There Goes That Idea

Been a while, got a lot to share. But first, I have to correct myself on something I wrote back in April. 

In Chemotherapy is Not as Bad as I Expected I posited that modern medicine has improved to point of making chemotherapy more tolerable and the side effects more minimal, that chemotherapy might become me. If this blog was printed on paper I would literally eat my words. Cuz now, I am so roiled with peripheral neuropathy, my feet feel like I’m walking barefoot on ice and my fingers feel close to paralyzed. Meanwhile, electricity courses through my veins like hot sauce, surging and vibrating at random moments. It was explained to me that this is because my body is working so hard to preserve my organs that it hasn’t got time to help my extremities. I hate neuropathy and, pleasant as the nurses are at BCCA, I hate chemotherapy. It sucks. And I want to get as far from it as possible.

Another startling side effect was the build up of fluid in my left lung that left me breathless for much of July and unable to breathe deep without clenching my chest. I should gone in sooner, but eventually I went to the ER at St. Paul’s for a CT scan and they told me about the fluid and set me up with the Radiology Dept to have it drained. I’d forgotten that in June my oncologist said that I had some fluid in my lung, but when she put the images side by side it was clear the small amount had become a large amount. So when I went for the drainage last Thursday, I was shocked to learn I was carrying around 900 millilitres of fluid in the organ I’m trying to breathe through. No wonder I couldn’t catch a breathe! My lung was flooded.

Ok, so that happened.

Way back in May my doctor proposed some surgery to scrape the tiny tumors off of my peritoneum once and for all, to release me from the grip of chemo. First though, they would perform a laporascopy to see the stomach wall from the inside. Apparently CT scans don’t pickup objects tinier than 3 mm and these puppies might only be 1 mm. The peritoneum surgeon (one of two in BC) told me I have many, many of these 1 mm tumors, which came as a shock. All this time I thought there were just a handful. Now, I’m hearing of a crowd scene. So that is what they will look at to determine my suitability for the big surgery to remove them all.

The upside of the laparoscopy was taking a break from chemo. They wanted to clear the drugs out of my system before going in. So, I got to enjoy a month without chemo drugs. But still, the neuropathy remained unabated, dammit.

The date for the laparoscopy was set – for my birthday, July 24. Actually, I had to check into VGH on my birthday to get prepped for the procedure the next day. Only one nurse wished me happy birthday so I had to contend myself with all the lovely best wishes I got on FaceBook.

Next day, the surgery went well. The diagnosis did not. Turns out, my surgeon (#2 of the two in BC) said it was not just a crowd of tiny tumors on my belly, but a vast field of tumors broadcast across the expanse of my peritoneum. Like a field of dandelions, she said. So many that the surgery would not work for me. Sorry.

dandelion field

If my tumors were dandelions they would look like this

But at least I got a free hospital stay for my birthday!

So, that shoe has dropped. Now, I’m re-thinking all my curative angles, coming up with more ways of keeping those tumors at bay. Re-examining my diet, various supplements, my cannabis program, and exercise to help me fight the buggers. I’m open to anything at this point.

The other shoe to drop, probably next week, is the results of tests from the lung fluid. My oncologist warned that it could contain cancer cells that traveled up from my gut. If that happens then I will have not one, but two cancers. Lucky me, I could start a collection!

So that’s it for me. Still here. Still fighting. Just trying to give myself a little more time on this earth.

I hope you are all well and happy.

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Sweet Note From a Fellow Chemo Patient

Compared to the often funerial atmosphere of most chemo rooms, my last treatment felt like being at a party. While I was snoozing there was a change of chemo patients in two of the four occupied chairs, and encouraged by our very chatty nurse, Tina, the conversations among them and Bill just rippled. In my somnolence, I could hear everything, though I don’t remember the exact words.

Finally, I pulled off my eye covering and joined the party at the point which the single guy took off his headphones and said he was listening to Gordon Lightfoot, the Canadian singer/songwriter who had just died the day before. Our nurse, in her thick Jamaican accent, admitted she had never heard of him. Groans of pity all around.

The guy in the chair next to me was with his wife and they told his story, that he was not helped by his previous treatments – including stem cell – and was now trying chemo. At some point I asked the question I rarely ask any fellow patients: what is your diagnosis?

Leukemia. A rare form of it I can’t remember now.

His journey was not going well and I sensed a bit of desperation in his voice. I told him about my sister and her leukemia from 24 years ago. I’m not sure it made him feel better.

After my bottle was detached and we were prepping to go him, the guy’s wife handed me an envelope and inside was this card written to me. Hard to know if he wrote it while I was in the bathroom or in advance to hand to people like me. Either way, I thought it was very touching that he would reach out this way to let me know, “I got this.”

This kind gesture made me think maybe I should go to some of the group cancer therapy sessions on offer. I’ve been kind of cloistered here at home these last five months and thinking I really should get out more, hang with other cancer patients, maybe learn a thing or four about how to live with cancer. Who knows? Couldn’t hurt.

Thanks to David, I feel like I can do this now.

Chemotherapy is Not as Bad as I Expected

“You’re really looking good,” Billy raved as we huffed and puffed uphill on Heather Street after a walk through the Olympic Village and along the seawall. Beneath my puffer jacket and fleece vest, I carried my baby bottle infuser now half full of chemo drugs as it fed into the porta-catheter in my chest. My ninth chemotherapy treatment was just yesterday, but I felt a sunny afternoon in Vancouver was too good to let pass without a long walk. Bill is quite attentive and offers to help me up the hill. I smile. “Thanks honey, I’m fine.”

And I do feel fine overall. At this point I feel like I’ve mastered this chemo thing with all the anti-nausea meds, symptoms, blood testing that goes on. However, on three different occasions I barfed while sitting in the chair, but I think that’s because I didn’t take the pre-session meds at the correct times. After the first session my intestines roiled excruciatingly and laid me up for a day and a half. Later that week, I got quite nauseous, but I recovered quickly after my grandson showed up. 

mari in chair
Greetings from BC Cancer Agency!

Other than that, my symptoms include what I call tingle fingers, toes, and nose known as peripheral neuropathy, which is worse in the cold weather. My digestion used to be quite lumpy, but has improved lately. I used to have diarrhea starting about 5 days post-treatment, but have been using Imodium to plug me up. I was told this drug cocktail would not make my hair fall out, but lately I’ve been pull it out in handfuls. I’ve had a few mouth sores. Every time, my palate is shot for the first week after treatment. And forget icy cold drinks and ice cream. They make my tongue sizzle. Sometimes my balance is thrown off and I get twinges of electricity from my feet. And my nose, oy! It’s running all the time. Sometimes it bleeds a little. On the upside, instead of the dry skin symptom, I think the chemo drugs are making my skin more supple and soft. I sleep for 10-12 hours a night, so no problem with fatigue. Chemo brain, yeah, got that.

What I do have is a fantastic appetite, the loss of which is a famous symptom of chemo. I would have thought the trauma of being starved in the hospital for a week would have worn off by now, but no. I can’t stop thinking about eating. My only problem is overeating and getting it digested. But I’ve gained about 5 pounds in the last month, so yay me! 

Ironically, I think chemotherapy rather becomes me.

My overall feeling of well-being I think is attributed to two things: The first is the advance in medical technology. I think the anti-nausea meds are better than, say 20 years ago, which was when my sister was fighting leukemia. And I believe the drug cocktails are milder and better able to target the tumors. And as my daughter Tara reminds me, I’m lucky to have a super common cancer that doctors know all about now and I believe it being how colon is second to lung in the top ten of cancers. I don’t know when they started with these baby bottle infusers, which I carry in a jaunty shoulder bag for two days after treatment, but it’s like a beer back to a tequila shot. Slower to consume, less strength. I’m spending three and half hours in the chair, twice a month. I remember Cynthia being in the hospital for at least a month, doing her treatments in 1998. So I think this is not your mama’s chemotherapy anymore.

The second thing I think is helping me is all the cannabis I’m consuming. Not smoke so much as dropping cannabis oil isolates of THC/CBD and CBG under my tongue. Coming from the cannabis/hemp industry I quickly got advice from old movement friends, Ruth Shamai and Mikki Norris, who inundated me with new information about cannabinoids (I’d never heard of CBG!) and they recommended bunches of resources.

I made an appointment with Dr. Jeffery Hergenrather in good ole Sebastopol, California, down the road from Forestville. His recommendation was for 150 mg of oil per day – 50mg CBG, 50 mg THC, and 50 mg CBD. He advised taking 50 mg 3 times per day, as in morning, afternoon and night, but I’m sorry. I don’t do mornings. Mornings are for sleep. So instead I do 75 mg twice per day and I have my bottles on my desk behind my computer so I can remember to take them.

my cannabis oils
I’m only working on the front two bottles right now, but for extra sleep I’ll have a bit of the Snake Oil THC.

When I followed up with Dr. Jeff about how good I felt, he said that was likely due to the effects of the cannabis. My sleeping well, good appetite, lack of nausea he said was all boosted by cannabis. But, what I wonder is what it’s doing to kill the tumors. Empirical evidence points to cannabis as a cancer curative, so there’s that possibility. My most recent CT scan showed my tumors are not growing and the cancer is “behaving itself.” My oncologist is exploring whether a little laparoscopy might scrape those well-behaving tumors off my perenium.

So, what’s helping me? Is it the chemo or the cannabis, or both? Who knows?

Again, I’m doing fine. Back to work on WordPress. Getting back to a new novel. Working with Petra on my ghost story. Trying to sell the house in Oliver. Those are all perfect distractions from the cloud on my horizon, and keeping busy helps me pass my days with a sense of hope.

Thanks again to all my friends and family who are rooting for me and helping me get through this. And especially Bill, who has been my warm, fuzzy rock. I wouldn’t feel as good as I do with out you all!

Still, my mom knows nothing about my cancer.