Hi again, many moons after the last post. The last post where I boasted about excellent monthly blood work while taking a chemo pill called Revlimid aka lenilidomide, thalidomide's more popular cousin, which for the most part kept the myeloma in a drug induced remission with only a few, manageable side effects. Those 2+ years were good years! I worked at a busy bakery in town; danced and taught Nia classes; continued to grow, make and sell herbal products in a great little shop in town and by mail order; worked a contract at the library; found a part time, fulfilling dream job at the local vet clinic; thoroughly enjoyed a family trip to Italy in March of 2019, all while still "having" Multiple Myeloma (cancer of the plasma cells produced in the bone marrow). I was able to forget that diagnosis here and there, but like this type of cancer, even the knowing never fully goes away. Blood was tested monthly for which I am so grateful, and I was able to meet with my oncologist over video link every month instead of driving to Kamloops only to hear "you're doing great". Life seemed normal and was good!
Cue The Year 2020, full of unprecedented surprises to say the least. The cancer relapsed, or rather, the handy chemo pill seemed to stop working its magic. In January, the unwanted M protein (a marker for Myeloma) crept back into my blood work, but not at any alarming level. We know it's always there even if undetectable, so I didn't worry. However, that number climbed steadily from 1.3 to 4 to 7 over 3 months. In mid April, my naturopath who is hospital trained, specializes in cancer treatment and is experienced in treating Myeloma, plainly said to me : do not let this get any worse, start aggressive treatment asap! "I've seen this kind of number game go south quickly". Chilling statements from a naturopath. The consequence of not treating it is apparently irreparable damage to kidneys, liver, heart and bones. My oncologist, of course agreed. On May 7th, reluctantly but with head held more or less high, I walked alone into the Royal Inland Hospital in Kamloops, armed with a mask, colouring book, water bottles, snacks and devices to keep me entertained. No visitors allowed. Ah, Covid.
I recognized many of the nurses but more surprisingly, they recognized me too! One even asked how my son was doing - does she keep a diary of all her patients and their details? I asked where Mary was (not her real name); oh, she passed a couple of years ago. Cancer. ugh. She was my first chemo nurse and could talk a mile a minute, full of information, tips, stories, but mostly reassurance. I'll never forget her. RIP.
I can't say it was 100% horrible to be there despite the relapse and Covid protocols; these nurses and the environment they create amidst a pharmaceutical cornucopia, IV poles, vital sign machines and various things that go beep, are remarkable. They make the weekly visit doable. They make it more bearable. Their cheer and professionalism are to be commended. These nurses and the whole staff on the 8th floor are angels and saints, truly heros.
I've now completed 8 weeks of Chemo Light as I call it, (aka CyBorD) but added to that is a new to me drug called Daratumumab (aka Darzalex), which is in a class of drugs called immunotherapy drugs, so not chemotherapy. Rather, it is a highly effective new-ish medication to treat multiple myeloma. It's a
laboratory-made monoclonal antibody that targets a specific single
protein on the surface of myeloma cells, which helps slow or stop the progression of multiple myeloma in several ways (read more here: https://www.myeloma.org/darzalex). The success is measured by how long remission lasts after treatment, and for this combination of drugs, the average length of progression free remission is around 30 months.
I am slated to do these treatments for 8 months total, this time around. 8x4 treatments/month = 32 treatments. OK then, 8 down, 24 to go!?! Yikes. The idea or goal is to do as many treatments as possible, before the body says no more, in order to get a deeper and thus longer remission. No mention of the stem cell transplant, maybe because of Covid, maybe because I've refused twice. I'd still say "not now", because I'm too healthy to put it all on the line for a possible 1 - 3 year remission with one of those years in isolated recovery from the transplant; I'm just not there yet. And I believe there will be better treatments coming online before I get there. The research budget into cancer treatments is astounding (yet we still have First Nations people without clean drinking water and children living in poverty, oh my heart..). Sorry, I digress.
The good news is that after only 4 weeks of these treatments, the M protein was already too low to measure and my blood work is fantastic. It couldn't be better actually! Both doctors are thrilled. I enjoy a pretty high quality of life considering. I have bad days, but even then it's not as bad as it could be. The worse side effect is a strange, low throbbing / humming vibrating sound in my left ear that sounds not unlike a jet plane about to land, or a tractor coming down the meadow but it never arrives. I've also had a few more grey floaties appear in my left eye. The doctors are flummoxed about these symptoms; we even took a break from chemo for a week to see if they resolved, and the ear thing seemed to dissipate while the eye thing is something I'm just going to have to get used to. The ear thing is back again after resuming chemo, and I'm not sure what that's about. They've reduced my dosage of one of the chemo drugs (Bortezamib). Other than that, I'm eating well (thanks in part to one of the drugs, Dexamethasone - a steroid that makes one eat anything and everything in sight!), and also thanks to cannabis too which relieves any hint of nausea immediately. I have loads of energy on my good days. The herb beds have all had a major renovation and are bouncing back quite nicely after a couple of summers of slight neglect from working in town so much. My herbal business is still kicking, and the pets are ecstatic that their human is home so much. I'm enjoying taking Nia classes when I can, over Zoom and from teachers all over the continent, and am even considering starting to teach outdoors if we can figure out some logistics. I'm about to take a week off of chemo for "good behaviour" (haha) so we can join some friends on the coast camping in the rainforest.
The bad news is that this will be a long and slightly expensive journey, though I can't say enough how many times I thank my lucky stars and parents that I was born in Canada in a time when social medicine is still in effect. One month of Darzalex/daratumumab is $24,000 US. I haven't researched the cost of the other drugs that I'm taking for anyone without health insurance in the US...it's in the tens of thousands, per month.
Anyway, here is a list of my extra costs and supplements:
Prescriptions anti-viral (Valacyclovir) to prevent shingles : $30/month
Supplements* : approx $500/month
CoQ10 ~ to support energy and cardiac health
Zinc ~ to help reduce taste changes and odor sensitivity
Fish Oil ~ to reduce inflammation, support maintenance of lean body muscle mass and support cardiac health
Arnica ~ to prevent bruising/bleeding due to chemo
Vitamin D3 ~ to support immune health and bone health
Vitamin K2 ~ to support bone health and may offer some anti-myeloma activity
Cal-Mag ~ to support bone health in the setting of bisphosphonate
Honokiol/Magnolia ~ help reduce drug resistance, induce cytotoxicity in MM cells; support bone health and help with sleeping
Reishi ~ to support blood counts
Mistletoe therapy ~ for immune system health and may provide anti-cancer activity and promote longevity, and may help decrease side effects of chemo
CBD/THC oil ~ to help with nausea, insomnia and may reduce inflammation
*please do not take any of these without consulting a professional or doing your research especially if you have cancer yourself and/or are taking medications. There are some surprising interactions and contraindications.
Gas/vehicle expenses to drive to Kamloops weekly : $320/month - the Health Bus is only $5 but the timing won't work for every visit unfortunately.
Naturopath consults : $45 - $120 depending on length of consult (by video)/month
total = $895 - $970/month
All in all, and I know this has been said all too often, but it's true : it could be way worse. I am also lucky and blessed to have the support that I have. My loving husband and best friend Jonathan has been my 24/7 support and has shared the weekly drives to Kamloops along with our ever so amazing, generous, kind and fun loving dancing friend Roz who has come to stay with us for not just one but 2 2-week stints, cooking and baking up a storm, helping in the garden and with housework and also driving me to Kamloops = thank you from the bottom of my heart Roz! This would have been way harder and not much fun without you and your company. Roz also created a fundraiser : https://www.gofundme.com/f/support-gillian039s-chemo-trips-to-kamloops?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1
My sister and her partner make the Magic Mineral Broth (recipe below), highly recommended by my naturopath Dr. Jessica Moore, which I feel is truly life saving, and a delicious weekly soup that feeds me through the bad days. Neighbours have dropped off soups. Friends send me messages and call or text while I'm getting my Dara infusion (which currently takes about 5 hours). My parents cheer me on with prayers, love and good wishes.
If there's one thing I've learned this year, it's "you just never know". Life is now folks.
Magic Mineral Broth – By Rebecca Katz, adapted by Dr. Allderdice and Dr.
Jessica Moore, ND
Jessica Moore, ND
A broth that can be transformed to meet a myriad nutritional needs, serving as everything from a delicious sipping tea to the powerful base for more hearty soups and stews. No matter what a person’s appetite, it can provide a tremendous nutritional boost. This rejuvenating liquid, chock-full of magnesium, potassium, and sodium, allows the body to refresh and restore itself. I think of it as a tonic, designed to keep you in tip-top shape. (adapted by Dr. Allderdice and Dr.
Jessica Moore, ND)
Ingredients (A flexible recipe—OK to omit difficult to find ingredients)
Makes 6 quarts
6 unpeeled carrots, cut into thirds
2 unpeeled yellow onions, cut into chunks
Jessica Moore, ND)
Ingredients (A flexible recipe—OK to omit difficult to find ingredients)
Makes 6 quarts
6 unpeeled carrots, cut into thirds
2 unpeeled yellow onions, cut into chunks
1 leek, white and green parts, cut into thirds
1 bunch celery, including the heart, cut into thirds
2 whole zucchini cut into large rounds.
1⁄2 pound of green beans, cut in half.
5 unpeeled cloves garlic, halved
1/2 bunch fresh flat-leaf parsley
One 8-inch strip of kombu (Seaweed)
12 black peppercorns
4 whole allspice or juniper berries
2 bay leaves
8 quarts cold, filtered water
1 teaspoon sea salt
Preparations
1. Rinse all of the vegetables well, including the kombu. In a 12-quart or larger stockpot, add all your vegetables and then fill the pot with the water to 2 inches below the rim, cover, and bring to a boil.
2. Remove the lid, decrease the heat to low, and simmer, uncovered, for at least 2 hours. As the broth simmers, some of the water will evaporate; add more if the vegetables begin to peek out. Simmer until the full richness of the vegetables can be tasted.
3. Strain the broth through a large, coarse-mesh sieve (remember to use a heat-resistant container underneath), then add salt to taste.
4. Let cool to room temperature before refrigerating or freezing.
Prep Time: 10 minutes · Cook Time: 2 to 4 hours · MAKES 6 QUARTS Storage: Store in an airtight container in the refrigerator for 5 to 7 days or in the freezer for 4 months.
Adapted from The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery.
Copyright © 2009 by Rebecca Katz with Mat Edelson, Ten Speed Press, a division of the Crown Publishing Group, Berkeley, CA.
1 bunch celery, including the heart, cut into thirds
2 whole zucchini cut into large rounds.
1⁄2 pound of green beans, cut in half.
5 unpeeled cloves garlic, halved
1/2 bunch fresh flat-leaf parsley
One 8-inch strip of kombu (Seaweed)
12 black peppercorns
4 whole allspice or juniper berries
2 bay leaves
8 quarts cold, filtered water
1 teaspoon sea salt
Preparations
1. Rinse all of the vegetables well, including the kombu. In a 12-quart or larger stockpot, add all your vegetables and then fill the pot with the water to 2 inches below the rim, cover, and bring to a boil.
2. Remove the lid, decrease the heat to low, and simmer, uncovered, for at least 2 hours. As the broth simmers, some of the water will evaporate; add more if the vegetables begin to peek out. Simmer until the full richness of the vegetables can be tasted.
3. Strain the broth through a large, coarse-mesh sieve (remember to use a heat-resistant container underneath), then add salt to taste.
4. Let cool to room temperature before refrigerating or freezing.
Prep Time: 10 minutes · Cook Time: 2 to 4 hours · MAKES 6 QUARTS Storage: Store in an airtight container in the refrigerator for 5 to 7 days or in the freezer for 4 months.
Adapted from The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery.
Copyright © 2009 by Rebecca Katz with Mat Edelson, Ten Speed Press, a division of the Crown Publishing Group, Berkeley, CA.
