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Cancer Daily Dispatches

A personal daily diary of successful cancer treatment.

Welcome to the story of my cancer journey

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

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

June 15, Saturday


  • 26 Apr 2019 6:49 AM | Contact Me (Administrator)

    You go forward, it becomes less of a looming catastrophe when you take a moment consider the afterward of your worst fear and then you realize that, yes you could survive that too. It wouldn't be the end of the world. 

    Friday morning. One week until the surgery. My sister comes to help out on Monday evening. We are heading towards surgery faster, each day that passes and the surgery looms closer in front of me. I had two children, I had my tubes tied, I broke my wrist. That is the extent of my previous ‘medical’ history. This is frightening, unfamiliar territory to me. 

    So today I will think about paperwork. I’ll look at finances, wonder why the disability insurance folks haven’t responded, and figure out what bills I can pay, which can wait and what I will need to live on in the next few weeks, and what I will need to buy ahead of the surgery and this next phase of my treatment? New masectomy bras? Shirts that button up the front? Probably the shirts I don’t have any and I don’t think I’ll be able to pull a t-shirt over my head for a few days after the surgery. 

    My sister is coming, I should do some laundry today. Wash the sheets and towels for the guest room. That’ll be another good distraction. I can carry a whole load of sheets and towels back and forth to the laundromat, no problem now. I don’t know when I’ll be able to do that again after Friday. It depends on how it goes during the surgery. 

    It’s not as bad as it used to be. My mother went in for a biopsy, not even knowing if she had cancer or not, and she woke up with no breast, no chest muscles and no lymph nodes. I’m going in for a day surgery. It will be a lumpectomy with a flap reconstruction using existing breast tissue from the same breast. There is still a question of how many lymph nodes, if any will need to be removed. We won’t know that until I’m cut open and they send a dye to travel from the tumour to the lymph nodes an see where it goes. I have a skilled surgeon, I guess the lymph nodes in your armpit are like a bunch of grapes. Some surgeons can only take out the whole bunch at once, but my surgereon is good at only removing the lymph nodes that show signs of cancer. One at a time without damaging the neighbouring lymph nodes. And they test them, they wait until the report comes back, cancer or no cancer in each lymph node. That is something they will learn during the actual surgery, how many lymph nodes. That will say something about how agressive this cancer might be even if it’s not big enough to be dectected manually anymore. 

    We’ll know that right away. Before I wake up. It may affect the way the rest of the surgery goes too. They will make decisions on the spot. I will be unconscious. I trust this surgeon completely. I am not worried about what he might do while I’m out cold and can’t argue or complain. 

    Lesson three in the mind and memory program builds on the first two lessons. The quick relaxations start to turn into momentary checks for muscle tension, shoulders up? Relax them. Mouth tight? Smile and relax those muscles. Continue to get out of the habit of carrying tension in your muscles, relax your body so your mind can work better. Come up with more interesting ways to talk to yourself when you want to remember specific new things like names, addresses and times. Repetition and rhymes in the self-talk process work well. They talk about the three Rs. Relax. Rehearse. Repeat. 

    The interesting new idea was something they called, “Cognitive Restructuring” or challenging unhelpful thoughts, beliefs or assumptions. Maladaptive thinking. They say that the first thing to understand is that all human emotion comes from our rapid, micro-second thoughts or perceptions. The trick seems to be to get in front of those micro-second thoughts, or second guess them with more realistic thoughts. 

    Go look - gather more information. That is what cognitive restructuring is. Truly examining thoughts or assumptions to come to the most accurate conclusion so that we arrive at the most appropriate or adaptive emotion. Notice we don’t say “right or wrong emotion”  All emotions serve an important survival and adaptive function - what we need for the circumstances is the most important thing. 

    I didn’t think that I had that many baseless anxieties, that many ‘maladaptive thoughts’ or out of perspective ideas. But I was surprised when I started listening to my ‘talk to myself’ habits that I said, “ya, but…’ to myself quite a bit. A better approach is ya, so? For example, they might have to remove all of my lymph nodes during during surgery. So? 

    What happens then? Will I die from that that? No, probably not. Will I necessarily get lymphedema? Maybe, maybe not. Or will just have to be a bit more careful? Yes, I would have to be more careful. Could I do that? Yes, I could do that. And even if the worst happens, they have better treatments to manage lymphedema these days compared to my mother’s time. And in the end she lived with it, and she had a good life that she wanted to live. She laughed, she cried, she carried on. So would I. So, my worst nightmare is not necessarily so bad as all that, and the odds are it won’t happen. So. Chill. 

    Life goes on. 

    And you go forward, it becomes less of a looming catastrophe when you take a moment consider the afterward of your worst fears and you realize that you could survive that too. 

    Dispatched: April 26

  • 25 Apr 2019 7:43 AM | Contact Me (Administrator)

    “You can’t eat food that friends bring because you have no idea how it was handled and prepared.” Here is where I think sometimes the dieticians and doctors get too disconnected from real people’s lives. I can see the eyes go around the room, the women’s eyes are saying, can you believe this? And so in fact we are starting to bond as a group. Eye contact, a shared disbelief in our speaker. We have something in common. Downward glances, quiet smiles. I find that I’m starting to like being part of this cancer group after all. I do feel less alone. 

    Thursday morning. It’s the day after a busy day, it’s going to be a nice day today and I’m treating myself to a walk on the mountain. A bit of time to just walk and reflect, enjoy the first scents of green and ground. I’m lucky to have this bit of nature refuge in the middle of this big, old city. Thank you Mr. Olmstead for having the foresight to create this park in a conjested 1900s neighbourhood where no one really ever had any outdoor yard space. I just have my little balcony, that’s it. And my situation is typical of the buildings in this area. Thank goodness for that great big park pratically right next door. And thank goodness for finally being strong enough to walk as far as the park, for the good weather and finally, finally being able to get outside and enjoy a bit of nature.  It’s always a big treat at this time of year anyway. But this year, after the super cabin fever winter it is an extra big treat. 

    Yesterday I got to see the lymphedemia lady. The situation was informal, she met me at reception and then she led us on a tour of the back rooms. She had to find an empty examination room because she didn’t have one specifically assigned to her. She was young. She was really nice. She had all her equipment in her pocket. She was glad that I talked my doctors into giving me that appointment. We settled in and made that temporary room our own. We talked. She took measurements of both my arms as a baseline. She listened to my concerns, she talked about my surgery and the after effects of surgery. She understood my fears. She showed me some exercises to do almost as soon as I got home from the hospital. She gave me a printed sheet with the exercises. Usually a nurse or someone will come to check up on me in the next day or two after the surgery and they will go over the exercises again then. She was charming, talking about ‘her ladies’. That’s us. Us women, mostly older women with breast cancer, the women at risk, or with lymphedemia. I know how important this kind of care and attention is, I’ve seen what happened to my mother and how it hurt her life after cancer when she couldn’t ever lift her arm as high as her shoulder, when that arm puffed up to the size of a leg, and she used to have to hold it, cradled it with her other arm. Heavy. It was like that the whole rest of her life. It was sad to see. She was a vain woman, very conscious of her appearance and that arm stole a lot of fire from her too, as well as the simple physical disability. I feel better about my chances of avoiding lymphedemia. Mainly because the surgery is going to be quite different. We talked about my surgery. Besides the doctors she is the only one who really gets it, why I am going for the lesser surgery. Honestly I don’t think the treatment or the understanding of lymphedemia has improved all that much since my mother’s day. But my surgery will be far less. It will cause less disruption to the lymph system on that side of my body, and so both the specialist and I think that I have a better chance. But lympedemia is a bit like cancer itself in that they just don’t know. It can also start up at any time after the treatment, even years later, even seventeen years later that arm could suddenly develop lymphedemia, and that will be it. I will be dealing with it for the rest of my life after that just like my mother did. Uncertainty. That is the principle at play here. Going forward. But I feel better, I feel better because of what the young woman told me, and I feel better because she is there, expert, paying attention, concerned about ‘her ladies’ and lymphedema  in a way that the doctors and nurses are not. 

    Nothing is happening on the insurance front. Just silence since I sent in the last set of papers, finally. So that is on my to do list for today. Call the insurance people. Email the insurance people. Get on their case, find out what is happening. I was diagnosed in October. Here it is almost May already. I know that it’s partly my fault, I was so sick and it just took me a long time to bug them enough to get the right papers, and then bug the doctors enough to sign the papers, and then to find out where to send them so that they would land on someone’s desk who might react. And now I have to bug them to make sure the papers did finally land on the right desk. Phone calls, emails that’s my work from now until someone responds either by saying they are working on it, or that the papers have gone to the wrong desk and I need to send them someplace else. Or they are the wrong form, I did the 32b instead of 32a form. Sigh. I really hate this part of having cancer. It’s a lot of extra bureaucracy in your life. 

    Yesterday was the breast cancer group’s second session. This one had a focus and guest speaker. This time we weren’t invited to tell our cancer story. Bits of more interesting parts of our lives came out of the general discussion around diet though. The dietician talked about diet for cancer treatment, she especially talked about food safety. How to avoid getting bacterial poisoning when you have a compromised immune system. Which cheeses are safe, which ones you should avoid until after treatment. Watermelon. She said that most of the food poisoning in the United States comes from watermelon. The bacteria moves in from the knife and air, and travels deep into the watermelon itself. Watermelon is often left outside sitting in the sun. People eat it raw. It’s a recipe for food poisoning. Hardly anybody ever gets food poisoning from the mayoniasse anymore. It’s commercially prepared, people are careful about leaving food prepared with mayonaisse out at room temperature. And so the danger is not where you thought it would be. It’s in the fresh raw fruits and vegetables. Precut are the worst. Sprouts are the worst. Think about the snot nosed kids who work in grocery stores, the ones who get the lowly job of cutting the fruit and vegetables for the pre-cut sections. Think about how often those teenage boys probably really, thoroughly wash their hands ater they leave the bathroom and before they start cutting the watermelon. You don’t need to live in the south, you can eat watermelon here in Canada and get sick from it. Don’t buy cut watermelon if you are being treated for cancer. 

    When you have cancer the question of diet is not so much about what’s more healthy as it is about what won’t make you sicker, what won’t kill you. She talked about food safety at home while you are preparing your food. Guess another source of possible food poisoning? Your cereal box. It rides the conveyor belt at the check out, the same conveyor belt that just had raw chicken on it, maybe the package leaked a bit, those bacteria get onto the bottom of your cereal box, and then you put the box down on your counter at home when you’re unpacking your groceries and boom - your home counter has bacteria that can make you sick if you make your sandwich on it. And never, ever wash raw chicken under a faucet, that just sprays the bacteria into the air and all over your kitchen. She is telling us all this because most women still keep on doing all of the grocery shopping and cooking even if they are sick with cancer treatments, even if they have a leave of absence from their work places, no one gives them a leave of absence from their housework. She asks for a show of hands. How many of you still do the grocery shopping and cooking. Only two of us do not put up our hands. My husband cooks all the family meals. I mostly just make toast and snacks for myself. Once in a while a meal if I feel up to it. It’s not all on me. But for most women, women with young families, they were still responsible for the groceries and the cooking. The dietician looked disgusted with us as a group. It was a feminist disgust. Someone should be cooking for you. I shouldn’t have to be telling you all of this. You are sick, you are the ones with the compromised immune systems. But you are still doing the cooking, it’s your responsibility. And so I will keep telling you about food safety. You are the ones who need to know it because you are the ones who are  still handling the food. 

    I got the food safety lecture from the dietician in the chemo room way back at the start of my treatment. But I can tell that a lot of this information is a big surprise to the women in the room who are just at the beginning of treatment. And I think some of them are actually quite distressed to learn that they won’t be able to rely on take out food either on the days when they aren’t up to cooking themselves. And you can’t eat food that friends bring because you have no idea how it was handled and prepared. Here is where I think that sometimes the dieticians and doctors get too disconnected from real people and their lives and what can work on in practical terms. I can see the eyes go around the room, the women’s eyes are saying, can you believe this? And so in fact we are starting to bond as a group. Eye contact, a shared disbelief in our speaker. We have something in common. Downward glances, quiet smiles. 

    I find that in fact I’m starting to like being part of this cancer group after all. I do feel less alone. 

    Dispatched: April 25

  • 24 Apr 2019 8:07 AM | Contact Me (Administrator)

    I would never have discovered all these great mind and body techniques if I had not gone through all that chemotherapy. If I didn’t have chemo brain and ask for help I would not have found out about all these very cool practices - and just in time for my old age stage too!  

    Wednesday morning. Dawn of a busy day for me. Two appointments and two trips out into the wider medical world today. An appointment with the lymphedemia specialist this morning, and then the cancer support group meeting this evening. The featured guest will be a dietician and I’m looking forward to that even if I’m still a bit nervous about the whole group support thing. 

    Today’s lesson in mind and memory adaption was all about body relaxation and mind control the way you talk to yourself in your mind. 

    In principle the body relaxation was a lot like the yoga relaxation exercises I’ve been doing all along. And also pretty much the same as the relaxation exercises that I learned in acting classes so you can relax before you go on stage. You mentally scan your body for tension points note them, and then you then systemically go through your body from one end to the other focusing your attention on one body part after another, tense and release, relaxing that part as you go. The cool new thing that I learned from this lesson was “quick relaxation”. Instead of waiting for an official time to relax you can practice and do quick relaxation “bursts” lots of times during the day. You don’t have to stop what you are doing, go to a special place, wear a special exercise costume or put on special relaxing music. You can do it sitting at your desk, sitting in the waiting room, riding the bus, watching tv. The idea is to do these short bursts of body relaxation dozens of times a day all day long. By doing multiple quick relaxations, by consciously doing this over and over again, just these little mini-relaxations - it reminds your body to stay relaxed virtually all the time.  You’re not going for a sleepy deep relaxation with these quick relaxations, you are going for a sustained mental state that is calm but alert and focused. That mental state that you create through a simple repeated body exercise helps keep you physically relaxed and that in turn helps you pay attention and remember. 

    The mind control, ‘self-instructional training’ they called it, also reminded me of acting classes. We learned about something called ‘holding the moment’ in acting class. The teachers took simple things like brushing your teeth and had you break it down into all the smallest steps that are involved in brushing your teeth. Anybody who has ever watched some of the old comediens like Charlie Chaplin knows how much story can be mined out of simply paying attention to those step by step details of daily life. The idea behind the self-instructional training followed the same principle. You take a simple daily activity and break it down into it’s component steps just like Charlie Chaplin or Buster Keating would do. And you talk yourself through the steps. Out loud. If you miss a step you just pick up where you left off. Then you repeat the task, only this time you whisper to yourself. Then you repeat the task again, but on the last pass you are silently thinking through each step. The object of this exercise is not to make you the most perfect tooth brusher, or the best at boiling a potato. It is for you to train your brain to stay focused on the task at hand instead of flying off in all directions. It’s a way to train your mind to pay attention to what is in front of you and what you are doing in the moment. Self talk. “Self-instructional training”.

    Together, creating a habit of physically being relaxed and alert all day long and also staying mentally focused on the task in front of you, paying attention to what you are doing, both those things improve your memory. How? They let you lay down memories. You simply can’t remember something the next day if you were stressed and not paying attention in the first place. 

    Be physically more relaxed. Mentally simply talk to yourself through the task at hand, pay attention in that way, and there is a better chance that you will remember what you did today - tomorrow. 

    This makes so much sense to me. And I don’t think you need to have chemo brain to benefit from these techniques. Why doesn’t everybody know this? Why don’t we teach this in all the schools? This knowledge is just not out there in our world. This is the first time that I’ve felt lucky about these cancer treatments. I would never have discovered all these great mind and body techniques if I had not gone through all that chemotherapy. If I didn’t have chemo brain I would not have found out about all these very cool techniques - and just in time for my old age stage too! Memory was probably going to be an issue one way or another, sooner or later in any case. 

    And this is only lesson number two. I’m quite excited about this course. 

    Now I just have to remember all those questions I have for the lymphedemia specialist this morning, and the dietician tonight. And remind myself to get the medical form signed for the Wellness Centre so I can start participating in some of the physical activities. Whew. That’s a lot to remember. 

    Dispatched: April 24

  • 23 Apr 2019 6:18 AM | Contact Me (Administrator)

    This is the thing that I was most afraid of all along. Next to dying. Chemo brain. Cognitive Impairment. But not only is chemo brain generally accepted by the researchers and doctors nowadays, they have also developed techniques to help you understand it and deal with it. Okay. 

    Tuesday morning, begining of a bright sunny day. There has been a big change in the way I spend my time now. Yesterday I got into the Memory and Adpation Training Program for people who have been through chemo. It’s a workbook and in person meetings. I applied because I’m having trouble with words. I mix up odd word combinations now, and I don’t see my mistakes. I just don’t seem them. And they are not the usual mistakes that spell checker or autocorrect could find for me. There. Their. They’re. Those are usual mistakes. In my case it’s things like “own” instead of “one”. And if I get a lot of different mistakes in the same paragraph then it turns into a problem. This seems like a small disability, these odd word swaps that I keep noticing in my writing. But this is my job, it’s how I make my living. Writing. Words. For me it is actually a big deal. And quite frightening. 

    I thought I would have to convince Dr. B to sign off on my stupidity - er, cognitive impairment. But he bought into it right away when I explained about the word swaps. I’m not sure I was completely thrilled about that. Normally you’d like people to stall a bit if you tell them you don’t think your brain is running on all cylinders. He had a resident with him who got really excited, saying that chemo brain is now recognized as a real thing, it’s been proven. Chemo brain is real. I still forget that the information I get from the internet is usually much older than the latest information that I can get from the doctors and residents at this teaching and research hosptial. In this hospital the questions about whether chemo brain is real or not have all be resolved. It’s real. And I probably do have it. 

    How much? And what can I do about it? 

    Those are the questions. 

    This is the thing that I was most afraid of all along. Next to dying. Chemo brain. Cognitive Impairment. 

    But not only is chemo brain generally accepted by the researchers and doctors nowadays, they have also developed techniques to help you understand it and deal with it. There is a lot that we still don’t know about the brain, and about how different people are affected by chemo, but we know some things, and there are practical techniques you can use to overcome memory and attention problems caused by undergoing cancer treatments. And to me the big revelation was that attention and memory are closely related. Which makes sense, you don’t remember things if you aren’t paying attention to them in the first place. And stress, that flight, fight, or freeze response short circuits the way your brain functions and you don’t remember what was happening when you are stressed out. You can’t bring back a memory if your brain didn’t put it there in the first place. 

    I’m thinking about what that means, all those hyper steroid days. Jacked up like that chemically. How does that affect the way I remember? How long do those hormone drugs take to leave your system? I wanted to ask my doctor, “After six months of taking steroids when I will I be cleared to participate, drug free, in the olympics?” 

    And while I’d heard a lot about fight or flight, I didn’t know that there were actually three reactions. Fight. Flight. Freeze. And I feel like we should all know that. It should be common knowledge because it explains a lot about how we react to things in the real world. It’s not all fight or flight, sometimes it’s freeze. I’ve seen  bunny rabbits freeze when the dog runs by. I’ve seen mice freeze when they spot a cat. Freeze as an adreline respoonse makes sense to me. And also for cancer patients, we are actually coached to “freeze”. Think of how many stressful tests there are where the technition says to you, ‘don’t move’. Freeze. For a cancer patient “freeze” becomes the trained-in stress response. They don’t want us fighting or fleeing. Freeze is just perfect as a stress response. But don’t kid yourself. It’s just as hard on your body, and it’s just a hard on your ability to make memories. Freeze. 

    There was lots in the introduction to the program that made me feel better. Guess what, no one has perfect memory. And sometimes it’s better to be able to forget and just let things go. And for me personally, I have always had grammar and spelling issues. I’m making new mistakes now, but it’s not as if I wasn’t making any mistakes before. Everyone has their strong cards and their weak cards. This course is going to teach us how to play our strong cards. 

    This is an approach that really appeals to me. I get mad at education that only focuses on the student’s weaknesses, the education plan that gives you extra work to do in your weak areas at the expense of time spent on further developing your strong areas and totally forgets to nurture you in your talents. Education that operates as if the goal of humanity was to become this one evenly capable, universally capable mass. Personally I love the eccentricities that make people brilliant in one area perhaps at the cost of another area. I love that people have their different strengths and weaknesses and think the world is a better place with we have lots of that type of diversity - and share. Those of us who suck at music still get to have amazing beautiful music in our lives. Something to dance to. I always resist a plan to improve on my weak points without recognizing my strengths. So normally I don’t like education programs. But I like the basic premise of this program

    We’re going to fix my brain by playing my strong cards. They will be training me to use my strengths to overcome the chemo, stress damage and get me back on track again. Okay. I can get behind that idea. 

    I was supposed to see the radiologist today. I had an appointment and everything. Dr. P wanted me to see him as early as possible, I am still preparing for surgery and they already have me preparing ahead for the radiation that will follow. But the radiologist cancelled the appointment. He won’t see me until after the surgery results are in. He refuses to see me until the surgery is done and the tests and examinations are complete. Only then will we talk about how much radiation and what kind. Period. End of story. So that appointment has been put off for a few weeks at least. 

    These doctors don’t all see eye to eye. But Dr. P also tells me that I will like life on the radiation floor better than life on the chemo floor. He says that it is all run in a more human way. The waiting room has a gas fireplace and artwork on the walls, comfy chairs and coffee tables just like you’re hanging out in a coffee shop and not a hospital waiting room. Free coffee too. 

    Tomorrow will be a busy day for me. I have an appointment with the lymphedemia specialist in the morning and then I’m going to the breast cancer support group, they have a dietician coming in to talk with us about cancer and diet. I’m looking forward to it. And I feel more ready to face that group again now that I’ve had a chance to adapt to my bad first experience and laugh at myself over it. 

    Dispatched: April 23

  • 22 Apr 2019 6:01 AM | Contact Me (Administrator)

    Time is moving fast. This is the time that I wish I could slow down. I wish I could stretch this time out longer and longer. Cancer stopped. Side effects bearable except for the odd bad night. I'd like this to last at least another five years. This month, paused and extended for longer. Before surgery. Before radiation. 

    Monday morning. Time is racing along. This is my last week to myself before my sister comes and we start to ramp up for the surgery. She will be here on this night exactly a week from now. And we'll have a few days of fun, hopefully with sun, and then Thursday night we start getting ready for the surgery. Friday is surgery day. I don't really have anything on my schedule after that. This Friday was still a bad day for me, I had chemo ghost flare ups, and yesterday, Sunday was even worse. My face got hot, and flushed and I felt shitty all over. That allergic reaction just springing to life on it's own. This morning it is better. But I felt pretty terrible last night. 

    My muscles and bones were sore. My bones felt like they were melting. It was mainly my right hip, and shin bones. I had shooting pains. And my whole body just didn't feel right. It was enough to keep me awake. I had trouble falling asleep last night. My husband suggested I take some drugs, but I am trying to get myself off of all these drugs. So I didn't take anything, not even a Tylenoyl and the misery did settle down enough that I could sleep, or my skill and will at relaxing and putting myself to sleep started working for me again. Either way I fell asleep and then slept soundly until 6 am, and woke up feeling okay. Feeling fine this morning. Though I have to say that last night was actually some of the worst that I've had so far with this whole chemo adventure. More than three weeks after the end of chemo. Sigh. 

    It's depressing because now I feel like I'm damaged for life. Like this will be the rest of my life now, I won't get any better than this. And this isn't even all of it. This is only part of it. There is still surgery and the effects of that, and radiation and the effects of that. Still to come. Tough stuff to get through. Lingering side effects to live with for the rest of my life.  

    Time is moving fast. This is the time that I wish I could slow down. I wish I could stretch this time out longer and longer. Cancer stopped. Side effects bearable except for the odd bad night. I'd like this to last at least another five years. This month, paused and extended for longer. But it's racing ahead just as fast and as relentlessly as the chemo weeks. 

    Last week was my last, only week of no medical appointments. It was my only week of feeling pretty good. I did not race around doing me things. I was still pretty slow. I mostly just enjoyed being comfortable. I mostly just picked up on a few things that I used to like to do like cooking and trying out new recipes. I extended my social media circle. I chatted with my son a fair bit on Skype. It was a social week. In the end that's mainly what I did with it. Used that better energy to maintain contact with the people that are already in my life and supporting me. And to extend my social world, I'm reaching out to the newer people in my world. In the end that is what I've done with this month of recovery - made friends, kept up with old friends. 

    There wasn't as much good time as I thought I’d get. Three weeks of it were still chemo sick, and I even still have those chemo sick moments. So it was mainly the time, simply not having to spend so much of my life sitting around waiting to see one doctor or another, or waiting around for my chemo treatments, waiting for some nurse or other to change my drip. Two days of my life every single week given over to that. Then the allergic reaction on Thursdays. So it was really three full days every week. I got those days back. And I do feel better, but not as better as I did back in January when I first stopped the AC chemo. That was a huge, huge relief and I was expecting something more like that. I am definiately reduced now. Even more than three weeks later I still have these bad nights. 

    But the days are better. And I am building up my strength. Yesterday I not only walked as far as the park, going the my old walking up the mountain route, my taking Moose for his Saturday morning walk route. I walked along the path all the way to the statue, back home along the tennis courts, stopped at the grocery store to see if they had a nice roast for supper, they didn't, and came home again. That was a huge walk for me. And I felt fine the whole time. And I walked at a steady pace that was not significantly slower than anybody walking around me. Lot's of runners out on the mountain yesterday and they ran past me, but the walkers didn't blow past me this time. That means I've started. I can get to the mountain and back again. That is my new baseline. I'm well passed just making it around the block now. My range has extended significantly. And now that I know I can get to the base of the mountain I know that I can just keep extending that range gently. I'll do this walk every other day now. Do this same walk three or four times. That will be the project for this week. Solidify my health at this level. 

    Do I think that's what trigger the chemo flashback last night? Could be, could be that the increased exercise does move the chemo stuff through my body more. But I'm still going to go forward with exercise. It's an important part of my mental health and a good life. It's like coffee to me now. I won't give it up. So the deal, now that I know I can do it, is to keep doing it. Solidfy that. And then I can gradual increase it. Walk a bit higher each time before I turn around and come back down. Luckily Mont Royal has lot's of trails and paths cutting across and going back down. This will be easy to manage. It will just be a case of doing it. And the weather is getting better. Now is the time. Later on it will be too hot to walk around outside. Do it now. Work on it over these next few months. Later when it's hot, I can back off on the walking and start to swim. I should be able to start swimming again in June. The timing is perfect. 

    Yesterday was the first day that I've been 'off road' it was the first day that I left the pavement. I followed that little path where my husband and I walked the night that Moose died. The place where Moose seemed to run so happily ahead of us, not knowing that he was dead, only feeling released from the pain of his body that didn't function anymore. Me feeling that glowing ball of happiness in my chest and knowing, that's what it feels like to wag your tail. You don't feel it in your tail at all. You feel it in your chest. I walked up that little trail yesterday. Not a problem even though it is a bit steep. It felt good to get off of pavement and walk on dirt and have trees all around, even in the middle of a big city, it felt good. And I did do the walking meditation too. Back on the mountain. Walk looking outwards for 3 seconds, walk looking downward for three seconds. Count out the time in your head. Let the counting fill your mind, let the images fill your mind. Let your steps set the rhythmn. I made this up, some version of this. I really like it. It really works for me. I'm a visual person. I like the way you get better at it the more you do it, and your mind does simply fill with the images, and it's always a bit different, when you look up or down because you're moving. The image is different each time. And I remember from last year the way that sounds start to come into it, you start to hear more of the sounds around you as the thoughts inside your head stop, and you start to smell more too, you smell the scents of the trees and dirt more as you do the meditation walk, more than when you first stepped onto the trail. I like it all. And it was good to remember and do a bit of that yesterday. And it was a nice, sunny day, not really warm but sunny. 

    My husband wanted to rebook our scuba trip for next year. I can't promise I can go. I don't know what my health will be. I'm not even through this treatment yet. I can't be making promises for my future before I know how this turns out. And so we left it at that. There are still unanswered financial disability questions too. 

    I started writing the thank you letter to my son. It made me cry. Just writing the letter made me cry. It's all true. Everything I started to put in it is true. You just don't say these things in everyday life, they are the unspoken things. But I want to say them. That's what's going on here with these gratitude letters. It is a bit like some kind of twelve step program that I'm doing here. Expressing gratitude. Saying the unspoken things. I guess it's also a bit morbid. I hope they don't take it that way. But that is one of the things that's changed. Start making more of a point of saying these things. Letting this next generation know how impressed I am. I am impressed. There has been a shift in our relationship. 

    I feel okay to move into this other world where I am “doing” less. A quieter life. It's rewarding. Writing these gratitude letters. It feels good. I feel deeply, deeply much better doing it. The main event will be going and physically reconnecting with my family and friends, having some good precious time with them. 

    On this day last year I was running around the city with grandson. He was here for spring break. Only a year ago. I was working Executive Director job, getting ramped up for the conference but things were well enough in hand that I could also spend that time week with my grandson. We had a good time. In 2008 I was making a big home cooked meal for my nephew, he was living here and going to McGill. You can see that in the end my priorities have not changed all that much. The way I spend my time. The things I like to talk about. 

    But also It is hard to imagine it was only a year ago. I was so full of myself. So confident. So healthy. But I wasn't really healthy then. The cancer was there already.  I just didn't know it. I guess that is what I think I want to go back to, just not knowing, I can actually live with the cancer being small enough it doesn't threaten my life, slow growing enough that I can live out a normal lifespan without disabling myself over treatments. I can live with that. This cancer got life threatening. It started to spread. It was already in my lymph node. But it may be gone. Or it may be knocked back to 6 or 10 years ago. We don't know yet. The lab results will tell us some things. And only time will tell us the other things. 

    Yes, it is like having an earthquake in your life. You don't know if that was the big one, if there will be tremours, or if the big one is still to come. All you know for sure is that you live on a fault line. And you make your plans accordingly. You rebuild your life accordingly. You don't rebuild your life exactly the same way as before. That would be foolish. 

    Changing the way I spend my money. Changing the way I spend my time. Time is the big one. Changing the way I spend my time. It's more precious now. But I'm in less of a rush. Slow down and savour time. Choose how I want to spend it, and then slow down and savour it. This is me now. Rushing around, being the executive director, getting a lot of things done at once, executive director and Grandma all at once. Plus exercise ninja, fierce dieting I was losing weight at this time last year. All of it at once. Money to spend. Time to burn. I never wasted time. And it was good to be like that when I was at  that productive stage of my life. I'm in a different stage now. 

    I got catapulted into this different stage all of a sudden.


    Dispatched: April 22

  • 21 Apr 2019 5:53 AM | Contact Me (Administrator)

    My muscles are sore. Every day I wake up with sore muscles. When I'm awake I'm doing more. Or doing it more robustly. When I walk, I walk at a good clip now. I go to this store in  this direction, and then a couple of hours later off to that store in that direction, walking normal speed both times, passing the old folks in the street, the same ones who used to pass me. And even when I'm home in the apartment I'm moving around more too. Getting up and down, working those thigh muscles, puttering around. I did not realize how far down I actually, physically was until I started coming back up again. I have the sore muscles of an athlete in training just from normal daily life.

    Sunday morning. Slept in again. Went to bed early, slept (more or less) all night, plus I had such a deep sleep dream nap during the afternoon that I woke up thinking it was the middle of the night. I am feeling better now. I don't have so much of the chemo sick feeling. But I still don't get a lot done. I'm tired. Just plain tired. Not blood sick. Just tired. Recovering I guess. I guess my body is working overtime to really recover as much as it can before we hit it with whatever it was that knocked it back so much over the winter. This feels different from the chemo fatigue. This is not even mental depression. Mentally I feel okay, though I am balanced in a new, darker place now. I would not say that's depression. I don't think. I'm just plain physically tired. I do things, I get up and I do things, but I don't feel so ambitious and I do seem to need to sleep a lot. This is different than the chemo fatigue hits that either following the chemo pattern, or hits you like a wave that says 'do this now’. Sleep right now. Eat right now. I'm just tired the way you feel after a bit bout of the flu, it is more like that. Generally tired and weaker than you expected to be. 

    My muscles are sore. Every day I wake up with sore muscles. Some of this is from lying in bed, the long sleeps. You wake up stiff and sore and sluggish if you've been in bed sleeping for a long time. But some of it is that when I'm awake I'm doing more. Or doing it more robustly. When I walk, I walk at a good clip now. I don't do my daily around the block anymore. But I do go to this store out this direction, and then a couple of hours later off to that store out that direction, walking normal speed both times, passing the old folks in the street, the same ones who used to pass me. And then when I'm home, in the apartment I'm moving around more too. Getting up and down, working those thigh muscles, puttering around. I did not realize how far down I actually, physically was until I started coming back up again. And I'm heavy. Really heavy. I haven't weighed myself but I can tell by my clothes that I'm heavier. And that means I drag this extra weight around like a big packsack, or weight belt every where I go, for everything I do. I want that to be gone. I want to feel light again. 

    Yesterday I did housework. First I did the big monthly clear out on my bottle garden. That was one of my big housecleaning jobs. The other one was the medicine cabinet in the bathroom. I did that and few other little bits in the bathroom. My husband is surprised at how much bathroom work I'm doing. But I'm doing it for two reasons. One is so that it's not so gungy and likely to cause infections after I come back from the surgery. And the other is so that we'll be more ready to renovate later this summer. I told my husband about the surgery idea. I haven't mentioned the renovation yet. Wait until the medical stuff is over before we get into that one. And the rest was pretty normal weekly cleaning. Sweeping, dusting, vaccuming. None of it is a big deal since I've been able to go through once a week and stay caught up.  

    And this is my month of just being, just being and getting better. Whatever I want. I promised myself a month like that. I am writing my thank you notes, and they have turned into a really rewarding experience for me.

    Yesterday I had a good long facebook chat with my granddaughter. She was all happy about going to the Cirque du Soleil show Kurios and thanking me for the tickets, and the flowers too. And she told me that she's on the honor roll at school. Wow, Whoa. She is quite proud of heself, first saying that a lot of people are on the honor roll so it's not such a big deal, I told her that there are a lot of people at her school, that's why, it's still a big deal. And she said that well, actually, it's a tough school, known for high academic standards, and so yes, she was pretty happy to be on the honor roll. I answered that I knew she was worried about about it when she first started there, but I also knew she could do it if she wanted to, she was plenty smart enough. I was proud of her. 

    And I was proud of me. It worked. That little thing we did with her last summer, getting her working part time for the production company doing transcriptions, and getting her into the graphic novel class where people take themselves and their work seriously even if it is graphic novels, just being around a way of life and working. I hoped it would give her that bit of insight and change that she'd need to get herself through high school, that change of perspective from the most important thing is your peers, to the most important thing is actually the work you do, the thing you are doing, the long look at your life. It helped. She was able to take that and turn it into something. She did it. Good for her. I was really thrilled inside myself over that. I feel like my granddaughter is kind of launched now. Even if she falls back, she knows what this feels like, she knows how to get here in her life if she wants to. Sometimes you have to be strong. Sometimes you have to do the hard thing. My granddaughter is really stepping up this year. I am proud of her. And I like her. I like the young woman that she's becoming.  

    And I'm enjoying this time in my life. Just mostly being. And the weather is cooperating too. It did cloud over yesterday, and it was like someone turned the lights off. But the sun is out now. Feels good. I am taking each day as it comes. Enjoying each day as it comes. That is what I am doing. I feel deeply calm and contented. I am periodically taking the vitamin B pills. Not every day. But I'll take them a couple of days in a row. Then back off for a while, then take them again. That seems to work best for me. And I don't even know for sure if I should be taking them. I know I was warned off supplements at the beginning of the chemo. But Dr. P told me to take the vit D pills. And I've been reading where other people's doctors told them to take the Vit B6 & B12 during their chemo with taxol. And I think my whole cream of wheat, more meat and dairy did provide me with that. And I find it is helping, it seems to be helping me stay calm, it helps my nerves because I was flipping out a bit there at the end with the taxol. It was wearing down my nerves, not just physically, but in the mental sense as well. I felt 'frazzled'. I don't feel that way now. I feel calm now, and centred. This Wednesday the dietician comes in. I have questions. I'll ask about the vit B6 and B12. And also about the probiotics for after surgery, when I know they'll be giving me antibiotics. And I'll ask her about when I can start eating regular foods again, blue cheese, raw vegetables. I've already started on my way. And it's been okay. But it would be good to get her official opinion too. 

    It's a nice sunny day today. I might go for a walk over to the mountain. Perhaps this morning, I might try the old mountain semi short walk. This is the version I used to take Moose on, when he was too lame, too much of a Lab dog meant for swimming not walking, to walk up the mountain and back down, but still in his prime. When my husband was sick I would take Moose on his Saturday morning walk up the mountain. We'd go just up to the flat part, that first flat part where they do the larping and medieval play fights, and walk around on the flat. Just play there, sit down at the top of that first little hill together and look down on the city. The spot where we took the kids sliding when they came up for New Years. That spot. 

    But other than that I have many options. I can go for that mountain walk. I might even see if my husband wants to come too. Or I can pick up a nice roast from the organic store, one of the big chickens they sell there and make it for supper. With a dessert, perhaps a lemon merigne pie? Or an apple crisp for my husband? Spend the afternoon with the smell of delicious food cooking. Listen to Mary Hines and Tapestry on CBC radio. Maybe even do a bit of knitting. You see now I've gone too far. I can't do all that. It's supposed to rain tomorrow and the next day. I have the radiology appointment on Tuesday, and then a full day of cancer life on Wednesday too. Sort of back to the old routine for part of next week. And then my sister arrives Monday night. No appointments for the rest of that week, but it's getting ready for surgery Thursday night, and surgery on Friday. 

    I need to keep going on the cleaning, gradually getting a space ready for my sister, make it inviting. And then a big houseclean on the weekend. Change the sheets and all that. And away we go. We start off the surgery week with good sister therapy. 

    Dispatched: April 21

  • 20 Apr 2019 6:24 AM | Contact Me (Administrator)

    We are starting to sync up again, body and me. Mind. Body. It did seem like we flew off in all directions for a while there. But now it feels like it's coming together again. Not the exact same beast that got blown apart, but recognizable. I'm starting to recognize me again, even with some of the new features. The new lightness and the new center point. 

    Saturday morning. My recovery from chemo continues apace. The day before yesterday I quit using the nose drops. Yesterday I quit using the eyelid gel. My daily ritual is down to a bath, brushing my teeth and general body lotion. Pretty much what I was doing before. I'm close to a normal schedule. And I'm napping every third day. My skin is recovering, tanned looking and lightly brown where the worst of the red allergic reaction happened but other than that pretty good. My face got hot and red on the cheeks for a couple of hours yesterday. My whole body felt blah when that happened. And at first I thought it was the start of a fever and that I was finally really getting the cold that's been going around. But then I saw my cheeks and realized that it was the allergic reaction flaring up. What's with that? Is body doing this on it's own now? Or are bits of the chemo still zipping around enough to cause me to react? I thought the chemo left your body fairly quickly, and just the damage lingered. But maybe this is what they mean by that? Anyways it went away again on it's own after an hour or so, and I'm fine again. Back on track again. 

    I even feel pretty good. Energy. I even feel like someone with a life and energy to live that life. Whew. Chemo. It does a number on you alright. 

    I have been being kind to myself this week. I get out and do things, I do my life. But I'm not pushing myself. If my list doesn't get done, then it doesn't get done. I do what I feel like. This is the month that I had promised to myself. A month off. And next month too. Just to be me, just to recover. I need this. I am enjoying it too. 

    Yesterday I went to the travel store and bought myself a baseball styled hat with a neck flap so I don’t burn my naked neck. Thirty bucks. My husband hates it. He thinks I look like an eccentric old lady. He likes my long blonde wig. Sigh. Oh well, I'll wear that when we go out. I don't like it. I feel like it's trying to hard to turn back time and turn me back into somebody that I'm not anymore, and also somebody that I don't want to be either. On the other hand my husband has been so good about the whole bald thing, and my appearance as it deteriorated, this seems like a small thing I can do for him, wear the damn wig, and I don't have to look at myself in it. And it makes him happy. I am more mellow on that front these days. 

    My husband and I went out to the new dumpling restaurant at the end of the street for supper last night. It was a good experience. We haven't been out together since before Christmas. It was good to get out. And the food was fine and it wasn't too expensive. And I wore my wig. And it was called Harbin Dumplings so my husband took a picture of me outside by the sign and I texted it to my friend K and we had a nice little chat about Harbin, and maybe her coming to Montreal this summer after I recover from surgery. That would be nice. This business of having people come here more is working out for me. Just up to my husband and I to make everybody feel welcome and wanted so they'll keep coming back. 

    And I am doing the, one day, dreamed about doing things right now. Yesterday I walked over to the the little plant/flower store that I like and I spent twenty-seven bucks. I bought three little pots of miniature daffodils in full bloom, one pot of crocuses that are just starting to come up, and two hellebore plants. I put all of these plants into the window boxes right in their pots, I did not try to transplant them, I just buried them pots and all in the dirt. It works! No set back on the plants, and they look great in the window boxes. And it does add this whole spring brightness to the balcony. Not much money and not much effort involved either. Why didn't I just go ahead and do it before now? When I actually went to do it, it was so easy, and inexpensive. 

    I have been feeling deeply calm lately. Yesterday was a good example. Physically comfortable and deeply calm and kind to myself. How much is honest recovery, and how much is the extra vitamin B pills that I started taking? How much is it simply coming off the anxiety causing chemo drugs? How much is recovering after withdrawals from the anti-anxity pills? And how much does that matter?

    And I'm more able to live a more calm, controlled life. I'm eating better. I'm able to eat more food less often so it's meals again for me and I like that. It gives me time to do other things, and it's easier to pay attention and make the eating worthwhile. Yesterday it was cream of wheat with a banana and brown sugar for breakfast, bowl of tuscan bean soup with an open face toasted cheese bun for lunch. Small yoghurt, dried apricots, cashew nuts for a snack. Small glass of milk. Several large glasses of water. A pretty good day of eating. Dumplings for dinner. Mostly coriander pork, but a couple of red curry chicken too. Still pretty good. 

    This is better than the stage where I couldn't taste anything and felt a bit sick all the time again and was just nibbling bland sweet stuff all day, in massive amounts. I am gradually getting a grip. I am treating this way back into better eating habits the same way I am treating this way back into more exercise and a more active lifestyle. Going slowly. Lot's of little milestones along the way happening now. 

    So that was two new things yesterday, two back to my old life things. And the business with the balcony bulbs was a whole new thing. So yesterday was two steps towards getting my old life back, three if you count getting a better grip, if not perfect grip on food, and one brand new step, going where I have never been before, but where I always wanted to go. A pretty good day. Plus chatting on skype with my sister and old friend. I had a deep, calm comfortable nap on the couch too. It was a nice day and I thought about trying the walk over to the mountain, and maybe even going as far as around the flat part at the top. But I was tired, my eyes were tired. And I'm not bugging myself. I'm back to listening to my body and taking care of it, and so I laid down on the couch, felt good and drifted off into a nice sleep. Wasn't a long nap but it was a really good one. 

    Gentle life for me all this month. Taking care of myself so I'll be in better shape for the surgery. I can't do any more about the whole next phase, the whole cancer question than that. 

    Nothing for me to do but stay calm, stay optomistic, sleep at night, get out and get exercise during the day, eat healthy as I can, keep taking those steps towards exercise and healthier eating habits. Reach out to my friends and family and show my gratitude while I can too. It's good for them and it's good for me. And enjoy these good days of warm sun. Simply that.

    In the meantime, I'm off to have some breakfast, get dressed, and get going on my day. A lovely day to play with the bottle garden! And I'm feeling good to do some housework too. Soon, in a couple of months I'll be back to the swim routine. Me and my new boob. Now that will be a milestone! Only a couple more months. Of course a lot can happen between now and then. But still, feeling the way I am today, it's within sight. Wow. It is. It's within sight. This is the first time that I've seen the sign for that one. On another Saturday, sometime in the foreseeable future I will get the housework out of the way quickly, and then go swimming. I'll sit in the sauna, I'll have a good, but not stressful swim, I'll sit in the hot tub and massage all those sore muscles and joints that have spent the winter both idle, and being attacked by terrible chemicals. And I'll come home feeling relaxed, refreshed and just great. I'll start that weekly routine again. It could be. This is the first time I've dared to even image that it's feasible. Truly I feel like I probably could do it today, except for the hassle of starting up my membership only to not use it again until after everything heals from the surgery, and maybe the radiation too. Not realistic until July. But still tantalizingly possible now. I feel like I could do it. That's an important moment. This  is the first time I've felt that way. Before I was just too sick from the chemo. Even if I was willing to break the rules, I was too sick. I would never have even made it downtown, but less through the sauna, and into the pool, and the whirlpool and home again. I would've passed out, or vomited, or both. 

    Now I am coming back. Now I probably could get on the bus and go there, pull it off it I did it all lightly, just a touch of sauna, an easy slow swim, not too long in the hot tub. I would be good and tired at the end of it. No, I still might not be able to pull it off. Not quite yet. Still building my way up again. Let's respect our body and not push it. 

    That is the thing that has started to happen again that makes me feel better. I'm listening to and hearing my body. We are back in communication. For a while that relationship was blurred by all the crap that was happening. The random shooting pains, the allergic burn pains, the cellular damage, the idea of the presence of cancer, that kind of self betrayal, adjusting to all of that. It turned into a conversation that was all screaming and yelling followed by deadly silences. For a while at the end there it felt like a marriage going down the tubes. This relationship, me and my body is on the rocks. But it is resolving now. Settling down. The yelling and screaming is more subdued, more reasonable. The silences are not so scary, mere silences and not frightening absence. We are starting to sync up again, body and me. Mind, body, soul. It did seem like we flew off in all directions for a while there. But now it feels like it's coming together again. Not the exact same beast that got blown apart, but recognizable. I'm starting to recognize me again, even with some of the new features. The new sweetness, the new lightness, and the new centre point. 

    Dispatched: April 20

  • 19 Apr 2019 6:40 AM | Contact Me (Administrator)

    I was expecting to gain focus and intensity, I thought I would finally drill down into one point of purpose. Instead I lifted off. I drifted up into wide open space. I discovered that I don't need anything more than the dawn of a new day, and the sunset of this day. That the seat of meaningful purpose for the rest of my life is within me. That's it. That's all.

    Friday morning, it's grey this morning but still warm out. My window is open and I'm enjoying the breath of fresh air but not freezing at 6 am. I think that winter is truly over. And I've been putting my money where my mouth is. Yesterday I wired the geraniums onto the balcony ledge and I put up the fake big wasp nest designed to deter wasps from building a real nest nearby. 

    I was fluffing the geraniums, brushing off the dead leaves and letting them blow away in the breeze when the cafe owner down on the ground floor asked me to stop because dead leaves were blowing across their little terrace on the sidewalk, disturbing his customers. I said sorry and stopped. I did not say anything about how he had been stinking up our apartment all winter with their cooking and making this poor chemo lady even more nauseaous. I did not say anything about how their cafe patrons make noise and disturb the production crew when they are recording narrations on the second floor, and I did not say anything about their patrons sitting on our stairs making it difficult for us to get up the stairs. We all have to live together here. I will make a note to do all that gardening stuff - when? In the rain? At night when the cafe is closed? Anytime there is a nice day they will be open, so at a certain point they will just have to suck it up. Just as I had to suck it up all winter when they were cooking and the smells came up here. And just as the poor fish store has to suck it up when we occassionally overflow the sinks. We all have to suck it up. That's life. 

    I did get a great idea for this stage of the garden. My favourite little plant store is selling small yellow daffodils in pots. I think I will get 4 or 5 of them and plant them in this window box. So there will be a row of daffodils blooming along with the hanging geraniums greening up. That was one of my 'someday' dreams, to put up an early spring window box. Today is someday. I'm doing all the somedays now. So yes. Let's go for it. A small inexpensive gardening project for today. 

    Yesterday I did get the income tax stuff all done before my husband left to go do the car tires at 9:30. It wasn't a hard job, I'm pretty organized and I have the year before to follow as a general guide. And I'm not doing the actual income tax itself, I'm just getting all the income forms, and my expenses organized to hand over and get turned into the actual income tax form by the end of the month. That's done now. Check. 

    I started reading Unbroken. It has some moments of really good, masterful writing, but it's not all really good masterful writing. And so far it's a fairly standard format for a biography/memoire. I learned, or had re-enforced, the importance of a really good prologue or premise that sets you up for the whole book. That one document. It's like the manifesto. Unbroken had a great one, and so did The Life of Pi. 

    Just getting my health back is my main game here. Mentally and physically. I did light, 'normal' things all week. I started cooking again. I started yoga again yesterday. I've been walking further out into my old territory in the neighbourhood. And I've been playing with the garden stuff a bit, lightly each day. And I've been doing a bit of extra housework too, washing the blankets/oven mitts/rugs. That is how I've spent this mostly free week of feeling pretty good. Of starting to feel like me again. I've simply been a bit more me again. And I was surprised at how low I fell. I could not even cook at the end there. I really was in a fog. I can see that as I come out of it. Gently, gently. This week other than writing in here, in the morning I set aside writing projects. I started a letter to my friend D but it was heavy and dull and all about me. I didn't like it and I set it aside. I felt like I couldn't write. I felt like I just didn't have it in me. So I didn't. I just set that letter aside. 

    Yesterday I picked it up again. Yesterday afternoon when I realised that I had done all my to dos for the day. I even had a nap. I'm at about one nap every three days now. I don't need a nap every single day anymore. Yesterday was a nap day and it felt good. I am feeling good, I'm feeling good in the sense of loving me, loving myself, being lovable, and being loved. That was a better place to write from. From that place I could reach out and share myself with D, be a friend back to her and show my appreciation. I picked up the letter writing and it was better. It has better connections between our lives. And I was able to make a good, she'll have a laugh story out of the wig episode for her, a way to let her know that while I'm still in it, I'm also me, with my sense of humour and this cancer adventure is not so dour as all that, and we can laugh along the way. Laugh at me, together. Relief. I hope that what she feels at the end of the letter is appreciated, and also relief from a bit of worry about me. I'm okay. Writing the story of our friendship, re-enforcing it, building her up as the kind of person who is a good friend, and what a valuable thing that is. That is my gift back for her support. 

    I felt good about nailing that D letter yesterday. I worked on it until after 6pm and supper was ready. I felt so good and satisfied. Time just flew by. Time flies, you don't get bored and you feel so good. Mentally and spiritually it's like the most fabulous rewarding holiday mixed with job in the world. I love writing. I loved it yesterday again when I got it right. 

    And the flow of it. Having the days where you don't actually work on what you are writing, you do other things and let your brain work within itself. I haven't done that for a while, but I know it's effective. I've been such a writer-for-hire, under deadline, under pressure that I forgot how nice it is to let the creative part happen in a better way. Re-learning that, learning how to write again in a different way. This is what I want to do with the rest of my life. The rest of it is just stuff that happens around that as far as retired or not, to live here or there goes. 

    What have I learned out of this whole cancer, being knocked off your pins for a full six months experience? That my happy place is not a place, it is an atmospheric condition that happens everywhere on the planet, it is the light of dawn and the light of sunset. That is my happy place. It's in the sky. Magic hour. I don't need to go anywhere to get to my happy place, it happens every day, twice a day. It comes to me. 

    And my retirement project, my retirement life is writing, just sitting down and writing. Making story out of reality. Finding those little kernals of truth and playing with them polishing them up into laughter and joy, carving them down deep into tragedy and despair. All the parts of life, being there, being there with other people, taking them with me. That's what I want to do for my next act. 

    I was not in this mental state when this all started. I was busy working. I was busy being in shape. I was busy eating right. I was busy keeping in touch with friends and family at a distance. I was busy flying around. I was pretty busy. I was strong and healthy, being successful, making money, travelling the continent, having a life style. I had a lot of different happy places, but they were all places. At my kids house. At my sisters house. At my brothers house. In Bonaire. In Banff. At the ranch. 

    And I was writing, and I was organizing things. But it was all for someone else. These were all real, paying projects. 

    Now I have learned that my happy place is everywhere. Now I've learned that  my sense of purpose is within me. 

    That is what I've learned from this whole crappy experience of facing a slow lingering death from cancer, and trying to beat it by going through a near death by poisoning instead. 

    I've learned that I don't need to go anywhere, move anywhere or think about that over much. I've learned that I don't need to get a job, keep a job, change a job. My happy place is in the sky and the sky is everywhere. I've learned that I don't need get or keep any particular job. The meaningful part of my work is within me. 

    Both of these things tell me that I can thrive, not just survive on very little money. None of these things cost money. I can be pretty rock bottom and still be very content. 

    I'm feeling pretty centered and relaxed within myself. My sense of self has changed. I thought I would get torn apart and rebuilt into somebody a bit different, but I didn't not think it would happen the way it did, and I did not think that this is the person that I would get rebuilt into. Someone so light, so almost nothing in my needs. I did not expect that. I thought it would go the other way actually. I thought that I would get more focused and dense. That's what I thought would happen to me. That it would be a case of okay, now I've been through all this I know what I want to do, what I want to do is this, and I would go about doing that with greater intensity and focus. I admired intensity and focus. I guess I was even hoping for that. I guess when I said, bring it on, to the chemotherapy challenge, and made the nurse blink, that is what I was willing to walk to hell and back for, a new sense of purpose, enough intensity and focus to push myself through to do the things in life that I've imagined for myself but never really had the guts to do. And I have done a lot. It's been a great life. But I also never took this last step towards what I really felt, until now. 

    And it turns out that while focus and intensity, and courage got me all those other things, that's what got me to here. And here is a good place. It turns out that when you walk to hell and back you don't improve your focus and intensity. You don't keep going in the direction you've been going. You have to turn around and go somewhere else to get out of there. When all the extraneious stuff falls aways from you, when you have to let go of everything but the final thing, the essential thing, in order to simply stay alive, what is left is not a single focus. It is not the dense power of a black hole. It is light. Lightness is what I discovered instead. Wide space instead of narrow focus. That is what I ended up with. 

    I thought I would finally drill down into one thing, the thing that was my thing. Instead I lifted off. I drifted up into wide open space. I thought I would focus down on what I really needed. I discovered that actually I don't need anything more that the dawn of a new day, and the sunset of this day. That the seat of the meaningful work of the rest of  my life is within me. That's it. That's all. It's not much these things that I need to have a deep and fulfilled life, not just a shallow busy life. 

    I take love for granted. I have love, I give love. This has not changed. The walk through hell had no effect on the way I feel about my family and close friends, even my favourite acquaintances. Okay, I take that back. It did have a big effect on one of my loves. It had a big effect on how much I love me. It had a big effect on how much I accept me with all my flaws, even when I'm not being me and my body and mind are lost in chemistry. That is the only love that has changed. That is the only kind've love that has been affected by this walk through and around the edges of death and back. I feel me more through the eyes of the people who love me. All the people who have loved and supported me through this, all of the people who need/want me to be alive, but who will also love me enough to see me out of this world when the time comes too, if they can. I have felt myself through them. I have felt their love and it has gone deep inside me. It's not something I have to earn. I can just be. I have it. I give it. Love. It just is. So that is another flavour of lightness. Finally accepting all the love that comes towards me and letting it be at my centre. And love flowing from there outward again. Don't need to hang onto it, better not to hang onto it. Don't need to earn it, just let it flow. That's all.  Within me and without me. 

    This is different than the pragmatic end of chemo assessment that I made on Wednesday, yesterday. It is still the before and after chemo assessment, but it's on a different plane. 

    I have seen these results in other people who've gone through chemo. They change, and it's not just the physical changes. Some big inner thing changes, and it stays changed. With my brother it was accepting help, having family and accepting help and support, without shame and bullshit. Just accepting. I guess it's similar with me. You learn it's okay to not be so strong all the time. And for some strange reason knowing that  makes you stronger. People love you anyway. They step up to the plate and take care of you, show their love in whatever way they can. It makes you stronger, not just to get through the cancer, but also for the rest of your life. Inner strength. Been carved a bit deeper and there is strength down there. I suspected all that. But I thought it would be this focused strength. Not this lightness. 

    I like it though. I like it better. 

    Dispatched: April 19

  • 18 Apr 2019 5:46 AM | Contact Me (Administrator)

    I have been getting emails about the conference, my old job. And now I am remembering the thrill of it. I actually liked that whole conference experience more than I thought. I did like the roller coaster excitement every year. It was fun. And it is fun to watch it go by now. 

    Before dawn of another beautiful day. The grey wintry days are behind us now even if there will still be rain and other kinds of grey coming up. I'm cheating a bit sitting here writing this. I was supposed to do my income tax before now. Have it ready for my husband to take/send to the tax guys by Thursday. I assumed that meant sometime later in the day and not on that strict of a schedule. It means 9:30 this morning because my husband has an appointment to take the car in to get the tires changed. He only told me last night. I thought I would probably have the morning to work on it. I didn't do it yestereday. I did laundry instead. I did the towels, blankets, oven mitts, and the rug in the kitchen. I did the stuff that is household laundry, not my personal laundry, laundry that hasn't been done all winter and needed to be done. I did it because I didn't feel like doing income tax stuff - who does? And because it was a nice day and I wanted to be out walking around in the good weather instead of being inside doing income tax. And I didn't do it last night because while I am feeling better, I know that I'm still weak, I know my weaknesses. I start fading around 4:30 or 5:00pm. I don't take to the couch in the evening because I'm lazy and self indulgent. I take to the couch because I'm too 'fatigued' weak to stay up and do things. I didn't start off making, make ahead dinners because I prefer them, I did that because I didn't know if I would still be able to cook later in the day. So ramping up with coffee and trying to get it done last night wasn't going to work. I know that my body is not strong enough for that yet. I am trying to get better. And I'm being careful because this is not the end. I still have the surgery and radiation to go through. I do not want to trash my body.

    It's too dark and weird to be doing income tax right now. I'm waiting for the sun to come up and for my second cup of coffee. If I finish before he leaves to take the car in fine, and if I don't then I can send mine along by courier. It's not that big of a deal. It's not worth a hassle. And my husband also just said, well do whatever you can. So he'd like me to be done by then, but it's not the end of the world. So. Yes, I can write here for a while. Until the sun comes up, and until I've had my second cup of coffee and I wake up more. It will feel better then, and if I'm not done by the time my husband leaves, then I will just have to find another way to get my tax stuff to the accountants, it's not the end of the world. 

    I have been getting emails about the conference, my old job. And now I am remembering the thrill of it. I actually like even that whole conference experience more than I thought. I did like the roller coaster excitement every year. It was fun. And it is fun to watch it go by now. 

    The dumpster truck is there. This is the old routine. Before I got that office job I was always up writing at this time. The truck always comes at 5:30. It's comforting. And the sky is lightening up. Morning twilight. Time for my second cup of coffee, almost time to start on the income tax stuff. Half an hour. 

    Yes I will start the income tax at 6:00 am. And that will be reasonable (for me) and that will give me three hours to do it.  And that’s around what it normally takes me to do it. All of this is reasonable. I do have it down to a routine. There will be differences this time though on account of the medical stuff. 

    I think I am fighting off that cold that my husband had. A lot of sneezing last night, plus some coughing. But it's just a cold. And it's still two weeks until surgery. I will survive this. If I have it. 

    I have started to be braver about food. I ate cold snow crab yesterday. It's super fresh right now, in a shell and then wrapped in plastic on top of that. And I think my body is recovered enough that I can start these riskier foods. I ate unpastuerized honey too. Both were fine. I am thinking about soft cheeses. And blue cheese. These are the ways I say goodbye to chemo. 

    And yesterday was the first day that used to be a chemo day that my husband forgot to make the wings for dinner. Yippee. I'm glad that routine has fallen out of his mind and it didn't take as long as I thought it would, I didn't have to push back after all. That's good. I'm glad of that. 

    So, today it's the income tax stuff. And it's just passed into 6 am. So I will need to put down my writing soon and start that. After that, I have the day free. I can do as I please. I had planned the day to do income tax. Once it's done this morning then I'm done and I can have the rest of the day free. I intend to enjoy it. At my own pace. Whatever I want. I have cancer, I have this little moment in time to relax, recover both mentally and physically. I have paid my way to be here, I don't have to do anything to justify my existence. I'm feeling good and confident. I want to stay that way. 

    Dispatched April 18

  • 17 Apr 2019 5:42 AM | Contact Me (Administrator)

    I will say that the wig moment was exactly like a teenage experience, out in public doing a new adult behaviour, being overconfident and having it go bad. I wore the wig to the laundromat, back and forth, no problem. I wore at home most of yesterday and into the evening, no problem. I was starting to forget that I was wearing it. That's how comfortable and confident I felt. Then I went out for that just one extra trip to get groceries.

    The sun is shinning. I slept from 10pm pretty much all the way, meaning that while I drifted to the surface I didn't wake right up or get out of bed all night until 5:30am. I feel really good this morning. Yes, I did have a bit of a throw back last night, with shooting pains happening here and there in my body. What the heck? But it wasn't much. For sure my nose has stopped bleeding, and the allergic reaction is reduced, it's only my face, the top of my cheeks that flare up by themselves now. But my finger tips are still numb, and so is my tongue. 

    What is making this big change in how I feel? I'm coming out of the fatique. I'm feeling more alive each day. I can stay awake without a nap. I still get the odd, must sleep now moment, but that generally happens at night, at the end of a real day, staying awake. I can go longer without eating. I can sleep longer. I can walk further and longer. Each day it's more. I did not think that was what health, and adulthood meant. Being able to stay awake, not having to eat every couple of hours, not having to use the bathroom so frequently, being able to focus on something for longer periods of time, going further for longer. It's such a simple thing. 

    But after six months of living first like an infant, only being able to sleep for two or three hours at a time, only being able to stay awake for two or three hours at a time, having to eat every two or three hours, and only being able to eat small amounts. And then graduating to being a toddler, so being able to stay awake for three or four hours, having afternoon naps, being able to have a more consistent schedule, but also going through the mental aspects of the shooting pains and the burning pains, it is a relief to be able to extend all those times without feeling really sick and it's a relief to have less random pain even if I have settled into this numbness in certain parts of my body. It's still a relief. Just to be more alive, to feel more alive and more 'mature' like my body has matured past these chemical induced infant and childhood stages. And that I'm out of that chemical induced torture room. Mostly out of that chemically induced torture room. I feel a bit like an army vetern now, having flash backs. Still the odd shooting pain. I like to think that maybe this time it's the nerves coming back online that I'm feeling. 

    I looked at my cream of wheat box. One serving does give you 80% of your days vitamin B12. I think that is what protected me from the real bad pins and needles in my feet. That does seem to be pretty common, three of the few people I know who've been through chemo have that. I don't. And I was on the stuff that gives it to you.

    Here is the other thing that seems to be coming back. My brain. I feel fog lifting. 

    Where am I at now? That is what I was going to do for today. Make a little assessment of where I'm at now. And I did go through and list off which things have got better and are getting rapidly better. But I forgot to list the big one. 

    It worked. My cancer appears to be gone. That of course was the point of all this. Killing cancer. And while we don't know what will be there microscopically. The cancer that was there, and big enough to start killing me in the not so distant future is essentially gone now. As far as we know there is no cancer in my body that is large enough to dectect on any of the pre-screening tests. At this moment I would pass a mammogram. I would probably pass a CT scan. I could start my life over as if I never knew I had cancer, as if this whole six months had not happened, and I would be able to go on for another what? A normal lifespan. There is a part of me that feels that way. That I could walk away now. And I would still have pretty much of a normal lifespan from here on out. 

    But that is all a bit false. A, the chemo itself has done damage to me, and I am at greater risk of getting new, and more aggressive other cancers than I was before. And there is a greater risk than I'm telling of this cancer starting up in a organ, an small, essential organ where if it grew to this size it would be killing me already. Breats are big, non-essential organs, a tumour can get quite big there without killing you, compared to say, the same tumour in your lungs, bone, brain or liver. Those are the places where this cancer could show up again. If that happens then basically I'm stage 4 and not likely to be cured. At that stage it will be just making me comfortable. All of those things might be happening right now. The beginnings. That changes the game considerably. And that is why the business of surgery to get rid of any stray cells and also know more about the cancer that is/was there is important. That will help. 

    And that's also why the radiation will help too. Just to keep any stray cells from getting loose and starting up shop someplace else. So. I get it. I still think this treatment plan is the right thing to do. And I will go through with the rest of it. And optimistically, when I get to the end of this, with whatever additional permanent damage I pick up from the surgery and the radiation that will be it. That will be the way I get to live for the rest of my life. 

    And I shouldn't be so down about even the metastis. My brother’s colon cancer showed up in his lung. And look at him, five years out with no new cancer. Damaged, yes. Not fully functioning, yes. Still living his life the way he wants to live it? Yes. His life now is not much different from the life he had before. So. Take heart. Especially because we probably do have related cancers. My will probably act like his. These are not the fast, kill you in a few months varieties. 

    So. Here I am. Celebrating the end of chemo. Yes, they lied, I am not better now.  There are lingering effects. Some of these effects may be permanent. And perhaps they will the kind of thing that you just get used to, the kind of minor disability that you just get used to and you carry on without having to change your life very much. That is where I am right now. Even if the side effects stayed exactly like this, I could get back to my old life from here and carry on pretty much unchanged. I can see my way through to that. So. I feel like yes. I made it. 

    And I am already starting to have the adventures of coming back to life. Yesterday turned into a bit of a comedy of errors for me. 

    I was feeling better. The day was nice and I made a bigger to do list, and I tried to do more. And I tried to do too much. More things can go wrong when you do that. Especially if you haven't done much for six months. How shall I describe this, is this a bit of the pre-teen stage? Or even the teen-age stage where you start getting out in the world and doing adult things on your own for the first time? Perhaps. 

    I was set to do quite a bit actually when I look at it. It was an almost 'normal' day for me. And it was too much. 

    Things started to go wrong. I will say that the wig moment was exactly like a teenage experience, out in public doing a new adult thing and having it go bad. I wore the wig to the laundry mat, back and forth, no problem. I wore it most of yesterday and into the evening no problem. And it was even fairly comfortable the whole time too. I was starting to forget that I was wearing it. That's how comfortable and confident I felt. I think it looks 'wiggy' and not that great but I was okay with that because it makes George feel more comfortable. Then I went out for one last trip to get groceries.

    There was a strong wind blowing just outside the grocery store and I had to duck my head facing into the wind much as you do with an umbrella on a rainy, windy day. In the grocery store I did start to have a feeling that the wig was lifting off a bit. And I did try to re-set it once, but realized that I was in a public space, and re-arranging your hairline is not the same thing as re-arranging your toque. It looks weird. People get a bit creeped out when you grab your bangs and move them down an inch. It felt like it was more solid though, so I continued on without thinking. 

    I should've been thinking. The same wind hit me sideways on the way home. It took that wig right off my head and blew it onto the road. I saw it there skittering away like some kind of stray cat, a wig moving around on the road looks like a cat or a big fat squirrel. And then I realized that was it, that was the only wig I had, my free wig and I went after it. With my bald head. Worse than bald actually, I had still had the underneath wig cap on, which is basically a bit of panty hose on your head. Carrying a full heavy bag over my shoulder, that had a bottle of wine in it -breakable bottle of wine. Chasing this wig/animal round the middle of a busy street. Luckily it was between lights, so while there was this army of cars watching me, they were still behind a red light when I was out there making an fool of myself. That was the fastest I have moved all winter. Probably the most of my own adrenline that I pumped too. And every time I reached down to grab the wig, the wine bottle clinked on the pavement and I was sure it would break adding a whole wino aspect to my disgrace. 

    It took two futile grabs before I finally caught that wig and made it back to the curb. Then what? I did not want to stand there putting my wig back on, in front of all the people who had stopped to watch me. Plus I was hampered by the big heavy sack of groceries. Luckily I was wearing a hoodie. I was able to just pull the hoodie up, and I was glad of the hoodie, now I was in disguise. I shoved the wig into the sack of groceries and make it the rest of the way home without further incident. 

    And luckily, I took that laughter workshop only the day before and was reminded to laugh at myself first. That is the first step in learning the laughing lifestyle. Laugh at yourself. Point at yourself and laugh is the exercise. Yes, I was seeing myself from a drone/selfie point of view as I was scurrying around in middle of that busy street, chasing the wig that I swear really was like trying to catch a puppy or kitten that got loose in the street. Crashing that wine bottle into the pavement without actually breaking it. Funny me. 

    That was a teenage mistake, being out in the world in a new scenario (wearing a wig on a bald head with nothing to anchor it to, cheap loose fitting wig so the wind can get under it and lift it up, a longer wig so there is more material there to catch the wind too) I don't attribute it to any chemo brain effect. That was a learning curve issue and I'm actually kind've pleased that I was able to have a fast reaction, ramp up some courage and save that wig without risking my own neck. Kind've pleased with myself about that one. 

    The next one was not so good. I was cooking. I was cooking two new recipes and it was actually going pretty good. I did them in the wrong order, and would do that differently next time, but my assessment of the potential of the recipes and their suitabilty for dinner on one of these first warm days was just perfect. I made roasted pork tenderloin in a maple/chipotle sauce and tagelilli with lemon cream sauce and fresh asperagus. It is a perfect early spring dinner. It tastes like spring with the asperagus and maple. And you slice the asperagus into little rounds, living the tips as tips and only blanche them so they are fresh and have a slight bite to them, not quite raw. Delicious in the lemon cream sauce. The lemon cream sauce recipe was fantastic. And the maple/chipotle was great on the pork. I started the pasta dish first. But I should've done the pork first, got it into the oven, and then done the pasta while the pork baked. It was fine, it's a small change, but that is definately a meal that I would make again. So worth noting and remembering. 

    While I was cooking, in the midst of tasting things and going wow, this is actually really good, and wow I can taste it too, the doorbell rang. 

    It was the fellow from the fish store downstairs. My husband came back upstairs in a huff, panic. The bathroom sink sink was overflowing. I was hand washing my little grey toque earlier in the afternoon, I left the toque was soaking, the tap drips. The sink overflowed and water ran down through the floor to the fish store. That was a disaster. I felt bad. 

    And how should I take that one. Chemo brain? I did completely forget that I'd started washing that toque. I forgot it completely, though as soon as we realized there was flooding then I did remember the toque. So I forgot, but I remembered again. It didn't stay forgotten. 

    Chemo brain? Or just coming back from a long illness and doing too many things at the same time compared to only even just a week ago. 

    Chemo brain? Or that's the kind of thing that we've actually been doing in this apartment all along, periodically someone starts a sink running, starts doing something else and the sink overflows. That has happened many times over the years. It's happened when we were younger, still in our primes, and it's happened before chemo. 

    So. I have decided to take this as just one of those things. Chemo related in that I am coming back from not being able to do very much only doing one thing at a time, to juggling more different activities and thus dropping the ball once in a while. 

    I would not have imagined that these mess-ups would be signs of recovery. I did not picture that this is what I would be writing on my end of chemo, see where we are assessment of this part of the treatment. I'm feeling better, I'm doing more, I'm doing some completely new things as a direct result of the chemo, I'm messing up again. I haven't messed up like this for a long time. I forgot how it feels to do things and mess up. That's because I haven't done things for a long time. I'm starting to do things again and I've discovered messing up again. Wahoo, who would've thought?

    I did picture the restless part, and the boredom part. But I did not think it would lead so naturally into the mess up part. Of course it would. I should've known. 

    And here is the other thing. Somehow I imagined that I would have this day free, free to be me. All day, no chemo to go to, no chemo to recover from, take a celebratory day. But that is also not to be. I have responsibilities again. It’s tax season. I have to get my tax stuff ready by tomorrow. That means I have to do it today. And I took down all the towels and faceclothes to do household laundry yesterday but couldn't carry the weight of both that and my clothes laundry, we need clean towels. So I have to do that today too. It's not going to be a day off. It's going to be a day of back to my old life. It's going to be a day of doing household work and income tax preparation. Perhaps that is the way to celebrate. It's a day of taking care of me in that way. Not naps and baby food so much as income tax and laundry. And a bit of gardening. I'd like to put my geraniums actually up on the balcony ledge and hang the big fake wasp nest. What can I say, these are all non-cancer things. It can be a total non-cancer day. A busy full day, free from cancer activities and cancer thought. I can give myself a day like that for my celebratory treat. 

    And of course thank you letters, spend a bit of time in gratitude. I think I might do them tomorrow instead. That's back to cancer thinking. 

    I promised myself that I would do a bit of a chemo debrief on this day, that I'd write down what I'd do again, and what I would do different, and where I am at now at this point three weeks after the end of the last chemo. I think I've already done the last part. But what about the first two? 

    What I would do again:

    Drink plenty of fluids. Take that rule of drinking one cup of fluids each hour while you're awake, especially in the first few days of the most chemo and most drugs in your body seriously. I think it did make a big difference in reducing side effects, some of which I think might be dehydration like a hangover, and protecting your organs like your kidneys, liver etc helping them deal with all the dramatic stuff that's going on in your body at the cellular level. It will really help your body deal with all of the toxic stuff that is happening to it. 

    Get up, bathed and get dressed. Every day. Even if it takes you until noon to do  it. Even if you are just going to wear sweatpants and a t-shirt so you can have a comfortable nap right away afterwards. As much as you can, as hard as it might be. Get up, bathed and dressed. You will feel better for it. Mentally and physically

    Walk. Every day. Outside. Walk slow enough that you don't get out of breath or dizzy. Even if you can only get out to the sidewalk. Even if you have to so slowly that it takes you 10 minutes to get out to the sidewalk and then you have to hang onto lamp post for a few minutes before you can turn around and walk back. Do it. You will feel better for it. Mentally and physically. 

    Physical details matter. Stretchy waste bands to accomodate weight gain/loss, and sudden naps. Sheets with a soft texture. Comfortable clothes with a soft texture. Dressed enough so that you're not embarassed if someone comes to the house or sees you outside on your walk, comfortable enough to have a good nap without getting changed. Soft towels. Soft tooth brushes. Good gentle cleansers. Good gentle lotions. 

    Social contact matters. Let people know what's going on, you can't expect them to act correctly if they don't know the situation. I found it easiest to send a short email first, then follow up with phone calls. It gave people a chance to react and accept the shock of it all and get into a better mental space before I talked to them. I think it would've been too hard, but maybe also really cathartic to talk to everybody and go through the shock of discovery with all of them. It was okay to phone close family and friends first, and then do the emails out to a wider range of people. Respond to offers of support. Ask for things that the people can do to help. I asked for knitted toques from my knitting friends. I asked neice and sister to send me adrenaline jolts when I was in the worst parts of the AC chemo. Whatever you need, ask for it. People want to help if they can. And be appreciative. Thank them. Let them know their support is appreciated. But don't be needy, angry and demanding at them. This is not their fault. They don't have to take responsibility for how you feel. I think I got it about right. I saw that people who got into the blogs and got support from strangers also got into trouble when they started to get to sick to maintain their blogs, and their followers got disappointed and angry. I also went into, I now promise nothing - no social engagements or contracts because I do not know if I will be able to keep them.  I think that was good. 

    What to do different:

    I would get on top of the logistics faster. You don't have a lot of time between a cancer diagnosis and the start of treatment. Your window for getting sick leave from your job, finding someone else to finish off your freelance projects, or making a plan for a reduced work load is small. Your window for getting medical insurances, government financial support that you have put in place is small, you need to get on that stuff right away, even if you are still in shock and don't really believe it's happening, even if there are waiting periods, get that stuff organized, dig out the paper work, find out what forms or certificates that you will need figured out and ready to go, start contacting the people involved and let them know it's coming down the pipeline. Because once treatment starts it all gets much harder. You have less time and you are too sick to do much when you do have time. There is a reason you can't work when you're on chemo. All this kind of medical paper work is like work. Do it as soon as you know what the treatment plan will be. The very next day. I waited too long, and then it all got longer on account of just being too fatigued and chemo sick to move it forward in a timely manner. Next time I would spring to life on all that stuff. 

    I would step away from freelance projects completely. Yes the documentary series was a good distraction a couple of times, but mostly it just tired me out. It depressed me. Maybe if the topic was something that was more uplifting, or if it was a good social interaction to do it. But working alone on a depressing topic was the pits. Not worth it.

    I would try to be physically closer to people that I love. There is a lot that you can do with facetime, skype, phone calls, text messages, emails. But none of that is the same as a good old fashioned hug, or seeing the look of love in someone's eyes, or a touch on the shoulder. Touch is important. I'm glad I have my husband. I'm glad I didn't go through this living alone. But it's a lot to put all of that on one person. So, I would try to be closer to the people that I love enough to touch, and they touch me. And I'd like to have a pet again for that too. A cat to sit on my lap and purr for me. A dog to lean against my leg and give me a big wave of empathy when I feel like I can hardly stand up. Living touch. I would pay more attention to that. 

    I would do even more to clean the apartment/house ahead of time. It's hard on you to sit there and look at greasy dust on the bathroom shelf when you know you should not be digging around in there stirring it up while you have immune issues. 

    I would get my teeth fixed and organized ahead of time. I went into this with dental work that needed to be done. There wasn't time this time. I made it through this round of chemo without mouth issues, but I was afraid of that the whole time, it would've been really bad. And next time I will be already reduced by what happened this time, so I can't count on making it through again. 

    Dispatched: April 17

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