The year of 2020 = wow

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!

(us in Venice on a vaporetto)

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

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

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.

Happy New Year and happy news

Hello and Happy New Year to you all!

I hope this finds you and yours well.

First off, thank you to all who were curious or concerned for writing/emailing or calling to see how I am/was over the past year, and also thanks to those who just trusted that no news is good news - such is the case for me! I will cut to the chase and report that I am doing so well that I almost, yes almost, forget that I apparently “have” cancer!! This is fabulous news following the last post, which I just reread = holy crow, thankfully I climbed out of that hole. 

I say apparently and use quotations on "have cancer", because I still refuse to own cancer or have it own me; and perhaps that, along with all the meds, supplements, treatments and overall good health/luck, I am happy to report that I am “in remission”.  Again, why the quotation marks?  Well it’s kinda complicated, or maybe it’s super simple! I have to rewind back to April to have this story make any sense.  

Back then, with the M protein raising it's ugly head and the Free Light Chains climbing into uncomfortable zone, I reluctantly decided it'd be best to go back to the chemotherapy I had done previously, a triple drug plan referred to as CyBorD (cyclophosphamide, bortezamib and dexamethasone).  It worked before at lowering the numbers down to such small numbers they were unmeasurable then undetectable.  But alas, myeloma is not curable, just treatable, and so after a few months off of treatment, it came back.  Anyway, I faced 9 months of this, having decided for the second time to defer the stem cell transplant for a time when it seemed more appropriate.  So, 9 months of 6 hour weekly trips to Kamloops for the 15 min appointment to get the bortezamib injection (subcutaneously), 9 months of weekly blood tests.  9 months = 36 weeks, 36 trips, 36 blood tests.  ugh.  These trips also required getting a driver, so 36 volunteer drivers.  I had inquired at the last round if there was any chance I could have these injections done in Lillooet; no, can't be done, I was told.  36 weeks of feeling like crap for 3 or 4 days to varying degrees, and one good day of which one was the trip to Kamloops.  Dizzy from all these numbers yet?  Imagine how I felt!  

This wasn't quality of life, though it could have been wayyyy worse for sure, but this still didn't seem to make sense to me considering that the myeloma had yet to make me feel ill or cause me harm as far as I could tell; only the drugs had.  Yes, we are trying to prevent harm by doing these treatments, but where's the balance?  So, once again, my Aries self could not rest easy with this and I took the initiative to research my choices.

I’d always been told that I would be offered a drug in pill form named Revlimid aka lenilidomide after the 9 months of CyBorD (9 months since studies show the body can’t take more than that) or post stem cell transplant, which they refer to as a maintenance drug. Within only a month of CyBorD treatments, the myeloma cells were again so low they were unmeasurable, and I thought : why not skip ahead and try the Revlimid?  The main attraction being that it's in pill form, so I could take it at home!  Considering the drives, the volunteers, the potential and real road closures and detours due to mud slides and forest fires, on top of the half week of yuck, I needed to know if this was something I could do.  My naturopath, Dr. Adam McLeod, was encouraging, saying that it was quite a well tolerated drug (despite the horror stories I’d read on the internet!), that it works well for many of his patients and was definitely worth a try especially considering that I was facing another 32 weekly trips to Kamloops.  He had recommendations for supplements and natural treatments that would mitigate side effects as well as work synergistically with Revlimid.  I felt hopeful once again.  My oncologist however was hesitant, only because Revlimid was then considered a second line treatment, not front line and so he had never prescribed it to a patient in my situation.  After I basically insisted that I wanted to try it, and when he really understood how my quality of life was not great for one due to travel time and cost, he went to bat for me, consulting my hematologist, who agreed it was worth a try and then applying for permission from the BC Cancer Agency, which was successful. The timing couldn’t have been more perfect: that month, the BC Cancer Agency announced that Revlimid could now be used as a front line agent.  

I’m so happy to say that now after 7 months on this drug, I am technically in remission = mylema cells are undetectable and the Free Light Chains are within normal range.  Unlike on tv or in movies, my doctor never rushed into the examination room for my monthly appointments to say “Congratulations Gillian, you’re in remission!”  No, it took a few months of my reading my own blood test results where the pathologist reports time and time again : “Normal pattern. No monoclonal bands seen” for me to finally get the guts up to ask my oncologist, sooo, am I in remission?  He hesitantly said yes but that it’s a drug induced remission, meaning that the myeloma cells would raise their ugly heads and the free light chain numbers would climb if I stopped taking the chemotherapeutic drug I take nightly for 3 weeks on, 1 week off.  That's why I say "remission" with quotation marks, rabbit ears.  Sigh...myeloma is not curable, so I keep hearing. Just treatable. 

I am experiencing only a few minor side effects despite the many horror stories from Dr. Google!  Mainly, for me and so far, it’s caused minor constipation, some hives, and a mild tingling in my lips on occasion. The most common side effects are tiredness, which I only experience in the evenings, nerve damage / tingling in extremities, digestive issues and low platelet counts. So far, my platelets are just a titch below normal, and nothing to be concerned about.  The worst part for me for which I am grateful, are the monthly interviews I have to undergo by my oncologist, the pharmacist and online...you see, Revlimid or lenilidomide is a cousin of thalidomide.  For those of you who might be too young to know or remember, "the thalidomide disaster is one of the darkest episodes in pharmaceutical research history. The drug was marketed as a mild sleeping pill safe even for pregnant women. However, it caused thousands of babies worldwide to be born with malformed limbs." Holy crow.

Needless to say the pharmaceutical company makes it absolutely certain beyond a doubt that I am not pregnant (monthly pregnancy tests, yes even at my age), that I am not sharing the drug with anyone (seriously), not giving blood and so on.  I’ll take the monthly interviews over the weekly trips to Kamloops and the half week of feeling like crap, and the long term effects of taking those drugs.   The elephant in the room is what the long term effects are of taking this drug at full dose, and as is with so much of life, we shall have to wait, do our best, and see.

Cancer sucks, in my case not because cancer in itself has ever caused me harm beyond the psychological effects, but the weapons used to fight it have.  I am lucky in that so far as we know, no real damage has been detected.  I am immensely grateful to chemistry however; this drug, along with the supplements listed below, my own healthy foundation, lifestyle, pure luck and sheer refusal to succumb to the C word, has allowed me to lead a more or less normal life while also fighting this disease with relative ease, so far. I can’t express how happy I am for this and how lucky I feel, especially when I read on various myeloma support group blogs and Facebook group pages how much suffering, and deaths there are due to Multiple Myeloma.  For many, Revlimid doesn’t work. For many, it causes many horrible side effects.  I’ve posted my positive experience to give light to others, but it’s time for me to stop reading these horror stories while my heart goes out to those who suffer under myeloma and to their caregivers. 

Prognosis? No one knows, but I could be on this course for years to come, hopefully without experiencing more severe side effects.  Some have been on Revlimid successfully for a decade or more.  All of us myeloma patients await new upcoming treatments that are said to be on the brink of a cure, or at least less harmful treatments, and while I am doing well now, that could change anytime. And do I remain in gratitude and in hope that my “luck” continues.  My naturopath checks in with me every 3 months.  I am also so fortunate to get monthly blood work and doctor’s appointments (now by video link from the Lillooet Hospital!), a little bit of a formality now, but I’ll take it.  I'm on close watch, and I'm grateful once again to be Canadian.

Well back to how I am and let’s leave medical definitions of remission and doctors’ hesitations at the hospital, and focus on what matters. What matters to me is that I am leading a fairly normal life now, once again: my energy levels are great, and I feel incredibly healthy.  My herbal products business continues to keep me busy, I am back to teaching Nia which helps keep me happy and in shape, and I even have a part time job-job, working joyfully at Abundance Bakery in town.  I'm able to be present as a more or less "normal mom" for our son Jamie (normal is not a word I would normally be proud to use!) and that is really all I could ever ask for post diagnosis.  Jamie, or James as he now prefers, is 13, tall, healthy and thriving, attending high school and excelling in sports (he just won gold at his first wrestling competition), and enjoying a regular teen social life now that we are part time in town.

For now, this is good, for now, this is perfect. Again, I hope this finds you well and enjoying life however you can.  I'd love to hear your story if you want to share it...enough about me already!  Aren't you grateful I don't post regularly?!

much love to you all,
gillian

List of supplements  
Curcumin - Curcummatrix 
Vitamin D 
Indole 3 carbonyl 
EGCG
Reishi 
Mistletoe injections (subcutaneous)
Vit B12 injections (intramuscular)
Low dose Naltrexone 
Expense wise, it costs approximately $500/month for all the prescriptions, supplements, injections (see below)~ thanks again to those who have contributed to the fundraising I did last year for the now moot natural treatment plan which has made taking these things possible.

Turn to face the strange changes

 

Short version/spoiler: the myeloma is back to being detectable, i will prob go back on chemo "light" next week

 

Long version: if you really want to know "how it's going" - grab a drink, get comfy and read on!

 
Living with multiple myeloma, as with many diseases i am sure, is one full of doctor’s appointments, blood tests, full body X-rays (aka skeletal surveys), coupled with the unknown around the corner, guess work, and, waiting, lots and lots of waiting (and for you, waiting for an update from me, or waiting for me to get to the point).  Many do consider this to be daunting, stressful to say the least, even crazy making…while others would want to believe it’s exciting!  Some would say “time to get deep into the Don’t Know Mind, some would say Time to be Present with what is, some would say This Sucks!!!  All these things are true.  And my life, and this disease within me, are no exception.

 
I was cruising along for some months, since October ’16 feeling great, not on chemo, and rather content with an undetectable M protein (the baddy protein to be simple), excellent blood work/immune system, lots of energy, no flus or colds, no signs of organ damage or strain, and feeling excited, even making plans.  Many of you have asked, rightly so, did you do or are you going to do the IV treatment plan I raised money for, that was in lieu of the stem cell transplant for the time being? Short answer : no.  Long answer : Well, a funny thing happened while walking the dog in White Rock, BC, where I was for the month of January blissfully accompanying a close family of friends waiting for a baby to arrive (yes this is a funny statement but it’s all true too).  My cell phone rang : my naturopath at the time asked me if i had received the results of my most recent blood work.  Yes I had, and wasn’t it great, i said?  Hmm, he said, well, while most everything is excellent, there was a result he was concerned about, one which i did not get (ah, technology).  He was referring to the Free Light Chain (FLC) reading, which was climbing unbeknownst to me.  It had been 91 at diagnosis a year ago, went down to 10.9 in June after 12 weeks of chemo, and then climbed to 88.5 (mg/L) in January.  He stated that he thought it was time to call the oncologist, admitting that he didn’t feel experienced or knowledgeable enough with this particular reading or this form of cancer to advise me of its significance or course of action; Multiple Myeloma is well known to be mysterious and heterogeneous in nature (basically causes a hodgepodge or diversity of symptoms that are different for everyone, with a variety of prognoses).  Hmm, i thought, and here i am paying you quite a bit of moolah, but i appreciate the honesty and due diligence.  So, that landed a little heavily, though i tried not to worry (ha ha) but nothing like a doctor expressing concern to cause me to be more than concerned.  The oncologist would not get back to me until 4 days later, what with it being a Thursday afternoon, he is extremely overbooked, then the weekend.  I did get the conversation i wanted however : that Monday afternoon he called and explained that this number was not one to be alarmed about it unless other things were amiss : anemia? (no), M protein detectable? (no), blood calcium elevated? (no), kidneys and liver showing distress? (no), and no pain, no discomfort, etc.  An alarming number would be in the thousands. We’d keep on eye on it, see what the next month’s results would show, etc.  PHEW!  All good, AND i started looking for a new naturopath. It was clear that i needed someone who was more informed and experienced with MMyeloma, and who would do his own research BEFORE calling the client whilst blissfully walking her dog.

 
(that was then, change did happen, be patient, read on)

 
How to wade through the vast array of naturopaths who claim experience with cancer…well, i got lucky.  While sifting through my absurd amount of emails, i came across one that a good friend had sent me months ago, that i admittedly ignored cause it said “check out this naturopath Dr. Dreamhealer”.  Sigh, i thought at the time, i need a doctor not a dream analyst!  But when i actually read the email, it said that this famous naturopath was only taking cancer patients and that i should really check him out.  What did i have to lose in checking him out, so i did, and what fortune!  Dr. Adam McLeod is his name, and he is an oncological naturopath, with degrees in Molecular Biology and Biochemistry.  I wrote him an extensive email outlining my state of health while also explaining what had occurred with the last naturopath, and asked if he was well versed in the complexity of multiple myeloma, does he keep up with current research on MM treatments, both allopathic (conventional) and naturopathic, etc etc. He wrote back, that yes he was quite familiar with MM, has several clients with it, and is keeping up with current findings and treatments on all levels.  So long story short, i’ve had 2 consultations with him, one over the phone and one in person in Vancouver, and i found him to be what i need for now.  (Though he was made famous by hundreds, maybe thousands of people claiming he helped cure them, including musician Ronnie Hawkins who says Dr. McLeod saved him from dying of pancreatic cancer, he is surprisingly unassuming and not pretentious at all).  He gave me a new protocol of supplements (see list below), explaining each of their purposes and actions specific to MM, and encouraged me to work on reducing stress as the number one thing to do to affect disease progression (i sure have my work cut out for me on this one).  No need for chemo at this point, just a watchful eye on the monthly blood work…but, read on.

 
Meanwhile, blood work done in March, a month ago now, revealed news that i did not receive well.  The anniversary of the one year since being diagnosed with cancer (Feb 26th, 2016) hit me hard and unexpectedly, so i was already sulking and tripping over my pouting bottom lip when i got news that the M protein was back to being detectable.  And the FLC was also still climbing, which again, in and of itself is of minimal concern, but coupled with a climbing M protein, is a sure sign of disease progression. BOO, HISS!

 
However, i am lucky in that there is still no sign of this disease affecting my organs or bones, which means it is still at an early stage and non-aggressive.  My oncologist, new naturopath and the hematologist who i also saw recently, offer that going back on chemotherapy (CyBorD, or, “Chemo Light” as i like to call it) is not an unreasonable course of action, especially since it worked before and was well tolerated.  All 3 also explained that there is no guarantee that it will work as well this time, since the protein may have mutated since then, or that i will tolerate it as well as i did last year.

 
Oh, and to finally answer the question about the IV treatments, Dr.McLeod said that that protocol is only helpful if i was symptomatic and not feeling good…so i saved myself a ton of money and time (4 weeks away), and can put that money towards the many treatments, supplements and travel expenses that i am incurring and will have in the near future.  And i bow down to you who have donated : thank you again.

 
Also highly recommended (and very expensive) is to get all my dental work done before going back on chemo, since not only does chemo weaken the teeth and bones, it is overly complicated and very risky to have dental work done when the immune system is down, either from chemo or the myeloma itself.  I’ve had 4 appointments over the last 2 weeks and have 1 more this week = 2 crowns, broken fillings fixed and a deep cleaning later.  sigh.

 
I’m committed to meditating in some form or another every day now (sitting or walking), getting as many energy healing treatments as i can schedule, massage therapy when i can, more walks, rest and hot baths, and reading and watching only comedy again!  Sadly, very sadly, since i have to simplify things and also prepare for probable life on chemotherapy again, I’ve stopped (or should i say taken a pause) teaching Nia, one of my loves, after 5 years almost to the day!  That was another recent and happier anniversary, one that
brings me so much joy to think of; i’m so proud of myself and all the people who came to try something different, fun, and healthy for body, mind and soul.  I dream of the day when someone local will take the leap, do the training and start teaching in Lillooet, so that i can luxuriate in being a student again.  Teaching takes up too much time and energy in preparation, and having to be On.  Meanwhile, i will dance at home when it moves me, and continue to dance through life…but there is nothing like dancing with others to irresistible music!

 
This all being said, i don’t exactly know what else is next, other than wait and see : the M protein as of mid March is still really low, and the rest of me is well, so there is no panic.  Once the dental work is done, i will have another blood test, and see if the M protein has changed for better or worse, see the oncologist on April 19th, and go from there.  I am also waiting to hear back from a Toronto hematologist/oncologist who is one of 2 Canadian Multiple Myeloma experts, with her opinion about what course of action would be best for me and my situation, in the spirit of designing a protocol that is personally suited and not necessarily the standard course recommended for all multiple myeloma patients - how can we paint people with such broad strokes, strokes with serious consequences, if the disease itself is so individual, and we are all individuals?

 
I am planning on going back on “Chemo Light” (CyBorD), IF and only if the M protein has climbed - if it hasn’t, i will wait until it does, since every day, every month without chemo is a blessing and a chance for my body to self heal (supported by supplements, stress reduction, etc), AND for me to live my life as normally as i can.  I will also resume the monthly Pamidronate IV treatment (bone strengthening medication), also recommended by Dr. McLeod.

 
Depending on disease progression, i am also strongly reconsidering the stem cell transplant, remembering the words of another hematologist who is independent of the BC Cancer Association, who i saw last summer: “do it now while you are young and healthy” (so that i can survive it well), and from my former naturopath “take this window of opportunity”, so i am thinking that getting it done sooner than later could be the best course of action.  Who knows? It might very well be true that i will have the best chance of coming through it with flying colours if i do it while i am (otherwise) “healthy”, while i am under the care of Dr. McLeod who has supported and treated many clients
through a transplant, and during the summer months when flu numbers are lowest and traveling between Lillooet and Vancouver is safest (thinking of family and friends coming to visit!).  But i still am perplexed at the thought of making myself seriously ill with this treatment, when i am feeling so well now; it is rather counter intuitive.  Kinda seems like bombing a country, killing innocent bystanders, in the name of peace.  But, let’s not go there now.

 
I reassure myself that the integrated approach, of doing conventional (chemo) treatments while under the care of Dr. McLeod, is the way to go for me; it gets to all parts of me, the nerdy scientist who is so grateful to modern medicine, while also feeding my natural self in more ways than one.  I have to stop caring about what others think of my decisions however, which is an unfortunate spell i and many fall under - what will my herbal allies think of me doing chemo? what will my medical allies think of me following a naturopath?  This is a burden i do not need and which does not serve me.  This is my life, my body, after all, and my consequences.  And, what anyone else thinks is none of my business, phew.

 
There probably is no right (or wrong) answer, just as whatever decision i make will be the right one, right?  There’s a lot to consider.  Lots of ifs and changes, and unknowns.  Time to call upon Flexibility and Strength to get me through this period of major decision making.  And, your love and support, no matter.

 
There’s a lot to be thankful for, of course.   Although i can feel pretty deeply bummed out, i don’t last long in that realm; my spirit is too strong still.  Back to that mantra “It Could Be Worse”, yup, it sure can be way worse.  For one, i could be alone in this, and i sure am not.  I’m lucky and so grateful to have an incredibly loving, supportive and hard working partner/husband, and you my friends and family who care. 

 
I’m also scared shitless, not really of dying, but more so of getting and feeling and maybe even staying sick for the rest of my life, whether that is from the myeloma or the treatments themselves (the list of potential side effects from long term chemotherapy and a stem cell transplant is as long as my arm and frightening).  Scared of being a dependent, of feeling crappy most of the time, of being a sickly no-fun mom and partner.  Scared of the unknown.  And sad…the Why Me? What did i do to deserve this?

 
I rarely stop thinking about this.  It’s always with me.  I have to make friends with it and carry on.

 
Despite the burdens, fear and questions, i  strive to constantly remind myself to be in this present moment, stay with what is, be hopeful, stay in this Don’t Know What’s Next mind = who does?  No one does, not you, not i, so i am not alone in this one bit.  I’ll try to be patient (ha!), await the changes, without bracing for change. Dynamic ease.  Tight but loose.  I’m going to try to find the fun in the instability, the surprise of this disease, of this life really.  I’ll lose my balance, even fall, hopefully not break anything, and get up again, and again, and then, again, until i don’t (no one gets out of this alive!).

 
I’ll stop there, but have to add that I can’t promise timely updates (or short ones!), as you well know by now.  There are too many blood tests, too many
appointments, too many I Don’t Knows.  So if you want to know what’s happening, go ahead and ask.  You might get a reply, you might be redirected to a new blog post, or you might have to wait!

 
whatever happens, I love you!
gillian

 
List of Supplements/medications
pre/post chemo
Valacyclovir - to prevent Shingles, a potential side effect of chemo
Indole-3-Carbinol (I3C) (200 mg 2x/day) to inhibit STAT3
Vit D (5000 iu/day) to support immune system and bone health
Curcumin - Curcummatrix - (2520 mg 3x/day) to reduce inflammation and
support immune system
EGCG (500 mg 2x/day) to inhibit abnormal cell growth
Naltrexone (low dose) to increase NK cell activity and abnormal cell death
Reishi (400 mg 2x/day) to support immune system and inhibit NFKB
Vitamin K2 for bone support
Mistletoe injections to support immune system
~ avoid simple sugars and red meat (“unless someone hands you a
hamburger at a friend’s bbq”, those were Dr. McLeod’s exact words)
~ drink 2 L of water/day
~ meditate and visualize positive things every day to reduce stress
and support immune system

 
during chemo
same as above Except
No EGCG or Curcumin - competes with chemo
Add : PectaSol-C (5 g 3x/day) to support Valcade aka Bortezomib (chemo)

Happy New Year

Hello and Happy New Year!  May it be full of fun- filled adventure, love and good food.


Here's my update:

Oh, how the words of one person can send me into a wee frenzy of paranoia and worry!  Can you relate?  

I had my monthly blood work in early January, and thanks to the modernization of all things, our test results can now be accessed online if you sign up for it, which I did. While on the gorgeous BC coast attending a birth of a close friend (a brilliant, wonderful, expansive experience to say the least for which I am eternally grateful to have been a part of), I made sure to check my results carefully, and was happy to see again, that all was well, if not perfect! Picture of health actually, or so it was in my mind...until my naturopath called me on my cell while walking the dog.  Lo and behold, there was one result that I didn't know about since it wasn't included in the online results...why? who knows...these systems are not perfect.  He was referring to the serum Free Light Chain (FLC) reading. He was concerned about my result, in that it wasn't normal, and looking back, was on an incline. He admitted to not being a Multiple Myeloma expert by any means, and I know there are few and far between in the cancer world, at least in BC.  There are a gazillion intricacies and mysteries to Myeloma (so I keep hearing) = MM is heterogeneous, there are still unexplainable aspects to each individual's situation, and everyone's body reacts differently.  He clearly wanted me to consult with my oncologist to see what he had to say.  I appreciate his due diligence, and honesty, and it's nice to know there is someone out there looking out for me in this kind of detail.

Unfortunately it was to be a few days until I heard back from my oncologist, who kindly called me and was immediately reassuring.  I am happy to say I had the conversation that I was hoping for.  I should have trusted my instincts, and my body, but it's natural to feel concerned when a medical practitioner is also concerned!

Here's the deal:

Yes, the FLC reading is up, but in the 80s, not that high considering he sees high readings in the tens of thousands.  What I appreciate about this oncologist, is his emphasis on looking at the whole picture :

• how i'm feeling = Great, better than ever
• M protein levels = undetectable!
• blood calcium levels = normal
• anemia? = not even close
• kidney and liver function = perfect
• pain level = none

It was summarized in a letter to my naturopath which he just read to me over the phone : 

"there are no significant signs of disease progression." 
 
So I'm putting myself back in the super star realm, and breathing...deeply. 

Then, what of this elevated reading?  No one knows.  I'm to repeat the test soon, as usual, and make an appointment to see him in Kamloops.  Despite his lack of concern, he of course offered chemo, the stem cell transplant, or continue along as is and keep a close eye on things.  Guess which path I am choosing.  (The latter in case it's not clear).

As for the next step, I have made an appointment already to interview another naturopath who is more experienced with MM.  There is one in Vancouver, so who knows, I may end up there afterall to get IV treatments, instead of Fort Langley.  I have a ton of support there, so this might end up being as it should be.  Doesn't it usually anyway?  

Either way, I'll be doing this course of treatment in the near future, but for now, am settling back into home and herb life, making a ton of products and medicines, filling orders, restocking a local store, cleaning house, and looking forward to the spring while enjoying the serenity of winter.

Meanwhile, my donation goal has been reached and then some and I am filled, if not oozing, with Gratitude.  "Thank You" seems inadequate, paltry, not enough to convey my feelings.  Words can't be enough any way I write them, but Thank you from the bottom of my heart and soul will have to do for now.  I also know that following my heart is also a way of thanking you all, for your support, whether it be your healing, loving thoughts, or monetary gifts, or both (and the hand written letters = wow! love them!!).  Please know that I operate by paying it forward too; I love to help my friends and family when I can, it's one of my things...so go ahead and ask for help, I just might be able to!


and on we go, forward!

Thank you again also for your many messages and emails asking me how I am feeling, doing, what's up, what are the numbers, etc.  I know I am being quite pathetic at keeping you up to date, causing concern and wonder.  I hope that you can beat back any stress you might feel if your mind wanders into the "what if?" realm when you don't know what's going on, in any circumstance.  Practicing the Don't Know Mind is always a good thing, hard as it is, and I am no expert, just a student.  There is so much we don't know, and so much we project, fear, and assume.  I can try to be better at keeping in touch.  I know all of your concerns are based in love and caring for me and my family, and for that love, I am truly blessed...as long as your concerns don't also cause you stress and harm.  The repercussions of stress on the body is under researched and under valued, though we are learning that there are real consequences to stress and worry.  Take care of your selves, try to stay in the present, cliche as it is.  Life is full of cliches, so be it.

much love,
gillian


PS: if you want to post a comment here, please go ahead but be forewarned, many people have emailed me to say they've written this long and fabulous comment only to see it disappear!  So, copy it before posting, and paste it in an email if you lose it.  Or, just email, write or call.

A New Course of Action

Hello friends and family or both

This post has been simmering for quite a while, and I could start with apologies, but i hear a broken record is playing somewhere...

I have great news, and there are 2 equally good parts to that!

One is that I am doing really well, my blood work has shown in the last few months either no detectable or slightly detectable but insignificant traces of the disease being active (though important to remember with Multiple Myeloma, it is "for life" they say, treatable but not curable...hmm).  I remain free of symptoms both consciously (no bone pain, no kidney troubles, not anemic) or unconsciously, according to the blood work.

Since I am doing so well, and for other reasons, I have changed my next course of action in this "Dance with Cancer" (since it's apparently with me for life, i prefer a more positive spin compared to the often cited "Fight with" or "War with Cancer").  I have decided to forgo the option of doing the high chemo/stem cell transplant, and instead, adopt a more naturopathic approach for the time being, one that builds and feeds the immune system, rather than completely wiping it out, as is the goal of the high chemo/stem cell transplant.  This is a decision that sits firmly in my gut, resting and grounded, rather than churning and burning.

My blood work since June has shown no significant signs that the cancer or myeloma is active, and again and again, if no one knew from previous tests that I had cancer, my blood work is considered completely normal.  This includes kidney and liver function tests, important organs to follow when taking extreme medications such as chemo and anti-virals which I have to take all through chemo and 4 weeks after to prevent Shingles; plus, myeloma impacts the kidneys.

Why fix what isn't broken? and what kind of a fix is it?

Considering there is serious debate among Multiple Myeloma experts about the need for the high chemo/stem cell transplant when there are less harmful, novel drugs on the market now or coming soon, and when faced with the litany of serious side effects, future possible long term consequences (including loss of taste, smell, sight, other cancers, change in DNA), and the length of time for recovery (1 year if all goes well) + a good chance of the myeloma reappearing within 6 months to 2 years (average is 18 months) AND with my blood work appearing NORMAL, I am choosing the path of least resistance For Sure!  (sorry for all the capitals)  This is a path that feeds, that nourishes, that is non-toxic, where I can empower myself to master my own self care, with no side effects and no changes to my DNA...and one I can sink my heart and teeth into 100%, the path that sings to me and reflects who i am and what i stand for; that's my path, for now. 

However, even with all that blathering, I will still hold onto the stem cell transplant option for the day, IF it comes, when the myeloma decides to actively threaten my well being.  My goal is to be able to say at that point, that I've tried other approaches with all my being.  If i ever do the stem cell transplant, I want and need to be 100% lined up with that path.  I can only do 2 transplants in my lifetime, that's all there is approval for, as much for the reason that the body can't handle more than 2, and for funding reasons.  Before doing a transplant, i would have to do several blood and urine tests, get an ECG done on my heart, have an hour long breathing/lung function test (all in Kamloops), and visit an oncological dentist (in Vancouver).  More thanks that this is all covered by our health care system!  Well, except for the travel expenses and accommodations...

Please know that this was THE most difficult decision I have had to make in my life of 47 years.  I did not make it quickly or lightly, and I lost quite a bit of sleep over it and felt close to developing an ulcer.  To help make the decision, I had a good therapy session and had many discussions with the hematologist over the phone, and even though I was approaching the stem cell transplant option with let's say 85% certainty on a "good" day, the remaining 15% of me was a firm NO, or at least, not now.  The hematologist was very supportive, saying all the way through, this is your decision to make.  So I made it. And, he and his team are there for me if and when need be, so no doors have been locked with the key thrown out!  I remain open minded.

In one of the many readings I've had on the topic of cancer (i've become slightly obsessed with reading about others' experience of cancer, including biographies of Lance Armstrong and Suzanne Somers!!!), a gem caught my eye one day during the Great Decision Making Time, and it was for those who are diagnosed early on, and even for some of those who aren't : Remember that there is time; take it easy; don't freak out!  I took that to mean, to use the military talk so often used, don't use all your heavy artillery at the first sign of attack!  I was diagnosed so early on, with no symptoms, completely by "accident" or universal/divine/UFO intervention, so, I have time, and I want to spend it wisely, and keep the transplant in my savings account. 

In addition to the natural approach, I am still under my oncologist's care and will be getting monthly blood tests to monitor the disease, as well as organ function, immune function, etc.  I saw my oncologist last week, having just completed a 4th cycle of CyBorD (the Chemo Lite as i call it, started in March, taking June - mid September off), and he is also supportive of my decision.  I can do up to 9 cycles of CyBorD, or at least that is what there is funding for.  He asked to see me in 3 months, which I take as a great sign, and if anything comes up in the monthly bloodwork, we can change course as needed.  I am prepared to do more Chemo-Lite if need be; there is some data on the efficacy of combining some of the natural supplements I am taking with one of the chemo drugs in the mix.  (http://mct.aacrjournals.org/content/8/4/959.abstract)

Interesting that when i told my naturopath about my decision, he told me that he was recently in Europe visiting hospitals/cancer care centres and meeting with oncologists who prescribe a combination of chemotherapy and naturopathic therapies combined or in tandem, and I think that is the way to go and wish we had such places in North America...maybe they exist, i will look out for them. Or maybe i need to think about going to Europe for treatment! 

So what is the protocol I chose you ask?

Well, there are 2 phases :

First, from now until at least January, I will be following the Rick Simpson protocol which involves supplements of high CBD/THC extract, along with a protocol designed by my naturopath who only deals with cancer patients, and one that is commonly used in oncological naturopathic clinics as well as intergrated health clinics in Europe. 

Here is my daily supplement list in addition to the medicinal cannabis :

Thyroid replacement
Valcyclovir
Curcumin (4 gr)
Turkey Tail mushroom (3 gr)
Fish Oil (4.5 gr)
Vit D (5000 iu)
K2 (45 mg)
Melatonin (10 mg)
Low dose Naltrexone 

Weekly kidney flush tea with Nettle, Uva Ursi Leaf and Berries, Dandelion Leaf and Root, Juniper Berries, Peppermint and Marshmallow Root.

Green Tea daily 

MCT oil

Bone Broth every morning with turmeric, black pepper, thyme, summer savory

Lots of fresh, mostly veggie juices and good water, which i am so thankful to have an infinite source of, living out here.  

The diet is to be a low glycemic (low to no sugar or carbs), whole foods diet, high in plants and good fats, avoiding processed foods, and eating organically raised meat which is good for myeloma/blood cancers, but not for all cancers.  This is close to how i eat anyway, but sadly will say goodbye to pastas and breads.  Intermittent fasting is also highly recommended, so no calories should be consumed for 14 hrs after dinner.  Not so difficult if one is not having to get up, eat and go to work, which I am currently not doing.  Daily exercise, including a daily fast walk, is also on the list = if anyone wants to come take Gillian for a walk (and the dogs), that would be very helpful!  Turns out i can be very sedentary given the opportunity, and here comes winter...

and then napping daily, which comes easily now...i treasure that time, though finding this all to be a part time job keeping up with it all.

Next, Phase 2 : when the funding is achieved, hopefully by mid Feb of 2017, I will be going to the Integrated Health Clinic in Fort Langley every week day for 4 weeks, to get alternating IV infusions of Vit. C, Alpha Lipoic Acid, and Helixor, an extract of Mistletoe, all commonly used treatments for cancer.  I will clearly need to rent a room in Fort Langley, and I am thankful that this small, historic town, only an hour from Vancouver, is a delightful place to visit for a month = great restaurants, nice walks along the river, and not the big city but close enough for my city friends to come visit?!

Unfortunately but as is reality, in order for me to try the naturopathic approach with all my being, i will need help with the funding.  So, to that end, I am fundraising, since naturopathic treatments are not covered by BC Health Care.  I will need about $5000 for the month in Fort Langley, which will cover all the infusions, rent, food and transportation.  Since i am continuing with expensive but highly and widely recommended supplements, my monthly needs for medicines amount to approximately $500.  Yikes, considering I am not working outside of the home. I am still working on my herb business when i can, so if you'd like to help but could use some of my herbal goodies in return, please visit gilliansherbs.com and see if there's anything you'd like to order. 

Thanks in advance for your help, your support, whether it's just by keeping me in your thoughts, sending me good vibes, praying for me, dancing for me, sending encouraging words, or if you can, sending a few bucks to help my cause.  "Thanks" is not enough to convey how grateful i am to have all of you reading this and being there for me in whatever way you are.

If you're the "get 'er done" kind of person and you would like to donate now, you can send an e-transfer to info@gilliansherbs.com

Cliche as it is, every $20 helps a ton!  thank you thank you thank you

OR, i've just set this You Caring site up pretty quickly :
https://www.youcaring.com/gillian-smith-678641

Here's the photo i used for the You Caring fundraiser sight, of my mom and i on the Alaska cruise (what a trip!) in front of a beautiful glacier in...Glacier Bay.  The following day i walked 5 km (on the boat since it was too stormy to walk the decks according to the captain!) for the Walk for Cancer that is a fundraiser for cancer research institutions, put on by Holland America.  Never done an organized walk before!  I met a soul mate on that walk, a wonderful woman, breast cancer survivor, who i am sure to meet up with again in Vancouver where she lives.

Later that same month of September, I rode my bike approximately 8.5 km on the Terry Fox Run, also a first.  Ya just never know...  

Much love to you all : take care of yourself, and give lots of hugs...
gillian