I will say that the wig moment was exactly like a teenage experience, out in public doing a new adult behaviour, being overconfident and having it go bad. I wore the wig to the laundromat, back and forth, no problem. I wore at home most of yesterday and into the evening, no problem. I was starting to forget that I was wearing it. That's how comfortable and confident I felt. Then I went out for that just one extra trip to get groceries.
The sun is shinning. I slept from 10pm pretty much all the way, meaning that while I drifted to the surface I didn't wake right up or get out of bed all night until 5:30am. I feel really good this morning. Yes, I did have a bit of a throw back last night, with shooting pains happening here and there in my body. What the heck? But it wasn't much. For sure my nose has stopped bleeding, and the allergic reaction is reduced, it's only my face, the top of my cheeks that flare up by themselves now. But my finger tips are still numb, and so is my tongue.
What is making this big change in how I feel? I'm coming out of the fatique. I'm feeling more alive each day. I can stay awake without a nap. I still get the odd, must sleep now moment, but that generally happens at night, at the end of a real day, staying awake. I can go longer without eating. I can sleep longer. I can walk further and longer. Each day it's more. I did not think that was what health, and adulthood meant. Being able to stay awake, not having to eat every couple of hours, not having to use the bathroom so frequently, being able to focus on something for longer periods of time, going further for longer. It's such a simple thing.
But after six months of living first like an infant, only being able to sleep for two or three hours at a time, only being able to stay awake for two or three hours at a time, having to eat every two or three hours, and only being able to eat small amounts. And then graduating to being a toddler, so being able to stay awake for three or four hours, having afternoon naps, being able to have a more consistent schedule, but also going through the mental aspects of the shooting pains and the burning pains, it is a relief to be able to extend all those times without feeling really sick and it's a relief to have less random pain even if I have settled into this numbness in certain parts of my body. It's still a relief. Just to be more alive, to feel more alive and more 'mature' like my body has matured past these chemical induced infant and childhood stages. And that I'm out of that chemical induced torture room. Mostly out of that chemically induced torture room. I feel a bit like an army vetern now, having flash backs. Still the odd shooting pain. I like to think that maybe this time it's the nerves coming back online that I'm feeling.
I looked at my cream of wheat box. One serving does give you 80% of your days vitamin B12. I think that is what protected me from the real bad pins and needles in my feet. That does seem to be pretty common, three of the few people I know who've been through chemo have that. I don't. And I was on the stuff that gives it to you.
Here is the other thing that seems to be coming back. My brain. I feel fog lifting.
Where am I at now? That is what I was going to do for today. Make a little assessment of where I'm at now. And I did go through and list off which things have got better and are getting rapidly better. But I forgot to list the big one.
It worked. My cancer appears to be gone. That of course was the point of all this. Killing cancer. And while we don't know what will be there microscopically. The cancer that was there, and big enough to start killing me in the not so distant future is essentially gone now. As far as we know there is no cancer in my body that is large enough to dectect on any of the pre-screening tests. At this moment I would pass a mammogram. I would probably pass a CT scan. I could start my life over as if I never knew I had cancer, as if this whole six months had not happened, and I would be able to go on for another what? A normal lifespan. There is a part of me that feels that way. That I could walk away now. And I would still have pretty much of a normal lifespan from here on out.
But that is all a bit false. A, the chemo itself has done damage to me, and I am at greater risk of getting new, and more aggressive other cancers than I was before. And there is a greater risk than I'm telling of this cancer starting up in a organ, an small, essential organ where if it grew to this size it would be killing me already. Breats are big, non-essential organs, a tumour can get quite big there without killing you, compared to say, the same tumour in your lungs, bone, brain or liver. Those are the places where this cancer could show up again. If that happens then basically I'm stage 4 and not likely to be cured. At that stage it will be just making me comfortable. All of those things might be happening right now. The beginnings. That changes the game considerably. And that is why the business of surgery to get rid of any stray cells and also know more about the cancer that is/was there is important. That will help.
And that's also why the radiation will help too. Just to keep any stray cells from getting loose and starting up shop someplace else. So. I get it. I still think this treatment plan is the right thing to do. And I will go through with the rest of it. And optimistically, when I get to the end of this, with whatever additional permanent damage I pick up from the surgery and the radiation that will be it. That will be the way I get to live for the rest of my life.
And I shouldn't be so down about even the metastis. My brother’s colon cancer showed up in his lung. And look at him, five years out with no new cancer. Damaged, yes. Not fully functioning, yes. Still living his life the way he wants to live it? Yes. His life now is not much different from the life he had before. So. Take heart. Especially because we probably do have related cancers. My will probably act like his. These are not the fast, kill you in a few months varieties.
So. Here I am. Celebrating the end of chemo. Yes, they lied, I am not better now. There are lingering effects. Some of these effects may be permanent. And perhaps they will the kind of thing that you just get used to, the kind of minor disability that you just get used to and you carry on without having to change your life very much. That is where I am right now. Even if the side effects stayed exactly like this, I could get back to my old life from here and carry on pretty much unchanged. I can see my way through to that. So. I feel like yes. I made it.
And I am already starting to have the adventures of coming back to life. Yesterday turned into a bit of a comedy of errors for me.
I was feeling better. The day was nice and I made a bigger to do list, and I tried to do more. And I tried to do too much. More things can go wrong when you do that. Especially if you haven't done much for six months. How shall I describe this, is this a bit of the pre-teen stage? Or even the teen-age stage where you start getting out in the world and doing adult things on your own for the first time? Perhaps.
I was set to do quite a bit actually when I look at it. It was an almost 'normal' day for me. And it was too much.
Things started to go wrong. I will say that the wig moment was exactly like a teenage experience, out in public doing a new adult thing and having it go bad. I wore the wig to the laundry mat, back and forth, no problem. I wore it most of yesterday and into the evening no problem. And it was even fairly comfortable the whole time too. I was starting to forget that I was wearing it. That's how comfortable and confident I felt. I think it looks 'wiggy' and not that great but I was okay with that because it makes George feel more comfortable. Then I went out for one last trip to get groceries.
There was a strong wind blowing just outside the grocery store and I had to duck my head facing into the wind much as you do with an umbrella on a rainy, windy day. In the grocery store I did start to have a feeling that the wig was lifting off a bit. And I did try to re-set it once, but realized that I was in a public space, and re-arranging your hairline is not the same thing as re-arranging your toque. It looks weird. People get a bit creeped out when you grab your bangs and move them down an inch. It felt like it was more solid though, so I continued on without thinking.
I should've been thinking. The same wind hit me sideways on the way home. It took that wig right off my head and blew it onto the road. I saw it there skittering away like some kind of stray cat, a wig moving around on the road looks like a cat or a big fat squirrel. And then I realized that was it, that was the only wig I had, my free wig and I went after it. With my bald head. Worse than bald actually, I had still had the underneath wig cap on, which is basically a bit of panty hose on your head. Carrying a full heavy bag over my shoulder, that had a bottle of wine in it -breakable bottle of wine. Chasing this wig/animal round the middle of a busy street. Luckily it was between lights, so while there was this army of cars watching me, they were still behind a red light when I was out there making an fool of myself. That was the fastest I have moved all winter. Probably the most of my own adrenline that I pumped too. And every time I reached down to grab the wig, the wine bottle clinked on the pavement and I was sure it would break adding a whole wino aspect to my disgrace.
It took two futile grabs before I finally caught that wig and made it back to the curb. Then what? I did not want to stand there putting my wig back on, in front of all the people who had stopped to watch me. Plus I was hampered by the big heavy sack of groceries. Luckily I was wearing a hoodie. I was able to just pull the hoodie up, and I was glad of the hoodie, now I was in disguise. I shoved the wig into the sack of groceries and make it the rest of the way home without further incident.
And luckily, I took that laughter workshop only the day before and was reminded to laugh at myself first. That is the first step in learning the laughing lifestyle. Laugh at yourself. Point at yourself and laugh is the exercise. Yes, I was seeing myself from a drone/selfie point of view as I was scurrying around in middle of that busy street, chasing the wig that I swear really was like trying to catch a puppy or kitten that got loose in the street. Crashing that wine bottle into the pavement without actually breaking it. Funny me.
That was a teenage mistake, being out in the world in a new scenario (wearing a wig on a bald head with nothing to anchor it to, cheap loose fitting wig so the wind can get under it and lift it up, a longer wig so there is more material there to catch the wind too) I don't attribute it to any chemo brain effect. That was a learning curve issue and I'm actually kind've pleased that I was able to have a fast reaction, ramp up some courage and save that wig without risking my own neck. Kind've pleased with myself about that one.
The next one was not so good. I was cooking. I was cooking two new recipes and it was actually going pretty good. I did them in the wrong order, and would do that differently next time, but my assessment of the potential of the recipes and their suitabilty for dinner on one of these first warm days was just perfect. I made roasted pork tenderloin in a maple/chipotle sauce and tagelilli with lemon cream sauce and fresh asperagus. It is a perfect early spring dinner. It tastes like spring with the asperagus and maple. And you slice the asperagus into little rounds, living the tips as tips and only blanche them so they are fresh and have a slight bite to them, not quite raw. Delicious in the lemon cream sauce. The lemon cream sauce recipe was fantastic. And the maple/chipotle was great on the pork. I started the pasta dish first. But I should've done the pork first, got it into the oven, and then done the pasta while the pork baked. It was fine, it's a small change, but that is definately a meal that I would make again. So worth noting and remembering.
While I was cooking, in the midst of tasting things and going wow, this is actually really good, and wow I can taste it too, the doorbell rang.
It was the fellow from the fish store downstairs. My husband came back upstairs in a huff, panic. The bathroom sink sink was overflowing. I was hand washing my little grey toque earlier in the afternoon, I left the toque was soaking, the tap drips. The sink overflowed and water ran down through the floor to the fish store. That was a disaster. I felt bad.
And how should I take that one. Chemo brain? I did completely forget that I'd started washing that toque. I forgot it completely, though as soon as we realized there was flooding then I did remember the toque. So I forgot, but I remembered again. It didn't stay forgotten.
Chemo brain? Or just coming back from a long illness and doing too many things at the same time compared to only even just a week ago.
Chemo brain? Or that's the kind of thing that we've actually been doing in this apartment all along, periodically someone starts a sink running, starts doing something else and the sink overflows. That has happened many times over the years. It's happened when we were younger, still in our primes, and it's happened before chemo.
So. I have decided to take this as just one of those things. Chemo related in that I am coming back from not being able to do very much only doing one thing at a time, to juggling more different activities and thus dropping the ball once in a while.
I would not have imagined that these mess-ups would be signs of recovery. I did not picture that this is what I would be writing on my end of chemo, see where we are assessment of this part of the treatment. I'm feeling better, I'm doing more, I'm doing some completely new things as a direct result of the chemo, I'm messing up again. I haven't messed up like this for a long time. I forgot how it feels to do things and mess up. That's because I haven't done things for a long time. I'm starting to do things again and I've discovered messing up again. Wahoo, who would've thought?
I did picture the restless part, and the boredom part. But I did not think it would lead so naturally into the mess up part. Of course it would. I should've known.
And here is the other thing. Somehow I imagined that I would have this day free, free to be me. All day, no chemo to go to, no chemo to recover from, take a celebratory day. But that is also not to be. I have responsibilities again. It’s tax season. I have to get my tax stuff ready by tomorrow. That means I have to do it today. And I took down all the towels and faceclothes to do household laundry yesterday but couldn't carry the weight of both that and my clothes laundry, we need clean towels. So I have to do that today too. It's not going to be a day off. It's going to be a day of back to my old life. It's going to be a day of doing household work and income tax preparation. Perhaps that is the way to celebrate. It's a day of taking care of me in that way. Not naps and baby food so much as income tax and laundry. And a bit of gardening. I'd like to put my geraniums actually up on the balcony ledge and hang the big fake wasp nest. What can I say, these are all non-cancer things. It can be a total non-cancer day. A busy full day, free from cancer activities and cancer thought. I can give myself a day like that for my celebratory treat.
And of course thank you letters, spend a bit of time in gratitude. I think I might do them tomorrow instead. That's back to cancer thinking.
I promised myself that I would do a bit of a chemo debrief on this day, that I'd write down what I'd do again, and what I would do different, and where I am at now at this point three weeks after the end of the last chemo. I think I've already done the last part. But what about the first two?
What I would do again:
Drink plenty of fluids. Take that rule of drinking one cup of fluids each hour while you're awake, especially in the first few days of the most chemo and most drugs in your body seriously. I think it did make a big difference in reducing side effects, some of which I think might be dehydration like a hangover, and protecting your organs like your kidneys, liver etc helping them deal with all the dramatic stuff that's going on in your body at the cellular level. It will really help your body deal with all of the toxic stuff that is happening to it.
Get up, bathed and get dressed. Every day. Even if it takes you until noon to do it. Even if you are just going to wear sweatpants and a t-shirt so you can have a comfortable nap right away afterwards. As much as you can, as hard as it might be. Get up, bathed and dressed. You will feel better for it. Mentally and physically
Walk. Every day. Outside. Walk slow enough that you don't get out of breath or dizzy. Even if you can only get out to the sidewalk. Even if you have to so slowly that it takes you 10 minutes to get out to the sidewalk and then you have to hang onto lamp post for a few minutes before you can turn around and walk back. Do it. You will feel better for it. Mentally and physically.
Physical details matter. Stretchy waste bands to accomodate weight gain/loss, and sudden naps. Sheets with a soft texture. Comfortable clothes with a soft texture. Dressed enough so that you're not embarassed if someone comes to the house or sees you outside on your walk, comfortable enough to have a good nap without getting changed. Soft towels. Soft tooth brushes. Good gentle cleansers. Good gentle lotions.
Social contact matters. Let people know what's going on, you can't expect them to act correctly if they don't know the situation. I found it easiest to send a short email first, then follow up with phone calls. It gave people a chance to react and accept the shock of it all and get into a better mental space before I talked to them. I think it would've been too hard, but maybe also really cathartic to talk to everybody and go through the shock of discovery with all of them. It was okay to phone close family and friends first, and then do the emails out to a wider range of people. Respond to offers of support. Ask for things that the people can do to help. I asked for knitted toques from my knitting friends. I asked neice and sister to send me adrenaline jolts when I was in the worst parts of the AC chemo. Whatever you need, ask for it. People want to help if they can. And be appreciative. Thank them. Let them know their support is appreciated. But don't be needy, angry and demanding at them. This is not their fault. They don't have to take responsibility for how you feel. I think I got it about right. I saw that people who got into the blogs and got support from strangers also got into trouble when they started to get to sick to maintain their blogs, and their followers got disappointed and angry. I also went into, I now promise nothing - no social engagements or contracts because I do not know if I will be able to keep them. I think that was good.
What to do different:.
I would get on top of the logistics faster. You don't have a lot of time between a cancer diagnosis and the start of treatment. Your window for getting sick leave from your job, finding someone else to finish off your freelance projects, or making a plan for a reduced work load is small. Your window for getting medical insurances, government financial support that you have put in place is small, you need to get on that stuff right away, even if you are still in shock and don't really believe it's happening, even if there are waiting periods, get that stuff organized, dig out the paper work, find out what forms or certificates that you will need figured out and ready to go, start contacting the people involved and let them know it's coming down the pipeline. Because once treatment starts it all gets much harder. You have less time and you are too sick to do much when you do have time. There is a reason you can't work when you're on chemo. All this kind of medical paper work is like work. Do it as soon as you know what the treatment plan will be. The very next day. I waited too long, and then it all got longer on account of just being too fatigued and chemo sick to move it forward in a timely manner. Next time I would spring to life on all that stuff.
I would step away from freelance projects completely. Yes the documentary series was a good distraction a couple of times, but mostly it just tired me out. It depressed me. Maybe if the topic was something that was more uplifting, or if it was a good social interaction to do it. But working alone on a depressing topic was the pits. Not worth it.
I would try to be physically closer to people that I love. There is a lot that you can do with facetime, skype, phone calls, text messages, emails. But none of that is the same as a good old fashioned hug, or seeing the look of love in someone's eyes, or a touch on the shoulder. Touch is important. I'm glad I have my husband. I'm glad I didn't go through this living alone. But it's a lot to put all of that on one person. So, I would try to be closer to the people that I love enough to touch, and they touch me. And I'd like to have a pet again for that too. A cat to sit on my lap and purr for me. A dog to lean against my leg and give me a big wave of empathy when I feel like I can hardly stand up. Living touch. I would pay more attention to that.
I would do even more to clean the apartment/house ahead of time. It's hard on you to sit there and look at greasy dust on the bathroom shelf when you know you should not be digging around in there stirring it up while you have immune issues.
I would get my teeth fixed and organized ahead of time. I went into this with dental work that needed to be done. There wasn't time this time. I made it through this round of chemo without mouth issues, but I was afraid of that the whole time, it would've been really bad. And next time I will be already reduced by what happened this time, so I can't count on making it through again.
Dispatched: April 17