a lot of likes and nice comments. 

    Today I've scheduled myself to make cabbage rolls. That's a fairly big project. I make enough for us to eat a meal or two and then I freeze them in single servings for quick lunches and suppers. I'm doing this dual fall thing, putting up food and cleaning. It's another way to enjoy the season.  

    And now I have a bit of a deadline. Two deadlines. One is Friday, before I go to Baltimore. And the other is Tuesday before I find out the scope of the prognosis. Which I can't really know until they do a biopsy, which still isn't even scheduled. But the ct scan will tell if it's spread. That will show up. If it's clearly already metastasized that will probably show. And if there are cancer markers in my blood that will probably show too. But they won't guide the treatment. I don't think. But we will know more by Tuesday night. Not all of it yet. But more. 

    And my heart. I already know I have that prolapsed mitral valve - it does this backwash thing that isn't a problem in my real, daily life. Apparently 10% of the population has it. But I'm still a bit cautious because our friend D has it too, and he has been getting strokes. The chemo drugs damage that valve, people with normal valves get this from the chemo and then they are at risk for heart attacks and strokes. So, do they do this chemo for people who have it as a pre-existing condition? That will be a question. I might not lose my hair after all. And I realized that maybe mom had it too, it's supposed to be genetic, and maybe this is why she never got chemo during all of her cancers? So much we don’t know. 

    I had a good swim. I had a good full-sweat sauna. Breathing hard and sweating felt good. Those are two of the secondary ways your body gets rid of toxins. But liver and kidneys are the main machines. Drink enough water. Don’t stick too much bad stuff, like booze, tobacco or ct scan dye in your body in the first place. The old Russian healers would also say - circulation, circulation, circulation so - exercise too. I personally like a sauna. I've been having them since I was a little girl. There are many versions. Nordic spa. Sweat Lodge. Banya. Old fashioned health practices from across cultures. My homemade at the Y on the cheap ‘spa’ day. And I gave my joints a nice full body massage in the whirlpool too. Everything felt better after that. Just my usual weekly, done it for years now, feel good routine. Nothing new even though there are new toxins injected into my blood. 

    How are you supposed to stay healthy when your life has you running ragged? This seems to surprise people, but the old advice of a balanced diet, regular exercise, making sure your vaccinations are up to date, and not skipping your annual physical? It’s still good advice.

    Because there’s no fairy godmother, no magic wand, and you can’t turn back last night’s partying with kale after the clock strikes midnight. 

    Why Your Detox Is Bullsh*t by Yvette D Entremont, Cosmopolitan, Jan 5, 2016

    It was drizzling rain when I came home. Cold and drizzling. I was wearing my new, just finished baby alpaca wool toque and my wool jacket. It was about right, the wool on the toque and jacket shedding the water and keeping me warm - even if I did start to smell a bit like a wet sheep-dog riding the bus home.

    Last night's movie was Cas and Dylan. A Canadian road movie about an old doctor dying of a brain tumour driving across the country to bury his dog before he dies and a quirky girl who invites herself on the trip with him. He kills himself at the end of the movie, with an IV bag. So suicide was the theme of both of this weekend's comedy movies. How weird is that? Two movies from the comedy section and they both end in suicide. Clowns laughing on the outside, crying on the inside. But at least this one wasn't so misogynist. But it is interesting. Both of them did keep the myth of the grumpy man saved by the quirky, sweet girl alive. The main difference was one grumpy man had a real reason, and a human heart, and a good backstory. And the other grumpy man was just a jerk who deserved everything he got. Interesting. 

    I found my reason to call the family in Baltimore. I'll find out if this new ceramic lid that I just bought will fit their old ceramic jar. And then I can mention the mammogram and whole cancer adventure and the possible complications without that being the main reason I'm calling. Of course it is the main reason, but this business with the jar lid is a way for me to start the conversation. 

    So that's on my list for today. Tell them. 

    Make cabbage rolls. 

    I realized that I am making these lists, and doing these lists because it helps me to do the things I don't want to do. 

    I do not forget cancer for very long, ever. That keeps me armed and on my toes, but also with a slight background noise of fear. 

    Audre Lorde, The Cancer Journals,1980

    I make a list that has four different things on it, something for me to indulge myself, something for work, something for the house to make me feel productive, and something for this medical story that I don't want to do. But surrounding the don't want to do thing with all these things that I do want to do I make sure it gets done, and I remove the emotional content. It's not so traumatic, it's just another one of those things in life that you have to do in order to live the life that you want to live. Make your bed, take out the air conditioner and wash the windows. Make a new toque to go with your fabulous new winter coat. Tell your kids that you might have cancer, start preparing them. Just another thing to check off the list. These are the things you do to live. Go swimming. Make cabbage rolls, get your muga scan and see if your heart is strong enough to take the chemo. That's how I'm living right now. Making these lists, keeping it perspective that way. 

    And it's fall. And this is what I do with my life every fall. I gather it up, I get it under control again after all the summer indulgences. I start living a regular exercise, mental health, get control of my eating life in the fall. I live like this right through until December. Then I move into my major office panic where I am responsible for everything, the buck stops at me, and I am the one in control of budgets, schedules, staff happiness, delegate happiness, nitpickers happiness all the way until June and the big yearly event is over again. And then I let it all hang out, I release all control, I am happy to be a guest at my friends and families homes and cottages, and a passenger in my husband's vacation plans. I didn't manage to resist that sweet release of control this year either. Let somebody else be in charge for a change. But I did get my own two priorities accomplished this past summer. Moose's ashes have been meaningfully dealt with, and I had time with my granddaughter. So it was my summer vacation too even if I didn't have to organize the whole thing. 

    And who knows where we will be next year. Who knows. 

    Death is just a certainty. 

    It's life that's full of mystery and wonder. 

    My new motto. 


    Debunking detox

    http://senseaboutscience.org/activities/debunking-detox/


  • 15 Sep 2018 7:19 AM | Contact Me (Administrator)


    You don't know why she needs to cheer herself up. I was there because I might have killer boobs. That's why I was there. Cheering myself up.



    Saturday morning. There was the most spectacular sunrise this morning. I took a picture and posted it on Facebook, I put on sweats, a hoodie, big socks and slippers as well as my big red housecoat and had coffee on the balcony. Enjoyed the moment. Shared the moment. 

    Yesterday, I got my little list done. I did clean up the whole stairway; swept, vacuumed, washed the handrail and wall around it, the door & doorway coming into the apartment, the door and window in the door at the bottom of the stairs, washed the stairs. It's all done. I made the new pizza dough recipe, the one that has to rest for 4 hours, with the 00 flour, and I made up a batch of homemade pizza sauce using the basil from my front balcony herb pot. Then I went to the library and the wool store. 

    There was an older woman in the store, she said she was feeling down so she came to the store to cheer herself up. It always cheers her up to go into the wool store even if she knows she will spend money, 'oh well it's worth it to spend the money to get cheered up'. She was very chatty. She was cheering herself up. Perhaps her husband has died. Perhaps he's ill and she has to care for him. You don't know why she needs to cheer herself up. I was there because I might have killer boobs. I might have cancer cells racing through my whole body right now. They may have already metastasized. I don't know. I don't know anything right now. I'm in limbo. That's why I was there. Cheering myself up. I don't know why the other lady needed to cheer herself up - maybe her maid quit. But I think not, she was old enough to have real reasons, even if she had been a spoiled human all her life, she was still old enough to have real reasons to cheer herself up with a trip to the wool store. 

    The notion that a tumour must reach a certain size before cancer spreads is a medical anachronism. National Cancer Institute studies of thousands of patients have shown that even a tiny lump, if strategically located, can disseminate malignant cells to other organs, sometimes by-passing the axillary nodes entirely and traveling via the blood stream. 

    Rose Kushner, Breast Cancer, 1975

    While I was in that neighbourhood I saw a lot of women who looked like lung cancer lady. Same hairdo, same makeup. Wealthy look. I kept thinking that I was seeing her in her natural environment, outside of her hospital gown, walking around the streets. She could be on those streets, she had lung cancer, a tumour too big for surgery, but even in the hospital she was walking around just fine. I noticed a lot of women who could be her walking around, riding the bus, going to the library and the wool store. I guess they've always been there, I just didn't really notice them until now. 

    Who - including the doctors - could say whether those deadly cells, those landing craft, had floated past in the dark, and where they had landed their murderous crews? 

    Alexander Solzhenitsyn, Cancer Ward,1966

    I sat and read a book in the old fashioned greenhouse at the edge of the park before I came home. I sat there and thought about all the times I’ve been there with my grandchildren. They liked it. It was nice to sit there and remember, and nice to see a mother come in with her two kids and listen to their squeals of delight when they spotted the fish in the pond. It wasn't sad. It felt just normal and continuing. I felt the times with my grandkids, and it was nice to be there on my own too. Just me, looking through my book, watching the greenhouse world go by for a bit of a break before hitting the outside world on the way home. It's a long bus ride.


    The new pizza dough had over-risen and fallen down by the time I got back, I saved it by using the crusty part as the bottom and just kind of dumped it into the pans upside down. We put on our own toppings. I had a glass of red wine with it. It tasted fine, the crust was thin, and it was more crunchy than usual but I don't know if it was the dried out part, or the new dough. I made enough sauce for two batches of pizza making. 

    We watched Filth, that was our Friday night movie. It came from the comedy section. But it was the exact opposite of everything I had been looking for in comedy. I wanted something laughing at human foibles. I wanted something laughing at death in a human way, I wanted something delighted with life and the goofiness and surprises of it. Instead it was a misgoynist story of a guy who is a total jerk trying to be king of the world who screws up everything, about a guy who just doesn't get it. And who blows his last chance, and who kills himself at the end of it. Laughing as he dies. Sheesh. Not really a comedy after all. 

    After that I got my new Louise Penny audio book and took it to bed with me. I lay in bed, listening to someone read to me. And that was nice. It was a nice feeling. These books have darkness in them, but they also have people who fight the darkness, and eccentricity that is just eccentric and not dark. So I slept deeply all night long until 5:30am and the start of this beautiful sunrise. 

    That was yesterday. 


    Today is going to be a regular Saturday. Today is going to be a day off work, and a day off of maybe having cancer. I'm going to water my houseplants. Clean up my office, do the general housework, go for my 'homemade spa' at the Y, sauna, swim, whirlpool. When I get back I can start my new knitting project, listen to some of my book, have a nice nap. A normal day. Hopefully we'll find a good comedy to watch for our movie tonight and then we can have a good belly laugh together. 

    I am live chatting with my friend J as I write this. I just told her that I'm waiting for results on a suspicious mammogram, so there we go, I'm setting people up so it will be less of a shock when I actually have to tell them. I think it will be a 'when', but I also think it may be that 'the prognosis is good and the treatment is not so bad'. I am hoping for a cancer that hasn't spread yet, and that responds to targeted treatment. That's what I'm hoping for. My really first hope is actually an infected cyst/gland. If that had happened inside my boob I would be going through all of this, exactly like this.

    Last year at this time I started losing weight. I was back to exercising, had started started losing weight. It was the beginning of my usual fall fitness and healthy eating regime. It’s what I do after a summer of travel and visiting all the old friends and relatives. Feasting every night. I stuck to the health regime all year. I slowly lost 35 pounds and I got quite fit and quite strong. 

    The year before at this time I was in Tofino. I was with my brother and sister. A sibs holiday together. We were riding around in a rented convertible, staying on Chesterman Beach, in a place complete with its own hot tub on the beach. I learned to boogie board. It was fun. My brother's girlfriend made us an Iranian dinner one night. My brother made his world famous lasagna, and I made my marinated honey and white balsamic cedar planked halibut & salmon, with fruit salsa and creamy polenta. The freshest halibut and salmon are in Tofino, at the edge of the continent, feels like the edge of the world! We went out for dinner. We had wiener roasts around a campfire. We took long walks along the beach. We all got along. It was a good time for the three of us sibs. We were close when we were little and our parents didn’t know what to do with us. We grew closer after our parents died. We grew closer still after my brother got cancer. 

    He is still as handsome as ever. Funny and charming on top of that. But he's not the same as he was before. After colorectal surgery you can still drive a convertible but not for too long. You can't sit for more than an hour or so. You can still go for a walk on the beach. But you can’t do it after breakfast. You need to stick close to a toilet after you eat. Every meal. All the rest of your life. 

    But at least you have a life. 

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

    Rose Kushner, Breast Cancer, 1975

    Tomorrow I'm going to make cabbage rolls. I'll talk to my kids and let them know what's going on. But I want to do it without it being "the" phone call. Just "a" phone call. Perhaps through wow? Maybe as a part of that Skype conversation that we do on the side as if we were playing a board game together; by the way I has a suspicious mammogram, getting a biopsy, mostly these things are nothing, and which quest do we want to do next? 


  • 14 Sep 2018 5:22 AM | Contact Me (Administrator)


    The hard thing for me yesterday was getting to know the other people who were in the waiting room with me. The other cancer people in their hospital gowns and IVs, circulating dye through their veins while sitting on chairs.



    Every woman must decide her superstition for herself. 

    Rose Kushner, Breast Cancer, 1975


    Friday morning. 6:00am. It's only just dawn now and I'm on my second cup of coffee even if I don't have to start fasting at 6:00. I'm getting myself into a routine of less coffee now, trying to cut back to those two or three cups and that's it. Two cups. Trying to cut back to two cups again because I expect that there will be more tests, more fasting in the days and weeks and months to come. 

    Yesterday was the ct scan. I didn't know what to expect, I didn't know how I would feel so I basically gave myself the whole day for that. I got up early, did my coffee drinking before six, brushed my teeth and that was it. My husband drove me to the hospital and dropped me off. Eventually I managed to find the right tower and the right room.  

    K. Turned toward the stairs to make his way up to the Court of Inquiry, but then came to a standstill again, for in addition to this staircase he could see in the courtyard three other separate flights of stairs and besides these a little passage at the other end which seemed to lead into a second courtyard. He was annoyed that he had not been given more definite information about the room. These people showed a strange negligence or indifference in their treatment of him, and he intended to tell them so very positively and clearly. 

    Franz Kafka, The Trial, 1925

    For a while I was the only one sitting by myself, without a caregiver, and I thought that perhaps this is worse than they said, maybe I do need somebody with me. But it was fine. The test itself was just fine. The only, minor, trauma was getting the iv port into my vein so they could inject the dye (iodine) It was a young woman and she dug around in one arm for quite a while before she gave up and tried the other one, and then she had to dig around that one for a while before she finally got it, but she did. So I will count that as two tries even if it did involve digging around both times. I know my right to demand a new technician if they can't do it in three tries. I learned that after the time it took five tries in one arm, and then three in the other for a regular annual blood test. 

    The hard thing for me yesterday was getting to know the other people who were in the waiting room with me. The other cancer people in their hospital gowns and IVs, circulating dye through their veins while sitting on chairs. Old ladies mostly. One was missing a leg. One had almost no hair, was on her 15th round of 17rounds of chemo, her daughter was complaining to the women in the next chair that her mother gets chemo three times a week, but she never gets a day off because then her doctor books all these tests on her non-chemo days. The mother was a frail looking woman, probably around my age, but looks older. Her daughter said her mother hadn't slept the night before, worried about the test because she can't take the 'don't move, you have to be still' part of it. I gave myself a moment of gratitude for all the yoga and meditation I've done over the years. Who knew that I was actually preparing myself for a medical experience like this where I would be asked to be 'still' and breath on command. 

    All I could think of was Alexander Solzhenitsyn’s Cancer Ward; I don’t belong with these people. 

    Rose Kushner, Breast Cancer, 1975

    Then there was the woman sitting right next to me, slim and fashionable even in her hospital gown. Full make up. Expensive haircut. She saw that I had a Louise Penny book too, we must be friends, and that old lady told me how she started coughing blood at the beginning of August, it's a lung tumour, the tumour is too big for surgery, she was a smoker all her life, it's her punishment for all that smoking and her vanity to stay thin by smoking. She was both accepting and angry about this punishment from God. Punishment. For vanity - and smoking. She had a good life, she had a better life because she was attractive and men liked her, rich men liked her. She explained that she’s being punished for that now, but she would do it all over again. She'll take her punishment. They are going to do some really terrible tests on her, they have already done some really terrible tests. She suffered during those tests. Even the tests are a punishment. She deserves it. But a ct scan is nothing. Don't worry about it. You’ll be fine. I asked her which was her favourite Louise Penny book.  

    I have spent many hours wondering what I have done or taken or been exposed to that might have caused the cancer. My suspects have ranged from estrogens to our microwave oven and the colour TV. One of the psychiatrists who was helping me said his patients usually blamed people, not things. They often blamed themselves and felt that cancer was a retribution for past sins. 

    Rose Kushner, Breast Cancer, 1975

    The test itself was nothing to me. I didn't feel the dye going into me at all. Nothing. And they whip you in and out of this doughnut thing that tells you when to breathe and when to hold your breath for about five minutes - and that's it. The only way I knew that there these cancer causing dangers involved was when everybody hightailed it out of the room to get themselves safely behind a wall that has a heavy duty window before they hit the go button on the machine. And they do that in the dentists office too. So not all that scary. Afterwards the technician removes your iv thing and they make you wait five minutes to be sure that you're okay, and then if you haven't passed out or anything then they let you out. The door is locked. They have to key punch you into the area, and they have to unlock it to let you out too. I just took the bus home. In the rain. 

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

    Rose Kushner, Breast Cancer, 1975

    The big thing about that was that I had to pee for most of the bus trip, and while I did manage to finally get myself off the bus there was no such thing as stopping and shopping. I scurried home as fast as I could because my bladder was bursting. So, for me, that was the most uncomfortable part of the whole procedure. 

    They give you a lot of fluid to drink. I had to pee right before the test. I told the technician and asked if I could use the washroom before they hooked me up, because they'd told me that I would feel like I would have to pee, and some women even said they felt like they had peed even if they didn't. I told her that I already felt like I had to pee, so better for all of us concerned if I did it first, just to be sure. She let me go pee. And I was fine for the test, and the main technician did give me a respectful human-being nod as I left a the end of it. 

    Why? Because of the pee thing, being responsible and courteous about it? And not peeing in their machine? Because of me keeping a perspective and being a human-being not falling into my own body misery? Because that's what I am trying to do the whole way through all this, keep falling into my own body and misery, to remember that the whole point of all this crap is to keep me going as a human being not as a meat bag, not just bag of skin filled with meat and organs. Don't know why he nodded. Maybe I have an especially attractive bladder or something. But it was nice to get that nod of respect. Nice to nod back and have that little bit of human being moment there in the ct scan factory. 


    I am not my brother. But I would like to be more like him, he handled all these medical things by going into entertainer mode. He was funny. He was charming. And of course he's been a handsome man all his life and that helps too. I have my funny moments, but I'm not that kind of entertainer. But I still think I did okay, I also stood out from the crowd, I didn't get a laugh, but I did get a nod of respect. I asserted myself as a human being. And down the road I may get a laugh too. 

    My nurse finally called me back last night. I told her about the lack of movement on the biopsy front, and she got it, she pulled up my records and told me that nothing has happened with the biopsy, they have not even looked at my images yet. Nothing. She told me to still go to my appointment on Tuesday, and that she would give those nurses on a message to at least look at the images by then. So, it worked - slowly. Something has happened that wasn't happening before. I did fall through the cracks, but I figured it out and have spared both me and this nurse some shit down the road. But I still don't have a biopsy. And nothing real can happen until that's done. And we won't really know anything until that's done either. So, it will be less of a meeting on Tuesday, that's my read on that. It can't be the big meeting without the biopsy. 

    It means that I have to go on like this, in this limbo state for a bit longer. It means that I don't know if I need to plan for a big time off, a gird my loins for a big medical adventure - or not. I need to keep going forward with my work as if it's nothing, in case it really is nothing. And I need to keep going forward with my trip to take care of the grandkids in the same way. And at the same time I need to be ready for this to turn into a really big deal. That too. Both at once. And I'm glad that earlier on in my life I decided to live it that way, always have a plan for what works for both - get hit by a bus tomorrow or live to be one hundred. 

    I was happy that I had a bowl of borscht waiting to be heated, and a plate of vareniki. I was hungry when I got home from the ct scan, and that was perfect, especially on a cold and rainy morning. I'd scheduled myself a completely free afternoon, gave myself permission to do nothing, with a few self-indulgent options if I felt okay. One was to go to the botanical gardens, and the other was housecleaning, one of the fall projects. I didn't do either. I felt okay but I didn't do either. 

    I had my nice lunch. Then I took a deep nap. Then I got up and did some office work. I finished my book and downloaded the next Louise Penny book so I will have that to start on and keep me going through the next round of tests and plane travel too.  

    The other thing that happened yesterday is that I had a another good facebook chat with my granddaughter yesterday, quite a long one actually. I have learned not to be so "parenty”. I’m not the parent. I just go along with things. She didn't go to school on the snow day, but school was opened, and when she went the next day she had all this work to catch up on. I was on her side, man it's crazy that school was open, I agree with you, and she came around, on her own to saying, it's not so bad, I just have to catch up on the work that I missed on my own. We talked about weird and wonderful places in the world. It's on her bucket list to go to the weird places that are listed on Wiki. Not the old, 'grand tour' of Egypt, churches, Greece - but the weird places on Wiki like the bra fence. It was fun, we talked about places we could go. Take a trip together, a weird wiki trip around the world. And she told me she made a new friend, and that's good. She's finding her way around the school, making friends, getting settled. She complained that at her old school their mascot was a knight, and at this new school their mascot is a bulldog. It was like going from being nobility to being a pet. I sent her a laugh and told her that she would always be nobility to me, and cute/lovable as a pet too. That made her happy. And it was definitely a better answer than my old - the new school is a better school type of response that I might've made/probably would've made, if I had not spent those three weeks with her this summer, three weeks getting to know her better her and feeling where she is in her life, who she is, and how much she needs of what from me to help her get to where she wants to go. This year, and this new school is a real turning point for her. And I am more able to be there for her now. 

    What did I learn from yesterday? I am doing the right thing to enjoy and consider these as, days off, when I am not in the medical system doing medical things, and am not in pain or under stress. And yes, it's important to stay mindful of why you are putting yourself through all this shit, and yes to even remember that while the doctor determines the flavour and type of shit, that the real decision about whether or not you want to put yourself through it lies with you. 

    But could one do such a thing? Question the doctor’s right to heal? If one thought that way, doubting every scientific method in use today, for fear it might be discredited or refuted in the future, there was no telling where one would end up!

    Alexander Solzhenitsyn, Cancer Ward,1966

    Today, I can go the to library and the yarn store. Stop for wine on the way home. Do up either some pesto or a pizza sauce with the basil that needs to be cut. Maybe I should plan for make it yourself pizza's tonight? Start the dough with the new fancy flour this morning before I go? Get red wine. pizza and red wine for supper? Could start my new knitting, could start my new book. It could be a full, self-indulgent day off. Waiting, but enjoying the lull before the storm too. 

    Tomorrow. Saturday. The regular houseclean, water the plants, clean out my office, wash the kitchen floor, sweep, vacuum. Go swimming - for sure. Get home. Knit, listen to the radio, read my book. Hang out. Watch TV together. Our traditional Saturday. 

    Sunday. Make more peanut butter cookies. Make cabbage rolls. Hang out and read, knit, listen to the radio. Have my usual Sunday afternoon. I'm making the cabbage rolls partly to freeze, so that I have my own comfort food for those days of coming home from the hospital. Just like yesterday, I loved coming home to homemade borscht just like my mother would've made for me - if she was alive, and if she was really that kind of a homemaker mother, which she never was. Me being a nice mother to myself. Making homemade borscht for me just as my sons would do if they were here and near, just like my sister and brother would do too. 

    So I could do the pizza for tomorrow night. Plan the dough tonight and have make it yourself pizza tomorrow night. That could work. 

    Oh life is so complicated. 

    And these are the good, and easy days. 

  • 13 Sep 2018 4:51 AM | Contact Me (Administrator)


    'What about that bump on my head that’s been there for twenty years? Will they think that it's cancer and try to give me brain surgery for it? Will they find new bad things? Will I pass this test?' As if it was something I could study for and prepare myself for. 


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

    Audre Lorde, The Cancer Journals,1980

    5:49 am. I got up at 5:00am and actually was awake quite a bit before that. Why? Today is ct scan day. It's full on medical shit for me. 

    But I'm not afraid of the ct scan. I feel good about doing the ct scan even though you do think things like,  'What about that bump on my head that’s been there for twenty years? Will they think that it's cancer and try to give me brain surgery for it? Will they find new bad things that I don't even know about. Will I pass this test?' As if it was something I could study for and prepare myself for. 

    But that's not why I was awake half the night and got up at 5:00am. I got up because I have to start fasting, not even water, starting at 6:00am. I need my two cups of coffee or I'll get a headache. I was awake half the night and got up early so I could drink coffee before I start fasting. I ask you, is that an addict or what? 

    It's also comforting for me. That too, it's comforting to sit here in my cozy chair typing away and drinking coffee. I'm on my third cup. It's 5:52. I'll be okay. This is my morning ritual. I'm starting my morning in my usual way. I'll be okay today. My husband is driving me to the hospital this morning. He'll leave me there and come to pick me up later if I need it. It should be all over by around 10:30. 

    I'm not worried about this test. They bugged my brother. They bugged him so much that my sister used to have to go to all the ct scans with him. But I don't see why it’s so terrible. As I understand it, they process you, put dye in you, wait for it to circulate, and then do the scan. This scan will tell a lot. It will tell them a lot about this lump in my breast for one thing, it will tell them more. And it will also tell them if it has spread, if I have other cancer in my body in other places. So I'm really glad we're doing this. This is an important test. I'm lucky I'm getting it, and I'm lucky we don't have to pay for it. So no anxiety on that front. It's just the no coffee part that stresses me out. 


    I have booked myself an empty day, in case there is some kind of body shock afterwards, either from the dye or just the whole process. Maybe I'll find out why my brother hates them so much. I can come home, have a nice lunch - made borscht yesterday, and bought sour cream. I can come home to borscht and vareniki and sour cream. A nice comforting lunch. And then we'll see how I feel. I can nap and read my book all afternoon if I want. I've given myself permission. And if I'm feeling energetic then I can do a few office emails, and maybe take on one of the fall cleaning projects - either the windows or the stairs, for something to do, to feel productive. 

    So that's this day. 

    Yesterday was a stationary bike day. Cocktail. That was my music. It felt good to get back into that routine. Bike and bath, and then laundry. I did the guest room sheets, so we are good to go on that front and all caught up on laundry. 

    I'm starting to become more controlled again. It's the stress, it's managing stress and the uncertainty, it makes me want to control my days better, not let them just play out however, and that includes food. I've started to eat better again. I like to eat better. I made borscht and kale chips yesterday. These are my ideas of treats. I'm going with that. And I'm exercising again. And I drank more water and ate less food. But I'm not going to be mean to myself about food. Not now. 

    But once cancer is present, it cannot be reversed or diminished by a move to a better (that is less carcinogenic) environment. 

    Susan Sontag, Illness as Metaphor, 1978

    And I sat there thinking, even though I'm going through this stress now, and may/will probably be going through surgery/radiation/chemo stress in the near future, I would rather be me, and have my cross to bear than be one of our friends who keeps having strokes and be slowly losing my marbles like that. I feel lucky. But I also know that getting one thing, cancer, doesn't mean that you're protected from the others. I  may still end up going down the stroke road too. 

    So what was the use of pretending? Beyond that cancer he would have to accept something further - the thing that had made him shudder and turn away for two years: The fact that the time had come for Yefrem to croak. Pronounced like that with evil glee, it seemed easier. Not to die, but to croak. 

    But these were only words - the mind could not conceive of it, nor the heart accept it. 

    Alexander Solzhenitsyn, Cancer Ward,1966

    The Spirit of the West guy announced he’s got early onset Alzheimer’s. He's only 51, ten years younger than me. He's 51 and he's had colon cancer already. He has both at once. And I think of  my brother and what he has to do to manage the results of his colon cancer, he has to pay attention to what he eats and when he eats. He has to manage his food intake in a whole different way now. What if he got Alzheimer’s? He wouldn't be able to manage that anymore. He'd forget. He'd shit himself. He would start shitting himself early on in the game. It would be a problem. 

    Today I'm going in for the ct scan. I have the exciting part of my book to read while I wait for the dye to circulate. And music if I'm too distracted for the book. I've charged my phone, new batteries in my noise cancelling headphones. I should be good. And I've got a second book ready to start when this one is done. I should be good. 

    I worry about this trip to take care of the grandkids.. I worry that I'll be disappointing the kids if I can't do the trip because of all this cancer stuff. That is a wrong worry. I'll disappoint them more if I die. But then I thought about it. Really. When I was the age that my children are now both of my parents had been dead for ten years already. They died when I was 32. My sons are 41 and 44. They will survive. They are not little children. I'm not a young mother leaving babies behind. I'd like to live longer, but I don't want strokes, dementia, or years of declining frailty. I'm 62. Another ten years would be okay. Five years. Twenty years is like a whole second lifetime that I could have. But I've had a good life so far. This is not the end of the whole world, even if it might be the end of my world. 

    It's a weird and kind of wonderful soft dawn light this morning. It's 6:30 am, my coffee addict rush is over. I've had my three cups of coffee and brushed my teeth. I don't have to be at the hospital until 8:00am. My husband is going to drive me. I can sit here and write and enjoy the light. It's raining, and foggy, but there is some sun behind that and there is this bit of glow behind the clouds. In about an hour I'll have to be getting packed up and leaving. But I have a bit of time to just enjoy this moment. The light, the business of the city below me, the stillness of the mountain. 

    Once I accept the existence of dying, as a life process, who can ever have power over me again?

    Audre Lorde, The Cancer Journals,1980

    Would it be a bonus life, if I prepare myself now? If I feel mortality now. Really feel it. Then how much of a bonus will each day be after that? Would it be worth it? I am glad that I had all those back problems in my 30s. They were debilitating, and they gave me an insight into what old age could be like, not being able to get around, having that restricted life. And then I got over my back problems and I had a whole full more vigorous life. I might not have gone for it in the same way if I didn't get that taste of infirmity first. That wasn't a death brush, it was an old age preview. This is shaping up to be a brush with death. And it might be a good thing in the long run also - if I survive it. 

    And now it's time for me to go get ready for this ct scan. Here we go. Wish me luck. I want to pass this test with flying colours. 


    CT scan: Cancer Research UK


  • 12 Sep 2018 5:42 AM | Contact Me (Administrator)


    The future is just an idea in your head. Nothing will be the same after this. You know that. But on the other hand - nothing has changed - yet. 

     

    "Even when the appointment was simply for a checkup at the outpatient clinic, a person who was directed to the cancer division did not sleep nights." 

    Cancer Ward, Alexander Solzhenitsyn, 1966 


    Wednesday morning on my balcony at the crack of dawn. All quiet on the street below.

    Yesterday the nurse from Dr. B's office called before I could call her.  She set up an appointment for me to see the blood oncologist. I need to go in earlier in the morning, 10:30. Get a blood test, there is some kind of wait involved with that and then hopefully at 11:30 I'll see both doctors at once. 

    It's changed my feeling about what's going on here. They were going to put off that oncologist appointment until they got some results that indicated cancer. I assumed it was the biopsy. I haven't had that done yet. The only thing I've done so far is the blood test. Maybe they can spot cancer from a blood test? So I looked it up. And sure enough they can see some cancer markers from a blood test. The fact that they made the appointment indicates to me that yes, there were some cancer markers in my blood test. 

    So I feel more like it's going to be a cancer. And maybe even a cancer that's spread. 

    It's more scary now. My day or two of just letting the whole thing lift off my shoulders ended with the phone call from the doctors office and the internet search for blood test cancer markers. 

    We don't know anything. Nothing is true yet. But I feel like it is something. I suspect. I'm afraid. 

    This reminds me of being pregnant for the first time, when you know, but not officially, before you're showing, and before you've told everyone. This is going to change your life. You know that. But you can't really imagine it. You can't really know how your life will change until you're in it. It's going to be physical, and hard, and painful. You know that much. But right now that future is just an idea in your head. Nothing will be the same after this. You know that. But on the other hand - nothing has changed - yet. 

    "But this lump is alive, a fetus with it’s own will." Novalis, 1798

    And because it's fall now. Because the results of this long drawn out physical process could be death not new life it also reminds me of when dad died that on a glorious fall day.  How it happened so fast.  But also how it took so long for everything to play out afterwards. How long it took for us to settle before we could all go forward from there. How mom died before the year was out. She couldn't go forward. 

    "Cancer is a demonic pregnancy." Illness as Metaphor, Susan Sontang, 1978


    Life and death moments. They have huge repercussions - but they build slowly. Nine months pregnant. Nine months between when dad died and mom died.  

    For now I am savouring these last, free, pain free, breath free days of perfect fall weather. My favourite season. And yes this mixed feeling about it does remind me of when dad killed himself and we were all thrown out of our regular lives. This moment in time is like that, and the weather is the same and the season is the same. And oddly, it is still my favourite season. I still love this fruitful harvest mood, the golden leaves and deep blue skies and if this has to happen to me, then I want it to be now, in the fall when the season itself will help me get through it. I'm glad it's not dead of winter, or heat of summer. 

    You just have to put one foot in front of the other and keep on going even if you don't know where you'll end up. I remember last year at this time when my dear buddy L was to work one day, having chemo the next day, being able to work the day after and then being too sick to work for a couple of days. Getting into a routine of that, working two or three days a week. And it was all for nothing. The horror of what he went through last year was all for nothing.

    We don't know that for me yet. We won't know that until after the ct scan, and the bone scan and these other bits. And the biopsy results and the receptor tests. What the heck is a receptor test? 

    Pace myself. 

    Tomorrow is ct scan day. I start early, but I end before lunch. I'll have the afternoon off. I haven't planned anything. I don't know how I'll feel. It might be shock from the dye, and that general sense of being assaulted, stabbed and treated like meat in a hospital gown and I'll want to come home and snooze on the couch, be human, be me. Just be. Or maybe if it's a perfect day and I don't feel too abused at the end of the test then I'll treat myself to a walk in the park. We don't know. I've blocked off the whole day tomorrow. I'm ready for what happens either way.  

    Last night I dreamed dead people. We were deep in the west coast rainforest working on a documentary. Our film crew was in the dream. My parents were in the dream. The dream had dead people who looked at me. They opened their dead eyes and looked at me from the trees. The alive people became dead. The dead people became alive. I tried to yell at them. I had to make them stop switching places but I didn't have a voice. My voice was gone. 

    That isn't true. 

    I guess I really was yelling in my sleep. My husband woke me. He held me close, he wrapped his arms and his legs around me, and just held me. He turned off his ipad and just held me. I thanked him for saving me, for waking me up, and saving me. And then we talked quietly about nothing much, without moving until I fell asleep again. 

  • 11 Sep 2018 5:46 AM | Contact Me (Administrator)


    When the whole cancer thing started to come up in my mind, then I just let the mental images of those lanterns in the night fill my mind, visually without words, and I relaxed. I let go of medical stress. I can’t do anything about it in the middle of the night, it doesn't help to think about it then.



    "I won't think about that today. I'll think about that tomorrow" 

    Scarlett O'Hara, Gone with the Wind, 1939


    A sunny morning after a long deep sleep, I slept so hard that I didn't wake up until 7:00am and then I had a coffee headache. Actually it was a lack of coffee headache. Yesterday I walked up the mountain and back, and then around the Botanical Gardens for the Magic Lanterns. That's one reason I slept so deeply lots of walking out in the fresh air.  When the whole medical/cancer thing started to come up in my mind, then I just let the mental images of the lanterns in the night fill my mind, visually without words, and I relaxed again. I let the stress of things I can’t do anything about in the middle of the night just go. 

    There was a dream, we were creating some performance space in a big old barn and we were all happy working together on it. My husband and I went to bed in one corner. A farm dog put his chin on the bed and looked at us with those brown eyes, wriggled his eyebrows at us.  It  was a big goofy looking dog, and I said, yes sure patted the bed, and the dog hopped on the bed all happy circled three times and laid down right in the middle of us, a big furry dog - a big happy, furry dog. Full of joy. That's when I woke up out of the dream briefly, and then fell back asleep again and slept right through to 7:00 this morning. 

    In the recognition of the existence of love lies the answer to despair. 

    Audre Lorde, The Cancer Journals,1980

    Yesterday I did a bit of office work, legal papers sent in, and a bit of member stuff, the crazy couple that's always trying to join but never seems to get their act together finally replied to a two year old email explaining how to do it, and said ‘please call us right away, we can't figure it out’. Sheesh. But they are also a sweet old couple so I accommodated them. 

    I had the place, and the afternoon to myself. It was a beautiful day. So I did my walk up the mountain. It was a little walking meditation. I made it up myself. Here is what I do. Look outward into the distance for five steps, then down at the middle ground and for five steps. Just see, don't think. Just experience the change of visual perspective. Every five steps it is a slightly different view. I find that after a while I start to hear more, and I start to smell more too. Even if this ‘meditation’ is about looking, it's an increased awareness of  sounds and scents that I experience when I do it.


    And it was good to take that step out of, well - everything. We went to the botanical gardens with some friends and walked around the magic lanterns in the Chinese Garden. It was quiet, people were whispering, there was a sense of awe, and there was lot's of space to move around and experience the light and lanterns. Lovely. 


    I’ve decided to call Dr B's nurse, I'll ask about the biopsy, see if we need to do anything about pushing it forward and I'll ask/tell her about bringing my husband to the consult next Tuesday.  She is supposed to be the one who stick handles my file through all the members of the team. I have her number on all my appointment notices. I'll just call her later on this morning. 

    Decided. 

    And then let it go. 

    I actually had a moment of boredom yesterday. What do I do now? What can I do? There is nothing more I can do now. I just have to wait.  I've done my bit of work, I've done my bit of spoil me, and really there is only so many hair cuts and manicures you can do. It was lucky that the weather was nice and that the walk took me two hours and filled that part of the day. I think I am done with the half-assed, don't do much days already. 

    I have nothing, absolutely nothing on the schedule for today. 

    There are always things I could be doing, around the house, for the office. These are the kinds of jobs that are never really done. 

    I'm cutting back on coffee this week too, I need to be in better shape for these tests. I don't want coffee headaches when I have to fast for these tests. My coffee consumption has drifted up in the past six months. I'm cutting back to three cups in the morning and that's it. Stop then. And gradually get it down to two cups. Once I'm at two cups then I know I can do whatever fasting that I might need to do in the foreseeable future without getting a headache. 

    At all times, it felt crucial to me that I make a conscious commitment to survival. 

    Audre Lorde, The Cancer Journals,1980

    It's a beautiful day.  And it’s all mine! 

    I have tomorrow too. Tomorrow laundry is on my list. And that's all. 

    Thursday is ct scan day. But I'm done by 10:30 or so, so it's only half a day. I'm giving myself a whole day off. Just in case it feels like I just need to sit on the couch and be nice to me after that test is done. 


  • 10 Sep 2018 6:31 AM | Contact Me (Administrator)


    Even if the doctor is pissed at me. I will not go into any kind treatment until they have a biopsy and a real, and good report from that. Period. No starting treatment on a guess. Period. Cancer treatment itself is not harmless. I will take the risk on the wait of a few days or weeks if necessary. 


    But what kind of role model am I, or are multicellular organisms generally, for putting the common good above mad anarchistic individual ambition? 

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

    Monday morning, it's bright and sunny, but there is the fall chill in the air at 6:45 and it's not humid. Yay! My kind of weather. 

    After the weekend reprieve today is the day I'm back into it on the medical front. I'm at their mercy now schedule wise. I have one test scheduled for later this week. Two tests and a consult with the oncologist next week. Still no sign of the biopsy. And that's the big one. I have firmly decided that no matter how alarming they act I will not start treatment until they have a biopsy result. Period. It won't happen. 

    I talked to my old old friend L yesterday. I remember everything he went through last year, two painful and debilitating different kinds of cancer treatments that didn't do anything at all. Live TB was the first one. The technicians had to wear hazmat suits to administer the treatment. L said, 'imagine what it feels like to see that, and know they are putting that stuff right into your body.” There were a lot of rules he had to follow at home so the live TB didn't get out of his body and out into the world. Then when that didn't work, the entire course of treatment made no difference at all. Then he went through some horrible rounds of chemotherapy, still suffering from the original symptoms that sent him to the doctor in the first place, with the additional symptoms of chemotherapy on top of that.  After a few rounds he said, 'no, my body can't take this, I can't take it anymore.' And he put a stop to all treatment. All of this was done on the basis of a pathology report that found some abnormal cells, but no cancer. He did not have cancer. The treatments did a lot of damage, but did nothing to address his symptoms. Not cancer. He never had cancer in the first place. They didn’t find out it wasn’t actually cancer until they finally sent him to the specialist in the city. I won't go through something like that. That is not even common sense. I'm no doctor, but that's not even common sense. And L noticed the same thing that I've seen, once they start a course of treatment they don't look back. If something doesn’t work they don’t think their diagnosis was wrong, just that the treatment plan was wrong. They don't even look for new evidence. So. Even if it is a few weeks difference. Even if it messes up my trip to Baltimore. Even if the doctor is pissed at me. I will not go into any kind treatment until they have a biopsy and a real, and good report from that. Period. No starting treatment on a guess. Period. Cancer treatment itself is not harmless. I will take the risk on the wait of a few days or weeks if necessary. 

    “We shall so poison the atmosphere of the first act that no one of decency shall want to see the play though to the end.” James Watson speaking about chemotherapy, 1977

    So that is done. That is a big, potential decision that is already made. I have already decided. I know what I will do. Worry about not having a biopsy at all, or in time and being pressured into starting some sort of treatment immediately was  some of the stress that I had about this whole biopsy issue. And now I'm more relaxed about it. If it takes longer, and if we don't have the results before Tuesday, then fine - we don't start treatment. 

    This is not my fault if the radiologist is so busy it can't happen in the time frame that the doctor set up to suit his schedule - and his sense of urgency about this. I've made up my mind about how to handle it.  That's decided and it's not such a point of stress for me anymore. And it may not even come to that, the biopsy may happen soon, the results may all be there on time. If they don't call me today then I'll check in with my main people and perhaps they can speed it up. I'll do my due diligence on this and that's all I can do. I don't run that hospital. I don't tell the doctors, or the radiologists what to do. 

    All the other tests will be done by then, except for the bone scan. They'll know if there are any other weird things lurking around here and there in my old body. And you know, there might be. I'm not young, I might have all kinds of lumps and bumps that need to be checked into that aren't cancer either. 

    And there I said it. The other thing that came into me yesterday is that this all some kind of big mistake and it's not cancer, just some kind of fatty, cyst thing, just a bunch of abnormal cells like L had, and it will be a big relief when the biopsy comes in. It will still need some kind of surgery solution, like the fatty cyst on my back that got infected, and was life threatening in it's own way, I could die quickly if it got into my blood stream, but it didn't require the radiation, or the serious chemistry that cancer requires. 

    So I started off sad and accepting, while I started off preparing myself mentally and emotionally for the worst, so when the doctor said 95% cancer, and started acting like it's the really bad one, I wasn't distraught. I was already ready for that. 

    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

    But now I'm coming back to a lesser position. Now I am thinking that maybe this is not so serious.  And that is what allowed me to step back and make that decision about the biopsy. I can't get caught up in their alarm. Do I feel that alarm. No. My body is not telling me that there is something seriously wrong here. Of course that's what cancer is by definition, your body not recognizing the cancer cells and getting rid of them. That is the nature of cancer - inherently. It won't feel wrong until organs start to not work properly on account of it. Even so I feel like even if this lump is big and growing that if it's a cancer it's a mom and brother type of  cancer. Not the aggressive gonna kill me if we didn't get on it last spring type of cancer. I may be wrong. But we have lot's of this slow growing cancer in our family. And none of us has had the fast will kill you in less than a year cancer. Except mom. And that one did go on hold for twenty-four years. So I still think slow cancer is more of a safe bet. And if not. It's still the bet that I'm taking. 


    Yesterday I got stuff done. Not housework but general, would like to do it things. I ordered prints of the picture of Moose's ashes going into Lake Superior. I ordered the abstract looking image. It looks like a nice abstract water and waves picture, if you didn't know there were ashes as well as sand in the waves that's what you would see. I will see goodbye to Moose when I look at that picture. I'm going to frame it and hang it here in my office. Part of the story. Feeling sad just mentioning it. I guess because this will be the last part, putting up that picture. Making a little thing of it. I won't do more of those Moose memorial things after this. 

    And I finished off the office finances. They're done. I'll get paid soon. And then we'll just have to see. We'll know in a couple of weeks just how much of a leave that I'll have to take, and we can arrange for that then. Not now. In the meantime I'll spend a bit of time getting things as organized as I can for a hand off of some sort. 

    This is what I risked my life for, those summer weeks with friends and family. Putting Moose's ashes in Lake Superior and saying goodbye to him. Being with my family. And bringing my granddaughter across the country, back to the city and making a better connection with her. Supporting her. My sister and niece here for a visit. That's why I didn't go running in to get that mammogram in June, that's why I didn't do it the day that the conference ended. Instead I did it the day after the summer ended. It was worth it. If it's bad cancer I think I would've died anyway. I don't think those few weeks would've made that much difference. And if it's not a bad one, or if it's even something else, then it doesn't matter, and those few weeks won't change much and they were so worth it. If I die, they are worth it. If I don't die they are worth it. It passed the Janice test of a plan that works for both scenarios; get hit by a bus tomorrow, or live until I'm 99 years old. 

    So, there I was yesterday, I dropped all the alarm about breast cancer and was back there with the photos of that time a month or so ago when I was ignoring it. I made that choice. And yesterday going through the pictures I was back in that choice. 

    Nineteenth-century doctors often linked cancer to civilization: cancer they imagined, was caused by the rush and whirl of modern life, which somehow incited pathological growth in the body. The link was correct, but the casualty was not: civilization did not cause cancer, but by extending life spans - civilization unveiled it. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    My time with my granddaughter. And a lot of it through her eyes. I was seeing the world through her eyes. She took pictures of things she wanted to buy, took pictures of them instead of buying them, a different, and new to me, way of bringing home things you think you want but don't really need. And pictures of me. This is the first of all these grandkid visits where there are pictures of me. She took pictures of me. And so I see myself in her story too. I was there. I was there with her. And she noticed it and appreciated it and took pictures to help her remember me too. She didn't want pictures of herself. But she did want pictures of me. So I will put pictures of me into her story the story I create out of the photos of our time together this summer. 

    This will be the first time I do that. I'll be in the story too. And I know that one day I'll be dead - no matter how it happens with this cancer thing - one day I'll be dead anyway, and she'll have the little keepsake. That's what I'm leaving my grandkids. Fridge magnets, photo albums of themselves and our times together, and viewmaster slides of our trips and times together. Calendars. That's what I'm leaving them. And the memories. A story of themselves. That's why I never really put me into all these keepsakes. But now I will. Now that I see my granddaughter taking pictures of me. Now that I see it will also be a way for them to remember me from before - before I got sick, before I got really old and feeble, before I had the massive heart attack and just dropped dead on the dance floor. Before whatever it is that I will die of. Before the car crash, the plane crash, the scuba accident. Before the end. 

    It does not matter whether this death comes next week or thirty years from now; this consciousness gives my life another breadth. 

    Audre Lorde, The Cancer Journals,1980

    I made cookies yesterday, peanut butter thumbprint cookies with homemade raspberry jam. They turned out pretty good for someone who hasn't been baking for a long time. And I got to put them in my glass doomed cookie/cake/pie keeper too. Protected from bugs and mice, but visible. And looking like they're in an old fashioned store. Cool. And I ate them too.  

    Today will probably be a fairly easy day, the biopsy might get scheduled today, but the biopsy itself probably won't happen today. I think today might be almost a day off from medical stuff. Another almost day off cancer.

    Next weekend might be my last weekend off. And then it's the trip to take care of grankids that's scheduled. The week after next is when we will start to know more. Tuesday Sept 18 at 1:00pm to be exact. Funny how life is so uncertain, with these weird little certainties built into it. 

    Today and tomorrow are supposed to be nice sunny days. Not too hot. It's a good day for a walk up the mountain. And what the heck, if I'm not doing the biopsy maybe tomorrow maybe I'll head off to the botanical gardens and just  have a nice walk around there, remembering all of the times that I've been there.  The magic lanterns. The wonder of them. The butterflies in the big greenhouse. The orchard greenhouse. The Japanese drums and bento box lunch. The lilac forest in full bloom. The mosaic sculptures. Simply walking around by myself, finding peace in those acres of gardens in the middle of the city. 

    One day at a time. Make a list and do it one day at a time. Can't make a bigger plans than that for the moment. Deciding when to tell my sons. Maybe next weekend? I still just want to wait for that biopsy. I want proof first. But that appointment may affect the trip. Right now it looks as if I can start off as planned, but that I might have to come home earlier. 

  • 9 Sep 2018 6:04 AM | Contact Me (Administrator)


     There is something about having beauty pain, harmless beauty pain that seems to go with medical pain. Getting my eyebrows done hurt worse that getting the blood test. I bet a facial will hurt worse than the ct scan. But it might be fun to do it anyway.



    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

    Sunday morning. I woke up chilled at 5:30 this morning and I'm curled up in my chair in my office right now. I love to be up with the dawn, I love the feeling of dawn coming over me. 

    Yesterday was a good, regular life day with a lot of distraction and no reason to think about cancer and medical worries. Housework all morning. My husband did the back balcony and the kitchen floor. 

    It's always nice to come home to a clean house on Saturday afternoon after my trip to the Y and my cheap version of a spa day; sauna, swim, whirlpool. 

    It was a quiet day at the Y, I had the sauna, all to myself, it was nice and hot and I had a good sweat. Then a lane to myself in the pool. I did my full regular swim; all the laps the full forty-five minutes. And I had the whirlpool to myself so I could really give my whole body a nice massage against the jets. You can't really do that if there are a lot of other women in the hot tub. But I was able to do my elbows, the bottoms of me feet - that feels so good! and twist around to even get the back of my neck without drowning myself. I started this routine to help my old joints recover from a full week exercise routine. Even though I didn't exercise much this past week I have been tense, stressed, so the massage felt really good. I will have to remember that, make sure I make a point of it - as we go through this whole medical adventure. Even if I can't swim, the sauna and whirlpool are still good ideas. And I guess if you can get in a whirlpool then you can swim too. I call my whole Saturday Y routine my 'homemade' spa. Affordable.


    I'm one of the regulars at the Y now. I remember from my first job working at the theatre selling popcorn how the staff sees a regular, how you stand out from the crowd in some way, and become part of the culture of the place. I like being a Saturday regular, it's nice when they just hand me my card before I tell them my name. Taking my granddaughter in as a guest - that's what made me into a regular. That's what made me stand out from all the other old ladies on a Saturday afternoon, at least with the young women who work the front desk. 

    It was nice to come home to a clean house and to my husband sleeping and happy on the couch. Just like the always times. Just like every other Saturday afternoon listening to the radio and sleeping. Missing Moose. I saw the empty Moose spot on the end of the couch too, but my husband was content, so perhaps he was feeling as if Moose was there with him. Half asleep, listening to the same old radio show as he dreamed. Maybe he was simply right back there, right back in time. It was good to see him relaxed and happy. Sleeping. 

    We went to a live music party in an old bank building last night. I got dressed up more than usual. Well I'm on this roll anyway. As part of my cancer fear response this week alone I got my hair cut, and my eyebrows done, and my toe nails painted red, and yesterday afternoon I gave myself a manicure too. So I was already tricked out. A bit of make up and contacts instead of glasses and wahoo, look at me all dressed up for a party. We went early because my filmmaker husband had offered to help out with the AV for the event. I did a good job chatting and socializing. I know enough about these people now to ask them questions about themselves and start the conversations. How are you enjoying retirement so far? Did you get your car fixed? What is happening with your mother? And they are happy to talk about themselves and I just need to let them run on. 

    With quick cosmetic reassurance, we are told that our feelings are not important, our appearance is all, the sum total of self. 

    Audre Lorde, The Cancer Journals,1980

    I got a lot of compliments on my new short haircut. Nobody mentioned the glasses. They didn't see the lack of glasses. They just saw that I looked better and attributed it all to the haircut. So I told hairdresser stories. I do have an interesting hairdresser. He thinks of himself as a hair artist. If I try to ask for a certain kind of a cut, he will consider it for about half a minute and then just say - no. He cuts it the way he wants because he is a hair artist and he's known me for twenty years. He knows I won't fuss with my hair, and that I can get too busy and forget to even get it cut until it gets embarassing for him to see me walking around the neighbourhood looking homeless. So, he cuts it the way he wants, so I don't embarass him when I'm out in public.  Haircuts. Grandchildren. What I did on my summer holidays, who is still on holidays. Those were conversations. It was a cancer free zone. 

    It is a revealing commentary to note that throughout the annals of history women have never outlived their vanity. Cosmetic considerations and false modesty have hindered the early diagnosis and timely treatment of breast cancer from the dawn of humanity until today. 

    Dr. Edward Lewison, Breast Cancer and Its Diagnosis and Treatment, 1955

    I did not talk to my kids yesterday. And I didn't talk to my good buddy L either. I gave myself a day off from cancer. I’m not ready to tell them. It was a day when I found it easier to just be a regular at the pool, let my husband sleep on the couch, and talk about meaningless stuff with near strangers all evening. 

    Today I'm going to finish off the office finances. And I'll put photos on a CD for my granddaughter, and I'll order a print of Moose's ashes going into Lake Superior I have a nice abstract shot that I like for that. Perhaps I'll play wow with my sons. Perhaps I'll talk to L today. 

    Next week I have some medical appointments scheduled already. Next week the big one will have to be the biopsy. That's the one that preys on my mind. And next week I'll do the same thing as last week. I'll make my own little list of to dos. I will do some me-to-dos, some house-to-dos, and some work-to-dos. Just a bit of each thing, each week. I might even have a facial. There is something about having beauty pain, harmless beauty pain that seems to go with medical pain. Getting my eyebrows done hurt worse that getting the blood test. I bet a facial will hurt worse than the ct scan. But it might be fun to do it anyway. There are only so many times I can get my haircut. Maybe an official manicure. Maybe I'll do that next instead of a facial. 

    Yesterday I wore my lucky granddaughter and me jacket. We both have different versions of the same jacket. And my lucky hamburger necklace made by my grandson. And my lucky opal ring from my husband. And my lucky jade ring from mom and her breast cancer days. Her survivor ring. I've been wearing it all along since she died. But now I look at it more often. 

    And I have my jokes about be careful what you wish for, I always wanted killer boobs, but I didn't mean it so literally. 





  • 8 Sep 2018 6:08 AM | Contact Me (Administrator)


    That's the way I'm handling it, turning the fear of dying into all these other smaller, more immediate and practical problems. Solve them so I can be in better shape to face the fear of dying. Or even just the fear of being sick, disabled, and unable for a long time. 


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

    Audre Lorde, The Cancer Journals,1980

    I woke up around 3 a.m. I was having a nice dream, but then I woke up and worried about not getting the biopsy done, it stressed me, that biopsy. I no longer have that happy feeling of relief - even though they think it's cancer and maybe bad cancer - at least I'm not alone and worried anymore. I no longer have that feeling. I'm worried again on account of this business of no biopsy, and that woman behind that desk being a ditz, and saying that even if it's urgent the soonest anything would happen is three weeks. And the whole empty weirdness of the biopsy, ultrasound floor. All this when everything is scheduled to be done and together in less than two weeks. I feel stressed as if it would be my fault if the biopsy, the key thing needed for any kind of diagnosis and treatment plan is not done, or done in time to get the results in. I was stressed. I hung onto my sleeping husband. It took me a while to fall asleep again. When we both woke up it was  late in the morning. My husband had pulled all the sheets off his side of the bed in the night, in his sleep. Poor guy. This has been a stress on him too. 

    But now it is morning. Now it is the light of day. And I’m fully awake and I know it's not my fault. I know that I'll do a follow up call if I don't hear from biopsy world on Monday. I know that my ct scan on Thursday will be enough time for them to have a report in time for my appointment with the doctor on the following Tuesday, so I think there is also still time to have results if they do the biopsy any time during this coming week. There is no reason to wake up in the middle of the night in panic and guilty stress. 

    My friend P said she quit being such a fitness person after she got breast cancer fifteen years ago. She felt like her body had betrayed her. That she'd done all the right things; she was so fit she was teaching aerobics classes, eating health food. Living clean. And then she got cancer and felt that she'd done everything right and her body betrayed her. She never felt the same way about fitness and eating right again. She was young. She got cancer young. I am not young. I am in the more typical cancer age range now for sure. Over fifty, the warranty ran out on this old body a few years back. And I am in the age range where we start dying from other things besides cancer. A slightly younger cousin died suddenly, in his sleep of a massive heart attack. It's not just cancer that might kill you at this age. It's the heart attack, it's the stroke too. 

    How do I feel about my body? I don't feel betrayed. I feel like it's aging  and this is part of the aging process, like getting grey hair. Once you pass fifty and sixty  you are more likely to get cancer, strokes, heart attacks. That's just what the story is like between here and eighty or ninety. And then if you do keep going far past eighty you get frail, then it's finally going to be some kind of virus, infection in your lungs and you'll be really frail and finally not able to even breathe. There is no way to keep going passed eighty without at least one, and maybe even several of these things happening to you. It can be cancer, and then a stroke later on if you survive the cancer, and then frailty if you survive the stroke too. I read that there are three common ways to die in this modern age; heart/stroke, cancer, frailty. And they  talked about the pattern of each one. But they didn't mention that you could end up going through all three of them. There is no fair and honest power out there keeping tabs, keeping score and making sure that nobody gets more than their fair share of suffering. 

    Cancer is an age-related disease- sometimes exponentially so. The risk of breast cancer for instance, is about 1 in 400 for a thirty-year-old woman and increases to 1 in 9 for a seventy-year old. In most ancient societies people didn’t live long enough to get cancer.  

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    Getting cancer now does not mean that I won't have a stroke later on. And it doesn't mean that I won't get dementia later on either. Those are my two big fears. Cancer is bad, but not as bad as those two. Those are the two that I really don't want to have. Brain stuff. Killer boobs are not as bad as that. I'm prepared to give up my boobs if I have to. I don't want to give up my brain. 

    Yesterday was a pretty good day. Just one little hiccup that let me how fragile my grip oneself control is these days. I set out each day with a little to do list. I make it thoughtfully and carefully. These are some things that I need to do, I will feel good about myself if I can accomplish these x number of things today. And then I put in a couple of 'me' things, indulge me things like a nap, or a pedicure. And then I add some preparing for this unknown future things like make some food for the freezer, find out about my disability insurance. And then, whatever medical thing I have to do. That gets top billing and I stop everything else when that comes up. 

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

    Audre Lorde, The Cancer Journals,1980

    Yesterday there was no medical thing. No phone calls. No thing to do. No  that's not true. Yesterday there was a phone call letting me know when to go in for the ct scan and how to prep for it. I guess the blood tests were done and I'm not allergic to any of the dyes involved. So there was that. I felt good. 

    But no calls came in about the biopsy. Nothing. 

    Yesterday I gave myself a bit more work to do. I did some office work and scheduling. And I sat down and did the finances, wrote the cheques, paid the bills, wrote out my paycheque. It might be my last for a while. I also got going on some legal obligations for the organization. My Executive Director job. 

    The new fridge came yesterday. I helped take the food out of the old fridge and pack it up. I helped clean up the floor behind the old fridge. And then I got into the finances. Then the new fridge got delivered. Right when I was in the middle of having the financial paperwork spread out all around me on my desk. My husband walked into my office and said he would leave it to me to put everything back into the new fridge. I had to do it now. Food was going bad.

    I had a moment of near tears. I almost lost it. I've been holding it together carefully but I almost lost it over that unplanned job. I've been holding it together because I had control over my time. All the time that isn't given to medical stuff is 'my' time. I need to have that control over the non-medical time. I have this whole little mental list of things I need to do, how to handle it and that food into the fridge issue just threw me off and put me off. I did not put in the food in the fridge. I continued to work on the cheques. And then I went to the post office in the terrible heat and I mailed them. By the time I got back my husband had put most of the food back in the fridge. I did help him level the new fridge. 

    And I put all the fridge magnets on myself. He was instantly happier when the magnets covered the new fridge. We have a lot of magnets. I collect them on our travels because they are cheap and easy to collect. Our fridge is colourful and uniquely us, with our story written in magnets all over it. It's okay now. We are okay. 


    But I didn't finish up the rest of my office work. I had a text chat with my granddaughter instead. With teenager you drop everything and go with the moment when they want to talk.  She was very chatty. I reminded myself not to be too "knowing" but to ask the right questions and let her work out the answers herself. And her pattern was to give me an extreme answer; "I hate my language arts class and everyone in it." And then I let her work her own way around to saying, "It's only the first week, probably not everybody thinks the same way, other kids might come up and support my ideas later on, after they have a chance to think about it. I might not hate everybody in that class, I don't even know everybody in that class yet."

     I only need to express interest. I don't need to tell her,  she needs to find out and figure it out for herself. My job is to listen and hear, ask those questions that help her figure it out for herself. 

    Yes, for me the idea that I might be dying did sit behind that conversation. As it has sat behind this whole summer trip with my granddaughter. How can I help her become the best woman that she can be? 

    It takes time. 

    I hope I have enough time.  

    Sometimes fear stalks me like another malignancy, sapping energy and power and attention from my work.

    Audre Lorde, The Cancer Journals,1980

    And I made my list for today, and for the weekend. Regular housework this morning. The windows are my fall project. I like to get them done before the weather turns. But there is lot's of time for that. Maybe. Should probably try to do them next week if I can. Because here is the thing, if I'm laid up for a while then I'll be looking out those dirty windows with nothing better to do, feeling frustrated that I'm not able to clean them. 

    Then it's off to the pool for a swim. My weekly swim routine. It might be my last for a while. But I think that I will probably have next weekend for swimming too.

    And then, get home relax, knit, read my book. The usual Saturday afternoon stuff. Saturday evening movie on TV with my husband. 


    Tomorrow. I have a whole day tomorrow and I wasn't sure what to do with it. I can finish off the office stuff. And I can play wow with my kids. Or I can do the trip pictures. That's my project for tomorrow. A good Sunday project. A while I'm feeling good project to get out of the way. It's meaningful to me and will make me feel good to accomplish it. I want to get a good print out of the picture of Moose's ashes going into Lake Superior. And I want to make CDs with all of the pictures my granddaughter took on my camera, mail them to her on Monday. That will be a full day. But it'll be good to have that done. So that's my tomorrow. It'll be a nice day, spending time seeing the world through her eyes. 

    Monday I'll probably start up on the medical stuff again. I am hoping that Monday will be booking the biopsy and getting the lowdown on that test. A biopsy and an ultra sound. Or it will be me calling them - her - asking 'what's going on?' The balance between being proactive and pissing 'them' off.

    I'll start to put together an office 'hand-off' package. Get it ready. I may not have to do it, it might be fairly minor in the end what happens here. It might be my mother's cancer and that didn't kill her, she lived another fifteen years after her Halsted mastectomy and radiation. I'd be seventy-seven if it happens that way to me. 

    Halstad acknowledged the ‘physical penalty’ of his operation; the mammoth mastectomies permanently disfigured the bodies of his patients. With the pectorals major cut off, the shoulders caved inward as if in a perpetual shrug, making it impossible to move the arm forward or sideways. Removing the lymph nodes under the armpit often disrupted the flow of lymph, causing the arm to swell up with accumulated fluid like an elephants leg. 

    Siddhartha Mukherjee, The Emperor of All Maladies, 2010

    My mother died at 64, my father died at 64. I knew these years approaching 64 would be like falling off a cliff for me. I know that the approach and getting past that line of being 64 would be a thing. It is a thing.

    So that's where I am. I am trying to maintain my equilibrium here. I am maintaining it by having this crafted life of things to do, ways to keep busy that aren't just restless random busy-ness. Meaningful, thought-out things to accomplish each day. And also just stopping and remembering to appreciate not being in pain, being alive, and comfortable. Healthy? Feeling healthy and pain free. Living these moments of simply feeling like that. If I am nice to myself and treat myself kindly, then I'm fine. If I push myself, or get pushed too much, then I'm fragile and start to lose it. So be kind. Just be kind to myself for now, as we go through this uncertain part. 

    It will end, in theory, next Tuesday. It will end when all the information from all these tests comes in and we sit down with the doctor and know what is, and what the plan is to deal with it. Then it will be something different. My whole job will be something different. But I don't know what that will be yet. 

    I can imagine two things. 

    One is that it's a slow cancer, like mom had, and perhaps even a targetable one. So I'll get targeted treatment for it. I may not even get surgery. I may not even get whole body chemo. That's probably the very best I can hope for. 

    The other is that it's a deadly, super aggressive cancer and it's started to spread. That will require at least one and maybe two surgeries, and big chemo, and big radiation . I'll be basically knocked out of commission for the next seven months. And then there will be the reprieve while we wait and see if it worked. 

    Those are what I think are the two most likely extremes. And then it's probably going to be something in the middle. 

    Either way. I am going to have to make some real, bigger than my daily to do list decisions about the next part of my life.

    But sometimes it comes into my head, like right now, what would you really give?

    Audre Lorde, The Cancer Journals,1980

    In the meantime. Let's do a bit of housework. Let's head off for a nice swim at the pool. I remember how I used to swim laps the first winter I started working for this Executive Director job, how I used to list off words from letters of the alphabet with each stroke to keep me calmed and focused. Fantastic/stroke, Future/stroke, Finance/stroke. I was in training for the Alzheimer’s test. And that swim technique worked really well to manage the crazy stress of that first year when I was running blindfolded on shifting sand, knowing that people were also taking pot shots at me, but not knowing who, or why, or what damage the shots might do. This job was super stressful at the beginning. Equally if not more stressful than this cancer thing, even though one of the things I said to myself back then was you won't die. No matter how badly this goes, you won't die from it. 

    I could die from this. 

    But I won't be socially humiliated and devalued. Not like in the old days, not in this Pink Ribbon for breast cancer era. 

    This gets back to the thing I discovered on my first plane trip. In the moment -the fear of throwing up in public is greater than the fear of dying in a plane crash. For me anyway. It was a small plane and a turbulent flight. At first I was afraid that we'd crash and that I'd die. Then as the turbulence got worse and I started to feel sick without knowing that there was a sick bag in the pocket in front of me, but knowing that the bathroom was always full and also that I wouldn't be able to unbuckle my seat, get past the guy next to me and into the bathroom in time anyway. Then it was all about trying not to barf on him, on the people in front of me, on myself. I forgot all about the dying in a plane crash aspect of that turbulence. I was only afraid of throwing up on people, in public. 

    I guess partly that's how I'm managing my fear now. I'm turning it into practicalities. For the moment. I'm turning it into ways of being on top of things. Getting my insurance organized. Getting the pantry cleaned up. Getting the office files organized. Being on top of it what I am doing day to day, hour to hour. That's the way I'm handling it, turning the fear of dying into all these other smaller, more immediate and practical problems. Solve them so I can be in better shape to face the fear of dying. Or even just the fear of being sick, disabled, and unable for a long time. It could be seven months of being not able, disabled. 

    There must be some way to integrate death into living, neither ignoring it nor giving in to it. 

    Audre Lorde, The Cancer Journals,1980

    It will be like when my back used to go out, and I'd recover a bit and then it went out again. It will be like what my son went through with his near death, big surgery and recovery. It will be like what my brother went through with his cancer. It will be a whole different thing from this suspense and waiting. Or not. A somewhat different thing. 

    In the meantime. I have this day. I have this day that can be just like every other Saturday of my routine life. And that's the way I plan to spend it. Soothing and in denial. There is no reason, for the moment, not to spend this day, this way. 


        


  • 7 Sep 2018 6:15 AM | Contact Me (Administrator)


    She was lecturing me, waving the papers around in my face, papers flying every which way, explaining that they had to be all together and in order, before she could even begin to put me into her system for scheduling. 



    They simply filed them among the other papers and pointed out that for the time being the observation and interrogation of the accused were more important than any formal petition.

    Franz Kafka, The Trial, 1925

    Friday morning. This is the end of my first week of my new medical lifestyle. It is a bit weird how this medical life is basically so nine to five. All the routine tests, they're all booked in a nine to five, Monday to Friday pattern. So, even though I have cancer (we think, we don't know that yet) even though I might be dying from it even as I sit here (we think, we don't know that yet) I still get weekends off. How bizarre.

    I'm used to working on weekends, not always, but often. That is the nature of my work. And I'm used to working on evenings and weekends for quite small reasons; a little shoot, traveling for shoots or meetings, or it's just quieter and less phone call interruptions to do the organization's finances on the weekend, board members have time for their volunteer work on Sundays and so that's when they email me. That's when I work. That's how I work. It's weird to have a life where weekends are interrupted for trivial reasons and then all of a sudden I get weekends off when we’re dealing with a big and scary thing like cancer. It all just stops on Friday and doesn't start again until Monday. Very strange. 

    And don't we all wish that were really true. Get two days off every week no matter what, two days off from being sick, two days off from dying. Everybody involved could use a break like that. I should put in a memo to the cancer patients' union and see what they think about carrying this idea of weekends off for all forward to the 'powers that be'. 

    That is what it what it is like for 'our' professionals. They get their days off. Even if we don't.

    Yesterday I talked to the woman who coordinates all the 'client' tests. Does that mean I'm a client now, not a patient? Don't I wish. The name change implies that I have somehow made a choice here, and it's a choice that could be revised if I don't like the way I'm being treated. 'Thank you for choosing breast cancer. Please take all your belongings with you when you shuffle off this mortal coil.' 

    Anyways, she called because I brought my collected images home with me when I left the hospital yesterday and now she wants them back. So I interrupted my plan for the day, hopped back on the bus and went back to the hospital, got new requisition paper work for all these tests, and then I walked the whole stack of papers all around that maze of a building. 

    Dropping off files at one location - to the woman who will book my appointment with the oncologist as soon as they have the biopsy results. Stopped for a blood test down a different hallway so they can check for allergies before they do the ct scan; and that woman got the vein in one jab - that's only the second time in my entire life that's happened. I was thrilled! Going smoothly! Then up to the 10th floor with the whole file of images and the requisition to book the biopsy. And that's where it all fell apart.

    Right off the bat the woman at that desk said, 'nothing will happen today, you know that don't you? We have a three week waiting period for anything that's urgent, and if it's not urgent, then who knows when you'll get in.' She frowned to show how much I interrupted her busy day even though there wasn't one single other person in the room or waiting area. 'Give me your images, I have to make sure they are all there before you leave. Wait over there.' She pointed at a set of empty chairs at the far end of the empty hallway. I obediently walked past all the intervening empty chairs and took my place as far away from her as she could get me.  

    What a strange feeling. The two of us were alone high up on the 10th floor. The view of the city from the window was amazing. The paint job and furniture were brand new and hardly used. And I was all alone in this space with comfy chairs for dozens of women. Just me and that young woman behind a desk so big I could not see her head from where I sat. But I could hear her, after ten minutes she yelled that the MRI CD was missing. She stood up, 'You.' and pointed as if there was anyone else in the room, 'Come here.' When I got there she waved the MRI report in my face. 'This CD is missing, I have everything but this CD'. 

    I haven't felt like that since elementary school. I had a small panic because I knew all the trouble I went through; half a day of my life, line ups and mazes in another hospital, and $10 bucks to get that CD. I knew it was in the folder when I came in. I remembered from elementary school how little being in the right matters when you are in one of those across-the-desk confrontations with someone in authority. She was lecturing me, waving the papers around in my face, explaining, papers flying everywhere, that they had to be all together and in order, before she could even put me into her system for scheduling. 

    He gives the clients all the information they need, and as our procedure is not very well known among the populace, a great deal of information is asked for. 

    Franz Kafka, The Trial, 1925

    And there it was. The CD had been sitting under one of the papers that she waved in my face. At least she admitted her fault - specifically, in that one instance. And then she went on to complain that the files weren't all from the same clinic and the mammograms weren't in a regular timely order. I offered to run around the city some more; and get stuff, more stuff, any stuff, any kind of CD or piece of paper, whatever she needed and bring it back to her. That day. Right then. Just give me the list. And I think that surprised her. She said, 'No, you don't need to do that. I'll call them. They can give it to me over the phone. Then, and only then, when all the papers are here in the proper order will the radiologist look at everything and decide what needs to be done, how he will do it, and when.'

    She will call me and let me know. 

    K. Turned toward the stairs to make his way up to the Court of Inquiry, but then came to a standstill again, for in addition to this staircase he could in the courtyard see three other separate flights of stairs and besides these a little passage at the other end which seemed to lead into a second courtyard. He was annoyed that he had not been given more definite information about the room. These people showed a strange negligence or indifference in their treatment of him, and he intended to tell them so very positively and clearly. 

    Franz Kafka, The Trial, 1925

    So, it wasn't great up there on the 10th floor. And I'm not comfortable with the weird vibe of that place. But I think she came around to actually seeing me as a person for a minute, and will do some things on her own, and hopefully the biopsy is back on track. But I can see that I will also have to pay extra attention to this part of the process. Something is not right about that place. If she doesn't call me today, or Monday then I will have to get one or two of the scheduling women from my 'oncology' team on it. For me the biopsy is the key thing, everything else hangs off of that. I won't let them start any kind of treatment without that information. And that is not a confrontation I want to have with this doctor that I like. So that's the priority now. Get that biopsy done so it's not an issue.

    This medical life has turned into a management job on my part. It's just like any other management job, just like running an non-profit organization, or a documentary film shoot, or the training department. It's basically dealing with staff and getting them to do the things they need to do in a timely manner. And I'm also used to staff who are volunteers and don't have to do anything if they don't feel like it - that's even trickier. I think I can do this. I think I can do this part of the medical life that is starting up around me. 

    I also did my own to do list yesterday. Some office emails, trip to the post office, pick up a few groceries; coffee, milk, butter, dental floss. I'm learning the transit route and schedule to get back and forth to the hospital.  

    When I got home my husband was still off on a film shoot and I had the whole apartment to myself - and quiet. I'm in a self-indulging mood. I appreciate every moment that I have to myself and don't feel any pain, or sickness. The basic things. Breathing clean fall air, no pain, the seasons. 


     I knit for a bit. I read my book, later on I gave myself a little pedicure and painted my toe nails dark red. The same dark red nail polish that my granddaughter used when she was here. It was a little moment of feeling her with me. 

    I decided to get going on my to do list. I called my old friend D. I called to ask her husband, my insurance broker, about my disability insurance. It was just something on my to do list. Sort out the disability insurance before the treatments start. Cross that off my list. That's all it was. It meant that I had to tell her about the tests, and possibility of treatments and disability. It sounded like she had a cold. First she said her husband was in the bathroom, and then his phone was ringing, and then she said he had an appointment coming up. Then she started asking me wildly lame questions about scuba holidays, winter trips coming up, and all the while she was sniffling. I thought it must be a terrible cold. I tried to ask her how she was doing, and she just said, 'Oh you know how I am.' It was only after we hung up, she said her husband would look into and get back to me, that I realized that she'd been crying the whole time. Yikes. How stupid could I be? But I didn't call back. I left her with her husband. I wasn't ready emotionally to dive back into that situation and call her back. Not right then.

    Yesterday I let the cat out of the bag to two people. My brother who's been through two bouts of cancer himself was really resilient. I told him I was having a cat scan, they found stuff on a mammogram that they want to check out, they don't know anything yet, but it looks suspicious and with our family history they decided to do a complete workup, the whole fleet of tests just to be on the safe side, and also to have a baseline if it turns out that it's nothing. He was fine with that. He knows that this is a long process with a lot of twists and turns on the way. Breast cancer is not so life threatening, and people can live without their breasts better than without their lungs or their colons. So, it registered. And it won't be such a shock if I tell him that yes, it was cancer. Three people know so far.  My husband, my brother and my old friend D. I didn't do such a good job with D. I will have to think this through, you can't just call people out of the blue and dump this kind of news on them without any kind of warning.  

    So far my schedule is still clear for most of the grandkids trip. I have a bone scan that will interfere with the return trip. But I can always either put that one off, or change that part of my itinerary. I'm not going to make any itinerary changes until after my Tuesday meeting with the doctor. That's when I'll really know what's going on, what's going to happen and how it will happen. Save all change ideas until then. 

    D’s husband did call back and I did find out about my disability insurance. It's not a lot, but it's enough for me to survive. We won't start the process until we have the doctors letter confirming the diagnosis. He was calm and steady as we talked. Reasonable. 


    So here we go, I'm expecting today to be a fairly normal work day, I might get a phone call about the biopsy, I hope I get a phone call about the biopsy. Then probably I'll have a weekend off the medical stuff - a weekend of pretending we have our usual normal life. And I'll enjoy that, then next week I expect intense testing and meetings and all of that. Medical life, next week and the week after that too. 

    It's a bad boob. I can see that myself, and it's still on the move getting badder and badder. I don't think it's just my imagination. But that doesn't necessarily mean that it's spreading throughout my body setting up little colonies that are going to start growing quickly as soon as they get themselves established, anywhere and everywhere. It could still just be a bad boob growing away in it's own space, getting bigger faster now, but not moving out into the rest of my body. Two different things. Maybe. My brother's colon cancer was a big sucker. And it was okay. Sort of. Nothing to do but go through all the tests. Mainly the biopsy. Hurry up and wait. I know this life, this is my filmmaker work life. We joke about it all the time. Hurry up and wait. Turns out that it's the cancer diagnosis life too. I know it and get it.  

    It's just this nine to five side of it, with weekends off that is so strange for me to understand. 


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