Back to school 2020. When my alarm went off I woke up and for about 20 seconds I forgot all about having cancer. I just opened my eyes. I felt good and I wondered as I do most days what day it is and then it all came swirling back. Id compared it to when you were a kid and you'd fall on your ass and the air would just escape your body and you'd have to bend to get it back, and heave a little. And it hurt. I just put my head back down and thought about my day.
Today I had to go to the hospital for 12:30. My oncologist has asked me to participate in a study being done by the School of Rehabilitation Science at McMaster University and the Department of Oncology at Juravinski Cancer Centre. It's titled "Evaluation of a Novel Strategy to Implement Exercise Evidence into Clinical Practice in Breast Cancer Care: The NEXT-BRCA trial." It's sponsored by the Juravinski Hospital and Cancer Centre Foundation.
Basically the study has three groups: one group that exercises before chemo with a physiotherapist, one group that learns about the benefits of exercise from a trained physiotherapist and one group(the control) that just gets the standard from the oncologist.
The purpose of the study is to show that exercise benefits breast cancer patients. The groups are randomized so I don't know which one I'll end up it but whatever group I get into I'm happy because a) they gave me a free fit bit and b) it will help implement real strategies for women in the future who battle breast cancer.
Before they accepted me into the study I had to have a physical assessment this involved me answering some questions and then doing a few little physical tests. One of which was walking back and forth as fast as I could between two pylons in the main hallway of the hospital. It was embarrassing for a few reasons. 1. I have stopped wearing bras, unless at the gym. 2. It was a busy day at the hospital. 3. There were multiple people sitting on benches watching me walk back and forth. Just staring.
Anyway away I went...boobs bouncing, sweating, avoiding people with canes and walkers in wheelchairs and on their phones. I finished the test. 22 laps. Above average. It was a funny kind of an experience. I actually laughed just for a second and it felt good. I realize more everyday how my dignity and appearance matters less and less. I cut my hair on Saturday, I don't like it and it doesn't really bother me. I'll be lucky to have any when this is all over.
When I found out I was going to have chemo my father found a system called COLD CAPS, they are supposed to prevent or at least offset some of the hair loss associated with chemo. He signed me up immediately and sent them to my house as a Christmas present.
The caps come with so many instructions, the theory is: the scalp is frozen to -25 so the follicles are frozen and don't absorb the chemo so the cells don't die, the hair stays. There have been numerous success stories, but apparently it depends greatly on how you put the caps on, how quickly you change them and the tightness of the caps during chemo and a few other things. The caps need to be changed every 20 minutes and worn for 4 hours after, still being changed every 20 minutes. That's a solid 6-7 hours of 20 minute frozen cap rotation. That's an entire working day just rotating caps.
Jason said he'd do it no problem, even though he said loving me never had anything to do with my previously fabulous hair, he still booked every Friday I have chemo off and has worked since the caps arrived to develop a procedure to switch caps that is lightning quick. He even bought some velcro straps to attach the main straps and made a holster for the temperature gun just to make sure that he's ready and the caps are at the right temperature. We've practiced a few times getting the caps on and off. It makes me feel so pathetic, but I couldn't love him more for it.
Here he is with his custom made holster, ready to take the cap temperature. Work gloves because the dry ice is dangerous, but smiling because he knows I feel helpless and he can help me a little bit by doing this.
When I get the cap on, I'll post a picture of it, but for now. Enjoy that pic. It made me smile.
Anyway. When the exercise intake was done I had to go for my ultrasound, the one that would look for cancer in my abdominal organs. I waited in the little waiting room. Just hoping that everything would be ok.
It's funny to say that "ok" because it's NOT ok. I have aggressive breast cancer. I have chemo on Friday. But Ok now means I don't have multiple cancers. Or cancers in all my organs, which would reduce my time alive to months not years.
After the ultrasound I headed straight to the oncology department and waited for my Dr. to tell me the news.
He started by telling me that my tumor was a very rare type. Micropapillary. Don't google it. It will upset you. He said it was 3.5cm which is smaller than we'd thought but he said at least 7 lymph nodes were involved so it's good were starting chemo in 4 days. This all made me very uneasy, but what could I do.
Jason was supposed to be at the appointment but got tied up through no fault of his own, so I sat again alone, trying to process this. Writing words down that didn't mean anything. Stage 1 node, Stage 2 node...either way they're all coming out. Chemo will hopefully obliterate them all.
He said, "We are doing EVERYTHING". Chemo. Immunotherapy. Radiation. Hormone therapy. EVERYTHING. Then he said, we're still aiming for a cure.
He said 1 out of 3 people in their lifetime will face chemotherapy. Then he told me I do not have cancer in any of my organs. Small victory. He said this is good news. Funny I didn't feel happy.
He then told me about the prescriptions I'd need to take before chemo. About keeping my stress low and I told him about pain I was having in my breast and arm. He seemed a little concerned about it but asked me to remind him in two weeks if it was still there after my first round of chemo.
Then he left. Jason came then, disappointed of course he missed it. But in time to come with me up to the chemo suite for a little tour. They showed us around and where I'd sit and where the bathroom was. And there were people there. And some looked really sick and all of them were bald and some looked not so sick and it just terrified me and I wanted to go home and crawl into bed and never come out. I wasn't sure I could do it. But I have to.
We left and went to the grocery store. I wanted a steak. Grass fed, organic obviously, but I wanted a steak. And a nice glass of red wine. I wanted to feel normal. It's not like in 3 days the cancer is going to spread to all my organs and blow me up. So we had steak for dinner.
It didn't even taste that good. Not like it used to. The wine didn't either. Everything has lost its joy a little. Material things, food, drink, music. The things I notice more now are how my kids smile, how their little hugs feel and how they still kind of smell like babies. How when they tell me they love me I know I can't stop fighting no matter how scary it seems.
When I tucked them in tonight I thought about the fact that I still have a chance, I can still fight and even though my odds aren't amazing they're not zero.
When I kissed them goodnight they look worried and I tell them not to worry. Everything will be fine, Mommy will just be a little sick for a few months and then everything will be ok. I feel like they kind of believe me, but they aren't really sure. They hug me a little tighter and whisper that they love me and that's when I have to really pull myself together just to get out of the room and downstairs to regroup.
When I go to sleep sometimes at night, before I fall asleep I get a moment of terror that I'm going to die and that my time here is limited and my little girls and Jason will have to live without me. I don't know if this is true. I hope it's not for a long time. But I have to remind myself that today I dodged another bullet. No distant metastasis, and I start chemo in 4 days and that's the next step.
For tonight. I'll watch a tv show. Eat a few raspberries and take some melatonin, maybe some Ativan. I'll try to appreciate that tomorrow I will wake up, and I'm lucky to have the care I do, the support I've had from people all over and the partner I do to hold me together when I'm falling apart.
Cancer sucks for sure. Today it sucked again, but it's another day that I end being grateful for the little laugh I had in the hallway of the hospital when I was speed walking back and forth between pylons with no bra on. And for the little snuggles I get and a whisper "Mama" in my ear.
The darkness tries to creep in to everything if you let it, but if you forget your struggle for even a second, you can laugh like everybody else at the absurdity of life.
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