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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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.

Good Morning, Cancer, Sit Down

“Good morning! You have Stage Four colon cancer. Have a nice day!”

Well, that wasn’t exactly how I was told, but it’s what I heard from the surgical team gathered at the foot of my bed. They woke me up at 7am, and stood at my feet like a hungry gang of ghouls, looking for all the world like everyone’s nightmare.

“It was not what we were expecting,” she said. 

Boy, she took the words right outta my mouth. This was not what I was expecting at all. It’s like everyone’s worst possible diagnosis, Stage Four Cancer. It’s not like I can console myself with, whew, I’m glad it’s not Stage Five! Stage four means spread and this doctor used the word, “aggressive,” to describe my cancer. Ai carumba, my cancer is fighting for agency in my belly, reaching and attaching itself all over the place like a demon octopus. 

Peritoneal disease is what she called it. It develops in the peritoneum that lines the inside wall of my abdomen. Apart from the mass that was choking my colon and not letting food through, there was also spread to my lymph nodes as well as these little tumors sticking to the insides of my belly. At times I think I feel these peritoneum tumors clinging so close to the surface of my skin. It’s not painful, but feels like a twinge, as if saying, we’re here, we’re fear, get used to it.

Good thing it did not spread to my liver! Big whew there. When it gets to your liver, you’re sunk. Even I know that.

mari hospital
I spent a week with a tube up my nose and down into my stomach, emptying out what little was there. This was the grossest thing I endured.

Finally I asked her, am I going to die? And like any good doctor, she demurred. They never want to give you a straight answer on issues they cannot control or predict. If I were a doctor I would have said, “Someday you will die, but it doesn’t have to be from the cancer.” 

Instead, she said. “I don’t want you to have no hope,” before elaborating on the great chemo drugs they have these days and how they can fine-tune the drug cocktails to meet your specific needs. Oh, great, I’m so relieved – not.

Apparently the tumour on my colon and its offspring has be a going concern for a long time, she said. I mentioned how the abdominal paid I’d experienced about eight years before – which led to all kinds of tests like ultrasound, MRI, CT, X-ray, but not a colonoscopy – led them to find a cyst on my pancreas. I’ve had a gastroenterologist perform an endoscopy me every other year to check its expansion, which is not happening fast. How did he miss this?

Finally, her most burning question. “Have you passed any gas yet?” 

Farting, I learned, is their obsession, being the biggest indicator that my system is working again.

“When you fart….”

 “I’ll call the newpapers…

“That’s when we know the operation was successful…”

“So, no fart, no good.”


She asked if I’ve been walking, which she advised is was the best way to get my system flowing. I asked her about massage, like the kind you do on constipated babies. She nodded, saying, “It couldn’t hurt,” being hardly an endorsement. Couldn’t hurt? Damn me if it didn’t help later, a lot more than walking these hallways. My daughter sent links to posts on baby massage which hubby used to rub my tummy the right way, and it did help. I could feel movement. I also self massaged. It was like being pregnant, or that scene in Aliens (you know it). I told the team days later that they should be advising massage to patients like me. That would give visitors something to actually do instead of just sitting and offering comforting words.

Anyway, after the ghoul squad, er, surgical team left, I had myself a cry. Not something I do much anymore so I tried to keep it to myself. A hard call when you are sharing a room with three other surgical patients. I tried to weep softly but I couldn’t help knowing that they could hear me and might be reminded of their own diagnosis, how they responded to their bad news. The day I was admitted, the one lady, Rose, was getting her bad news from the surgeon himself – in the civilized middle of the day – and it sounded very serious, especially in Chinese. Her family was there to discuss it all, but I didn’t hear her crying. 

Then, I had to call my husband, Bill, and when he arrived at 10am we called our daughter, Tara, in Washington, DC. She was upset but has kept positive from that moment on, bless her. Bill admitted that he’d had more of an idea of the seriousness of my condition. While he waited for me outside post-op, he spoke with a doctor who’d been on the surgical team who reviewed my case. He sat with Bill and relayed the details, but didn’t use the words, Stage Four. Yet the meaning was there. So when I was literally the last body out of post-surgery – which was so full when I arrived late to the party, in my haze it sounded like the floor of the stock exchange – he escorted me up to my room, lips zipped big time. I was so out of it so I sent him home, but the poor guy had to deal with this knowledge at home, all alone. Must have been hell.

Another person to call was my mother. She’s 99 and suffering from some dementia, but living in a nursing care home has been good for her. My sister lives nearby and with a smart phone, is the conduit to face time sessions with Mom. This time we just called her land line, cuz seeing me might have been too scary. We talked about the surgery, how well it went and all. The question among us was, what to tell her about the cancer. She’s very old, has cognitive problems, and tends to worry. So if we informed her of the cancer, she would take it hard and descend into a rabbit hole of worry and despair. After all, she already lost one daughter to cancer. This would be the most horrible deja fu for her. Dealing with another cancerous daughter might kill her. On the other hand, if we told her and she forgot, as she often does for recent news, it would make for awkward conversation later when I mention it and she says, “you have cancer? I didn’t know that.” Ultimately, we decided not to tell her at all about the cancer. But the way she keeps living onward and upward, my biggest fear is her outliving me.

mari scar
My big fat scar went right through my belly button. Oh well, one less orifice to keep clean.

The other thing I had to deal with in my own stage of grief was anger towards my doctors. I mean, back when she was sending me for all of those tests to find the source of my abdominal pain, was why didn’t my GP send me for a colonoscopy? Damn, even if they just found polyps I’d have been happy. And then, I go to a gastroenterologist, who does the damned tests, and even he does not suggest a colonoscopy. And I was about 50 at the time! What, what, what, doctors? Why didn’t you see the writing on the wall?

Like I said, Bill had been advocating a colonoscopy for years, but I wasn’t interested in pursuing it. I could have asked for one, but I didn’t. So, as they say, that’s on me. 

I also remembered the rug I bought in 2008 of which the backing dissolved into a fine dust. I didn’t know what was going on and I used to lift the rug and vaccum that stuff up. The Coit guy said it was latex, and he shrugged as if that was ok. Now, I wondered what was contained in that backing material. I spoke to several labs to see if they could test samples of the dust, and the information they gave me sounded grave. That dust could have been rising up through the carpet with every step and stomp, exposing us to these chemicals. Years later, Bill is operated on for, first prostate, then breast cancer. Results being, whew! All good, no spread. We caught it early. Then I come along with this motherfucker of a cancer that made me loose a portion of my intestines and has spread itself like evil fairy dust to float around my belly. But not to the liver! Sometimes I joke to Bill that my colon cancer beats his prostrate and breast cancer, like a full house beats two of a kind.

A little over a year ago I wondered if I would lose him to cancer. Now I wonder if he will lose me.

Given all that, I have to wonder if I was the architect of my own demise.

So, there was all that to kick myself over as I lay in bed, day in day out, recovering from colon surgery.