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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. 

Sunday, May 26

I'm Worth It

  • 6 Apr 2019 5:51 AM | Contact Me (Administrator)

    My finger tips are numb, and my nail beds are sore. I tried putting clear, strengthening polish on my nails. It does feel a bit better. But still not qood enough to really get into doing lot's of work or hobbies with my hands, some of my nails are loose and I'm afraid of the nails catching on something and just lifting off. It would be a different life for me for sure if my hands don't come back. Luckily I can still type. 

    Saturday morning. It snowed last night, but was spring yesterday with sunshine and double digit in the plus zone temperatures. When I went for my walk there was a bit of a breeze and it wasn't chilly, it was even kind of warm. Nice! And the neighbourhood was full of young people, dressed up in their finest cool duds, parading themselves and looking for mates, or just out feeling the spring with their main squeeze. It was a nice walk. And it was nice to step into that world right outside the door. That's the advantage of living in a trendy neighbourhood with trendy shops and restaurants. You get this weekend influx of young people, tourists from within the city mostly, from out in the suburbs, coming down for a day of shopping, dinner and then a club or bar, who are pretending that they live here. There was this buzz in the air. And it reminded me of myself as a young woman in the 1960s when I used to go down to Kensington and hang out in the head shops and whole foods cafes. It was fun to be out amounst these young people and feel that vibe again even though I am now this weird, puffy, bald old lady. One of the 'characters' of the neighbourhood. I am now one of the neighbourhood eccentrics that you would never see out and about like this in the suburbs. There are several of us in this neighbourhood though, so I don't stand out all that much. My presence here is expected. 

    Went to bed at 10:30, woke up at 5:30 a good seven hours sleep. 

    I didn't do much yesterday. I didn't feel that great. And I just didn't feel like doing much. Depressed? I don't always have to do stuff. Some days I can just relax. And I did my basic list. Up, bathed, dressed. A walk around the block, and I'm walking a bit further every day now. A nap in the afternoon. I finished reading Blood Brothers, the 1930s German novel. It was good. It felt like being back in the 1930s, the perspective, the slang all of it. And it was a taste of Germany at that time between the two wars. All those orphaned young men, raised in institutions. It reminds me a bit of the residental school stories. An institution is no place to raise children. These boys were always trying to escape. And they starved out in the streets and were brutalized even more out there, but it was still better than the institution.These boys ran away, and off to Berlin counting on being able to get lost in the crowd there in the big city and finding some way to survive on the scraps of so many people. 

    I had some text messages with my sister. She was happy to hear that all the post op dressing changes and other follow ups will be in the local clinic so we can just walk there together. Handy.  

    I had some skype text messages with my son. He said the flowers were nice. That's good. They got there. My granddaughter will have them boosting her morale, hopefully she will get a bit of an inner smile when she sees them. 

    We found out that one of our documentaries was nominated at a national film festival. I don't care about awards. But my husband was really pleased. I have been nominated, and won a number of awards at that film festival over the years, so it doesn't mean as much to me. But I have fond memories of being there, in that small town, celebrating films from across the country with all the other filmmakers. And our young, intern, first-time director will have a great time there. I also know that as this director goes around representing the film on her own, she will start to forget that she didn't do it all by herself. She will give herself more and more credit until she gets herself into trouble with a new project that she gets the opportunity to do on her own without the team supporting her. I've seen that whole cycle happen many times before. It's a natural part of a talented young directors development. All of this is nice. And it is nice for me to have that film festival moment in my mind. I was once that young director myself.   

    Today is Saturday. It feels like a Sunday. The days are all really blurry now with the decreasing chemo story and no medical appointments.  

    The only appointment I have next week is the Wednesday night breast cancer group and that one is in the evening. I'll get my husband to drop me off and pick me up again. 7:00pm to 8:30. So I can do as I please for all the rest of the week. And hopefully I will start to feel better as we go along. 

    I'm finding it hard to do too many physical things on account of my poor hands. My finger tips are numb, and also my nail beds are sore. I tried putting clean polish on my nails again, I missed it for a couple of weeks because I wanted to be able to show the doctors or nurses how the color was changing, my polish isn't quite clear it's a bit pinkish and opaque enough to cover the marroon spots/bands underneath. It does feel a bit better like this. But still, not qood enough to really get into doing lot's of stuff with my hands. It would be a different life for me for sure if my hands don't come back. Luckily I can still type. 

    Dispatched: April 6

    Chemotherapy and Your Nails

    How Nails Grow

  • 5 Apr 2019 8:23 AM | Contact Me (Administrator)

    What is bugging me the most? It's the fingertips and my tongue. It breaks my heart when I can't taste my food and I can't feel things with my hands. I know it's only your finger tips and your tongue and none of this is life threatening or even technically debilitating either. But they are both such an important part of being alive and enjoying life. Your sense of taste and your sense of touch. It feels like I've been mutulated. It feels like I've had my tongue cut out and all my finger tips cut off. 

    Friday morning. Around 6:00am. I feel like I have nothing to say. I was so happy on Wednesday, going to the hospital getting my repreive, finding out that I get a whole month off before surgery. Not even any appointments. And I think it's good to celebrate the medical milestones. But I guess also they don't really mean anything, they are articifical moments, arbitrary milestones. I still feel pretty sick, there are things that are progressing still, my tongue started to bleed a bit last night, just like my nose. And I did have that 'toxic' feeling. And also the assorted pains and pricks that go with that. Now that I'm not afraid of the big stuff happening to me, now that I've finished the chemo I notice all those little ones more accutely. And I guess they have also built up, over the course of treatment. This is the most chemo-ey I've felt. I should not expect to feel better all at once just because they've stopped giving it to me. I looked at my arm this morning. I still have a bruise where they injected me with the second last chemo. A simple thing like that, a simple, in the moment thing like that has still not healed. Why do I expect the results of the injection to be over any faster? It will take a couple more weeks before I really start to feel better.  

    I am at 10 days from the last chemo. That's a high, or more accurately low point in the chemo cycle. So I can expect to feel bad. Okay, so the nadir is between day 10 and 12. Day 1 is chemo day. So that means if I have chemo on Wednesday then nadir for that is between between Saturday and Monday the next week. And I should return to normal between Thursday the week followly that and up to the third week afterwards. Complicated. Espcially when you try to figure out how its working for the last 3, treatments which seem to be all in play at once. No wonder it turns into this blur of waves, of ups and downs. And interesting that this is the first time I've looked it up, I guess not, I was just living through it before, now I am wondering when I will start coming out of it. And I should've known it would be three weeks. That is the start of the window for surgery. The window for surgery is three to six weeks. That is when I will have recovered, and also still have enough chemo effects in me for the cancer to not be growing again yet. 

    So this is week one from the last chemo, cycle 12. Nadir tomorrow through to Monday. Ah, this explains why it's been hard to muscle through these weekends lately. I can expect to get better from this one sometime around next weekend or early the week after. That Monday. And because it is three weeks. I am still getting better from cycles 10 and 11 too. This weekend will be the end of cycle 10, next weekend will be the end of cycle 11, and the weekend after the end of cycle 12. That's the nadirs. I guess that doesn't necessarily mean it corresponds to the nerve issues, and nail issues. But lets assume that there is some sort of relation, that they work on a similar schedule. Then it makes sense that I'm still getting more side effects. Stinging pains and my nails are still getting worse. All this should actually really start to settle down this coming Monday, and then each week my Monday will be better than the week before. Something like that. Patience. 

    What is bugging me the most? It's the fingertips and my tongue. It breaks my heart when I can't taste my food and I can't feel things with my hands. I know it's only your finger tips and your tongue and none of this is life threatening or even technically debilitating either. But they are both such an important part of being alive and enjoying life. Your sense of taste and your sense of touch. It feels like I've been mutulated. It feels like I've had my tongue cut out and all my finger tips cut off. These big important sensory organs are gone right now. They are just numb spots. That is the worst part for me right now. 

    That is why I told the resident that in the end I think that the AC and the taxol have both been equally hard, each in different ways. I remember back in January when I thought the Taxol was such a relief. It was a relief even compared to the first AC which was my, 'This chemo isn't so bad, I've had hangovers that were worst than this' moment. And it was a big relief when compared to the last taxol where I knew better. Much better. 

    I will live and adjust even if my tongue and finger tips do not come back. I know that can happen. I know people who have to walk carefully ten years later because their feet are still numb. But mostly this will go away slowly.

    Here is one of the things that I find really interesting. If you follow patient forums about side effects and how to live with them you get a different story than if you talk to the doctors and nurses. It's like they are on two different planets. Curious. They talk amoungst themselves more than they talk with each other. Doctors in professional forums and conferences. Patients in group sessions, online forums. And Then the doctors and patients for ten minutes (if you're lucky) with each other, once every three weeks. You can see how they develop different realities. And also it does make sense that things like losing your hair are of vital importance to the patients, but because it's not life threatening, not of very much vital concern to the doctors. 

    Yesterday. I felt pretty good during the day, but I think I over did it, or just didn't take care of myself enough, or it's just the wave of how the chemo hits, but I started to feel toxic and worse by the evening and ended up barely making it to 10 o'clock. 

    We had a documentary screening. I didn't want to go downstairs and sit with everybody in that close space. So they put me on skype and I watched the screening room screen from my computer. And I could talk to everybody and hear everything. I guess the computer with me on it was placed up in front by the screen, and it had my skype profile picture on it. Very futuristic, we had some good jokes where they said hey you, get down in front and I asked them if they wanted me to take my hat, er head off. And it was a quick effective way for me to be part of the conversation and feedback. 

    But it meant that I didn't stop often enough to drink water, I went from 11 to 2 pm without drinking enough water, without going for my walk, without having a nap. Luckily they decided that three episodes was enough and they knocked off after that. Really that was about all I could take, and maybe even that was too much. I can't really just sit there and work anymore without getting set back physically. I really do need to maintain this toddler life style of small frequent meals/snacks, lot's and lot's of fluids  - a cup every hour while I'm awake, moving around and going for walks not just sitting or lying there in one position for more than an hour, and naps. I can't go for more than three hours without moving around, even when it's just getting up and down and walking around the apartment, or going for a slow walk around the block without starting to feel much more sick. I can't do it yet. I'm not ready. So it was a light half day for everybody else but it knocked it right out of me. Sigh. 

    Yes, I do want to be better right now. Yes I am discouraged that it's not happening. And yes, I also know better than to expect it so fast and without the accumulated effects of that last chemo hitting me the hardest of all. 

    I got some groceries yesterday, things I needed like coffee and mouthwash, and also one of those fresh, filled pasta packages with a homemade type sauce in a plastic tub. I'm trying to give my husband a cooking break without putting myself on the line for too much cooking in case I fall back too far in the evening. Fresh green beans. Chopped fresh from the bottle garden flat leaf parsely and basil. Grated Parmesan cheese. One bite of the meat sauce and my whole body wanted to gag. I don't know what it was, not the smell because it didn't hit me until I had it in my mouth. And not the taste because I can't taste anything. But it hit me hard - gag. I didn't try to make myself eat it. I just ate the noodle parts, with the cheese and tomato sauce and the green beans. But again I thought about how I am like a toddler. Is this how a toddler feels when they do one of their dramatic 'I can't eat this, I won't eat this' fits? And when you try to make the toddler eat it anyway is that something that is just as useless and probably guarenteed to put them off ever liking that food as it would've been to make me eat that Italian meat sauce last night? I remember being forced to sit at the table, looking at food that I knew I couldn't eat when I was younger. I remember forcing my kids to eat foods that they didn't want to eat when they were toddlers. Though I do give myself a bit of credit. I didn't do that to my grandkids. A new insight into an old, common thing, having that reaction last night. Luckily I'm a grown up now and nobody made me eat it anyways. 

    Though I did put the leftovers into a plastic container with the idea of freezing them for a future date when this chemo is out of me and I'm not reacting so strongly, and oddly, to foods I used to like. 

    I gained twenty pounds during this last taxol chemo. The resident on Wednesday says that every body responds to the weight question in the same way, with that sheepish shrug. I gained 20 pounds. I did, you did, we all did. It's the steroids. It's the great new anti-nausea medications that go with the nausea making drugs. It's also losing your sense of taste, and gaining a sense of revulsion even. Turning toddler? You'd think that would make you loose weight, but what happens is that you start to eat more bland foods, less healthy, bland foods. And because it's unpredicatble you don't cook meals or rely on meals for your nutrition, quick and easy bland snacks all day long instead of real food. I had a roll of wurthers caramal candies after I wasn't able to eat the meat part of my pasta dinner. Of course I've been gaining weight. And yes I understand that my body needs the calories to keep on rebuilding itself. Just enough calories. It's demanding that. And no exercise. My little walk around the block is not really exercise, nothing like my old exercise routine. There is that too. Of course I gained 20 pounds. 

    It was enough that I've successfully managed all these other health problems. Did my get up, bathe and get dressed routine every day. Drank all those extra fluids the whole time. Walks no matter how bad the weather. Naps. Getting to all my appointments. Being on top of my own health program. Doing whatever it takes to get to every one of my chemo treatments on schedule and at the full dose. And that meant giving up on a lot of social contact at a time when I probably needed it too. The food program has fallen off in the last few weeks especially, as the taste and gag issues got worse. It's really hardly worth it to cook at all when you don't know if you can eat it. And it's so easy to grab a cracker or a digestive cookie and keep hunger at bay that way.  I'm not going to bug myself too much right now, not about food. I am not going to force my inner toddler to eat food that makes her freak out. Or deny her sweets that make her feel better. It's probably not the best thing I can be doing for myself. I probably should not indulge this inner toddler me any more than any loving, caring parent would. But it seems that on this one I am actually more of the loving grandparent than the loving parent. Lol. 

    But I know I will need to get it together foodwise, and weightwise. And I want to get it together too. Just not right this minute.

    So, yesterday was okay even if I did wear down at the end of it. 

    And I slept deeply all night. And I had dreams, normal dreams that I remembered as I woke up this morning. Disappointment dreams. Things turning out to be not what I thought they were. People wanting money from me, being nice to me and treating me like friends, like we had real relationships, until I had trouble with the bank machine and couldn't get them their money, then you could feel the tense turn and knew that was what the whole friendship was about, getting money from me. My bank card didn't work. They'd changed it to this paper ticket that you put in the machine, and my ticket got soft and wrinkled after the first use so it wouldn't go into the machine properly. That's when the friend starting to tense and really follow me around as I tried to solve the problem. We were in some a big hotel thing that had atms, but also a bank too. That's when I knew it was about the money and that the friendship was false. Turns out the banks had replaced the plastic debit card with a role of paper tickets, just like door prize tickets, and every time you went to a bank machine you had to use a new ticket, you couldn't re-use your old tickets. I threw a fit and said how stupid it was, I was still throwing that fit when I woke up this morning. 

    I am worried about my cognition. It does seem worse now. Perhaps it's the blood pressure pills and not so much the chemo? It's hard to tell. Or even simply the stress. 

    I forget things. I mix things up. Mostly when I'm distracted. I did fine with my comments for the screening. I held up well doing that work, and also being sharp on the repartee and jokes. It's when it's quiet and I'm just doing routine things like running errands that I catch myself forgetting. How many times did it take me to finally remember to buy the mouthwash when I did my errands. Three times. That's not like me. Everybody forgets once in a while. But that type of repeat performance forgetting is not like me. 

    And I've noticed that my hands and mind are starting to do two different things. My mind will be thinking one thing, but when I look at the screen I see that I've typed something different, the idea is the same but the tense of the verb is wrong, or I get those; there's, theirs words wrong - everybody does that too, but I'm doing it much more often now, and I don't notice it as I do it. The mistakes are embarassing to read, I guess that is it, I don't catch them right away when I re-read something before I send it. I send it with those mistakes - and missing words too. It's not seeing it until later that frightens me a bit. Looking at it, looking for mistakes and still not seeing them. That is something different from making the mistake in the first place. Is that why I've backed off on writing narration for this series? Is it like the fact that I'm afraid to try knitting again? Afraid that I don't have it any more and not ready emotionally to face those kinds of truths right now? Those big, change the enjoyment and pleasures of my life adjustments that I might have to face? Maybe I'm just not ready to look that one in the eye, not quite yet. Not until I know if my finger tips and my sense of taste will come back. Not willing to deal with too many of these problems at the same time. 

    Maybe I'm becoming like the surfer editor. Holes in his mind and memory for sure, but he's still the better editor, he's still got it and can do a faster and better job than my nemisis who is younger but just doesn't have the talent. His brain even with holes in it is still more effective than her's working at full capacity. 

    So here we are. It's Friday. We can do whatever we want. Nothing all day if that's what we feel like. But that's not true. I still need to have my bath, do the whole lotion ritual, and get dressed. I still need to go outside and do my walk. And I still need to keep getting up and moving around doing things. I can't just lie around in my house coat reading all day even if it is a day off, and even if I would dearly love to do that. My body can't take it. I need to take care of my body. So it's all those get bathed and lotioned, walk around, move around, deep nap things. I don't get a day off from that. So that means that I only have a couple of hours, here and there that I can use to do what I want. 

    Okay, so the sun is out. I told my husband about my face and the horrors of this feeling like bugs are crawling on it. I guess it's feeling coming back in those rash areas. It's probably a good sign, but it is like being in a horror movie when that happens. 

    This face thing is weird. I've decided to take it as nerves signing in that they are back online. It may actually be further damage because while I am gradually losing old accumulations I am also at a high spot for further damage too. But I've decided to take it the other way, nerves signing in, "I'm back on line." It's all happening in the red rash area of mainly my cheeks, eyelids, across the bridge of my nose and forehead. Taking it as something similar to the itch that is getting more prominent in my hands. Recovery from the allergic and toxic effects of the chemo rather than a sign of new damage. 

    I choose to see it that way.  

    Last night I had a bit of a chat with T who had ovarian cancer, twice. She seemed down, partly got after me because I could go into remission after five years, and that my chemo worked, and her cancer will go on and on as a threat to her life. So I disabused her of that notion, told her about the ten year pill and that mine had already spread to my lymph nodes. But also, I think that she was depressed because she's done all these things with her life, the camp up north, the condo in panama, the lifestyle she dreamed of, and it's not satisfying her. T was down. She's perfectly heathy now, but down. Real life is still real life. That part doesn't change just because she has cancer, has survived cancer and it's treatments.

    And I remind myself. Not for me either. 

    Also the gang will all be arriving in Little Cayman today. That's the trip we would've been on otherwise. If I didn't get cancer that is where we would be today too. And we'd be meeting my son and his family there too. Yes. It would've been fun. And I also realize that the stars may never align like that again for everybody to be there all together. And in fact they didn't align this time either. But that's okay. Life will go on, and life will be good anyway, in any case. 

    I am disappointed. And probably disheartened over it more than I thought I would be. But it's not like some door has closed that will never open again. It's not that scale of sadness and disappointment. Just this bit of bitter sweet good memories, and you know that we are getting closer to the passing of an era. I remember the older generation from our first scuba trip, we were in our 40s and they were in their 60s and 70s still diving and I was impressed. But they didn't keep going for much more than five years after that. One couple joined us in Bonaire after they could barely dive anymore, and it was sad, they watched everybody else going out for their dives and coming back again, and remembered, but couldn't go themselves. It was sad. At that stage perhaps it's better not to go.

    The other thing is that I could've ignored the doctors and decided to go anyway and just not dive. Have a recovery week off with all my family and friends around. It's true, I would've had this week off. And I don't think I would've really been in any real danger from infections or collapsing during the trip. But my body is still too full of chemo. I'm still too much of a patient to be part of a big group like that, to adjust to all that social life, even if not much of the responsibilty would be on me. I'm still too tired,  too sick to just lie around at a resort. I'm not quite ready for that yet. Look at me. I didn't even go downstairs for the screening yesterday. No, I would not have managed the airports and customs line up ups and the flights themselves, simply being strapped into a small seat, crowded together for five hours. It's just as well we canceled and I didn't try to do it. 

    I sent my granddaughter a small arrangement of spring flowers yesterday with a note congratulating her on starting her braces journey with such courage. I'll send another bigger one, probably an arrangement with the little bear and a ballon on it next week when they actually do the braces. Those braces will stay on for a couple of months. Then they take off the braces, pull the teeth that need to be pulled. Let her poor mouth heal for a couple of weeks and then put on new braces after that. That's the plan. It will all be done by the time she's goes to college/university. That's what she wants. 

    I feel her in my heart. I know how I like the flowers that I have on my dinning room table, and how I feel the support - my brother and sister, the office, my children every time I see them. And I hope this does the same for my granddaughter. Gives her that sense of being loved and supported and also a feeling of my presence in the room with here when she sees them, that it reminds her I'm on her side, thinking of her. 

    Dispatched: April 5


    In the bone marrow, the spongy inner core of the larger bones in the body is where blood cells are made.  There are very immature cells called stem cells, from which the various types of blood cells develop.  These stem cells do not reproduce quickly and are less likely to be affected by chemotherapy.  As cells are maturing there are certain phases in which they divide faster.  It is during these times that the cells are most sensitive to chemotherapy.  The more mature cells can continue to become fully mature cells for several days after chemotherapy is given.  When these cells live out their life span, the circulating supply is depleted and the blood counts fall to a low point, the nadir.

    What Is Nadir?

    When discussing chemotherapy side effects often you will hear the word nadir, mainly in reference to the blood counts, particularly white blood cell count and platelet count.  Nadir basically means low point, however further explanation may clarify this term in connection with chemotherapy treatment.

  • 4 Apr 2019 6:12 AM | Contact Me (Administrator)

    It felt like the last day of school when I went out the door, out into the spring sunshine. You know, that last day when you've passed all your tests but you have to go back for an easy half-day to pick up your report card, and you know you eventually have to go back, but in the meantime you also say so long to everybody and head out the door for summer holidays. That's what it felt like. It was great! It was a fun wrap up for the whole chemo experience. 

    Actually yesterday was a great day. I did have to go to the hospital and at the beginning it was like the old ritual of going, getting your blood test, waiting for your doctor appointment, and riding the elevator up to the next floor where they do the chemo treatments. And I was unhappy that it was just the same when I'm trying to break out of that mode, trying to break out of habit forming months of chemo routine every Wednesday.  

    But then it turned. Taking the chocolates up to the chemo floor, delivering them with the joke about being addicted to the chemo drugs and wanting more even if I wasn't on the schedule anymore. It worked, they laughed a bit, but mostly they were all quietly busy, deep in their own thing, hardly noticed me and I did not feel like I was really part of it anymore. That was good. It was just fine with me to feel rejected and left out of the chemo world like that. I felt better when I went back downstairs to wait for my appointment. 

    And the appointment itself was different. It was a happy appointment. I had a happy and capable young resident. She was great about handling all the paper work I gave her to deal with, they got a kick out of my photo album of face selfies. They were charmed. And everybody was happy that my cancer was gone. She did the exam and couldn't find anything either. And she agreed with my surgery choices, saying it was almost a shame that I was doing any surgery at all. Dr. P the oncologist came in, and you could tell that he loved doing these chemo wrap-ups, successful chemo wrap-up appointments where all we had to talk about was what might happen as I recovered, how long it would take for my hair to grow back, the funny story of the guy whose hair grew back grey like before and then changed to the dark color of his youth, and also that it was common for hair to come back curly at first especially if you had curly hair as a baby. Dr. P thought my idea to get a base measurement and a briefing and exercises from the lympedia specialist was a good one, so he set me up with a consult for that, and also a CT scan - after the surgery. So basically I get a medical break, not just a chemo break, but a real medical break with whole weeks where I won't have to go to a hospital or see a doctor and can take a break from cancer and all things medical. Yippee! 

    It felt like the last day of school when I went out the door, out into the spring sunshine. You know, that last day when you've passed all your tests but you have to go back for an easy half-day to pick up your report card, and you know you eventually have to go back, but in the meantime you also say so long to everybody and head out the door for summer holidays. That's what it felt like. It was great! So I was glad I went, it was a fun kind wrap up for the whole chemo experience. 

    And then when I got home there were flowers from my kids. I wrote a chatty email back to them with a picture of the flowers in this apartment, telling them how they were just perfect for walking in the door in that happy last day of school moment. And this morning my daughter-in-law wrote back that the kids are having their last day of school before spring break so they are on the same page as me. It's a festive atmosphere at their house too. 

    Dispatched: April 4 


  • 3 Apr 2019 7:07 AM | Contact Me (Administrator)

     I am afraid to go the hospital and the chemo ward today. My body doesn't want anymore of this chemo. And I have to keep reassuring myself that it will be okay. I won't catch chemo just by being in the same room with it. No one will grab me, strap me down and stick an IV in me whether I like it or not. I will not be punished anymore. Over the last six months I've been trained that something bad has to happen to me when I go to this place. I'm like a dog or cat going to the vet. I know deep in my body that something bad will happen. And that I will have no choice or control in the matter, and it's really only a matter of how bad, and for how long. 

    Wednesday. It's my first no chemo Wednesday, but it still feels like a chemo day. I'm off to the hospital around the usual time today. So I have doctor anxiety. And I also have tempting the fates anxiety. I feel like I'm about to be punished for my optimistic attitude and for telling everyone that my cancer is now basically undetectable. I really do feel like I have tempted the fates somehow. Today I will be punshed. Today Dr. P the oncologist will tell me that the results of these blood tests looking for the protien markers for cancer have been positive and increasing. I have another tumour somewhere that they haven't found. My cancer metastized during the AC treatment and the taxol has not killed that part of it. It's a superstitious fear. There is no reason for me to think this except for the fact that I've been optimistic about the results and that I've shared my optimism. I've shared it with my family, my close friends and the my office job board members. Not to the bigger layer of social aquaintences yet. But still this is enough to bring terrible consequences down on me. 

    Is this why women put up with such extreme cancer treatments that weren't all that effective for so long? This whole punishment thing? The more you are punished the more likely it is that the cure will work? The more you suffer the better the result? I know logically, instinctively that actually it's probably the opposite. The less you suffer during treatment the better the result because your whole body will be stronger. The more you are happy and confident and optimisitic the better the result. The more you reward your emotional support team with good news whenever you get it, even if it may only be temporary good news, the better the result. That is what I really think. 

    But there is this other, superstitious side that believes in punishment, that believes in not tempting fate. This is what? Culture? An off shoot of religion in our culture? Something that the religious leaders tapped into in order to control their flock? I don't believe in it. And yet I feel it. I want to have this moment of complete respite from cancer, this moment coming up where I'm through the chemo, it looks like it worked, it is only a small surgery and a light radiation that I'm looking at for the future and that the daily pills won't be too onerous. That's where I want to be, in my mind, for the rest of this month. 

    I do not want to go to the place where part of the cancer has already spread and they can tell through the blood protiens. I do not want to go to the place where they will find cancer in my lymph node and have to remove lymph nodes all up and down my arm and shoulder. And I do not want to go to the place where they discover herceptin receptor cancer alive and well in my tumour or the tissue around it. Those places mean that I will have to have at least a year's worth of further chemo. Those places mean that I will have to have serious radiation. Those places will mean that I will have to redo this surgery plan and have a modified radical masectomy after all. Those places mean that I will probably develop lymphedema. Those places mean that I will probably have a secondary cancer somewhere else in my body. Lungs? Like my brother. I am naming all of these things that could still go wrong. I am naming all these things because perhaps that will counter act the way I have glossed this over when I talk to people that have been supportive but are not that close and don't need to know all the negative possibilities. When I'm optimistic I'm not denying or ignoring them. This is not hubris. I do know all these things can still happen, be happening right now in fact. I just don't choose to act on them until they are real, I don't choose to tell everybody about every negative outcome that I worry about until they start happening. I know that the real story will probably be somewhere in between. 

    It probably won't be that perfect outcome with no permanent fallout. And it won't be the total disaster story either. Not likely. Either way. But I am going to enjoy the good outcome for the chemo so far. I am going to enjoy that. This moment. Even if it ends this morning. Even if Dr. P the oncologist has his own agenda for this meeting too. Even if he is preparing himself with how to deal the blow just as I am preparing myself to get all this paperwork and other information dealt with. Even as I am closing chapters in the stories. Even as I am preparing to take chocolates and a card to the staff on the chemo treatment ward. Even so. I am being both superstitious about this and realistic. I'm not saying that I will never see them again, I am thanking them for what they've done for me during the course of treatment so far. Not tempting fate. But am marking the successul end of a phase. That's today. 

    Yesterday I felt okay and I did keep busy doing my day before Wednesday, have to get everything on my list done before Wednesday habit. I was in that get everything done by Wednesday, use that little window of good energy to do that. Pumped up mode. 

    I also took a picture of the cute puppy spun around in the washing machine card, and sent it to my computer as a jpeg. Now I can use it to write little ecards with a status update to all those people who have been extra supportive. I can use the same joke each time, but add my own personal appreciation to each person. Yesterday I did it as a board thank you for the flowers. I sent it to my replacement and late in the day she sent it on to the board. I got a nice emails directly back from board members. My old job.

    "To all of you on the board, I just wanted to thank you so much for the lovely flowers, helpful words and ongoing support as I've gone through chemotherapy. The results and the prognosis are both good. It's been a bit of a wild ride to get here, but your encouragement and appreciation have helped me land right side up. You're the best. Thanks so much." 

    I am forgetting things. I took the envelopes to the post office and mailed them, then the plan was to go onto the drugstore or grocery store and pick up mouth wash, but I forgot to bring my purse with me. So I just mailed the letters. 

    Next it was my family doctor. I was all wound up about that. And I stayed on a kind've super speed too. My husband took me there, we found a parking spot right outside so he came upstairs with me. It's never a wait for our family doctor and it's never a long appointment. I was stressed and had done all this pre-work in order to get him to write and fax that note for the pre-op doc. Turns out he knew exactly what to do. All this stuff that's such a nightmare with the cancer specialists doctors was easy. He took my blood pressure. The result was 'brilliant' 122 over 78. And he sat down and wrote a to-whom-it-may-concern-note on his prescription pad and that was that. Piece of cake. I took the original note. Made a photo copy, faxed it off to Dr.RichVain's nurse and made a copy for my file too, the one I will take to surgery myself, so it can be right there in case there is any confusion at the last minute when I go for surgery. Done. Check. 

    I went off to the drugstore to get chocolates for the cancer treatment staff. I had intended to get the mouthwash at the drug store too. Forgot again. Just plain forgot. This is getting bad. These are my good days and I am just plain forgetting things. Mouthwash is not the end of the world. But forgetting is. This much consistent forgetting is worrisome. And it happened again last night. I woke up this morning with a different taste in my mouth and my nose extra plugged with dried blood and realized that I'd gone to be without brushing my teeth or doing my nostril gel application. Doing my nose before bed and in the morning when I get up has become part of my daily routine. Forgot to do it last night. Plum forgot. Not good. 

    So the side effects of the chemo are still progressing, the toxicity is still progessing, it was the last chemo, but it is still having it's additional effect on my body. It added to the toxic accumulation. Going that last bit downhill before I start going uphill. All of me is geared to get set back again today. It is habit now. After three months it is habit. I know it won't be chemo. But perhaps that is why I have this idea that they will give me really bad news instead. 

    Why? Do I think I need to be punished some more? Or is it just habit? I have learned the habit of being knocked back every Wednesday. After three months of this it has become habit, part the of the routine of my life and body. And it will just take a while to unlearn this habit. My husband is trying to keep it. He wants to have chicken wings again tonight just like the old chemo days. He wants to maintain that little chemo ritual even though the chemo has ended. He didn't have the chemo itself, he didn't have the side effects. For him it was just a drive to the hospital and hang around reading and feeling good about himself as a good person. And a bonding moment for the two of us, going through this together. I don't want to keep this Wednesday habit. I'm stuck with it today, this first non chemo day is actually going to be a trip to the hospital anyway and wings for supper. I just hope it doesn't trigger some kind've body reaction even without the actual chemo being delivered. Somehow I have to will myself out of that. 

    And next week I will fight to make sure that doesn't happen again. 

    And I might still fight about the chicken wings today too. Maybe I'll do supper today. Maybe I'll walk over to Ta and get us Butterchicken pies and pavlova desserts. Treat ourselves that way. And take advantage of the nice weather and the fact that I'll still be able to go out and do things today after I get home from the hospital. Something to think about. My son is right. It's probably important that I go outside and go somewhere else today after I get home, just to prove I can. 

    And I'm thinking of bringing my computer this time and screening script episodes while I'm waiting instead of just reading a book. It would be another way to make today different from a regular chemo day. Not really sure if I want to do that though. It's such a hassle to pack up stuff when they call your name, and I won't have anybody waiting with me to just watch everything until I get back. 

    And maybe I'll forget my computer. 

    I've forgotten my purse twice already. Once the resident had to come after me, the next time I remembered and went back on my own. 

    I think I am stressed because I am still trying to get everything done by today. I think I am stressed because while I'm talking about the chemo being over it is in fact still running through my body and I'm getting this increased level of destruction going on. I should relax about trying to get everything done by today. And I should not worry that the chemo is still going on, it's supposed to be doing that. It will give me better lab results, the fact that it's actually still chemo in me killing stuff is good. I don't want any cells to be starting up and growing again between now and the surgery. I want this stuff to keep killing them until after the surgery. So chill on the increasing side effects. 

    My fingernails are turning color. They have maroon marks on them, especially on the right hand. My poor right hand with it's allergic skin reaction on the knuckles and now maroon marked fingernails, numb finger tips. 

    The allergic reaction did do it's Tuesday night flare up. I didn't take a pill on Monday night, but I took one last night. It worked, the reaction is back down again today. 

    We watched part 2 of the Ken Burns Cancer: the Emporer of All Maladies documentary series. This part was more about breast cancer. We got to see the horrors of what happened to my mom. They had a graphic of showing what all got removed in the old radical masectomies, and they also talked about how wrong it was, and unneccessary. This time they followed a young woman who had double breast cancer. Different kinds of cancer in each of her breasts. Cancer like my friend E in one breast, and cancer like mine in the other breast. The chemo took both of them back to nothing, including her lymph nodes which had already had cancer just like my breast. She had a double masectomy. Which is probably what I would've done in her shoes, on account of the aggressive cancer in the other breast, and nothing to match to with a lumpectomy in the other breast. And that was her good outcome. And she did do that I'm happy now, for the moment but I know it's not a certain long term thing. A qualified happiness. And they followed one of the women from the herceptin trials too.  

    George woke up more sick yesterday. He is coughing and miserable. He's still sick today. I don't think I will end up in isolation over it now. I just want to keep from getting it until after today's appointment. Get that over with and then have a couple of medical free weeks to mentally recover from all this. I have arranged it so that I don't have any more medical appointments until the week of surgery. That week we can start ramping up again. Monday family doctor follow up. Tuesday my sister arrives. Thursday is pre-op prep. Friday is surgery. After that I just go to the nearest clinic to get the dressing changed and stuff like that. If anything goes badly with that I will do like everybody else and go to the cancer ward. I'll still be immune suppressed.

    Henry See called. He's had two brain surgeries since we saw him last fall when we were both at the beginning of our treatments. Sounds like they didn't get it all the first time and it started to grow again, and this time he did lose function in his arm/hand and he did start falling down. They did a second surgery a month after the first one. And then he came back to the city for the follow up treatment. He's getting daily chemo and radiation together. He's living with his son and girlfriend and the girlfriend's mother is a caregiver anyway, so they've hired her three days a week. She comes in and takes care of Henry, takes him for his treatments and cleans the house and cooks for everybody. It's 6 hours a day, three days a week. His course of treatment will end in early May. There is no cure for Henry, he was told he had between 11 and 13 months to live. They are only going to try and manage it so that he lives a bit longer without too many symptoms. He was happy to chat with us. I made lot's of jokes that he got and laughed at. We talked about fatigue, I told him my brother's remote control story and he laughed at that. He's tired, he's reading a lot. He's alone somewhat but not a lot. His son goes to university. They are all home in the evenings and he has this caregiver in the house three times a week. He is a different man even these few months into treatment. Two brain surgeries, chemo and radiation plus a death sentence. That will do it to you. This is not the same guy who left here before Christmas talking about trying cannabis oil first to see if it would work for him. 

    My husband started telling him what to expect with the chemo and I had to insist that all the chemos are different that Henry had a different cancer with different chemo obviously, I never had daily chemo, and that only the fatigue part seemed to be consistent for all of us. And even that, it's different. It's different even the same person - me, being on two different chemo programs, the AC and the taxol, I saw the difference. So there is no reason to think that Henry's chemo experience would be like mine. 

    It was a heavy cancer night for us last night. The chat with Henry See. Watching the next part of the documentary series, mainly focusing on breast cancer. And being in the zone for chemo day today. I know. Today will stop short of being chemo day even if I will be on the cancer ward for most of the day. There will be no chemo involved today. But I will go to the hospital. They will stick a needle in my poor veins. I will go upstairs to the treatment floor and give them my card and chocolates. I will see the doctor. And then my husband will come and pick me up in the usual spot. I won't stay for the actual chemo part. But it will be like a mash up between blood test/appointment day and chemo day. So I do have that anxiety. 

    I do feel like they stopped the chemo just in time. When I look at my fingernails - that happened just in the last few days. When I see how I've started to have real memory holes now, and that just happened in the last few days. These are big things. I would not be able to take more of this without more serious consequences. So, yes, I am afraid to go the hospital and the chemo ward today. My body doesn't want anymore of this chemo. And I have to keep reassuring myself that it will be okay. I won't catch chemo just by being in the same room with it. No one will grab me, strap me down and stick an IV in me whether I like it or not. I will not be punished anymore. I'm just making up the stuff about new cancer protiens in my blood to try to deflect further punishment of by chemo for the moment. Something bad has to happen to me when I go to this place. I'm like a dog or cat going to the vet. I know deep in my body that something bad will happen. And that I will have no choice or control in the matter, and it's really only a matter of how bad, and for how long. And ironic because the really bad parts of chemo have always happened at home and not the hospital. I should be more afraid of being here at home. 

    I feel pretty good right now though. I have to admit that I feel fairly good. Not too sick right now. Hoping my window between this and when I get that damn cold will be long. Or maybe I won't even get that damn cold. 

    It's almost 8:30. Time to get up and at it on this weird day. Today it's write up the card for the chemo treatment folks. Work it out, then print it up carefully on the card and sign it. Attach it to the chocolates. Get my blood test. Take the chocolates upstairs and give it to the usual receptionist at station 1 to pass on to everybody, and/or nurse M if she's there. Go back downstairs and settle in for the long wait with my book and picnic lunch. Do my thing with Dr. P the oncologist. And call for my husband to bring me back home. And go for a walk. Go someplace new. Ta is a good idea now that I think on it. Screen the documentary rough cut edits by myself and make notes for the guys for their screening tomorrow. Today will be another cancer type day anyway. The last of the Ken Burns documentary is on tonight. 

    Tomorrow. Tomorrow my husband will be doing the screening with the rest of the team. I'll stay away on account of the germ situation in that office, even if my husband has caught it and brought it upstairs already. It's still better to avoid everybody that's sick. I'll have the morning to myself for sure. And probably most of the day. I can do what I want. I should do something different. Walk in a new direction - literally. Maybe even that up to the mountain walk if the weather is good. That will be enough. Methinks. 

    And then I'll have Friday too! And the whole weekend! I will need to get back onto doing housework. I've been noticing that it's getting a bit scuzzy around here. 

    Dispatched: April 3

    Ta Pies

    Ta pies is an Australian/New Zealand influenced  specialty bakery and superette, created in march 2010 by classicly hotel trained, New Zealand born chef Don Hudson and his Quebecois/Australian citizen wife Melanie Des Lauriers who also has an impressive hospitality resume.

  • 2 Apr 2019 5:57 AM | Contact Me (Administrator)

    I am mentally tired from having to do this to myself. Mentally tired from being both the toddler patient and the distraught parent that has to be strong. That is why I related to those toddlers who were being treated for cancer in the documentary. I have been living my toddler self all this time. That is who I've been taking care of, my toddler me. And my infant me before that. As well as being the distraught parent at the same time. Except for the fact that in my case the toddler me is always in the room so the parent me can't let loose on the distraught part. That will change as I get stronger and the toddler me fades away. Wahoo! Horrors! 

    Dawn and just a bit passed it, a touch of pink in the sky as the sun comes up over the buildings across the street. Today is Tuesday. Today is my old blood test day. And I still have a doctor appointment today, outside the routine, it's back to my family doctor to get my blood pressure checked and make sure the blood pressure medication is working, but mainly it's so he can send a fax to Dr. RichVain telling her that my blood pressure is under control and I'm okay to have the surgery. So it's not the usual routine. I'm going to see my family doctor. There will be carpet and wood panelling, soft light and pictures of the coral reef in this waiting room. I'll get in to see him within ten or fifteen minutes at the most. I might even be the only person in the waiting room. The receptionist has been there for all of the seventeen years that I've been seeing this doctor. He is just taking my blood pressure, not my blood. Everything happens in a calm and stately manner in that office. It's still a Tuesday medical appointment, but it will be different. I remember when I used to dread these appointments, I remember when I used to put them off because I hated the idea of seeing a doctor. Yes, there were memories of wasted time in crowded waiting rooms full of rambuncious children and coughing sick old folks but that's never happened at this doctor's office. He's a mainly a scuba doctor. He approves you for scuba certification. His patients are generally pretty healthy, though some of us are getting older, and not so healthy now. He's found an interesting little niche for his practice. 

    I am talking to myself about how it is different from getting my blood test and sitting in the crowded waiting room of the cancer clinic for one or two hours. Sometimes three hours. My longest was six hours. I take a snack lunch of nuts, cheeses and dried fruit. I bring a book and pretend I'm having a day at the beach with nothing to do but nibble and read. I check my email and play phone games between chapters. That will be tomorrow. Not today. And that will be it for my medical life this week. That's all. No chemo day. That also means no steroids, no stomach gas, no benedryl, no added antihistamines. No shakey weak mornings. No allergic reaction flare. Forget all the big picture stuff of numb fingers and tongue, ongoing painful rash, no hair, bleeding nose. Just in this simple thing. The idea of no immediate chemo reactions and drug side effects from the drugs to combat those side effects is enough to make me feel better about this week. 

    Monday was my best day all along. The strongest day that I had all to myself and my own schedule. 

    And I've just had another - big - insight into what's important to me. How I need to live for the rest of my life now that it's a more iffy prospect. And it's a good one because it does arise out of the way I've been living all along it just articulates it so that I can use it as a yardstick. Time. My time. That is really what I care about. Yes, I know I've been saying that. Time. Energy. Precious time. And that's how I've been living my life all along. That's why I never had the job I hated for 5 days a week so that I could do what I wanted 2 days a week. I always made it a priority to love what you're doing so that you never have to work a day in your life. It's all play. But I realize now that this extends quite simply to being able to schedule my own day. Unlike many retirees this won't be a problem for me. I love it, I'm a good scheduler and manager. I schedule other people's days. I make things happen that way. I need to be able to schedule my own day. It's more that just not having a nine to five job. It's having a whole day to use as you choose. And being well and strong enough to fill it. Monday has been my best day all along because it's a day that I have to myself. It's a day where I don't have to spend hours and hours killing time in a hospital waiting room. 

    Today is Tuesday. I feel okay. It will be a doctor day anyway. I won't have this whole day to myself. And I have doctor stuff that I need to accomplish and make happen. So there are priorities for this day too. Responsiblities. That too. It's one of those days. But also, yes I do feel okay. I do feel as good as I did yesterday, the Monday day. 

    Yesterday I did the rest of the medical stuff. It took longer than I thought it would. One of the things I did was get out last year's appointment book so that I could look up the date of diagnosis and also the first date of treatment. Well I knew first date of treatment off by heart. And I had to look through recent history to try and find the radiologist's phone number. I looked at my old schedules. Back then, in my mind I was doing stuff. And I was doing more stuff than I'm doing now, even though I was on the AC, or for sure at the beginning of the Taxol. But I see now that it just felt that way because I was expecting less of myself. I did one thing a day. And not a big thing. That was it. Yesterday I did laundry, and I did medical stuff. Two things. I was not doing that all along and I was not beating myself up about it either. 

    So. Yes. I should feel good that yesterday I did laundry. My clothes. And I got that medical stuff figured out and done. It's all ready to go. For today and for tomorrow's appointments too. 

    Yes, I am still living heavily in a medical world this week. It won't end until Thursday. Thursday will be my next non-medical day. It's hard to imagine it. I will probably feel okay on Thursday. I'll feel like this on Thursday. Wednesday will still be a lost day. But not necessarily Thursday. Thursday should be the day I give to myself. I will  have that whole day to do as I choose! This is more exciting that going to Bonaire for New Years. It's more exciting than going to Richard's place in Cape Cod. Those times are scheduled and doing what the group wants to do. Fun to be together, but lot's of scheduling around them. 

    Yesterday my husband woke up with a cold. He slept in the guest room so as not to cough and sneeze in my face all night. And we shall see what happens. Yesterday morning I was pretty stressed about it. I was mad and afraid of getting sick now, of losing these precious feeling okay days between now and surgery. Between now and radiation. There is still a long way to go. 

    And that road changes with every medical form I work on. I really looked at the Dr. B the surgeon's form yesterday. For treatment and recovery he wrote down the surgery plus ten months. This is different from Dr. P the oncologist's June 1st recovery day. Different perspectives. June 1st is one month after surgery, I will not have even started radiation at that point. And then it's however long the radiation is, and however long to recover from that. My husband will start getting his flashbacks when it comes time for surgery and radiation. He knows what that is like. He didn't have chemo. But he did have surgery and radiation. Will he also remember that's when he decided to change his life? That's when he decided he wanted to give up his bachelor life and have a woman in his life, living with him fulltime. 

    Got a call from the hospital yesterday. They changed my surgery back to May 1st. But I'm confirmed this time. So that's good. May 1st is more within the window of the cancer not having time to grow back before they remove it. That's especially important now that I'm having the smaller surgery. That smaller surgery has given me a few important benefits. They are paying attention to things like that, and even though it doesn't matter to me too much if they end up having to go in and do more breast surgery later on, it does matter that it might mean that the lymph node will be more likely to be negative when they remove it and then they can leave more of my lymph nodes intact. That would be good. And it also means that if it's not negative it will still not have spread so far. Though this cancer is not that fast, and I think if it does start growing again, if there are cells on the move, one week won't make all that much difference. But this is when we're going to find out about all of that. And yes. I am hoping for a completely negative result in the lymph node. That's what I'm really hoping for. Above all things. And so, yes. Doing it a week earlier might be better for that. But you know, I don't really know. I don't really know how it works. Trusting the doctors on this one. Even if they don't care about me personally, they do care about having a good outcome that reflects well on them. I don't think they would've put up such a fight to have the surgery sooner, on a better date if I had gone for the big one. It would not have been so critical. 

    Yesterday we watched the first part of the Ken Burns documentary, Cancer: The Emporer of all Maladies on PBS. It follows the book surprisingly closely, as far as I've read. I quit reading the book early on in the game because I felt like I had too much cancer stuff in my life already, and I wanted to spend my free mental time on something else. Now I am getting the cheat sheet version of the book in this PBS series. I even stayed up until 11 pm to watch it. 

    I do have to say that it was harder to watch it than to read it. This first part was all about children. Children were the first line of experimental subjects in the chemo research. Children's Luekemia. It was really hard to look at young children getting chemo. Young children getting ports for their chemo to go into. Young children getting chemo as direct injections into their spines. It was heartbreaking. Those beautiful young children who didn't know what was happening to them and couldn't make decisions about their own lives or futures - and their distraught parents. It was heartbreaking. And they were also surprisingly unflinching about showing how the chemo treatments for one kind of cancer then cause another cancer. And to hear the doctors and scientists justifying the unnecessary suffering that their young children went through before they died anyway. I'm an old lady. I've lived a full live. I'm aware of what is happening and I can say no. Tough to watch the children. Tough to watch the parents. And also tough to see the doctors and scientists and how they feel about crossing that line of pain and suffering. It is worse than I imagined. Yes. I shall have to be more careful about when I say no. 

    No chemo unless there is a clear goal for it, and a clear end where you say, yes we acheived the goal and you can go ahead and die the rest of the way normally, or no, it was not successful at the goal and we will stop now and you can go ahead and die normally the rest of the way. No experimenting on the dying me in a haphazard way. 

    And then there is the question of trials. I've seen more of the suffering, the real additional suffering that they can cause. I would've been more willing to be in a trial but I've learned a few things about that. For me, having seen the additional chance of a really horrific death I would only participate in a promising trial. I would find out a lot about what the trial is for before I agreed to it. Before I agreed to put myself, and even more importantly my family through the additional horror of any unproven treatment. And I would keep that part uppermost in my mind, not the slim chance of it actually working and making me better. 

    So. I am learning about cancer on TV this week. Cancer on TV and cancer in my body. Cancer in my life. 

    One in two men will have cancer. One in three women. That means that everybody will be affected by it. If not by having it themselves, then by living through it with a loved one. 

    Today is a medical day for me. But not my usual medical day. It's a short medical day. 1:15 is the appointment. I'll probably be out of there and by home by 2:00. And nothing bad will happen to me. This doctor is not going to make me sick deliberately. It's just a blood pressure test and paperwork. That's all. It still looms big in my mind. 

    And even if Wednesday, tomorrow, is a go to the hospital day, and even if it is a waste three hours of your life day, even if that all takes half a day no matter what. They won't do anything bad to me tomorrow either. I will still feel okay when I come home tomorrow too. Nothing bad will happen to me tomorrow either. 

    And then it will be Thursday. And I won't be all drugged up, chemoed up, and allergic. I'll probably still just be a lot like this. If I don't get my husband's cold. And I realized that it's probably not going to be that bad even if I do get it. This is the stage where I would be strong enough for more chemo, this is the day they would test for that. If I'm strong enough for more chemo, then I'm probably strong enough for a common cold too. Instead. Not both together, but instead. There won't be any chemo. It won't be both together. Just a cold. I need to start relaxing about these things, that stage is passing. 

    But my tongue is still numb. And I am just more worn down now. It's not the same real, chemo fatigue as earlier. This is partly just plain tired. Tired of it all. Mentally tired from having to do this to myself. Mentally tired from being both the toddler patient and the distraught parent that has to be strong. That is why I related so strongly to those toddlers who were being treated in the documentary. I have been living my toddler self all this time. That's who I've been taking care of, my toddler me. And my infant me before that. As well as being the distraught parent. Except for the fact that in my case the toddleer is always in the room so I can't let loose on the distraught part. That will change as I get stronger. Wahoo! Horrors!

    Cancer: The Emperor of All Maladies

    Cancer: The Emperor of All Maladies matches the epic scale of the disease, reshaping the way the public sees cancer and stripping away some of the fear and misunderstanding that has long surrounded it. The story of cancer is a story of human ingenuity, resilience, and perseverance but also of hubris, paternalism and misperception.

    Dispatched: April 2

  • 1 Apr 2019 7:01 AM | Contact Me (Administrator)

    I am grateful to all the women who were experimented on so that my treatment, horrific as it seemed to me, was in fact pretty standard. Those women died from too much AC so that I could get that right-to-the-edge-of-as-much-as-you-can-take dose. Women died or became permanently disabled so that the same thing could happen with the Taxol. This treatment, the schedules and dosages are standard now. But many woman suffered so that the medical profession could come to these standards and protocols. For all that this has been a miserable ride I sit here feeling grateful to all those unknown, unnamed women who were like a kind of lab rat for all of us women who came afterwards. They should be heroes. 

    Monday morning. Start of a new week. Start of my first official week without chemo. Wahoo! It has been harder and taken me longer to recover since chemo cycle nine or ten, so while I'm better than I was I'm no way in shape to be really back to my old life. I keep failing on my to do lists. Even making smaller lists, I keep failing. Or I am too ambitious in my list making, not recognizing that I was going downhill again. So there was this peak moment where I was doing yoga three times a week, making a reasonable list of to dos and doing them. And then the chemo accumulated more and I had to give up the yoga, and I did feel better for doing that. First I felt better for starting the yoga and then I felt better for stopping. It's all about timing and balence, there are no hard and fast rules. You just have to listen to your body. And then it got worse from there as the allergic reaction got worse and added that new drug that bothers my stomach, on top of losing my sense of taste. And I see now that distracted me from the growing numbness in my fingers and tongue. They are both numb as I write this, my tongue and all five finger tips. 

    But the chemo has stopped coming. There will not be any chemo this week. However much I am recovering now I can keep on. I can keep this ground that I've gained. And I can make progress without getting set backwards again. I still can't really believe it. The routine has become so strong that it does seem like just another chemo Monday to me. How long does it take to form a new habit? Is three months long enough? Is chemo Wednesday my new habit? How long will it take for me to get over that habit? And here is an interesting question, will my body still react as if there is chemo even after the chemo is gone?

    Here is why I ask that, My son and I talked a lot about the mental effects of these kinds of traumatic situations. We talked about how your mind can make the cycle that keeps it going, how your mind makes a feed back loop that can be hard to break out of. Habits forming on the cellular level. Interesting idea. My son said that the thing to do is to really mess with the schedule, let yourself know it's not chemo day. Go for a long walk on the mountain. Go somewhere else, so something completely different that is not chemo. Don't just let the chemo Wednesdays that are no more drift by now, don't let that habit stay entrenched. Do something different. Unfortunately, for this round anyway I have an appt at the hospital with my oncologist - so it will be like I'm still on chemo. The blood test and appointment will all happen on Wednesday, the old chemo day,  and they won't be followed by chemo but that'll be the only real difference. So. That's too bad. But on the other hand, I don't think the body follows a strict calender, I think it follows light conditions and patterns. So with the chemo Wednesday being exactly like the old pre chemo Tuesdays perhaps I can make my big change on Thursday, perhaps I can do something completely new and different on Thursday and that might help my body realize that it didn't go for chemo after the pre-chemo blood test day. Maybe that will work. 

    What could I do? One of my old things? The library? Could I get George to drive me to the library and pick me up afterwards? The botanical gardens? Maybe he could drive me there, maybe we could go for a little walk around the gardens? Not the most beautiful time, but it would still be nice to be there. Or walk someplace new in this neighbourhood? I like the independence of that. But where could I go that I haven't been over and over again in my daily walks. Could I get as far as Mont Royal? Could I at least walk up to the spot where I felt Moose's spirit run free with my husband and I on the day that he died? Maybe that would be a good moment. Maybe it would feel good to walk my old walk up the mountain. I won't be able to get up the mountain this time. But it will trigger lot's of good memories of long walks just going on the usual route to get there and back. Depending on the weather I will do that. 

    If my brain is feeling better maybe it will be as simple, and maybe as profound as picking up the granddaughter sweater again, the one I had to put down early on in the game when I was too continualy nauseaous to knit, and too brain fogged to keep going on the tricky bits. Maybe I am ready to pick it up again and continue knitting? I think by Thursday I might be at the same stage of health that I was when I put it down. Or perhaps it will be me, spending all day making a nice dinner? No, too soon. I won't have my sense of taste back by then it won't be that rewarding. 

    But I think my son is right. I do need to start doing something to break the chemo habit out of my body and brain. And in future weeks it can be my favourite excursions. In future weeks I can do the to the mountain walk, and the library and the botanical gardens, and atwater market to get plants for my flower boxes. Those are all things I can do even with a weakened immune system. As I get stronger. My old life. I need to make a point of it. Reclaim my old life. Reclaim me. 

    So, I just did a big long thing about not going back to my old life. And I realize now that I meant not going back to my old work. I want to do new work. I want to change the way I work. But there are things from my old life, the pleasures of my old life that I do want to start to reclaim. My old exercise habits. Even if I don't exercise that hard it was nice to get back into the yoga and I want to do it again. I loved those mountain walks by myself in all kinds of weather. I like knitting and taking pictures of my knitting. I love my little projects and hobbies. I love cooking and baking and I will start that up again too. 

    It's interesting that I liked to cook even when I was really weak and discouraged, but that I stopped when I lost my sense of taste even though I was, and am strong enough to cook right now. What's the point? Cleaning was nearly last. My plants are still on the list even now, they made it right to the end. Writing, going as strong as ever. That also made it right to the end. Writing and plants. I'm still paying bills and doing paperwork, but I'm not so good or effective at it now. I could not be doing the office job right now. Too much brain fog, as well as too little good energy time.

    I am remembering the story of the woman who went for a one year check up and ended up sitting in the same waiting room, on the same day, a year later with the same kind of light and weather as when she used to go for chemo. She felt sick and woosy leaving the clinic and the next morning she threw up, just as she had always done when she was on chemo. Your body learns, and remembers. It's not just muscle memory. Your body has other kinds of memory too. It's this too. And I think you do have to push against it. I think that is where I as the patient have to take charge and deal with it myself. 

    Last night 60 minutes had a feature on the new autoimmune approach to cancer treatment. Modifying polio vaccine. Injected right into the tumour where it causes inflammation, where it causes a reaction because the body decides to fight the polio and the toxins released as the polio dies kill the tumour cells. They are starting 'dose' trials in humans. The trials are for people who would die anyway. They are for people who have had all the conventional treatments and are dying anyway. But they look like they will work. If the dose is too high you die of the inflammation before the cancer gets killed. And it looked grim, it looked like a grim death, there was the beautiful young woman, all puffed up with steroids, dying because her dose was too high, her brain got too inflamed and she was partially paralized. She suffered. And then she died. But now they know. That was too much. It doesn't take much. So. In the next ten years this treatment will probably start to come online with the dosage more or less figured out. It could happen for me. Down the road. 

    What did I feel as I watched this. I felt grateful to all the women who were experimented on so that my treatment was in fact pretty standard. There were women out there who died from too much AC so that I could get right to that edge of as much as you can take, and then no more. There were women who died or became permanently disabled so that the same thing could happen with the taxol. These treatments, these dosages and schedules are pretty standard now. But many woman suffered. Suffered more than they would have if they'd died naturally, so that the medical profession could figure this out, so that they could come to these standards and protocols. For all that this has been a miserable ride I sat there feeling grateful to all those unknown, unnamed women, who were a kind of lab rat for all of us women who came afterwards. They should be heroes. Even if they were going to die anyway, that is not the point. They suffered. They suffered in their deaths more than they had to and the rest of us have benefited from their suffering. They are heroes those women. Not human lab rats. They knew they might suffer horribly. That was the risk they took. And some, many of them, did suffer horribly.  

    Probably it will be five years for this trauma to play out and turn into a life change and settle into what it's going to be and then I will live more or less like that for the next ten years afterwards. Sixty-eight, the years from now until around sixty-eight will be in transistion years. It will take a while for the changes to all play out. And from sixty-eight to seventy-eight perhaps I will be settled into my next life and living my new lifestyle. This makes sense to me. 

    I did not do any housework this weekend. None. I watered the plants. I went through my bottle garden and trimmed the roots, trimmed the flowering ends off the basil and the water cress, refilled the tank. I watered all the other plants. And that was it for housework. 

    I did do some office work though. I paid bills. I deposited cheques. I cleaned off my desk top. I packed away the big photos into a big flat box. I cleaned out the file holder beside my desk too. But I did not do the rest of the medical stuff I need to do. I did not get out files or make up forms for one of my doctors to sign. I did not photo copy the insurance file that Dr. B the surgeon signed so that it can get added to my file too. Didn't get to any of that on the weekend. So that's priority number one for today. That and laundry. 

    Dispatched: April 1

  • 31 Mar 2019 5:35 AM | Contact Me (Administrator)

    When I scratch my forehead above and between my hairless eyebrows it snows in front of my face. Scales of dead skin float down when I scratch my forehead. Who am I kidding about going right back to my old life? My nose is still bleeding all the time. My tongue is numb. My finger tips are numb. I am getting waves of nerve pain running through my legs... 

    Last night I had my first chemo treatment nightmare. I haven't had any up until now, I guess my brain had to wait until it was done before I could start having these nightmares about it. Or maybe it was just that I was still in the nightmare so there was no sense dreaming about it, not while you're living it. 

    I'm afraid. I feel like I have to go back to my old life, my exact old life only now I'm weaker and have numb fingers, and a bleeding nose, and random shooting pains, and chemo fog brain. I don't feel like I can do it. Correction. I know I can't do it. I can't do it now. I put up a good front walking around with my son on my strongest day, and then again on the steriod day right after chemo before the weakness set in, and having the temporary happiness of my son nearby was also a boost. But I know I can't cope. I know I can't do that every day. And I know that even that burst of temporary energy and ability is not enough for me to be able to handle my old life. Juggle all the things of my old life. I can't do it. I'm afraid. 

    And not getting this paper work sorted out so I can get the disability insurance. Not even being able to do that one simple thing. 

    I feel like I can't do it. I'm afraid of the future now. I don't think I can cope with it. I feel like I'm being funneled back to my old life, only know I will have to live that life with less energy, less health and resources and lost time too. If I go back to my old job I will have to fight my way back across missed deadlines, lost time, lost funding opportunities. It's overwhelming. I'm afraid. 

    And the idea of a new life, of making a new life that I can manage, and where I will even thrive and prosper is slipping away from me. The old life is bigger, stronger, expected, I spent a long time building and nurturing that life. It is pretty strong. The new life plan is fragile, delicate, like a seedling, It seemed so real, and possible when I was completely down and not expected or able to do anything at all. I hung on to it. That is what I was staying alive for. I wasn't staying alive to come back to this old life. I knew then as I know now that it will be the frustrating case of me trying to be who I was when I'm not that person anymore instead of accepting the new, and okay, but a different person that I'm becoming. 

    Even though I'm still feeling the chemo effects just as much as ever, I haven't even passed the first no chemo week, there is already social pressure to get back to who I was. "You're done. Yippee. When will you be back at work, family responsibilty, social responsibilty." And I guess that is the danger of making a big deal out of successfully completely these different treatment phases. People think you're better. And they expect you to be back to who you were. And I don't think I want to go back, I want to go forward, I want to go forward to somewhere else. 

    And it feels especially bad when I am sitting here in the deepest trough of accumulated chemo and accumulated time served as a chemo patient, not expected to do anything or be anything for the past six months. Suddenly I feel all the expectations coming back. And this is my own fault. I am the one who starting taking an interest and looking back at the same time. Back into my old life. Which I liked. I liked my old life. But it's not the right life for me now, not now that the earthquake has happened and I know that I live on a fault line. Now I need to start building my earthquake resistant buildings I need to make these adjustments in my life. Nurture that tiny little seedling even after it's protective little cloche has been removed and the strong sun, winds and rain, and infestations of molds and fungi can get at it. 

    Last night I had my first chemo nightmare. I think this is also a sign of the change between then being right in the chemo and going forward, coming out of it. And the nightmare came because we watched Unbroken and Before I Go To Sleep. Two movies that centre around torture. Physical and pyscologolical. That too. And here is the thing, with just straight physical pain, or torture, or whatever, you always have the option of just exiting your body, being somewhere else. But with mental torture it's different, you don't get to escape that easily. 

    Chemo is like this perfect exquisit torture. It's probably a good thing that the chemo stuff itself is so expensive otherwise it would probably be used for torture more often. It is physical, and it's mental, and it's random, the patient/victim does not need to be told what the effects of the injection will be, when they will hit, or how long they will last. Maybe for your lifetime. Maybe for the rest of your life. Not the healed after-effects, but the active ongoing effects, the actual torture part and pain just randomly happens when you least expect it. How great a torture system is that? 

    Years ago I told my sister that I wasn't surprised that she was all jumpy and nervous as she was getting her teeth remade with twice a week sessions in the dentist chair for root canals and implants. Her body understood that she was being tortured. Her body reacted the same way as a torture victim would. Why wouldn't it? Even if she knew this is what she wanted, even if she was paying the dentist a lot of money to do that to her, in the most basic, deep understanding of the body she was being tortured. Of course she was jumpy. Her body was trying to make her more alert and able to get away, save herself before the next torture session began. But at least in her case the physical pain connected to the actual event and to an actual place. She knew where it came from. Even her body knew where it came from. The dentist's office. 

    Chemo is not like that. Sure you feel the injection. And you might feel some immediate effects from the chemo itself, but the real, debilitating effects happen from within, randomly not connected with the chemo room. How exquisitely awful is that?

    Here is my chemo nightmare. Picture a long hallway, like a hotel hallway with doors on each side. Each one of these rooms is a torture chamber. I start at one end of the hallway and get pulled into the first room, injected and I overhear talk of dosage, effects, the torturer trying to give the maximum dose that will do the most damage and still not quite kill me. And also the most effective cocktail that will cause the most damage to my particular pyschi. Is it hallucinations? Or perhaps sudden unpredicatble muscle failure that knocks me off my feet when I least expect it? What about sensory input? Maybe something that creates a visual fog that you can't see through? The bag of torture tricks is endless. It's only a matter of experimentation to find the most effect, and fine tuning it so you can use it to the maximum effectiveness without actually killing the patient/victim. 

    In the torture chambers the chairs are like the electric chair, an executioners chair, The nurses wear black hoods on their faces. Executioner hoods. The doctors stand apart behind one way mirrors, but they are not really out of sight, if you look they are just like the Wizard of Oz behind the curtain, pulling the levers and strings. And more than that, they keep forgetting and walking out from behind the mirrors to make suggestions and adjustments. And you can hear the discussions. You can hear the details of what could happen to you as the result of each injection, but you never learn enough to know which injection you got, you never really know what to expect after they inject you. 

    You get an injection and they push you back out into the hallway. You are all alone in the hallway for the actual torture part, whatever it will be this time. You are all alone in this long hotel style hallway with all those doors leading to all those other torture chambers. You don't even have that weird intimate relationship between the torturer and his/her victim. You suffer the actual torture part all by yourself in the hallway. 

    You suffer the symptoms.

    Until they come and get you, come out of a random door, pull you into any one of the torture chambers along the hallway. Chatting away amoungst themselves. You are generally just weak and recovering, starting to look around when they come and get you, sometimes more weak, sometimes almost strong again. They never see the actual torture itself. They are separate from it. Their lives are social. Your life is alone out in the hallway. Alone in your body. 

    Some of these tortures leave physical marks, even if they happen internally they still leave physical marks. And the nurses and doctors can make assessments based on them. Some only leave mental marks. And that is trickier for them. And they miss important signs, and people do die from those. You see them inside the torture rooms, stacked up against the wall, waiting to be disposed of. There are other hallways, other victims alone in their other hallways. You pass by each other in the torture chambers, one getting taken out as you come in, someone else on a gurney coming in as you get taken out. They are the only ones who will meet your eye. Fellow prisoners/patients. 

    There was a single door at the very end of the hallway. I saw it every time I was in the torture hallway, going through my various types of torture like the seven plagues of Egypt ( see how I'm managing to fit most of the movies I've been watching into this nightmare?) 

    I have mixed feeling about that door. It's the only one with light coming through around the edges. It's different from all the others. But I don't know if that's a good thing, or if that's a bad thing. It's like the shute on a pinball machine. You get bounced from side to side through all the flippers and boingers, but then everybody eventually ends up going through the shute, and from the top of the table you can't see what's down there on the other side of that particular door? Is it an end? Or is it a beginning? Can't tell. And there is not guarentee that you will get there either. Those stacked up dead ones, either dead physically or mentally or both, don't get there. They are either stored until they actually die, or they are sent out the waste disposal shute. 

    That was my first chemo treatment nightmare. I had my first chemo treatment nightmare last night. I only had it after my last chemo treatment. 

    I won't have to go through any more of these doors. At least not for a while. At least not until after the surgery. 

    I could be done with chemo for good now. I could be allowed to have nightmares, face the horror and then get on with normal life afterwards. Or, and here is some of the exquiste torture part, I could need to start chemo again fairly soon, or a recurrance or secondary cancer may start up and I could need to start chemo again any time in the next few months to few years. But that's not all, I won't be safe even then, another cancer could start up years and years from now, a genetically related cancer, having breast cancer does not get me off the hook for colon cancer or malignant melanoma either. It is not a pick one sceneario. I am still at equal, additional risk for both of those. And yes, I realise now that is one of the reasons that the sibs and I are closer than most, and stick with each other. We are the ones. We are at greater risk of losing each other. And we also know more about what this whole process is like, from our mother, from our lives growing up with cancer. And even if I don't have to go through chemo for any of those reasons, then there is always the chance that this treatment itself, these chemicals, the radiation, the treatment itself can be the cause of a new cancer developing, and needing chemo for that. 

    So while I've started to have the chemo nightmares, while I appreciate that chemo is it's own kind've torture both physically and mentally I also can't just deal with it as if it's over now, deal with it, however hard that is and move on. The horror of this is that it is like a horror movie where Carrie's hand comes out of the grave at the end. That is this story. There can always be a sequel. It won't be the same. It might be better, it might be worse. But with the chemo story franchise there can always be a sequel. 

    The cycle between sequels can be as small as daily chemos, or as big as 15 year recurrances or new cancers arising. But it's a cycle. If I don't get a recurrance or a secondary cancer, or a new cancer arising from treatment it will be simply because I die of something else before that particular cycle can complete itself. That's all. It's in the cards now for sure. But that doesn't mean that I will get to play all my cards. And no offense Dr. RichVain pre-op doctor I would rather die suddenly of a heart attack than die being treated with chemo. Your blood pressure medication is not going to save me from a death I don't want. It's going to save me from the death I do want, so that I can survive to the next cycle of the death that I don't want. 

    Facebook has started to give me memories. It tells me my old posts from this day in other years. Yesterday it was a post about a March snowfall last year, today it is a post saying I was off to Waskagnoish and Chissabea from a different year. I think  it was a film shoot. I think it was that trip. We were working on a film for the new cultural center and museum.

    Ironic that facebook should be doing this now, as I feel my way forward into who I am going to be, and yes, I am using the past as my guide too. And there is  a reason that I've been going through old pictures and memoriablia, sorting these things out, there is a reason that those old photos were finally my housekeeping priority. I'm not going to throw the baby out with the bath water, I am going to speak in cliches a bit, I don't have to keep inventing and re-inventing the wheel. These are tools that I can use to create the infrastructure and scaffolding of my next, new life. The strengths of my past life. And also knowledge of the weaknesses. And even more than that, seeing what has changed. When I see these parts of my old life unexpectedly, come upon them out of the blue but from this new perspective I can see how I am different now and what still works, and what doesn't. 

    That trip to Waskagonish.

    Here is what comes to mind, and strongly. The the forest. Driving up there through miles, and hours of northern forest. I have been in the city all winter. My biggest nature escape all winter was that walk on the mountain with M. I miss nature. I hunger for it. This perch on top of this city building where I am like a bird in a tree is okay and better than nothing. But I miss being down on the ground, right in it. I miss that. But I don't miss the work. The work was just an excuse for the trips. The work was just an excuse to physically be in those places. To be away from the city, out on the land, whatever the land, whether it was the Arctic or the Philippines, it was still a way to be away from the city. 

    For me the most profound moment in H is for Hawk is when Helen talks about the chalk landscape and how it is wrapped up in a British idea of itself, a romantic British idea of itself that is false. And how the different animals and plants that live there now have pretty well all migrated from somewhere else. And how false it is to make an identity out land, your land, because the land is changing too and it's own thing and doesn't care about the people and where they come from, anymore than it does the animals. All of that is a romantic falsehood that causes damge to the minds of the people and then also to the land. 

    I've never seen a chalk landscape, I can't even imagine it actually. And I didn't know that there was this whole British cultural identity attached to it. But yes, I see her point generally, and I think in particular how it has harmed so many of my First Nations friends, this inherent idea that somehow they are particularily attached by birthright to a particular kind or piece of land, that these are reciprical bonds that cannot be broken. The elders who have a different understanding of land, they know that it is also an ever changing, ever adapting thing and that nobody gets to sit on it expecting certainty with absolute smugness and sense of ownership, and merely by thinking of it that way you have betrayed your profound ignorace of the land and how it works. And you have hurt yourself, because that kind of smugness blocks your open mind and any chance of real truth going in. 

    And what about me? What about me when I keep talking about the prairie, or the bush up north. What is this? Where am I in this story? And what does that mean to me? And how should it play out in my life and my future? As I make decisions going forward how shall I understand this? I know this pull of the land is important to me. I know it needs to be considered. 

    And what else do I know? I know that my so called happy place is not at place at all, that it is a condition of light, whether it be the golden magic hour on the prairie, or northern lights, the sky with three suns on a really cold day, or a big golden sunset over the ocean, or sun breaking through storm clouds. It's not even a nice day, or a perfect day. It is spectacular light. Whereever, whenever that is, that is my happy place. My happy place can be anywhere. Anywhere you can see the sun. That is my happy place. Sunrise, sunset. But also big storms, and big night skies. Stars. Stars are suns. That place. 

    Do I feel like I have this inherited right to land, an inherited right to any part of this planet? Not really. I like the prairies in particular because that is where I grew up. I'm familar with those skies and that light. But I do not need to be there. The prairies do not need me there either. I like the mountains too. They are a landscape that has not changed since before I was born and is unlikely to change in my lifetime. Sulphur Mountain will always look like that. The snow will come and go. Light will come and go on the top of that mountain but the shape of it will stay the same in my lifetime. When I look at that mountain it won't ever be like going back to an old city neighbourhood and discovering that a whole block of houses has been torn down to make way for a shopping mall. I like Sulphur Mountain, but Sulphur Mountain does not care about me. The Three Sisters don't care about me either. And they don't care about their names either. They just are. They are familar to me so I have an extra attachment to them. But any place can become familar. All you have to do is stay there for a while, stay there and pay attention. That's all it takes. 

    So yes, I feel like I need some nature. But it can be any nature. 

    I have to have medical care. I live on a fault line now. I live in an earthquake zone. That is fixed. I won't be moving going to the States. No permanent residence in a small town, or at least not until we pass through this active stage where tremours and additional quakes are still possible and maybe even likely. Realistically that means here, in this apartment, in this city. 

    It means that in the near future I'll need to get my nature fix within those confines. More walks on the mountain once I get strong enough. Yes. I can even take the bus up, walk around up there for a while, on the flat, and then take the bus back down again. I can do that temporarily. As I get stronger. 

    It means that I can start to go back to the Y, and do my build up from that side too. Swimming. Sauna. The whirlpool. I can get into all that once my immune systems comes back, and it probably already is good enough, but there are still too many other things like surgery to go through - and this continuously bleeding nose is a good reminder to be sensible about this. 

    I realize that what I am saying here is that this transistion requires that I make even more of a commitment to my health, not less. My health until now has been so weak that the 20 minute daily walk, the 45 minute daily nap, early to bed, high protien low fiber diet with plenty of fluids was enough, and a daily journal entry for mental health were as much as I could handle. Now I will need to increase the physical and mental time I give to myself. So the thing ahead of me is not to start picking up the reins of my old life as I start to feel stronger. The thing is to stick with this new selfishness, er, selfcare and use that strength to simply build myself. My body, my mental health and my physical health. Both together. There will be pressure to pick up the reins of my old life, I may have to use some of my new strength to resist that. And even from within me too. It's not all just outside pressure. Just get stronger. Just get more healthy. Mentally and physically. As best I can. That is all that I have to do next. Mostly. 

    I'm still deep in this round of chemo. Still feeling the toxic effects, but it's starting to ease up already. Sunday. Monday was always my best free day. Tuesday and Wednesday will still be medical appointment days and my responsibilty/chance to get things on track. But the blood test will be the only invasive procedure. The rest is all just talking. And there will be no chemo. Thursday, Friday, Saturday, Sunday, will all be recovery days. There will be ups and downs. Next Friday will be my ten days from this last chemo, so it will be a weaker day. It won't all be clear sailing some of these effects will still be coming in, even as we're not adding to it anymore. The past chemos will still be working. Which is probably good, which probably makes it better as far as keeping the cancer down until after it gets removed by surgery. So don't begrudge that. 

    That is what should be happening in this time coming up. Forget getting more involved with work as I feel stronger. Let it go, it's still too soon. Priority number one is still plain old health. The walks, the naps. Get that exercise form signed by Dr. P the oncologist, then sign up with the fitness assessment folks at the Wellness Centre. Take the laughter workshop. Join the new breast cancer group. Stay in that zone of treatment and recovery, don't try to step out of it, don't get pulled or pushed out of it by my old life. So easy to fall back into. Familar land. It is the land I think I've inherited, but that's not true, it's not true anymore than the physical land, nobody owns it, nobody has to live there, it is all adaptable and temporary. Don't delude yourself that it has to be real or permanent just because it's familar and it's what was. Be more now. And health recovery, including mental health recovery in preparation for more kinds of treatment, that is the game and the priority now. 

    As well as feeling your way forward. As well as feeling your way forward through this new landscape with fresh opportunities as well as earthquake devestation. Don't just start move into your broken down, smashed up house and try to fix it up as best you can. Scout out this new land. Accept the earthquake and look for promise and new growth as well as regrowth. Make room for the better adapted immigrants. Celebrate the change, don't try to hang onto an imaginary past that is no longer. And probably never really was anyway. Get up. Look around. Make an assessment as best you can with the information you have and start off in an new direction. Go forward. 

    I was freaking myself out because I was ramping up to just do what I do - again. But that's the wrong thing to do. There are things I need to do, there are many of my old skills that I need to use to do them. But they are different things. I need to use my conference building skills to push through these doctor appointments and get the information out of them that I need, get those doctors on track and signing the papers I need signed in order to go forward with all the next parts of my treatment, and financial requirements. I'll be using old skills to do that, but it's a new project that I'm applying them to. That is my project now. I need to focus on that. Focus that talent, and limited amount of energy on the things I have to do for me. The things I have to do to get me through this. Calm down. Keep that focus. That is this week coming up. That is how I will occupy myself, that is how I will spend my precious bits of energy and time. Dealing with doctors and insurance companies. Trying to ge them to do what I need from them. 

    And continue this health program. The daily walk. The daily nap. I don't need to push it forward now. I'm still too toxic and full of chemo stuff to push it for a while. Give myself these two weeks at this exact same physical pace, perhaps merely lengthing the walks a bit, that's all. I'm still going through chemo right now even if they aren't adding any more. It will take time for the old chemo to pass through me. I still need to stay on that program for the next two or three weeks. Then perhaps I can go forward from there. Then perhaps I can add onto what I'm already doing. 

    All of the new stuff that might start to happen in the next few weeks should be new stuff. Not simply returning to old stuff. Let those guys go ahead without me. They can do it. Don't just set up shop in that damaged building with a shakey foundation and cracked windows. Gotta make that assessment first, then tear down as necessary before you can rebuild or even just repair. Give it good and real time for that all too happen. I rush ahead too much. I get ahead of myself. Don't do that. Slow down. Live where you are. Live when you are. Be in place. Be in time. Time and space really are relative. Be in your mind. Be in your body. Mind and body: are they relative to each other like time and space? Interesting. 

    When I scratch my forehead above and between my hairless eyebrows it snows in front of my face. Scales of dead skin float down when I scratch my forehead. Who am I kidding about going right back to my old life? My nose is still bleeding all the time. My tongue is numb. My finger tips are numb. I am getting waves of nerve pain running through my legs, mostly my left leg but also my right leg. All of these things can still get worse before/if they get better. Just because I'm not in the torture chamber does not mean that I'm not out in the hallway living out the rest of this torture session on my own. Be nice to me. Be nice to me about this. I'm living through an earthquake, and I'm being tortured at the same time as I try to live through it. I have to be the first one to get it, and to step up, and just give myself a break. Otherwise how can I expect anybody else to do it?

    Dispatched: March 31

  • 30 Mar 2019 6:55 AM | Contact Me (Administrator)

    End of chemo - while this is the big hump and I am over that, it's also not really the end. There is still the surgery, and the radiation, and also that hormone therapy pill that I'll be taking for the next ten years. And the possibility of a secondary cancer too. Or a recurrance. But still. Enjoy this moment. A lot of things could've gone badly and they didn't. And the chemo worked on this cancer. And that's a big one. That is the big one. 

    Saturday morning, back to something more like my usual routine, is this the first Saturday of the rest of my life? It feels sorta like that, and sorta unbeleivable that could be true. Can it really be? Is the cancer really gone? Is the chemo really over? Do I really get my body back? 

    My arm is sore, my forearm. My veins aren't just ruined. They feel ruined too.

    But I feel better, I feel like someone who can just get better now. There is no reason my body should be feeling okay, this is the same old routine as far as my body is concerned. These veins, these cells do not know that was the last chemo. Taxol still flows through my veins just like it's another chemo and there are ten more to go. I won't really start to feel the difference in my body until after next Wednesday, until after the chemo stops coming. But I feel the difference in my mind already. And I think that might be affecting my body. I feel better. I don't have that all over sick feeling that I started to get along with the increased allergic reaction around three quarters of the way through. Perhaps we've got the allergic reaction under control? Perhaps it's the blood pressure? Maybe that's what's making me feel better, getting the blood pressure under control? Maybe it's all in my mind, some anti-anxiety drugs, knowing it's the last chemo and I won't have to do that again, and spending time with my son returning to my own personality, being loved for who I am, and also how I have changed too. Perhaps it's that. Probably it's that. 

    My son and I have more in common now. We've both been through a deadly health story. We've both had to survive it, and also find our way back to being ourselves but not. Ourselves in this new configuration of body. And we talked about it, compared notes on what it felt like, found commonality. Turns out the trick of grabbing a shopping cart in a big grocery store and doing your health walk that way, hanging onto the cart in case you need support, and being in a temperature controlled environment with enough space for a recovery person to walk in and help themselves get better was a universal discovery that we each made independently. The two of us from our very different illness going down a very similar recovery road. How do you get better? How do you get yourself better. 

    My son's recovery from that horrific gut surgery took longer. But he only had to do it once. My recovery from rounds of chemo happened in three week intervals, but it had to happen over and over again. I had to recover, get set back, and recover again. There is something different mentally about that. And I guess also that you're doing it to yourself. On the other hand it is all more controled. You knew when you were going to get hit again, and you knew what would happen. Probably. It was all more under control. And I guess you knew that if the worst came to the worst they could simply stop the chemo at any time and you'd start to recover from it. With my son's situation it was more unpredicatable. Are pains the natural pain of healing or the start of some new infection or problem? Who knows if it's the start of a big set back, or just some simple little hiccup along the way. I think that's probably harder. 

    I know that there may be long term, or even permanent problems arising from this chemo. I know that although it was the last chemo it hasn't all hit me yet, and I may even start developing new side effects during this final cycle. My husband is ready for me to be fine right now. But that's not going to happen. And I'm not going to push my body. I'm going to keep on being kind to me. That's my new rule. Be as nice to me as I am to anybody else that I love. Take care of me. That's the best thing that I can do for my loved ones too. 

    Yesterday it was sad to see my son leave, but also it was okay. He has his life with his family back in Baltimore. He needs to be there with them. I didn't mourn. But yes, I did stop my routines and lists and I did make a little rock garden in the bottom of the big blue bowl. It's all the old supplies from the fish tank. Sand and gravel, the big amethyst rock, shells, fossils, stones, quartz, natural crystals. It looks good. For sure it looks better. And I could pour on some water and put a couple of gold fish in there right now. Just as it is. That would add a whole layer of life, but also work, to the project. That would mean cleaning, and feeding, filtering. Right now it can just sit there as this 'still life'. And that's fine by me for the moment. I could also put in some of those small, rootless, air type plants. They would fit the look of this landscape. And that was how I took myself through time of my son leaving. I worked on that. I found all the stuff and cleaned it off and rinsed the dusty rocks and gravel. Cleaned the dusty shells. And I killed two birds with one stone. I made my blue bowl look nicer and more finished. And I cleaned out some of the area around the plants by the old fish tank. 

    And then it was a bit of a what now? What next? Kind've day. My husband wanted me to go downstairs for a directors meeting with directors for the new series. But I bailed on that. They don't need me for anything. I still don't feel ready to get into all that yet. 

    I went for my walk, and it was a bit longer. I had borsht and some cheese leftover from my hospital picnic kit for lunch. And a nice deep nap on the bed. 

    My husband made fish and chips for supper. Pickerel. Homemade chips. Asperagus. And we watched the last show of the Hobbit. It wasn't that great. But we watched it anyway. And it was a long one, so that took me right up until my 10 pm bedtime. I did end up taking one antihistamine before bed. But that was it for yesterday. I think it should be okay, but there may still be that second bounceback next week, perhaps as the wave of chemo from last week hits. It'll be a few weeks before these chemicals go out of my system, or at least down to a dull roar. 

    I'm planning a bit of a transistion for myself. Next week is still two doctor appointment days. My family on Tuesday to get my blood pressure checked and a note sent from him to the pre-op doctor. And then Wednesday is Dr. P the oncologist. End of chemo appointment. I don't know if it will be the start of the pills yet. And so yes, while this is the big hump and I am over that, it's also not really the end. There is still the surgery, and the radiation, and also that hormone therapy pill that I'll be taking for the next ten years. And the possibility of a secondary cancer too. Or a recurrance. But still. Enjoy this moment. A lot of things could've gone badly and they didn't. And the chemo worked on this cancer. And that's a big one. That is the big one. 

    I am still giving myself this whole month off of work stuff, except for fiddly bits. 

    So that is next week, Monday is laundry. Tuesday is my family doctor and making sure that letter gets sent to the pre op doc. Wednesday is Dr. P the oncologists, finding out if I have to start taking that pill right away, getting the scope on the next part of treatment. Yes, I should have that sheet of reactions ready to show him, it may affect which of the different pills he gives me if he thinks I'm allergic to the taxol. I have a pretty full schedule once you've added in the daily walk, nap, bath with all the lotion stuff right up until the day after I would've have chemo. It won't be a bad Thursday, or a bad Friday, necessarily. But like I said with this chemo the lowest point still comes 10 days to 14 days after you get it. Next Friday will be 10 days after my last chemo, so it might still be a down day for me. We'll just have to see. Don't expect too much of myself in these two weeks. Just play it by ear. I thought it would be good to have these little daily cleaning go forward projects. My office for one. I am gradually working my way forward with that. Keep on it. Pick one thing, one part of the office every day and give that an hour or so. 

    And so today. First on the list is office work. My office work. I haven't actually done that in a while. But now that I have money in the bank, and know how much I'll have for this month anyways, I can go ahead and pay bills, and I do need to get that medical paper work organized etc and ready for next week. There are a couple of critical things that I need to make happen next week. I can't just be a passive person. So that's the first part of my plan for today. And if that's all I can manage, that and watering the plants, that won't be the end of the world. I'll just keep going foward from there. 

    Tomorrow is my Sunday day off. Or my me-project day. These next two weeks should probably also be my social catch up time. Answer emails. Make a few phone calls as I'm feeling better. 

    Dispatched: March 30

  • 29 Mar 2019 7:02 AM | Contact Me (Administrator)

    If this is not a final happiness, well so what. Take happiness where and when you can get it. Let's all be happy for a while. 

    Friday morning. 6:30 am. Had a really big long sleep yesterday. I slept on the couch from 8 to 10 and then in bed from 10 until 6. Guess the steroids wore off. It was also the end of the full antihistamine day. This morning I feel a bit weak, but not ill and allergic and the red color is down now. 

    My son and I went out for a bit of an excursion yesterday. We shopping and got gifts for him to take home to his family. I have not been out walking that far for a long time. It's been too cold for so long, I could only do the around the block walks. But it was warm yesterday and my son was with me. So it was good. And it was a good distraction, dragging me out and about and out of the sick mental head space too. And it was also good that my son is out of his own sick mental head space so he gets it and knows how to do it too. He knows what it is. It was perfect that he was here this week, he really helped make it feel like it really was the last chemo and turn it around for me. And this is the hard one, so he really helped me get over the hump on that one too. I love my son. 

    And he made vareniki, and borsht too! Comfort food from my childhood and his. I was fading by then so he had to do most of it on his own, but I did help a bit, but then after supper I pretty much conked out on the couch. I guess his wife called but I slept right through it, even being on the couch right in the middle of the action. 

    Got a nice bunch of flowers from the board at my office job, and a nice card from them. And I got some nice emails from my old boss and other board members individually on top of the official card & email. 

    And I had a good quick skype chat with my old friend L and told him the good news of last chemo and the good result, and he told me that his cancer doctor dumped him because they did 5 pathologies with no sign of cancer, so they think there is 0% that whatever is bugging him is cancer. Good news there. All around. But L is still getting over some of the side effects of those useless cancer treatments that were of no value whatsoever. 

    I guess one of the things I should think about for future recurrances and just learned from this experience is this business of the diagnosis. You need to know what it is before you start treatment. Especially cancer treatment because the treatment itself is so harsh and causes so much damage to the rest of your body. It's not something to be undertaken lightly. I understand the pressure to start treatment quickly, because early intervention is a significant factor in the success rate. But it's still not worth it to start treatment before you know what it is. When L's first doctor who was not a cancer specialists said it was bladder cancer and proscribed the standard bladder cancer treatment based on a few abnormal cells found floating free, that's when L could've said, okay, but I want to get sent to the cancer specialist now. I want that second opinion from that person before we start. That guy would've done the further testing before they even started and that whole series of misguided treatment plans could've stopped right there. 

    I've learned that whenever your family doctor tells you that you have an extremely rare form of cancer, that's also a sign to get a second opinion. Extremely rare cancers are just that, extremely rare. Time to get a second opinion on that. 

    My cousin had her second chemo yesterday. I will need to send her flowers and a card. Hopefully to arrive during the down days, next week, to cheer her up. I know how much I appreciate these flowers and cards that have come in. It does make you feel loved and supported. Even a small smile for the day is good. 

    I am feeling pretty good now with all this support from a distance. And with my son here for the last chemo. This has worked out. And I think my husband appreciates my son taking care of me, distracting me, and cooking and doing stuff around the house. He feels less alone in this. And also my son keeps him company when I'm sleeping. It's been lonely for my husband because I sleep so much. My husband has had many evening alone with me sleeping on the couch. This time he had my son with him. So it's been good for my husband that my family is here. And it will be good that my sister is here for surgery and my brother will be here for some of the radiation too. Both my brother and my husband had radiation for their cancers so this will be in their realm of understanding. 

    And in the meantime, I get a break! I get a whole month with no treatment. This is recovery time for me. Yippee! I can start to live again. I'm still keeping it as a not going back to work time for me. Let's have a real break. 

    I am coming back into me and knowing who I am again. It was my last chemo, but I'm still full of drugs, I'm not recovered yet, I'm actually being hit the most, worst, most accumulated version right now. But I feel me again, and more confidently me. Why? It's this big influx of people who knew me before cancer. It's having my son here, family. And all these touch base, close moments with friends now too. We are all partly made by the people around us. It's part of the infrastructure of our lives. And that is helping me now. My son just expects me to have a project like the bottle garden even if I'm in chemo. I have projects, that's what I do. He wasn't surprised when I told him about the family cookbook idea I'm working on too. The non-profit gang expects me to be strong and creative and optimistic. And calm. That's what I am to them. And they've re-enforced that in me with their cards and emails. J expects me to be optimistic and funny, D too. 

    It's not the same, as I write this I see that it's not the same me for everybody, different sides of me come through and are re-enforced by different people. But I realize now how important it is to choose who you spend your time with. They affect who you are. And sometimes it just clicks and sometimes it doesn't. 

    And so, now this phase is done, I go forward from here, gathering up the pieces of who I am, this combination of me at a deep physical cellular level and me at this distant, outside my body social, environmental level. It's the combination of the two that creates who we are. I'm on just as much drugs right now, but I feel more secure in me, who I am, which me is me. It's a flexible moving changing thing, personality and identity. Feeling that infrastructure of my family being around both virtually and physically is what has helped me feel less lost and confused. And I guess it's also the joy, genuine joy that I feel coming from them, that this chemo has worked. We have a reprieve if not a cure, and their sense of empathy can share in this moment of happiness instead of the worry and suffering. And that re-enforces my moment of happiness too. And I will take it. It will help me recover and move forward, and if the cells give me trouble again, and if this is not a final happiness, well so what. Take happiness where and when you can get it. Let's all be happy for a while. 

    Let's all be happy for this recovery month. Let's all be happy that it's a small and probably not too traumatic surgery. And I will have family around then too. And let's all be happy for that month after was we wait for lab results. Expecting the best, but willing to adapt to bad news and perhaps the necessity of making new, tough decisons about further treatments. 

    Get myself organized in this time so that if the results are not so great then I can hunker down with the disability stuff that I have in place already. And if the news is good I can start dismantling disability and rebuilding my new life that will have a space and plan in it for a possible recurrance, and also work for me as moving forward. Following my own dreams. As I have always done, that combination of selfish and following your own dreams, and social, bringing people along with you and into the dream. It's a balance. It's all balances and tipping points. 

    Alone here with my husband all winter, being on drugs, going through all this physical trauma, it did throw me for a loop. But not past the tipping point. I have been passed the tipping point in my life before though. What brought me back then was nature, time in the country, my old friends, my family - keeping them in my life, and starting to make new friends building good relationships with them. All of that. 

    It is much the same this time too. But also bringing in more of my own physical relationship with my body. Because this has been a physical trauma not a social or emotional one. Yes I am glad for all those yoga years. Yes I am glad that I learned to listen to my body, and that I learned to control my mind better, be relaxed, be focused, be in the moment. Learned to manage my mental state more than I would have without all those years of daily practice. Taught myself to fall asleep whenever I want. Learned how to get up and move even if you don't feel like it. Learned live with certain kinds of pain that take you forward. The pain of childbirth, life comes with pain. Pain is not all bad, it's part of being alive. Nature of the beast. 

    Dispatched: March 29

  • 28 Mar 2019 6:06 AM | Contact Me (Administrator)

    I guess it's a turning point in the story for sure. I was sitting in the chemo chair with my son beside me, knowing that the chemo worked. I know that all the reasons I was put on this treatment plan are gone now. If I walked into a new cancer clinic, they would not find cancer, they would not start treating me based on what's here now. Not even stage one. Not dectable. 

    It's 1:45 am. Wide awake from the steroids, so I'm up, in my chair, feeling pretty good, drinking hot chocolate and taking a moment for a bit of writing. It worked out pretty good when I did it last week, and this is my last day like this. It was my last chemo. 

    I am really glad that my son is here. I'm glad that he's feeling alive again himself. It took a long time, but he's more solidly there now, I think it was good for him to do these two hospital visits, to go back to the scene of his big trauma, a hospital if not "the" hospital, get the flashbacks, make the comparisons and be in the position of caregiver instead of patient. Both to get a perspective on cancer and to re-live his trauma experience from a safely recovered, clear headed perspective. It was still a trauma, because he told himself he calmed himself saying, it's not me, this isn't all happening to me, but then he looks over and sees that it is me, his mom that's going through this. That's a jolt too. I think this insight into the caregiver position is good for him too, will be good for his relationship with his wife and family too. 

    It's been good for us to have that young healthy energy in the house. And for me to see how far the human body goes to repair itself even if it does take a long time. That too. 

     So it's been good. We have all day tomorrow. I'm thinking of getting him to make vareniki for supper tonight. Maybe he can buy the nesspresso milk frother on Parc Avenue, and actually that could maybe be our little walk today.

    Yesterday was the last chemo day. My husband dropped my son and I off at the hospital and he went shopping, then picked us up at the end. We did stop and get the take out fried chicken dinner. We ate cookies, chips and assorted kinds of junk food all night. Treat night. But first we watched Moonrise Kingdom on TV starting at around 4:30 in the afternoon, so it was a bit of a play hooky day right there. My son and I started the movie but my husband joined in. Then we did the news and Daily Planet. Then I fell asleep on the couch for a while. From 9 to my bedtime we had an episode of Vikings. And I forgot that I had cancer, and that it was chemo day. I felt pretty good. But I did really have to go to bed at 10. My husband and son stayed up, don't know what they watched, but they were companionable and I heard my son chuckling a few times, so that was good too. 

    And in the chemo room. I did have lot's of moments of - this is the last time. I won't do this again, and I'm going away happy. It's been a success story. Yes I will get something for the nurses and I will write up a card telling them how it's worked out, and how I appreciate what it must be like for them to do these treatments that hurt people when you are a person of compassion and empathy. That will be in time for next Wednesday, so next week will still be a bit of medical stuff for me, not the real holiday yet. A couple of medical projects. The picture of my allergic reaction. Make a page of that. The card and letter for the nurses. Pick up some chocolates or flowers for them too. But mainly, be a writer for them. Do my writing thing for them. That at least. 

    Many little happy moments, and my son caught them, and smiled too. Yes, I felt more me when he was around. We do have this easy affectionate relationship. We were lucky to have that crazy entertaining rich family in the next chemo chair, it sent us back to those days when we lived in Calgary and used to go out to restaurants for dinner, we'd guess the stories of the people around us at other tables. It was us being us, evesdropping on other people's lives and having a good time together doing it. A treasured memory. 

    Well it's 2:30am and I'm starting to get sleepy again, not feeling like my brain is really up and running the way it felt the other night.  

    We talked about all these things that I have thinking about lately. Drugs and how they affect who you are, what you is you? The hormone fed teenager? The pain riddled older or diseased person? The drunk, or the hangover? You are not the same person all your life, which you is real? And does it matter? He talked about these same things, he's been thinking about these same things even though his medical trauma was different, physically different, it still brought up these same questions. 

    My son is here today and leaving tomorrow. 

    Last day of chemo. I guess it's a turning point in the story for sure. Because we were sitting two chairs down from my first day chemo it was a bookend story for me, looking at the bald, bland woman in the same chair where that old guy came to life on the first day. And sitting there with my son, knowing that the chemo worked. There is that on this last day for me that is not probably true for other people. M's husband didn't know until they ran all the tests. His last day was the beginning of a month of diagonstic tests and waiting for results. I know that all the reasons I was put on this treatment plan are gone now. If I walked in cold to a new cancer clinic, they would not find cancer, they would not start treating me based on what's here. Not even stage one. Not detectable. 

    I did talk to my son a lot about my plans for the future and as we talked we came to the same revelation, I might be retired already. If there are complications, if I can use my disability insurance that's mostly set up now, once that is done. I could relax, live on in this disability world that I've created for myself all the way to retirement, and be fully retired after that. 

    I might be retired now. If there are complications, or if my non-profit croaks while I'm away, then I just might be retired now, already. 

    Here is the other thing. I don't know how long of a retirement I might have. Mom ended up with none. She did this same thing, was on cancer treatments and finally just never got better enough to go back to work. She was less than 65 when she died. Same with my dad. He never got to retire either. So there is more of a thing in my mind for me to 'live now' rather than plan so much for retirement. I need to find a way for me to be able to live in sickness or health in these next few dynamic years where things could change for the better or worse quite dramatically. And I need to be able to live in a way that is not unlike my brother, being well and having to work and have an income, and then being ill and not being able to work. Alternating between those two for a while. Keep thinking about it, and also some of these - we just have to wait and see, see how things develop. 

    See if there is work at the non-profit, and money to pay me. See if there is work at film production company and money to pay me. I might be retired already and just not know it yet.

    Dispatched: March 28

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