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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

  • 16 Apr 2019 5:43 AM | Contact Me (Administrator)

    I was told to point at that same cancer support room table where I had such a miserable time last week - and laugh. I pointed at the table and I laughed at me for taking it so seriously. Wow did that work. Wow did I feel better! I also laughed at me for taking on the pain of all those 15 women with breast cancer, I laughed at myself for that too while we were doing our fake it till you make it laugh exercises. It almost turned into one of those laugh until you cry moments. Tears started rolling down my face I was laughing so hard. 

    Tuesday morning. It is warm out. So warm that my plants stayed out all night on the balcony and I'm sure they are fine. It was a no coat day yesterday. All of a sudden. On Saturday it was still winter, the dregs of winter, but still winter. On Sunday it turned toward summer. Bam. In one day, forget about spring, it was summer. And now it has actually warmed up from the sun, a few more days like this and it will truly be summer because if even if we get the odd chilly day, and even bit of snow, the ground itself is starting to warm, the plants will grow. 

    I was in a much better mental state yesterday. I was looking forward to this week off from everything, no schedules to keep. Just the laughter workshop. That turned out to be pretty funny. I was pumped. I even went to the drugstore looking for adult diapers. I found some sanitary napkin type products, made to absorb pee, and the pee smell as well, and I bought them instead of the full on diaper. I was hoping to pee my pants laughing, or at least leak a little bit. It felt strange to wear a sanitary napkin again after all these years. But you get used to it and forget about it too. My husband drove me there. It was a beautiful summer day and everybody was in a good mood. A bit less so in the Wellness Centre. Some ill looking people waiting around in the lobby this time. People in wheelchairs. And the ancient not-with-the-program old lady who did my intake interview was at the reception desk. It was hard to get her attention. But now I can make myself at home. I can get myself a cup of cold, strong coffee from the thermos. I can sit in a comfy chair and play on my phone, I can go back occassionaly and try to get her attention. And finally I did. I was the only one who signed up for the laughter workshop. I could see that from the sign in sheet. And the instructor was late. I thought we'd cancel. But she said she was glad that somebody showed up and that she didn't have to sit there by herself for a long time just in case and so we began. 

    She started off by telling me how depressed she was, that bad things were going on in her life and that she didn't really want to do this, come in today. She was finding it hard to get motivated. And I was thinking what a great opportunity to write some funny story about going to the laughter workshop and getting dragged down by the depressed instructor. She did get into talk about the value of laughter, how it was the first language, it reduces stress, it promotes social bonding, etc, etc. Stuff that I knew already. I think she was a bit intimidated when I told her I knew the guy who made the documentary about laughter. That's one of the reasons I got into the idea of laughter. She told me she does stand up comedy. That she was a preschool teacher for 20 years. The workshop was in the very room where we did the disasterous support group session. So it was good for me mentally to be there, to be back at the 'scene of the crime' as it were. And it was good for me to be the only participant. To have the room to myself, not be crowded out. To be really unigue and individual. She warned me not to expect too much because part of what makes the laughter workshops work is that they are contagious. And that effect is harder to create with only two people. 

    And then we began doing laughter exercises. That's what we did. Fake it til you make it. And it was fun. And it wasn't all that fake because I am a laugher anyway. And I had some great moments while I was going through all these exercises faking all these different kinds of laughs. She complimented my smile and I remembered Colleen in Yorkton the day I went in to make an earnest report about my progress on the project she’d hired me to do for her and she told me that she didn't care what I did, that she would hire me just to stand in the hallways and laugh with people. She said I had this great laugh that had transpformed a workplace that had become petty and insular and full of fighting over parking spots and other minor irritants and nothing she had tried to break that had worked until I showed up and started laughing all the time. I had a great infectous laugh. People joined in, they quit fighting with each other so much, they all started doing their work instead of worrying about those parking spaces and the productivity of the whole building went up so much that it didn't acutally matter what I did on my little project. It was worth it to pay me just to hang around and laugh in the hallways. I remembered that. 

    That was me. And that I was me in a difficult time. I was off in a strange prairie city far from home working in Yorton because it was a good project and I needed the money. Living in that cheap hotel, or then living in all alone in a house in a neighourhood that had a panty theif. That was me then, laughing. And enjoying myself after all. It worked out. That show I was working on eventually got a bunch of awards too. It all came back to me when I was laughing and the instructor told me I had a nice smile. I have a nice laugh. And if I were one of those fairy godmother’s who bestoys wishes for a new baby that's what I would wish for them. A nice, infectious laugh, people will like you and want to be around you. I should laugh more freely, laugh out loud more freely. I have a good laugh. 

    And then we had this moment where she told me to point at the table and laugh at it. We'd both point at the table and laugh at it. That was great for me. It was in fact the very table and even the very spot where the two volunteers who were such poor group leaders, the ones who gave me gas about being late and who dismissed people with a ‘so you're well on your way, let's move on, next’ after they told their stories, me too she dismissed me too that way. I appreciate now, as I write this that all that contributed to what a miserable evening I had. I got told to point at that very table that very spot at the very table and laugh. Pointing and laughing is not approved in our society. It was a good therapy to do that. And how perfect to do that at the very spot where I actually had something to point at and laugh about. I pointed at the table and I laughed at me for taking it so seriously. Wow did that work. Wow did I feel better! I also laughed at me for taking on the pain of all those 15 women with breast cancer, I laughed at myself for that too while we were at it. It almost turned into one of those laugh until you cry moments. And might have it I'd had the anyonmity of being in a bigger group. But as it was I could see that the instructor kept up a pretty good wall between us. She did not want to get hit with all my shit. And I get it. After seeing how needy and angry some of these breast cancer women are, I get it. And after seeing how the laughter workshop unleashes these feelings, does create that sense of social bonding, and maybe false intimacy I get how that probably happens to her a lot in these workshops and she doesn't want it. I get it all. And as the laughing went on and she relaxed about me being either too uptight to laugh, or so loose that I would lose it on account of all the laughing I noticed that the whole tone of the workshop improved. We were going to get through this okay. I myself I was having a good time. 

    I discovered that laughter, even a fake laughter releases endorphines just like good exercise, just like a good run on my stationary bike, or a good run around the park or a good swim or a good walk up the mountain. I haven't had that for a long time. Not since I first started treatment back in October and I was too nauseaous to bend over and even do yoga, when all I could manage was a super slow walk, around the block if it was a good day, to the nearest tree and back if it wasn't. Laughter makes you feel better, it gives you endorphines just like real exercise, but you don't really have to be in good shape to do it. I felt the endorphines. I remembered that feeling and I felt great. My old buddies. This me. This is me on endorphines. It's a me that I know and like. 

    And then I started to suspect that the whole downer thing on her part was an act. It was part of the performance. She took this business of me being the only participant as an opportunity to rehearse her performance. You start off down. She asked me to pick a number from one to ten that described my mood going in. And then at the end she asked me to do that again. Her spirit rose during the workshop. But I think now that was fake. I think that change was part of the performance. So I will not write a funny story about taking this laughter workshop from a depressed lady. It was still a good workshop, even if I did see through it. And even if we were both faking laughter a lot, and then drifting into real laughter. You still feel better. It still makes endorphines. This is another part of the interesting story about how much of our personalities is based on chemicals. And what is real. If fake laughter creates real endorphines how is that different than being injected by fight/flight hormones? Which you is real? Who are you without your chemicals? 

    Endorphines are nice chemicals to live with. This was a nice version of me and more familar. I am more likely to be happy with endorphines than stressed out with steroids. I feel more like me. And yes, it did completely wash away the distress from the support group. It was absolutely perfect for that. And just getting up and moving around like that, and not hurting, I haven't done anything like that for a long time either. My body was too wretched. I had to hold it gently and carefully. I might have laughed since treatment began. But I didn't stand up and slap my knees laughing. I didn't laugh for almost an hour straight. I didn't laugh until I could hardly breath. That was all good. That felt fantastic! 

    And there were some general life things mixed in with the actual laughing. She told me to find my style of humour and give myself a laugh every day. It’s easy these days, just go look it up on youtube and have a laugh every day. I didn't have to think too much on that one. I do it already. Mine is dog and cat slapstick. Animals getting themselves into goofy situations, doing unexpected things. I love that. And babies laughing. Babies losing it laughing is another one. I will always laugh at those, and I'm not alone. The internet is full of them. 

    There were other ones too. Have a day for forgivenss, another day for compliments where you do these things that turn your focus to the positive. But I didn't pay as much attention to that. There should've been handouts. 

    And I think back on the group support with a different attitude now. It can go from a downer beginning, like that laughter workshop and improve as we go. I get that now. I'll get to know these women as people beyond their cancers as we go along, even if we do it guerilla style in spite of the volunteer leaders. It will be okay. Now I am even looking forward to seeing them all again and doing the dietician thing in a couple of weeks. I'll go early so I have a chance to chat a bit without structure more one on one the way I like it. That laughter cleared the air in my own mind. Feels good. 

    And then after that I took the wig back to the place where I got it from back at the begining of chemo before my hair even fell out. I wanted to try life with short red hair. I took it as a chance to bust out, try something new. It was okay. That wig was uncomfortable though. I admit that. It was never comfortable to wear. And with the weather being so nice yesterday I did feel weird still wearing the little grey cashmere toque, even if it was little. It is time to switch to a wig. And I'm out of chemo now, even if my hair hasn't grown back yet, it is also a good way to mark that transition too. 

    I got a volunteer who wasn't quite so old and out of it, and she did help me more. She told me to keep the wig cap that they give you to wear to try on wigs. And after she got over wanting me to keep the old wig because she was sure the color would suit my complexion (it did, I look good in red hair) and perhaps my husband would get used to it? She pointed out that it was a good quality wig. Better than most on their loaner rack. But you know, in the end two things changed it all for me with that red haired wig. One was that I couldn't really wear it around people that I work with because it's too different, too fake. Too not me for a professional venue. So I was already thinking of a wig more like my own grey hair anyways. And then it was the look on my poor husband’s face. He really did not recognize me in that wig. It was really hard for him. And with me having this internal identity crisis. Who am I? Who was I before all these chemicals hit my system, and who is left now? I didn't need him looking at me like a stranger on top of all this. I appreciated the way he stuck with me through all the bald stuff, and the fuzzy regrowth. He still saw me in all that, and saw me with affection and love too. It was just that red haired wig that put him off. I did not feel like it was worth it to try and make him adjust the way the volunteer suggested/hinted I should do. But she was right didn’t have a lot of choice. The grey wigs are too dark for me. They are the kind of grey that you go if you start off with black hair and go grey. Not me at all. I ended up with an ash blonde wig. This is the color that I had when I first met my husband. Going back in time. And it was cut in a long, shag type cut. Out of date. An old fashioned style too. And less hair, the scalp shows through more. And the bangs were too long and poked me in the eye. So. It was not a perfect exchange. New wigs weren't coming in for six weeks to two months. Too long. So I went with the ash blonde. I wore it while I waited for my husband to pick me up. He was relieved and happy to see me looking like me. So that was good. Problem solved. 

    It was a good day yesterday. I solved two big psycological problems in that one day. My husband wore shorts and pedeled up to the market. I looked like me again and that made him happy. I laughed at myself and the group support disaster. Life is significantly better all ways around now. It was actually a super good day yesterday. 

    I took a picture of some cute running shoes in the window of the shoe store that my sister likes that's just around the corner from our place. And I sent pictures of the new wig and asked if she would help me trim the bangs when she gets here. All good. Giving a more postitive spin and focus to the trip.

    Gratitude, that was the other thing to do every day. And I realise that is what I'm doing when I write those thank you cards, and thank you letters. Gratitude. Expressing gratitude directly to the people who've been so good to me, supportive. It's good for me to do it too, it's not just a social duty. It's good therapy for me. I don't have to sit down and do them all at once like writing Christmas cards. I can do them one at a time, and spread that nice gratitude feeling out, and give each one more personal individual attention and appreciation. 

    So the laughter workshop also re-enforced the good things that I've been doing, as well as I've been able, all along. 

    And yes actually it did feel good to wear that wig all evening, be someone else sitting there in the room, to see myself in the mirror looking not quite so hurt and destroyed. The wig hides my eyebrows or lack there of. And My skin looks better, the allergic rash less noticable when I'm wearing the wig and my glasses. I look - not like me. And not like the me I want to become, am becoming, but like a person, more like a unique individual than a chemo person. Nobody would notice me on the street anymore. I am not even a grey haired person anymore. With this wig I've settled back into an older version of me, a passe, out of style middle aged version of me. I miss my silky, straight silvery blonde hair. Perhaps I can never ask a wig to be that. I'll just have to wait to grow into myself again. But in the meantime, while I wait I can at least let go of chemo woman and turn into just a middle aged woman. Blah hair color, out of date hair style. But nobody to feel sorry for. And now when my husband looks at me, he sees the woman he fell in love with. And it makes him smile to himself. I see that, and I smile too. It's okay. 

    Dispatched: April 16


  • 15 Apr 2019 7:32 AM | Contact Me (Administrator)

    Go ahead, they have products  for that.

    I am going to go out and buy myself some adult diapers. In case I laugh so hard I piss myself. I am hoping to laugh so hard I piss myself. Comfortable clothes and a diaper. Who would’ve thought? But I'm not an incontient old lady, I prefer to picture it more like that crazy astronaunt driving across the country to stalk her ex-lover. No time to stop for pee breaks. That's the ticket. I want to feel free to laugh until I piss myself, out in public, in front of strangers and not worry about it. And if I don't piss myself, well I'll be disappointed, but it's not such a great loss as all that. I'm sure I will at least smile and feel good. Better. 

    Yesterday was the sudden leap forward into early summer that was forecast. Warm, early summer warm and sunny. When I went for my walk the streets and park were full of people. They were playing drums at the statue in the park, summer. It sounded like summer and it felt like summer. A few people wore toques and light parkas, and a few people wore shorts. I walked a bit further before I turned at the top of the tennis courts and started the return journey. I just forgot that part of the walk, as I started to write this I realized that I forgot that part, and wasn't sure really where I had walked, but I gave it a moment and then it came back to me. Little moments from that part of the walk. The view down the street. A man with a black lab that was walking towards me. The pool of water by Moose's old favourite water fountain, Moose's old favourite drinking spot. It did come back to me. That part of the walk. Just now. Just giving it a moment. 

    So there are still these swiss cheese gaps in my memory. But I am also able to bring these things back, these memories are retreivable. Not important except as a gap, and retrievable. I think the thing to do is to keep on building the frame works, this is what I did, this is where I was, find the gaps and fill them in. I think that helps make it easier. These memories came back fairly quickly just sitting here with the framework in place in my mind. Remember walking up the street, the kid listening to music that I passed, and then the cross path started to come back into my memory too. This was easier than back when I was in full chemo mode and forgot the movies that I'd watched the day before. I couldn't bring those back at all. I had to go look at the dvd cover to jog my memory, but I was able to do it. I did bring them back. It seems that there still are these kinds of swiss cheese gaps in my memory, but it's getting easier to retrieve them. Practice. Just keep catching them and practicing retreiveing them, even if they are not important memories in and of themselves. 

    That's all I can think to do. Exercise, keep gradually increasing the exercise. Getting out and about talking to people, doing more online social exchanges too, meet new people. I just realised that is probably actually the best thing that the cancer support program offers me right now, simply the opportunity to meet new people and go through all those social interactions, be challenged in that way. And lot's of it. 

    Last week it was the support group that was a personal disaster for me. Early on it was the Look Good Feel Good workshop and that was a big success and a lot of fun for me even though I'm not a cosmetics and make up person generally. Today it's going to be the laughter workshop. I'm a comic writer, I try to add comedy to my work whereever possible. I have friends who have their Phds in subjects like humour and hope. I have a real interest in humour and how it works. I have been curious about these laughter workshops since I first learned about them in a documentary that a friend made many years ago. This is one of the main reasons I registered myself with the whole cancer support program, the laughter workshop. And then the personal trainer. That too. So, I'm kind of excited that today I'll really get to go, I'm well enough and I'm looking forward to it. I might be disappointed with the actual workshop, but I will be happy to satisfy my curiousity. And I just realized that this is what I should be writing to my friend D about when I do my letter to her. This is her thesis topic, hope and drama, teaching drama to teenagers and the role hope plays in it. 

    I am even going to go out and buy myself some adult diapers. In case I laugh so hard I piss myself. I am hoping to laugh so hard I piss myself. That would be great. If I'm wearing protection. Comfortable clothes and a diaper. Who would’ve thought? But I'm not an incontient old lady, I prefer to picture it more as a crazy astronaunt driving across the country to stalk and ex-lover. That's the ticket. I want to feel free to laugh until I piss myself, out in public, in front of strangers and not worry about it. And if I don't piss myself, well I'll be disappointed, but it's not such a great loss as all that. I'm sure I will at least smile and feel good. Better. 

    I had a good phone visit with my son yesterday. I called him and we had a nice chat about life. I learned that I have to be open with him, tell him lot's about what I'm doing, freely, and then he comes around more and tells me more about what's up in his world. I give more of me instead of grilling him, that seems to work better. It was a good phone visit. They are back from their short holiday, they had to drive through the night to get home because every motel and hotel was full on account of spring break and families all heading home from Florida along their route. My son was two hours late getting home from his visit to me because there was a big traffic accident and they shut down part of the highway completely. They do have access to the Blue Tang part of Facebook and they were checking it too. They also saw all the stuff about the Little Cayman trip, and paid attention because that would've been their alternate holiday if I wasn't going through this cancer stuff. It was nice to know that they're interested. My stalker children. A diapered mother and stalker children - what a family, eh? I love it. 

    Because summer hit us so suddenly I was a bit stuck for something to wear on my bald head when I went out for my walk. All of a sudden all my nice wool toques and caps don't work anymore. And won't work now until after my hair grows back. I put on the wig. Decided it was time to start wearing the wig. I'm feeling stronger, I'm out of chemo. It's summer weather. I thought it was a good time to switch to the wig and lose the 'chemo look' a bit more. My poor husband. He is just not able to cope with that wig. Me in short red hair. It's not the short hair, it's the red hair that bugs him. Interesting. I was cleaning the mop in the bathtub and he startled me when he came in from his excursion to the market. He was startled too when he saw me in the wig. It's not me. When he sees me in the wig, it's just not me. He can't cope with it. “Who is this strange woman in my bathroom?” He did it again when I came up the stairs after my walk, he started when he saw me and gave me the “Who is this strange woman coming into my house?”. And he doesn't like the strange red haired woman. He looks at me with suspicion and distrust. Interesting. I actually look better in red hair, it complements my skin tone quite nicely. But it's clearly a no go with my husband. And he's been through enough this winter with all my cancer stuff, I don't need to bug him with the wig. 

    I also am amazed that he's been so great about the bald part. He was fascinated with the whole hair loss process. He got into it and took pictures as it happened. And he thought I was cute with my bald head, that I looked like a little gnome sitting in his house. He would come up from behind and rub my head with affection and tell me how I looked like a little gnome. And then he thought the few white hairs doing their halo thing was cute. And the white fuzzy stuff was another flavour of cute too. He's into this whole bald thing. Surprising.  

    But the red wig, that's just not doing it for him. Whatever that evokes is not good. So. Not worth trying to deal with that one. I am taking the wig back today and asking to exchange it for a different wig, a different colour. I mentioned another grey one to my husband and he said blonde. I think he would like a wig that looks like the old me. Yikes. I really don't want to go there. Not even for a while. I'm as horrified at the idea of trying to turn back that clock as he is about the short red hair. So. We will have to find a compromise. I don't think it's in the wig lending library at the Wellness Centre. But I did find one online, a short haired wig, with a cut similar to the one the Francoise gave me at the start of chemo, in a color called Sandy Silver. A blondish grey. That would work for both of us. It's $160 US. I could order it whenever my disability check comes in. I don't know about ordering something like a wig online. Thinking about it. In the meantime I won't wear the red wig anymore, anyways. And I will try to exchange it today. Try out a new loaner wig for much cheaper, and I can look at it and try it on, less choice but I'll only have to pay the exchange fee. We'll check it out and see how it goes today. 

    Yesterday I also got my husband to take down the window box that's filled with the big geranium plant and I put it out on the balcony for the day. And I gave it a good dose of fertilizer too. It should start to really come to life now that we have this warm weather and good sunshine for it, and if it's also got water and food - wahoo. I'm going to leave it like this, let it get established and then divide the plants amoungst the window boxes when I do the real planting either later this month before my sister comes, or with my sister, or after she leaves depending on how it goes. I also took out the big herb pot with the garlic chives. So suddenly I have better access to the window bottle garden, the big blue bowl below, and just more light and space in this corner. It's quite nice like this. I don't think I'll bring in the window box plants next year. They don't get much light at the top there now, and I do like having more space and light in this corner. 

    I feel like I have so much I want to do now. And still so little time. I guess this is the feeling of returning to normal, it's the feeling of having energy and the feeling of life in you. Getting over the chemo effects, gradually. My nose has quit bleeding for sure. That is a big one for me. Three weeks. It will be three weeks on Wednesday, so that did happen pretty quickly. My rash is also clearing up quite quickly now. I'm using the dormer 211 lotion pretty freely and spending more time in the bathtub doing exfoliating on the dead skin and we are working our way through that hard crusty layer to the fresh skin below. It feels much better now, as does my face. I think that arm will be ready by the time we go for surgery. Some of my finger nails are still sore and I can see the band of dark color where the nail bed was badly damaged by the chemo, so I get it. I don't blame my nails for being sore. I am wearing clear nail polish now and it does help both the look of it, and the feel of it too, the protection it gives. I'm wearing the Deborah Littman Turn Back Time gentle breathable polish. The random allergic skin burn pains have stopped. The random shooting nerve pains have stopped. The 'fatigue' is letting up already. I went two days in a row without a nap and still stayed awake until 10pm. I can stay awake longer without feeling bad. I'm getting past being a toddler that needs a nap every day and moving to that age closer to being a little kid where you can go a few days without a nap, but then you need one, and then a few days without a nap. I can see that happening now. M’s husband said that about a month later he was able to quit taking naps. I can see that I am probably on the same schedule. 

    My face still heats up and feels allergic every once in a while, for a few hours, it did that last night, but it was fine when I woke up this morning. My tongue and finger tips are still numb. Still no eyebrows or eyelashes. Still weigh 20 pounds more than I did when I started all this. Still need to keep up with a lot of fluids or I start to get a headache. Still clearing out stuff, methinks that there is still lot's of toxic and dead stuff for my poor system to deal with it. 

    And so today. I'll do my whole bath and lotion routine, a load of laundry this morning and for sure a trip to the drugstore to get some form of diaper to wear to the laughter workshop. That with the bath, whole lotion exfoliating routine, and laundry will be a full morning. And the laughter workshop and wig exchange will take most of the afternoon. Then home again, home again jigity jig. 

    Except for the laughter workshop I don't have any appointments or scheduled time this week. But I do have things to do. For sure my walking, increasing the walking routine. The whole bathing and lotion ritual too. These take time, and will take increased time actually. And I have some stuff to do for my old office job. 

    June 1st. That's when I'm officially cleared of all chemo effects enough to travel out of the country. And then of course there is the radiation coming up too, which also causes fatigue as well. And then of course there are the daily pills coming up too. So for me it will be a never ending story. As it will be for a lot of people. But even though I know it will have to be a bit of an open ended ending, I still want to get to a natural ending point. Not a certain, clean, clear happy ending but still a positive looking outcome for what the chemo did. A hard look at the negative, and a good look at the positive too. 

    Dispatched: April 15

  • 14 Apr 2019 5:41 AM | Contact Me (Administrator)

    It has taken me far longer to recover than I thought it would. It didn't really end on the last day of chemo. That was only the first day of the last cycle. The effects of chemo begin to end with the last nadir or low point. Twenty-one to twenty-eight days later. No wonder I still feel so bad. But we're getting there. 

    Sunday morning. I am starting to settle into a new routine. I nap less, I stay up later, and I sleep past that 3 am wake up moment more often now. I go further on my walks and my muscles are actually starting to be a bit sore from the added exercise. Just a bit. My nose seems to have stopped bleeding completely. My skin is recovering too. I feel much better, though I do still have moments where I will be sitting there, watching tv, cleaning the bathroom sink, minding my own business, doing my own thing and a wave of poisoned feeling will come over me. I'll just feel poisoned for a while, then it goes away. Drinking fluids seems to help. But it's not merely dehydrated. It feels posioned. Not quite a hangover, but something like it, only it comes on unexpectedly and goes away unexpectedly too. For all that I mostly feel better, when I look in the mirror it's not me that I see. It's still chemo face that looks back at me. But at least now it's not painful, swollen, red chemo face. 

    Z the cameraman stopped by yesterday to pick up some gear for a shoot up north; equipment and also big winter clothes. It might be the start of spring here, but it's still the Arctic up there. And he will be standing around in the cold a lot on this shoot, long days for him. Z. He was on the Inukjuak shoot with me and the surfer editor. Z was the young guy seeing it all with the young guys fresh eyes. And he was popular with the young woman. He's a handsome young man. Z and I kind of bonded during that week of the three of us living together in the same house while we worked. I was happy there. Our Inuk producer C and I laughed a lot together. I just enjoyed it. We all went out and looked at the northern lights one night. Z took pictures. Both the surfer editor and I were still young enough to be a bit wonder struck ourselves and drove up to a high point with Z for a good look at the northern lights. 

    Z also had cancer when he was younger. His mom called me early on in my diagonsis to talk about it, she talked about Z's chemo and how she cooked for him, the right kinds of foods to make, how the chemo knocked him back so far, how terrible it was to be a mother and have to help your kid through that, and also that it worked. Twenty years later Z is fine. The cancer never came back. My husband's cancer never came back either. 17 years later. Yesterday was the first time that Z saw me since I started treatment. Well I think I'd had one chemo round when we had our last dim sum with all the film maker gang. I'd already cut my hair short, but it hadn't fallen out yet. Yesterday he gave me a good big hug. He saw I looked bad and he gave me a good big hug. He always does anyway, but this one was even bigger. He understands. His really straight hair grew back curly at first, and then that all fell out and it finally grew back normal. So, I think he was almost sorry to tell me that new fluff of hair would fall out too, and I'd be bald again. But I'm past caring about that. It was good to see Z again, one more step in coming back into my old pre-treatment life and coming out of winter cabin fever too. 

    All the Blue Tang scuba buddies got back from their trip and they've been busily posting more pictures and fun comments about their pictures talking about the good food and the good service at the resort. Yes, now I do feel a bit sad about not going, but not because I wasn't there, but because I was left out of a good social experience. E posted that she finally did go to a doctor yesterday and that she's taking drugs for a bad chest infection. I know exactly what that is. And it's better than what I feared for her. She went diving very soon after her chemo ended. Her port was only removed the same week as I had my last chemo. It didn't have time to heal properly before she started diving. She still has a compromised immmune system too. She told me she has heart damage for sure, and she thought she had lung damage as well. I was afraid that something would happen with her heart or lungs on a dive. Luckily it was not that. Luckily it was just a chest infection, and I bet it was around where the port was, that's how the infection got in. And V did make a nice post about enjoying their dives together, and saying that she was glad that she was taking drugs for it but that she also needed to rest, and have proper nutrition too in order to get better and stay better. So, this is exactly what I feared for my friend E, but not so bad as it could've been.  And so I missed being there. I missed that common experience that these friends shared with each other, and without us. 

    But also. When I saw the picture they took saying J & G this dive's for you it made me feel good. It made me feel good about our relationship and who we are as a couple in the world. We have the scuba buddies. They missed us, and they missed the two of us, as a couple. We have the filmmaking buddies, this little world of filmmakers, we're part of that as a couple too. 

    Yes, I am still trying to get over that doomed feeling of endless cancer and then death that I got from being at that breast cancer support group meeting. F&*k. I haven't felt like this, not once since the diagonsis. I was able to fight my way through everything, with a realistic, but also positive attitude. I survived it all except for that cursed support group session. Tomorrow is the laughter workshop. Today I'm going to go buy myself some adult diapers so that I can laugh so hard I piss myself if I want. So I won't have to worry about pissing myself anyways. I'm not too proud to do that. I would rather have the good belly laugh and not be so proud. I don't want to be afraid of pissing myself. I am ready for a good laugh. I've been trying to be funny and get other people to laugh, and I've succeeded. And it feels really good when I can make people laugh and be happy. That makes me feel better. Hopefully being back there, at the Wellness Centre, but having a good laugh, being in the laughter workshop will help dispell that sense of doom I picked up, like a cold or flu bug the last time I was there. 

    Now I understand more fully what T was talking about. How she was sorry that she jumped into all those support groups for her Ovarian cancer. All the women, from two different support groups have died. She is the only one who is still alive. How depressing is that? What kind of support is that? She's been fighting that downer ever since. She started hanging out with the breast cancer women, joined their dragon boat team because we don't die as much. She needed to be around women who had cancer but didn't die. She had to do that for herself in order to get over the two ovarian cancer support groups that she was in where every other woman died from their cancer. I thought this support group would be okay. But it sucked me down right away, that very first get to know you night, sucked me right down and put a darkness in my mind that I haven't been able to shake since then. 

    And I'm mad. This could have been a really good, positive break in between chemo and surgery when the chemo looks like it's worked, and the surgery will be small. I know perfectly well that it's not that easy. But still I could've really lived in this nice moment of time. And I was there. Mentally I was there to enjoy it. And then the group, just hearing their stories go around the table, just seeing their faces and hearing so many repeat stories, so many I'm here with complications and a recurrance stories from simple stage one cancers, and me there with my stage 3, the most advanced, being optimistic in a way that they weren't, seeing the horror on their faces to hear my story. How am I supposed to get over that? Why did I get put in that position in the first place. And it wasn't just me, I'm sure all of those women that I feel for, that as soon as I heard their story I knew, wow she is in for it, it's a mess and it's only going to get worse. I'm sure they saw that expression on my face too and they are sitting in the middle of this new sense of doom themselves.  

    I am so glad that I bailed on the one day workshop, when the organizer pressured me to go to that and I bailed way back when I was still so much weaker and the middle of it. Imagine if she had dumped this doom thing on me then? If she runs things so that there is nothing happening except to make you feel terrible about yourself, stripped of yourself and reduced to being just your cancer, then that workshop would have been the worst thing that could've happened to me. So glad I bailed. So glad I sensed it was not going to be good and bailed. 

    At least now I am strong enough to see this for what it is. That this sense of doom is coming from the support group, and not from the group itself, not from those women themselves it's coming from the way the group is organized. Though maybe there is something inherently not great about putting a bunch of people with the same disease together, maybe it will always just re-enforce the disease aspect and negate the person who has the disease, as if the the disease is the most important and permanent part of what's going on here and not the other way around. 

    At least now I'm strong enough to fight back. Hopefully I'll be able to dig my way out of this. Would I do it again if I knew? No. I would not have put myself in that position. Will I go to the next meeting. Yes. Because I'm afraid that if I don't face this again, if I don't find a way to beat this sense of doom, then it will fester and never go away. I don't want this to last, I don't want it to become a part of me. I want to beat it. The support group has been the worst thing about having cancer so far. The volunteers who bug me and creep me out, they have been the worst thing. They even bug my husband. It's these very old ladies who desperately need to be needed. It's these very old ladies who are nothing now but breast cancer survivors, they creep me out. Who would have thought. 

    But I still want to take advantage of the actual resources, the dietician who will come to the next meeting. The personal trainer. The laughter workshop. The Look Good Feel Better session was fun. And maybe I will find a way to over come this support group fiasco while I do that. 

    Yesterday was a medium day. I did get the vaccuming done while my husband was off picking up the translator at the airport. I did clean the bathroom. That's done now. The plants are done now too. It was an okay but not great day outside. Mixed clouds, no rain, windy, but not too chilly. I did go for a walk to the park and around the tennis courts. Solidifying my new route and new distance. And I had a nice nap too. Not a long one, but a nice one. 

    Today is the supposed to be a good day. Bright sun already. It's going up to +17 today. It'll be like a summer day. It's one of those days that will make the world suddenly pop out green. It's supposed to be warm now for the next two weeks. And then it will be May. The season for snow and winter weather will be over for sure by then. It might rain, but it won't be snow and cold anymore until next winter. This isn't Alberta, you can more or less count on a few months without a chance of snow out here.

    I'm going to celebrate the day, this glorious and rather abrupt beginning to spring/whipping right on through to summer, by putting out my balcony plants. I'll drag the herb pot out myself and get my husband to help me with the geraniums. I'll just put them out temporarily for now because I'll need to bring them in over night for the next while so we don't shock the plants with cold nights. Let them adjust to the new temperature even as they soak up in much increased sunlight during the day. The garlic chives can take it right off the bat. They grow up through the snow outside at this time of year. They will be fine. 

    I find that I'm less interested in cooking now. It's like I learned my lesson on that Sunday when I half killed myself making a lemon merange pie and roast in the middle of chemo back when I was so sick, I probably should've been resting on the couch instead. Resting more at least. It is a nauseaous, hazy blur to me, cooking that meal. I felt like it had been a waste. A waste of my time and energy. All of that for just me and my husband. He didn't even really like it very much as I recall. And I guess I felt that way about the shrimp salad too. It takes time to cook like that. And it doesn't really matter. In the end I am just as happy to just eat something quick and easy.  

    The smell of cooking still puts me off. I hate it when I can smell it coming from the bistro cafe downstairs. That is part of it too. I don't like the smell of food, and I can't taste it enough to really be worth all the trouble of cooking. Especially if it turns out that I take one mouthful and get that gag feeling. Better to let my husband do his own thing on the cooking front and I just eat whatever I can, and no big deal if I can't eat. And now that I'm off chemo I feel less of a compulsion to eat anyway because I have to build up my strength for another round of chemo. 

    These nerve things are taking longer. My tongue is still numb. My finger tips too. But I do have to say, I did have a moment of feeling grateful yesterday. I was in the last block of my walk and suddenly had this real appreciation for the fact that my feet are okay. I can walk normally. I can feel things with my feet and don't have to look down at where I'm walking, I can walk along enjoying the scenery and not being afraid of falling just the way I have always walked. I had a moment of feeling grateful for that. Really grateful. Walking has been an important part of my survival and will be an important part of my recovery, both mentally and physically. And I can still walk. I still have that. Uninterrupted. 

    And I'm taking the tongue and the fingertip numbness as temporary. And if not. Well I guess I'll accept that as still better than dying of breast cancer. Small price to pay compared to that. My nose has stopped bleeding. Did I mention that? And mostly I am not so sick and poisoned feeling. Next week, next Wednesday would be the first day I could've had surgery. And at the rate I've been recovering I can see where that would be okay. I would be strong enough then, barely. And for sure probably strong enough for my light day surgery. 

    Do I worry that my sugery is on the late side of the okay window? Yes, actually I do. Since they changed it to firmly on May 1 instead of May 7 it feels like that week would have made a big difference. It feels like somebody thinks my cancer could come back that much in one week so as to make a difference and cause them to fight for that week for me. So that scares me. What if it's coming back right now? Fast? What if my whole good prognosis is going south right now? What if this was the only good moment and I'm actually poised at the beginning of the real nightmare that's about to begin. 

    Why am I thinking that way now when I've been so relaxed and confident that I have the family slow assed cancer. It would not grow back that fast in six weeks no matter what. It's not like Henry See's brain cancer that doubled in size in three weeks. That grew back from surgery so fast that he had to have another operation within a month. It is like my brother's cancer that took three years to grow one tiny tumour in his lung. That tumour would've taken 10 years to grow big enough to bug him. And I say all that, but of course it could have turned into a lot of tiny tumours and then that would've added up to a lot of damage even if each one of them didn't grow very fast. 

    But I guess that is the idea, to get in there fast with the surgery so the cancer does not get a chance to grow back after the chemo stops. And I guess that could be happening, the cancer might be healing itself right now the same way that my nostrils and skin are healing. The cancer might also be recovering from the chemo, and equally fast. 

    Get it out. 

    That was my brother's feeling. Now I get it. I get how he felt. I remember that fat rat from my earlier nightmare, the one I couldn't kill myself. I could only roll over and try to let the weight of my arm, my body crush it slowly. That cancer nightmare. 

    Somehow I've gone away from feeling like the cancer was all dead and that I could probably walk away from treatment at this point and live a pretty normal life, that the rest of the treatment is just protocol now and the cancer is all dead. Or so dead that a slow assed cancer like mine would take most of the rest of my natural life span to grow back big enough to cause problems and kill me. I've gone all the way from feeling like that, to this cancer is back and trying to kill me right now. That I could die before the surgery, that terrible things will happen because we are giving the beast this much of a break. I was better off with the other thought. Even if it wasn't true. I was still better off with that thought in my head. I was more positive and relaxed and that would've helped me. Where does this paranioa come from. This sudden paranioa that I didn't have at the end of chemo, I did not feel anything like this when I walked out of the hospital feeling like it was the last day of school. Where did that happiness and positive outlook go? I should be in the middle of enjoying it now. 

    Partly it's because in fact it has taken me far longer to recover than I thought it would. There is that. It didn't really end on the last day of chemo. The effects of chemo only even begin to end on the nadir, the lowest point after the last day of last chemo. 

    The end of my bleeding nose is a big milestone. And I'm glad it didn't take months or years to happen. But I still don't feel all the way good. And I'm still really weak and I know it will probably take a year to build up my strength again. Even just as an athlete that was sidelined for months, without adding chemo damage to the mix. Just that alone would take at least months of careful training to come all the way back to where I was before. I was walking up the mountain two or three times a week, at a good three to four miles an hour pace. I was running around the whole park, run walk sprints once or twice a week. I was swimming more than a mile every week. I was doing yoga two or three times a week, riding the stationary bike for an hour at a mixed pace and ten minutes of intense sprints several times a week. It will take me a while to get back to that level. I don't really expect to be all the way back before next spring, even if everything goes well from here on in. So there is that too. I'm a bit discouraged over how far I am from where I was, and how long it will take me to get back there. And maybe I will never get all the way back there again. Maybe that was my high point. This is not like getting over the flu or a bad cold where you can feel like you're dying one day and a week later be pretty well back to your old self. Permanent damage has happened. I can feel that. I can feel I will have to be careful and discover for myself what is not possible anymore. And also how to build around it, work around it and get fully functionally again. Yes I was very grateful that I can walk. That is where it will all start. 

    Partly it is because my breast has changed. There is this dead, white, frost bite looking thing that's happening where the cancer used to be. That was starting  to happen during chemo and is continuing now. I should take it as a good sign. Cancer there is dying, is continuing to die. Or has died and I'm just seeing the signs now. The dead shells of cancer tissue. That is how I should be taking this. It's the white deadness compared to the angry redness that was going on last fall, the redness that frightened both me and the surgeon. What I have now is white and dead looking. And I just read how it can take months for the body to clear off the dead cancer cells and sometimes that's why it doesn't seem like the tumour has shrunk even though the cancer is all dead now. Months. 

    Partly is it because of the support group, hearing all their stories which were not so positive about cancer coming back. Most of them were recurring cancers with less reason that me to expect a recurrance. Most of them were stage 1 or 2 cancers that had recurred. Mine is stage 3. Stop this. Mine was stage 3. It has shrunk to basically nothing and it has left my lymph nodes. That makes it no cancer. Or stage 1 now. Yes it may recur. But so far the chemo has done it's job, and there is no reason to think it is growing back. It hasn't even been three weeks yet. Lighten up. Forget that lady who didn't trust her doctors and thought everything she was getting was wrong. Don't second guess them. I am within the safety window. They are doing the right thing as best they can as human beings. And so far it has worked. 

    Forget it. Today can be a cancer free day. There is really no point in thinking about it. There is nothig to be done in any case. I can't get them to speed up the surgery. And I can't get them to start any new/different kind of chemo either. Nothing to be done but get better. Relax and get better. 

    Today is going to be a beautiful day. Today will my first day to start playing with my balcony and balcony plants. That means it will be in good shape for when my sister gets here. We could sit out on the balcony together. This is could be a good week coming up. Enjoy it. Just live in the moment and enjoy it. 

    Dispatched: April 14

  • 13 Apr 2019 5:24 AM | Contact Me (Administrator)

    Saturday morning.  It's a grey day that's dawned. It's ugly out there now with all the debris of winter revealed and nothing green yet. The world is just rotting garbage coming up through the melting snow. Dead and brown plant life. It smells bad.


    All it will take now is one or two warm days and suddenly we'll burst right past spring and into summer. Spring is never much of a season in this part of the country. It does always seem to go from this lingering end of winter to the sudden warmth of early summer in a matter of days. And then too hot. Sometimes the too hot part can happen really quickly too. There have been Aprils when it's too hot. Often in May it will get too hot. Too hot for me anyways. So. I'm not in that much of a rush to have the weather turn. 

    Yesterday I did something normal. Even though it was raining, and occassionally coming down in a real sideways rain downpour I did my old Friday routine. I walked to the to post office, checked the mail and I renewed the box for another year. And then I walked home and stopped stopped to shop along the way.  Kept on walking home, in the rain, at a good pace. This is my old Friday routine. Get the mail. Do the office job finances. Mail the cheques and deposits. Send the Treasurer an updated statement and then take the rest of the day off. Go skating, go to the botanical gardens or the library, make a mini holiday of it, come home on public transit with all of the people who are ending their work weeks. Get that end of the week Friday vibe off of them and be set for my own weekend. Letting go of your work week on a Friday afternoon, it was a good way to help make that end of work separation for the weekend when you work at home. 

    I haven't worked for a long time. I've just done bits of things as i was able enough. It was a good distraction and helped me mentally and will help me go forward and get back in the saddle again when I'm strong enough. But I can't really call it working. Not when I compare this Friday to other Fridays. This Friday I went to the post office and got the mail all by myself, in the rain. And I did my regular route coming home. And it felt really good to do that. Just that. That was as much as I could do. Small steps. Getting there. 

    And also my mission now is not to get back to work. I can't do that. I still have too much treatment ahead of me. My mission now is to get healthy enough for surgery. Just take care of myself and keep getting better. That's my main mission. Yestereday was as a bit of mental health exercise, that taste of the old routines but not really any real work. And I guess it's the same thing as me doing housework on Saturday and laundry on Monday. Trying to keep my hand in somehow. 

    I have cancer. I want to spend this time with my family, with my good friends, with nature and doing projects that I like. These are interesting times coming up. I feel that. And I think, hope, that this cancer stays down, that I do get at least this two year break to try to turn things in a different direction. Half and half lifestyle. That is the plan for the next while. The initial plan. 

    Here is what I've decided. 

    I will not do Luekemia treatment. If that one comes up I will just go straight to palliative/hospice care out west, in Alberta. It won't take long, it won't be a huge burden on anybody. 

    I will do one more round of some kind of treatment if I get a small recurrance like my brother did. I think that will still be worth it. Depending on what that treatment is, how debilitating it is where/how the cancer has progressed. But that's pretty much it. 

    And if they discover that my original tumour is doing more than they thought, that there is this whole active thing still going on and I need to take the herceptin treatment, get the whole port thing put in and have chemo ongoing for another year? Damn. I wouldn't want that. But yes, I guess I would feel obligated to do that too. It's still part of the standard care. Maybe. Maybe I would do it. It really depends on what they tell me. I've learned from the AC that maybe it's not worth it. Maybe a lot more chemo is not going to be worth it. And the chemo itself does a lot of damage and it makes you pretty sick. At the time, and could be permanently too. I might reduce my breast cancer risk but I will also increase my risk of other cancers every time I do this to myself. So.

    All of this could take the next five years. I will be well into retirement age by then. I will for sure have to quit working altogether by then. And even my disabilty pensions will end by then. They are all geared for me before 65, in the working years. They are not actually endless. They depend on me being of working age. They will all end at 65.

    Today is almost like a normal Saturday. I am stronger. I feel okay. I probably could go swimming without any ill effects. 

    Yesterday I cooked part of supper. I tried a recipe from one of my new cookbook magazines. Shrimp cocktail salad. You poach the shrimp in an old bay boil, you make a shrimp cocktail type salad vinegarette, a bit more lemon but with the horseradish and ketchup, marinate the cooked shrimp in that for at least an hour, then mix it with lettuce and tomatoes. It's a bright, fresh tasting a bit spicy salad. It would be perfect for a hot day. And it was fine as an appetizer ahead of snow crab with garlic butter. I ate fresh tomatoes. No ill effects. And the greens were from my bottle garden. Boston lettuce, kale, and arugula. Yum. So that was pretty normal too. Cooking again. Friday night. 

    I am gradually coming back. Walking more and further. Starting to cook a bit again. Feels good. I'm starting to recognize myself when I look in the mirror. 

    My face is calming down. The whole allergic reaction is calming down. I've started using the dormer 211 lotion on my arms and hands, and face. I've started using the surgerical scrub brush on those areas (except for my face where I use a clean face cloth) and the dead crunchy layer of skin is coming off nicely. It's not so painful. It doesn't hurt when I bend my arm any more. The skin underneath is pink, it truly is like a sunburn, this damage. The dead skin is peeling off to reveal this pink new skin underneath. That is good. And my nose is recovering too. It has stopped bleeding so much. The scab is smaller and less bloody looking each time, and it's less frequent. For example there was nothing so far this morning. And for a while every morning was a big bleed-a-thon of big scabs from both my nostrils and the fresh blood when I blew my nose. This morning it was nothing. Just clear , normal nostril stuff. 

    And it appears that I might have escaped my husband's cold and the downstairs office cold. Simply staying away, not being in an enclosed space with those guys, santizing my hands every time I came up stairs from being down there to pick up a print out or send a fax seems to have worked.

    Today is housecleaning day. Same deal. Bathe and get dressed. Have some breakfast. And start with the plants. Then just work my way around room by room. Doing what I can. Stopping when I have to for rest or whatever. Today my husband is going to go pick up our Ojicree translator, they'll have lunch at the pizza place down the street. So I know I have that morning time free to tidy, dust and vacuum. 

    And maybe tomorrow, if I'm still feeling good, I'll do the traditional Sunday roast beast for dinner and create leftovers for soup and sandwiches during the week. Perhaps a big chicken? Perhaps a lemon merigne pie? My husband would like it if I did something like that. 

    I've discovered that these things take time. And I still don't have endless time. Yesterday I made the shrimp cocktail salad. I made it in the little bit of time with energy when I could have written up a few more thank you letters/cards. Or some phone calls. 

    Our scuba buddies have all just got home from their Cayman trip. I could not have managed that holiday. 

    Dispatched: April 13

  • 12 Apr 2019 6:20 AM | Contact Me (Administrator)

    It's just that I haven't been out socializing all winter. I even did the documentary screenings via Skype from the room upstairs instead of in person. Of course I was freaked out by a roomful of strange women. I made up all these reasons for that feeling. But really, and realistically that's all it was. And the fact that I over reacted that way to a bit of social stiumulation just shows that I need to do it more. The immune system quarentine is ending. And yes, I really do need to start getting out more - even if it's painful at first.

    Friday morning, 7 am, in the rain. This rain will wash away the last of the snow, those little piles of hard snow in front yards and dark corners of the back alleys will finally get washed away. That part will be good, and when this rainy part ends we are supposed to have warm weather for the foreseeable future too. It's almost the middle of April, it's about time. And it's realistic to expect that too. So, even though it's a grey and rainy morning I still feel good about the weather today. 

    Mentally I am still trying to fight back from the miserable experience at the breast cancer group on Wednesday. I feel like I am embarassingly ugly and that a black possibly contagious cloud of death hangs over me. I did not feel that way before. And I have had trouble shrugging off that feeling. It's harder than I thought. Why? Is it because it was a real life experience with real people and a lot of them, put against all this warm suppport and appreciation that comes to me at a distance? Is that why it's so much stronger and harder to fight even thought I know it's only superficial, those women don't know any more about me than I know about them, this is not a true assessment that I feel they've made. And actually, I don't really know what they were thinking about me either, if anything. The people who support me from a distance, and have been supporting me all along they know me better and over time. I deserve whatever opinion they have of me. I earned that. I know that the breast cancer group is just superficial. They don't know anything about me. It's all snap judgements based on first impressions. So why does it bother me at all?

    It's not the me part, not so much that. Yes, I do feel ugly, and I look in the mirror and I see the puffy face, puffy turned in eyelids, skin rash, baldness suddenly in a new light. It happened gradually, but it's startling to see it all of a sudden, through the eyes of someone whose never seen me before. Most of this will go away gradually. But in the meantime I did get a rude awakening about just how terrible I look right now, even if I'm feeling so much better. I look terrible. Part of it is that. That was discouraging. And I have to face those women again in two weeks. The whole mob of them looking at me like that. With a kind've special horror because it could be them. The ones who haven't been through their chemo yet do look on me in horror because it could be them, this could happen to them too. So it's worse than just encountering people on the street and in the stores. I may look ugly. But there are far uglier people than me out there on the streets walking around. I don't get this reaction from strangers out in public and in the stores. And my regular stops like the post office and the laundromat, people have figured it out that I have cancer, I'm a regular customer of many years and they are all nice and supportive. They are not horrified by my appearance. It is just these cancer women. And I get it too. I get why they would be horrified. I don't blame them. And I hope that it doesn't happen this way for them. I would have been horrified too if I saw someone with my face at the beginning of my chemo. But it's hard on me. It's hard on me to be the object of this horror. And I don't know if this is also a particular city thing, this big emphasis on appearance. This complete judging by appearance, some kind of big city way of relating to so many people that you see but will never get to know. Perhaps there is a bit of that thrown in too. And fashion and appearance is a big, big part of the culture here. And it's a part that I don't relate to particularily well. It's not my thing. 

    So there is that. But the really big part that upsets me is the cancer part. I feel like the walking dead. Dead man walking. These people know more about cancer. They are all afraid to hear it's gone to their lymph nodes. They know what that means. They are even more afraid of that than they are of being ugly for a while. Stage 3 cancer. My survival rate is 75% compared to theirs which is 80 and 90%. They are and perhaps rightly concerned that they are getting all this chemo and radition treatment for a cancer that's been removed with big, clear margins. They don't seem to understand that is the reason their survival chances are 80 and 90% instead of my 75%. The niece made me feel better about it when she dismissed the numbers, saying that it's averaged out over all the people who also have cancer in small towns and cities where the care is not so expert. I am in one of the best breast cancer facilities in Canada. My odds will go up just from that. She dismissed my dissmal stage 3 forecast quite easily. She's smart, she's a journalist who did several big feature stories on cancer. She's done the research and had it fact checked. I trust her perspective. And I know that I have the family slow assed, lazy cancer so it is not so bad as it looks on that account too. I believe in the look in the niece's eyes more than I believe in these other women. 

    So, why is it that I feel so doomed ever since I went to that group meeting. I feel like I'm wretched now, and doomed for the future. I don't believe the cancer prognosis is so bad as the look on their faces. I do believe in the happiness of that last, last-day-of-school visit to the hospital where everyone from the doctors, to the nurses, to the receptionists were happy for me. I believe in that feeling of having graduated from stage 3 cancer up to stage 1 and a 90% chance of survival now. I believe that feeling. 

    So, what have I done? Why have I incorporated that feeling of a whole room full of women looking at me in shades of horror, both for the ugly way I look now, and my doomed future. I've decided that I will develop Leukemia and die a short but horrible death in about two years. I'll get over this treatment just fine. This treatment will work just as it has and I won't have a significant recurrance or relapse, but the treatment will not only make me ugly now and temporarily, it will not only disfigure me in the future when they do the surgery, it will not only add a layer of radiation damage. All this is just to make sure the breast cancer does not come back and kill me over the next 5 or 10 years. It is too late for me anyway, because the changes that will cause me to die of Leukemia in just a couple of years have already started. The breast cancer part is irrelevant now. That is what I have done. In some part of my mind where I don't reason things out properly. That is how I explain that feeling of horror, that sense of "whatever I'm going through at least it's not as bad as her" feeling that I got from the room on that first group meeting night. I felt it, It was a strong feeling, and it was a real life, in the real room feeling, so not something I made up in my mind. It was an actual vibe that I got from those women. I do have to explain it in my mind. I can't just dismiss it. I tried that and look what happened. It turned into this deep subconsious conviction that I'm going to die of Leukemia in two years. I've even started to plan my immediate future based on that premise. These are the things you do when you know you have only two years to live and the next four months at least will be in treatment, getting knocked down by surgery and radiation. Irrelevant surgery and radiation because you are already doomed to die of Leukemia. That is where I was at yesterday. I am acting, on a deep level like someone who has just been told they will die of Leukemia in two years. Sheesh. 

    This has to stop. The  risk of Leukemia is real. And the risk does go up based on dose, and also based on if you have radiation as well. I had a high dose and I will have radiation. So yes, the risk is there, and I am on the high end of the risk profile. What is the risk? 1%. Pretty much it's a fluke if I get it. 99% sure I won't. Let's be realistic about this. 99% I won't get it, even at the high end of the risk profile. My conviction that I will get it is not real, it is just a thing that my brain is doing to explain what happened to me on Wednesday night, what happened to me in the group session. It is the wrong explanation. My mind has come up with the wrong explanation. 

    Yes, they were horrified by my appearance. And yes, it is also true that they weren't all that impressed by my appearance way back at the beginning when I did the Look Good Feel Better session either. I don't wear makeup, I dress "sporty, casual" in a way that's not really done here in this city but that is perfectly acceptable, and even stylish in the rest of North America. I always get dismissed by the fashion divas of this city. I felt it back in my Pixcom days, even back then when I did look good, and men were still fascinated by me based on my looks alone. So part of this is that - taken to a greater extreme. A big part of it is that this cancer woman, survival culture is the wigs, makeup, fashion statements. And I'm just not part of that. It's not me. And I'm not interested in changing myself that much just to belong. I'm not that interested in becoming a "professional cancer survivor". I did resent the two stylish made up women, way too stylish and made up for a Wednesday night support group meeting the volunteer leaders who presented themselves to us saying how when they first joined the group all they wanted to do was become a presenter, and look there they were, they got to this point and we could too, they will help us to become - what? Professional cancer survivors? I don't want that. I want to get over this. And move on. Do something else. That's what I want. Shoot me now if 7 years or 17 years from now I think I've reached the pinnacle of my life by getting dressed up and leading a breast cancer support group. So there is that. Our goals do not coincide. I don't want to go where they are leading me. So there is that too. I am counting the ways that I don't fit in. I'm counting the other reasons why they might look on me in horror and want to distance themselves from me. I am counting the more realistic ways. 

    And the other one is me. Me myself. Me being cold and abrupt in my presentation. Just the facts ma'm. Face it when I'm intimidated in that size of group setting, and then freaked out by some big drama with crying and yelling going on ahead of my turn to talk, and seeing that drama go uncontrolled by the group leaders, then yes, I can't get to that open place in my mind, where I'm relaxed and just put myself forward. Open up, be like a flower as one person said it who admired how I can do that, sometimes, when I do it well, and just present myself. As many times as I've run over what I should've have said instead, and could've said instead, the real problem is not so much what I said as the fact that I was freaked out by the situation in the room and just shut down, closed off. I was closed off and probably came across as cold, arrogant and hostile. Snobbish even. That is how I come across when I'm feeling scared like that, when I'm hiding behind walls. I know that. That would also be off putting. I know that too. 

    Add that on top of the fashion backwards attitude. The off putting appearance. And the grimmer diagnosis. And you can start to see their reaction in a different light. Maybe it's just me being at my worst in meeting new people. Maybe it's just me messing up in that way. I've done it before. I know it takes a while to come back from that, that it takes a while of me being my best me and eventually they always come around. Because people generally like me once they get to know me. The version of me they don't like is the one I create when I put up a mask for them to shoot at instead of standing up and just being me. That is a big part of what happened, and maybe even all of what happened on Wednesday night. That does not lead to Leukemia. That does not mean I'm dying of Leukemia. It just means that the group was set up badly in the first place, and then to add to that there were some truly needy women who did act up, and the volunteer leaders were not strong enough or capable enough to manage the situation. 

    I haven't been outside the apartment at night since last October. This was my first foray into in person, group dynamics, with a room full of strangers in a long time. I'm out of practice. And this is my hardest thing. That exact size of group, the fact that is was all one gender, and even one generation, except for me, I bet I was the only grandmother there. So I felt like I didn't fit in anyway. And I didn't. Just looking around the room before anything happened. And being called out in front of everybody for being late, indirectly in that passive aggressive way - unjustly because I was in fact 3 minutes early. These things are all more likely reasons for why I felt so bad after that meeting. Not because I am doomed to die of Leukemia in two years. That is probably not the realistic reason I felt so bad and just wanted to get away as fast as I could at the end. 

    Get that subconsious? Stop with that hypothesis. It's not realisitic, it's out of proportion. It's an out of proporition reaction. Yes it was a bad social interaction. And yes, it was partly my bad too. I did not rise to the occassion in a good way either. But that doesn't mean that they are horrified, and really were they horrified, or just didn't form a good, friendly first impression of me. And i was the one who was horrified because I've gone and messed it up, in my usual way, when I'm at my worst. Perhaps I was the one who was horrified. They just formed a mild, general 'shrug'. And I was horrified. That could be it too.

    Talking myself out of giving "them" the power to pronounce my doom. Taking back some responsibilty onto myself. I wasn't so great. Accept that. And also, that gives me some power back again. This is on me. Partly on me anyway. Let's not let this get to me in wild, powerless, me as a victim, scapegoat ways. 

    Because there is a danger. I know that one of the things that made E feel better during her cancer treatment was seeing people who were so much worse off than she was. I know that people see that, and feed off it. I know that is a real danger here too. Because most of the women in this group are younger and more attractive and have smaller cancers caught early. Only a few of them are in real danger. I am one of them. And there are couple of others. I am the oldest, and most beat up looking. So I am actually the worst off of this group. And I do stand at risk for that particular role. Making everybody else feel better because they are not as bad as me. 

    That role sucks. And the only thing that might've saved me, and still might save me is being super nice and adorable, some kind've grandmotherly example of how to do this. Do I have the energy to try to do that, to go there, to become part of this group in that way? Not really. That's the thing. Not really. I don't care that much. I guess I'm not that interested in forming friendships out of this bad experience that I would not have made otherwise. I don't want to be endlessly part of a cancer survivor group. I have no interest in being a group leader. But I can be nicer, and warmer. I can just be more me, and more human. I don't have to close myself off. I know what this is, fear. But I'm stronger than that. I don't necessarily have to 'perform' the whole time that I'm in one of these group meetings. But I can be more relaxed and open. I think. Yes. The fact is that I am afraid of this group of women. They are like a hostile mob to me, in my mind. An out of control, potentially hostile mob. For me it was a bad beginning. 

    The best way for me to get myself out of this mental state is to go back there, face the situation and neutralize it. The best thing now that I've had such a bad, and actually quite traumatic experience is to go back there and be okay. To walk out next time feeling if not loved and popular at least neutral. Unremarkable. Not the scapegoat. Be nice to everybody. Listen to them, give them empathy. Don't get caught up in my own fears. Don't be afraid. Don't be a victim. Don't let that happen. Stand up. Don't hide and put up the mask instead. Nobody ever likes that mask. It never works. Yes. Even if I do have to make myself walk in there imagining myself as the 'character' who can do this. Live that character, be empathic, make jokes, be kind to others. Be charming. I don't have the energy to do it a lot. But I can do it once. Now that I know what the situation is, I can go in there next time and put myself on a new footing. And get neutral. Walk away from that one feeling okay. That's a goal. After that I can decide, realistically and objectively how much I want to keep up with that. Perhaps then I can quit altogher. Or I can decide it's okay and keep on with it. 

    And I guess another part of this for me is that I actually don't need it. I'm sort of past where they are trying to take me. And I feel like they pushed me back to the beginning so that I can be in step with the group. I've already had a one on one with the dietician. I already have a one on one appointment booked with the lympedemia expert. I have been able to relax and sleep well during this whole process. When I look at their list of things to learn about I've got most of them covered already. 

    It's just the group dynamics. And even that. I have my cancer friends. T, E and D. They are real friends that I knew from before, and that I will continue to know even as we all get past our cancers. I have had this chance to see the different ways that women are treated according to their particular cancers and situations. I understand that while there are protocols in place and we are not guinea pigs, they also adjust the treatment to the individual. And my friends are good examples of how you react to this. They are strong women. I knew they were strong women from before and they are strong, each in their own way as they go through this. 

    I don't even need this cancer group on that account. I don't need it for that sense of group support and advice, and feeling less alone and like I'm the only person who ever had breast cancer and why me. I guess that was the object of that first round table - telling our disease. To dispell that impression that you're the only person to ever have breast cancer. It went wrong. It got highjacked and went wrong, but I get it now, as I talk about the value of these two friends in my life right now. I get it what they were trying to do with that round table. I didn't appreciate it at the time because this is something that I already have in my life. It's good to have it, and I can see that would be a good first step for other people to go through. So lighten up. Perhaps they were also just freaked out over that. And over having to talk about their diagnosis out loud. That too. 

    I am like a teenager thinking everybody was focused on me. In fact probably most of them will not remember me. Most of them are caught up in their own story. They aren't paying that much attention to me. They don't care. They are all sick too. They have their own problems. I don't remember most of them. I don't remember women who are stressing out because they said too much, or too little at their own little presentation moment. I don't even remember them. Or I've blurred them together. I have them mixed up as to who said what, who has what cancer at what stage of treatment. I only have this messy impression of lot's of cancers, all acting differently, lot's of women all reacting differently. And maybe that was the whole point. And let it go at that. Be done with that first session. Point taken and let it go. 

    Next time the dietician will be with us and that will be a good chance to get tips for this stage of needing to lose weight now, is there a better way to do that, the same as she recommended the high protien, low fiber diet to help me get through the chemo. And that worked. And the cream of wheat worked too. So, yes, I should be looking forward to the next meeting and having the dietician with us for an hour and half. That will be cool. And it's true. Mostly people won't remember me any more than I remember them. I am not entrenched in some role. Everybody has too many other things going on their lives right now to care that much about these social dymnamics. And also I bet it will be a smaller group next time. I bet that people start dropping off. And that will be more comfortable and manageable for me too. Relax. Chill. Take a deep breath. 

    Forget this business of dying of Leukemia in two years. Forget this business of being a social scapegoat. These are just me, talking to myself, with nothing better to think about, being afraid. Me coming up with reasons to feel afraid. New reasons to feel afraid. It's just that I haven't been out like this all winter. I haven't been out at night all winter, or even out at all. I even do the documentary screenings via skype from the room upstairs instead of down there in person. Of course I was freaked out. I guess that's why I had to give myself all these reasons for the feeling. But really, and realistically that's all it was. And the fact that I reacted that way just shows that I need to do it more. I need to start getting out more. The immune system quarentine is ending. And yes, I do need to start geting out more. This is the next step after my son coming and dragging me around further, and faster, outside, pushing me a bit. This social thing is the next step after that. Relax. Chill. It's okay. Yes I was freaked out. But when I look at it this way, that reason, a long period of social isolation is sufficient. We do not have to invoke Leukemia or scapegoats. It's not all that dramatic. It's okay. Those are only just enlargements of my own inner fears, exaggerated way out of proportion when juiced up with some actual, only natural fear of getting out and about after being confined to my 'sickroom' and ill lifestyle for months on end. I have never had an ongoing illness like this before in my life. This is new to me. Of course it's frightening. Accept that. It's okay. Normal, natural reaction. Keep it in perspective. That's all. 

    And so yesterday was not so bad. I forget about all these things during the day. I did indulge myself a bit. I am being nicer to me than I had planned. I realized that it was harder and took longer to get over that last chemo, that I am still in fact getting over chemo and that I don't have to push myself to be all better now just because it's three weeks later. I do feel better. And I like that. But I'm not all better. I am still recovering. And that is my priority. My health. Me. Recover as best I can while I have this break. Get as strong as I can mentally and physically so I can go through the surgery in the best way possible. So I can withstand it, and recover from it without complications if possible. That is the plan. 

    Yesterday I did laundry. I did two loads, which was twice as heavy to carry. It was extra exercise for me. And I did feel the weight of it. My ankle did bug me on the way there. I did have to rest it and walk more carefully on the way back. But I did it. I washed the sheets and duvet cover, and all the towels. That was all good. And it was a higher level of physical work than I've been able to manage for a long time. Carrying the extra weight back and forth to the laundry mat, and also pulling the sheets and duvet cover off the bed, and putting the new ones one. A big enough job, physically. And satisfying to do it. 

    Yesterday I walked off to the post office and mailed the thank you cards and letters. I feel good about that. I showed the letter to my husband before I mailed it. He got a bit choked up and said it was lovely. I have a few more to do. It's good for the people who get these cards and it's good for me to do it, voice how grateful I am for their support. This is the perfect time to do that. 

    Tomorrow is housecleaning day. As I can, what I can. My sister will be coming in a few weeks, so I am gradually working towards that. Getting it ready for her so I don't feel like I have to rush around and do a big houseclean on the weekend before she comes. And it feels like spring cleaning time. Maybe I'll take on a section of my office here. Clean that out. Get rid of stuff. Perhaps to my income tax stuff now that I have all the documents, I should probably do that. The deadline is the day before my surgery, don't want to get caught up in trying to do tax stuff at that time. So, it's general houseclean, and income tax for tomorrow. Or next week is all free. I could do it then too. We shall see. It depends a bit on how I feel. 

    Dispatched: April 12

  • 11 Apr 2019 6:56 AM | Contact Me (Administrator)

    It was like being the ugliest, the one with the most pimples, the fatest, the shortest, the dumbest, the clumsiest, the shyest, the oldie. All those prejudices that are not race, religion or sexual orientation. That's what it felt like. And now I have to drag myself out of that mental state. I have to get over how bad that whole first breast cancer support group experience felt. 

    I have been getting support from other people who have cancer. We knew each other before cancer. We know each other as human beings first. Cancer has given us something in common and drawn us closer. But we still know each other as individual human beings first. That is a better support group for me. Remind myself of all the real support that I have in my life.  

    Thursday morning. 6 am. The sun is up, but just. I'm finally feeling mostly good all the time. 

    Here is what I wrote to my friend J yesterday. 

    "It's been a couple of weeks without chemo now and I'm feeling more human. I even caught myself being a bit restless the other day. I haven't had that much energy since October. And then I got this odd, not great feeling. At first I thought it was yet another side effect of the unique torture that's been sent to plague me disguised as chemotherapy, and then I remembered the feeling from the days before all this started. Bored. I was actually bored. Holy smokes I am feeling well enough to get bored. Finally. Yahoo! (I think)"

    These have been my new symptoms, restless and bored. But not very much. Not very restless, not very bored. 

    Yesterday was not a cancer free day as I'd hoped. I went to the newly diagnosed breast cancer group. And I wrote thank you letters and cards. Not to everybody, we're not at the end of treatment yet, but to those who have been following me closely, sending me random cards to let me know they are still thinking of me. And that was good. I'd do that myself for other people. I did those random things for my brother, and just getting cards in the mail, from someone who sent you a card last month, a funny card, just saying thinking of you, with nothing to do or reply at that moment on your end was really nice. It was a nice pick me up and you didn't have to feel bad about being too sick to respond properly. I sent cards to those people. This is what I do on these first feeling better days. Thank those freinds and family that have really been supporting me all along. 

    And then it was off to the breast cancer group meeting. I was curious about it. I have never been to one of these things before. But I've seen them on movies and TV. They've been a part of a lot of different plots. The cancer support groups. The alcohol & substance abuse groups, the grieving parents/spouses groups. The mental health groups in hospital and out. This is the first time I've ever been invited to be in one of these groups. And while I feel like I'm handling things pretty well I was curious, plus I do want to take advantage of all the services that I can. This is the part that did not happen for my mother, or my brother. And I this is the part that I recognized as missing and saw how it hurt them, and also everyone around them, us caregivers. It made it harder on us. And we needed support too. 

    It wasn't like the movies or the tv shows. There the groups are around five or eight people sitting in chairs in a circle. Or a larger group sitting in rows or half circles looking at a podium where people get up and take turns speaking. Our group was twelve people crowded around a big double wide table with three group leaders. Two were breast cancer survivor volunteers and one was the shrink. Fifteen people in all. In a small room. Too many. That crowd was too many for me. At least presented in that way. We should've been the in rows, looking at the podium with breaks and spaces where we could hang out and follow up with each other casually on an individual basis. The way this room was set up you could only talk to the people on either side of you and that's it. I also didn't like the what happened at that first meeting. The survivor volunteers each told us their breast cancer stories. "I was diagnosed like this. My treatment was that. It's been 5 years for me, 17 years for me. And now each of you tell your story." And so that's what it was. Because there were twelve of us it took more than an hour just going around the room telling our cancer stories. Man it was depressing. I wasn't depressed when I went it, but I sure started getting depressed during that first session. Each of one those individual women was reduced to her breast, her diseased breast and her story of diagnosis and treatment, where they are at in their treatment plan now. Not a word about who they were outside of being someone who had breast cancer. 

    As a little statistical thing it was interesting. 

    Out of all those women, only one of them had been diagnosed through a regular mammogram screening. All the rest found their cancer themselves and went to their family doctors who sent them for a screening and some did not have family doctors and just went for a screening on their own. 1 of 12 had their cancer diagnosed through a routine mammogram. What does that say? And none of the ones who found the cancer themselves did it by doing a routine self-exam either. They all discovered their lumps by accident while doing other things, swimming, showering Followed the lump for a while themselves and when it didn't go away, or when it started to grow dramatically then they went to their doctors. With that one exception they all had this instinct themselves that something was wrong with their bodies. That is what started them on the road to treatment. Much like me. I am not so unusual in that regard after all. 

    The age range was mid-thirties to sixties. Younger than I expected. I was the oldest woman there. There were older women at the Look Good Feel Better session last fall, but I remember now that they were on their second and maybe even third cancers, those women in their 70s and older. 

    Most of the woman had been diagosed with small cancers, had lumpectomies for that, no chemo, no radiation. And then they discovered more. And so now they were back for real treatment and more surgery. Two have aggressive cancers. I had the most advanced cancer of the group. I was the only one there who knew I had it in my lymph node already. There was a big mix of who had surgery first, and who had chemo first. Some of us had bald heads with caps, some with wigs and some had their own hair either because it had grown back after treatment or because they hadn't started their chemo yet, or they had just started. 

    There were a couple of really needy, angry women who hogged the time. They hogged the time when it was their turn to talk. They were dramatic and they cried. And they also interrupted other people when they were talking and especially they interrupted the group leaders and also talked to their neighbours as the group leaders were talking. The group leaders did not get control of that. So it was a bit chaotic and in effect run by the most messed up, loudest women there. They hijacked the agenda for themselves and their issues. That discouraged me. This is not really my kind of thing. Too big to be intimate. Too small to be anyonous. And there was a little lecture about not being late that they gave just after I arrived - I looked at my watch 3 minutes to 7. I was on time. And three other women arrived after me. I guess that was part of why I was a bit sour on the group thing. This is what I don't like about the Wellness Centre. The way they have this layer of beaurcracy, that doesn't really work for sick people. Forms, interviews, rules about attendance. So there was that too. 

    But. The future sessions have themes that interest me. The dietician will come to the next one so that will be good. And they'll have a lymphemdia person for a whole session and that will be really good too. And hopefully a number of people who were there tonight will drop off and the size will be more manageable. We shall see. I don't have to do this. I can drop out myself if I want. But I shall keep going for a while anyway, and probably through the whole thing, because the one I want, the lymphemedia session is almost the last one. 

    No I did not get to know anybody. And no there was no way to tell if I was going to find a new friend in this group. I only know them by their cancers. And I actually don't care about their cancers very much. Hopefully as time goes by they will step out from behind their diseased breasts and become more human, the ones who are quiet and don't hog the show, maybe some of them might be interesting, I might click with some of them over time. 

    I also did not hang around and try to get to know anybody after the group broke up for a tour of the building. I was intimidated by the drama queens. I just wanted to get away from them. I wanted to get away from that whole, this is all about your cancer atmosphere. I felt like I was the biggest loser in the group because I had the most advanced cancer. And it didn't have the glamour of the two women with aggressive fast moving cancer and the Angelina Joli effect. And there was only one of me. I felt discouraged about having the most advanced cancer in a way that I haven't been for a long time, if ever. So. If I were to assess the benefit of last nights group meeting I would have to say that it's impact on me was completely negative. I was in a pretty good place when I went in, and that meeting sure did take me down a peg or two. Or three. 

    But I still went to the front desk on the way out. I still asked about the laughter workshop. I am still going to try to go forward with this Wellness support thing. I am allowed to take advantage of this for the next two years. The shrink said that they like us to be out of there after two years. They look at it as a recovery centre. Sometimes people like to stay on, it's a free gym, massages, personal trainer, etc. Why wouldn't you want to stay on? But we need to move on after a couple of years, get on with our real lives and make room for new people to come in. Of course then it made our volunteer leaders look bad and as if they were 'professional students' who just wouldn't graduate. I guess it's the main shrink herself that I have a problem with.  Not her as a person, I just don't approve of the way she has set things up. The way she manages the program. 

    And so today. Physically I continue to feel a bit better every day. It's Thursday and my hands are pale. My face is pale. No big red allergic response. I tried the dormer lotion on one hand the day before yesterday. It was okay, so I tried it on both hands and my face yesterday. It was better than the coritisol cream. It works better on the dried hard skin. Just the way it takes off the hard calluses on my feet. And it was great on my face. My face has not felt so good in a long time. My skin is softer now. That was a nice discovery. I shall keep up with that. I'm okay. I need to get over yesterday's big downer where I felt a) like I didn't belong. And b) like I was the worst of the cancer stories on top of that. It was like being the ugliest, the one with the most pimples, the fatest, the shortest, the dumbest, the clumsiest, the oldie. All those prejudices that are not race, religion or sexual orientation. That's what it felt like. And now I have to drag myself out of that. I did not put myself out there quickly. I was too intimidated by the drama queens who did that, and in such a negative way. And now I have to get over it. I have to get over how bad that whole group thing made me feel. 

    I am doing better, physically I'm doing better. And I have a lot to be grateful for. I am well loved by a lot of people. Even if that group didn't like me, even if I may turn into the scapegoat. Me, afraid of that group of women that the group leaders cannot control. That kind of thing is my worst fear. I hate being put in that kind of situation. I have a whole string of cards from friends and family. I have a whole box of hats from friends and family. The neighbours hug me on the street and tell me what a good person I am and how they are all watching out for me when I head out on my walks. They don't care if I'm not doing the makeup-up, wear my wig and present a good front to the world approach to cancer care. They love me anyway. They don't love me because I have cancer. I am not cancer to them. They love and respect, like and appreciate me for me. And they don't want to lose me. That is a whole different kind of support. And I have been getting support from other people who have cancer, and even other people who have breast cancer. We knew each other before cancer. We know each other as human beings first. Cancer people second. Cancer had given us something in common and drawn us closer than we were before cancer. But we still know each other as individual human beings first. That is a better support group for me. Remind myself of all this. 

    Don't let the Wellness Centre group get me down. Don't keep rehashing what I should've said, or should've done to establish myself in a better position earlier on. Just let it go. Be nice to me. Don't let that one bad situation shine brighter than all the good that surrounds me. Even if it's human nature to do that. Fight it. Concentrate on the good stuff. I have a lot of good stuff to concentrate on, and I've got myself to a good place. I was in a good place when I went into that support group. Ignore what happened there, take what I can out of it, but don't let it get to me. That's my plan for that. And who knows, maybe the next sessions where cancer itself is only part of the conversation and not the whole conversation may work out better. 

    Here is the really good thing about last night, besides the delicious butter chicken pie from Ta. I went out at night. I realised that I haven't been out at night since the diagnosis, not since treatment started last fall. Not once. I stood on the step waiting for my husband to pick me up and it snowed. Gentle snow flakes falling down. Everybody else was pissed off to see the snow as they came out of the building. But I waited outside. In the dark, watching the snow falling down past the street lights. Lovely. I felt a quiet inside me, a deep, night time, gentle snow falling quiet. Nice. And then after my husband picked me up and we were waiting at the stop light I noticed the lights in the trees, a new kind of light twinkling there. That was beautiful too. I commented on that and my husband said they've been there all winter. I said, but I haven't been out at night all winter. I haven't seen them before. It was good to go out at night again. Expand my life back into normal in that way. That was good. 

    The sun is shinning, it's going up to 7 degrees today. And then after that it will be up in the double digits for the rest of the week. 11 to 17 degrees. It's April. I think we are truly getting to the end of winter now. Soon I will be able to start hardening off the garlic chives and the window box geraniums. I'll be able to put them outside during the day, bring them back in at night for a week or two, and then put them outside altogether after that. 

    I have a free schedule today. I can do the sheets and towels, household laundry. Be nice to me day. Enjoy days like this while I have them. This can be a day off cancer. I feel good and I have no appointments. Just one thing, to call and register for the laughter workshop on Monday afternoon. Just that. And that's not really cancer. It's at the Wellness Centre, but that's one of the good things that I do want to take advantage of there. 

    And that's it. I can go for a walk around into the park again if I feel like it and the day is nice. I can start wearing my wig and looking a bit less chemo head if I like. That is one thing I did yesterday. I looked up how to put on a wig on the internet. I was wearing mine wrong. It was too loose and that's why it was sliding around my head and feeling both like it was going to fall off and scratchy. I once I learned how to adjust it, how to manage those tab things and adjust it, and then how to put it on correctly then it did feel much better. And I think I could wear a wig, and probably will wear one more this summer. I could wear it all summer after it gets too hot for toques. 

    I have talked myself back into that warm, loving me, appreciating me feeling inside again. It's okay. I'm okay. On with this day. 

    Dispatched: April 11

  • 10 Apr 2019 3:55 AM | Contact Me (Administrator)

    You see them in the movies and on TV all the time. Of course I want to try experincing group therapy for real, in real life for myself and see what it's actually like. I'm curious more than anything. And it feels good. It feels good to feel well enough to be curious. This feels more like the old me. Being curious. 

    Wednesday morning. Feeling pretty good. Feeling like me. Feeling like me more at the beginning of the chemo, not like me last year. I woke up in the middle of the night with that 'trembling' feeling. This 'trembling or  shakey' feeling is something that I never had before chemo, but that I recognize quite well since I've been on chemo. And it has been the exact same feeling in both kinds of chemo. It is an all over body feeling. It can very in intensity from a sense of trembling right up to a sense of shaking. But you aren't actually either trembling or shaking. It is an inner feeling. And when I say that I realize that it could be confused with an emotion. But it's not, it's a purely physical sensation this trembling or shaking in your whole body. It does not hurt. It's not painful. It denotes weakness. And in some ways it does remind me of exhaustion. Except that you are not tired. You're not physically tired the way you are after a big run, but it is a similar kind've weak, shaky feeling but without the endorphines. It's not a 'good' satisfying exhaustion the kind you get after working hard. In fact it has zero emotional content. It is just this sensation of your body working in overdrive, to the point of that trembling, shaking exhaustion but you're just lying there in bed, waking up, doing nothing. And yes, how trembly or shaky you feel as you wake up is an somewhat of an indicator of how weak you will be when you get out of bed and try to do things. But it's not an indicator of how weak you will be all day long. Once you get up and get moving it starts to go away. It's like whatever your body was busy at all night long, to the point of exhaustion, it stops doing it after you wake up. Once that settles down you can go ahead with your day. 

    This is not the same as the 'shut down' that can happen during the day, when you least expect it, your body says okay that's enough, we have more important work to do than this silly walking around, standing up, whatever we are trying to do now and just starts to shut down, you have to sleep. Right now. This instant. You have to lie down and and sleep. That is also a feeling that seems to be fairly unique to chemo and common too. Everybody seems to recognize that one. 

    Recovering from chemo is a bit like rewinding the clock I am going back in time to feelings that I had last fall, near the beginning of this journey. Perhaps it is the fact that the weather is changing too. The temperatures are similar, the length of days is similar. Perhaps that also reminds me of how it was with me last fall, who I was last fall when I first started all this. 

    Yesterday I took my son's advice and while I couldn't go for a walk on the mountain, not yet, I did decide to go over to the flat park that lies at the foot of the mountain, just a couple of blocks away. I could have been going there earlier. It's only a couple of blocks after all, but I didn't. Why not? Physically and mentally it's in a whole different direction. Mentally it takes me backwards to a lot of bitter sweet memories. That is where we used to walk Moose the dog in the glory days when he was in his prime and had to have that walk, and play in the snow or chase tennis balls, and socialize with the other dogs or he would be too restless to live with us inside in the apartment all day long. For a long time it was a place of blissful ignorance about the future and how one day he would not be able to make it to the park anymore. One day he wouldn't even want to try. But for a long time he loved it there. And so did we. And I forgot. That is where only last year, at this very time, that is where I started to run a couple of times a week. I did sprint/walks around the park. I put on those wild hot pink, glow in the dark running shoes and ran around that very park. I was getting over the Moose story and the sadness and making new happy memories instead. And I was being fit, and getting fitter and I'd just discovered the joys of that kind of intense, short burst of exercise. Last year. At this exact time. The snow and ice was only starting to come off the walkways. Just like yesterday. 

    Yesterday I was able to walk there, slowly. And I was able to walk around the tennis courts and back. Not the whole park. Not yet. 

    But in the world where my walks in the neighbourhood are getting longer I have moved from only being able to do the short walk to the corner that Moose did near the end of his life, to the walk around the block and down alleyways that we did for the second and third walks of his day, to making it all the way to the park and the tennis courts. When he was a puppy that was as far as he could go. To the park, around the tennis courts and back. I am up to being Moose as a puppy. Not close to being either of us in our primes. But now that the chemo has stopped I can look forward to getting stronger. If I keep on going out every day, if I keep walking every day I will gradually be able to get further. I'll extend my range. I've moved into more positive territory already. 

    I have these mental measuring tools. I am only able to do the walks that Moose did  when he was old and starting to die. I am now able to do Moose's short walks, the ones we did in the afternoons and evenings, toilet walks, but also social walks that took us out and about the neighbourhood in all kinds of weather. These walks are the reasons that the neighbours know me and recognise me and watch out for me as they see me out there with no eyebrows and a toque on my head where the long, silky hair used to be. Fifteen years of those walks. Now I am able to go back to the park again. I can go about as far as Moose's 'book end' walk. He could do the walk around the tennis courts when he was a puppy and just growing big enough to be a real dog. And also when he was an older, but still happily active dog. That is where I am at now. It's progress. 

    I guess I did not go this way earlier because I was afraid to fail that walk. I don't like to think that I was actually below that level. I didn't want to face that. I think that below that level is something that you might not come back from. Yes. I was below that level. I never got so low that I could not 'take care of my personal needs' as they put it on the insurance forms. I could always get up and go to the bathroom on my own, have a bath, get a glass of water, grab some kind of ready made food to eat. I never got lower than that. But I did get as low as Moose in his last months of being able to leave the house when he could only get to the corner, and we were so lucky that the city had put in that little garden spot with hardy meadow plants and the corner had become this mini-patch of meadow, a real destination for the old dog. I was down that low. But not as low as the last few months when he couldn't go down the stairs at all. And not as low as the very last bit when he couldn't even get up and 'take care of his own personal needs' anymore. I did not go that far down. But I did go pretty far. Far enough to scare me good.

    So I did the walk. I did the walk to the park yesterday. I went around the tennis courts, and on my way back I came down Moose's favourite back alley, the one that often had cats to chase, a really good dump spot, and sometimes dogs that would sniff you out under their fences and give you a good outraged bark-a-thon as you passed by. I did not see any cats or dogs. They don't care about an lone human woman walking slowly. Not anyone to run from, not anyone to bark at. I am in the wrong universe now for that type of back alley excitement, on a different parallel plane. 

    I did that walk while my husband was on the south shore taking Henry See for his chemo and radiation. Both at once. Henry's chemo is daily, but it's a pill that he takes. So it doesn't have all the complications of an IV. The radiation is once a day, takes an hour. 7 days a week. That is the thing about Henry's treatment that is wearing every body down. It's 7 days a week and it still makes him shakey enough that he can't go there and do it by himself, somebody has to take him. And also what happens with his treatment is quite different. He gets physio every day. His whole left side is not mentally connected to his brain properly anymore. The tumour broke that connection, they've removed the tumour since then and they are trying to rebuild the mental connection with physio. They give him different things to hold with his hand and ask him what they are. He can tell you when they are in his right hand. But doesn't recognize things that have been put in his left hand. He can't play the guitar anymore. But it's better than it was, it's better than when the tumour was re-growing and before they went back in and removed it again. He lost a lot of function then. 

    They told Henry that he had about 13 months to live if he didn't get treatment, that was at the beginning. So that would basically have been until this Christmas coming up. The treatment is to give him a longer life span, a longer functioning life span and it may even work to get rid of this cancer. It may even work really well. We won't know for sure until after the end of treament at the end of the month. Around the same time I go for my surgery. Henry in the meantime is also taking the cannabis cure as well. He's also just blitzed out for most of this experience. And perhaps that is the way to go. If it doesn't give you bad trips. Just exit the world until it's over one way or the other. It's not my way. I want to be in the world as much as I can, as intensely as I can. Otherwise what's the point of being here at all? But I know that not everybody feels that way. And I can understand Henry's approach. 

    He made friends in Fort St. John. The town got together and raised fifteen grand for his medical expenses and to help him out financially. He wants to go back there when this course of treatment is done even if his son and the rest of his family are all here. 

    I felt good yesterday. I felt comfortable all day. I was able to sit and write and work and do things for longer periods of time. I forgot all about having cancer every once in a while because I didn't feel so poisoned and sick. It was a good day. And it was nice to sleep in on a Tuesday and then have the day to myself and to just relax a bit. Even though. Yes I did errands. 

    Today is more scheduled. It's like this Wednesday curse for me. I was hoping to have a Wednesday, all day free to really feel like chemo is behind me. I don't have to go for chemo today. But I do have to do the screening for the documentary series, the last three episodes have been cut down to twenty-two minutes. And then tonight is the first day of the 'newly diagnosed breast cancer group' my husband will drive me down, and pick me up later. 7:00pm to 8:30. An hour and a half. Back in cancer land. Oh well. You never know. I might meet a new friend there. And I might get some good tips and insights into the future. And if I don't like it, I don't have to keep on going with it either. But I should at least try it. And there are a whole lot of other services that I can take advantage of too now that I'm through the worst of the chemo stuff. Now that I'm more able to get out and about. 

    Dinner tonight. Wings? Or not. Perhaps I could cook dinner. Something chicken but not wings? Or not. Perhaps wait until my sense of taste comes back? Still deciding on that one. 

    And off to the group session. Admit it. You see them in the movies and on TV all the time. Of course I want to try experincing one for real, in real life, for myself and see what it's actually like. I'm curious more than anything. And it feels good to be curious. It feels good to feel well enough to be curious. Yes that is more me too. When I bailed from the workshop I wasn't even curious about it. This is feels more like me. Being curious. 

    8:30 now, time to get ready to start this day. Just finished looking at all the scuba pictures that my advanced course buddy H has been posting. Fun. It is fun to do this vicariously too. And it will be fun to hear the stories when my scuba buddies get back from the Caymans. 

    Dispatched: April 10 

  • 9 Apr 2019 5:14 AM | Contact Me (Administrator)

    Zits. Of course that would be the first sign that I'm actually recovering from chemo. 

    Life. You are such a practical joker. 

    I have trouble imagining a nitpicking judgemental old man of a god. But I could believe in a teenager god pulling practical jokes and pranking us. Or perhaps it's a ten year old boy blowing things up and having a good time without really knowing what he is doing. Could be that. These days I could be convinced to believe in a god like that. 

    Tuesday morning, sitting here in the sun at 9 am. Slept in until 8 am this morning. It's a bit disconcerting to be up so late and to be sitting here writing with full sun beaming down on me. It worried my husband too, he didn't get on with his day until I was up and doing things, doing my usual things. He said he couldn't remember the last time that he got up before me. I do vaguely remember him looking in on me and being relieved/worried that I was still in bed. He's been sleeping in the guest room while he has this terrible cold and is coughing and sneezing half the night, so I guess when he got up and I wasn't sitting in my usual spot in the chair he got worried about where I might be. 

    What happened to me last night? It was a strange one. I woke up around 3 am, my old AC chemo wake up on account of nausea time but with a headache last night. It was enough of a head ache that I couldn't get back to sleep, but not so much that I was consumed with pain from the headache itself. I remember trying to go back to any of those places that I used to use when waking up from chemo side effects in the night. There was all the nice comfy beds I'd slept in in my life, that was a good one. But I couldn't find any of those places in my mind, my brain wouldn't settle, it wouldn't remember. It was a nice memory being me, simply being me and doing that little mind game, I felt like I couldn't do it any more and I wasn't me any more. And I remember how I felt after playing and completing that video game Myst from the the 1990s, how I felt like my brain has sharpened and become better from doing all those mental puzzles, from spending those weeks of my spare time in that world, listening to that calm sound track, looking at those incredible images and solving puzzles. I was living in Iqaluit at the time, it was winter. It was a really good thing for me to be doing for my brain. But after I solved it, I was only able to hold that improved mental state for so long, then it slipped away again. That's how I felt about the way I survived the AC chemo, those early cycles, staying calm, managing my thoughts, bringing all the inner strength of a healthy me to taking care of me going into chemo. 

    I've lost that, it's slipped away between now and then. I don't know whether it's the fact that it's just been so long, I've had so much more chemo, it's been a longer time now since I've been a healthy person that I can barely remember it, I can barely remember how to be that person. I don't know whether it's a result of the taxol chemo specifically. It affects your nerves. It's been three months of random nerve pain when I least expect it, where I least expect it, and in places where you don't normally have pain, odd pains that shoot through your body in odd places, extreme pain for a few seconds and then it's gone. 

    What the heck? Months of that can affect your mind, it can get on your nerves. And then the allergic reaction burns to my skin in the last month. Add that on top of the 8 weeks of random nerve pain, skin burns that hit you when you're minding your own business, just sitting there reading a book or watching tv, at no particular time, for no reason, all of a sudden you feel like you've just burnt yourself. Hit your wrist against the edge of a hot iron, leaned the side of your arm against the hot chimney of a wood stove. It felt exactly like that. And even worse, when you looked at the spot, it was red, it was red exactly as if you had been burned. 

    What kind of nightmare is that? Who would dream up a nightmare like that? Who would dream up a torture like that? Exquisite really when you think about it. But it gets better, or actually worse. Because it doesn't get better the way a burn does, the burn spot stays. You can't help it by running it under cold water. It just burns as long as it wants to. And then when it stops burning it doesn't heal. Real burns like this would started healing almost as soon as they happened. Every new cycle of chemo was like re-burning the old burns and then adding new burns. How is that for a nightmare? Pretty good, eh? 

    But that's not all. There's more. The new thing that's started to happen is bugs on my face. In all the places where the allergic reaction was - randomly - it's random and that part is important, I'm now randomly getting this feeling of bugs on my face, or maybe it's the light brush of cloth, or perhaps a hair falling into my eyes. Because it's random I forget that's what it is. It's some kind've weird nerve reaction or damage thing going on, maybe it's healing, like the itch of a healing scab, but not. So I feel it, and depending on where it hits, or how it hits I either think it's a bug crawling up my nose or debree falling into my eyes and I brush it away, a little freak out and I start brushing before I remember and go, oh, it's probably just that. How's that for adding to the nightmare?

    Mentally this has been hard. I should not be hard on myself if I am having trouble with it. Yes, it is harder now because people think I'm better. Luckily my husband doesn't think I'm better. My husband has been seeing it, and realizing that first I had to go through some of the worst of it, and then I have to go through all this - what - decomtamination? I don't even know how much of this might be withdrawals from some of the other drugs like the steroids. I feel withdrawals from taking asprin. If I had to take asprin for a week for some sort of injury or tooth pain I would always allow my self a day or two of feeling more pain after I quit, because you get used to not feeling your body, having it blocked, and then when your body comes back online everything that you feel, feels like it must be pain until your brain re-adjusts. I think a ton of that sort of thing must be going on with me right now. I'm only used to a bit of asprin now and then, nothing like these massive amounts of so many different kinds of deadly drugs. Yes I am having at least as much trouble with this recovery period as I did with the chemo itself going at full throttle. And in some ways worse. 

    Because during the chemo I basically just had to take it, take it and survive. I had a whole big team watching me for symptoms and side effects prepared to step in and take care of it when things went wrong. I had no responsibilty. I didn't have to worry about it. Not very much. If I was worried I just had to tell one of them at my next appointment, and that was never farther than a week away. Now it is on me again. Now it is on me to listen to my own body, know what's going on and to decide if it's something I have to deal with or not. I will not see any of these doctors again until the surgery and until after the test results from the surgery. I will not see those nurses again - ever. Perhaps I am also having withdrawals from such intense medical attention. Perhaps there is that too. 

    All this to say that I couldn't get back to sleep last night. I was anxious. I had sat down during the day and looked at my prospects for the future, my medical prospects realistically. I took a real, long hard look at them. They weren't all that great. They aren't as great as I've been telling everyone that's for sure. And they aren't all that great period. Then I let it go. During the day I let it go. I had that moment of get realistic, take a real, hard, realistic look so that you can make better decisions about what you want to do in the next few years, retire or not, those kinds of decisions. Use it to help you make better decisions and then let it go, don't dwell on it. Easy enough to do during the day. 

    In the night it bugged me. Especially the luekemia. That bugged me the most. It is partly because I saw it happen in front of my eyes on the Cancer: The Emporor of All Maladies documentary, that was one of the stories, the kid who got cured of his cancer, was good for a couple of years and then got luekemia as a result of his chemo for the earlier cancer. That kid died a horrible death as they tried to treat that secondary cancer. Right in front of us. On camera. He suffered. I only really just discovered that might be my secondary cancer too, one of the chemo drugs they gave me is the agent for that. Depending on dose, depending on if you also get radiation. It can happen as soon as 2 years and up to 10 years after the chemo. This was all basically new information to me. And of course I put it in the context of that poor kid dying on tv. And I put it out of my mind during the day. 

    And I woke up with a headache in the night. I never get headaches. Rarely. When I couldn't get back to sleep. I kept thinking about that whole oddity of me having one Baby Doctor through the AC, then that weirdness over me and the AC that started happening, the questions I had about the dose and I was supposed to just see Dr P for a couple of times, but I never did go back to Baby Doctor.  I got up in the middle of the night and looked up my dose in my little oncology passport. How much of that did they give me? 1067mg. Every 28 days for 4 cycles. I took the full amount. I looked it up on the internet, dosage for these chemo drugs. The standard dose for that one is 600mg, I found that information in 5 or 6 different places, that exact number. I had almost twice as much. And I will have radiation too. Now I am back to feeling like someone with stage 3 cancer, and less like some one who's cancer is "undetectable" now. And now that Luekemia story feels much more real, and much closer. So I looked up that cancer. Only 25% survive for 5 years. 75% do not. And of adults who get it, older people like me, people who have it as a result of earlier chemotherapy, most do not even make it through treatment, they die of the treatment before they get a chance to die of the cancer. And even if they make it through treatment they die within the year anyway. Without treatment the average life expectancy is 2.4 months. Wow. That could happen to me in 2 years. Or anytime up to 10 years from now. Now I know why Dr. B seemed so pissed when he finally looked at me and it seemed like the AC was not working. He threatend to just go straight to surgery if the taxol did not show good signs of being effective right away. I get it now. It all clicked into place. Wow. What a nightmare. Only I was awake. 

    I got terrible heart burn sitting there at my desk looking at my computer I got heartburn. But is it heart burn? Maybe this thing I've been calling heart burn is actually some kind of heart attack, because this is also the same drug that causes heart damage. It damages heart cells. Perhaps those two terrible episodes of heartburn weren't heartburn after all? Perhaps my fear of dying of a heart attack after my second chemo was not so misplaced after all. And if so then perhaps taking those heartburn pills that cause stomach cancer was even more stupid than I thought at the time. At least I stepped in and saved myself from that. I just stopped taking those pills on my own. I took that risk and I was fine. 

    I was awake and discoverying this all my myself in the middle of the night. I was awake and getting heartburn, or was it a heart attack? This is why you should never look up health stuff on the internet, even if you are looking at documents that are chemotherapy protocol pdfs written for doctors and journal abstracts rather than some quack trying to sell you his/her bogus cures. You still have no context for the information you find there. I don't even know how up to date it was. However, and yet - I did decide, right then and there that if I do get the Luekemia as a result of the AC treatment, then I will not have further treatment. Those odds are not worth it. I will just die in my 2.4 months. Now that I've done 6 months of hard chemo 2.4 months of dying of luekemia does not seem so bad. It won't be so hard on me or my family if it can happen in that short of a time. It's the long, drawn out suffering that is so hard on everybody. Only if there were a really promising trial at that time would I take it on as a contribution to science. Only then. So. Once I discovered, and decided that, all alone in the middle of the night, standing there, drinking a cup of water and remaining vertical as a way to manage heartburn, I started to feel better. Once I made that decision I felt better. If that happens, and I guess that is the worst that can happen as far as I am concerned, I will reject that treatment and just go straight into palliative, hospice care. It will be too soon. And it will be too bad. But it doesn't have to be out of control suffering. 

    I went to back to bed then. I was able to go to sleep. I slept in. I slept in all the way until 8 am this morning. My husband was worried. I never sleep that late. He can't remember the last time I slept for so long.

    So this is where I am at. I thought I would be all happy and coming back to health. But I'm not. I'm not ready for that yet. I'm still dealing with the fall out from the chemo. And in a way I'm in fact just starting to deal with it. Just the chemo part, not even the whole treatment plan. I'm just starting to wrap my head around what the chemo part of this treatment means as I go forward. Being here, mentally is not at all what I expected. And even physically, I thought I would be feeling better by now. There has been too much damage. This isn't like getting over a bad flu or cold. You don't come back to health so easily. It's not a day or two of being pleasantly weak and a bit exhausted, and then you are fine. It's not like that at all. 

    It's more like coming home from a funeral and knowing that it's not the end of your grief, it's actually the beginning of learning how to live with this grief for the rest of your life. That is a better comparison. That's what the end of chemo actually feels like. This is the beginning of learning how to live with the effects of chemo for the rest of my life. And I'm not done treatment yet. I think this was probably the hardest part. I don't think I shall have to go through anything that hard again. And now I have the choice to say no if it comes up. And I know that mostly I will say no. So it doesn't hang over my head in the same way that it instinctively did up until my middle of the night discoveries last night. And yes, these smaller side effects that may continue for months or years now, do seem smaller in light of what could happen, of what could still happen as a result of what was initiated during those chemo sessions. Perhaps I was not so far off thinking of lethal injections as they did that to me. Perhaps those injections were lethal and we just don't know it yet. 

    But I do feel better for facing it, and deciding. I feel better this morning than I did yesterday morning. I feel better as I write this and feel those little bugs crawling around on my face and in my eye brows. I've got a plain old fashioned zit growing on my nose. My body is coming back, it's starting to fight back against bacteria again. Zits. Of course that would be the first sign that I'm actually recovering from chemo. 

    Life, life, life. You are such a practical joker. Sometimes I think that I could believe in a god that is not an angry, judgemental old man, I could believe in a teenager god pulling practical jokes and pranking us, that is what life is really like.  I suspect that if there is a god it is merely a teenager playing practical jokes. Or perhaps it's a ten year old boy. A ten year old boy blowing things up and having a good time without really knowing what he is doing. Could be that. I could be convinced to believe in a god like that. 

    And I say that from the perspective of someone who's just been smite, smited, smote? Punished by god for the sins of eating fat or meat or just generally putting the wrong food into my "pie hole". I don't feel guilty in front of that pissed off punishing god. I do not believe in that type of pissed-off punishing god, even if he appears in the modern non-church version as the judgemental, avenging food police. I say that as someone who considers the polluted air we breathe, the toxins in the water we drink and in the soil that grows our food. And the people who profit from these environmental disasters. Perhaps there are a group of powerful, judgemental, angry 'gods' out there - but they are not the good guy. 

    Right now it's almost 11am. I'm still not dressed. I am way off schedule. But I feel good. My body can take it finally. That is a good sign too. In the middle of chemo I would not have been able to sit this long without eating, drinking, napping, moving around. I was like a baby that way, or a toddler. It feels better to start living like an adult again. Who knew that being adult mostly means having longer periods of time where you can do things. That you can simply sit and work for longer. That you can be up and exercising for longer periods, and more intensely too. That you can eat more at once and then go for longer between meals. Who knew what an important stage of maturity it is when you can do those things. These are the things that allow you to be. You need to be strong enough for them, but then you can do way more with your life. You have that time and energy. I'm getting it back. Even as I am having to adjust to all the changes, I'm also getting my basic strength back again. 

    My husband has gone to drive Henry See to his treatments. Chemo and raditiaon together. It does not matter if he will get a secondary cancer from that deadly combination. He is dying from this cancer. His cancer doubles in size every three weeks if left alone. They are just trying to make it so that he can function for longer, as he dies. That is what is happening with my husband's old friend. My husband will see something completely different with him methinks. It won't be the same kind of experience. I am curious to hear from him when he gets back. The last time we saw Henry he knew he had something in his brain, that it might be cancer but they didn't know for sure, he didn't let them do a biopsy, and he was thinking that he might just try some cannibas oil. He was healthy but scared. He had no symptoms except for passing out that one time, and he didn't feel anything over that, didn't remember it either. One minute he was being interviewed by a reporter in Starbucks, and the next minute he was in a hospital bed with all of his ex's sitting on the bed. That was the last time we saw Henry See. I was bald but still in the early cycles of my own chemo. We had a bit of an empathy moment together. Since then he's had two brain surgeries. Since then he lost a lot of function as the tumour grew between surgeries and has got some back as a result of the second surgery and now the chemo and radiation treatments. But he doesn't have a good prognosis. He's moved right ahead to the dying process. I think. My husband will know more when he gets back, after he's talked to Henry in person. 

    My brother and I did not have this kind of cancer, we have the slow growing cancer. Our cancers move in slow motion. If we manage it correctly it may even happen that we die of something else before our cancers slowly move to that final stage. I understand this kind of cancer a bit. I understand the idea of living with it. Mom died of malignant melanoma, at the end after all that slow moving stuff she did finally have a die within two months cancer, no treatment for her, just comfort care. It was in the days before they got their act together with hospice care, so she was in a hospital, but the only treatment she got was drugs to ease the pain, comfort care. It was okay. At the end it was okay. She suffered, but not that much. She did not suffer dying as much as she had suffered living with cancer. 

    So here I am today. It's Tuesday. I slept in. I did not have to get up and get a blood test. I did not have to sit around the waiting room for two or three hours waiting for a five or ten minute doctor appointment. I had a mid-night, not mid-life, crisis instead, and then I slept in. And then I got up and started writing in my pjs. And I feel good to be out of that old tight schedule. 

    It feels really good to have gone through that midnight emotional wringer of what now, what next, and come out the other end again. Okay. Not great. It's not the greatest what now, what next. But it feels real. It doesn't feel like the happy glossed over version that I've been projecting. It feels real. And it feels okay. Not the best. But better because it's real. I'm okay with that. I think I can deal with that.  

    Maybe my brain is okay after all. I feel more like me. This is the kind of thing that I would do, this is the way that I would handle it. I kind of love myself. I feel like an old friend has returned. I might not be so perfect, but I'm the only me that I've got. It's good to have me back again. I am smiling as I write this. Whew. That was a big step I took yesterday and last night. Mentally it was huge. Freaking myself out and dealing with it. 

    I don't care that I didn't do laundry this morning. I was planning to do sheets and towels instead of going to the hospital. Oh well. I didn't plan to sleep in and then stay in my pjs writing all morning. But that sort've behaviour is better when it's unplanned. I'm having a play hookey morning. And I'm strong enough to play hookey like this, celebrating that too. But look, it's after 11am, I'm getting hungry, I think I shall get up and have some breakfast, whatever I feel like. And a nice warm bubble bath too. Get dressed, and then who knows. I have the apartment to myself and nothing that I really have to do. I deserve a day like this, I earned a day like this. And I can say that even if i don't believe in a punishing god that also hands out these kinds of earned rewards. I don't have to be rational about that god stuff. None of that is rational in the first place.

    Heck, I might even look at today's todo list after I have breakfast and get dressed. I can do that too if I want. There are phone calls to make on that list that I'll feel better for making. But I could do them tomorrow just as easily too. 

    Dispatched April 9

  • 8 Apr 2019 6:23 AM | Contact Me (Administrator)

    What does all this mean as I decide what to do next, when to retire, how to retire, whether to keep working or not, whether to travel, how to spend the money that I have, how to spend the time I have, how to prepare myself for this restructured future. 

    Monday morning. Still getting up in the early hours to write, still doing stuff for scriptwork, still doing housework, still reading cookbooks even if I'm not cooking anymore. And still, maybe even fantatically running a schedule and a to-do list, every single day. So you can say I never get a day off, or every day is a holiday. The only thing that makes it a work day or not is my husband's schedule and how much he's working downstairs. That makes it a work day. And today everybody is coming in to work. They're going to have another screening on Wednesday I forgot to write that in my daytimer. Another screening on Wednesday. A screening instead of chemo. Wednesday will not be a free day after all. 

    But today and tomorrow are free days, and I'm feeling better. I'm feeling pretty good. I even think my nose bleed might be stopping, maybe stopped in my left nostril and slowing down in my right nostril. That is encouraging. I will feel less like a chronically ill and dying old person when my nose stops bleeding. Perhaps the recovery will be like winding back the clock. I look at my cousin's beautiful profile picture with her bald head, eyebrows, smooth skin, only slightly puffy face and think those were the good old days. I would be really, really happy if I could be transported to back then. I even used to be able to walk all the way to the store with my husband. Not any more.  I felt like I was deeply into the chemo experience back then. I never felt like it couldn't get worse, I was always afraid of it getting worse. And my cousin has been through the worst that I was afraid, even paranoid of. You can see it in her eyes. You can see it in her 'bring it on' attitude. We are related. You can tell just by looking at us. Our eyes. And it did get worse, but not in the ways that I was afraid of. I look back on those as the good old days. And if they give my cousin three cycles and it's the same stuff at the same dose then they will be stopping just short of the really bad one. She won't have to go through that. Good. I'm glad. I wouldn't want anyone to have to go through that. And especially a beautiful young woman with a new job and a young family. She will probably even be able to work most of the way through it too. Or parttime for a while anyways. 

    Today will feel like a work day around here. Both the editors and the director are coming in to work today. I expect the production manager will be there too. I'll do my Monday laundry today. 

    E & V are both posting pictures from Little Cayman, both posting pictures from the resort and their pictures let me feel like I'm there with them. I love it. I accept that feeling and go with it. Coffee in the morning with everybody, the wharf, the dive boats, tropical light. Warm ocean salt-water scent. Later in the day it's happy hour and hanging around relaxing with your dive buddies comparing dive stories and then early to bed. I felt like I was in happy hour with them after I saw the shots of the resort's swimming and soaking pools. Those images put me right there. And at around 4 pm I imagined that everyone would be going for a drink and felt how nice it would be just hanging out with them. Reliving the day, and telling the stories of other days and other dives. Buddies. E had breast cancer and we've been sharing our experiences. I am part of a chain, E ahead to tell me what's ahead, D coming up behind and me to tell her what's ahead. And this is just my own little life with people that I already knew. V with her blood that shows so many pre-cancer changes she can't give blood anymore. She can't make her yearly donation of blood. So that was something to think about too. Cancer. It's every where, and it's in us all. All you have to do is live long enough. The potential is there. 

    Yesterday I felt pretty good all day. I did go downstairs and scan in the pictures and recipes that I'd already set aside for the family cookbook. It took longer than I thought, and was a good warning to be more cautious about which pictures and recipes to choose. Be a bit picky. It took me a while to figure out how to set up the scanner for what I wanted, but that time was well spent because it saved me a ton of time cropping and renaming files later. I worked pretty steadily from around 11 am to 2 pm. forgetting all about cancer and just doing my thing with the scanner and the pictures. Then it did hit me a bit. 

    I had to stop and get something to drink, that was the first thing. I still need to have all those fluids going through me, and something to eat too. And get up and walk around a bit, get the circulation going. 3 hours is as long as I can go without all that. So I stopped. Took a break and had a cup of diluted gingerale, soda water, a small yoghurt with fruit, and my walk around the block. It was a quieter day on the streets, and also colder. It was only around 0 yesterday and there was a cold north wind. I wore my big parka. And I needed it too. At only 0 degrees. Where is the woman who used to save it until it got to be at least 20 below because after that there was no bigger coat to wear when it was -30, -40 -or -50 Now chemo lady is wearing it, and needing it at 0 with a wind. But it doesn't often get to -30 or -40 here either. And if it did I wouldn't go outside. 

    I hung out with my husband for a bit. He was having a Sunday afternoon of treating himself to his new Jack Reacher novel. He's been saving it for a trip. He's been saving it to read on the airplane. He would've been reading it now if we'd gone on that trip to the Little Caymans. That's what he was saving it for. So he started it yesterday. That's how he spent Sunday afternoon, on the couch reading his Jack Reacher novel. Both of us are having a bit of an alternate life in Little Cayman with the rest of our dive buddies right now. Being in sync with that alternate life. We've been there before. We were all set to be there now. And then cancer hit. And we will probably be there again. Sometime in the future. My husband is not resentful. I did not get the feeling that he's resentful that we're not off in Little Cayman diving with our buddies. He could've gone without me. I encouraged him to go. I could've had a week with my brother and sister. I would've arranged for them to come up for this week and we could've have a good siblings holiday of our own while he was gone. Or if we didn't manage that, this could've been my week with my son. And I would've enjoyed that too. 

    My husband refused. He did not want to go without me. And so we are here together. And he's not resentful. I also thought about trying to go anyway, even if I knew I wouldn't be able to dive, I knew that it would be between chemo and surgery and that I would probably be able to manage a week off of medical appointments and be able to spend it sitting around a resort recovering by the ocean instead of being here at home. And I know it's okay to sit around a resort and recover. We did that on the infamous Bonaire trip. But that's a lot of money to spend. My husband would've had a good time, he could've been off diving with the gang. All these alternate lives. 

    I physically could not manage the trip there and back right now. I did not imagine I would get this weak. I do not have the stamina. I can't even sit for more than three hours scanning documents downstairs. There is no way I could've managed the plane ride, or the lineups through security and customs. I couldn't sit that long at a time strapped into an airplane seat, and I couldn't stand that long either. And while it would've been nice simply to be there in the Caribbean I'm not able to get there and back, as this sick person. And I didn't know how I would look either, that I would look like the invalid too. I didn't even think of that. I imagined it would be like me, the old me being there and just not able to dive, all the rest being the same, and that would be okay. But it's not me. It's not the old me, and I'm more wrecked by this chemo than I thought I would be. I'm glad I didn't try to go.  

    Monday morning. Not in Little Caymon on a scuba trip with our buddies and my son's family too. Not at the ranch enjoying a spectacular prairie sunrise. Monday morning here in in this apartment with my husband, enjoying the smug feeling after my great clean up job on Saturday, feeling good when I go into the kitchen and bathroom, and even when I look at my desk all cleared off here in the office, ready for a new project. Feeling pretty good this morning. My Monday good health day; "as good as can be expected" as my mother would put it, which is far better than her "not too bad" response to how are you, which I now know was prairie stoic talk for actually pretty darn bad. 

    I can't believe she went through all that and never talked about it, not to anybody. She just suffered silently and then when she was strong enough, recovered enough she just proceeded to pretend it had never happened, was not still happening. I was 8 when it started, her first cancer. I was 32 when she died. Yes, I almost said finally. 24 years. She lived like that for 24 years. Unbelievable. No wonder she had food issues. No wonder that she went through that drinking phase. And maybe even no wonder that my Dad killed himself because it was just too much. 

    We learned some thing from her mistakes. My brother next in line. My brother talked about it, he shared out his experience. He joked about it. I would say my brother joked about it more than talked about it. But that's better. It's healthier that way. It does open it up. And it does allow for moments like me and my brother sitting there together looking at his CT scan, looking at how they've mutilated his guts. 2/3rds of his lung gone. I don't know how many feet of his colon gone, and his colon reshaped into a Y shape instead of one long winding coil. I appreciate my brother's colon more now that I know how D's brother died from his colon cancer. He died of starvation after the surgery.  

    And now it's my turn. I'm in between. I'm talking, but I'm more positive than the real truth. I talk on my good days. And I'm positive. But I'm really talking the trash parts here in the journal. That's a long way from my mom and her silence. She would've been horrified by my cancer openness. But I think I'm right and she was wrong. And this is not the first time that I've thought I was right and she was wrong. That pretty much defined our relationship even past the teenage years, even though we were so much alike. We were also so very different. It is almost like I built myself into her opposite image. Two sides of the very same coin. Black and white. Silent and spilling your guts. 

    Realistically, dropping the optimist front that I'm putting on for everybody else, this is what is going on with me:

    I was diagnosed with stage 3 breast cancer. 74% survival rate. So more than 50/50 but not as good as people who get their cancer dectected smaller and before it starts to spread. I seem to be ahead of that particular percentage game in that my cancer responded well to the chemotherapy, and I'm at a really good hospital that specialises in breast cancer on top of that. But I know it also means that was in my lymph node even if it is gone now, and that they set a lot of blood loose when they did the biopsy back when it was at it's most active stage. So I have a fairly good chance of having a recurrance of this cancer in some other part of my body down the road probably within the next 1-3 years. 

    I am having a lympectory instead of a radical masectomy which means that I have an increased risk (30%) of having a recurrance of this cancer in the same breast, but if that happens the treatment will be a simple surgery to remove further tissue, or the rest of the breast entirely. I won't have to go through the whole chemotherapy process again. It also means that I have a decreased risk of developing lympedia (75% less likely) which is really important to me. Though much of that will depend on the results of the sentinel lymph node biopsy and how many other lymph nodes they'll have to remove. Even if they have to remove more I think that being able to move my arm normally sooner after the surgery will make a big difference. And the lympectomy means that they're putting me in a long term study which means that I'll be followed more closely for the rest of my life for any sign of recurrance. And I think that will be an important part of reducing my future risk. 

    The chemo therapy has done bad things to my body. The AC chemo I had causes an increased risk of developing luekemia over the next 10 years. This risk starts 2 years after treatment is highest between 5 & 10 years and then falls off after that. The taxol cause heart damage, damage to the heart cells. This damage continues over time. So having a heart test in the near future is not necessarily a predictor of the problem. I also have a 30% chance of never really getting over the chemo fatigue. 

    And the radiation part, damage arising from that is not even on my radar yet. Though we know that it increases the risk of both the luekemia, and fatigue. So. More of that, add more of that to the real outlook. 

    I still have the same increased risk of colon cancer that I had before all this started. (if not more due to chemicals and radiation)

    I still have the same increased risk of malignant melanomia that I had before all this started. (if not more due to chemicals and radiation)

    Having one cancer does not get you off the hook for any of the other ones. 

    So. What does this mean? What does all this mean as I decide what to do next, when to retire, how to retire, whether to keep working or not, whether to travel, how to spend the money that I have, how to spend the time I have, how to prepare myself for this restructured future. 

    I am 62 years old. I know I can live on my disabilty pension in this apartment with my husband. But I won't have my old lifestyle. I won't have money to travel. I won't have money for a lot of extras. But it is enough money to buy myself time. I could live here and have the time to enjoy my life, do writing projects just for the fun of it, and have to have my family come here to visit me. I would continue to have access to excellent medical care at little or no cost.

    This medical situation,my new cancer reality also means that I won't likely need long term care for a long time at any point in my future. There won't likely be years of life in the old folks home for me. I won't be old and frail and needing care for years and years. So that does not need to be a priority part of my retirement planning. 

    These are all the things I need to consider as I look at my future working life and how much I want to work. And how much I will be able to work and what is it worth  to me given that I will for sure have a more limited amount of purely healthy, non-medical time than I expected to have before this diagnosis. 

    How do I want to spend that time? What do I need to do to prepare myself for future medical problems? What do I need to do to prepare myself for a shortened life but without any more major medical problems? I need to decide on something that will work for both contingencies. But that will also feed my soul and simply work in the moment too. Something that keeps life feeling like it's worth living, no matter what. Things to think about. Thoughts that are best based on a realistic assessment of the situation. 

    Dispatched: April 8

  • 7 Apr 2019 5:50 AM | Contact Me (Administrator)

    For me it's not about the place. It's about the time. Every place in the world has a sunrise and a sunset, a full moon, and a dark moon. What I want now is just contemplative time, mixed with the occasional dash of family and old friends. A burst of babies and puppies, and then quiet again. I am jealous of the time that my husband had to himself in his younger years when he worked on his thesis. I am jealous of the time that my friend D had to herself in in her middle years when she worked on her thesis. I guess maybe I just want to work on a thesis. Ha, ha. 

    Sunday morning. Last night we watched two memoire movies, Wild and Rosewater. I should get the book for Wild and read it as a book. Just like I'm going to read Unbroken. And just like I read H is for Hawk. Memoire's are being re-invented. Memoire's are getting popular again. People are back to going on adventures and folks are fascinated by them. Inner adventures this time. At least for the women. But even Unbroken is an inner adventure.  

    I woke up thinking about "Wild". Through the whole journey it was not the hike that I envied, the way my husband did, it was not the physical trip. It was the time. I watched the days go by on the screen. 8 days, 36 days, 96 days. I have never in my life had 96 days to myself to do my own thing, that is what I envied. I envied the time. I want that. I want time. Just for me. Just to do my own thing. And she was a waitress. She wasn't rich. It wasn't expensive. Camping. But she was right in the movie when she said that most women can't just walk out of their lives. They have children to take care of. They have parents to take care of. 

    My parents are dead. My children are grown up. I just have my husband and he is healthy and well and fully able to take care of himself. I could walk out of my life for three months. Six months. I could go set up a tent someplace and just live there. I've been moving around a lot in my life. Moving and travelling. I don't feel like I have to be on the move anymore. I feel like I want to just sit. I feel like I want to go someplace in nature and just sit for three months. I could do it. Simply get a campsite and live there for the summer. I could do that. 

    For me it's not about the place. It's about the time. Every place has a sunrise and a sunset, a full moon, and a dark moon. Every place that's outside the city can have a sky full of stars. That's what I want, just contemplative time, mixed with the occassional dash of family and old friends. A burst of babies and puppies, and then quiet again. I was jealous of that long amount of time that the woman in Wild had to herself. I am jealous of the time that my husband had to himself when he worked on his thesis. I am jealous of the time that my friend D had to herself in when she worked on her thesis. I guess maybe I want to work on a thesis. 

    And I realized that none of this is about cancer. I woke up thinking about other things again. I woke up taking my body for granted and thinking of other things. I am coming back into being me. Even if I do none of these things, I am still coming back into being me, simply by not being defined by my body at the very same time as my body has been taken over by chemicals. I woke up feeling okay enough to be thinking of other things. I woke up feeling okay to be thinking about those two movies in the same way I would think of them if I didn't have cancer, if I wasn't in the middle of treatment for cancer. 

    This morning it wasn't all about managing symptoms, ignoring symptoms, living with symptoms, overcoming symptoms. This morning it was about memory, and time, and those times that you take in your life to train a hawk, or hike the pacfic coast trail. And while it is true that women generally cannot simply walk away from their lives the way that men can, they are also not as liable to have their lives taken over by outside forces the way that men are. Perhaps it is not just coincedence that both of the male memoirs were about being captives in war and politics. 

    I am coming back. I am coming back to me. 

    These chemicals are starting to let go of my body. I woke up today thinking about something completely different. Sexual politics and our relationship to nature. Nature. Already my thoughts are different, nature is the same, but since reading H is for Hawk my thoughts are different. Some of my basic ideas have been challenged. Nature is everywhere. You don't have to go anywhere to be in nature. It is all around us. You just have to see it and feel it. It's there. Here.

    Yesterday I did climb down from the tight ritual of my schedule - a bit. I did my daily walk long after lunch, and my nap. It was almost supper time when I finally went out for my walk. And I almost didn't go at all. 

    It is now 11 days since my last chemo. If this was the old AC routine where you could still determine the pattern this would be near the end of the worst week and the start of the good week. Sometime between Saturday and Monday would be the turn around day. So I should not be upset that I've actually been feeling worse since the last chemo. And I should not be surprised that I woke up feeling better this morning. I am passing the turn around point, it's only now that I'm passing the turn around point. And I should not be upset - because they told me this, "You will start feeling better two weeks after the last chemo." Two weeks is next Wednesday. We are not even there yet. But I've started to feel the turn around already. So that's good. And I should not have tried to feel better, or expected to feel better sooner. And for sure I should not have felt like some kind've failure because I didn't feel better, I felt worse after that last chemo. Of course I would feel worse first, and then better over time. Two weeks and then three weeks, three weeks is the begining of the recovered enough for surgery part of the schedule. At three weeks I really will start getting better. Promise.

    Dispatched: April 7 

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