When I scratch my forehead above and between my hairless eyebrows it snows in front of my face. Scales of dead skin float down when I scratch my forehead. Who am I kidding about going right back to my old life? My nose is still bleeding all the time. My tongue is numb. My finger tips are numb. I am getting waves of nerve pain running through my legs...
Last night I had my first chemo treatment nightmare. I haven't had any up until now, I guess my brain had to wait until it was done before I could start having these nightmares about it. Or maybe it was just that I was still in the nightmare so there was no sense dreaming about it, not while you're living it.
I'm afraid. I feel like I have to go back to my old life, my exact old life only now I'm weaker and have numb fingers, and a bleeding nose, and random shooting pains, and chemo fog brain. I don't feel like I can do it. Correction. I know I can't do it. I can't do it now. I put up a good front walking around with my son on my strongest day, and then again on the steriod day right after chemo before the weakness set in, and having the temporary happiness of my son nearby was also a boost. But I know I can't cope. I know I can't do that every day. And I know that even that burst of temporary energy and ability is not enough for me to be able to handle my old life. Juggle all the things of my old life. I can't do it. I'm afraid.
And not getting this paper work sorted out so I can get the disability insurance. Not even being able to do that one simple thing.
I feel like I can't do it. I'm afraid of the future now. I don't think I can cope with it. I feel like I'm being funneled back to my old life, only know I will have to live that life with less energy, less health and resources and lost time too. If I go back to my old job I will have to fight my way back across missed deadlines, lost time, lost funding opportunities. It's overwhelming. I'm afraid.
And the idea of a new life, of making a new life that I can manage, and where I will even thrive and prosper is slipping away from me. The old life is bigger, stronger, expected, I spent a long time building and nurturing that life. It is pretty strong. The new life plan is fragile, delicate, like a seedling, It seemed so real, and possible when I was completely down and not expected or able to do anything at all. I hung on to it. That is what I was staying alive for. I wasn't staying alive to come back to this old life. I knew then as I know now that it will be the frustrating case of me trying to be who I was when I'm not that person anymore instead of accepting the new, and okay, but a different person that I'm becoming.
Even though I'm still feeling the chemo effects just as much as ever, I haven't even passed the first no chemo week, there is already social pressure to get back to who I was. "You're done. Yippee. When will you be back at work, family responsibilty, social responsibilty." And I guess that is the danger of making a big deal out of successfully completely these different treatment phases. People think you're better. And they expect you to be back to who you were. And I don't think I want to go back, I want to go forward, I want to go forward to somewhere else.
And it feels especially bad when I am sitting here in the deepest trough of accumulated chemo and accumulated time served as a chemo patient, not expected to do anything or be anything for the past six months. Suddenly I feel all the expectations coming back. And this is my own fault. I am the one who starting taking an interest and looking back at the same time. Back into my old life. Which I liked. I liked my old life. But it's not the right life for me now, not now that the earthquake has happened and I know that I live on a fault line. Now I need to start building my earthquake resistant buildings I need to make these adjustments in my life. Nurture that tiny little seedling even after it's protective little cloche has been removed and the strong sun, winds and rain, and infestations of molds and fungi can get at it.
Last night I had my first chemo nightmare. I think this is also a sign of the change between then being right in the chemo and going forward, coming out of it. And the nightmare came because we watched Unbroken and Before I Go To Sleep. Two movies that centre around torture. Physical and pyscologolical. That too. And here is the thing, with just straight physical pain, or torture, or whatever, you always have the option of just exiting your body, being somewhere else. But with mental torture it's different, you don't get to escape that easily.
Chemo is like this perfect exquisit torture. It's probably a good thing that the chemo stuff itself is so expensive otherwise it would probably be used for torture more often. It is physical, and it's mental, and it's random, the patient/victim does not need to be told what the effects of the injection will be, when they will hit, or how long they will last. Maybe for your lifetime. Maybe for the rest of your life. Not the healed after-effects, but the active ongoing effects, the actual torture part and pain just randomly happens when you least expect it. How great a torture system is that?
Years ago I told my sister that I wasn't surprised that she was all jumpy and nervous as she was getting her teeth remade with twice a week sessions in the dentist chair for root canals and implants. Her body understood that she was being tortured. Her body reacted the same way as a torture victim would. Why wouldn't it? Even if she knew this is what she wanted, even if she was paying the dentist a lot of money to do that to her, in the most basic, deep understanding of the body she was being tortured. Of course she was jumpy. Her body was trying to make her more alert and able to get away, save herself before the next torture session began. But at least in her case the physical pain connected to the actual event and to an actual place. She knew where it came from. Even her body knew where it came from. The dentist's office.
Chemo is not like that. Sure you feel the injection. And you might feel some immediate effects from the chemo itself, but the real, debilitating effects happen from within, randomly not connected with the chemo room. How exquisitely awful is that?
Here is my chemo nightmare. Picture a long hallway, like a hotel hallway with doors on each side. Each one of these rooms is a torture chamber. I start at one end of the hallway and get pulled into the first room, injected and I overhear talk of dosage, effects, the torturer trying to give the maximum dose that will do the most damage and still not quite kill me. And also the most effective cocktail that will cause the most damage to my particular pyschi. Is it hallucinations? Or perhaps sudden unpredicatble muscle failure that knocks me off my feet when I least expect it? What about sensory input? Maybe something that creates a visual fog that you can't see through? The bag of torture tricks is endless. It's only a matter of experimentation to find the most effect, and fine tuning it so you can use it to the maximum effectiveness without actually killing the patient/victim.
In the torture chambers the chairs are like the electric chair, an executioners chair, The nurses wear black hoods on their faces. Executioner hoods. The doctors stand apart behind one way mirrors, but they are not really out of sight, if you look they are just like the Wizard of Oz behind the curtain, pulling the levers and strings. And more than that, they keep forgetting and walking out from behind the mirrors to make suggestions and adjustments. And you can hear the discussions. You can hear the details of what could happen to you as the result of each injection, but you never learn enough to know which injection you got, you never really know what to expect after they inject you.
You get an injection and they push you back out into the hallway. You are all alone in the hallway for the actual torture part, whatever it will be this time. You are all alone in this long hotel style hallway with all those doors leading to all those other torture chambers. You don't even have that weird intimate relationship between the torturer and his/her victim. You suffer the actual torture part all by yourself in the hallway.
You suffer the symptoms.
Until they come and get you, come out of a random door, pull you into any one of the torture chambers along the hallway. Chatting away amoungst themselves. You are generally just weak and recovering, starting to look around when they come and get you, sometimes more weak, sometimes almost strong again. They never see the actual torture itself. They are separate from it. Their lives are social. Your life is alone out in the hallway. Alone in your body.
Some of these tortures leave physical marks, even if they happen internally they still leave physical marks. And the nurses and doctors can make assessments based on them. Some only leave mental marks. And that is trickier for them. And they miss important signs, and people do die from those. You see them inside the torture rooms, stacked up against the wall, waiting to be disposed of. There are other hallways, other victims alone in their other hallways. You pass by each other in the torture chambers, one getting taken out as you come in, someone else on a gurney coming in as you get taken out. They are the only ones who will meet your eye. Fellow prisoners/patients.
There was a single door at the very end of the hallway. I saw it every time I was in the torture hallway, going through my various types of torture like the seven plagues of Egypt ( see how I'm managing to fit most of the movies I've been watching into this nightmare?)
I have mixed feeling about that door. It's the only one with light coming through around the edges. It's different from all the others. But I don't know if that's a good thing, or if that's a bad thing. It's like the shute on a pinball machine. You get bounced from side to side through all the flippers and boingers, but then everybody eventually ends up going through the shute, and from the top of the table you can't see what's down there on the other side of that particular door? Is it an end? Or is it a beginning? Can't tell. And there is not guarentee that you will get there either. Those stacked up dead ones, either dead physically or mentally or both, don't get there. They are either stored until they actually die, or they are sent out the waste disposal shute.
That was my first chemo treatment nightmare. I had my first chemo treatment nightmare last night. I only had it after my last chemo treatment.
I won't have to go through any more of these doors. At least not for a while. At least not until after the surgery.
I could be done with chemo for good now. I could be allowed to have nightmares, face the horror and then get on with normal life afterwards. Or, and here is some of the exquiste torture part, I could need to start chemo again fairly soon, or a recurrance or secondary cancer may start up and I could need to start chemo again any time in the next few months to few years. But that's not all, I won't be safe even then, another cancer could start up years and years from now, a genetically related cancer, having breast cancer does not get me off the hook for colon cancer or malignant melanoma either. It is not a pick one sceneario. I am still at equal, additional risk for both of those. And yes, I realise now that is one of the reasons that the sibs and I are closer than most, and stick with each other. We are the ones. We are at greater risk of losing each other. And we also know more about what this whole process is like, from our mother, from our lives growing up with cancer. And even if I don't have to go through chemo for any of those reasons, then there is always the chance that this treatment itself, these chemicals, the radiation, the treatment itself can be the cause of a new cancer developing, and needing chemo for that.
So while I've started to have the chemo nightmares, while I appreciate that chemo is it's own kind've torture both physically and mentally I also can't just deal with it as if it's over now, deal with it, however hard that is and move on. The horror of this is that it is like a horror movie where Carrie's hand comes out of the grave at the end. That is this story. There can always be a sequel. It won't be the same. It might be better, it might be worse. But with the chemo story franchise there can always be a sequel.
The cycle between sequels can be as small as daily chemos, or as big as 15 year recurrances or new cancers arising. But it's a cycle. If I don't get a recurrance or a secondary cancer, or a new cancer arising from treatment it will be simply because I die of something else before that particular cycle can complete itself. That's all. It's in the cards now for sure. But that doesn't mean that I will get to play all my cards. And no offense Dr. RichVain pre-op doctor I would rather die suddenly of a heart attack than die being treated with chemo. Your blood pressure medication is not going to save me from a death I don't want. It's going to save me from the death I do want, so that I can survive to the next cycle of the death that I don't want.
Facebook has started to give me memories. It tells me my old posts from this day in other years. Yesterday it was a post about a March snowfall last year, today it is a post saying I was off to Waskagnoish and Chissabea from a different year. I think it was a film shoot. I think it was that trip. We were working on a film for the new cultural center and museum.
Ironic that facebook should be doing this now, as I feel my way forward into who I am going to be, and yes, I am using the past as my guide too. And there is a reason that I've been going through old pictures and memoriablia, sorting these things out, there is a reason that those old photos were finally my housekeeping priority. I'm not going to throw the baby out with the bath water, I am going to speak in cliches a bit, I don't have to keep inventing and re-inventing the wheel. These are tools that I can use to create the infrastructure and scaffolding of my next, new life. The strengths of my past life. And also knowledge of the weaknesses. And even more than that, seeing what has changed. When I see these parts of my old life unexpectedly, come upon them out of the blue but from this new perspective I can see how I am different now and what still works, and what doesn't.
That trip to Waskagonish.
Here is what comes to mind, and strongly. The the forest. Driving up there through miles, and hours of northern forest. I have been in the city all winter. My biggest nature escape all winter was that walk on the mountain with M. I miss nature. I hunger for it. This perch on top of this city building where I am like a bird in a tree is okay and better than nothing. But I miss being down on the ground, right in it. I miss that. But I don't miss the work. The work was just an excuse for the trips. The work was just an excuse to physically be in those places. To be away from the city, out on the land, whatever the land, whether it was the Arctic or the Philippines, it was still a way to be away from the city.
For me the most profound moment in H is for Hawk is when Helen talks about the chalk landscape and how it is wrapped up in a British idea of itself, a romantic British idea of itself that is false. And how the different animals and plants that live there now have pretty well all migrated from somewhere else. And how false it is to make an identity out land, your land, because the land is changing too and it's own thing and doesn't care about the people and where they come from, anymore than it does the animals. All of that is a romantic falsehood that causes damge to the minds of the people and then also to the land.
I've never seen a chalk landscape, I can't even imagine it actually. And I didn't know that there was this whole British cultural identity attached to it. But yes, I see her point generally, and I think in particular how it has harmed so many of my First Nations friends, this inherent idea that somehow they are particularily attached by birthright to a particular kind or piece of land, that these are reciprical bonds that cannot be broken. The elders who have a different understanding of land, they know that it is also an ever changing, ever adapting thing and that nobody gets to sit on it expecting certainty with absolute smugness and sense of ownership, and merely by thinking of it that way you have betrayed your profound ignorace of the land and how it works. And you have hurt yourself, because that kind of smugness blocks your open mind and any chance of real truth going in.
And what about me? What about me when I keep talking about the prairie, or the bush up north. What is this? Where am I in this story? And what does that mean to me? And how should it play out in my life and my future? As I make decisions going forward how shall I understand this? I know this pull of the land is important to me. I know it needs to be considered.
And what else do I know? I know that my so called happy place is not at place at all, that it is a condition of light, whether it be the golden magic hour on the prairie, or northern lights, the sky with three suns on a really cold day, or a big golden sunset over the ocean, or sun breaking through storm clouds. It's not even a nice day, or a perfect day. It is spectacular light. Whereever, whenever that is, that is my happy place. My happy place can be anywhere. Anywhere you can see the sun. That is my happy place. Sunrise, sunset. But also big storms, and big night skies. Stars. Stars are suns. That place.
Do I feel like I have this inherited right to land, an inherited right to any part of this planet? Not really. I like the prairies in particular because that is where I grew up. I'm familar with those skies and that light. But I do not need to be there. The prairies do not need me there either. I like the mountains too. They are a landscape that has not changed since before I was born and is unlikely to change in my lifetime. Sulphur Mountain will always look like that. The snow will come and go. Light will come and go on the top of that mountain but the shape of it will stay the same in my lifetime. When I look at that mountain it won't ever be like going back to an old city neighbourhood and discovering that a whole block of houses has been torn down to make way for a shopping mall. I like Sulphur Mountain, but Sulphur Mountain does not care about me. The Three Sisters don't care about me either. And they don't care about their names either. They just are. They are familar to me so I have an extra attachment to them. But any place can become familar. All you have to do is stay there for a while, stay there and pay attention. That's all it takes.
So yes, I feel like I need some nature. But it can be any nature.
I have to have medical care. I live on a fault line now. I live in an earthquake zone. That is fixed. I won't be moving going to the States. No permanent residence in a small town, or at least not until we pass through this active stage where tremours and additional quakes are still possible and maybe even likely. Realistically that means here, in this apartment, in this city.
It means that in the near future I'll need to get my nature fix within those confines. More walks on the mountain once I get strong enough. Yes. I can even take the bus up, walk around up there for a while, on the flat, and then take the bus back down again. I can do that temporarily. As I get stronger.
It means that I can start to go back to the Y, and do my build up from that side too. Swimming. Sauna. The whirlpool. I can get into all that once my immune systems comes back, and it probably already is good enough, but there are still too many other things like surgery to go through - and this continuously bleeding nose is a good reminder to be sensible about this.
I realize that what I am saying here is that this transistion requires that I make even more of a commitment to my health, not less. My health until now has been so weak that the 20 minute daily walk, the 45 minute daily nap, early to bed, high protien low fiber diet with plenty of fluids was enough, and a daily journal entry for mental health were as much as I could handle. Now I will need to increase the physical and mental time I give to myself. So the thing ahead of me is not to start picking up the reins of my old life as I start to feel stronger. The thing is to stick with this new selfishness, er, selfcare and use that strength to simply build myself. My body, my mental health and my physical health. Both together. There will be pressure to pick up the reins of my old life, I may have to use some of my new strength to resist that. And even from within me too. It's not all just outside pressure. Just get stronger. Just get more healthy. Mentally and physically. As best I can. That is all that I have to do next. Mostly.
I'm still deep in this round of chemo. Still feeling the toxic effects, but it's starting to ease up already. Sunday. Monday was always my best free day. Tuesday and Wednesday will still be medical appointment days and my responsibilty/chance to get things on track. But the blood test will be the only invasive procedure. The rest is all just talking. And there will be no chemo. Thursday, Friday, Saturday, Sunday, will all be recovery days. There will be ups and downs. Next Friday will be my ten days from this last chemo, so it will be a weaker day. It won't all be clear sailing some of these effects will still be coming in, even as we're not adding to it anymore. The past chemos will still be working. Which is probably good, which probably makes it better as far as keeping the cancer down until after it gets removed by surgery. So don't begrudge that.
That is what should be happening in this time coming up. Forget getting more involved with work as I feel stronger. Let it go, it's still too soon. Priority number one is still plain old health. The walks, the naps. Get that exercise form signed by Dr. P the oncologist, then sign up with the fitness assessment folks at the Wellness Centre. Take the laughter workshop. Join the new breast cancer group. Stay in that zone of treatment and recovery, don't try to step out of it, don't get pulled or pushed out of it by my old life. So easy to fall back into. Familar land. It is the land I think I've inherited, but that's not true, it's not true anymore than the physical land, nobody owns it, nobody has to live there, it is all adaptable and temporary. Don't delude yourself that it has to be real or permanent just because it's familar and it's what was. Be more now. And health recovery, including mental health recovery in preparation for more kinds of treatment, that is the game and the priority now.
As well as feeling your way forward. As well as feeling your way forward through this new landscape with fresh opportunities as well as earthquake devestation. Don't just start move into your broken down, smashed up house and try to fix it up as best you can. Scout out this new land. Accept the earthquake and look for promise and new growth as well as regrowth. Make room for the better adapted immigrants. Celebrate the change, don't try to hang onto an imaginary past that is no longer. And probably never really was anyway. Get up. Look around. Make an assessment as best you can with the information you have and start off in an new direction. Go forward.
I was freaking myself out because I was ramping up to just do what I do - again. But that's the wrong thing to do. There are things I need to do, there are many of my old skills that I need to use to do them. But they are different things. I need to use my conference building skills to push through these doctor appointments and get the information out of them that I need, get those doctors on track and signing the papers I need signed in order to go forward with all the next parts of my treatment, and financial requirements. I'll be using old skills to do that, but it's a new project that I'm applying them to. That is my project now. I need to focus on that. Focus that talent, and limited amount of energy on the things I have to do for me. The things I have to do to get me through this. Calm down. Keep that focus. That is this week coming up. That is how I will occupy myself, that is how I will spend my precious bits of energy and time. Dealing with doctors and insurance companies. Trying to ge them to do what I need from them.
And continue this health program. The daily walk. The daily nap. I don't need to push it forward now. I'm still too toxic and full of chemo stuff to push it for a while. Give myself these two weeks at this exact same physical pace, perhaps merely lengthing the walks a bit, that's all. I'm still going through chemo right now even if they aren't adding any more. It will take time for the old chemo to pass through me. I still need to stay on that program for the next two or three weeks. Then perhaps I can go forward from there. Then perhaps I can add onto what I'm already doing.
All of the new stuff that might start to happen in the next few weeks should be new stuff. Not simply returning to old stuff. Let those guys go ahead without me. They can do it. Don't just set up shop in that damaged building with a shakey foundation and cracked windows. Gotta make that assessment first, then tear down as necessary before you can rebuild or even just repair. Give it good and real time for that all too happen. I rush ahead too much. I get ahead of myself. Don't do that. Slow down. Live where you are. Live when you are. Be in place. Be in time. Time and space really are relative. Be in your mind. Be in your body. Mind and body: are they relative to each other like time and space? Interesting.
When I scratch my forehead above and between my hairless eyebrows it snows in front of my face. Scales of dead skin float down when I scratch my forehead. Who am I kidding about going right back to my old life? My nose is still bleeding all the time. My tongue is numb. My finger tips are numb. I am getting waves of nerve pain running through my legs, mostly my left leg but also my right leg. All of these things can still get worse before/if they get better. Just because I'm not in the torture chamber does not mean that I'm not out in the hallway living out the rest of this torture session on my own. Be nice to me. Be nice to me about this. I'm living through an earthquake, and I'm being tortured at the same time as I try to live through it. I have to be the first one to get it, and to step up, and just give myself a break. Otherwise how can I expect anybody else to do it?
Dispatched: March 31