The C Word – Part 13
First, some good news!
Last week I had two scans: and MRI and a CT scan. I met with my oncologist last Friday and he confirmed: MY CANCER IS SHRINKING! And my CEA number which monitors the activity of cancerous cells in the body has dropped down to a mere 45! If you recall, it was up to 160 over the summer. So we are DOING IT! But we have to KEEP ON doing it. To keep doing everything that has led me to this place. To keep up the good work. Dr. J recommends three more rounds of chemo to shrink it further. Then, most likely, I will be off chemo for January and will have surgery in February. Not scheduled yet, but that’s the general forecast.
On chemo days, I’ve asked friends and family to send love and to help visualize the cancer cells getting eaten up by Pac Man and Hungry Hungry Hippos. Well, whatever we’re doing is working, so I plan to keep it up! Next round I’m going to try a visualization with my favorite pet aside from my cats, Nibbler the Niblonian from Futurama. He eats EVERYthing and poops out dark matter which they use as rocket fuel. Sounds like just what I need!
Waking up baked.
A lot of people are fond of the ol’ “wake and bake”. Well, I wake up every morning PRE-baked.
It’s due to the Phoenix Tears aka Rick Simpson Oil I take every night. You’re meant to increase your dose gradually over time. I started with little drops the size of a grain of rice. Now I’m up to a blob the size of a cashew half. I try to time my dose each evening so that it starts to kick in just as I’m falling asleep. If I take it too early, I risk the chance of getting high before I fall asleep, which sends my brain into an overactive state. I already have an over-active imagination, and the RSO magnifies that activity and can sometimes send me down a dark spiral of thought, and then I can’t get to sleep. If I take it too LATE in the evening, I wake up super high and can’t function until it wears off. So, early morning appointments are tough for me, unless Doug drives.
One morning I awoke with a start. I had an early appointment, but I’d forgotten to set an alarm. Now I was running very late. I jumped out of bed in the way I used to do, and IMMEDIATELY was accosted by spots of bright light and a swirling darkness which gathered around the periphery of my vision and began closing in. Everything sounded as if it were miles away. I steadied myself by grasping a beam of the wooden shelving unit but my head swam with a dizzying sickness and the darkness eclipsed my vision as I went down. Hard. I took out a folding chair and table which were perched, leaning against the wall next to the shelving. Doug heard the crash and called out. “Sweetie? You ok?” I was not.
I managed to pull myself up to standing amidst the swirling shapes around me, and promptly went down again, acquiring the adornment of an impressively bruised knee and elbow. Doug helped me recover my bearings a bit, but my head was still swimming and once I made it to the sink, I promptly vomited.
So yes, my friends, there IS such a thing as being “too high”.
Throughout my journey so far, I have felt incredibly supported and cared for. From family to friends to my care team and beyond. I am so grateful for the generous gifts from friends and family which help me care for myself. And aside from switching oncologists, everyone I’ve come in contact with in the Canadian Healthcare System has been so caring, nurturing and helpful. Every doctor, nurse, technician, porter, or administrative agent has been there to help me on my personal journey. And let’s face it, each person’s journey through this disease IS so personal. No one has the same experience. There are so many variables to consider. Each person has their own individual health history and concerns that can swing their experience in different directions. So many different types of treatments and support networks are available that at the start of the journey, it can feel quite daunting. Sure, you’re given pamphlets and booklets and handouts and teaching sessions, but those don’t make one feel at ease; it’s the PEOPLE. And so far my experience is that the people I’ve come in contact with throughout my journey are not just healthcare WORKERS but HEALERS.
Healers go above and beyond. Healers who care. Healers who were drawn to healthcare as a profession because of a calling, not because of the potential for massive financial gain. That, I would say, is a big part of the difference between our socialized medicine system, and the completely commercialized medical system in the USA. I know there are plenty of true healers and those who chose medicine as a calling in the States, but the system in the USA itself is designed as a cash-cow for those at the top of the healthcare food chain. It’s just harder to find integrity in a system based on corruption.
When my chiropractor heard of my diagnosis, she put me on pro-bono treatments for the rest of the year. I didn’t ask, and she certainly wasn’t obliged to do any such thing. But she did. So, I can see her every week for treatment without adding that expense to the list of my worries.
When I was experiencing neutropenia, which is the body’s inability to produce enough neutrafils and white blood cells, and my oncologist prescribed the Grastofil injections to boost them, I received a phone call from a department of the healthcare system which exists to assist Canadians with expensive prescription costs. Prescriptions, by the way, are not covered by the healthcare system, although the pricing of prescription pharmaceuticals is exponentially less expensive than the reprehensibly villainous pricing in the USA. Also not covered are dental, chiropractic, massage, and other specialized treatments. You can obtain “extended benefits” from your employer or directly from a provider. This agency calls you and asks if you have any such benefits. Then, they contact your benefits provider(s) FOR YOU, to find out how much will be covered, and then they supplement the remainder through their programme, if necessary. Maybe I’m skeptical, but I can’t imagine that happening in the USA. I mean, there are probably programmes in the States to help people with prescription costs, but I’m guessing you have to go SEARCHING for them, rather than the program calling YOU directly! I was impressively floored.
The first month’s worth of Grastofil cost over $1,000. I use five ampoules per treatment; one per day starting on the 4th day after each chemo appointment. Fortunately, we have two sets of extended benefits: several years ago, when my husband Doug was between jobs, I purchased coverage for us through Green Shield, and once he started his new job with his new benefits from Chambers Health, I opted to keep both plans…juuuuust in case. Let’s just say it was one of the best decisions I’ve made. (I’ve mentioned the cost before, but I pay just $175 a month for Green Shield coverage for BOTH of us.) Annnnnd – the Grastofil was completely covered through our two benefits plans. The plans also cover a substantial amount of the cost of my visits with my counselor and Naturopath. The naturopathic medicines are NOT covered. Those I must pay for out of pocket (about $500 a month right now), but having all those other costs covered is such an ENORMOUS relief. It enables me to focus on my main job right now which is HEALING, rather than constantly hustling to bring in money. Oh, don’t get me wrong, I’m still hustling for gigs while I’m able to work and I’m so grateful that my husband has retained his employment throughout the pandemic, but the knowledge that we’re not going to go bankrupt from medical bills is an incredible comfort. Remember this story the next time someone tries to convince you that government-funded medical care is a communist plot. It’s not. It fulfills one of our most basic human needs with human dignity. And while I agree that more traditional and alternative medicines need to be integrated more fully into the system, SOCIALIZED MEDICINE FTW!!
As I’ve mentioned, my energy has been great throughout this process, aside from those first couple of cycles. I attribute my good fortune to my devotion to my nutritional health along with my naturopathic treatments. But after my sixth round of chemo, I’m starting to feel a bit of fatigue. It’s my understanding that the effects (and side-effects) of the chemo are cumulative, so that does make sense. I’ve encountered a few days when my legs just feel like noodles and I can’t do anything but rest. My hair has begun to thin a bit too, which makes brushing one’s hair a dismal event. I dislodge gerbil-sized clumps from my combs and brushes at each grooming. When I run my hands through my hair, several stands will loosen and fall. My hairs are everywhere. Apparently, with this type of chemo my hair may thin, but I won’t lose it. So again, I am grateful that I’ve always had such thick hair. I always said I could STAND to lose some. Well, here I am!
The other side effect is less fun. Hemorrhoids! To all the gals I’ve known who have borne children; I understand this is a commonality for pregnant women, and dammit, I salute you. Because man oh man, are they a literal, a figurative and a RESOUNDING pain in the ass. They’re frustrating and make you cranky as hell! I had mild ones occasionally before my surgery, but between the chemo dehydrating me and the anti-nausea medications constipating me, it’s hard to get enough hydration into this ol’ “bag of mostly water” (which is what our bodies are) to prevent the ‘roid rage flaring up and literally ripping me a new one. Luckily, I no longer have any modesty about my bodily functions so I told my oncologist about it. He checked out my bum and gave me a prescription for some topical ointment to help it heal faster. So with my creamy magic wand I now cast an ass-y magic spell and say, ‘ROIDS BEGONE!