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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


  • 26 May 2019 6:21 AM | Contact Me (Administrator)

    This is the way I plan my new seasonal wardrobe. No bra. Soft cotton camisole. Think of it as a big medical dressing. I will have full mobility by the time radiation starts. The issue will be skin - texture and rubbing. And heat because it will be summer. So what I need is light camisoles, one for each day, and a spare so I can do laundry. A clean fresh one for each day in case of blisters and oozing. Lots of camisoles so I don't have to sit around stuck in the apartment - naked and miserable with nothing to wear literally. Plus an additional top that covers me up to my collar bone so the sun cannot touch the radiated skin when I go outside. A whole new summer wardrobe for me. I’m worth it. 

    Sunday morning.

    Yesterday I went for my mountain walk. The new usual route, no further because I have been feeling crummy lately. I did my two cycles of range of motion exercises one in the morning before my bath and one in the evening. I had a twenty minute nap, woke up a bit and fell asleep again for another twenty minute nap while my husband was off swimming. I had an hour long Skype with my old buddies L&R, they provided lot's of laughter and humour. It was beautiful and sunny, and they posed themselves so I could see Mount Rundle in the background behind them on a blue sky Banff day. Lovely of them. And I had a Facebook chat with oldest, best friend K. Her house blew up before Christmas. She told me about her rebuilding project. I think she was shocked to see me. I don't think we've Facetimed for a long time and I have deteriorated quite a bit since then, even if I am on the way back now. 

     It was an okay day. George brought me rhubarb from the market. I'll make my annual spring rhubarb & strawberry cake today, and we can send the some of it down to the office tomorrow. With some whipped cream. I have a lot of love and support around me. And I laughed. And I got up and dressed and did some exercise, and kept up with range of motion. 

    But I still felt down. I have been feeling down and not right for these past few days, ever since I got back from the real up of seeing the radiologists. The next day I was down and I've been essentially down ever since. And although I should be feeling better, stronger and happier every day, I'm not. Why? 

    Is it physical? Is this new exercise regime stirring up some of the chemo and actually making me feel a bit worse? Am I fighting off a plain old cold or something and just honestly don't feel that great and it will go away by itself? Perhaps even a little 'flare up' of the allergic reaction to the Taxol? Dr. M explained to his student that there are two forms the allergic reaction can take. He said it affects X type of tissues anywhere in the body, so it could be a skin reaction like I described and that would be plaques on the skin that often turn itchy, or it can affect the Z tissues in the airways and that is a medical emergency because if that happens then the person can't breath. I jumped in and said I was glad mine was the skin reaction version if I had to have reaction. But I wish the nurses in the chemo room  had known this. It would've saved me a lot of grief. Instead they told me it could not possibly be an allergic reaction to the chemo if I wasn't the breathing reaction. They thought it might be a reaction to the steroids and just ignored it. I suffered more than I needed to suffer on account of that. Ignorant nurses with no time. That has been the main, consistent problem with my treatment so far. The nurses aren't properly trained, they aren't staying up to date with the treatments (though Taxol has been around for a long time, they should really have all known this) and they don't have enough time with the patients. They are seriously overworked and burnt out. I do not blame them for problem. 

    The reason I even have to ask myself if it's physical is because I remember one time when I thought I was too depressed and miserable to even get out of bed, and then I realized it was the flu, and I wasn't depressed at all. I just had a virus that would go away by itself after a few days. It had been that long since I'd been plain old fashioned physically sick that I didn't recognize it. So. It could be merely physical. 

    But it does seem to be an issue of 'not caring'. I don't feel motivated. I did not water my plants yesterday. I am letting my bottle garden die from neglect. I did not vacuum my office rug either. I have not thought about replacing the dying daffodils and crocus pots in my window boxes. I don't care. I think about how I went through all that effort to get the bottle garden last January when I was so sick with chemo and I'm amazed at myself. Why did I bother? Why did I rouse myself and go through all that trouble and spend all that money? Was I crazy? I can't imagine doing it now, and really I am in much better shape now, physically. I think I am. Perhaps I am too ground down now. I was in worse shape then, but it hadn't been so long. That was only the first phase. One of four phases of treatment. Now I am recovering from phase three. The damage has been accumulating. I am still recovery from chemo, and still recovery from surgery. I am not well yet. And I still have radiation to get through. Another mystery. It might not be so bad. Or it might be terrible. And I am in the pause of waiting to find out the pathology from the surgery. And the CT scan which I haven't even had yet. I guess in some ways it's only natural that I would feel down now. 

    But also it seems like it should be a happy break time. I should enjoy this nice long break. I haven't had a break like this since last October. But I'm not well. It's not like I'm enjoying good health. I'm still recovering from everything, still healing, still getting my range of motion back, still getting my strength back, still growing hair everywhere. I'm not healthy. And it's not the end, it's like a hump day on the treatment schedule. This is that last three quarters of the way through stage where it feels endless. This is like the third round of AC, enough to feel really miserable and not even the last one yet. I am allowed to feel down even as I am getting this break. 

    I am knitting away on the sweater and am almost up to doing the cap on the first sleeve. Yes I will get it done. And I am reading. I am doing that. 

    And I am thinking about buying myself some clothes for the radiation. I know that it was really smart of me to buy clothes for the chemo, clothes for fall to winter to spring, clothes to get you through nausea, that you could nap in and then get up and walk outside without having to change. Comfortable clothes. 

    My surgery bra's and wardrobe idea was a fail. The bras were too tight, better not to wear anything, I didn't know that then. Luckily I have a few soft shirts and tanks that got me through. Dr. M re-enforced that. A soft cotton camisole, wear that. Think of it as a big dressing. I will have mobility by then to get in and out of pull over your head tops. The issue will be skin, texture and rubbing. And heat. So what I need is light camisoles, one for each day, and a spare so I can do laundry. A clean fresh one for each day in case of blisters and oozing. And maybe even more  than that so I don't have to sit around naked and miserable. Then really light things to put over top the camisole so I can go outside. Shirts, cardigans, light jackets, shorts, light loose capris to wear underneath. It will be like the chemo clothes, worth it in the fact that it keeps me getting out and about, feeling good about myself. I a down because I gained so much weight. It’s not me anymore. The doctors and physiotherapy people predicted I would gain the usual amount of weight, around twenty pounds. And they were right. And they have also predicted that this weight will go away by itself, it's caused by the steroids. It will take a while, six months to a year, but it will go away by itself, and there isn't that much you can do to speed it up in the meantime. I am at least exercising better. In the meantime it feels bad, it's discouraging after I just finished spending a full year working so hard to lose weight, successfully. The year before I was diagnosed. These last couple of years have really had their ups and downs weight wise.  

    There is nothing short term I can do about this. I can see where I will join the weight loss program at the Wellness Centre, and that will be a good weight loss boost. But not now. Not while I'm still in active treatment. I have my hands full enough with the support group, and the physiotherapy and tests, and upcoming radiation - daily for four to six weeks. That's enough. If I can try not to gain more weight then that's all I ask of myself at the moment. But I do want to feel good about me, and good about life. 

    I am failing right now. Perhaps I should push myself to accomplish more, at least a bit more every day. I'll feel better. It's a bit like the exercise thing, it's hard to get yourself started - but you know how much better you'll feel for doing it, so it's worth it. Push myself a bit more on the getting things done part of my day. Give myself smaller to do lists maybe, so they are more doable. And give myself a break too. Adding an hour of exercise a day does almost cut in half my two hours of good energy time. Allow for that too. It's a priority now. And getting more serious about the naps. That too. Maybe I should go ahead and order myself a little 'radiation wardrobe' now that I have an idea of what it will need to be now. Like a big soft dressing for my chest. I need to keep in mind that I actually need a wardrobe that I could wear out in public, to the hospital every single day no matter how hot it gets, even if it will all be too big for me next summer. 

    I do feel encouraged already. I was down about my appearance, and the prospects of radiation. Planning a wardrobe for that helps, it gives me confidence. Even if I am still twenty pounds heavier. It gives me that sense of control over something - my appearance. The way I present myself to the world. It is the same idea of the Look Good Feel Better program. It'll cost me a bit of money. I think it's worth it. For all the other things I'll get done if I feel better about myself.

     I’m worth it. 

    Why do women always have to say that? Why can’t they just know it. 

    Dispatched: May 26

  • 25 May 2019 6:26 AM | Contact Me (Administrator)

    For me it was one kind of fatigue when I was on the AC every three weeks. Then a different kind've fatigue with the Taxol, and now more of a plain old tired fatigue as my body works overtime to rebuild those bonus things like hair and fingernails that I could live without if I had to, and to rebuild tissue after the surgery trauma too, at the same time. Of course I'm fatigued. 

    Saturday morning, sunny and chilly. There was even a frost warning last night. I don't worry about my balcony plants, we're not in a low lying area up here on the third floor. It was grey windy and chilly yesterday, but now it's bright and sunny, but cold. 

    Yesterday I did not go to the Botanical Gardens. I even put it on my Facebook page, the great gardening weekend started yesterday, and the lilac forest is in full bloom right now. I was going to go, but I did not go. 

    I did do my exercises, I did do my range of motion twice. I did eat good meals. I rode the stationary bike at a good clip for twenty minutes. I wrote in my journal. I read my online newspapers. I knit on the granddaughter sweater. I did get the blood pressure medication information faxed to Dr. M, and I got another bottle of lotion. I picked up some supplies from the grocery store. 

    But I didn't go to the Botanical Gardens. By the time I did my exercises and everything else it was noon. I was hungry and had lunch. I looked for my metro pass and by the time I found it I realized I was really tired. So I had a moment. 

    On the one hand I did really want to get back into life and have an excursion to the Botanical Gardens on a Friday afternoon. And just smell the lilac forest. And I did post it on my Facebook page that I was going to do this. So that made it feel more like an obligation. On the other hand I have made a promise to myself that through all of this I will always choose health. My health is my priority. When in doubt make the decision that will contribute to your health. That meant the nap. My body was telling me I needed to nap. I missed the nap the day before. I woke up early. I am healing from surgery. Through Dr. M's eyes I now see that the colour of that boob is not from the orange dye, that poor boob is one giant, deep bruise. There was a lot of blood in there, particularly in certain spots and my body has to heal from all that, and also clear it out, clear out all that debris. The stitches on the surface is the least of it. And of course there is also the gap/hole where my lymph nodes used to be that he felt as well and that has to fill in too. Plus there are the millions of hairs all over my body that are now growing at a ridiculous rate. I never realized it before, how much hair a person has, even it a lot of it is pale and soft - we are really just covered in hair. I was really tired. 

    And it was quiet. My husband was away at a camera workshop. So I lay down and had a nap. After about twenty minutes I woke up and thought, okay, I'll just take a bit of time to wake up and then head out to the Botanical Gardens. This was the old me talking. The me from when I had full health and used to still take naps because I was working super hard, and burning the candle at both ends. A twenty minute nap during the day could really keep you going through a twelve to fifteen hour work day. I chatted with my son a bit on Skype. My granddaughter is having her teeth pulled next Tuesday. Her birthday is next Thursday. A big week coming up for her. I'll order flowers and a card with cash money for her on Monday. My big expense for this month. And my husbands’s birthday coming up too. Expensive month. 

    I was still tired, I didn't feel right, so I went back into the bedroom and lay down for a bit more nap. This time I slept really deeply until nearly 4 pm. Clearly I needed it. That was yesterday. And I still didn't feel all that great. My muscles were stiff and tired. I was tired and blah. Perhaps I am over doing the exercise? I'm not doing that much. Walking for an hour every other day. Riding a stationary bike for twenty minutes on the non-walk days. Doing the core exercises, that adds up to forty-five minutes on the non-mountain walking day. But it does seem to be taking it out of me. I was doing okay so long as I was really faithful about that afternoon nap. Missed it for one day and it really set me back the next day. What shall I do? 

    I was disappointed to miss the Botanical Garden Friday play hooky day excursion, but it's not the end of the world. I can try again next week. I have every day off work now, there is no reason to restrict myself to Friday hooky days anymore. 

    Given that health is my priority, what should I do? 

    Today is a beautiful morning. I do want to do my mountain walk. Tomorrow was going to be my rest day anyway. And I will keep it that way. No exercise, no mountain walk tomorrow. Give the old body a chance to recover. Stick with the Sunday off and see if that does the trick, that I build up enough to be able to do six days of exercise with one day off? Tuesday, CT scan day. Let's take that as a day off exercise. And then surround it with gentle exercise. A walk the day before, and a walk the day after. I think that's a wise solution. And then go back to being more strict about the nap. Take that nap every single day. I need it. I am still recovering, not only from the surgery but also from the chemo too. There are layers and layers of recovery going on here and I want to get as strong and healed up as I can before the radiation starts. 

    And here this is a happy little voice in my head, we have already started to talk more in terms of preventing recurrence than getting rid of cancer. That's the way the radiologist presented it, changing my odds of a recurrence from 30% to 8%. At the cost of increasing my odds of getting another kind of cancer from 0% to 1%. But what does that mean really. The thing is I will die horribly if I get that other kind of cancer, it’s aggressive and terrible. And it will probably just be a second bigger surgery if I get a recurrence in my breast. So you have to weigh it that way too. Although the numbers make it look like a clear, good, obvious choice, the reality of the two options is quite different. If they give me less radiation, the least amount that will still work, then I will have less chance of all the side effects including that second cancer. Including lymphedema. I think that is the best I can go for now. But in all this there is the happy little voice. Preventing recurrence. This conversation has turned to preventing recurrence. Preventing recurrence. Yes. I'm ready to be there. Little happy dance in me. 

    In the meantime. Let's get better. Take my walk as planned today. It's too nice to miss it even if I am a bit wiped. Have a good nap. Don't care so much about the cleaning and plants right now. Perhaps vacuum my office rug, it is pretty gross. That's enough. The range of motion exercises. The 'kind' bath. I do wash my arm, and my armpit, and my poor breast. I wash them gently, I feel them from the outside and I listen to those deep pains, those odd deep, vein type pains and I sooth them, I try to keep my armpit, my arm and my breast 'with me' part of my body as they heal. My bath takes longer because I do this. My morning routine takes longer. 

    There are these smaller, but I think really important things that I'm doing too. The kind touch bath moments. The range of motion exercises. I dread them a bit. There is discomfort for sure, and the potential for actual pain when I do both of these things. And it's frightening to feel the damage. That too. 

    I understand how my mother just disassociated from her lack of breast and that arm of hers. She never did the exercises, she simply ignored the space where her breast, and her chest muscle used to be. Would it have been different if she'd kept them with her in her mind too? If she had touched her own body and gently massaged the skin would that skin have still grown onto the bone and necessitated that horrible, painful skin graft, that led to her drinking problem? Would she at least have known it was going wrong in time to get a smaller graft and better treatment? If she had done the lymphedema exercises that they gave her, more than once or twice, she quit because they 'hurt' they weren't comfortable, might she have saved that arm and saved herself from a lot of pain and obvious public disfigurement. She was so vain, it must have bothered her a lot, aside from the physical discomfort, the disfigurement of that huge arm. She did not do any of that. Not at all. So these are small things in my daily routine. That gentle just feel the area type of massage, feel it with my fingertips, listen to what it's saying to me. And the range of motion exercises. Even if they feel uncomfortable. They work. The rest of my day is better for them. I feel normal mobility coming back each day, more and more I discover I'm forgetting that I had surgery, I turn and move in bed, I roll over I get up more normally all the time.

    And I'm glad I've been doing this. It helped with the radiologist and that exam. I was comfortable to move around and be examined. I don't have my full range of motion back, but it was good enough for the exam. And my body did not freak out over being touched gently. I've already been doing it myself. It was okay. And that helps them doing a better exam if I'm not 'jumping away' and tensing up. 

    And I remember doing something similar with Moose after his leg surgeries. After the surgeries where they cut his knee joint and changed the angle. I remember that it did seem to me that he was disassociated from that leg. I remember that I started to stroke him gently, very gently, but firmly also from the top of his head by his ears, across his back and down through that leg, including the leg in the story of his body that I was making with my hands. Including the leg as a part of his body. I stopped short of his paws because he always hated people touching his paws. But I still remember the look of surprise when I first did that, when my hand first touched that leg after the surgery. And he let me. It was like he did discover/feel the leg and it was part of him, and it was okay. I did that every day after that as he was healing, I stroked him from his head down through his leg and he liked it. And yes, I think it did make a difference in how well he adapted to the 'new' leg, and recovered from the surgery. Not really physiotherapy just a simple touch. I think it's important. I know it's important. 

    So these are my priorities now. It's back to pretty simple priorities again even if I am getting stronger and recovering. Get up, have a bath, do that gentle massage, check on how things are going in the surgery area with my fingers as well as my mind. But also the whole body, keep it in perspective. I use bath time for that now. Even if I discover soreness and discomfort, just keep at it, keep those surgery parts of your body with you. Do the range of motion exercises. Same thing, I feel that tightness. I pull against the tightness and it doesn't feel better right then. But I do feel better every day. And I've seen what can happen if you don't do this. So. I know how much it's working even if it doesn't seem immediate. And yes. I am getting my arm straight over my head now, almost straight, and I couldn't do that at all before, the discomfort started much further down. It is working. And I think doing the muscle things are helping to keep the lymph fluid moving correctly, and I'm teaching my lymph system how to recover and live, work around those missing lymph nodes. That's my theory and I'm sticking to it. 

    And then comes the bigger exercise. That's the stationary bike and the core exercises and the mountain walk. Those things stimulate my big pelvic and leg bones to make blood. They increase my body's circulation which sends all that nice new blood around to clear away dead debris and deliver building materials for new growth - like surgery recovery, like all this hair I'm growing. That's all good, and important. And the walking, and I do believe this, also stimulates my 'will to live' keep up with the pack, herd, tribe, family. A deep mammal instinct. Walking and will to live. Plus the stationary bike is long enough for some endorphins to kick in now too, and that feels good, and is addictive and can contribute to will to live too. So that's a priority as well. And the other bit of mental health simply from being outside in a bit of nature, in fresh air. All good. All priorities. I just have to be careful not to over do it. Just as I have to be careful not to rub too hard with the self-massage and hurt myself, or push too hard with the range of motion exercises. This is about finding that right balance of moving forward, doing more each day, without going too far too fast and injuring yourself. You are really the only person who knows exactly where that tipping/balance point is. 

    And then comes the nap. It takes energy to do all this re-growth, this debris removal, and this increased exercise program. I still need my nap. It's not chemo fatigue this time. Right now it's old fashioned fatigue from exercise. A nap helps. Resting helps. I'm tired because my body is doing more and working hard. It is more like I being pregnant. Your body is just busy doing a whole lot more stuff. You need to give it time to do that extra physical work. Naps and sleep are good times for your body to be rebuilding, and creating all that new growth. I am still going to bed at 10pm every night. I wake up around 5am in the morning and I have to have my afternoon nap. And sometimes I still have an early evening nap too. In between I have way more strength and energy. I can walk for an hour instead of to the end of the street and back, I can ride the stationary bike, I can do those core exercises. But I still need to sleep a lot. Now I am honestly tired. I can feel that. It feels like just plain tired. And sleep does help it. 

    So it's still fatigue, and I still sleep a lot. That part is the same. But the reasons and results are all different. Interesting. And the in-between, not sleeping part is so different. This is all happening in a way that I understand now. It's like getting back your strength after a big illness, or after a long period of no exercise and getting back in shape. This is more familiar. I get how to manage this. 

    Yes I do think some of this is still chemo. All this hair growth I think it contributes to exhaustion. It's exhausting just looking at it! I'm so hairy, there is so much hair, everywhere on the human body. I am like a child growing. I haven't had to do this much growing since I was a child, or since I was pregnant. And all of that was a long time ago. I get it that I need to sleep more the way I did when I was a child, the way I did when I was pregnant too. And how I wished I could sleep more after the babies were born too! I get it. It's not 'normal' for someone my age to go through so much growth, but essentially this part is not that different from being a child or being pregnant. It has a familiar quality. I know it will settle down once my hair all comes back, once my new nails all grow in, once my bones get strong again, once my gut cells get back to their old selves, once this surgery damage is dealt with. 

    My gut feels the most recovered. It stayed pretty good through out. No real diarrehea, and no real constipation. But it wasn't until I had my first, 'perfect poo' not that long after I finished the last of the surgery drugs that I realized that it hadn't actually been 'normal' the whole time either. I had soft textured poo during chemo that was easy to live with, but it wasn't 'normal' poo either. It was soft and this almost grey colour the whole time no matter what I ate. I was just thankful it wasn't something bad. And I thought it was still normal compared to what I heard was going on with chemo patients all round me. But when I had more first 'normal' poo with a firmer texture and more colour I could see the difference right away. And now I always have a normal poo, and it's regular, and the colour varies depending on what I've been eating. It's not just this uniformly greyish coloured, soft thing. I've been braver about eating more and more normal foods since then. Soft cheeses, fresh greens, berries, pomegranete juice yesterday. That's what I bought, it was on the chemo no, no list. But I bought it yesterday. Chemo is done now.

    But I can see where my body still has a lot to do to recover from this. And I can see where and how to help it along, by giving it enough calories and nutrients, enough exercise to build blood and promote circulation, and enough rest to actually do the extra work needed. I can see where this part of the fatigue could last  for a while now as I recover, and that's without any additional problems cropping up. 

    So I am giving myself a break. There are none of the other things that I want to do with my life in either the big picture, or the little picture of daily life that I will be able to do without a body. Period. So whenever it's an either/or choice right now I have to choose in favour of my body. Period. 

    This is more than I bargained for, this is more than I expected, or was led to expect at the beginning. I am down further than I imagined would happen, and I'm one of the lucky ones who sailed through everything with miserable side effects, but no serious complications. And a good outcome, good results. It's still a lot of damage, and I know that it will still take a lot of time to recover and rebuild. Way, way more than I expected. 

    But none of this is weirdly mysterious either. It all makes sense. Every flavour of fatigue that I've been through makes sense. It was probably all to be expected. Each in it's own season, each with it's own cause. I think having gone through it myself I could almost predict this for other people. I don't think it's all been especially unique to me. 

    And here is the thing, I noticed there are gaps in what the professions know and do. It's like they've really nailed it in some ways. They stopped the taxol at exactly the moment when one more dose would have been too much. They gave me as much as I could stand, as much cancer killing as I could stand and still recover while the cancer stayed dead. And they are on top of it with the after surgery physiotherapy too, the after surgery, get me ready for radiation. This seems to be a detail that did not exist in my mother's time that they've really nailed. And I think the diet advice has improved too, but is still not perfect. But the fatigue part, while acknowledged still seems so mysterious to the healthcare providers. Is it because of the different flavours of ‘fatigue’ ? It’s not just one thing. Perhaps that's it.

    For me it was one kind of fatigue when I was on the AC every three weeks. Then a different kind've fatigue with the taxol, and now more of a plain old fatigue as my body works overtime to rebuild those bonus things like hair that I could live without if I had to, and to rebuild tissue after the surgery trauma too, at the same time. Of course I'm fatigued. And I guess it's still not the old fashioned, grown up, adult, just too much work, or staying up too late too many nights in a row fatigue. This is little kid growing fatigue, or even teenager growth spurt and changing fatigue. Your body is busy doing it’s own thing. That takes energy. That's what this part of the fatigue feels like now. And I expect it to feel more or less this way right up until all this regrowth is done. That's only realistic and reasonable. 

    And that will be a while. My nails are only part way there. My hair is still this fuzz cap, there's lot's of room for growth there. And these are just the things I can see. My boob. Plus there are the bones, and the gut, all that needs to grow back and get stronger and established too. 

    So. Give myself a break. 

    And yes, it does mean a bit of a re-plan for my immediate future. It's not just the Botanical Gardens. There will be a lot of things I won't be able to do for a while. And yes, this is a peek at the time after radiation when I start to really recover. This is a bit of a lesson on how to plan for that time. Right now I'm recovering as best I can, but I know my window is limited four to six weeks, and then we are in it with the radiation. Recovering and being damaged all at the same time, it will be like the surgery I imagine. Some of these full body recoveries will continue. Hair on my head, but it will take extra energy to deal with the new damage too. It will set me back. But not all the way back. Nothing will create that 'full body damage' backwards that the chemo did. That part will keep recovering and going forward around these site specific injuries like surgery and radiation. I get that too. But I get where the 'site' could get pretty miserable too. It won't be all the way recovered from one thing when the next thing hits it. 

    Yes, my mission is to get this 'site' healthy and mobile, and working as best I can before it gets hit again. More damage on top of the damage that's already there. Let’s try to reduce the damage that’s already there by the time that next step starts. Keep nurturing it through the whole process as well. Keep that part of my body with me, even if it's painful. That's the big plan. 

    But as I think of the next few months I realize that this will go on a lot longer than I thought. First off just technically. The radiation won't start until the end of June. I imagined that it would start at the beginning of June, one month after the surgery. I did not know that one month meant the start of talking to the radiologist. And then it would be a month after that, and then two more weeks. So in fact it might not be until mid-July that the actual radiation begins. Then it will be four to six weeks from that time. So that is mid-July until the end of August. And then a month to recover from that. And now I know they mean it. Now I know that I will lose skin. The radiation will kill developing skin cells just the way it kills developing cancer cells. It kills all developing cells. Not just the fast growing ones. All of them. That is why it's confined to a smaller area. I won't grow new skin. My old skin will still die off at it's normal rate but I won't grow new skin. We'll play that slightly different game of risk with death and permanent damage. So, it won't be a macho thing of when I think I will feel recovered  from the radiation. It is simply the amount of time for new skin cells to grow and be plentiful enough to actually start doing their skin job of protecting the inside of my body. So it will take that long to recover. Period. I get it. Now we are talking mid-September to the end of mid-October, and that's in the best case, if all goes well and there are not additional complications. And that is not the time to full recovery. That is the time to starting to full recovery. That is how long I have to wait until I can start full recovery. Exactly one year after the first chemo treatment. The whole process actually takes a full year. 

    So now I start to get it. Now I see the lay of the land. 

    I would say, no summer holidays for us this year. 

    I should enjoy this break and take advantage of any mini-holiday moment that I can get. Yes, I should go to Camp Comfort if I can, make a huge effort to have that bit of cottage time. And any day trips too. From here until the radiation starts do as much of that as I can. And even in the first weeks of radiation while I still have good skin on that boob. Get out and about as much as I can then. I expect there will be about a month or so of sheer miserableness. That'll be the last few weeks of radiation and the first few weeks of recovery afterwards. It will be some flavour of miserable for sure. These guys have been honest about the dangerous side effects, and yes they describe the other ones too, but they do it without really telling you just how miserable it's going to be. You have to read between the lines. I read between the lines. No bra, soft camis instead if you must have anything, to go out in public. Reading between the lines I understand that part as lying around topless because everything hurts that tender area where there is not enough skin to protect you. Air drying your boob and armpit instead of being able to use a towel. I won't be going swimming even if my immunity is okay. I won't be going out and socializing either. Perhaps four to six weeks of life like that. ‘sunburned'. Perhaps blisters even. And I'll have a 'tan' afterwards that could last up to a year. So. Now we are talking next August or September, two years to basic recovery. That's how long we are talking for anything like a full recovery. And that is if all goes well. Cancer is killed. And doesn't come back right away. No complications.

    Here are the questions that arise from this new assessment of my health future. 

    Can I really go back to my office job? They aren't expecting me until the fall in any case, they won't have enough money to pay someone until then. But could I go back, and do it, and run a future conference, it looks like next spring? Could I work that hard? That soon. And perhaps even more to the point. Do I want to? 

    Can I do the Ironworkers TV series? It's extra money. But I won't really be available until the fall. On the other hand, there may not be very much to do, my young directors are getting pretty good on their own, they can mostly do their own story making now. It will only be the beginning directors who might need help. I’m not as needed as a mentor.  And do I want to? 

    Realistically. If I keep going with the tv scripts, and if I go back to my office job then I will not be able to do that much for my further future plans until this time next year.  I don't want this cancer part of my life to drag on too long. The Wellness Centre said two years. They like you to be done with all the personal recovery by two years after diagnosis, as a general rule of thumb.  

    I don't have to decide this minute. It is a bit of a juggling act. Yes. I want the extra money. I'll be sixty-three this summer, I can expect to work for two more years even if year one is a slow year and I don't make much money. I like those people. I want to continue to develop those relationships. But I also really want to get moving on this next phase too. So. Things to think about.

    I don't have to decide this minute. Why not? I am still waiting for key information. 

    The main bit of information that we can know, and will know soon is the pathology reports from the surgery, and CT scan. We can know that in two weeks. I will make my decisions differently based on that. If I am clear of cancer, and especially if there is the option of a partial instead of full breast radiation, then that's one thing. If there are signs of potential cancer in the CT scan, or if there is cancer in the margins of the surgery, or if this cancer is more aggressive than they thought originally. Then I will make a different plan. That plan will be based on the expectation of ongoing treatments, severe treatments and a serious chance of both recurrence, metastisis, and second cancers as a result of the treatments. That's a whole different ballgame. 

    If the news is, as I expect/hope that the cancer is really gone from the lymph nodes, that it is really gone from the tissue they removed, or even that they got a good margin on that tissue, and that it does not appear to be anywhere else, then I will go ahead with this one more year of work, at least the script work, and maybe even office job depending. 

    If it's something else, then that will be another story, depending on how bad that something else turns out to be. Soon. We'll know soon. 

    Dispatched: May 25

  • 24 May 2019 7:51 AM | Contact Me (Administrator)

    I met the radiologist for the first time. My radiologist. I love him. He is a short, round, fat, black man. And he laughs at my jokes. He gets them and he laughs at them. He has time to listen to my jokes. He has kindness and courtesy, and he displayed it both to me, and to his student. We all laughed. 

    Friday morning. A blue sky day today with only wisps of clouds. My plan for today is to do the exercises and to go to the Botanical Gardens. This will be my first real excursion off on the metro by myself. I think I'm ready. Two good reason to be there. One, the lilac forest will be in full bloom and it is worth it to just blast my nose with the scent of lilacs even if it's not fabulous weather to take pictures. And two. It's the beginning of the great gardening weekend so all those garden store, farm site kiosks will be set up. Double reason. And it's Friday. And the Botanical Gardens were on my Friday play hooky routine, and they have been a real refuge for me ever since I moved here. Now, as I am returning to a feeling of health, going to the Botanical Gardens is a perfect first excursion project. And it doesn't matter. If I have a fail for some reason then it's okay, it's not an appointment or deadline. I can always try again later. 

    So that is something to look forward to, today. 

    And yesterday, the day I was dreading turned out to be rather great. I met the radiologist for the first time. My radiologist. I love him. He is a short, round, fat, black man. And he laughs at my jokes. He gets them and he laughs at them. He has time. He has kindness and courtesy, and he displayed it both to me, and to his student. We all laughed. I think the student couldn't believe how cheeky it was. He liked that I'm a science writer. I now tell people that I'm a science writer. I leave out the whole aboriginal thing all that work I did for so many years and it's way easier and more relaxing. I fit these identity shoes much better. I'm a science writer, and I'm even the Executive Director of Canadian Science Writers. Which somehow sounds like I'm the best-est science writer of them all. Which is not at all true. And I am barely even a science writer. But I'm putting it out there. That's the direction I'm taking and I'm going to keep going that way, may as well start naming myself like that and start living up to my name. And the doctors like it, and I find that they explain things more, and better after I've told them I'm a writer and a science writer on top of that. So that's my shtick now when dealing with the medical profession. I'm a science writer. 

    Dr. M. Radiology. Radio therapy. The big first, good news. I get a break. More of a break than I thought. It will be four weeks before I see him again, four more weeks! and even then, that appointment will be to do all the scans that will give him a good digital read out, version of my chest and breast, and he'll use that to create his treatment plan. That'll take another two weeks. So it will be six weeks before I actually start treatment again. And he told me I'd have around three weeks after that before I start to get the skin reactions. So, now we are talking nine whole weeks! Two months and a bit from here. I might get a break from now right through to August. And then it sounds like a month or so of misery. Not the full body misery, but localized misery that will be enough to make me feel miserable. Radiation doesn't accumulate in your whole system the way chemo does. But it damages the skin cells in the radiated area, it keeps them from growing, and the longer you're not growing skin, the less skin you have, and that's how it turns into a problem. When the radiation stops the skin can start growing right away. And I guess it will be around three weeks from then until it's okay again. Baby skin. New skin. Perhaps even weird, like my new baby hair is weird. So. It will be a thing. But I will get a real break, physically and mentally between now and ‘the thing’. 

    And the radiation people are much more human, I don't know why. The place is more human, the way they operate is more human, it's better. I like it as a place even if it will be a treatment place. Dr. P was right about that. And Dr. M is really human. I saw the original doctor I was supposed to have out pacing the hallways. I didn't like him. He was sour looking. Pinchey mouthed and sour looking. Glad I got Dr. M after all. 

    He examined me and gave me some good insight into my surgery too. The reason my breast looks like a loaf of bread, and feels weirdly hard on the armpit side is that there was bleeding in there, that dead blood will gradually dissipate and things will go down and be softer when that happens. That was good to know. The stitches are all healing up nicely. I knew that, but it was good to have it confirmed. He was glad I was seeing the physiotherapist, and working on my range of motion, and he understood right away when I told him that as soon as I get my range of motion back that I'll be moving onto weights in order to get more blood flow through the area and break up scars as they form. That was good too. 

    But we did start on an odd note. He started off saying so, Ms B you are here because you have a mass in your lungs and we're going to do radiation on that. What?! Anita B. There is an Anita B in this hospital. She has the exact same middle name and last name as me. She is getting radiation, starting as a new patient. How odd is that? I made a joke of it when he found my real file in the computer, I said, whew, I have enough problems of my own without borrowing her’s too. 

    And we had another good moment when I told him that I'd discovered my tumour myself, because of the inverted nipple and my mom showing me her cancerous nipple when I was younger. He looked at his young student - I saw the look pass between them, and said, ‘What?” He said to for the benefit of his student, “The message here is listen to your mother”. And he added, “It’s not all folktales, it can be true.” He is a doctor who would get it when I talk about the old healers and how those ideas have helped me get through the fatigue part of the chemo. And it seems that we will have enough time to talk a bit too. I feel good about this. 

    And I have enough time to get better. And next week will be the CT scan. And the week after will be the big meetings with Dr. B and Dr. P to look at the results. Am I cancer free? Just getting radiation as a precaution - right now my risk of recurrence is 30%, after radiation it will be 8%. Worth it. It makes me thing of my stats coming into this. Stage three breast cancer. My five year survival rate was 74%. Similar to the recurrence rate. Without further treatment, without radiation my chance of not having a recurrence is 60%, more than half. More than fifty fifty. I used that when I thought about that stage 3, 74% rate. Not the 90% that people are now used to when they think of breast cancer. But still significantly more that 50/50. And in the end it's always an individual thing. I can beat all the odds. In good ways, and in bad ways. 

    One thing he did mention, is that if my sentinel lymph nodes really are clear, then he could offer me a lesser radiation that only targets the area where the cancer was removed and not the whole breast. There is a trial going on about that, I could be part of that, but we'll wait and get the pathology first. And I see that is actually on of his own clinical studies; partial breast radiation and lymphedema. It fits with my goal. Saving my arm. 

    Yes! Did I mention that I'm happy about this. 

    It all feels right again. Like it's going the right way. And of course I am still partly a child and simply this immediate break is good. I'm just plain happy about that too. In a purely childish way. Some medical stuff next week, some medical stuff the week after but it’s all tests but not treatments. And then in a couple of weeks we'll know. Cancer free and we can go targeted on the radiation. Or yes there are cancer cells, and time to really deploy that radiation as the next line of defence. Or my version of the warrior, expansionist cancer cell terms, did all those warrior cells get killed? Is it only the demented-stay-at-home-uncle cancer cells that survived. Did all the cancer cells get knocked out and killed? That seems impossible to me. But at sixty, with a cancer that might twenty years to get organized and growing big enough to kill me I'm okay with that idea. 

    In the meantime. I have today. I think I'm doing well enough to do my exercises this morning. Have my bath. And then dig out my metro card, my access card, and head over to the Botanical Gardens, spend some time at the kiosks and in the lilac forest. A bit of a  double exercise day. It looks like it might rain. I will still go to the botanical gardens anyway. The lilacs will still smell good, the kiosks will still be interesting. 

    Life is pretty good. I'm feeling pretty optimistic. 

    I did end up getting the worst treatment scenario that I imagined at the beginning. That's what I said would be worst, a whole year of chemo, surgery and radiation. That's what I've ended up getting. By the time this is all done it will be the time that I started, only the following year. It will have been a year out of my life. 

    My cousin posted on her Facebook that she is officially a cancer survivor. Cancer free. She only got diagnosed shortly before Xmas, and she's all done now. I started way before her, and I'm still not done. I still have this whole other wave of misery to go through yet. But I congratulated her, good for her. And moving on. That's the spirit! 

    But yes, it does make me feel a bit worse that she is done and through it so much more quickly and easily than me. But I’m happy that this young woman with a young family did not have a rough treatment schedule like mine. 

    And who knows, maybe I am cancer free too. And I just don't know it yet. 

    Dispatched: May 24

  • 23 May 2019 6:39 AM | Contact Me (Administrator)

    All you have to do to get there is be ready to drop everything and simply be there in that moment when it happens

    It was a beautiful dawn this morning. 

    This year, for the first time in my 'from another generation' life I was instructed by a young nurse to 'go to my happy place'. I had no clue where the heck to find this 'happy place'.  I've heard about it, but never tried to go there myself. I was under the gun too, when someone tells you to go to your happy place they don't give you a lot of time to find it and get there before you really need to be there already. 

    So, under pressure, I discovered that my happy place is somewhere in the sky. Sunrise, sunset, magic hour, rainbows, northern lights, sun dogs, full moon, milky way, big storms, fluffy white clouds, looking up at rain from under the ocean, shift change on the reef, dawn on the reef. Turns out my happy place could be anywhere, and even better it just comes to you, you don't have to go to it, no money or travelling required. Fleeting yes, but always possible too. Anywhere, anytime. All you have to do to get there is be ready to drop everything and simply be there in that moment when it happens. And yes, turns out you can just go there in your mind too if you have a library of memories - within seconds, if you have to. I just love my happy place. I'm glad I was forced to discover it.

    And I'm really relieved that I don't have to wait for retirement, or save up all my money or do anything big and spectacular with my life in order to get there either. 

    Dispatched: May 23

  • 22 May 2019 4:49 AM | Contact Me (Administrator)

    Another piece of tape came off, this time under my armpit. I did my range of motion exercises - twice. I still feel the pull, but no pain. Leaving surgery behind me more and more each day. 

    Wednesday morning. It's a grey morning, and cooler today, as promised. Yippee for me. It feels great. Another reprieve, and it looks like it will last for a week or two. Yippee. I don't care if it brings rain or whatever so long as I get a bit of a break from heat and humidity. 

    This morning there was an email from our friend T in my inbox. Camp Comfort is vacant for the next five weeks and he's invited us up to do a bit of gardening and simply have a good time. He sees from my Facebook postings that I seem to be on the recovery road, and out and about more. The routine is that we have the first night dinner with them at their house on the hill, and then invite them for dinner at Camp Comfort for the second night's dinner. The weekdays are free for sure, but if we go for a weekend there is a chance that we might get bumped if he gets a paying guest. I would like to do this. I would like to spend some time in the country, by a lake, aiding my recovery, and I would like to do it before we get trapped in the city by a radiation schedule. 

    A bit of summer holiday before radiation would be nice. So. I need to talk to my husband, figure out how to present this, see if I can convince him. Also look at my own schedule of medical appointments and see if there is a time that works for me. The last time we were at Camp Comfort was several years ago. It was fun. We had a good time. Moose was an old dog then and it was a treat for him to get out of the city, ditch the stairs and have a lake to swim in. It was good for him. It was good for all of us and it will be good for me this time. Hopefully it will work out.

    Yesterday I did do my list.

    I did the mountain walk and I got to the same further level. Then I took my old walk along the path from that spot to home. This is the walk I took last fall when I was coming back from the first, it might be cancer doctor appointments and tests. I did that walk with the, 'this might be cancer' feeling. Not knowing for sure. And I did that walk after Moose died too. I really felt his absence walking that path through the park. It was a mourning walk for me. I still mourn him. Now it is more of a feeling of how can it be, that he lived his whole life here, with us, and now he's just gone. His life is ended and ours goes on. How can that be? How can we still be here without him. He was such a big part of this little family. He was the centre of our love for a long time. And now he's just gone. And it wasn't a life cut short - he lived a long dog life. It was an entire full lifetime that simply came and went. I guess it's because I knew his whole lifetime. Puppy to old dog, that's why it feels so especially weird and wrong. Even our old, long lived cat Frodo was already past being a kitten when we first got her. I did that full mountain walk. I took me an hour. So it still takes the same amount of time but I go further in that time. I'm walking faster now. Further and faster. That's good. 

    I had a nap. 20 minutes. That was fine. 

    I had a few text messages and pictures with my sister. 

    I did my laundry. It was a small load. Summer clothes aren't as bulky as winter clothes. 

    I had my bath, another piece of tape came off, this time under my armpit. My arm sticks less, that was an especially annoying one so I'm glad it fell off. I did my range of motion exercises twice. I still feel the pull, but no pain. Things do seem to be getting better again now after it felt like it was stalled for a while. 

    I did my ‘me’ list. Yesterday was really all about taking care of me. I nuked myself a little homemade casserole that I made back in January. It is actually hard for me to believe that I was able to do stuff like that back then. That I had those breaks in the chemo beat down, and I did stuff. I don't do that kind of cooking now. I miss cooking. My office rug is filthy. But I'm not up to vacuuming. Surgery is a different kind of disability from chemo. And mentally something has happened to me, I am conserving my energy even more now, even though physically I have more energy, it's different. Mentally I am somewhere different now. I am not being as 'tough' as I was all winter. I think it is partly from having my son and then my sister here for support. It allowed me to relax, I saw myself through their eyes. I saw how weak and damaged I've become. I'm am giving myself even more of a break now. And it's that support group too. I see how messed up some of the other women are, I see that tipping point, and how they pushed themselves over the edge into nervous freaking out. Trying to be too much, trying to control too much, trying to be their old selves all the time. Too soon. Trying to do that while they are still in treatment. That also encouraged me to back off, and let myself 'just be' more. 


    Plus these are the 'results' times coming up. I really am in this pause. This might be my only break for a long time. If there is more cancer floating around that they want to deal with, if they discover that the cancer that was in the tumour is more aggressive than they thought. If they discover it has the herceptin receptor after all. Then I could be in for a whole other year of treatment. These few weeks could be my only break. I cannot make enough casseroles to get myself through another year of treatment. I cannot clean this house good enough to get me through that. That would be a whole other ball game. I am not ready to prepare for that. Even though it doesn't hurt to make the casseroles anyway. Even though it doesn't hurt to clean the house anyway. I’m still not doing it.

    There is more treatment coming up radiation, and then daily, oral drugs for the next ten years. That is the best case scenario for me no matter what. Giving myself this bit of break. 

    I had a nice long talk with my office job replacement. I remembered all this nice part of the conference, the final run up to it, after everything is more or less in place. It's a nice memory. Riding the train home from Windsor. Riding the train home from Toronto. Yes, I do like that job. It would be nice if I could be doing it again soon. 

    Today is exercise day. It'll be a ride on the stationary bike. I'm enjoying the Whitehorse album on my iPhone, so that's what it will be. And the core body exercises. I'll stick with 10 repeats, two times for this session. But if I feel okay, no sore butt muscles for Friday, then I might either add a third round, or increase it to 15 repeats. I do not know which is the correct next step. 

    So that is where I am at now. A fairly simple day for me today. 

    Tomorrow is meet the radiologist day. My first radiologist day. That will be a thing. That will be the beginning of my next thing. Tomorrow. Not today. 

    Dispatched: May 22

  • 21 May 2019 6:27 AM | Contact Me (Administrator)

    It does help to keep fighting back and get as far as you can before they knock you down again. It seems futile and frustrating. But it is worth it, even if you don't get all the way back, every bit of ground that you can re-conquer for your body is worth it. It helps you get right through to the end. So. Get back up. Again. 

    Tuesday morning. Day after a long weekend. Actually, none of this matters to me at all. As far as my life is concerned right now, today is the same as Monday morning of the long weekend, and much the same as Wednesday morning will be too. I am not working. Week days and weekends mean nothing to me except as they relate to my husband and his rhythms around the apartment, and basically that means whether he is going up and down the stairs to the office or to the market, whether he is napping on the couch up here, or in front of a computer downstairs. The couch upstairs has some impact on my life because it means that I can't be napping on the couch at the same time. But that's pretty much the only difference between work days and holidays now. But this is still huge for my husband, maintaining a nine to five work schedule, maintaining weekends on a different schedule is an important part of how he works - and I live with him. So all of that has dribbled through to me. Officially this is a back to work day. 

    I'm not going back to work. Today is a mountain walk day.  And the range of motion exercises. I'm doing them twice a day now. For sure twice a day, and smaller ones, just general things without the broom and other props whenever I feel 'tight' or 'stuck'. I'm paying attention, listening to my body. Which is actually also a bit of a drag when your body is not quite right. Listening to it means that you are more aware of all the things that are still 'not right' Yes there is a slightly swollen bit on the armpit side of my boob. I feel it, it is so slight that you can only see it in the right light, at the right angle, but it is there. If I wasn't listening to my body I wouldn't know about it. But it's not significant yet. It's really too small to do anything about or to signify anything. It is probably some sort of fluid build up that will likely go away by itself, or it will increase and then be obvious to everybody and require some sort of drain. In the meantime there is nothing to do but leave it alone and see which way it goes on it's own. Keep up with the exercise so that blood circulates freely as possible, but not so much exercise that I damage things and cause problems. Balance. It's always about balance. The art of everything in life. Balance. 

    So this is my 'work' now, getting better. I give it the majority of my time and thought every day. The bath is where I also check things out, see how they are healing, and feel with my hands how the soreness in that arm and armpit, the veins is going. The range of motion exercises where I stretch until I feel the slight 'pull' but not to 'pain'. They are not really comfortable to do, but the rest of the day is more comfortable when I do them. And I am getting my more of my natural movements back each day. Last night I woke up and found I was sleeping on my side more like the old days. It felt good to be sleeping in the old position again. It will feel fantastic when this all heals enough that I can sleep on the surgery side again. 

    Yesterday I did the core exercises. I did the stationary bike ride, I added one extra song so it was 20 or 25 minutes and this time a couple of the songs had a faster tempo so I did work up a sweat too. It felt good. And then I went in the bedroom and did the core exercises on the rug and chair there. 10 repeats, do the whole circuit twice. My butt muscles, those gluts are sore this morning but the rest of me is fine, and yes, I am getting that 'back to yoga' feeling of the ab muscles being stronger and lifting up all the time - it feels like losing 10 pounds. That muscle lift felt good. 

    Today is the mountain walk. I am settling into an exercise routine again. Actually I never left it. The chemo exercise routine was get up, get bathed, get dressed, walk outside, seven days a week. Some days I could only make it to the end of the street. Some days I could go as far as post office with my husband and then walk home on my own. Some days I could carry my own laundry to the laundromat, some days my husband had to do it for me. That was my exercise routine through the chemo. That was as much as I could do. There was a brief time, maybe a few weeks on the taxol when I was recovered enough from the AC that I could start doing yoga again, and I did that a couple of times, up to three times a week, for maybe three or four weeks, out of the twelve weeks. At that point I could feel that the yoga was doing more harm than good, I felt worse instead of better when I did it, so I stopped again. I'm still not up to yoga, on account of the surgery. But the rest of my body could take it right now. And I'm not having any of those, 'toxic' ill sensations that the yoga triggered during the taxol. This additional, and more vigorous, and also more endurance exercise has not triggered any bad chemical feelings. And I am getting stronger at a surprisingly fast rate. 

    Yesterday I told my office job replacement that I am up to being a kindergarten kid now. During the AC I became an infant, two or three months old. Then during the taxol I moved up to being a toddler, and even a bit like a terrible twos, two year old with the mental effects resulting from the shooting, and/or burning random pains. And now, almost two months after the last chemo I feel like a kindergarten kid. I could maybe go to school part time now, (or work) I can be a bit more responsible now too. I can take care of myself in more ways, I am more independent. If my husband had to go away for a week I could probably take out my own garbage, cook my own food, get my own groceries, do the dishes, do my laundry. I could manage. I would survive now. But I'm still not ready to be a full adult again, not just yet. And I don't have to be either. 

    And I am not fooled by how good I feel now, how much stronger I'm getting. We've been through this before. I felt like this during that magic moment between when the AC left my system and the taxol started to build up and get more toxic. There is more to come. This is a magic moment, enjoy it  while I can. But it's not the end. This is not the start of being better. This is not the start of being done. There is a whole other treatment, with it's own side effects that will be piled on top of whatever I've got now - chemo damage, surgery damage. And then, if all goes well and there is no further cancer, if all these treatments have done a good job, then I can settle into the long slow, real recovery. And that will take me through the next couple of years. Everybody has said the same thing, when you go through a big thing like this it takes a couple of years to fully recover after the initial recovery period. That seems about right to me. 

    But things change sooner. Now that I am off chemo, and now that I am able to eat regular food again, now that I have gradually re-introduced regular foods one at a time and I'm pretty much back to where I was, I have discovered that where I was is a whole new place. I have been looking into the estrogen producing foods. And there are more of them than you think. Yes, flax and soy are the big ones. Off the list for sure. And soy shows up in a lot of places that you don't expect. Soy lecithin, it's used as an emulsifier in all kinds of processed and ultra processed food products. The rice crispy bars that George bought for example. And peas and other legumes have estrogen in them too, not as much as soy, but still, I should not be eating the massive amounts of fresh in the shell peas that my husband  and I have been eating together. I ate a few of the fresh chick peas, a few of the fresh peas, and that was it. Not the big free for all, good for you snack food that they used to be. They are on my eat moderately list. I can still go crazy for the crucifers though. Broccoli, cabbage, cauliflower. And I like them. And meat so long as it's not raised with growth hormones or charred. I can see where my diet will change. So far it is mainly about saying no, or less. But soon I will have to start to be more active about cooking for myself. And developing my own low estrogen way of eating. 

    Right now my focus is on getting stronger. Doing the exercises, getting my range of motion back and building up my strength as much as I can ahead of the next series of treatments. 

    It does help to keep fighting back, and get as far as I can before they knock me down again. It seems futile and frustrating. But it does really help. It is worth it, even if you don't get all the way back, every bit of ground that you can re-conquer for your body is worth it. It makes it easier. It helps you get right through to the end. Get back up. Again.  

    My eyes are bothering me again. My lower eyelashes are coming in at a great rate now. But the eyelids are still rolled in and so the eyelashes actually rest against my eyeballs. It feels miserable. I don't see properly. I put on the gel, but it's not strong enough to hold the lashes down onto my eyelid, it just makes a softer layer between the lashes and my eyeball, and it leaves this goopy residue in my eyeball that blurs my vision. What I have is called Entropion. That is my problem. It's been a pain this whole time. The only real relief I had was when I had no eyelashes at all. Now that they are growing back this pain is back too. I suspect that I will have to get my eyelids done once all this treatment is done. Get my eyes checked, I will probably need a new prescription and glasses/contacts. And also eyelid surgery to turn my bottom lids back out again. And my teeth in case I have another run of chemo to get through before this all over. And just because it's a good idea in any case. Repairs. Past sixty. Other people are getting their knees and hips done. Some are getting hearing aides. I need new glasses, eyelids and teeth. We are all going bionic, each in our own way.

    Yesterday I did knit for a while, but I noticed that my hand pain is coming back, so I didn't over do it. I did read for a while and that was good. I finished off watering the plants. My husband cleaned the bathroom sink. So I didn't have to do that, and I didn't look around the bathroom for more work to do. My arm is not up to that. 

    I looked at the rugs. They all need a good vacuum for sure. But my arm is not up to that yet either, so I am ignoring them. That is how we live now. Me and my husband. I know this is how old people live. There are many reason why I have not vacuumed the rug over the years. First I was too much the child and used to someone else doing all the housework. And my someone else was my mother who was a terrible housekeeper and set embarrassingly low standards so I didn't even know that it needed to be done. Then I had little children and most of the time I was just too busy, they were too messy and no matter how much I vacuumed they stayed ahead of me on the messing front. And then I was working. And I was too busy then too. And sometimes we didn't own a vacuum, couldn't afford one and that was a reason too. And now I'm simply not physically able. I will recover. For sure I will recover enough to vacuum again.  Oh well. I am not going to stress about it in the meantime. Housekeeping is not my number one mission these days.   

    We are in a transitional phase. I'm doing what I can with this moment. None of this will last. Things will change. Things are up in the air. Things will get better. Things will also get worse before they get better again. I am getting more and more tired mentally as we go along. I think that I am physically strong enough now to do some of the things that I did in the early days of diagnosis and chemo, but I don't have the mental energy or interest in doing them now. I enjoy the sheets I bought, and the bottle garden, but I'm not thinking like that anymore. I don't care about my environment that much anymore. I have given up control, and thus interest as well. 

    Yes, I am glad that I decided to take that medical leave from my office job. And I am glad that I activated all my insurance plans too. It saved my butt. 

    As I take care of myself, walk, exercise, do all the doctor appointments, take all the treatments, I am buying myself my next life that is what I am working towards, that's is what I am going to buy with this time the cancer treatments will in theory give me. I'm paying for it with this full year out of my present life, and with two years of recovery. In return I will get another ten or fifteen years of good, reasonably healthy productive life. Time that I can spend with my family and my friends. Time to watch my kids and grandkids grow. Time to participate in their lives. Time for love. More time to love them. 

    When I walked through chemo in my mind I was walking down from the imaginary  mountain top, I was walking from low oxygen death to safety. When I walk now I am walking towards strength. I am well out of the death zone now and I am going up the road, through the trees towards strength. I am building myself up now. I am weak but getting stronger. Each time I walk up this forested mountain I get higher, I know I'm stronger. Each time I ride that stationary bike I go faster, and I go for longer. I know I'm getting stronger. Each time I do those core exercises I feel those muscles. I know I'm getting stronger. My body is getting stronger. 

    My mind needs to come with it. I need to get up mentally and start taking control again. I feel weirdly passive. Uncaring. I've let go. I'm afraid. In this pause I am afraid. I am waiting. That's what I'm really doing. Simply waiting. I was like this before the first chemo too. 

    It seems like right now, at this moment I have gone from someone with stage 3 cancer - tumour more than five centimetres, and one lymph node positive - to, what? No cancer? Cancer free? I guess that was the plan. It seems so weird. Stage 3 to no cancer. And that's not really true even if I pass all the tests. I still live on the fault line. I will live on that fault now for the rest of my life. 

    I am behind the times. I was behind in getting how serious and debilitating this treatment was going to be. And now I'm behind in getting how well it seems to have worked. 

    Still radiation to get through. And still daily hormone suppression pills to get through, for ten more years. Realistically lets say, basically the rest of my life, at this stage it becomes a lifestyle for the rest of my life. 

    But at least now it appears like I might have a rest of my life that will be worth living, a life that’s satisfying and rewarding. I keep telling myself. 

    Dispatched: May 21

  • 20 May 2019 6:49 AM | Contact Me (Administrator)

    We sway together right now, death and I. We are like two preteens at a sock hop.  We don't really know what we are doing, neither one of us. The doctors and nurses and physiotherapists come along like chaperones with their measuring sticks to make sure that our torsos, the 'good bits' are at least six inches apart. The lights will come on. The music will stop and my death and I will each go our own way for a while. The next time the dance begins we will be more sophisticated. We'll both know more. 

    Monday morning of the long weekend. A holiday day. A bright sunny holiday day. And a wave of memories from my Facebook page. Last year I posted my window boxes all planted, along with the memorial box for Moose by the back window, plus the Bixie bike stand, plus the Portuguese parade. Five years ago I posted photos from a sunny day trip to the lilac forest in the Botanical Gardens. Six years ago my husband, brother-in-law and our scuba buddy friend were on their way to Truk Lagoon and I was getting ready for a trip to Victoria to hang out with my siblings. That was the three of us sibs trip. All good memories. This has been a good day over the years  

    And now? My husband and I took a day and went on a little excursion yesterday to take pictures of the bridge that the Mohawk ironworkers are helping to demolish there. The day was beautiful. We entered Cornwall itself through a sleazy part of town and I as I looked a the rundown houses I thought about what it must be like to be poor in a town like Cornwall. Somehow it seems easier to be poor in a big city, more nooks and crannies for poor people, more debris to live off of, and more anonymity, nobody needs to know you are from the poor part of town, you can clean up, hop a bus, go anywhere else and try out other life styles at least as far as walking around that different neighbourhood, enjoying a different park. But then we hit main street and drove along the water, there was a beautiful series of parks that run the whole length of the river and the city, and we started to pick up nice condo buildings overlooking the parks and the river and quaint main street shops that look like every other small town along the river. Cornwall is not so entirely sad after all. 

    We picked up some take out bbq chicken, one of my favourites, and then we had a picnic in one of the parks along the river. We found a spot at the edge of the water with a tippy table that created a bit of adventure for me. I had to climb over rocks and up and down a path with roots just waiting to trip you up. That was good for me. It was just us without a dog, I missed our old dog, but it was okay. And then, when my husband had his pictures we drove along the shore back towards the city. It was a lovely sunny day and it was fun to watch the street action in the small towns along the way. There was a coordinated big garage sale all along the route. I thought that is was probably the perfect way for an immigrant to get household items for cheap. But there were very few of them. Very few shoppers period. Lot's of sales but not that many people buying. 

    We stopped at the old locks where my husband used to go swimming when they first moved to the city from his northern small town. He was a teenager going to a strange high school. His dad used to take him out to the old locks to go swimming. Probably him and his childhood best friend who had also moved to the city that year. Friends since they were three years old. How they must have missed living right on Lake Superior and right in the middle of lake country. How they must have missed going swimming from those big sandy Lake Superior beaches, and the cottage life, swimming and fishing in all those lakes. My husband didn't say that. But I looked at the locks and thought they were interesting, but a small compensation for what they gave up moving to the city from the north country. He drove us past the golf course with a swimming pool where he worked as a life guard the summer he turned sixteen, grade ten, the same age as my granddaughter. He lived alone in a bunkhouse on the golf course that summer of being sixteen. He life guarded at the pool during the day. The older life guards took him out drinking, nobody asked his age, in the local bars at night. That was the year he started drinking. He had his bronze medallion, he was a scuba diver already, the next year he would be a scuba trainer. This was who my husband was back in his teen years. 

    I had to climb over a big railing to get to the old locks, we had to walk across the highway. That was good for me too. Climbing around. Being outside in the wilder world. Mentally and physically it was good for me. It was a reminder of why I do these exercises; stretching every day, range of motion for my arm and shoulder, and walking up and down Mont Royal every other day. The core exercises I've started to do. I'm exercising for real life, I'm in training to get my old real life back or start my next real life. In any case I am in training for real, out of the hospital, out of medical care real life. Uneven paths, obstacles to climb over or under. And yesterday was my first foray back into that world. We left the city. This is the first time I've left the city since I started treatment. 

    That, combined with the Facebook memories for this day have provided a pretty stark comparison between my old life and where I am at now. I am shocked at how far down I've gone. This is not the flu. This is not even years of having a bad back and coming back from that, though I guess that's the closest I've come to being set back this far. Pregnancy and childbirth were nothing compared to what has happened to my body during these cancer treatments. They were nothing compared to what has happened to my mind. It is mind blowing to see how easy and happy, healthy and energetic I was compared to this broken down wreck that I am now. Clawing my way back up again. And again. 

    Yes, I am getting tired. It wears you down. You claw your way back up, and you get knocked by down again. You claw your way back up. Over and over and over again. My baseline has grown lower and lower over these past seven months. I am a little further back each time. Sure my hair is growing back now, my eyelashes too. I can eat regular food again, I can go out in public. But I have stitches, and I have to work on an arm that doesn't reach it's old range of motion, I have stuff going on in my arm pits. I pick up less and less of the old work and life each time. I don't work anymore. I don't cook anymore. I barely get my plants watered now. I don't get housework done, I haven't cleaned the bathroom for two weeks now and it looks like it. I am reading. I am knitting again. I am still writing every day. I did go out to the country, just a little ways, yesterday and I walked on uneven ground, I climbed up and over a few things. I sat in the car for more than an hour. I held my pee. I was out in the world with my bald head and a big sun hat. 

    Frankly feeling this good is not that great. This good is pretty terrible compared to where I was last year on the May long weekend. I was on top of it. The conference was coming along well, we had raised good money, had good registrations, I was ready. The May long weekend was always my old conference deadline. I had most of the conference stuff in place by then. Some years that was when I got on the train and headed off to the location to start the final preparations. I gave myself a break for the long weekend. I was pretty much ready for the conference by then. It was the culmination of my really busy work season. 

    My life is much more quiet now. When I first told my old boss that I had cancer and would have to take a bit of time off before Christmas, I never imagined that I would be this beaten up at this time of year. I still thought I would be able to start working again right after Christmas, just a few weeks of light chemotherapy after that and  then I'd be good to go to keep on running the conference. 

    That was before I learned about 'accumulation'. That was before I really understood that the way they kill cancer is to nearly kill you. That death dance has to be that close or it doesn't work. They get as close to killing you as they can so they can kill the cancer. And it's not once. It's not one big thing that you have to get through and then you've survived. It's again, and again. And it's in different ways. First they mostly kill you this way, and then before you can recover completely from that, they try to kill you that way, and then before you can recover completely from that they try to kill you a whole other way. They are only giving me time to not die completely between treatments, they are not really giving me time to recover and live fully in between killings. There is a reason for this. They are not giving the cancer time to recover or mutate. They are throwing new kinds of death at it each time, they are giving as much death as they can before the treatment tips the rest of me into dying completely too. But they, we, all accept that parts of me will die too. Healthy parts of me will die. Each go round, it's not one big battle and you're down. It's a whole series of battles. They are not skirmishes either. They are all nuclear bombs dropped on my poor body. There are charred craters from each of them, there are craters that will never recover. There is damage, structural, chemical, radical damage that will always be there now and that can pose a danger to my life for the rest of my life. Chemical damage, structural damage, and radiation damage. All of it. 

    I did not really know any of this when I started. And I notice that we more experienced patients don't really tell the young women who are just starting their chemo about it either. Even though we know now. Even though we watch them go through their first few rounds of chemo saying this is not so bad, we still don't tell them. It will be bad. It will be so bad. Let them have this moment. It's the last moment like that they will ever have. Let them have their innocence. 

    My husband said that we are starting to look like an old couple. We were sitting waiting for our bbq chicken and he noticed our reflection in the glass. He said, 'We're starting to look like one of those old couples." I answered that we are one of those old couples, and he said, "I know, but we didn't used to look like it." He's got some grey in his hair now. His moustache and beard are grey. And I am a wreck. I am half killed. Three quarters killed. Puffy, fat, bald, dumpy. I said, "I have an excuse." I have an excuse to look old now. I am partly killed, I am much closer to death than I have ever been in my life. That's an excuse to look old. 

    I have learned an interesting thing. After sixty age becomes a more variable thing. How old you are depends on what is wrong with you at any given time. You are one age if you have chronic pain. You are another age if you have temporary pain. You are at another age if you have a new disability. These things can come and go. You can have chronic pain for a number of years, that turns into acute temporary pain, and disability, and you can recover from that, end up with a new joint and no pain, and only some disability. Your functional age goes up and down - it depends. It depends on what is happening with your body more than how many years you have under your belt. 

    This year, although I am only sixty-three I am close to death. So it's like I'm in my late eighties or nineties. Or even like I'm in my first few months of life. Either way, I am at that more fragile stage where things can tip easily and you can start to actually die. I feel that is how old I am this year. That does not mean that I won't get better, that does not mean that my hair won't grow back, my muscles get stronger, I'll lose this extra weight and be slim and fit again, that I won't have a vigorous and ambitious work and friends and family life again. Perhaps even by next year at this time. By this time next year I might be back to being a sixty year old again. Or even younger. Last year it was like I was still in my forties. I was slimmer, healthier. I was actually mentally, physically and financially stronger than I'd been twenty years ago when I was really in my forties. I was in good shape last year. I may be in good shape again next year. That is the thing that happens in your sixties. This age variability happens. 

    My Dad was an old man when he broke his tail bone. Right up until then he was like a man in his thirties, not his fifties whipping around the city on his bicycle, re-qualifying for his life guard certificate every year. Then he broke his tail bone in a bike crash and he became an old man for a while. Same thing when he had that brain stroke. Driving down the highway on his way to a canoe club practice, being young, and then bam, he was an old man again for a couple of years until he recovered from that and went back to being his real age. I see it now. I get it now. I didn’t get it then. My dad told me these things, and I watched him live through them when he was about the same age as I am now. I saw it, but I didn't get it. Now I get this variability of old age. I get that I can be going through an old lady stage right now, and that I am actually young enough that I can still come out of it, and go back to being this vital, healthy essentially middle-aged person again, for a while at least. My sister’s mother-in-law did that. She had cancer treatments in her early sixties. It set her back. And look at her now. She's going to be hundred years old this fall. She got another forty years of variable age after that. I saw that too. And I saw her ups and downs, the different ages she's been since then. But I didn't get it then. I still didn't get it. I only get it now. Now that I've started the variable age experience myself. Now I get it. 

    After sixty, around then, that is when you do start the dance with death. Sometimes it is a slow dance, and close. And sometimes it's a wild and free dance, and you would hardly know that you are dancing partners, but that dance with death does begin in earnest sometime around sixty. It doesn't mean you will die then. The process of the dance gives you time to get to know each other. You move in close and dance cheek to cheek for a bit, but then you can be at arms reach, jiving and laughing, finger tips barely touching. It can toss you up in the air, and dip you down. It might seem like you even get tossed free, and onto a full dance floor, full of potential mates, who's to know which one is your real partner. But it's death. And it's there. That is your date for this dance. That is the one you'll go home with when the music stops. You can dance with others in the meantime, you keep dancing, but you've met 'the one’. You know whatever opportunity comes along in the meantime, however much fun you have dancing with the others, in the end you're going to end up with 'the one' and that's who's taking you home.  

    Death and I are dancing closer right now. We are getting to know each other. We are finding our rhythm. We are learning to sense each other across the room. I feel like I could recognize death across the room now. I did not even see it before. Now I am dancing cheek to cheek. I know that. I feel like I am still leading though. The dance is still mine. But one day it will not be that way. One day death will start leading and then I can only follow. 

    No, I am not even leading. That is not true. That is why I feel like I am so close to death at this stage of treatment. We sway together right now, death and I. We are like two preteens at a sock hop. We don't really know what we are doing, neither one of us. The doctors and nurses and physiotherapists come along with their measuring sticks to make sure that our torsos , the 'good bits' are at least six inches apart. The lights will come on. The music will stop and death and I will each go our own way for a while. The next time we will be more sophisticated. We'll both know more. Will we be wearing low slung jeans with big belts, will we hook our belts together and grind our pelvises in ways that shock the 'chaperones'? Does it become a hunger, like sex? Does it become like that with death? In the end do you just want to find out what it's like? Can't stand the suspense anymore, let's just do it? Will it turn into one of those old fashioned dance marathons, hanging off each other and barely moving at the end, trying to simply stay upright and win the longevity sweepstakes, filling the onlookers with morbid horror. We shall see. 

    But I get it also, I get where you might just want to simply stop dancing. You get tired. Your get up and go, got up and went. I can see how you much just be, 'done'. C said she was just tired of it the last time I saw her. She was yellow and strained looking. No longer slim and beautiful. Just skinny. She said she was tired of fighting. She was done. She died within a couple of months. I knew that was the last time I would see her. I came home and looked in the mirror. I looked so pink. Pink and plump. Skinny is not always a good thing. I was strong. I had energy to spare for her. I could make a pie, walk it over to her house. When was that? Maybe five years ago? 

    I could walk that far now. I could even make a pie for her again if I wanted to. But I am tired now too. I wouldn't do that now. Only a few weeks ago I could not have walked that far.  But I have something that she didn't. I have optimism. I have no reason to believe that this treatment won't work. I have every reason to believe that it is working. And that if it doesn't get me completely free and clear of cancer for all the rest of my born days, that it will at least buy me a nice long reprieve. 

    We will know more in a couple of weeks. The third of June. Results will be in by then. It seems like it's going to be good news. So far it seems that way. And it feels that way too. I don't feel any additional bad shit happening in me. The first time I knew it was bad shit, and I knew which way it was going to go even as I waited for test results. This time I think it's going to be good news. 

    That is the moment I am in now. Another philosophical moment. Another true pause. I have things to do. I have to get myself better. I have to work this injury out as much as I can, heal as much as I can. Push the healing process with both exercise and rest as much as I can. But, also I am in a pause. Before we get too far into the part of the story we will know more. We will know more about what direction this is going to take, how much more fight we will have to do, how much more death I will have to take. Death dancer. That is me. I can't just fight death, I can't spit in it's face. Death is how I live now. I have to embrace it, I have to embrace it and let it kill the cancer as we dance. That is what I am doing right now. Dancing with death. Are we up to french kissing now? Past preteen, up to french kissing? Perhaps. I can't stop dancing until the doctors blow the whistle. I can't stop dancing until they say it's okay to stop. No matter how tired I get. Keep dancing. 

    What a f*#*ing weird, unnatural thing to do. No wonder it makes us cancer patients so crazy. 

    Yes I'm slightly afraid of how drunk my brother and I will get together when he gets here. We may both go over the edge, fall right off the stage over that! Lol. 

    A minor milestone this morning. I took my first lying back in the tub bath. I didn't lie back and soak, but I did lie back and rinse off a bit, and swoosh around. Now I know I can do it physically, I can maneuver around lying back, getting back up, lying down again, no problem. And, probably partially as a consequence of being in the water more - two of the tapes came off. I helped them a bit. I confess. They were half way off already and I just gently pulled them the rest of the way. The stitches underneath have all healed, just bits of dried blood left underneath where one of the tapes used to be. My armpit felt better today and I was more able to gently wash it out and give it a kind, very gentle massage, the tape there is really much more ready to let go, and the skin underneath it is a bit more red, I think it will be better when that tape comes off and things can dry out under there. I think it will all happen soon now. The tape is pretty much ready, the stitches are pretty much healed and now that I've started to sit in the tub more I think the tape will drop off quickly in the next two or three days. A surgery milestone at just over two weeks, I suspect it will be all dropped off by three weeks. Which sounds like around the right balance between helping to hold things together and flat and make for a better scar, and not getting too cruddy. 

    I remind myself that in fact I am still only in the two week range, it will only be three weeks on Friday. Don't rush it too much. Just take it easy. Full range of motion may not come back for four to six weeks. And that’s okay. 

    Dispatched: May 20

  • 19 May 2019 6:29 AM | Contact Me (Administrator)

    I have been enjoying all of these things; a return to fresh raw fruits and vegetables, a return to soft cheeses, a return to a glass of wine, a return to walking on the mountain, a return to being out in public and crowded spaces. A return to a real daily exercise routine.  And now, a return to travel, we’re going to leave the city today!

    Sunday morning. The skies have cleared but it's still a cool day. And It's a mottled grey and white cloud morning, tinged with pink dawn. It's 5:47am. 

    I've just read an article about two gay guys who tried to start a commune and nobody came, read about Jane Hawking's viewpoint on The Theory of Everything the movie, and also her marriage to Stephen and life as a caregiver to someone with a chronic disabling disease. I had one cup of coffee and now I'm on cup two. I remembered the last two articles I read, but I had to look up the first one, the Jane Hawking one. I still have these blanks in my memory, and yes, it is disconcerting to forget an entire article that you just finished reading. But I knew how to get it back into my memory, I just had to look at the email page where I found the article in the first place and the whole thing came back to me instantly. What do I think? Chemo brain, still? Could be. Stress, still? Could be. It could be simply that I have too much on my mind, that I'm stressed by all that I'm going through, all the changes in my body, and in my life, and in my role relative to other people. I am both more and less independent. 

    That part is interesting. I am more dependent on my husband. He drives me places, he takes care of the house, does the cooking, takes out the garbage, keeps a roof over our heads. But I am also more independent. Right now I am making my living simply off of being sick. That is my job now. I don't owe anyone else any of my time. My time is mine. That makes me feel incredibly independent. I like it. I don't make much money like this, and I'm not doing that much with my time right now, I've really slowed down so that it actually is mainly just taking care of my own body and my own mind. But I think important things are happening underneath the surface. I do feel a bit like a caterpillar in a coccoon being transformed. It seems quiet and like not much is happening, but a lot is going on underneath, fundamental changes are happening. And yes, I do feel more independent. Time. It is the most precious thing there is.  I don't have much money compared to when I was working, but now I do have more time. But also not so much time in a meaningful way because I don't have energy. Time is worthless if you don't have the energy to spend when you have it. 

    And I am still doing the basics. I am taking care of my body, and more robustly now, I'm being supported and pushed towards a more robust physical life again. This is where I start to be hard nosed about taking care of me. It is a bit weird to be out exercising every day, walking up the mountain or riding the stationary bike, and not cooking or taking out the garbage. I could do these things, but my husband wants to keep control of those household chores. So I let him. 

    Yesterday I worked out a monthly budget for the disability income. It's not so great. My goal for the moment is to live on this income though. No choice, that’s all I have.  

    I meet the radiation guy this coming Thursday. My medical life will all start happening again pretty fast now. The reprieve will soon be over. 

    Yesterday was a mountain walk day for me. And I did walk a bit further up the mountain before I took the path down again. I extended my reach in that way. It felt good. And yes, I am surprised at how fast that recovery going now that the chemo is clearly really starting to wear off. My hair is growing like crazy now, faster than it ever grew before. My nails are growing. My eyelashes and eyebrows, did I mention that they are coming in black? It was nice to walk on the mountain on a soft green and grey morning, people were out and about enough so that I felt safe the whole time, but not so many people that I felt crowded. I did do my little walking mediation. It was good. 

    I didn't get so far on the house work. I took care of my bottle garden. I still need to do the flowers and the living room plants. I did not get far with my house cleaning. No vacuuming, no bathroom cleaning, a bit of tidy up on the desk in my office. That's about it. The mountain walk took time. The whole bath and wash the stitches and try to start washing off the adhesive from the first dressing took time. I had a deep, long nap that took time. I also picked up the knitting and I got that sleeve going past the cuff and into the main body of the sleeve figuring out and doing the regular increases, that took time too. That took the whole day. The house still needs work. Oh well. 

    Yesterday was we went to a little concert at a cafe up the street. The plan was that my husband and I would go there for supper and listen to the music. It wasn't great, but it wasn't bad either. The place was packed when we got there. We had trouble even finding chairs to sit on, much less a table. No beer, no food. Just my husband and I sitting on high stools by the counter. So that was a disappointment right away, I was looking forward to a pub meal out and a beer at the least. And I was hungry. And I had to sit and watch all this food go by. But then I noticed that the food wasn't that great. People weren't finishing it. They took their first few mouthfuls and stopped eating, they sorta had to make themselves finish the rest of it, and most did not finish. And the musician was not that great. She forgot lines, and where she was in the music, she forgot the lines to her own songs. And her voice as not great either. The audience was pretty much all friends and family of the band. These people made up the entire fifty people who packed the little cafe. The audience cheered no matter how bad it was. That's fine. The musician lost her college job this year. She's surviving on what her dad gives her and what little money she makes teaching music. There were no students, zero students in the audience. I'm used to teacher friends who always have layers of students around them whenever they do anything public. Students who love them and become part of their lives. There were old friends, but no young college-aged students. And that was the room. I was hungry and grumpy. 

    We left after the first set.  Me and my husband out on the town on a Saturday night.  

    So here is where I am on this increasingly sunny Sunday morning. George wants to go to Cornwall today. It is a nice day for a drive out into the countryside. We'll have a picnic. He'll look at the bridge. It's work for him, part of the tv series. Cornwall is not that far off, we'll be there and back fairly quickly. Yes, it will be good to get out of town. Just the idea of it. Just to leave the city. I have been enjoying all of these things; a return to fresh raw fruits and vegetables, a return to soft cheeses, a return to a bit of wine, a return to walking on the mountain, a return to being out in public and crowded public spaces. A return to some kind of daily exercise routine. A return to travel coming up today, leave the city for part of the day. A return to swimming at the Y, coming soon. I hope. 

    A return to reading has already happened, in full force. And I've started knitting again too. It felt good to knit last night as we watched a movie. Us together, me knitting. Like old times. 

    We may end up baby sitting Luna the dog. Her person has asked if we will look after Luna if they go away this summer. We might have a part time dog. That would be fine. Luna seems like a very nice dog. Small, part poodle part lab. 

    Getting hungry, going to get some breakfast and start my day. Today won't be a chance to catch up on housework after all. But it will be nice to have an out in the country day, that'll be nice. It will be nice to hit the highway and just have the open road in front of us again. 

    Dispatched: May 19

  • 18 May 2019 5:59 AM | Contact Me (Administrator)

    My new routine of stationary bike, core strength exercises and range of motion exercises is way ahead of where I was last month. I feel like I'm pushing myself now, not just resting and getting better - instead I am actively getting better. I like the feeling of that, even if all this wasn't  actually helping,  it would still make me feel better just to have this sense of control over my own life and my own body. 

    Saturday morning.  I woke up from a nightmare where I was alone in a swimming pool filled with ice and floating olives. What the heck? But new people started to show up in the pool and I started to make friends. They were in the same unreal place as me, but they were comfortable there. They were accepting. They accepted me without question. I was one of them. That's when I woke up. I woke up still carrying that lost and confused feeling. I got up, walked around a bit because my back was sore.  I went back to bed, lay in bed feeling the lovely silky sheets and dozed until 5 am when it seemed okay to get up and have a cup of coffee. 

    So here I am, on this quiet morning, a whole non-medical free day in front of me. Nothing more important to do than recover, simply getting better and stronger each day, that's my job right now. That's my only job. Everything else is bonus. I have never lived like this before in my life. Things are happening around me, things that used to consume me, but I don't care. I let them go right on by. Stuff is happening with the new tv series. The directors are coming on board, they are getting ready to shoot their episodes we, no - the production company, is going into production. My husband tells me what happens and it goes in one ear and out the other. Stuff is happening with my old office job, the conference partner is flipping out, she's going wild telling my replacement that she needs to get her shit together with the social media and start tweeting twice a day, maybe they should cancel the conference because they don't have enough registrants, every board member needs to contact at least ten people personally and beg them to go to the conference. She sends six emails like that at once, and then takes off for a week. My poor replacement. I'm glad it's not me. And that's as much as I feel right now. I can watch this go by and not get upset or stressed. I'm letting it all just roll on by. It's not my job right now. My job is getting better, getting stronger, getting ready to make it through the radiation. And/or whatever else might happen. My priorities and perspective have really changed. Work is not even that much of a distraction anymore. 

    When I listen to the young women who are just starting their chemo saying things like, 'what, my eyebrows and eyelashes might fall out too?' being horrified, and nobody, not one of us has the heart to tell them that will be the least of it, by the time that happens they will be so miserable in so many other ways that they will barely notice their missing eyebrows and eyelashes, I think about how that is where I was back then, back at the beginning last fall. Only I wasn't thinking about my eyebrows so much. I was thinking about my work. I didn't know, couldn't believe that I would not be able to work at all. I didn't know, couldn't imagine that I would be so miserable that, that would be the least of my worries. I loved my work. But here I am now, I guess I could actually be picking up more of my work load again, but I'm not. I don't care. I know that I have a bigger job to do. I'm fighting for the rest of my life right now. And oddly, it's not actually the cancer I'm fighting, it's the side effects of these various stages of treatments. It’s the treatments not the cancer that are knocking me back. First the chemo. Then the surgery. And coming up - radiation. 

    The cancer itself has never caused me any pain or discomfort. All of this is a leap of faith on my part, that the cancer would have grown and taken over my body and killed me if left unchecked, that the chemistry and radiation they are applying to my body will stop something that ‘might have happened in the future’ and so are saving me from an eventual, not clearly present now, doom. In a way the surgery is the only thing that makes sense to my human scale understanding of my body. It’s like taking removing a sliver with a tweezer. There is something satisfyingly concrete and ‘not invisible’ about it. It happens in the present and that’s it. It’s done. 

    Side effects from radiation can occur months or even years after treatment. 

    Yesterday I did do my first day of the exercise program that the physiotherapist gave me. It was my first time back on the stationary bike. It felt good. It felt weird. My iPod was dead as a doornail of course, so I ended up biking my ten minutes to Whitehorse on my phone. And that turned into fifteen minutes, three songs. And it felt good to be biking to music again. It was nice new music at a good pace for me. But I didn't over do it, those three songs, fifteen minutes was fine. Then I did the core exercises, two rounds of ten repetitions. You do one round of ten reps all the way through, and then go again. I can go to up to fifteen reps, three times. One round of ten was fine for now. I can feel it in my butt muscles this morning. Every other day, she told me to do these only every other day, not every day. So I'm off today. But I can do the range of motion exercise every day. I actually did them twice yesterday, once in the morning, and once later in the day after the core exercises. They are really helping me. I am getting more and more comfortable all the time, being able to move normally. And I'm starting to feel like I'm ready for the tape to start coming off, the stitches to start coming out, and that phase of healing to be over. Very close to time to sitting in the bathtub and having more of a soak and a wash, letting the tape gradually unglue itself. Right on schedule. This is all good. 

    Yesterday I did some financial, taking care of my life errands. I got my blood pressure pills refilled. I walked up to the post office. I walked back down to the bank, stopped in at the magazine store and bought a new cooking magazine that I don't need. Did my exercises, had another long nap. I'm back to napping a lot and sleeping long too. I think it's because I'm regrowing so much of my body right now. Just looking at the way hair is popping up all over my arms, and my head, I go wow, just that is a lot of new stuff for my old body to be doing, never mind adding in that my gut lining is doing the same thing invisibly, and my nails, and my nerves, and all the breast and armpit tissue that was damaged by the surgery, regrowing. That lymph system is busy doing it's work around, making those new connections, and the breast tissue, and the skin. All of it. No wonder I sleep a lot. My poor body has a lot to do. It's busy while I sleep. And then when I'm awake I try to help it. I walk, I exercise as directed. I feed myself lot's of protein and still plenty of fluids. Milk, drinking Kefir and eating yoghurt to help my gut along. Whew. It's a big job. My new job. Getting healthy, getting stronger. It's a big job. I'm in my 60s. We're not built for this kind of growth and regrowth at this age. My poor body has had to change gears, and ramp up in this whole new way thanks to the way the cancer treatments have killed so much of me. 

    And there is more to come. I am in training for more to come. I kinda like the idea of being 'in training' for radiation. It gives me some sense of control. I liked my little get up, have a bath, get dressed, go outside, walking ritual too. It gave me a sense of control. I tried hard to always be able to get up, bath myself, dress myself, feed myself, and simply go outside and walk - if only to the neighbours tree and back. It was an important sense of control and routine. I still had that much control in my life even if I had to let everything else go. 

    My new routine of stationary bike, core strength exercises and range of motion exercises is way ahead of where I was back then. It's far behind where I was when I started treatment. But it's way ahead of where I was during the winter. I feel good about that. I feel like I'm pushing myself now, not just resting and getting better, perhaps deteriorating from entropy - instead I am actively getting better. Pushing myself to get better and be better. I like that. I like the feeling of that, even if it weren't true, even if I didn't believe that this exercise and routine makes me stronger and better able to handle what's happening to me, it would still make me feel better just to have this sense of control over my own life and my own body. And ultimately my own health. Even though, at this moment in my personal history I have implicitly agreed to share that control with my doctors and nurses. I do still try to do my bit. 

    Today will be the mountain walk. As much as I can do now. Which is far more than I could do even when I first went up with my sister only a couple of weeks ago. I have started to do the walking meditation too. So my life is coming back to me. And it's interesting to see the things that I never gave up, and the things that came back first, the last things I lost and the first things I got back. 

    I never gave up writing. I never gave up coffee. I never gave up people. I never gave up eating. I never gave up exercise. I never gave up me, even when I wasn't so sure who 'me' was anymore for a while there.

    I did give up knitting. I did give up reading. I did give up gardening. I did give up housework. I did give up cooking. I did give up baking. I did give up work. I did give up deadlines. 

    I am picking up some of those things again now, as I have a bit more 'good' energy time, but it's not as much as I thought I would have because I am spending more time on exercise now. My twenty minute daily walks are now an hour walk on the mountain. My twenty daily walks are now forty minutes of stationary bike and floor exercises. My morning bath takes longer because I have to be so careful of slipping, and careful of washing around the sore areas under my arms and boobs, still gently approaching them, dealing with them in that small way every day. Touching them, reassuring them as I wash very gently, with very gentle soap. And then I book myself one 'thing' to do. Yesterday it was the errands and bills. I didn't knit, but I did read a bit. And that was about it. That was all I could do. 

    Today it will be light housework. Some plant care first, and some light, only essential housework. A mountain walk on this lovely soft day. That's on my schedule too. And a walking meditation when I get up into the trees. That too. And then perhaps knitting. Though I've dropped the idea of trying to finish this sweater in time for granddaughter’s birthday. She will be happier if I just send her money anyway. Then I'll just keep gently working on the sweater, doing the best job I can, and bring it with me the next time I see her, and we can see about fitting it, do some personal fitting with it, a bit of re-knitting to make it work better, so she feels like it is a personal design done for her. That will be more fun for both of us. 

    Dispatched: May 18 

  • 17 May 2019 6:28 AM | Contact Me (Administrator)

    Life is too short. But I have all day in the meantime. 

    Friday morning. Another perfect early summer day for me. Yippee! And here I am, a woman with an exercise schedule! A routine to do, my life coming back to me, yippee to that too! 

    Yesterday I went to my first physiotherapy session at the Wellness Centre. And it was great. I got my own personal physiotherapist/exercise coach/personal trainer who is an specialist in lymphedemia, oncology and breast cancer recovery. This is so fantastic! I love it. And I also love it because I can see how all those years of regular exercise have paid off in my life. I may not be slim and beautiful, fit looking, but I am none the less in good shape and it's paid off big time for me during this cancer treatment. And it continues to pay off. My range of motion is still good. Even after the surgery. And I am in good shape to do the exercises she provided, I have enough core strength already to do them correctly, and I will continue to improve as I do the exercises as 'prescribed'. I love it. 

    I love having new, never tried exercises to do, this challenges my body in some nice ways, and also my mind body connection too. That is great, it feels great. I have range of motion exercises that I can do with a broom stick, that I can do every day, and then this 'circuit' of lower body exercises and core body exercises that I should do every other day. I feel like somebody again. This is  me. I love my exercise routines. And it fits my regular exercise lifestyle, I can do everything right here, back at home. Ride on my stationary bike for 10 minutes or more, up to half an hour. Then the exercise circuit in my bedroom in the old yoga/weights area. Alternating that with the mountain walk, increasing distance on that. Excellent. I am very happy about that. And it was a beautiful summer day out at the Wellness Centre. And everybody was very nice. Once again, a good session of information and support has wiped out the bad taste of a really crappy support group session. 

    Though there was a funny moment in reception. They have these very old ladies who volunteer at the reception desk. They get all dressed up, make-up, hairdos, and nails painted. But they are easily confused. They can't really handle a receptionist job, which is far trickier than it looks because you have to juggle lot's of random stuff coming at you in spurts and lulls. These old ladies can't do it. They keep on dropping the ball. I was there 15 mins early so I thought that I would buy their cancer cook book and apron - twenty bucks, contribute to the Wellness Centre as well as having a new cookbook and apron. I asked the receptionist, and she got up and started to get them for me, but someone came up, and she asked her a question about something else and the sweet, overdressed little old lady dropped my cookbook and apron ball completely. I gave up, another time. I know it's very hard to get those ladies back on track, and that something else is likely to interrupt and make them drop the ball again before you can achieve anything. Easier to just give up and wait for another day when someone younger is at the desk. I am learning that place. I am feeling more at home there now, I feel that way even with the regular group meeting nightmares. 

    But I also got a hard reminder that this is not all done yesterday too. Even though I feel better, even though I am recovering nicely from both the chemo and the surgery. The appointment for my CT scan came through while I was gone. In a couple of weeks, we'll have the results in time for my June appointments with Dr. B and Dr. P. We'll know a lot then, the pathology from the tumour, the results of the lymph nodes, and the results of a CT scan. Plus my blood test results too. We will know a lot after that meeting. Decisions will be discussed and made. We will find out if I just keep going through treatment as planned, or if there is more to deal with and new treatment things will have to happen. Or if there will be only slight changes of plans. My husband thinks all this is cut and dried. But I know better. I know that I've been lucky so far. I know that six month cancer plans can start out fine and then turn into 3 year nightmares, with long stays in hospital. 

    And the other part of my hard reminder had to to with the physiotherapst and what she said about the radiation (radio therapy is what they call it, I guess radiation sounds a bit too scary, but radio therapy sounds like being forced to listen to radio self-help advice call in shows to me, ha, ha) I know more about what to expect now. 

    She gave me this customized set of exercises to do now, so I can start to get in shape for the radio therapy. What? When I get the radiation schedule then we'll know our deadlines and we can up the ante on the exercise program. What? First step will be to get my range of motion right up there, arms over my head, because sometimes they will need you to get into quite awkward positions for the radio therapy. And you'll need to hold those position for fairly long periods of time, hopefully without pain, or cramping. That's why we want to get that range of motion back before radiation starts. Hmm. Also, “once radiation starts, and all during the time that you're getting radiation, we will want you to be doing weights. Increasing your exercise levels. Weight exercises increase blood flow through the muscles, and that reduces scaring and damage from the radiation. You need to be doing those weight exercises during the radiation treatments and then you will come out of them with less damage.” I did not know any of that. But it makes perfect sense to me. 

    The radiation will be like a burn to my boob and armpits. I can see where I could get burn scars or damage in all the layers of tissue that get radiated, not just the top skin layer. And I understand perfectly the idea that, good blood, and circulating that good blood is the best way to deal with any injury like that. Take away the bad stuff, the dead cell debris and bring in the good stuff, oxygen/energy and fresh supplies to build new cells. And then add the extra muscle movement/pumping action to break up scar tissue as it forms. More debris to take away, but really good to keep breaking it up and taking it away as it forms. I get all of that. Now I am starting to feel ready to face this new unknown treatment. Most people say the radiation is not so bad. Even if like my brother they are not specially prepared. So I'm not so afraid of this. But I am glad that I feel like I know more, and will be better prepared. 

    And I thought about my brother and how he has to do these stretching exercises in order to put his socks on. I bet that is from the radiation. Scar tissue tightening those muscles that he needs to bend. His life would probably improve if he had a phsyio  session or two to deal with it, and if they then gave him the right exercises to do for follow up. 

    Yes, I am glad I'm going for it, getting all the services I can, making use of these resources. And yes, later on I will give back, or forward, somehow, if I can. 

    In the meantime, the story is getting through this, getting as better as I can from the treatments so far. I love the Victorian sound of that, treatments. That era made a whole romance out of illness and ‘taking the treatments’. Consumption, not cancer. Cancer was still shameful in those days, not romantic at all.

    That's my job for now, training for radiation. And it's a bigger job than I imagined. It will take more effort. I have an actual exercise schedule to maintain now. On top of all the napping and relaxing that I have to do already. Ha, ha 

    Our scuba friends are signing up for another Little Cayman trip next year. You have to sign up now. I can’t do that.  I'm not even through treatment yet. I don't know what will happen in a year. I can’t commit to something that scheduled and that expensive until I am out treatment and have at least my first all clear cancer report, come back and see us in three months. The first year is the most dangerous for a recurrence or discovery of new cancer. So I'm not being unreasonable in this. Yes, you need to start making plans for your after treatment life, but also you can’t really make plans because the outcome is always uncertain for that first while, that first year at least. 

    Here is the other milestone from yesterday. I am wearing a t-shirt, not even a sleeveless shell, an actual short sleeved t-shirt. So, at the two week anniversary I am starting to get back into my regular clothes already. It's a loose, short sleeved, too big t, but that's fine. It's a start. We can go forward from here into more of my clothes. My wardrobe choices can keep on expanding from here. 

    And so, today. I have a whole day - just to take care of me. And this is a long weekend. My husband wants to go for a drive in the country. And then it turned into let's go to Cornwall and look at that bridge. Hmm. Yes, it would be nice to get out of the city, it would be nice to walk along the river for a bit. It would be good for my husband and I to have a little excursion. It would be fun if we could meet up with our scuba buddies for lunch somewhere halfway. That might be fun. We'll see what can happen with that. 

    And in the meantime, I have today. And it's Friday, and it's a long weekend. And the weather is nice. Not too hot, not too cold. Bit of sun and cloud. Just the way I like it. 

    I have an exercise schedule. I should do my new exercise schedule while it's still fresh in my mind. 

    I have some personal, 'office' work to do. I cheque to deposit, Yay! And a drivers license to pay, and life insurance to pay. So, that'll be a little walk up to the bank. My old Friday finances routine. That'll feel good. I do feel a bit smug because those planning things I did, the disability insurance has paid off. I am financially okay now. For the time being. I am surviving even without being able to work. I feel more calm and relaxed on account of that too. 

    And I can knit. And I can have a glass of wine spritzer if I like. It can be something like a real, old fashioned Friday for me. I used to go places, I used to take Friday afternoon off and go to the library, or the botanical gardens. I'm not quite ready today. But I'm getting there. I'm thinking maybe next Friday. I'm thinking maybe next Friday I'll start to ride the public transit again. And I think I might plan to go either to the botanical gardens and walk around enjoying the lilac forest, or I'll go to the library and have one of my old library afternoons. Either one would be nice. I could stop and get new nail polish on my way home from the library. I think it will depend on the weather that day which adventure I pick. 

    For today it will be simpler. The 'errand' walk up to the post office and bank. Pay my bills. Do my new exercise routine on my own for the first real time. Have a nap. Knit. Read. Perhaps a glass of wine and appetizers in the early evening. Watch tv and knit tonight? Movie night with my husband. 

    Saturday will be some housework, such as I can do without bugging the arm too much. Tidy, I think it needs a sweep and vacuum. But I’m not supposed to vacuum for six weeks. Water the plants. 

    Life is too short. But I have all day in the meantime. 

    Dispatched: May 17

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