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Cancer Daily Dispatches

A personal daily diary of successful cancer treatment.

Welcome to the story of my cancer journey

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

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

June 15, Saturday

Epilogue


  • 5 Jun 2019 6:27 AM | Contact Me (Administrator)


    Yes, I am disappointed. I was hoping to know something more today. The truth is still what it is, nothing has actually changed. But we don't know what that truth is yet. That is all that is different. We were going to know today, and now that won’t happen.

    This was going to be the day. But now it's not the day.  Dr. B's nurse called yesterday, the pathology is not done yet so there is not point in seeing him tomorrow.  She rescheduled the appointment for next Tuesday, but asked me to call on Friday to check and see if the results are in, so next Tuesday is not really a firm date and time either. Not today. Next Tuesday. Maybe. 

    So. Where does that leave me? A bit more time in pause/stall. A bit of extra work to do to. I need to call Dr. P's nurse this morning to see if I can reschedule him for next week too. Probably not on the same day, but that's okay with me if it's okay with them. Sigh. 

    I was hoping to know today. I was hoping to head out to Camp Comfort on Friday with my husband spend the weekend there, and then maybe get left there for the following week on my own and have my husband come and pick me up the next weekend. I was planning for it as a mini holiday for me. But that's not happening now. If T hasn't rented the cottage it can still be a weekend excursion. We could still go out on Friday and come back on Monday, or even Sunday. At least it would be a weekend away. Soon the Cottage will be rented most of the time and I will have missed the window. 

    Anyways. Such is life. I will deal with it as best I can.

    Yes, I am disappointed. I was hoping to know something more today. The truth is still what it is, nothing has actually changed. But we don't know what that truth is yet. That is all that is different. 

    I had a moment of worry. Perhaps they found something and they need more time to talk about it? But no, the receptionist saw that it wasn't available on my file, it's just not available. Perhaps they found something 'inconclusive' again this time and had to recheck it? Maybe. But just as likely they have a backlog and it took longer. Just as likely that Dr. B took out a lot of tissue and it just takes longer to go through it all to make sure there are no live cancer cells, and if there are, to determine what they like to eat, how they like to grow, if they are the same as the ones from the biopsy or if they have mutated again. All of that takes time. Just the simple pathology on a large amount of tissue, looking for single cells. That takes time. So. No. I'm not going there. I’m not going to imagine what they are doing. I’m not going to worry. They had always thought that the pathology might not be ready on time, and had asked me to call several days ahead to be sure. So. This doesn't mean anything really. It was part of what was to be expected. And even the new time, she asked me call again on Friday. If it's not ready then, they'll postpone again. So. We just don't know. Nobody knows. The lab doesn't even know themselves. I suspect that really, mostly what all of this is going to tell us affects the radiation program, but probably not anything else. The rest will go on as normal. I don't know. I'm only guessing. It's hard not to know. 

    But. Today is a beautiful day. It's going to be sunny and 20 degrees. Room temperature. My kind of day. And today is mountain walk day on my schedule. Nice. I will take that walk, and I'm going to go for an extra loop today too. What the heck. I think I'm up there now and it will be nice to enjoy it longer too. That's the big project for this morning. And if I don't have to see Dr. P either then I'll have the whole day off. And I should enjoy it. And maybe even get a few things done. My bottle garden is getting sad looking. I should empty it out and clean it up, do the once every six months super clean of the whole system. I won't look at putting anything new in there for now. But I can do that clean up. My arm is probably okay to do it now. 

    That is a big reason why I haven't been getting into the housekeeping projects. My arm was still iffy. And I didn't want to get into anything, get keen and enthusiastic and forget, and over work that arm, and trigger lymphedema. I pretty much have the range of motion back. It's pretty much there. And I am gently working on the strength exercises now too, but strength wise it's not all the way back. Still working on that and a bit afraid to over do it. 

    Today. I've done my range of motion exercises, and eaten breakfast, taken my blood pressure pill and the vitamin D, 1,000 pill. Getting ready for a bath and get dressed. Mountain walk next. Trip to the post office. 

    And I did rebook my appointments. Dr. P will be on June 17th. You see how things back up now. On account of the pathology report. Deciding on whether I want to fill out the medical report myself and get Dr. B to do it earlier. Or perhaps Dr. M? Will June 17th be too late. The day of the disability payment is June 27th. If I did it on the 17th, and faxed it in right away I suspect it will be okay. 

    And maybe the weekend, and perhaps even a whole week at Camp Comfort might work out for me after all. If the pathology report is still to ready and the Tuesday appointment gets delayed again. And really, is there a big rush? There is a woman sitting in our support group with known cancer cells in her mastectomy scar, and they are waiting until she's ready for the reconstruction and they will just remove them then. So. 

    Yes, it would be nice for me to have a week off in the country if I can get it, even if I will have to be all alone for it. I'm strong enough. Be prepared a bit. Bring things to do. My grey sweater project, the granddaughter sweater. The new vest' project. Books to read. A writing project to work on. That would be good. Maybe it can still happen. Maybe something good can come from this delay. 

    Dispatched: June 5

  • 4 Jun 2019 5:58 AM | Contact Me (Administrator)


    For me this is very similar to the day before surgery. But bigger. I am more afraid now than I was the day before surgery. I know from experience how small the day you get the medical news can seem. What they know. What they want to do next. And also how significant that news really is. It can destroy your life as you know it. So, yes, I am more afraid now than I was last fall when I was first diagnosed. 

    Tuesday morning. Grey and rainy. Chilly. I'm wearing the Traveling Sweater that my sister made for me because it’s like wrapping a warm blanket around yourself, and grey flannelette pyjama pants with fleece slippers, all curled up in my chair. Cozy and just right. I know people are unhappy about this cool and rainy weather, but I'm loving it. One day less of hot humidity. Life is good right now. In this moment. 

    My husband and I both miss Luna. Her person came and picked her up yesterday. Luna was very happy to see her person, jumping up all over her. Turns out that Luna is only 4 years old. She seemed older to us on account of her bits of white hair in the black, and her calm demeanour. She is a calm dog. My husband and I had a joint moment last night where he came in and said to me, “I miss Luna already, I expected to see her wagging her tail at me as I came in the door and she wasn't there.” I agreed and told him about how I'd thrown a piece of ham gristle onto the floor because I expected her food dish to be there. How quickly we fell back into the dog life. And how nice it was with a calm, already trained dog like Luna. 

    The last morning she really got her confidence. She started to take toys out of the toy box on her own and roll the balls around on the floor. I got down on my knees and played the sneaky/tension game with her. She got it pretty quickly, gave me a lot of expressive eyebrow action and we had a good time playing together. After that she did walk around the house with a bit more swagger, like she owned the joint, like she belonged here and felt confident. Play. The power of play. My husband wins them over with his caregiving abilities. He is the one who walks them, and he is the one who feeds them. And that's important. I let him be pack leader. I win them over with play. And physical affection. Baby talk. Well both my husband and I do baby talk. And so it was nice for us. Nice for us to have a dog for a while. And it will be nice for us to have her for a whole month later this summer too. The weekend trial visit worked out well for everybody.

    Yesterday was an on the phone day for me. I had a nice, long phone call with the person who is going to come up with a business plan for the office job conference. We clicked. She's a professional clicker, so maybe we didn't really click, but I did try to give her good information. I want to help her make a good, realistic business plan. Of course I am thrilled that someone else is taking an interest in fundraising. She may be doing it for herself. She may have her eye on my job. And who knows, if this goes badly for me cancer wise, she may be the best person to take on my job from here too. I gave her such insight as I have into the office job organization. We talked for more than an hour. She wants to talk to me again this morning. 

    So I'll be on the phone again this morning. My old work life. Almost a bit of a hand off it goes that way. But also, perhaps it will be really fun if we end up working together. It might really improve my office job life if I go back to it. Things that won't be known for a while. 

    And I gave my friend D a call. We've been watching weather reports from Texas and my husband has been telling me to call them because he's worried about them getting flooded out. I've been telling him that Texas is a big state, not like the little ones that we drive through on our way to Baltimore, but yesterday they were talking about Houston, and so that is closer. And I did call D. It was a long phone call. It was like my old buddy L Skype calls. It was a project for the whole evening. We talked and talked, and we laughed. And it was fun. Partly she is lonely. She is in a new city and her husband works ten hour shifts, and then he gets 4 days off. When he's doing his ten hour shifts she's lonely even though she's done all the right things, the Rotary Club, the church group, the Daughters of the Empire. She's joined up. She gets involved and tries it out. All of it. She keeps busy. But most of her new friends are well into in their seventy’s, and she's still only in her sixties. And she doesn't have anybody who's known her for a long time, who has known her through the ups and downs. So it was good for her to have a long chat with an old friend. And it was good for me too. 

    I realized that the uniting quality of my friends, the people I choose to have in my life, choose family is the way they face reality in such an unflinching way. They are smart and they are real. They are a step away from, polite covering things up,making nice pretending everything is good even when it is not. That is what I like in a friend. It was refreshing to talk with D. She was head on and straight about the cancer. Are you all skinny and pale? Did you lose a lot of weight? She was relieved when I told her I was plump and pink. She brother got skinny and yellow. It was hard to see him. Mentally, for my mental health I need my friends like D and L who are straight up and real. I need that. The look on L’s face the first time he saw me without hair, “You knew it was going to happen, you were expecting it, but still it’s a shock to see you like this.” I need that kind of honesty in my life. I'm lucky. I have it in my friends. 

    I was supposed to do laundry yesterday, but with all the phone calls I forgot all about it. And I didn't care. I can do it today. Not the end of the world. 

    I did do my mountain walk yesterday. And the two rounds of range of motion exercises, and the good bath, and real clothes, and a nap. I knit a bit. And I read a few chapters in the gut book, which is turning out to be an easy read, and quite compelling actually. It's basic info, but also the latest info on how the gut works and each chapter has enough new info that I didn't know that it's actually turned into a bit of a page turner, even for me, someone who doesn't have any gut issues. 

    Today is going to be the exercise program. Range of motion exercises times two. Laundry. Phone call with the business plan lady for my office job. Nap. And whatever puttering I feel like in between. Knitting, reading. Whatever. My last day of not knowing. 

    For me this is very similar to the day before surgery. But bigger. I am more afraid now than I was the day before surgery. I know how small the day you get the information and the news of what will happen next can seem. And also how significant it really is. So, yes, I am as afraid now and maybe more afraid as I was last fall when I was first diagnosed. 

    I remember those last days of not knowing. I remember spending time at my son’s. I remember doing all the cleaning up, the pantry, the windows, the stairway. Big seasonal housekeeping jobs because I knew I was going to be trapped here, and that I might be unwell and trapped and I'd just feel better if I was ahead on that housecleaning. And I did feel better. And actually I'm still happy that I took two or three days and cleaned out the pantry. I still open the pantry door and think, yes, that was really worth it. And I'm glad of the time I spent with my son and the grandkids too. All of it felt right. 

    Now it's different. Now if it is the bad news I won't be hanging out here trying to maintain a normal life and setting myself up for a hard go of treatment yes, but with a positive prognosis at the end. Cleaning up with the idea of something to live with and return to at the end. Now if it's bad news it really be the, ‘okay what do I want to do before I start dying. I will drop everything and do that. How much time do I think I have, what will come next how to manage all of that so I get my end of life in before I start any, not so hopeful treatments that may or may not save my life, for a bit or not much longer and at what cost?’ That will be the story. And with that story I no longer give two cents about the pantry, or my finances, or cooking up casseroles to eat later. All of that changes. I'm not exactly sure how it will change. I don't really want to go there until I have to. But I know it will change. And I just want to be in it, really in it, so I don't loose the chance to do those things that really matter to me in some false idea of treatment and routine and future. 

    But, for now, we are in the pause. And the mental default is that I will come back from that meeting tomorrow with the knowledge that my cancer is gone now. That yes there will be radiation, and the daily pill, but that these are preventative measures now, not cancer curing. That is the plan. But in the meantime, in case that is not the case, I am not committing to anything. I am not even committing to this bottle garden. I won't care about it if the news is bad. Or I might not care about it. I don't know yet. I am sorta prepared. But it's like being pregnant for the first time. You don't really know how you'll react, what it will be like when the baby comes. Not until it actually happens. 

    Why am I so afraid? Why can't I just be comfortable that all is as it appears and my cancer is gone, killed off by the chemo and removed by the surgery. And anything left is too small to detect. And maybe it will grow back to detectable size in three or five years, but really with the extra radiation and that daily pill, it's probably not likely. I will probably be fine, still have to go through the radiation, might qualify for the partial breast radiation trial, and take that pill. And I will probably have those ten years ahead to have a real life. We shall see. We'll start to know tomorrow. One level of knowing. The doctors probably know already. I will know more tomorrow. 

    Having a bit of a hard time convincing my husband to go to Camp Comfort this weekend. He just doesn't want to go. But I will bully this one through. I want to go there no matter what the news is going to be tomorrow. Unlikely I will have tests scheduled for as fast as Thursday or Friday. Unlikely I won't get at least the weekend off. And I may even get my husband to leave me out there for the week and pick me up next weekend. I might do that too. Have a week out at Camp Comfort by myself. Either way. Either good news or bad news. A week at the cottage, on my own but with our friend T nearby if I need help. And T even said he would loan me his car. Whip into town to buy groceries. A week in nature would do me a world of good. Either way. I may just make a point to go for it. 

    Gonna pour myself another cup of coffee, have a good pee, and be ready to talk to business plan lady about conference sponsors for an hour again, or as long as necessary, and then get on my way to live my day. Laundry. Exercises. Bath. Nap. Simple schedule. Add knitting and/or reading as I feel like it. One more day like this. 

    Tomorrow morning will be like a normal morning. Blood test around 11:00 am. Then a lot of sitting around waiting to see the two, always late, doctors. Reading. I'll bring  the gut book, and a little bag of snacks, nuts, cheese, dried apricots. I know the routine. It's been a couple of months since I’ve been in the cancer clinic. But I still remember how to do this. I remember the last time, it was like getting out of school at the end of summer. Holidays are over now. It's back to school day tomorrow. But it might not be so bad. I might actually get to graduate! Think positive. It could be really happy, graduation day!

    And then on Thursday, Thursday will be let people know day. One way or the other. Start letting people know. I'll let my family know first. That will probably be tomorrow after I'm done. And then start letting everybody else I know starting Thursday, and start making my next level of plans then too. 

    Dispatched: June 4

  • 3 Jun 2019 5:59 AM | Contact Me (Administrator)


    I believed that the end of cancer, and treatment and all that debilitating sickness was going to be now. Today. And today is nothing. I am certainly not recovered from the chemo. Promise from the doctor insurance form - not kept. And not only that, I may never recover from the chemo. Correction. For sure I will never recover from the chemo. I will always be reduced, and I will be at greater risk for further more deadly cancers. And I will never recover from the surgery either. My boob will settle down, but I will always be at risk for lymphedema. And the chopped off parts won’t grow back, what’s gone is gone. I have been set back in a way that will affect me for the rest of my life now. And there is no guarantee that I still won't get more cancer either. So. Today is not the end. It's marked in my calendar. I put it in there last fall. But it's not really the end. 


    Today is the day I marked down in my calendar. Today was the happy day when not only would treatment be over, but all the chemo side effects would be over too, and I would be ready to go to my old office job conference, and host a thank you party for all my fans and supporters. I went through a lot of the early chemo feeling like today was a long way off, but also that today was real. That I would be feeling like my old self, and able to take up the reins of my old life today. Beginning of June. That's what it said on one of my medical forms, expected recovery, June 2019. Prognosis, excellent for a full recovery. And expected day of recovery beginning of June. Dr. P wrote that. And it made me really happy and encouraged for a long time. It gave me an actual get better date, and a good prognosis for it too. And I see that was part of why I felt like I needed to keep cleaning the house, needed to keep up with work, how I needed to keep a regular schedule, so I wouldn't be too far behind when this day came. This very real,  beginning of June, Monday morning. Back to work, back to your old life date. What was he thinking? Where did he get this date from? 

    He calculated through the chemo at an on schedule rate, then allowed the four to six weeks for surgery and four weeks after that for test results? Was that the methodology here? That calculation does not include radiation at all even though that was part of the treatment plan from the beginning. Because I don't think you could work through radiation side effects or not. It's every single week day, by the time you do the traveling and spend time in the waiting room, and then getting dressed and undressed, by the time you do all that there is no way that anybody could realistically be working full time as well. This is even more disruptive than the Taxol. Or the AC. Technically speaking. Simply in the number of hours it takes out of your day, Monday to Friday, every single day. We don't know yet where we fare on the debility illness level of this one. 

    I guess this is partly how I had the idea that radiation must be this, "bit of light" radiation would be something they just zapped me with, once, in the surgery room. I would barely notice it. They do the surgery, give me a light zap of radiation to kill any loose surviving cancer cells and then sew me up. This June deadline is what gave me that idea. Could I go back to work today? If I didn't have radiation coming up, if this really was the end, could I go back to work today? 

    My eyelids are still a mess, but I could work with them like this. My nails are threatening to fall off and even my husband sees the damage now, but I could go to work like this. I still get tired and need a short nap in the afternoons, but I could go back to work like this. My brain is still a bit fuzzy, but I could go back to work like this. Each symptom on it's own is not enough to keep me from being able to work. When you put them all together that's more of a problem. And when you note that these are not like normal scratches and injuries that will take a few weeks to heal, that they will in fact be ongoing now for the next six months to a year. Then going back to work, even a work at home job starts to look harder. Could I go back to work, long term, like this day in and day out with all these symptoms happening at the same time. I could. If I had to I could. I would not be as good as I was, but I could be good enough to work. I would be tired all the time, I would make more mistakes, I would be distracted, I would be more prone to emotional outbursts on account of being tired, ill and just mentally not being able to handle work stress on top of cancer stress under those circumstances. But I could do it if I had to. But I would be running on auto pilot until I crashed. And if I looked back on it, it would all be a blur. So, also it depends on the kind of work too. I need to be really sharp, and really stable to do my job(s). That's the nature of the work I do, the nature of the niche that I've carved for myself work wise. So that would be a problem. And it's a small niche, you live and die in this business by your reputation. I couldn't screw up. I would lose work, and I wouldn't be able to get new work later on. So. I could do some kind of work, but not my main work. 

    And it's not an option anyway. I can't go back to work now because I need to go through this whole other stage of treatment. And get beat down again. And will need time to recover from that. 

    And that's at the best. That's the best case scenario. If they find microscopic cancer in my tests, or more aggressive cells still alive in my tumour, then I'm in for a whole other story, possible rounds of real treatment, not "light radiation". So for sure I wouldn't be able to go back to work. 

    So what does this mean? It means I have to go again to the disability insurance people, get another doctor form to explain the radiation and the radiation time frame. I have the form for that already. I will need to get a doctor to fill it out before the end of the month. The sooner the better. I can probably fill it out myself and just get Dr. P to sign it. He would do that. And I know enough about the radiology treatment plan that I could write it up as well as he could. Four weeks from May 21 until my next visit where they do all the scans and tattoo me. So June 21 for that visit, at the earliest. Then two weeks for the radiologist to come up with his treatment plan. So end of June. Treatment could actually start at the end of June. Six weeks of treatment. Until the middle of August. Then six weeks of healing (I'm an old lady) and that is when my follow appointment to assess the radiation. First of October. So, really, and realistically that is my go back to work date. That is the first date I will be okay to work again. And egads, look at that, we're all the way around to a full year. The first day of chemo was October 15. 

    October is my first realistic chance of starting the 'normal' life. Then it's three months to my next appointment if all that went well. That's January. Another appointment with the radiologist. Then at six months after radiation it's the handover back to Dr. P and I start the daily chemo pill. And who knows who often he will want to see me. 

    It's pretty depressing. 

    Is it better or worse that Dr. P wrote down that I would be done today? That I would be better today and it would all be over and behind me by now. 

    On the one hand it did give me a big boost during the chemo. It gave me a framework, and encouragement, and it was still severe enough for me to be more contentious about getting my insurance programs on the move and taking a medical leave from my office job. So practically speaking it was good. Past June, longer than six months is a long time to imagine being disabled when you are feeling good. It was enough to get me managing things correctly, but not so long it was overwhelming. That is why I kept up with the housework, and why I bullied through the treatment and kept myself walking. That is partly why I got into caring for myself more, and why I felt like it was okay to indulge myself in clothes, bedding, books. Temporary. I felt like I would be going back to work soon enough, I felt like I would start making money again. And as time went on, and I didn't feel so good, I felt like I could make a choice to perhaps retire and quit working altogether and just be broke for the rest of my life. 

    And now. Now I am basically not doing anything. 

    I thought the end of cancer, and treatment and all that debilitating sickness was going to be now. Today. I thought the end was going to be today. And today is nothing. I am certainly not recovered from the chemo. Promise not kept. And not only that, I may never recover from the chemo. Correction. For sure I will never recover from the chemo. I will always be reduced, and I will be at greater risk for further more deadly cancers. And I will never recover from the surgery either. My boob will settle down, but I will always be at risk for lymphedema. And the chopped off parts won’t grow back, what’s gone is gone. I have been set back. And I have been set back in a way that will affect me for the rest of my life now. And there is no guarantee that I still won't get more cancer either. So. Today is not the end. It's marked in my calendar. But it's not really the end. 

    Not everything you put in your calendar will come to pass.

    And I have all these other things written down to start doing today. Beside the party, besides holding the party and then getting on a plane to head out west and spend time visiting my family, and then settling in at the ranch to bake for the ranch hands. That plan won't be happening now, not on that timeline. What else did I have written down. Oh yeah, get my teeth fixed. Get that done in case of a recurrence and the risk of further chemo. Get my eyes checked and new glasses and contacts. I was going to treat myself to this whole body overhaul. This early sixties over haul to get set up for the rest of my older life. And lose the weight wasn't even on that list because I hadn't gained on any extra weight yet when I made the list. I was a pretty good weight. I wasn't so worried about it. All of this was going to start today. That was in my calendar. End of chemo effects. And this whole list of things to start doing. 

    Well now I know better. Last day of dangerous chemo immunity issues. That's it. Still recovering from surgery. Still need to stretch my arm every day, twice a day. Still worried about lymphedema, actually looking at my wrist right now and wondering, is it lymphedema starting, or is it just the normal right wrist swelling that I get sometimes when I write for too long. Hard to tell. And I am paranoid. So that makes it even harder to tell. I have a doctor appointment day after tomorrow. I can show him then, Dr. P. See what he says. Perhaps drop in to see my lymphedema specialist and the physiotherapist while I'm in that part of town anyway. We'll see which way it goes between now and Wednesday. My middle finger on my right hand, really feels like the nail will come off. That would be bad for the lymphedema too. They tell you to try not to get mosquito bites because of the risk of infection, nails falling off are probably in a whole different, bigger risk category. 

    And in the end that is the thing about cancer and this treatment. It changes all the rules. It changes the rules in ways that are unimaginable if you don't have cancer, if you aren't going through treatment, if it isn't your own body that has changed so dramatically. The doctors, nurses, and therapists might know in a logical way. But that is not the same thing as being in your body, and the rules of your body change and shift in such fundamental ways. 

    Why do you care about cholesterol when the chemo has probably damaged your heart way more than any extra serving of eggs will ever do, even if you had that extra serving every day now for the rest of your life. It's so out of proportion. It silences you. It silences you out of the whole every day health conversation that people are still having all around you.

    It reminds me of the insight on the silence of young girls with abusive boy friends. If all the other girls are taking about boys trying shyly to kiss them, about what to do if he tries to feel you up. Giggling with each other over their new found power. What do you say if your boy friend was bashing your head against the door of his car until you saw stars, then threw you in the back seat and raped you there. How do you join the pyjama party conversation then? Your experience is so far off compared to their’s that you are silenced. What can you say? You can't say anything. It's a whole other planet from the normal fumbling and fondling that goes on between boys and girls that age. You're afraid to talk. And what could you say that they could even understand. 

    That is the way I feel about my body and health now. Yes, I am getting back into exercise and fitness again. It's kept me going through all of this chemo, it's kept my will to live going too. But I'm not really in the same conversation as other people anymore. I am silenced on that front. And even other cancer survivors, even other specifically breast cancer survivors. It's a different story for each of us. And it's taking all of us different lengths of time to grasp what's going on. That one women who thought, thinks that she and the doctors should have better control. The one who had the BRCA gene, with the total hysterectomy, and the lumpectomy and reconstruction that turned into a double mastectomy in two weeks, right before our very eyes. She still thinks that somebody should have known this would happen. At the very same time that she shopped around through five different surgeons before she found one who would do the implants at the same time as the surgery. Double masectomy, plus two silicone implants, couldn't move either arm, and showed up a the group meeting. She still thinks she should be able to control this, control her body, if only one of these doctors would get it right, if only one of the would listen to her and do what she wants. It's heartbreaking to watch. She is fighting for her very life now. And she seems to know it on one level, and profoundly deny it on another level. Worrying about implants. Going through all that extra pain, forcing your body to make all those extra adjustments, use it's energy on that, when she has started the real, do or die cancer fight. Right now. Yesterday, the day before they found that it had spread to her lymph nodes and was moving fast. Growing fast. Two months ago nothing. And now this. 

    That is the story that was in the news of Joe Biden's son. Pronounced all clear in November. They found it was back in early in the new year. And dead by June. Beat cancer in November. A survivor in November. Dead in June. That's how it can happen. I know that. 

    I feel it now, profoundly as it affects my future. 

    You have to live with both. You have to live with being a survivor. But you also have to live with the possibility that you're not really a survivor either. It might come back. And after chemo and the treatments I've had another one might come back. And with the genetics I have, I am still in line for colon cancer, and malignant melanoma too. All of the above. But I also have to live as if this is my brush with cancer, that it takes a year or two out of my life, up to three to fully recover and feel like it's behind me. Five to know that this cancer has not set up shop someplace else in my body. But really all the rest of my life with the potential of more cancer. That is just how it is now. And I knew, from my family history that it might be this way. And I knew from my family history how cancer can turn into this long, drawn out chronic situation. It can kill you fast, within a few months. Like my mom with her malignant melanoma at the end. But it can also move slowly. My brother and his colon cancer. Mom and her breast cancer. You can live for years and decades with a slow moving cancer, and then it becomes an issue of managing the side effects of treatment as much as managing the cancer itself. I have seen that personally. Up close and personal in my own family. 

    I feel like I am now out of the conversations about cancer and food, I don’t want to even think about the cancer causing properties of toasted bread. I've had chemo, there is no food, and no amount of that food that I can eat that will be as toxic as the chemo that’s gone through me. Ever. Those piddling could cause cancer foods are of no further interest to me. I fight a different fight now. It's the abusive rapist, not the shy fumbling boyfriend, that's what I'm up against now. And once you've been there, even if you successfully manage to get the abusive rapist out of your life, you still don't get to go back to being the innocent girl who doesn't know about rape and violence. You survive. You can even thrive. But you have to go forward from there, you don’t get to go back to the innocence of before. 

    And me, who has never really been seriously ill in my life. I have to go forward from here too. 

    I did it with my back. When I had all those back problems it knocked me down. And it changed my life forever. I now have to manage my back. I swim, I exercise, I take care of it. It's just part of my life now. And the same with my ankles. I tore the ligaments on both sides of my right ankle. It was swollen worse than my wrist. And ligaments also don't ever get better. I had to get physiotherapy to deal with the scarring, and then I had to strengthen my ankle muscles so they could take over from the ligaments. And I have done that. And I continue to do that. It's just part of my life now. The weekly swim, the regular exercise and the special ankle exercises. I just do them. Going forward from damage and injury. Just a regular part of my life. So much so that in fact I've forgotten why I do it that way. I just do it. 

    At the best scenario, that is what I will have to do with my arm. And with my weight and with whatever permanent side effects come out of this cancer treatment. I have to deal with it. Solve it, and then maintain it as just the way I live now, and go on like that with the new adjusted lifestyle. It's not so onerous. Mom could've helped herself. If she had really done those exercises she could probably have helped herself. And if she had really got her eating and weight under control too. But she didn't. It was all she could do to stay alive. She put all her energy into getting up every day, getting on the bus and going to work. That was her priority. 

    She worked in a sewing factory. It was no big career that she was pursuing. It gave her her own money that she could spend as she liked. And that was important to her. Even if it wasn't much money. She took bus trips to visit her family in BC and Manitoba. She bought magazines, and thread, and fabric. She filled a whole room full of sewing and drawing supplies - for her retirement. So she would have something to do when she retired. An entire room packed full of stuff. It's true. Dad probably would never have let her spend money that way if it weren't her own money. And she died at before she turned 65. She never retired. 

    She stopped working when her last surgery did not heal properly and she had a hole in her chest that a nurse had to look at every couple of days and change the dressing. That is what she was doing with her life when Dad killed himself. It was never a question of her going back to work after that. But right up until then she did plan to go back to work after that wound sealed. She died in early June. She died at this time of year. Dad killed himself in September. She died in June. Neither one of them made it to retirement age. 

    I have been waiting to pass them. I have been waiting to cross the year when they both died. I have been waiting to live through it. I have been waiting to see if I can live longer than them. With this cancer in me it was a frighteningly real prospect that I would die on that same schedule. That I would not make it past them, that I would never get to retirement. Me turning 63 at the end of this month.  

    My Dad killed himself in September. I was diagnosed in September. Both of us at 62. Hmm. I'm glad I didn't realize that then. I'm glad I had his age wrong all this time and only figured it out now, a year later. I'm glad I only figured it out now after I've gone through all this initial main stuff where I had to be optimistic and imagine a life long enough after this that would make it all worthwhile. That helped me. I'm glad that I felt that I would in fact be done, and through it and recovered by the time I was the same age as my parents were when they died. I am glad that I didn't feel like I got that diagnosis on the exact anniversary of my father's death. But now that I think of it, maybe I did. Maybe I even did that. Better not to know a thing like that. Better to have the numbers wrong in your head. And then to find out later, closer to the anniversary of your mother's death that in fact you were wrong. The big death days have passed, are passing and it looks like you will clear them. It looks like you will get to have a look at life beyond the years that your parents, both your parents had. Talk about your magical thinking! 

    How can I be mad at Dr. P for giving me an more optimistic diagnosis and prognosis than was strictly accurate? I know how important these lies can be to your mental health. 

    That was a hard year for me, the year my parents both died. Frodo my cat buddy of eighteen years died that year. And Nana died that year too. It was all those deaths so close together. Dad, Frodo and Nana they were a big part of my support network. I loved them. They loved, me, were proud of me, accepted me fully who who I was. That time is like a blur in my mind. A blur of grief. They were my first close deaths. They were the first deaths that weren't distant cold grandparents who were expected to die in your lifetime anyway. They were the first really hard, heartbreaking deaths. And they all happened pretty close together. 

    I am remembering that time. Death. Death is part of the equation again. 

    But it's like my back weakness, you know it's there, you've seen how the future might be. But that doesn't mean it has to be that future. I solved my back. I got another good twenty years of pain free, fully mobile life from it. And they were good because while I incorporated the solution to my habits for the rest of my life, I never went back to my old, back injury lifestyle, I did go forward. And while there were some rough spots along the way, and a price to pay, my back never bugged me like that again and I really took advantage of that. I had a good, active, adventurous, full life. I'm glad. I have no regrets if I have to live a physically more restrictive life now. I would be okay. I got an great extra twenty years. I’ll have those great memories as long as I have memories. 

    And the same with the cancer. I can see this as feasible. That I go through this. I have this chronic situation now, but also a way to live with it so that I forget about it, manage it just fine. Let it change your life. Let this little look a the future, this preview of times to come inform the way you live now. And the way you plan for the future. 

    Different things will be important. I want to take advantage of different things when I get through this. 

    What? What has changed in my perception? Time. Time and energy. I am thinking differently about time and energy. I am thinking differently about where I want to put my time and energy. And myself in relation to the universe too. I am thinking about that. My role.

    I am in this pause. I don't know what will happen next. I don't know if I will get to start doing any of this. 

    I have stopped. This is the first time in all of this that I've actually just stopped. And it's not because I have to. I am well enough that I could've been doing housework on schedule this weekend. I could've been making dessert and a nice Sunday roast beast dinner yesterday on schedule and did my manicure too. If I could do it in the middle of chemo, I could do it now. I am regaining my strength and mobility and pretty much able to use my arm as I normally would. But I have stopped. 

    I barely took care of some plants. I went to a social function on Saturday. I made cinnamon buns to welcome the new summer students to the film company downstairs and I cleaned up after myself. I started the second sleeve on the granddaughter sweater. I did my exercises on Saturday. Stretches and mobility exercises both days. That was all I did all weekend. Listened to the radio. 

    I could've done more. But I didn't. I have stopped. 

    I don't know what the next step will be. I'm not interested in cleaning the house and being ready for it it either way. Why am I so stopped?

    Because I know more now. I know that if it turns out that there is more cancer there, that they want to do more tests and possibly more treatment that it will be a whole different ball of wax. It won't be, do the treatments, however tough they are, get through them and then, even though it might come back you will probably get a bit of a break to have some life in between. Decide how to spend that life in between. That is the good outcome story. 

    I know more. The bad outcome story will be a whole other ball of wax. More serious decisions will need to be made. I will have more choices, it won't be a case of just doing the main, regular protocol anymore. We will all be in territory with less charts to go by. And it will be more deadly. So what will I do? I will do some further tests but not others. I will do another pet scan, but probably not a chest lymph biopsy. I will get on a plane and go visit my family out west, even in this small period of time between now and whenever, whatever the next level of treatment is. So what if it's a risk for my poor arm. Not the issue anymore. Because that news opens up the option of beginning of dying. It won't matter about housekeeping then. It won't matter what's going on with the housekeeping. 

    This is why I'm letting my bottle garden die now when I was so faithful about keeping it alive when I felt like I was barely alive myself. I might have to just shut it down altogether. No sense firing it up the day before I find out that the cancer is still there, has grown in the background, set up shop somewhere else, has these aggressive cells, still small yet, but alive that will need massive amounts of who knows what chemo to kill them. No sense worrying about housekeeping right now. If it's bad I won't care anymore. No fooling around with recreating a new life from here. And forget my old work job too. I will just resign officially if I find out I still have cancer. 

    My little decision system fails me now. There is nothing I can do that works for both the prospect of this was it, cancer cured, still this prevention chemo pills to take, and that’s a way bigger hiccup than I thought, but still - heading towards recovery and the expectation of a long enough future life to make it worthwhile. Or the prospect of, it didn't work. There is still cancer growing in me, and we have a whole new ballgame. Because I know I will act dramatically different. Starting Thursday. Then it will be all different. I may blow money foolishly. I probably will hop on a plane. I'll probably go see my kids and grandkids. I won't fool around being patient and long term anymore. All of that will speed up. I would go visit everybody before I go into another horrible, me destroying round of treatment. 

    The only thing I can do with myself as I wait is simply take care of me, in the moment. 

    I can keep up with the range of motion exercises. I can keep up with the mountain walk. I can keep up with the strength building exercises. I can keep up with the bathing and grooming. I can keep up with the naps, rest and meditation. I can stay calm and relaxed, not stress myself. I can be as ready as I can be, mentally and physically to hear the worst if I have to. I guess that's what I'm doing now. 

    It's not the same as being depressed. I don't especially think it will be the worst. I think that in fact it will probably be the good news. It's just that I'm keeping calm, I'm not wasting energy on stuff that might not matter after Wednesday. I don't mind the pause before the storm. It's a part of life. And it can be a meaningful pause. 

    I am living in the moment. This moment. And I know it will end soon enough. Soon enough we will know more. And then it will be a case of, hey I better get going on the housework and plants and get myself set up for summer in the city, and making it through this phase of treatment, and plan the next few months, six months, year of my life accordingly. Which is more or less what I'm already doing. 

    Or, it will be the other thing. And that will be dramatic. I will move quickly on that one. And it will shock my husband and family what I do and how fast I move. They will have trouble keeping up with me. But I will have to move anyway. Because I won’t have much time. 

    Why? Because if they do find cancer elsewhere, if they find cancer that is not in my breast, then I'm stage four. That means that my odds of dying of it are now greater than my odds of being cured by any form of treatment. And that's why my decisions will get harsher. And that's why I will want to be amongst family and friends before I go into any kind of treatment and before I start the dying process. Either way. I may decide to just start dying, the way our friend M did. Take what ever life I get while I still feel more or less okay, and forget the treatments. I will take time to make that decision more carefully. 

    I didn't need to do it with the first diagnosis. My odds were better than 50/50. They were 75/25. Still in my favour. If this cancer has spread to other organs, then everything changes. And soon. Dramatically and right away. 

    So. No, I'm not depressed. I'm not waiting because I'm depressed. I'm waiting because I know if it goes that way that I will have to accept it right away, and I will have to throw a lot of energy into adapting to that new reality and making the most out of it my time. I don't want to be caught still living by old rules and expectations of myself. 

    Small things I regret. When the kids were young I had a whole day to myself. The boys were at a sleepover and boy scout camping. I cleaned out the freezer. That's what I did with that day. That clean freezer wasn’t worth it. What a waste of a precious day to myself. I could've spent it with my best friend. We could've had a good memorable day together. I could've simply spent it on my own. I could've spent it sewing a new outfit for myself, or for more my baby niece. I could have spent it simply relaxing and enjoying the peace in my house. Stupid to clean the freezer on that day however much it needed it. That’s a job I could have done easily with a houseful of young boys and their friends running around me. And so that is why I am not getting into the plants and housework right now. It might be stupid. 

    Better to spend this time being content and comfortable. Walking on the mountain, doing my mediation walk. Doing my range of motion exercises. Napping, reading, knitting, listening to music, playing with Luna the dog. Just being. Just being alive. Gathering calm. Gathering strength. 

    I guess gathering calm and strength will be good either way. 

    If the news is good I can use this calm and strength to get through this last bit of treatment. I can wake up and set up the gardening for the summer, set up a visit to Camp Comfort. I can do that bit of housework ahead of the heat. And maybe I can do some cooking ahead of the heat too. Ahead of the heat and radiation. Getting ready for brother’s visit. All of that. And I can send out little updates letting everybody know what's going on with me. 

    And if it's the other news, bad news then I can use the strength and calm for that too.  Resign from my office job and scriptwriting film work. Completely. Inform my insurance people. Go spend time with my family as I decide, or make them come here. I could travel tomorrow if I had to. Never mind my arm. I could do it. But that would be one of the first things I do, go back and see lymphedema specialist, get the compression garment for my arm. Ready to hop on a plane. 

    I think it will be fine. But I don't know for sure yet. 

    Dispatched: June 3

  • 2 Jun 2019 6:34 AM | Contact Me (Administrator)


    I don't see the light at the end of the tunnel right now. I look ahead and I see a dead end. There is a fork in the road at this dead end. There is a tunnel that goes right, and a tunnel that goes left. One will have a light that's big and strong and not so far off. One will have a dim light, far, far away. The doctors are standing at the fork, they will direct me down one tunnel or the other. Time carries me towards the dead end even if I feel like I can't make myself walk any further. Why? What do I fear? I fear treatment. I don't fear dying of cancer. I fear living through the treatment. I don't want more treatment. That is why I no longer want to go forward. 


    Sunday morning. The weather cooled off last night, the cold front came in without the promised big thunder storms. It's nice now. 

    Yesterday was a wedding, 're-creation'. That is what these friends are doing all summer, re-creating their wedding, which was small and only immediate family, for different friend groups over and over again. Once for all of us who didn't rate getting invited to the real wedding here in the city. Again in Paris. Again at their cottage in the country. Yet again at the cottage for his extended family. An entire summer of wedding re-creation parties. My husband did the cooking for the both of us. I went, but didn't cook. 

    I got an email from our friend T, letting me know about the Camp Comfort cottage schedule. I'll write back and let him know about the 'big wait' for the results on June 3rd, next Wednesday that will determine whether I can go forward with just this planned treatment, including the 'light' radiation. Or if I need to get ramped up for further stuff, perhaps more chemo, or more surgery. We'll know on Wednesday. Big information coming in then. Lab results on the mass that they removed and whether or not the 'margins' are clear. CT scan results on whether or not the cancer has started up anywhere else. Wednesday. We should have all those results on Wednesday. I am in pause until then. That is the truth. 

    I know more now. I know how it will just be a small thing sitting in that room with those two doctors. And I know how that small thing can turn into life devastating treatment. My brother and the tumour they found in his lung after his colon cancer treatment was all done. The one he didn't feel, the one he didn't know was there. I don't feel anything. I feel like this has all been a great success. But that doesn't mean it's true. We won't know until Wednesday. And even then we won't know for sure. It may still be there, lurking too small to be detected now, but will show up in a year or two. But this will be a hump. If it's gone then perhaps I may get away with less treatment for the radiation phase. And for sure I won't have to start up with any new treatments right away. But if there is something there, if there is something in the margins, or if there is something detectable on the CT scan, then I may have to jump right back into further treatment. Right now. I know that. 

    So. I wait. I enjoy this moment now. But I'm waiting. 

    I'm not cleaning house getting ready. The house is a mess. And falling further and further behind. I don't care. I'm not even doing the plants. They are dying. My bottle garden is dying, and I've decided to just shut it down. The daffodils are dying and I've decided to just pull them out and now worry about planting new flowers in the flower box, or buy new plants for it. I don't care. There are dead leaves on the house plants. I don't care. 

    I'm overwhelmed. This house is so bad, I don't even know where to start. But I'm not going to spend my few days of feeling good, of not knowing bad news, of not knowing any news, the time when they assess the success of the treatments so far. I am not going to spend them in this hopeless battle with housework. That job never ends anyway. Plus I don’t know which way to go with the housecleaning yet. 

    If they find something. If a big new treatment is required, then I really am on the way to dying. And that is a whole other ball game. I will use my energy very differently. 

    Housework will turn into going through my stuff and throwing things out so the kids won't have so much to deal with. It will be getting my will updated so that it's easy and straightforward. It will be giving away stuff now, even more stuff. I have been giving away stuff all along, the kids already have all the old furniture, and the old stereo. But there are still a few things, pictures, sculptures, jewelry. I would give more away. And I would travel. If I get a moment. If there is a window of a few weeks before the next wave of further tests, or further treatment. If there is that moment to decide, then I'll go travel for a while. That's what will happen. I know I would have limited time, and that I have limited energy. That's how I would spend it if they find cancer in the margins, and if they find cancer elsewhere in my body. That is a whole different ball game. 

    If it seems that they got this cancer, then it will be different. Then I still have radiation, but it might not be so bad. Then I will still have that daily pill, but it might not be so bad. And I will use this bit of extra time to heal differently. Then I might get on with a bit more maintenance housework. As my arm gets better. That too. 

    In the meantime. This is my life. 

    I do the range of motion stretches, the do the strength exercises. I add back some of my own exercises that I think will fit into the mix, and that I know will be good for my hips, back, ankles. I do the deep breathing too. I do my mountain walk every other day. I miss some days. I missed Friday for a trip to the river. That's fine. I take one day a week off completely. Usually it's Sunday. I write for three or four hours every day. I still have a nap every day. Sometimes it's only twenty minutes. Sometimes it's two hours. That is still an important part of my life. 

    My energy and strength are rebuilding, I'm working on them. But I'm not all the way back yet and that will take a while, even without any further treatment after this, it would still take a while. My hair is still just a fuzzy ball on my head, my fingernails are still black. My finger tips are still numb. It will take a while for me to get back to anything like I was before this all started. Even without treatment. Even if I didn't have any radiation, or any daily hormone inhibiting pills. It would still take a while to recover. 

    I'm being kind to me. I'm giving me this time, and freedom from deadlines, even my own self-imposed deadline, stress. I gave up on the to do lists that I used to help me get up every morning during the chemo. For one thing I am physically strong enough to do those lists, but mentally not so much. Mentally I don't care. Mentally I find that I have to be even nicer to me. This has worn me down mentally more that I expected. That is turning into the real fight now. Mental health.

    I don't see the light at the end of the tunnel right now. I just don't see it. I look ahead and I see a dead end. There is a fork in the road at this dead end. There is a tunnel that goes right, and a tunnel that goes left. One will have a light that's big and strong and not so far off. One will have a dim light, far, far away. The doctors are standing at the fork, they will direct me down one tunnel or the other. I won't know which it will be until I get there, not until I take that first step into that tunnel and look ahead from there. That is where I am at right now. The dead end is coming closer. I am walking towards it. Time carries me there even if I feel like I can't walk any further. Even if I don't really want to know, even if I would rather just sit down here and be in those moment of feeling not too bad, with hope, for the rest of my life rather than get to that dead end and be directed to the tunnel with the dim light at the far, far end. Why? What do I fear? I fear treatment. I don't fear dying of cancer. I fear living through the treatment. This was bad enough. I don't want another year of treatment, another two years of treatment, treatment that beats me down further and further. I don't want that. That's what I'm afraid of. That is why I no longer want to go forward. 

    Dispatched: June 2

  • 1 Jun 2019 6:00 AM | Contact Me (Administrator)


    Maybe it wasn't such a good idea to have a so much of a no cancer day, forget about cancer day after all. What am I saying? Of course it was - of course it was good to have a no cancer day no matter what the consequences. 


    Saturday morning. Raining, and cooled off this morning.  It feels good. But yesterday it was warm and sunny and that felt good too.

    We went out to the Rothesay Shipwreck on the St. Lawrence River. The guys did their dive and us gals sat on the rocks with Luna. We watched a weasel slowly work its way towards us and right into the rocks below us before it realized we were there and it ducked away. Luna never noticed it. And we chatted. I have good friends to talk with. It was nice to sit by the river and talk with a wise, funny old friend. She's  smart and knows a lot so it was fun to talk to her about the dietary things I've learned. And we had Luna to play with. And the guys to entertain us as well. 

    What I liked about this visit was that they haven't seen me since the diagnosis and they just jumped right in as if I was okay, and you know, I was more okay. T gave me this huge bear hug. And it was good to cross that barrier with people and not be afraid of hugs. My husband and sister have been very careful hugging me since they saw the after-surgery results. And the radiologist was very careful too. It's been a month now. Time to start really finish the healing part. And today, June 1st is also my official, now we're done with the chemo immunity issues date. If it was only chemo I would be passed off as done the debilitating part. But I had surgery in between. And I'm facing radiation coming up. Still. Milestone moments. I'm passing milestone recovery moments now. Big hug. No problem. Another milestone recovery moment. 

    It was a beautiful day to be out in the sunshine, with friends, by the water. All day. Luna is an older dog, we think she might even be a bit deaf, she is generally eager to please, but completely ignores you when you call her. It was T that figured out that she probably just doesn't hear you. It was a good day. We did our fish and chips picnic lunch in the usual spot in the park. Good therapy day. Life goes on. I forgot all about cancer for a day.

    Everybody was pooped when we got back. Luna slept. My husband slept. I slept. I slept from 7 pm until 9:30, got up for half an hour, and went to bed at 10 and slept deeply until 5:00am. Pretty good. Lot's of good deep unconscious sleeping yesterday, plus the fresh air and freer life. I didn't do my exercises. I didn't go for my walk on the mountain. I ate fish and chips for lunch. Teen burger and onion rings for supper. But I still say it was a healthy day. A different kind of health. Nature by the river. Good friends from my real life. Doggy therapy. It was a healthy day. I feel deeply - better. More me again, more human again. 

    My husband and Luna are out for their morning walk with the guy who lives across the street and his dog Henry. 

    This afternoon we are going to a wedding potluck, the couple is our age and have lived together for a long time before they decided to finally get married. This isn’t their actual wedding, this is a doing-their-vows-in-front-of-friends party. My husband is making seafood salad as our contribution. A big storm is predicted for this afternoon.  I don't want to leave Luna alone in a thunderstorm. I will stay here with her if that happens and the storm rolls in. Or I will come home early if it starts storming. I know how dogs are scared of storms. 

    I am bit worried. One side of my right wrist seemed slightly swollen for a couple of days, now the top of my wrist looks a bit swollen too. Am I paranoid? Maybe, maybe not. Anyways I am set up with good care and can go to them right away to check on things if I want. Monday, if it looks like it's progressing I'll go on Monday. Meantime, I'll keep up with the exercises that I've been doing. And not add weights after all. For the moment. Though I didn't do anything extra yesterday. Yes I did. Luna on the leash. It didn't feel like pain, or anything much. but it was in fact something stretching and bugging that arm. Hmm. Maybe it wasn't such a good idea to have a so much of a no cancer day, forget about it day after all. 

    What am I saying? Of course it was - of course it was good to have a no cancer day. 

    Dispatched: June 1



  • 31 May 2019 5:53 AM | Contact Me (Administrator)


    Physiotherapy is a whole project. You don't just start having your old life back. You need to actually work your way back into it. I'm learning new things. For example, if I want to increase my stationary bike time it's better to bike twice a day for fifteen minutes than once a day for thirty minutes. Who knew? And my brain did go - what? Another thing to schedule? Twice a day. It's easier to plan for one thirty minute go on the stationary bike than two different fifteen minute sessions. But yes, of course. I will try this. I am ready and willing to learn and try new things. It’s for my new life. 


    Friday morning. It's lovely and sunny. We are going to the river today, the boys will go diving and us gals will hang out on the beach with Luna the dog. We'll have Tony's Take Out fish and chips in the park for lunch and then we'll be home by 4:00 before the rush hour. It'll be a good day. It'll be good to have a 'normal' routine from out past, with changes. Me in treatment, recovering, Luna instead of Moose.

    Luna arrived last night. It is very different bringing a settled, socialized adult dog into your home. She's adaptable, and she likes us, friendly waggly tale when you look at her and smile. But she also has her own personality and way of living. She is more mature and independent. She slept on the couch. She wagged her tail at me when I got up early, and followed me around when I had my pee and made coffee, but when she saw that I was just going to sit down in my office, then she went back to bed on the couch and back to sleep. Not prepared to get up that early. She's a dog that likes to sleep in. She did spend a bit of time sitting by the door after her person left, but not too long, and she did better after my husband took her out for a walk and she got to see, and more importantly smell the way in and out of here, plus the lay of the land around us. Plus she stood and looked out the balcony for a while too, watching things, recognizing Henry the dog in his yard across the street. She plays with Henry in the dog park most days. She's calm. And she doesn't bark when the doorbell rings. It's quite different having her around compared to Moose, and for sure compared to bringing a new puppy into the house.  

    Yesterday I went to physiotherapy. I went all by myself. I tried to take the bus but it only runs every half hour and if you miss it then you are hooped. I will need to get an actual schedule. I was worried I’d be late so I bailed and flagged a cab and ended up about twenty minutes early, so I just walked around the neighbourhood for a bit, stretched my legs. I didn't get my usual physiotherapist. I got another, beginning young woman, but she was being supervised so it was okay. She had me go through all the exercises that I'd been given before and show her that I knew how to do them, and was able to do them all, plus show her my range of motion. And I passed that.  So she gave me a bunch of new exercises, and some light, one pound ‘weight’ exercises to start building up my strength, my upper body strength and some additional range of motion exercises too. More pectoral muscle exercises. I can see where this exercise part is going to turn into a real, time consuming project. But that's okay. It will help me get through radiation with the least amount of damage to healthy tissue. 

    Physiotherapy is a whole project. And recovery is a whole project. You don't just start having your old life back. You need to actually work your way back into it. And just like the physiotherapy, it is the same and different. I recognize many of these exercises from yoga or dance classes in the past, but some are different. I'm learning new things. For example, if I want to increase my stationary bike time it's better to bike twice a day for fifteen minutes than once a day for thirty minutes. Who knew. And yes my brain did go - what? Another thing to schedule? Twice a day. It's easier to plan for one thirty minute go on the stationary bike than two fifteen minute sessions. But yes, of course. I will try this. I am ready and willing to learn and try new things. 

    I took the bus home. I got the mail from the post office. I was tired a lot yesterday. I slept. But it also felt good to get out on my own, get myself places and be more independent. That was good too. 

    Dispatched: May 31


  • 30 May 2019 5:57 AM | Contact Me (Administrator)


    One of the women passed out and they called for her friend to come and get her.  Another woman had to leave because her new breasts started to bleed down the front of her dress. These women are both a lot tougher and more social than me. 



    Thursday morning, my husband is going to be away on a shoot in Cornwall all day. I have a physiotherapy appointment at the Wellness Centre this morning. I’m going to have to get there on my own. The appointment is at 10:30. Take the bus. Dress comfortably in something that I can wear for the physiotherapy session, trying new exercises. Bring my ebook to read in case I get there really early. And I can always get off the bus early if it looks like it will be too early and just walk the rest of the way. The walk will be good for me. 

    I had the breast cancer support group last night, and the super dynamic woman showed up. Two weeks after her double mastectomy. She can't move either of her arms. She had to swing her shoulders to pick up a pen. She had implants put in at the same time. She showed up in a low cut dress that showed off her new boobs. She wanted us to see how good they looked. Why did she come to the group session so soon after her surgery? Half of the other women were not there. Their chemo treatments have moved along, they are sicker now. They don't come if they are feeling too sick. That makes sense to me. That is what I would do too. 

    My lymphedema specialist was our expert this time. She looked worried at the sight of this woman who could not move either of her arms. I had to introduce myself. Interesting that my lymphedema specialist didn't recognize me with the wig on. 

    One of the other women, who was still in chemo suddenly turned pale and had to lie down on the rug in the hallway. And one of the volunteer leaders had to go out with her, and stay with her until they could call a friend to come and pick her up to take her away - either take her home or to the hospital. There was some concern about the woman's car. Yes. she drove herself to the group at that stage of her chemo cycle she drove herself to the group session. On public city streets. I remembered how the "fatigue" would hit you just like that, out of the blue and just knock you out. It wasn't just me. The double mastectomy woman had to leave early too because her breasts started to bleed down the front of her sexy low cut dress. This support group situation is much more volatile than I imagined. 

    Perhaps I have become too self indulgent. But I think I am managing better as a result. I think I am healing better as a result. And mentally I feel like I'm doing better too. Women generally are so hard on themselves. They push themselves so much. Perhaps too much.

    Yesterday morning was a great, three hour visit with my friend P in the terrace of one of the local bistros. It rained and we didn't care. The sun came out and we didn't care then either. It was great. We talked and talked. We talked about health, she was interested in my treatments and how it was going, where I'm at. So I got to tell that story again, and that's good for me and better talking to a friend that knows you from before cancer, knows you as a whole person, and who also has been through cancer treatments herself. And then we talked about our work, and our kids and grandkids. And that was really fun too. The things we have in common. The history we have together. Great! And I feel better. Way better, for it. 

    My husband brought Luna the dog upstairs to introduce her to our place before she comes to stay for the weekend. That'll be tonight. Luna is coming over tonight. She'll be with us all weekend. She is a sweet dog. We made friends pretty quickly. I cut some organic roast turkey off the bone and gave her a little piece. Got her to sit for me and gave her a bit of turkey. That did the trick. But I did startled Luna’s person. I forgot that I had no wig on, and was just wearing my thin tank so you could see the misshapen part of my breast. And my eyes are both red from the eyelashes rubbing on the eyeballs. So I guess it was a shock for Luna’s person to see me looking like that, and she was kinder than usual. The visible damage. Yes, it does give you a bit of a free pass. 

    So today will be nice. Having a dog will be fun. And tomorrow is a scuba diving trip with our old buddies T&V. We've done this trip before, it’s like an annual beginning of spring ritual for us. Everything is the same on their end. But different on our end. Moose is gone. He was a big part of it. And I have cancer. We have definitely lost a lot since the early days of this spring ritual. But I’m looking forward to reconnecting with those times gone by, with old buddies, and making plans for future trips too. 

    Dispatched: May 30 

  • 29 May 2019 6:18 AM | Contact Me (Administrator)


    I remember it being such a big deal last time laast fall at the beginning of all this. Now that I've been through so many medical procedures it seems so little, so fast, so easy. Just lie there on the machine with my arms over my head. I can put both arms over my head, no problem! Thank you physiotherapy team! Breathe when they tell you, hold your breath when they tell you. That was it. “You can get up now. I'll take out your IV now. Wait five minutes” and “So long”. No problem.



    Wednesday morning. What a day my granddaughter had yesterday. They pulled four teeth including the one that was growing sideways through the roof of her mouth. That was a big deal. No gas, no putting her under, no happy drugs. She was brave. When we first started taking her on those cross country trips my granddaughter used to flip out a lot. She lost her mind over the slightest medical scrape or minor mosquito bite. She had to learn it was okay for all this routine things to happen and trust that her body could heal her, and heal on it’s own. She had to call on that knowledge big time yesterday. I’m proud of her. She got herself through it. We chatted, It was fine. We swapped stories, my CT scan and medical adventures and her teeth. 

    Yesterday was CT scan day for me. That was my big project. I remember it being such a big deal last time. Last fall at the beginning of all this. Now that I've been through so many medical procedures it seems so little, so fast, so easy. You only fast for two hours. Not starting at midnight. You drink those three cups of gunk. They stick you with an IV. Yes she did have to try twice, my veins are a mess from the chemo, and the first try she really dug around for a long time, in my hand, trying to make it work, so much that I did have to start doing my breathing and hanging onto the pillow with my other hand. Three tries on my hand then she moved up my arm. Luckily she got it in the second place, on the second try. It was that big wrist vein that the chemo ladies mainly used that worked for her in the end, first try in that spot. Luckily. But even that wasn't such a big deal. And then lie there on the machine, with my arms over my head, that part was okay too. I can put both arms over my head, no problem! Thank you physiotherapy team! I already know that the iodine injection doesn't bother me, it just felt a bit cold in that arm that's all. Breathe when they tell you, hold your breath when they tell you. That was it. “You can get up now, I'll take out your IV now, wait 5 minutes” and “so long”. No problem. You don't walk out feeling all drugged and chemo-ed. It's not bad. My husband picked me up and drove me home, but I could've cabbed it. I didn't do any other 'exercise' yesterday. But I did do my laundry. And I did call the lymphedema lady and had a great chat with her, and I talked to the physiotherapist and will have another appointment to update my exercise routine tomorrow. So, it was a productive day. 

    And I had all those good connections with my son and granddaughter yesterday. That was good too. All in all a good day. 

    Until the end. My eyes were so sore by the end of the day from the eyelashes rubbing on them. And the house had all these fans and air conditioners going, blowing wind onto my poor eyes. I couldn't read, I couldn't watch TV. I was just miserable from those eyelashes in my eyeballs. I ended up just going to bed not long after 9 pm. And sleeping through until 5am. So I needed the sleep too. But I will need to do something about this. I'm suffering too much in the meantime. Even if I just get myself an audio book to listen to instead of having to read it. Perhaps that's a good way for me to spend my evenings. Here in this chair, knitting and listening to an audio book. What else can I do? It's better than be throwing a fit and being miserable. Another expense. 

    The cost of cancer. My chemo wardrobe that I bought in the fall. The sheets/bedding sets that I bought in the winter. The bottle garden that was my mid-chemo, mid-winter treat. The hot weather, 'radiation' wardrobe. e-books to read in the waiting rooms. Audio books to listen to at the end of the day when my eyes are sore as my lashes grow back in. That has been the extra cost of cancer for me so far. 

    Yes, I am lucky that I live in a country where we have universal health care. And yes, I am additionally lucky that I live in a big city where we have a place like the Wellness Centre that provides me with all these free additional support services. And I am even more additionally lucky that I live in this city where my hospital has an excellent specialized breast cancer clinic with excellent doctors and I have got the best care I could ever hope for from them. I have got the best chance of actually beating this cancer and having a pretty normal live for a pretty normal lifespan. I never thought that I would be saying I'm lucky I live in a big city so many times. But there you go. I am lucky I live in a big city like this.  

    Today. 

    Today I am going to do my mountain walk. Light exercise for the day after gunk drinks and iodine dyes. Today I'm going to pick up cash from the drugstore ATM on my way home because I'm having lunch with my friend P. That'll be fun. That'll be my morning. On the way home I'll try and stop at the post office and check the mail. And I'll have my nap. I'll do my range of motion exercises. Twice once in the morning and once in the evening. I'll order an easy summer 'beach read' audio book. 

    Dispatched: May 29 






  • 28 May 2019 6:16 AM | Contact Me (Administrator)


    I had big plans for next week. It's been written right into my day timer since last fall. I was going to host an it’s-over party celebrating the end of cancer. It’s written right there in black and white.That is where I thought we would be by now. All done. All better. Throwing a big party to celebrate the end of cancer. It was one of the things that kept me going through the chemo. Planning the party. That was back in the day when I thought 'a bit of light radiation at the end' meant that they would do it during surgery, one little blast of radiation, while I was still asleep, couldn't even feel it and then you're done. You can go home to your old life now. That's how I imagined it. Not this whole other thing starting up with this whole other set of doctors, nurses and technicians. Erasing that party from my day timer.  

    Tuesday morning. Somehow I did not imagine this day coming. In all my waiting for the next day, counting down the days until the end of chemo I never imagine a day like this, past it all, but still in it too. Still 'fatigued' still recovering, and still facing more treatment too, all at once. I just didn't imagine it. 

    Today is my CT scan. I just finished reading my old CT scan story where I met the elegant well groomed lady with the big tumour in her lungs who had smoked all her life and thought it was punishment, she thought she deserved her tumour. She was all alone. That's where I learned not to strike up too much of a conversation with the other patients. And the old woman with her daughter. The old woman who was actually about my age, getting chemo three times a week and tests like the CT scan on her day off. The daughter complained to the other patients, to the lab technicians, but clearly not to the doctor because she hadn't changed anything. 

    And I was alone, my husband drove me there and I took the bus home afterwards. I worried at first when I saw that everybody else had a carer with them, but it was fine. A lot of drinking their dye goop, waiting and reading, drinking more goop until finally you had drunk enough and were in the next room, the 'green room' for scanning. In your gown, with your IV in place chatting to a lady who had discovered tumours in her lungs just a couple of weeks before. Down the throat biopsies are the worst. I learned that from her. 

    And then they put you on the table. Inject the dye, and you slide back and forth through the doughnut hole of the machine for a few minutes, holding your breath and relaxing as instructed by the machine voice. That's it. That's all. Not a big deal for somebody who's done yoga all their lives. Breathing on command, staying still. 

    They take out the IV, you get dressed and wait a few minutes, ten or fifteen I think to make sure you don't get any reactions and then you go home. Last time I took the bus. This time I'll ask my husband to come and get me. I'm not quite up to taking the bus after a medical procedure anymore. Too much chemo, too much surgery. It's taken it out of me. I'm recovering. But I'm not who I was last fall walking into all of this as perfectly healthy, medically naive person. I'm not there anymore. 

    But I am feeling much better these days. Once I woke up again from the last round of chemo I did basically stay awake. Yesterday I walked to the grocery store after I got the birthday card for my granddaughter, and I bought an organic turkey breast, and I cooked it on the bbq. I even figured out how to do that, by turning off one of the burners and maintaining the lower heat that way. It worked great. I will do that again, and try it with other roasts too over the hot part of the summer. It's looking up a bit. That's one of the things that made me miserable during the hot summers here, not being able to cook, only bbq food. Grilled. Now I've discovered roasting on the bbq. I think I could do a better run at pizza's too. Rhubarb Cobbler on Sunday and a whole roast turkey breast dinner yesterday. I'm coming back. It's been a long time since I was able to cook. I even did the dishes yesterday, cleaned up afterwards and did the dishes. Good on me. And a break for my husband too. 

    My granddaughter sent me a text message yesterday telling me that she's getting her teeth done today, pulled. Four teeth pulled. And then it's her birthday in two days. My gifts all arrive tomorrow, flowers, cash and card. Should be good. And I'm glad she reached out to me. I told her about my CT scan today, and tried to give her a confidence boost. She can do it. We can do it. 

    My cousin who is finished her breast cancer treatment ahead of me wrote on my timeline, out of the blue that she is praying for me and wishing me good health. Interesting. I think it's because I haven't been writing cancer survivor myself or even saying it to her, ‘welcome to the club’. She must have noticed that missing piece in our communication. I chose to think that, and not that she has some instinct about my scan today showing cancer. That is only superstition. There was nothing really magical about The Year of Magical Thinking. The woman who wrote that has no idea how magical some thinking can get. 

    I had big plans for next week. It's written right into my day timer. All these big plans - I was going to host an it’s-over party celebrating the end of cancer, next week. Right there in black and white. That is where I thought we would be by now. All done. All better. Throwing a big party to celebrate the end of it. A bit of a f-you cancer party.  It was one of the things that kept me going through the chemo. Planning the party. That was back in the day when I thought 'a bit of light radiation at the end' meant that they would do it during surgery, one little blast of radiation, couldn't even feel it and then you're done. That's how I imagined it. Not this whole other thing starting up with this whole other set of doctors, nurses and technicians. 

    And I never imagined the week before either. I guess I thought I would be party planning, cooking up a storm, getting ready to fly off to Saskatoon for the conference, and then staying out west, perhaps at the ranch, recovering from some slight lingering malaise maybe, more of a treat myself mental recovery than a real physical incapacity and actual need to recover. Certainly I expected to be leaving the city by now and having a summer off out west, visiting family in Calgary, doing the BC tour, hanging out with my old friend L in Banff. Getting the benefits of being loved and appreciated the way you appreciate someone who's had a brush with death. That is where I thought I would be - starting next week. 

    And here I am instead. Working hard, physically working hard to try to get my strength back and heal up in time for a big round of real radiation. Through the heat of summer in the city, daily. For from four to six weeks. Thin skin and a level of fatigue and misery will be involved no matter what. 

    And still waiting on results. We will know things next week. Next Wednesday the lab results will be all in, and the CT scan will results will be in too. Plus blood results. They might declare me cancer free next Wednesday. It could happen, I guess. They will have enough information. Or there will be troubling signs and decisions to be made. That too. 

    What do I wish for?

    No more chemo. 

    Please, whatever else no more chemo. That first. 

    Then no more cancer. I would like to say cancer free. But I don't really believe it the way that my cousin does. I know that this cancer that I have actually does not work like that. 

    Anyways, time to go start getting bathed and dressed, ready for this scan, be back by noon, ready for the 'rest of my day/life' at least for a bit. At least for now. Keep healing. Keep getting stronger. That's the plan. 

    Dispatched: May 28

  • 27 May 2019 6:30 AM | Contact Me (Administrator)


    I need the extra feeling of self respect that you can get from new clothes that fit and look good. I need that bit of extra 'worthiness' added to my life. And I find it does not come with make-up, wigs and grooming tricks for me. It comes from fabric. I am the daughter of a seamstress. Fabric has meaning for me. I want my poor, sore boob to have new fabric. 

    Monday morning. This would be my old job, conference nearly ready, time to print off the registrations and pack up to leave for a new city and a hairy week of final conference organizing, plus the conference itself, and then the 'it's all over' pack up and train ride home at the end. And this morning I gave my replacement a long answer to a short question about delegate bags and the sponsor benefits package. Before 7 am. So I did have a bit of a feeling like I was back in it. And it felt good, especially without me actually having to get all ramped up to really do things. This year’s conference feels behind schedule to me, the conference is almost ten days later this year. But, they still haven't finalized the program, much less sent it off to the printers. Scary. But that's my replacement’s scary, not mine. I'm not going to stress about that. I'll just help her in the background as much as I can without actually taking on any responsibility. 

    So it feels good. 

    Yesterday I ordered myself some clothes to get me through radiation this summer. Tops as soft as a medical dressing, light and airy for the heat and sensitive skin. On sale so I bought a few of them. Clothes I can also wear on the bus and in the hospital as well as for naps on the couch at home. I feel more prepared for the future now. 

    As the weather warmed up too much for my comfortable chemo clothes the daily struggle of trying to dress myself in last summer’s clothes and being forced to keep looking at my twenty pounds heavier self in the mirror to see if the outfit I've put together from what I already have looks okay enough, and feels comfortable and not too tight was just really constantly discouraging. This way I can have this one little warm weather radiation wardrobe. I can try everything on once and know if it fits and works together and then simply just keep dressing myself in the 'uniform' every morning. The camisoles and tanks will probably light and comfortable enough that I won't have to sit around bare chested in the dark, trying to find spots where the fans aren't blowing against that raw skin. It'll be fine. I feel better. A lot better. It was worth it. 

    The mental benefit is more than worth it. Life looks better already. I made the rhubarb cobbler yesterday, I feel confident and alive again, I feel like I'm ready and will be able to make it through that next stage. It'll be okay. I'm surprised at myself. I never thought that I was such a 'clothing' person. And in fact most of my life I was happy to just keep on wearing the same old shirt over and over again with the same old jeans. Back then I was young and slim and beautiful and I looked good no matter what. Now that I'm old, and heavy, and damaged by rounds of chemo and surgery it's a different story. Now I need that extra feeling of self respect that you can get from new clothes that fit and look good. I need that bit of extra 'worthiness' added to my life. And I find it does not come with make up, wigs and grooming tricks for me. It comes from fabric. I am the daughter of a seamstress. Fabric has meaning for me. I want my poor sore boob to have new fabric. 

    These were important things that I spent money on this year. First the chemo wardrobe, then the sheet sets, and now my radiation wardrobe. They make me feel better. They are like a maternity wardrobe. They are a way of accepting what is happening with your body. I remember sewing myself a maternity wardrobe to wear when I found out that I was pregnant with my second son. I remember how that was different from the haphazard way I managed my clothes when I was pregnant with my first son. It was better to know it was coming and prepare and have the clothes for it and just wear them. When I was pregnant with my first son, then I just wore my jeans unzipped and held up with string and then long tops over that. It was uncomfortable, it was too hot, and I felt like it was re-enforcing a 'shame' about being pregnant so young. When I got pregnant the second time I made an effort to have a real maternity wardrobe. I sewed it all myself. Light dresses for the summer heat. 

    I had a fail on the post surgery wardrobe. I had wrong information too. Those special bras didn't work. First there was too much dressing, and then you wanted to leave it open to the air, not wearing a bra, to help promote healing and prevent an infection. Knowing what I know now I would have bought the camisoles and tanks right away for the surgery recovery. Really soft, loose button front shirts. It was discouraging for me to have so little to wear, and it didn't look good and I had to keep on messing with clothes that used to fit, and do not fit now. That made it worse. What I'll do as the new clothes come in is pack up all the stuff I can't wear now. Just pack it up in a box or bin, put it in the guest room and clear a nice easy spot for the small, 'radiation' wardrobe that will get me through the spring into fall season of heat and daily radiation. The new clothes should start arriving in the mail this week, or nearly next week. This new, 'radiation' wardrobe will arrive 'just in time'. Yes, if it weren't for the heat, if it weren't for the seasons, the 'chemo' wardrobe, with the additions of the camisoles and tanks instead of bras would have done me. It's the severe change of seasons, from -30 to + 30 that has necessitated the need for a distinct summer version of the chemo wardrobe. But it can still just be a uniform. A set series of outfits that will get me through the week, that I can wash once a week and be ready to go again for the next week. That's all I need. Something that works for traveling about the city, waiting in the hospital, napping on the couch, and running errands in the neighbourhood. One outfit that I put on in the morning and with the addition of a hat, shoes, purse and light jacket or sweater will get me through the day.

    It's Monday morning. I have today for myself. Tomorrow is the CT scan in the morning, first thing. Fast two hours before. So I need to get up early so I can get my two cups of coffee in by 6:00am, then I'll quit drinking and eating. It's supposed to take a couple of hours. Most of that is sitting around drinking the stuff they give you and waiting. The scan itself is not much. They do stab you with an IV, they do make you wear a gown and slippers. They do inject the dye when you're in the machine room. Then it's a case of breathing and holding still as they drive you back and forth through the machine. It is not like the MRI where you are holding still in the machine for a long time while it makes horrible noises in your ears, and you are claustrophobic. With the CT scan you are out in the open. You feel fine. They do make you wait five or ten minutes afterwards before they let you go. But I felt fine. I took the bus home last time, but this time I will ask my husband to come and get me. I am more beaten down generally than I was when I did this the first time. I was a full strength back then. Now I still have chemo damage, and surgery damage. I'm not nervous about doing the scan itself. I am still afraid though. I am afraid of the results. 

    It will change my life - in a bad way, if they find something new and suspicious in this scan. It will change my life in a bad way if it looks as if those lymph nodes in my chest, by my lungs might have spread cancer to my lungs. Those things could happen. Things look good for me on the surface right now. It looks like the cancer is all gone and we are now into prevention mode. And it feels that way to me too. That is the default for the moment. But the lab results could be saying something different. And the CT scan could say something different too. So I am afraid of all that. I don't want to know something bad that I don't know now. 

    It was different when I went in for that mammogram that started all of this. Then I knew it was something bad to begin with. I was not surprised at any of the results. I was just happy to be dealing with it. Now I do not feel something bad. Now I want it to be gone. I want to 'pass' these tests. I don't want them to find something small, something so small that I can't feel it. I don't want that story to start up. I'm afraid of that story. That is why I am nervous about this test. 

    But look at me. I was nervous about the radiation appointment. And then I had a good time. I did learn that it was going to be much worse than advertised by Baby Doctor way back at the beginning. A little light radiation at the end, that's all. That's what he said. He did not bring up the four to six weeks of daily treatments, he did not bring up the burns, and fatigue, possibility of leukaemia, destruction of healthy tissue. He did not bring up any of that. And my brother and everybody else also said that the radiation is not much compared to the chemo and the surgery. But. My radiation will cover a bigger area than their's. Methinks. So. We shall see. In any case I feel more ready for it now. 

    Dispatched: May 27

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