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
