May 15: Happy Ignorance

15 May 2019 6:51 AM | Contact Me (Administrator)

It makes no difference to the cancer if I know if it's dead or not. My knowledge at this point has zero effect on the cancer. Zero. Perhaps happy ignorance in the way to go for the moment? 

Wednesday morning. Yesterday we were on the edge of hurricane, downgraded to tropical storm, and had this odd cycle of sunny skies, then big wind, big black clouds, torrential rain - then sunny skies again. There were three or four cycles like that all day long. Life on the edge of a hurricane, downgraded to a tropical storm is like that. It all seems to have settled out today though and we seem to have a perfect blue sky kind of day ahead of us. Yippee! I will take it. 

Yesterday my sister and I did a few texts, she finally ordered those shoes she was thinking about the whole time she was here, and I had to go off to the store, pick them up, bring them home, package them for shipping, and then back to the post office to mail them. It wasn't a big deal. Yes, I did have a moment of thinking how much more sensible to have just bought the shoes while she was here and take them home with her instead of waiting until the day after she got home to phone in an order and have me mail them. Sheesh. Offends my whole producer, production manager, executive director career personality and sense of efficiency. But, it's my sister and this is not work, it's life. Life is the big story, work is just one part of it. Keep those proportions straight. 

Yesterday I did my own laundry for the first time since the surgery. It is interesting. Doing the exact same chore as I did all winter on chemo I am experiencing disability in a different way. When it was chemo the problem was getting there, carrying the weight of the laundry bag. I had to walk slowly to make it. I had to move slowly to get everything from one machine to the other so I wouldn't get dizzy or out of breath. There were times when I couldn't do it at all. My husband had to carry the weight of the laundry for me. I couldn't walk that far, I couldn't even walk to the end of the block if I had to carry a load of laundry too. But so long as I moved slowly and didn't add too much weight, I could do things, I could move smoothly and do things. I was over all weak. I was blurry and chronically nauseous. But I still could move normally. And the pain I had was intense, but brief and moved around. No I am much stronger. I can carry that load of laundry all by myself. But I felt it. I felt the extra pull on the surgery side of my body even though I had the laundry bag over the other shoulder.  I had lot's of energy to get there and back. But I had to be careful about how I moved as I loaded the machine. The surgery side of my body is stiff and less flexible. I prayed that the lower dryer would be free so I wouldn't have to lift the clothes over my head to a top dryer. It was like that. I was still disabled, but in a completely different way. It was a different work around to get the laundry done. I could do it. But it's a whole new kind of disability. 

Here is how it feels now. There are times when I'm sitting writing, or reading, or lying sleeping or watching tv and I forget about it completely. It's like it always was and I am like me. I'm feeling good enough now that I forget I'm bald, I forget I'm puffy from steroids, I forget that I ever had surgery and I am simply being me, at rest. Me from any time of my life, relaxing and being at rest. Then there are times when this new boob is this monstrosity on my chest, when I have pain in my arm and armpit, when I'm sick of it because it's the same old pain in the same old place. I'm just done. I want it to be over and healed and I'm just done that the stitches haven't all fallen off, that the tape hasn't all fallen off, that my movements are still restricted and my arm is not as strong as it was, and I still have to be careful with it, on account of those lymph nodes. I guess it's the coming back from those moments when I can forget it all, forget it all happened at all, that makes me so discouraged when I get reminded that it's not done yet. It is not even two weeks of a four to six weeks recovery. It simply takes more time than this. 

I am continuing to take extra strength painkillers as I need them. I took a couple yesterday. I'm staying away from the prescribed heavy dose ones, but I do take over the counter ones. I find that I appreciate the break from pain, and I do move more normally, and I think that's better. Though I pay attention to what my sister said about how hard they are on your liver. Though I also am reminded of all the chemo drugs that were injected into me, how much more deadly than any kind of over the counter painkiller they were - what an after thought regular painkiller liver damage must be after what my poor body has just been through. 

My hair is growing back at a great rate now. It is getting longer and thicker every day. Still snow white, still curly peach fuzz texture. I'm growing eyelashes. The top ones seem to be coming in straight, and even the lower ones are not too bad so far. I do use a bit of that gel to keep them down, but so far none of them are growing so that they poke straight into my eye like they did before they fell out. I feel stronger every single day. I didn't realize how weak I truly was until I started to come back and see the difference. I had given up on being able to walk at my old speed. But my son and sister both gave me that little push to do better, and it helped. I am doing better. I've continued it on my own. 

Today I'll do the mountain walk. And today I think I'll take it up that one extra notch. I'll walk up a little further before I take the path back down again. I'm going to go beyond the benches. Past where I can just sit down anytime I have to because there is always a bench nearby. I've done the old route so many times comfortably that I'm ready to move on a bit more. Slowly, gently. But still going forward all the time. That's the plan. 

I have done all the practical things for this week. I even sent off my sister’s shoes, that last minute, extra chore. All I have for the rest of the week is those two appointments. The cancer support group tonight, and the physiotherapist tomorrow. Other than that I can do whatever I like. I am comfortable. I am getting stronger every day. My finances are okay, I don't have to worry about them. I don't have extra money after nearly a year without a job, but I have enough money to do the things I really need to do. The plants are all okay for now. My husband is taking good care of the cooking, cleaning and garbage/recycling. All I have to do is keep on healing and getting better. Radiation coming up. I need to get as healed and strong as I can before that starts. That is really all I have to do. 

Yesterday was carrying weight, walking up and down those stairs, a lot. Both for laundry and for my sister’s shoe errands. Shorter more intense exercise. Today is going to be the longer mountain walk. That's a good balance. 

I had a good, but shorter nap yesterday. My naps have started to move down from being two hour naps to twenty minute naps. But then later in the evening I did have another nap on the couch after supper, and then I fell asleep on the couch before bed too. I am sleeping better at night. Another night in the same bed all night. I still sleep only on my left side, and on my back, but I'm moving around comfortably enough, and often enough that my back doesn't get so sore and I don't have to get up and walk around to stretch it out, and I don't have to sleep on the couch for the on-my-back part of the sleeping. That's a milestone. Day two of that milestone. 

Drinking plenty of fluids, walking and mild exercise every day, gradually building up my range of motion in my arm and chest, then gradually building up my strength, napping and sleeping and relaxing mentally and physically. Eating those proteins. That's the plan. That's my schedule for the next few weeks. And really enjoy these free, unscheduled, basically nothing to do days as much as I can. They won't last too much longer. Radiation will change all that. Even an easy radiation will be a daily chore, back and forth to the hospital. Every day. Not forever but everyday while it lasts. 

I started reading The Immortal Life of Henrietta Lacks yesterday. It is better written than The Year of Magical Thinking. But it hurts me more to read it. Because it is closer. I am reading about her life, and about her cancer treatment, knowing that she has really aggressive cancer cells that will become immortal themselves even as they kill her. I'm at the beginning days of her treatment. And it seems familiar. She knows something is wrong herself long before the doctors catch up with her in that knowledge. She is the one who finds the tumour with a bit of self examination in the bathtub, and then goes to get it confirmed. Sounds familiar, eh? 13 of 15 of us in the breast cancer group went through that type of diagnosis process ourselves. The radium treatment they gave her at the beginning sounds barbaric, but no more barbaric than my chemo treatment. And it seemed to be working at the beginning too. It's the radiation to make sure it doesn’t come back that is really making her sick. She starts off the radiation treatments being able to walk the couple of blocks to her cousins house and play cards with her until her husband picks her up at night, then she can't walk it any more, she gets too weak, she takes a cab those couple of blocks and when she gets there all she can do is sleep. She shows her cousin what's happening, her skin is burned from her breasts to her pelvis. That's what the radiation is doing to her. That's where I stopped reading last night. Of course it's depressing. Of course it sends a dark shadow over me, I am at that same magic moment after the first round of treatment, when it seemed like it was working, before the radiation starts. I feel terrible that she had the same moment as me when it seemed to all be working. And it wasn't. We know how her story ends. This cancer will kill her. And all that terrible radiation will be for nothing. I had to stop there. 

This was in 1951. This was my mother's cancer era. This was the same time that they did those radical masectemies and removed muscle as well as breasts. This was the same time that the technition failed to cover my mother properly and she got a double dose of radiation down the middle of her body. She had a tumours later on, big and slow growing, local, but still destructive tumours because they grew so big. A baseball in her brain, it took away her sense of smell and it gave her black outs where she became a child again. A basketball in her chest, left a hole there that would not heal, a wick coming out of her chest, a restrictive life with a nurse coming in every other day to change the dressing. My Dad killed himself one day when the nurse was upstairs with mom, changing that dressing. He did it then so she wouldn't be alone when it happened. The nurse said that when it happened it sounded like a door had fallen down, she didn't know it was a gunshot. Sawed off shotgun. The police confiscated it. Sawed off shot guns are illegal. You have to saw it off if you're going to shoot yourself in the head, otherwise your arms aren't long enough to reach the trigger. This Henrietta Lacks story takes me back to that time. Those times. I was born in 1952. 

Looking back I do wonder, where was their family support? Their friend support? None of us kids helped her full time after her surgery. Her sister never showed up either. On the other hand, Mom stepped out of the hospital and took the bus to work. How do you step in to help in that situation? How do you do it if you are the child of that kind of woman? But what about my Aunt? Where was she? And my father's sisters? Where were they? Mom's friends? Did she have any? The girls at work that she never saw outside of work? Do they count? Who were my mom's friends? She seems to have lost them over the years, she had cousins and friends when they were first married but they all fell away over time. They all started families of their own and that became their world. Dad had friends, but again they were his work friends, they were his canoe club friends. They were not friends who got involved with the rest of his life. They would not have showed up at the house offering to help. And those were different days too. Cancer was a shameful, secret, hidden disease. That too. 

Look at me now a generation later. A house full of flowers, a house full of cards, gifts of food and clothing. Emails, phone calls, and my son comes for a week, my sister comes for nearly two weeks, my brother will be coming. My other son will be coming. My grandkids will be coming. The Wellness Centre offers help to the point of annoyance. Of course in the end you still have to do it yourself, you are still alone in your own body, nobody can suffer for you, nobody can die for you. But it's still nice to feel the love. You still have to take that last step into death alone, but it doesn't mean you have to die unloved. 

Whence come these feeling of doom? Why am I so sure this is all just going to go south and I am going to start dying and that all that I've been through so far is just the beginning of something much worse. That I’ll look back on this moment and think it was the easy part, the last good days before it started to get really bad. Crap, I don't want to think that. I don't want to be there in my thinking. And there is no real reason for me to be there either. Stage 3. I guess that's one reason. That part is still sinking in. I flip between, just a lumpectomy and stage 3. And the reason that it's just a lumpectomy instead of the double mastectomies that all the celebrities are getting these days is that the horse is already out of the barn. No sense trying to lock those doors now. It's a whole body game now. That is why it was only a lumpectomy. Surgery doesn't really matter so much, except to take out the whole original mass and be able to really see what it is, was. Get that pathology. That was the real purpose of the surgery, not to stop the spread, the spread had already started. That is where I am at. 

That is the story of the ‘aggressive’ chemo. That is the story of the small surgery. And that is the story of the radiation. And the story of the daily pill that I'll start taking after all these other things quit killing my healthy cells along with the cancer cells. It will be another systemic treatment. It will affect my whole body. Enjoy this break while I have it. This is why I have this darkness in me. This is why I don't feel so optimistic as I present myself to friends and family. This is serious. And it could start going south, badly at any time. The cancer can quit responding. The cancer can be something much different from what they thought at the beginning. This is a time of suspense. We don't know yet. We won’t know until the pathology comes through. The lab is working on it right now. It's happening. 

And some things I could know right away. I could probably go to the hospital after my physiotherapy tomorrow. I could probably ask for my blood tests, and I could ask for the biopsy of the lymph nodes report. That is there. I am entitled to have those reports. I could get them right now. Well tomorrow. I could plan to go and get them tomorrow. Something to think about. I have to go to the real, actual source. I should probably also pick up the original biopsy and ultra sound too while I'm at it. Or I can continue to just heal, and enjoy my time off cancer - mostly. Just pretend I'm free from worry for the moment. Pretend it really is all working just as expected until they tell me it's  not. That is another option. 

It makes no difference to the cancer if I know if it's dead or not. My knowledge at this point has zero effect. Zero. Perhaps happy ignorance in the way to go for the moment? 

Dispatched: May 15

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