After my first psilocybin mushroom experience I was able to see my cancer as being in a box on the floor beside me instead of the black cloud that had enveloped me for so long. All of the anxiety and hopelessness that I had been feeling was gone, at least for now. I could breathe again.
I started chemotherapy with the hope that it would shrink the tumour enough so that it could be safely removed. I was told that it may not work, but this was my best shot. If it didn't work I'd have about 6 months to a year to live. It was a bit of a shock to find that out, considering that I thought I was going to see my oncologist for a quick catch-up visit and really didn't want to take time off work to go. I had told Glenn not to worry about coming with me, so I was alone when I got the news. My first thought was "How am I going to drive myself home" and the next one was "I guess I better get my hair cut before all of this starts again." Weird, I know.
The picture on the left shows me on my first day of chemo. I bought it especially for the occasion. If I have to be back here I may as well laugh about it. Or fake it till I make it. Truthfully, I didn't know if I was up for all of that again and the thought of ten or twelve more rounds of chemo was pretty depressing. I was NOT happy to be there.
A few weeks after that picture was taken I was back in the hospital, with a high fever again. A doctor in the emergency room introduced himself as the 'hospitalist', which was a term I had never heard before and both Glenn and I thought he said hospice. Our hearts skipped a beat before we realized that's not what she had said, and we burst out laughing when tDoctor explained that all that meant was that he was my Doctor while in the hospital. Phew!
A day or so later I was wheeled up to the Oncology ward where they finally had a bed ready for me. As the orderly was pushing me into the ward there was a hallway to the right that said Palliative Care, and as it was coming closer and closer I was saying in my head "please don't turn there, Don't Turn There, DON"T TURN THERE!" and then we were past it and into my room at the end of the hall. A beautiful room with a big window looking out at the mountains and trees outside. I felt like I had just hit the jackpot. I was more excited about that room than I was about the swanky condo we stayed at in Maui just over a month ago - living in the ER for a few days definitely lowers your standards.
The next day I woke up feeling much better and ready to go home (but I just got here!). I had a shower and washed my hair, but when I was rinsing it I noticed an alarming amount of hair in my hands and on the floor of the bathroom, instead of on my head where it was supposed to be. I have always had a head full of thick, straight hair, and I was more than a little vain about it. Now I was losing that too? "No, No, No, this can't be happening! THIS IS NOT FAIR!!" I sat back down in bed and started running my hands through my hair and by the time Glenn got there with my morning coffee I had a big pile of hair in my lap and was on the verge of tears. I couldn't see what I looked like but I assumed the worst. The last thing I wanted to do was get up and go look in the mirror. Then he took a picture and showed it to me - I looked totally normal. Oh yeah, I forgot, I have A LOT of hair. That was a Friday though, and by Sunday I was tired of it falling out everywhere. My recliner looked like it needed a shave and a haircut, and every time I tried to eat or drink anything it had hair in it. ENOUGH! Time to get the clippers.
I had lost a little bit of hair the previous year, but with a little strategic combing and a lot of hairspray I was able to cover it up. I'm not sure that I could have handled being bald the first year - I feel like it would have been too much. This time around I didn't feel as sick and frail as I did the first year, so I think I handled the hair loss fairly well. I made a mental list of all the pros of being bald: I didn't have to waste money on haircuts or hair products. I saved a ton of time not having to do my hair in the morning. Just one swipe of the towel across my head and I was done. That was kind of a treat. I ran a little experiment for the first few weeks to see which hair would fall out first - the rest of the hair on my head, or on my arms and legs. It was all very scientific with the same variables - using the same shampoo/body wash and the same number of swipes with the towel on my head as everywhere else. I kept the kids abreast of the situation daily and we had fun with that for a while, but it was all my way of coping with being bald. I remember the first time I felt a rush of air on my scalp. It was such a strange sensation that I'd never experienced before because I was born with a full head of hair. People knew I was sick just by looking at my bald head and even strangers that I crossed paths with were nicer and more helpful. Ahhh, the cancer card - I am not above playing it, laying it on the table when it suits me.
Even though my mushroom experience helped me to live without that huge cloud hovering around me, I was still struggling with making the decision of whether to go through surgery again. Dave suggested Jon Kabat Zin's book "Full Catastrophe Living", which is the Mindfulness Based Stress Reduction (MBSR) program he developed at Johns Hopkins University. It is an eight week mindfulness based meditation program that helps you to live and deal with pain and suffering. I spent the next 8 weeks faithfully working through the program and then continued in my meditation practice every day after that. I was suffering. I didn't want to go through another surgery, this one bigger than the last. I had already lost so much. Now I needed to say goodbye to my bladder, because the cancer had moved there. It meant that I'd be double-bagging it - I already had a colostomy, now I had to have a urostomy as well. I had to have a hysterectomy as well, which I was fine with. Pretty sure that equipment was covered in dust and cobwebs by that point anyway.
The day we found out that news was one of the hardest days we'd had. We met with a new specialist in Vancouver, a surgeon who had experience with this particular surgery. A surgeon who turned out to be a lovely, kind and caring man who was just the right fit for me. It was devastating news to hear, and on our way out of Vancouver we pulled into a park and just cried. Then we drove back home and had dinner with our friends, who held us and cried with us.
I spent the next few months mentally and emotionally preparing for my surgery. My friend Lorrarine, who is also a therapist, was a huge help in that journey. I just needed someone to talk to, to help me work through all of the emotions I was feeling, and felt like I needed professional help this time, and from a woman. I spent time thanking those parts that had served me well over the years, and saying goodbye. Not a cold hand-shake and a gold watch kind of send-off either. There was a lot of tears and crying, asking "Why is this happening to me?"and "Is there another way?" The conclusion I came to was "Why not you? What makes you so special that you should never suffer or feel pain?" which actually helped. I started to see myself not so much as a victim but just as someone who was going through some stuff. Really horrible stuff, but no worse off than a lot of others.
Then the pandemic happened. I would have to go through the surgery alone, without Glenn or anyone else there for support. Two weeks in the hospital by myself, without family, recuperating from a massive 13 or 14 hour long surgery. I was scared. What if I have another seizure and no one is there to help me? What if I die on the table? The surgeon's office would call me on a Monday morning, giving me a surgery time for that week. Because of COVID and the uncertainty it was causing in the hospitals, they only found out their surgery times on Monday morning for that week. "I need more than two days to mentally prepare!" I kept telling Debbie, his assistant. Finally, in the beginning of May she said "Why don't we just settle on a week towards the end of May, and you and I will both know that it's happening, even though I can't book the precise day till the week of?" Brilliant! So my surgery was eventually booked for May 20th, 2020.
I showed up to the hospital around 5 am, and I think it was late that night when I woke up in the recovery room, looked at the clock and said "Huh, I'm alive" and went right back to sleep.
The next two weeks were probably two of the worst I had experienced so far. I was alone, other than the first two days post-op when Glenn was allowed to sit with me. The first week I was glad to be alone, frankly. It's hard to rest and recuperate when people are visiting all the time, staring at you, waiting for you to reassure them that you're ok. I usually love it when people visit me in hospital (they usually bring treats), but not this time. I didn't have the energy and needed space. I had tubes coming out of every appendage and orifice, it seemed like, and had terrible nausea. Our friends had made a picture book for me with lots of memories and photos of all of them and stuff we'd done together over the years so that I could feel that they were with me even if they couldn't visit. I spent hours studying all the pictures and reading every note they had written. I also realised pretty quickly that the book was a great way to get my nurses and whoever else wandered into my room to stay a while. I think just looking at the pictures reminded them that I was a human being who had people who loved her. I was sick and scared and needed some company once in a while. So I left the book open on my tray table all the time, waiting to suck the next victim into my lair.
Most of my nurses were great, but I had one that I didn't like. She was bossy and insisted she had to show me how to take care of my colostomy, even though I'd had it for more than a year. I was managing just fine and could have taught her a thing or two, so I let her know exactly what I thought of her plan, and I have a feeling she didn't like me much either after that. Then she started telling me that if I didn't start eating I'd have to have a feeding tube put down my nose again. I outsmarted her though - I started to flush my meals down the toilet. We were both happy.
Finally the day arrived that I could go home. I was finally past the nausea and the only thing left to do was remove the drainage tube from my abdomen and the pic lines in my neck and arm. The pic lines were no problem, I didn't feel a thing, but every time the nurse tried to pull the drainage tube from my stomach my muscles would tighten up and she couldn't get it out. I had been obsessing over that drainage tube for two weeks. I had an abdominal drain after my surgery almost two years before and I remembered how it felt. It was not pleasant and was the number one reason why I didn't want to go through surgery again. Finally one of the surgical residents arrived and said he could do it one of two ways: he could give me a sedative and wait 45 minutes or so, or he could just yank it out now, my choice. Well, after two long weeks in hospital I chose the latter. I just wanted to go home! He got everything ready, and then asked me where I was from. Just as I was answering he grabbed the tube and yanked it out. Ugh! You know the feeling you get in your stomach when you drive over a hill really fast? That's what it feels like, times 1000. I hate that feeling and let out a few choice words, but I was finally free. I went downstairs, found Glenn waiting in his brand new truck, and as soon as it started to move I barfed everywhere. Baptized his new truck in green bile. Even filled the cup holders. Not bad for someone who's barely eaten in two weeks.
Once I was finally home it took another six weeks or so just to feel somewhat human. The nausea started again when I was home and I could barely eat for another three or four weeks. Finally our daughter Noa came over with a joint and insisted I smoke it. I took one puff and promptly threw up from the coughing fit it caused, took another few puffs that night and a few more in the morning and that was it. The nausea was gone and I started eating again. Thank you cannabis! I had daily visits from the home care nurses to change all my bandages and dressings and to make sure everything was healing properly. My surgery was on May 20th and I finally was able to take a shower on July 2nd. If you don't believe a shower can be a life changing experience try sponge baths and washing your hair in the kitchen sink for six weeks. It was glorious!
Life was suddenly worth living again and the cancer was gone...