For me it was one kind of fatigue when I was on the AC every three weeks. Then a different kind've fatigue with the Taxol, and now more of a plain old tired fatigue as my body works overtime to rebuild those bonus things like hair and fingernails that I could live without if I had to, and to rebuild tissue after the surgery trauma too, at the same time. Of course I'm fatigued.
Saturday morning, sunny and chilly. There was even a frost warning last night. I don't worry about my balcony plants, we're not in a low lying area up here on the third floor. It was grey windy and chilly yesterday, but now it's bright and sunny, but cold.
Yesterday I did not go to the Botanical Gardens. I even put it on my Facebook page, the great gardening weekend started yesterday, and the lilac forest is in full bloom right now. I was going to go, but I did not go.
I did do my exercises, I did do my range of motion twice. I did eat good meals. I rode the stationary bike at a good clip for twenty minutes. I wrote in my journal. I read my online newspapers. I knit on the granddaughter sweater. I did get the blood pressure medication information faxed to Dr. M, and I got another bottle of lotion. I picked up some supplies from the grocery store.
But I didn't go to the Botanical Gardens. By the time I did my exercises and everything else it was noon. I was hungry and had lunch. I looked for my metro pass and by the time I found it I realized I was really tired. So I had a moment.
On the one hand I did really want to get back into life and have an excursion to the Botanical Gardens on a Friday afternoon. And just smell the lilac forest. And I did post it on my Facebook page that I was going to do this. So that made it feel more like an obligation. On the other hand I have made a promise to myself that through all of this I will always choose health. My health is my priority. When in doubt make the decision that will contribute to your health. That meant the nap. My body was telling me I needed to nap. I missed the nap the day before. I woke up early. I am healing from surgery. Through Dr. M's eyes I now see that the colour of that boob is not from the orange dye, that poor boob is one giant, deep bruise. There was a lot of blood in there, particularly in certain spots and my body has to heal from all that, and also clear it out, clear out all that debris. The stitches on the surface is the least of it. And of course there is also the gap/hole where my lymph nodes used to be that he felt as well and that has to fill in too. Plus there are the millions of hairs all over my body that are now growing at a ridiculous rate. I never realized it before, how much hair a person has, even it a lot of it is pale and soft - we are really just covered in hair. I was really tired.
And it was quiet. My husband was away at a camera workshop. So I lay down and had a nap. After about twenty minutes I woke up and thought, okay, I'll just take a bit of time to wake up and then head out to the Botanical Gardens. This was the old me talking. The me from when I had full health and used to still take naps because I was working super hard, and burning the candle at both ends. A twenty minute nap during the day could really keep you going through a twelve to fifteen hour work day. I chatted with my son a bit on Skype. My granddaughter is having her teeth pulled next Tuesday. Her birthday is next Thursday. A big week coming up for her. I'll order flowers and a card with cash money for her on Monday. My big expense for this month. And my husbands’s birthday coming up too. Expensive month.
I was still tired, I didn't feel right, so I went back into the bedroom and lay down for a bit more nap. This time I slept really deeply until nearly 4 pm. Clearly I needed it. That was yesterday. And I still didn't feel all that great. My muscles were stiff and tired. I was tired and blah. Perhaps I am over doing the exercise? I'm not doing that much. Walking for an hour every other day. Riding a stationary bike for twenty minutes on the non-walk days. Doing the core exercises, that adds up to forty-five minutes on the non-mountain walking day. But it does seem to be taking it out of me. I was doing okay so long as I was really faithful about that afternoon nap. Missed it for one day and it really set me back the next day. What shall I do?
I was disappointed to miss the Botanical Garden Friday play hooky day excursion, but it's not the end of the world. I can try again next week. I have every day off work now, there is no reason to restrict myself to Friday hooky days anymore.
Given that health is my priority, what should I do?
Today is a beautiful morning. I do want to do my mountain walk. Tomorrow was going to be my rest day anyway. And I will keep it that way. No exercise, no mountain walk tomorrow. Give the old body a chance to recover. Stick with the Sunday off and see if that does the trick, that I build up enough to be able to do six days of exercise with one day off? Tuesday, CT scan day. Let's take that as a day off exercise. And then surround it with gentle exercise. A walk the day before, and a walk the day after. I think that's a wise solution. And then go back to being more strict about the nap. Take that nap every single day. I need it. I am still recovering, not only from the surgery but also from the chemo too. There are layers and layers of recovery going on here and I want to get as strong and healed up as I can before the radiation starts.
And here this is a happy little voice in my head, we have already started to talk more in terms of preventing recurrence than getting rid of cancer. That's the way the radiologist presented it, changing my odds of a recurrence from 30% to 8%. At the cost of increasing my odds of getting another kind of cancer from 0% to 1%. But what does that mean really. The thing is I will die horribly if I get that other kind of cancer, it’s aggressive and terrible. And it will probably just be a second bigger surgery if I get a recurrence in my breast. So you have to weigh it that way too. Although the numbers make it look like a clear, good, obvious choice, the reality of the two options is quite different. If they give me less radiation, the least amount that will still work, then I will have less chance of all the side effects including that second cancer. Including lymphedema. I think that is the best I can go for now. But in all this there is the happy little voice. Preventing recurrence. This conversation has turned to preventing recurrence. Preventing recurrence. Yes. I'm ready to be there. Little happy dance in me.
In the meantime. Let's get better. Take my walk as planned today. It's too nice to miss it even if I am a bit wiped. Have a good nap. Don't care so much about the cleaning and plants right now. Perhaps vacuum my office rug, it is pretty gross. That's enough. The range of motion exercises. The 'kind' bath. I do wash my arm, and my armpit, and my poor breast. I wash them gently, I feel them from the outside and I listen to those deep pains, those odd deep, vein type pains and I sooth them, I try to keep my armpit, my arm and my breast 'with me' part of my body as they heal. My bath takes longer because I do this. My morning routine takes longer.
There are these smaller, but I think really important things that I'm doing too. The kind touch bath moments. The range of motion exercises. I dread them a bit. There is discomfort for sure, and the potential for actual pain when I do both of these things. And it's frightening to feel the damage. That too.
I understand how my mother just disassociated from her lack of breast and that arm of hers. She never did the exercises, she simply ignored the space where her breast, and her chest muscle used to be. Would it have been different if she'd kept them with her in her mind too? If she had touched her own body and gently massaged the skin would that skin have still grown onto the bone and necessitated that horrible, painful skin graft, that led to her drinking problem? Would she at least have known it was going wrong in time to get a smaller graft and better treatment? If she had done the lymphedema exercises that they gave her, more than once or twice, she quit because they 'hurt' they weren't comfortable, might she have saved that arm and saved herself from a lot of pain and obvious public disfigurement. She was so vain, it must have bothered her a lot, aside from the physical discomfort, the disfigurement of that huge arm. She did not do any of that. Not at all. So these are small things in my daily routine. That gentle just feel the area type of massage, feel it with my fingertips, listen to what it's saying to me. And the range of motion exercises. Even if they feel uncomfortable. They work. The rest of my day is better for them. I feel normal mobility coming back each day, more and more I discover I'm forgetting that I had surgery, I turn and move in bed, I roll over I get up more normally all the time.
And I'm glad I've been doing this. It helped with the radiologist and that exam. I was comfortable to move around and be examined. I don't have my full range of motion back, but it was good enough for the exam. And my body did not freak out over being touched gently. I've already been doing it myself. It was okay. And that helps them doing a better exam if I'm not 'jumping away' and tensing up.
And I remember doing something similar with Moose after his leg surgeries. After the surgeries where they cut his knee joint and changed the angle. I remember that it did seem to me that he was disassociated from that leg. I remember that I started to stroke him gently, very gently, but firmly also from the top of his head by his ears, across his back and down through that leg, including the leg in the story of his body that I was making with my hands. Including the leg as a part of his body. I stopped short of his paws because he always hated people touching his paws. But I still remember the look of surprise when I first did that, when my hand first touched that leg after the surgery. And he let me. It was like he did discover/feel the leg and it was part of him, and it was okay. I did that every day after that as he was healing, I stroked him from his head down through his leg and he liked it. And yes, I think it did make a difference in how well he adapted to the 'new' leg, and recovered from the surgery. Not really physiotherapy just a simple touch. I think it's important. I know it's important.
So these are my priorities now. It's back to pretty simple priorities again even if I am getting stronger and recovering. Get up, have a bath, do that gentle massage, check on how things are going in the surgery area with my fingers as well as my mind. But also the whole body, keep it in perspective. I use bath time for that now. Even if I discover soreness and discomfort, just keep at it, keep those surgery parts of your body with you. Do the range of motion exercises. Same thing, I feel that tightness. I pull against the tightness and it doesn't feel better right then. But I do feel better every day. And I've seen what can happen if you don't do this. So. I know how much it's working even if it doesn't seem immediate. And yes. I am getting my arm straight over my head now, almost straight, and I couldn't do that at all before, the discomfort started much further down. It is working. And I think doing the muscle things are helping to keep the lymph fluid moving correctly, and I'm teaching my lymph system how to recover and live, work around those missing lymph nodes. That's my theory and I'm sticking to it.
And then comes the bigger exercise. That's the stationary bike and the core exercises and the mountain walk. Those things stimulate my big pelvic and leg bones to make blood. They increase my body's circulation which sends all that nice new blood around to clear away dead debris and deliver building materials for new growth - like surgery recovery, like all this hair I'm growing. That's all good, and important. And the walking, and I do believe this, also stimulates my 'will to live' keep up with the pack, herd, tribe, family. A deep mammal instinct. Walking and will to live. Plus the stationary bike is long enough for some endorphins to kick in now too, and that feels good, and is addictive and can contribute to will to live too. So that's a priority as well. And the other bit of mental health simply from being outside in a bit of nature, in fresh air. All good. All priorities. I just have to be careful not to over do it. Just as I have to be careful not to rub too hard with the self-massage and hurt myself, or push too hard with the range of motion exercises. This is about finding that right balance of moving forward, doing more each day, without going too far too fast and injuring yourself. You are really the only person who knows exactly where that tipping/balance point is.
And then comes the nap. It takes energy to do all this re-growth, this debris removal, and this increased exercise program. I still need my nap. It's not chemo fatigue this time. Right now it's old fashioned fatigue from exercise. A nap helps. Resting helps. I'm tired because my body is doing more and working hard. It is more like I being pregnant. Your body is just busy doing a whole lot more stuff. You need to give it time to do that extra physical work. Naps and sleep are good times for your body to be rebuilding, and creating all that new growth. I am still going to bed at 10pm every night. I wake up around 5am in the morning and I have to have my afternoon nap. And sometimes I still have an early evening nap too. In between I have way more strength and energy. I can walk for an hour instead of to the end of the street and back, I can ride the stationary bike, I can do those core exercises. But I still need to sleep a lot. Now I am honestly tired. I can feel that. It feels like just plain tired. And sleep does help it.
So it's still fatigue, and I still sleep a lot. That part is the same. But the reasons and results are all different. Interesting. And the in-between, not sleeping part is so different. This is all happening in a way that I understand now. It's like getting back your strength after a big illness, or after a long period of no exercise and getting back in shape. This is more familiar. I get how to manage this.
Yes I do think some of this is still chemo. All this hair growth I think it contributes to exhaustion. It's exhausting just looking at it! I'm so hairy, there is so much hair, everywhere on the human body. I am like a child growing. I haven't had to do this much growing since I was a child, or since I was pregnant. And all of that was a long time ago. I get it that I need to sleep more the way I did when I was a child, the way I did when I was pregnant too. And how I wished I could sleep more after the babies were born too! I get it. It's not 'normal' for someone my age to go through so much growth, but essentially this part is not that different from being a child or being pregnant. It has a familiar quality. I know it will settle down once my hair all comes back, once my new nails all grow in, once my bones get strong again, once my gut cells get back to their old selves, once this surgery damage is dealt with.
My gut feels the most recovered. It stayed pretty good through out. No real diarrehea, and no real constipation. But it wasn't until I had my first, 'perfect poo' not that long after I finished the last of the surgery drugs that I realized that it hadn't actually been 'normal' the whole time either. I had soft textured poo during chemo that was easy to live with, but it wasn't 'normal' poo either. It was soft and this almost grey colour the whole time no matter what I ate. I was just thankful it wasn't something bad. And I thought it was still normal compared to what I heard was going on with chemo patients all round me. But when I had more first 'normal' poo with a firmer texture and more colour I could see the difference right away. And now I always have a normal poo, and it's regular, and the colour varies depending on what I've been eating. It's not just this uniformly greyish coloured, soft thing. I've been braver about eating more and more normal foods since then. Soft cheeses, fresh greens, berries, pomegranete juice yesterday. That's what I bought, it was on the chemo no, no list. But I bought it yesterday. Chemo is done now.
But I can see where my body still has a lot to do to recover from this. And I can see where and how to help it along, by giving it enough calories and nutrients, enough exercise to build blood and promote circulation, and enough rest to actually do the extra work needed. I can see where this part of the fatigue could last for a while now as I recover, and that's without any additional problems cropping up.
So I am giving myself a break. There are none of the other things that I want to do with my life in either the big picture, or the little picture of daily life that I will be able to do without a body. Period. So whenever it's an either/or choice right now I have to choose in favour of my body. Period.
This is more than I bargained for, this is more than I expected, or was led to expect at the beginning. I am down further than I imagined would happen, and I'm one of the lucky ones who sailed through everything with miserable side effects, but no serious complications. And a good outcome, good results. It's still a lot of damage, and I know that it will still take a lot of time to recover and rebuild. Way, way more than I expected.
But none of this is weirdly mysterious either. It all makes sense. Every flavour of fatigue that I've been through makes sense. It was probably all to be expected. Each in it's own season, each with it's own cause. I think having gone through it myself I could almost predict this for other people. I don't think it's all been especially unique to me.
And here is the thing, I noticed there are gaps in what the professions know and do. It's like they've really nailed it in some ways. They stopped the taxol at exactly the moment when one more dose would have been too much. They gave me as much as I could stand, as much cancer killing as I could stand and still recover while the cancer stayed dead. And they are on top of it with the after surgery physiotherapy too, the after surgery, get me ready for radiation. This seems to be a detail that did not exist in my mother's time that they've really nailed. And I think the diet advice has improved too, but is still not perfect. But the fatigue part, while acknowledged still seems so mysterious to the healthcare providers. Is it because of the different flavours of ‘fatigue’ ? It’s not just one thing. Perhaps that's it.
For me it was one kind of fatigue when I was on the AC every three weeks. Then a different kind've fatigue with the taxol, and now more of a plain old fatigue as my body works overtime to rebuild those bonus things like hair that I could live without if I had to, and to rebuild tissue after the surgery trauma too, at the same time. Of course I'm fatigued. And I guess it's still not the old fashioned, grown up, adult, just too much work, or staying up too late too many nights in a row fatigue. This is little kid growing fatigue, or even teenager growth spurt and changing fatigue. Your body is busy doing it’s own thing. That takes energy. That's what this part of the fatigue feels like now. And I expect it to feel more or less this way right up until all this regrowth is done. That's only realistic and reasonable.
And that will be a while. My nails are only part way there. My hair is still this fuzz cap, there's lot's of room for growth there. And these are just the things I can see. My boob. Plus there are the bones, and the gut, all that needs to grow back and get stronger and established too.
So. Give myself a break.
And yes, it does mean a bit of a re-plan for my immediate future. It's not just the Botanical Gardens. There will be a lot of things I won't be able to do for a while. And yes, this is a peek at the time after radiation when I start to really recover. This is a bit of a lesson on how to plan for that time. Right now I'm recovering as best I can, but I know my window is limited four to six weeks, and then we are in it with the radiation. Recovering and being damaged all at the same time, it will be like the surgery I imagine. Some of these full body recoveries will continue. Hair on my head, but it will take extra energy to deal with the new damage too. It will set me back. But not all the way back. Nothing will create that 'full body damage' backwards that the chemo did. That part will keep recovering and going forward around these site specific injuries like surgery and radiation. I get that too. But I get where the 'site' could get pretty miserable too. It won't be all the way recovered from one thing when the next thing hits it.
Yes, my mission is to get this 'site' healthy and mobile, and working as best I can before it gets hit again. More damage on top of the damage that's already there. Let’s try to reduce the damage that’s already there by the time that next step starts. Keep nurturing it through the whole process as well. Keep that part of my body with me, even if it's painful. That's the big plan.
But as I think of the next few months I realize that this will go on a lot longer than I thought. First off just technically. The radiation won't start until the end of June. I imagined that it would start at the beginning of June, one month after the surgery. I did not know that one month meant the start of talking to the radiologist. And then it would be a month after that, and then two more weeks. So in fact it might not be until mid-July that the actual radiation begins. Then it will be four to six weeks from that time. So that is mid-July until the end of August. And then a month to recover from that. And now I know they mean it. Now I know that I will lose skin. The radiation will kill developing skin cells just the way it kills developing cancer cells. It kills all developing cells. Not just the fast growing ones. All of them. That is why it's confined to a smaller area. I won't grow new skin. My old skin will still die off at it's normal rate but I won't grow new skin. We'll play that slightly different game of risk with death and permanent damage. So, it won't be a macho thing of when I think I will feel recovered from the radiation. It is simply the amount of time for new skin cells to grow and be plentiful enough to actually start doing their skin job of protecting the inside of my body. So it will take that long to recover. Period. I get it. Now we are talking mid-September to the end of mid-October, and that's in the best case, if all goes well and there are not additional complications. And that is not the time to full recovery. That is the time to starting to full recovery. That is how long I have to wait until I can start full recovery. Exactly one year after the first chemo treatment. The whole process actually takes a full year.
So now I start to get it. Now I see the lay of the land.
I would say, no summer holidays for us this year.
I should enjoy this break and take advantage of any mini-holiday moment that I can get. Yes, I should go to Camp Comfort if I can, make a huge effort to have that bit of cottage time. And any day trips too. From here until the radiation starts do as much of that as I can. And even in the first weeks of radiation while I still have good skin on that boob. Get out and about as much as I can then. I expect there will be about a month or so of sheer miserableness. That'll be the last few weeks of radiation and the first few weeks of recovery afterwards. It will be some flavour of miserable for sure. These guys have been honest about the dangerous side effects, and yes they describe the other ones too, but they do it without really telling you just how miserable it's going to be. You have to read between the lines. I read between the lines. No bra, soft camis instead if you must have anything, to go out in public. Reading between the lines I understand that part as lying around topless because everything hurts that tender area where there is not enough skin to protect you. Air drying your boob and armpit instead of being able to use a towel. I won't be going swimming even if my immunity is okay. I won't be going out and socializing either. Perhaps four to six weeks of life like that. ‘sunburned'. Perhaps blisters even. And I'll have a 'tan' afterwards that could last up to a year. So. Now we are talking next August or September, two years to basic recovery. That's how long we are talking for anything like a full recovery. And that is if all goes well. Cancer is killed. And doesn't come back right away. No complications.
Here are the questions that arise from this new assessment of my health future.
Can I really go back to my office job? They aren't expecting me until the fall in any case, they won't have enough money to pay someone until then. But could I go back, and do it, and run a future conference, it looks like next spring? Could I work that hard? That soon. And perhaps even more to the point. Do I want to?
Can I do the Ironworkers TV series? It's extra money. But I won't really be available until the fall. On the other hand, there may not be very much to do, my young directors are getting pretty good on their own, they can mostly do their own story making now. It will only be the beginning directors who might need help. I’m not as needed as a mentor. And do I want to?
Realistically. If I keep going with the tv scripts, and if I go back to my office job then I will not be able to do that much for my further future plans until this time next year. I don't want this cancer part of my life to drag on too long. The Wellness Centre said two years. They like you to be done with all the personal recovery by two years after diagnosis, as a general rule of thumb.
I don't have to decide this minute. It is a bit of a juggling act. Yes. I want the extra money. I'll be sixty-three this summer, I can expect to work for two more years even if year one is a slow year and I don't make much money. I like those people. I want to continue to develop those relationships. But I also really want to get moving on this next phase too. So. Things to think about.
I don't have to decide this minute. Why not? I am still waiting for key information.
The main bit of information that we can know, and will know soon is the pathology reports from the surgery, and CT scan. We can know that in two weeks. I will make my decisions differently based on that. If I am clear of cancer, and especially if there is the option of a partial instead of full breast radiation, then that's one thing. If there are signs of potential cancer in the CT scan, or if there is cancer in the margins of the surgery, or if this cancer is more aggressive than they thought originally. Then I will make a different plan. That plan will be based on the expectation of ongoing treatments, severe treatments and a serious chance of both recurrence, metastisis, and second cancers as a result of the treatments. That's a whole different ballgame.
If the news is, as I expect/hope that the cancer is really gone from the lymph nodes, that it is really gone from the tissue they removed, or even that they got a good margin on that tissue, and that it does not appear to be anywhere else, then I will go ahead with this one more year of work, at least the script work, and maybe even office job depending.
If it's something else, then that will be another story, depending on how bad that something else turns out to be. Soon. We'll know soon.
Dispatched: May 25