I believed that the end of cancer, and treatment and all that debilitating sickness was going to be now. Today. And today is nothing. I am certainly not recovered from the chemo. Promise from the doctor insurance form - not kept. And not only that, I may never recover from the chemo. Correction. For sure I will never recover from the chemo. I will always be reduced, and I will be at greater risk for further more deadly cancers. And I will never recover from the surgery either. My boob will settle down, but I will always be at risk for lymphedema. And the chopped off parts won’t grow back, what’s gone is gone. I have been set back in a way that will affect me for the rest of my life now. And there is no guarantee that I still won't get more cancer either. So. Today is not the end. It's marked in my calendar. I put it in there last fall. But it's not really the end.
Today is the day I marked down in my calendar. Today was the happy day when not only would treatment be over, but all the chemo side effects would be over too, and I would be ready to go to my old office job conference, and host a thank you party for all my fans and supporters. I went through a lot of the early chemo feeling like today was a long way off, but also that today was real. That I would be feeling like my old self, and able to take up the reins of my old life today. Beginning of June. That's what it said on one of my medical forms, expected recovery, June 2019. Prognosis, excellent for a full recovery. And expected day of recovery beginning of June. Dr. P wrote that. And it made me really happy and encouraged for a long time. It gave me an actual get better date, and a good prognosis for it too. And I see that was part of why I felt like I needed to keep cleaning the house, needed to keep up with work, how I needed to keep a regular schedule, so I wouldn't be too far behind when this day came. This very real, beginning of June, Monday morning. Back to work, back to your old life date. What was he thinking? Where did he get this date from?
He calculated through the chemo at an on schedule rate, then allowed the four to six weeks for surgery and four weeks after that for test results? Was that the methodology here? That calculation does not include radiation at all even though that was part of the treatment plan from the beginning. Because I don't think you could work through radiation side effects or not. It's every single week day, by the time you do the traveling and spend time in the waiting room, and then getting dressed and undressed, by the time you do all that there is no way that anybody could realistically be working full time as well. This is even more disruptive than the Taxol. Or the AC. Technically speaking. Simply in the number of hours it takes out of your day, Monday to Friday, every single day. We don't know yet where we fare on the debility illness level of this one.
I guess this is partly how I had the idea that radiation must be this, "bit of light" radiation would be something they just zapped me with, once, in the surgery room. I would barely notice it. They do the surgery, give me a light zap of radiation to kill any loose surviving cancer cells and then sew me up. This June deadline is what gave me that idea. Could I go back to work today? If I didn't have radiation coming up, if this really was the end, could I go back to work today?
My eyelids are still a mess, but I could work with them like this. My nails are threatening to fall off and even my husband sees the damage now, but I could go to work like this. I still get tired and need a short nap in the afternoons, but I could go back to work like this. My brain is still a bit fuzzy, but I could go back to work like this. Each symptom on it's own is not enough to keep me from being able to work. When you put them all together that's more of a problem. And when you note that these are not like normal scratches and injuries that will take a few weeks to heal, that they will in fact be ongoing now for the next six months to a year. Then going back to work, even a work at home job starts to look harder. Could I go back to work, long term, like this day in and day out with all these symptoms happening at the same time. I could. If I had to I could. I would not be as good as I was, but I could be good enough to work. I would be tired all the time, I would make more mistakes, I would be distracted, I would be more prone to emotional outbursts on account of being tired, ill and just mentally not being able to handle work stress on top of cancer stress under those circumstances. But I could do it if I had to. But I would be running on auto pilot until I crashed. And if I looked back on it, it would all be a blur. So, also it depends on the kind of work too. I need to be really sharp, and really stable to do my job(s). That's the nature of the work I do, the nature of the niche that I've carved for myself work wise. So that would be a problem. And it's a small niche, you live and die in this business by your reputation. I couldn't screw up. I would lose work, and I wouldn't be able to get new work later on. So. I could do some kind of work, but not my main work.
And it's not an option anyway. I can't go back to work now because I need to go through this whole other stage of treatment. And get beat down again. And will need time to recover from that.
And that's at the best. That's the best case scenario. If they find microscopic cancer in my tests, or more aggressive cells still alive in my tumour, then I'm in for a whole other story, possible rounds of real treatment, not "light radiation". So for sure I wouldn't be able to go back to work.
So what does this mean? It means I have to go again to the disability insurance people, get another doctor form to explain the radiation and the radiation time frame. I have the form for that already. I will need to get a doctor to fill it out before the end of the month. The sooner the better. I can probably fill it out myself and just get Dr. P to sign it. He would do that. And I know enough about the radiology treatment plan that I could write it up as well as he could. Four weeks from May 21 until my next visit where they do all the scans and tattoo me. So June 21 for that visit, at the earliest. Then two weeks for the radiologist to come up with his treatment plan. So end of June. Treatment could actually start at the end of June. Six weeks of treatment. Until the middle of August. Then six weeks of healing (I'm an old lady) and that is when my follow appointment to assess the radiation. First of October. So, really, and realistically that is my go back to work date. That is the first date I will be okay to work again. And egads, look at that, we're all the way around to a full year. The first day of chemo was October 15.
October is my first realistic chance of starting the 'normal' life. Then it's three months to my next appointment if all that went well. That's January. Another appointment with the radiologist. Then at six months after radiation it's the handover back to Dr. P and I start the daily chemo pill. And who knows who often he will want to see me.
It's pretty depressing.
Is it better or worse that Dr. P wrote down that I would be done today? That I would be better today and it would all be over and behind me by now.
On the one hand it did give me a big boost during the chemo. It gave me a framework, and encouragement, and it was still severe enough for me to be more contentious about getting my insurance programs on the move and taking a medical leave from my office job. So practically speaking it was good. Past June, longer than six months is a long time to imagine being disabled when you are feeling good. It was enough to get me managing things correctly, but not so long it was overwhelming. That is why I kept up with the housework, and why I bullied through the treatment and kept myself walking. That is partly why I got into caring for myself more, and why I felt like it was okay to indulge myself in clothes, bedding, books. Temporary. I felt like I would be going back to work soon enough, I felt like I would start making money again. And as time went on, and I didn't feel so good, I felt like I could make a choice to perhaps retire and quit working altogether and just be broke for the rest of my life.
And now. Now I am basically not doing anything.
I thought the end of cancer, and treatment and all that debilitating sickness was going to be now. Today. I thought the end was going to be today. And today is nothing. I am certainly not recovered from the chemo. Promise not kept. And not only that, I may never recover from the chemo. Correction. For sure I will never recover from the chemo. I will always be reduced, and I will be at greater risk for further more deadly cancers. And I will never recover from the surgery either. My boob will settle down, but I will always be at risk for lymphedema. And the chopped off parts won’t grow back, what’s gone is gone. I have been set back. And I have been set back in a way that will affect me for the rest of my life now. And there is no guarantee that I still won't get more cancer either. So. Today is not the end. It's marked in my calendar. But it's not really the end.
Not everything you put in your calendar will come to pass.
And I have all these other things written down to start doing today. Beside the party, besides holding the party and then getting on a plane to head out west and spend time visiting my family, and then settling in at the ranch to bake for the ranch hands. That plan won't be happening now, not on that timeline. What else did I have written down. Oh yeah, get my teeth fixed. Get that done in case of a recurrence and the risk of further chemo. Get my eyes checked and new glasses and contacts. I was going to treat myself to this whole body overhaul. This early sixties over haul to get set up for the rest of my older life. And lose the weight wasn't even on that list because I hadn't gained on any extra weight yet when I made the list. I was a pretty good weight. I wasn't so worried about it. All of this was going to start today. That was in my calendar. End of chemo effects. And this whole list of things to start doing.
Well now I know better. Last day of dangerous chemo immunity issues. That's it. Still recovering from surgery. Still need to stretch my arm every day, twice a day. Still worried about lymphedema, actually looking at my wrist right now and wondering, is it lymphedema starting, or is it just the normal right wrist swelling that I get sometimes when I write for too long. Hard to tell. And I am paranoid. So that makes it even harder to tell. I have a doctor appointment day after tomorrow. I can show him then, Dr. P. See what he says. Perhaps drop in to see my lymphedema specialist and the physiotherapist while I'm in that part of town anyway. We'll see which way it goes between now and Wednesday. My middle finger on my right hand, really feels like the nail will come off. That would be bad for the lymphedema too. They tell you to try not to get mosquito bites because of the risk of infection, nails falling off are probably in a whole different, bigger risk category.
And in the end that is the thing about cancer and this treatment. It changes all the rules. It changes the rules in ways that are unimaginable if you don't have cancer, if you aren't going through treatment, if it isn't your own body that has changed so dramatically. The doctors, nurses, and therapists might know in a logical way. But that is not the same thing as being in your body, and the rules of your body change and shift in such fundamental ways.
Why do you care about cholesterol when the chemo has probably damaged your heart way more than any extra serving of eggs will ever do, even if you had that extra serving every day now for the rest of your life. It's so out of proportion. It silences you. It silences you out of the whole every day health conversation that people are still having all around you.
It reminds me of the insight on the silence of young girls with abusive boy friends. If all the other girls are taking about boys trying shyly to kiss them, about what to do if he tries to feel you up. Giggling with each other over their new found power. What do you say if your boy friend was bashing your head against the door of his car until you saw stars, then threw you in the back seat and raped you there. How do you join the pyjama party conversation then? Your experience is so far off compared to their’s that you are silenced. What can you say? You can't say anything. It's a whole other planet from the normal fumbling and fondling that goes on between boys and girls that age. You're afraid to talk. And what could you say that they could even understand.
That is the way I feel about my body and health now. Yes, I am getting back into exercise and fitness again. It's kept me going through all of this chemo, it's kept my will to live going too. But I'm not really in the same conversation as other people anymore. I am silenced on that front. And even other cancer survivors, even other specifically breast cancer survivors. It's a different story for each of us. And it's taking all of us different lengths of time to grasp what's going on. That one women who thought, thinks that she and the doctors should have better control. The one who had the BRCA gene, with the total hysterectomy, and the lumpectomy and reconstruction that turned into a double mastectomy in two weeks, right before our very eyes. She still thinks that somebody should have known this would happen. At the very same time that she shopped around through five different surgeons before she found one who would do the implants at the same time as the surgery. Double masectomy, plus two silicone implants, couldn't move either arm, and showed up a the group meeting. She still thinks she should be able to control this, control her body, if only one of these doctors would get it right, if only one of the would listen to her and do what she wants. It's heartbreaking to watch. She is fighting for her very life now. And she seems to know it on one level, and profoundly deny it on another level. Worrying about implants. Going through all that extra pain, forcing your body to make all those extra adjustments, use it's energy on that, when she has started the real, do or die cancer fight. Right now. Yesterday, the day before they found that it had spread to her lymph nodes and was moving fast. Growing fast. Two months ago nothing. And now this.
That is the story that was in the news of Joe Biden's son. Pronounced all clear in November. They found it was back in early in the new year. And dead by June. Beat cancer in November. A survivor in November. Dead in June. That's how it can happen. I know that.
I feel it now, profoundly as it affects my future.
You have to live with both. You have to live with being a survivor. But you also have to live with the possibility that you're not really a survivor either. It might come back. And after chemo and the treatments I've had another one might come back. And with the genetics I have, I am still in line for colon cancer, and malignant melanoma too. All of the above. But I also have to live as if this is my brush with cancer, that it takes a year or two out of my life, up to three to fully recover and feel like it's behind me. Five to know that this cancer has not set up shop someplace else in my body. But really all the rest of my life with the potential of more cancer. That is just how it is now. And I knew, from my family history that it might be this way. And I knew from my family history how cancer can turn into this long, drawn out chronic situation. It can kill you fast, within a few months. Like my mom with her malignant melanoma at the end. But it can also move slowly. My brother and his colon cancer. Mom and her breast cancer. You can live for years and decades with a slow moving cancer, and then it becomes an issue of managing the side effects of treatment as much as managing the cancer itself. I have seen that personally. Up close and personal in my own family.
I feel like I am now out of the conversations about cancer and food, I don’t want to even think about the cancer causing properties of toasted bread. I've had chemo, there is no food, and no amount of that food that I can eat that will be as toxic as the chemo that’s gone through me. Ever. Those piddling could cause cancer foods are of no further interest to me. I fight a different fight now. It's the abusive rapist, not the shy fumbling boyfriend, that's what I'm up against now. And once you've been there, even if you successfully manage to get the abusive rapist out of your life, you still don't get to go back to being the innocent girl who doesn't know about rape and violence. You survive. You can even thrive. But you have to go forward from there, you don’t get to go back to the innocence of before.
And me, who has never really been seriously ill in my life. I have to go forward from here too.
I did it with my back. When I had all those back problems it knocked me down. And it changed my life forever. I now have to manage my back. I swim, I exercise, I take care of it. It's just part of my life now. And the same with my ankles. I tore the ligaments on both sides of my right ankle. It was swollen worse than my wrist. And ligaments also don't ever get better. I had to get physiotherapy to deal with the scarring, and then I had to strengthen my ankle muscles so they could take over from the ligaments. And I have done that. And I continue to do that. It's just part of my life now. The weekly swim, the regular exercise and the special ankle exercises. I just do them. Going forward from damage and injury. Just a regular part of my life. So much so that in fact I've forgotten why I do it that way. I just do it.
At the best scenario, that is what I will have to do with my arm. And with my weight and with whatever permanent side effects come out of this cancer treatment. I have to deal with it. Solve it, and then maintain it as just the way I live now, and go on like that with the new adjusted lifestyle. It's not so onerous. Mom could've helped herself. If she had really done those exercises she could probably have helped herself. And if she had really got her eating and weight under control too. But she didn't. It was all she could do to stay alive. She put all her energy into getting up every day, getting on the bus and going to work. That was her priority.
She worked in a sewing factory. It was no big career that she was pursuing. It gave her her own money that she could spend as she liked. And that was important to her. Even if it wasn't much money. She took bus trips to visit her family in BC and Manitoba. She bought magazines, and thread, and fabric. She filled a whole room full of sewing and drawing supplies - for her retirement. So she would have something to do when she retired. An entire room packed full of stuff. It's true. Dad probably would never have let her spend money that way if it weren't her own money. And she died at before she turned 65. She never retired.
She stopped working when her last surgery did not heal properly and she had a hole in her chest that a nurse had to look at every couple of days and change the dressing. That is what she was doing with her life when Dad killed himself. It was never a question of her going back to work after that. But right up until then she did plan to go back to work after that wound sealed. She died in early June. She died at this time of year. Dad killed himself in September. She died in June. Neither one of them made it to retirement age.
I have been waiting to pass them. I have been waiting to cross the year when they both died. I have been waiting to live through it. I have been waiting to see if I can live longer than them. With this cancer in me it was a frighteningly real prospect that I would die on that same schedule. That I would not make it past them, that I would never get to retirement. Me turning 63 at the end of this month.
My Dad killed himself in September. I was diagnosed in September. Both of us at 62. Hmm. I'm glad I didn't realize that then. I'm glad I had his age wrong all this time and only figured it out now, a year later. I'm glad I only figured it out now after I've gone through all this initial main stuff where I had to be optimistic and imagine a life long enough after this that would make it all worthwhile. That helped me. I'm glad that I felt that I would in fact be done, and through it and recovered by the time I was the same age as my parents were when they died. I am glad that I didn't feel like I got that diagnosis on the exact anniversary of my father's death. But now that I think of it, maybe I did. Maybe I even did that. Better not to know a thing like that. Better to have the numbers wrong in your head. And then to find out later, closer to the anniversary of your mother's death that in fact you were wrong. The big death days have passed, are passing and it looks like you will clear them. It looks like you will get to have a look at life beyond the years that your parents, both your parents had. Talk about your magical thinking!
How can I be mad at Dr. P for giving me an more optimistic diagnosis and prognosis than was strictly accurate? I know how important these lies can be to your mental health.
That was a hard year for me, the year my parents both died. Frodo my cat buddy of eighteen years died that year. And Nana died that year too. It was all those deaths so close together. Dad, Frodo and Nana they were a big part of my support network. I loved them. They loved, me, were proud of me, accepted me fully who who I was. That time is like a blur in my mind. A blur of grief. They were my first close deaths. They were the first deaths that weren't distant cold grandparents who were expected to die in your lifetime anyway. They were the first really hard, heartbreaking deaths. And they all happened pretty close together.
I am remembering that time. Death. Death is part of the equation again.
But it's like my back weakness, you know it's there, you've seen how the future might be. But that doesn't mean it has to be that future. I solved my back. I got another good twenty years of pain free, fully mobile life from it. And they were good because while I incorporated the solution to my habits for the rest of my life, I never went back to my old, back injury lifestyle, I did go forward. And while there were some rough spots along the way, and a price to pay, my back never bugged me like that again and I really took advantage of that. I had a good, active, adventurous, full life. I'm glad. I have no regrets if I have to live a physically more restrictive life now. I would be okay. I got an great extra twenty years. I’ll have those great memories as long as I have memories.
And the same with the cancer. I can see this as feasible. That I go through this. I have this chronic situation now, but also a way to live with it so that I forget about it, manage it just fine. Let it change your life. Let this little look a the future, this preview of times to come inform the way you live now. And the way you plan for the future.
Different things will be important. I want to take advantage of different things when I get through this.
What? What has changed in my perception? Time. Time and energy. I am thinking differently about time and energy. I am thinking differently about where I want to put my time and energy. And myself in relation to the universe too. I am thinking about that. My role.
I am in this pause. I don't know what will happen next. I don't know if I will get to start doing any of this.
I have stopped. This is the first time in all of this that I've actually just stopped. And it's not because I have to. I am well enough that I could've been doing housework on schedule this weekend. I could've been making dessert and a nice Sunday roast beast dinner yesterday on schedule and did my manicure too. If I could do it in the middle of chemo, I could do it now. I am regaining my strength and mobility and pretty much able to use my arm as I normally would. But I have stopped.
I barely took care of some plants. I went to a social function on Saturday. I made cinnamon buns to welcome the new summer students to the film company downstairs and I cleaned up after myself. I started the second sleeve on the granddaughter sweater. I did my exercises on Saturday. Stretches and mobility exercises both days. That was all I did all weekend. Listened to the radio.
I could've done more. But I didn't. I have stopped.
I don't know what the next step will be. I'm not interested in cleaning the house and being ready for it it either way. Why am I so stopped?
Because I know more now. I know that if it turns out that there is more cancer there, that they want to do more tests and possibly more treatment that it will be a whole different ball of wax. It won't be, do the treatments, however tough they are, get through them and then, even though it might come back you will probably get a bit of a break to have some life in between. Decide how to spend that life in between. That is the good outcome story.
I know more. The bad outcome story will be a whole other ball of wax. More serious decisions will need to be made. I will have more choices, it won't be a case of just doing the main, regular protocol anymore. We will all be in territory with less charts to go by. And it will be more deadly. So what will I do? I will do some further tests but not others. I will do another pet scan, but probably not a chest lymph biopsy. I will get on a plane and go visit my family out west, even in this small period of time between now and whenever, whatever the next level of treatment is. So what if it's a risk for my poor arm. Not the issue anymore. Because that news opens up the option of beginning of dying. It won't matter about housekeeping then. It won't matter what's going on with the housekeeping.
This is why I'm letting my bottle garden die now when I was so faithful about keeping it alive when I felt like I was barely alive myself. I might have to just shut it down altogether. No sense firing it up the day before I find out that the cancer is still there, has grown in the background, set up shop somewhere else, has these aggressive cells, still small yet, but alive that will need massive amounts of who knows what chemo to kill them. No sense worrying about housekeeping right now. If it's bad I won't care anymore. No fooling around with recreating a new life from here. And forget my old work job too. I will just resign officially if I find out I still have cancer.
My little decision system fails me now. There is nothing I can do that works for both the prospect of this was it, cancer cured, still this prevention chemo pills to take, and that’s a way bigger hiccup than I thought, but still - heading towards recovery and the expectation of a long enough future life to make it worthwhile. Or the prospect of, it didn't work. There is still cancer growing in me, and we have a whole new ballgame. Because I know I will act dramatically different. Starting Thursday. Then it will be all different. I may blow money foolishly. I probably will hop on a plane. I'll probably go see my kids and grandkids. I won't fool around being patient and long term anymore. All of that will speed up. I would go visit everybody before I go into another horrible, me destroying round of treatment.
The only thing I can do with myself as I wait is simply take care of me, in the moment.
I can keep up with the range of motion exercises. I can keep up with the mountain walk. I can keep up with the strength building exercises. I can keep up with the bathing and grooming. I can keep up with the naps, rest and meditation. I can stay calm and relaxed, not stress myself. I can be as ready as I can be, mentally and physically to hear the worst if I have to. I guess that's what I'm doing now.
It's not the same as being depressed. I don't especially think it will be the worst. I think that in fact it will probably be the good news. It's just that I'm keeping calm, I'm not wasting energy on stuff that might not matter after Wednesday. I don't mind the pause before the storm. It's a part of life. And it can be a meaningful pause.
I am living in the moment. This moment. And I know it will end soon enough. Soon enough we will know more. And then it will be a case of, hey I better get going on the housework and plants and get myself set up for summer in the city, and making it through this phase of treatment, and plan the next few months, six months, year of my life accordingly. Which is more or less what I'm already doing.
Or, it will be the other thing. And that will be dramatic. I will move quickly on that one. And it will shock my husband and family what I do and how fast I move. They will have trouble keeping up with me. But I will have to move anyway. Because I won’t have much time.
Why? Because if they do find cancer elsewhere, if they find cancer that is not in my breast, then I'm stage four. That means that my odds of dying of it are now greater than my odds of being cured by any form of treatment. And that's why my decisions will get harsher. And that's why I will want to be amongst family and friends before I go into any kind of treatment and before I start the dying process. Either way. I may decide to just start dying, the way our friend M did. Take what ever life I get while I still feel more or less okay, and forget the treatments. I will take time to make that decision more carefully.
I didn't need to do it with the first diagnosis. My odds were better than 50/50. They were 75/25. Still in my favour. If this cancer has spread to other organs, then everything changes. And soon. Dramatically and right away.
So. No, I'm not depressed. I'm not waiting because I'm depressed. I'm waiting because I know if it goes that way that I will have to accept it right away, and I will have to throw a lot of energy into adapting to that new reality and making the most out of it my time. I don't want to be caught still living by old rules and expectations of myself.
Small things I regret. When the kids were young I had a whole day to myself. The boys were at a sleepover and boy scout camping. I cleaned out the freezer. That's what I did with that day. That clean freezer wasn’t worth it. What a waste of a precious day to myself. I could've spent it with my best friend. We could've had a good memorable day together. I could've simply spent it on my own. I could've spent it sewing a new outfit for myself, or for more my baby niece. I could have spent it simply relaxing and enjoying the peace in my house. Stupid to clean the freezer on that day however much it needed it. That’s a job I could have done easily with a houseful of young boys and their friends running around me. And so that is why I am not getting into the plants and housework right now. It might be stupid.
Better to spend this time being content and comfortable. Walking on the mountain, doing my mediation walk. Doing my range of motion exercises. Napping, reading, knitting, listening to music, playing with Luna the dog. Just being. Just being alive. Gathering calm. Gathering strength.
I guess gathering calm and strength will be good either way.
If the news is good I can use this calm and strength to get through this last bit of treatment. I can wake up and set up the gardening for the summer, set up a visit to Camp Comfort. I can do that bit of housework ahead of the heat. And maybe I can do some cooking ahead of the heat too. Ahead of the heat and radiation. Getting ready for brother’s visit. All of that. And I can send out little updates letting everybody know what's going on with me.
And if it's the other news, bad news then I can use the strength and calm for that too. Resign from my office job and scriptwriting film work. Completely. Inform my insurance people. Go spend time with my family as I decide, or make them come here. I could travel tomorrow if I had to. Never mind my arm. I could do it. But that would be one of the first things I do, go back and see lymphedema specialist, get the compression garment for my arm. Ready to hop on a plane.
I think it will be fine. But I don't know for sure yet.
Dispatched: June 3