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

September results

hi again

Yesterday marked 6 months since my first chemo treatment, having been diagnosed on Feb 26th.  What a half year that was, with more adventures on this cancer journey to come.

Yesterday, i received much awaited results from blood work that showed the progression of the myeloma, and right to the point, i am doing pretty well, though not clear of the disease entirely.  This is not surprising, since i was told from the beginning and throughout my research that Multiple Myeloma is here to stay, it is not curable but it is treatable, and with treatment and some luck, i will live a more or less normal, healthy and long life!  That's my goal.  And, who knows, there are new treatments and talk of cures every month, so i am hopeful.

My new normal, amidst home life with gardens and medicine making and horses and dogs and a 12 year old thriving son, includes going to cancer clinics where i am known by name, getting blood work monthly, often weekly and now battling finding unscarred veins, consulting various doctors and healers, and carrying the title of cancer patient (never thought of myself as patient though, ha ha).  I am not a cancer victim.  Fighter, yes.  I think about cancer every day, sometimes just a fleeting thought, other times pondering the deeper question of what is important in life, other other times panicked and fearing the worse, feeling sorry for myself and my loved ones who watch and support me as best they can.  Mostly though, i am ok and well into accepting what is.  It is ok, i am ok, and it could be so much worse! 

In case you don't want to read on and just get the gist, the blood work was pretty good and i am well AND i am doing another round of chemo.  


Into more details : the blood work is slightly complicated, and i actually don't have this month's numbers in front of me (i guess the novelty is wearing thin and i am losing interest in the nitty gritty)..but, basically, we are looking at a few things in my blood work to tell us how my general overall health is, and closely watching 2 disease markers, the M protein (the BADDY protein, 0 is normal), and free light chains (also baddy but there is a normal range).

My overall health is great!  I feel great and have good energy = I am proud to say that i found last Sunday's 8.5 km Terry Fox ride, where i missed a turn and rode up, then down, a big ass hill unnecessarily, so into the zone i was, was totally doable and relatively easy...and fun!  Pretty much right off the couch, or out of the garden, and onto my bike, i did it!  Who knew?  Not i.

Back to the inner details.  The blood work shows normal white and red cell counts, platelets, etc.  One key thing we are watching is my kidneys, since myeloma can cause kidney problems, and gone untreated or unnoticed, myeloma can cause kidney failure. My kidneys are doing very well, no sign of stress.  Awesome.

Also normal and watched very carefully is my blood calcium level, since myeloma does cause bones to break down and leach calcium into the blood (leading to said kidney problems).  Also awesome, since in the beginning, i did show signs of hypercalcemia (too much calcium in the blood).  Not so now.

Big winner news item yesterday was that the baddy M protein level is still UNDETECTABLE!  Major relief there, since we were curious how 3 months of no chemo would affect the M protein.  This does not mean it is gone, it means that the technology as it is today cannot detect it; still, great news and what we are aiming for.  I don't know how one would know when or if it is gone, good question for the docs.

What is not normal still, and cause for slight concern, not anywhere near panic level, is a rise in the Free Light Chains (don't ask me what this means, i just know it's not supposed to be as high as it is, and should also not be increasing = see link below if you're interested).  Not to overshadow the other great and perfect results mentioned above, but still, hmmmm.  It is not as high as it was when first measured in February, but it has climbed since my last test in July.  Boo, hiss.  

Apparently, free light chains react quickly to treatment and/or an advancement in disease, though the rate of increase is unpredictable. So, an increase in free light chains may show up before an increase in the M protein shows up in blood work, hence the cause for concern.

One unfortunate fact yesterday, was that my oncologist was away, and i was seen by a GPO = a General Practitioner trained in oncology...they can't direct treatment or make treatment plans, but they can read and interpret results and write prescriptions, etc.  So, she was unable to tell me if i should undergo another round of chemo to address this rise in Free Light Chains.  At my request, she tried to contact my hematologist in charge of the stem cell transplant phase of treatment, to ask him his advice, but he too was away.  4 hours later, waiting not so patiently at times in the clinic while getting my monthly Pamidronate infusion (which only took an hour), she finally returned saying she had spoken to my hematologist's substitute, and another hematologist on call, and read through my files, and said that there was some risk in leaving the increase in the Free Light Chains unchecked, especially in terms of the success of the stem cell transplant coming up in November.  The plan was always to do 4 cycles of chemo before the transplant, and i had only done 3 cycles before the stem cell collection in June, then declined it in July when my results were so good.  So, not wanting to risk the success of the stem cell transplant, not wanting the myeloma to get a hold with increasing light chains, and not wanting to waste all the success i have had so far, with much difficulty and hemming and hawing, i decided to go through with another round of chemo. It worked well in the spring, right?

Don't mess with the plan, right?

So here i am, day 2, and i felt so good at times today i forgot that i had done that, until i felt a little weird and ever so slightly nauseous, and yet again, cannabis made that tolerable at worse and disappear at best.  I made a ton of pesto today, vacuumed, and had a nap.  I am eating well.  Again, could be worse. I feel a slight headache coming on; must drink more water, and, get off the computer!

We shall see what tomorrow brings.

So, back to Kamloops for 3 more treatments, and to add to that, i will be undergoing a battery of "pre-op" tests in preparation for the stem cell transplant.  Apparently they need a baseline of my health in greater detail : lung function, heart test ("MUGA"), liver tests, etc.  woo hoo...so grateful for social medicine.  

For those of you who want to know more about multiple myeloma and free light chain assays, here is a link :
http://myeloma.org/pdfs/U-Freelite-Eng2011_g2web.pdf 
(gotta love all the happy smiley faces in this booklet!???)

I should be finding out pretty soon about exact dates for the stem cell transplant, and will let you know the details of that when i know them, including what kind of support i will be needing.  I've been advised by the stem cell transplant coordinator in Vancouver to book the Jean Barber Lodge for cancer patients for November 7th, to reserve a room, which is easier to change if booked in.  

 In the meantime, please know that i am doing the best that i can to take care of myself with all the means available to me, from chemo drugs to natural supplements and herbs to crystals and positive thinking (the latter being the hardest).  

I wish you all wellness, and if you don't feel well, then i wish you at the very least courage and inner strength to face whatever obstacles you may be facing or will face in the future.  Hold your loved ones close and be kind to yourself and others!   

find the silver linings and focus on the good stuff my friends,
love,
gillian 

Healthy greetings from Alaska!

Greetings from Alaska!

Yes, you read it right, I am currently on holiday in Alaska, on a cruise with my mom who so generously has taken us on a deluxe cruise through the Inside Passage, past Haida Gwai (top of the bucket list), into rainy Juneau, where I got close to a glacier, saw whales and dolphins, then historic Skagway, train ride into Canader eh, surrounded by mystic mountains and a diversity of plant life, and got lucky panning for gold as the clouds parted.   Now in beautiful Ketchikan enjoying free wifi and a Mexican cocoa.  I should also say that I am so lucky to have 2 of my favourite people with us, Charlie and Melissa - thanks for cruising with us!

I should apologize, profusely to some of you who have contacted me, asking, wondering how I am, how have i been doing.  Sorry about keeping you in the dark, and I only hope that you thought no news is good news.  I hope most of you know by now that I am not a good, consistent blogger! But i do know that i would have liked to have written this update in July, and boyo, how time flies.

To get to the point right away, I am well, really well; feeling normal actually.  I have not had chemo or any other pharmaceutical treatment since early June.  YES!

I will go back a bit.

In June, i had my “clean” stem cells collected, following 12 weeks of weekly chemotherapy started in March, the “chemo-Light” as i have labelled it (Bortezomib/Cyclophosphamide/Dexamethasone).  The stem cell collection process was easier than I had anticipated, and isn’t that the case all so often?  After 5 injections (once a day) of a stem cell proliferator, (special thanks to Dave!), I was successful in giving 15 million stem cells and only needed to give them 5 million, so there! HA!  I am good to go, my cells are frozen and safely stored in some cell bank, with my name on it, somewhere in Vancouver.  Weird, cool and I am grateful for this technology.

In July, I had my monthly blood work, and low and behold, the cancer cells didn’t appear to be active, and so I opted out of going back onto chemo - why fix what is not broken, right?  My oncologist was in full agreement, and I believe that had that blood work been shown to any oncologist without knowing my history (namely the bone marrow biopsy), i would have been told i was healthy and cancer free.  WHAT A RELIEF!  I can’t tell you how happy i was and still am.  How I have enjoyed this summer, regardless of rain, storms, etc…i loved the rain, the clouds, the sun, the intense heat when we did get it, no matter.  I would have loved snow really, though would have quickly panicked on behalf of the basil and tomatoes.  I even got back on a horse, bare back and all.

So, now I am cruising, literally.  I anticipate with some anxiety my upcoming blood work and results which I will read with a doctor at the BC/Kamloops Cancer Agency on September 20th.  We shall see then if all the herbal and natural supplements, crystals, deep breathing and easy living will be successful at keeping the cancer at bay.  But, i must be honest and upfront, Multiple Myeloma is known to be a life long disease, and there is a very good chance it will reappear.  So, it's a waiting game, and since hope is free, I'm loaded.

If it does reappear with some certainty, then, onward to more CBD oil, Turkey Tail mushroom, Turmeric extract, Vit D, Melatonin, lose dose Naltrexone, and yes, most likely more "Chemo-Light” since that all worked like a charm, and facing the decision to have the stem cell transplant which I hope, if it is a go, will happen in early November so I can be back home for Christmas. The transplant involves being in Vancouver for 6 weeks if all goes well, starting with a mega dose of Melphalan, followed by the reintroduction of my healthy stem cells 24-48 hours later, to reboot my immune system, and lots and lots of sleep to recover…but more on that later.

For now, please celebrate with me that I had a summer off of chemo, was able to enjoy feeling completely normal, and live a more or less normal life!  I say more or less, since after a diagnosis of the C word, everything changes; it lingers, haunts and becomes part of one's daily thoughts.

Take care everyone, life is short, cancer or not. ENJOY your self, your loved ones and what life has to offer!

Inquiring minds...

Hello everyone

Inquiring minds want to know! How am I? Have I finished chemo?  What is my oncologist's favourite super hero?

How am I? I don't often know. How are you?  This has always been a puzzling question to me, since I take things too literally all too often.  "How am I" is short for how am I doing.  Doing what, life?  Ok ok, I digress.  Sorry ~ i've always been a "little" difficult..or just little...or just difficult.

The long and short of it, as usual, is I am all of it.  I experience highs and lows and lots of in betweens, and most of the time feeling ok, though also often feeling overwhelmed at the giant list of things to do that lurks on my desk and doesn't seem to shrink at all.  How am I dealing with the chemo is probably what most of you are curious about.  I still look great (according to those who lay eyes on me), and I laugh at all the different ways people react to seeing me, where they place the emphasis on "you look great", or "well, you look good" as if that is more important than anything.  Some have just come out and said, "I'm surprised that you look so good", and I appreciate the honesty, really I do.  Our perception of chemotherapy and cancer is pretty skewed, rightly so since most chemo and cancer patients did look and feel like crap 10 or 20 years ago.  Nowadays, I see others and myself living relatively healthily with cancer and chemo even.  So, I have great colour, my eyes sparkle, my hair is lush and long (am i bragging, me?) (and these are outside observations, not mine), and no i am not losing my hair, not with this treatment (that comes later).  I still have bags under my eyes, wish the chemo would get rid of those, and i had big hopes that my reduction in coffee (even decaf) consumption would help, but no.  Those are simply part of me.  Love the bags.

In and amongst the angst, worry, fear and sadness of having Cancer, I feel pretty good most of the time, considering, and still get lots done, considering, though not nearly as much as I used to, and that sucks.  I even forget (briefly) that I have cancer or that I am taking intense chemotherapeutic drugs into my system weekly now for 12 weeks.  I am definitely getting used to the chemy feeling, slightly altered, slightly off, sometimes.  It all comes and goes, every hour of every day is different really.  I do get sore legs muscles, sometimes, though not as bad as before. I do get tired, I nap deeply almost every day, and have little to no choice in that matter.  Call it self care, I call it succumbing to the need.  The tiredness is from the chemo working its magic, depressing my immune system in the hopes of depressing the cancer cells into oblivion.    But I feel so lucky every week when I have to answer the long list of questions at the cancer clinic: any mouth sores?  any tingling in the extremities?  nausea?  any falls? no no no...just a little tired and if I feel off, which I do on the day(s) following treatment, a little cannabis does the job.  Great for the appetite as well!  But I'll take feeling a little yucky over what I could be experiencing (read on).  I think it has a lot to do with the type of chemo combo I am taking (CyBorD for those in the know), and that I started this journey with what I think of as a healthy, fit and functioning body.  Thank you universe (and tight wet wetsuits) for spraining my collar bone and leading me to an early detection.  Who knows what this would be like if I/they had discovered this myeloma months or years from now after giving it a chance to do some damage.

I don't think of myself as ill.  I am not ill from cancer, and i don't think of myself living with illness; i am living with a diagnosis that requires intense treatment, and the treatment causes side effects, rather than the cancer causing problems. For now, anyway.

I did have one really bad week a couple of weeks ago, and as I lay suffering on the ground outside our outhouse waiting for my body to stop purging while watching ants at work (I really am trying to spare you the gory details), I was wondering how I would write about that experience.  Do people actually want to know how I am all of the time?  The good, the bad and the ugly?  Let me tell you it was ugly, and that's all I will say other than there was much laundering of clothing and showers that day, and Loperamide (aka) Imodium (thank you washing machine, showers, and loperamide).  Reason for this sudden change in reaction?  On treatment day, I'm sitting as usual in the big chair getting my intravenous injection of Bortezomib, and the nurse suddenly discovers that there is fluid leaking and soaking my pants.  The syringe had been cross threaded!  Quick response to mop that up, not wanting it to irritate my skin, and that was all fine, no reaction then, BUT not knowing how much went in and how much didn't, she had to order a whole other FULL dose.  So, I got some extra, no charge!  HA!  No charge my butt!  sorry, had to say it.  THE RESULTING SIDE EFFECTS WERE A TINY AND SHORT VERSION OF HELL! and I never want to experience that again.  Tiny, cause I know it still could have been worse (no real pain at least, "just" a high degree of discomfort), and short, cause we finally read the info that came with "You Now Have Cancer and You Need to Read All This Plus More" package that told us to Stop Diarrhea in its tracks right away, immediately consume Imodium and keep taking that til it stops.  6 hours later....Oops, lesson learned,  read and memorize and keep Imodium in my medicine bag. Not something a cup of raspberry leaf tea could do, not that quickly.  That came next, and lots of fluids.  5 days later, i was feeling "ok" again.   

A week or 2 before that, i was taking amoxicillin to fight a sinus infection (which was painful), the doc saying i could end up in the hospital if i didn't...so my poor guts!  They are much better now.

Then I got a yeast infection.  Ok, details spared.



Well, you wanted to know how I am!  Aren't you glad I am doing well and that you don't have to read about that every month?  me too.

How's my spirit?  I am truckin' along, thanks to keeping busy with gardening, herbs and medicine making, Jamie, Jane my elder client, some wonderful visitors, etc.  I have gotten really bummed out about going to Kamloops every week, and not seeing an end to that anytime soon (read on).  I still find myself sad, mad, confused, and generally feeling sorry for myself that I have this diagnosis, that my cells got confused for some still unknown reason, believing themselves to be superior and cloning themselves to the point of elbowing out other healthy cells in my bone marrow.  Sheesh, the arrogance!  So, I cry sometimes, deeply weep once in a while, and once the tears subside, I eventually go back to deeper breathing, thinking..."oh well".  Really, oh well.  What else is there to say or do?  Except keep going on, taking in the beauty that surrounds me, whether it be the songs of the birds outside, the incredible abundance that i'm blessed with, the awesomness that is my son and my partner (though they are hardly mine, it's just an expression), or our fuzzy, furry, unconditionally loving animal friends...or the chaos of life and all the world's gifts of music, culture, poetry, dance, movement, and random elements.

Yup, this is the real thing called Life.  I know I am not alone, and that helps.  And, sometimes I think, Life is but a game, it's ok, it doesn't really matter, and none of us gets out alive, AND for a second, i ponder the idea that death is but the next great adventure (Byron Katie), and then things don't feel too serious anymore. I am not afraid of dying, I am afraid of sickness and lingering on in life unwell.  But my spirit is lifted by the fact that my body doesn't feel so bad, so i am grateful i am not suffering physically all that much or for very long.  It goes without saying but here i am saying, i would be having a harder time dealing with this if i felt worse. 

Results and What to do Next:

As you may remember, the test results after 4 weeks of treatment were amazing, showing no detectable "baddy" proteins.  Remember also that the technology is not sensitive enough to detect it when it is so low, and so it doesn't necessarily mean that the cancer has been eradicated (multiple myeloma is treatable but not curable so they say).  My doctors assure me the cancer is still active - how they know this?  One doctor, the hematologist, says, he just knows.  hmm.  Well, he's the expert.  Anyways...the only way to really know is to do another bone marrow biopsy, and that will come eventually, I think.

At 8 weeks there was no change, which is good.  Can't get much better than undetectable, right?

The question of the past 3 months has been the necessity of the Stem Cell Transplant - do I have to do it?  I feel like a kid, whining, do i have to?

I have been to see another oncologist for his opinion, and I chose him because he doesn't work for the BC Cancer Agency and therefore has no vested interest nor any pressure to say or prescribe any one thing or treatment (recommended by many including my oncologist).  He is well respected and known for his expertise in blood cancers, and is consulted by the naturopathic oncologist (or the oncological naturopath?) that I also consult with.  He was absolutely clear and adamant that the Stem Cell Transplant is a no brainer, meaning, Yes, I should do it, without a doubt, and the sooner the better.  All the reasons I had in my mind as to why I perhaps shouldn't do it, at least now (I am young, I am not sick with the cancer, it is undetectable), were reasons he listed as reasons why I should do it.  Do it while I am young (i love that 47 is young) and can therefore recover well from it.  Do it especially now or soon when I am not sick with the cancer, since waiting without treatment will inevitably mean that I will succumb to the cancer's ways and then i would be dealing with "swiss cheese bones" (his words), and/or severe anemia, and/or kidney dysfunction, etc, and then everything is different and more complicated with a worse prognosis.  Do it now that it is undetectable to push whatever is left down to complete or long term remission, which can be anywhere from 6 months to 10 years = I am going for the 10+ years myself.   Plus, he and many others say, in the next 5 years, we will see incredible advances in cancer treatment, and myeloma / leukemia treatment especially, so this will in theory put me in a good place to receive those.  

Bring it on I say.  I'm going to do it.

I've talked/emailed in depth with all 3 doctors (2 oncologists and 1 hematologist) requesting to delay the Transplant til November, when our farm season is "done", when I can relax and focus on it, and when it makes sense to our economy and family.  All 3 docs agree that November was not too long, that considering how well I am doing with the CyBorD treatment, it would be fine to do it then.  So it is in the works to schedule me for an early November Transplant = fingers crossed I get my request and that all goes well (no infections or major illness), so i can be home for Christmas to recover and sleep away the winter.  It's supposed to take 3-6 months to recover from the Transplant, so spring 2017 will be a welcome friend when i emerge from my hibernation.  And, yes, i will lose my hair = the least of my worries, and i look forward to some funky hair cuts and hats!

In 2 weeks' time, I will be in Vancouver for a week (June 16 - 23 or 24th), getting subcutaneous injections of a drug called G-CSF (Neupogen).  Nerd alert! This is a colony stimulating factor normally produced in the body to stimulate blood cell production and growth. G-CSF stimulates cell production so much that the stem cells will mobilize to the bloodstream, from the bone marrow, and then can be collected "easily".  I have to have 4 injections, once a day, then the collection is on Day 5 and can take from 6-8 hours. My blood will be drawn out one arm, which goes into a centrifuge not unlike a washing machine, right in front of me which will be very entertaining, then once the stem cells are spun out, my blood will be put back into the other arm.  woo hoo.

First time in almost 20 years that I will miss Summer Solstice in the Yalakom.  That will be strange, it will all be strange.  This is all strange.

The best part of this is that I can't have chemo for at least 14 days prior to collection day, which means I get a break, hopefully starting next Tuesday.  I still have to go to Kamloops on the 7th for my monthly check in with the oncologist...oh well.  

But, the downside to delaying the Transplant is that it is highly recommended to continue doing more chemo (CyBorD, i just like that it sounds like cyborg), in order to keep the cancer at bay, so back I go to Kamloops every week starting June 28th most likely, til mid August when i will take a break before the cruise to Alaska with my mom.  After the cruise, i will have blood work done and a reassessment to see if levels climb without CyBorD for a time = let's hope not and i can take the fall off the chemo as well, or at the most, do 4 more weeks. 

I have asked the cancer clinic to courier the medication to Lillooet so I can have the injection done there, fingers crossed that happens, but it will be a process in getting this done, since it's an unusual request (i think most people don't ask for what they want?).  Luckily I have nurse and doctor allies in the Lillooet Hospital who are helping me with that, and I will hold up the Stress card to justify sending the drug on the road, instead of me.

So to answer the question, am I done?  Nope, not for a while.  

In the meantime, i am living with cancer pretty well, so far, so good.  Wish i didn't have to, but...oh well.

ALL of your kindness, wisdom and love, in whatever shape and form it comes in, is helping me stay afloat.  Please keep it coming, i'm in this for the long haul, and invite you along for the ride to see me and my family through it.  Thank you for the feedback on the blog, and am glad it is serving a purpose and seems to be even a little entertaining to some of you!  I like being useful.

much love,
gillian

PS: i never did get up the guts to ask my fairly square oncologist what his favourite super hero is....argh. I am guessing Captain America. 

Good results and a mixed month

Update, post Cycle 1 (4 weeks of chemo and natural supplements).  

Great news, after this short time, there has been a 72% reduction in the kappa/lambda ratio! I started this journey with a 43.33 reading, and I am aiming for .26-1.65. The results in April are 12.50.

a what who where ratio you say?

well, if you really want to know, Google Free Light Chain ratio in Multiple Myeloma and have fun reading that!  

The important thing to know is that 

"the response is considered a Partial Response when there is more than a 50% decrease in the ratio".

 (mine is 72%).

So, this means I am getting good results already, a cycle, or month, of treatment earlier than anticipated, but/and the myeloma is still active.  4 weeks in for these results, I'm very happy with this and assume it will just continue to improve.  

And, I'm of course aiming for the Complete Response where the ratio has normalized to .26 - 1.65, from 12.50 currently.

OK, here is another result, that is even more exciting to read (but possibly also even more unintelligible). Hang on.

I started with a M-protein, aka paraprotein, the main marker for multiple myeloma, reading of 31.5 g/L, and it should be 0.  The Electrophoresis-Serum Protein (or SPEP) test also done after 4 weeks of treatment, would normally measure the amount of M-protein left in my blood after 4 weeks of treatment, but had this to report:

"there are no paraprotein (aka M-protein) (aka BADDY protein) bands visible at this time".

A further test called Immunofixation Electrophoresis (IFE) which is more sensitive, 

"reveals a very small monoclonal IgA kappa band that was not clearly visible on SPEP.

Here's the good part:

"It is too small to measure".

YES! Happy dance!

So, that's the science. 

HOW AM I DOING?

So my body and mind and spirit...all have been on a roller coaster of sorts, and yet I still hold it true that it could be worse, way worse.

Some days I still feel "normal", some days I am down and blue, mostly stemming from low energy and a general feeling of "ick"...and feeling isolated out here, but I chose this place (not enjoying the distance from town where many friends are, or the stupidly rough roads to get here).

But, no major nausea, mouth sores, nerve pain, etc.  I had a rough ride through a cold that went through the house, I was the 4th to get it (we have a workawayer staying with us, poor guy got really sick).  I had an aching body, could have sworn I had a fever, but kept testing my temp and it was normal or just below.  Apparently it's an emergency if I read 38C and up, straight to emerg I go waving a pink piece of paper that says put this person at the front of the line, no waiting...though in Lillooet, there is often no lineup. 

People say I look good, hard to know if they mean, you look good...considering.  who cares.  I feel pretty healthy overall, considering what i am taking.  still sucks though.

The worst part of this journey so far, besides the passing aches and feeling blah some days/hours, is the traveling to and from home to town for blood work, phone calls, appointments of various sorts, and to Kamloops weekly.  Seriously, this cancer is a pain in the ass (not literally, thank gods). 

Again, thanks to Team Gillian for the weekly drives ~ this would be way worse without you, and it's even fun that day, and a beautiful time of year to travel the roads to Kamloops (which also offers divine decaf almond lattes and fancy foods and shopping therapy!). Major Karma points.

The staff at the Cancer Clinic at RIH are incredible, they are kind, funny, compassionate, optimistic, professional and competent people.  Again, this would be way worse with crabby nurses! These nurses are a different kind of breed if i can say so.  It takes a certain person to do that work day in and out, but my nurse today said it was a wonderful place to work, and it shows; they are all smiles, interesting conversation, inspiring stories, and laughter!  There are nice volunteers offering pillows, blankets, tea, and things that I am not eating, but still nice just the same.

I also have to shout out to Dana who generously and lovingly gives me body work treatments on her precious time away from her and husband Craig's newly opened (and fabulous even though I am not eating bread) Bakery in town!  (UGH the will power to deny myself that...well, i'll eat a little sourdough with butter, once in a while, what the hell).  Our sessions have provided me with a different insight into what my body is going through, how hard and well it is functioning to heal, and how energy work, and our talks, are both adding a whole other layer of understanding, knowing of, and love for my body in all its states and stages.  I always come away feeling lighter and less toxic, in more ways than one. 

WHAT'S NEXT?

Since receiving and understanding the results from the blood tests after the first month of treatment, I am more determined than ever to request of my doctors to design a personalized treatment for me, and not automatically prescribe the standard treatment for anyone with myeloma, most of them being more advanced in their disease, and/or having a poor prognosis.  I want to watch my blood work, which will be done monthly, and if my readings continue to improve, and there is no reason why they shouldn't, then I will want to question the necessity of the Stem Cell Transplant, for now, until the blood work shows otherwise.  It is "major artillery"....oh the power of war analogy.  It is serious stuff with serious side effects including possible organ damage.  I want to know that it is scientifically or medically necessary before consenting.  

For now, I have asked for a delay until November.  That gives me lots of time to watch the blood work, do more research, and decide.

I have the blessing of the hematologist, a very kind and smart man, to take my time, do research, think about and decide myself what's best for me.  

I am going for a second opinion from an oncologist who used to work for the BC Cancer Agency, retired, and has come out of retirement to do a private practice independent of the Agency and its rules and protocols.  I don't have a problem with my current acting oncologist, I just want an out-of-Agency opinion, since he himself said all doctors working for the Agency will give me the same protocol and shpeal; it's what they have funding for and have been hired to do.
 
My questions for all the doctors include:

- what are the rates of success vs chances of organ damage or permanent side effects

- if the kappa/lambda ratio reads normal after x amount of cycles (I was originally scheduled to do 3 cycles), would they recommend doing the Stem Cell Transplant anyway?   

- if so, what do they expect to be able to measure to see success post treatment?

- if so, what would the Melphalan be targeting if my M-protein level is too small to measure just after 4 weeks of treatment?

- are there other less toxic treatments available now or in the near future ? (i keep hearing of some that are cutting edge, less toxic, and possibly available within the next 5 years)? can i wait (or what would be the possible consequences of waiting)

- who is their favourite super hero?  (r u still reading this????!!!)

I want to be smart about this, and so have said that I am willing to undergo the stem cell harvest post 3 cycles of chemo, in case I do decide to do it.  My very own stem cells, the baby or pre-cells, undetermined cells, will be frozen and stored, and are good for 7 years. This should happen sometime in June, not to miss Jamie's 12 birthday on the 15th, and a camping trip on a weekend before or after, but hopefully the scheduling will work out.  I think I need to be in Vancouver for 5 or so days for the procedure.

And, what's next is sleep, getting up tomorrow to a new day, hope for a better than bad day, walk the dog and myself, and give some attention to my herbal business by making some herbal medicines, fill some orders, ha ha...one can be hopeful.  Taxes are on the list too, but the side effects of that work are also frightening = nausea, tension, intense need for quiet and space, headaches, general crankiness, and having to cough up CPP$$ .

Though, the result of doing one's taxes is relief in the end, and a GST refund, so must...do...taxes...even...if...i...have...cancer.  too bad!

sigh, life goes on.

I really ought to get back to dancing.  I have returned to working with Jane, my elder client who has moved to town, very part time on my good day(s), and loving it.

The gardens and plant life in general around here are looking so beautiful and lush, abundance abounds.  The horses are glowing with their spring coats, the cat is ridiculously fluffy and our dog would love more attention but is happy.  

Jamie, despite an ongoing cold, is well and still making me laugh, and Jonathan Swamp has kicked the cold, is working hard at hops and other things like fences, water and power system, potato planting, cooking which he enjoys, and dealing with a plethora of details and projects on the horizon.

This is a very different year, but, at the risk of annoying repetition,  could be way worse.
 
Much, much love, and thank you to all who have responded in any small or big way, quiet or aloud, and/or sent prayers, hopeful thoughts and gifts (you know who you are!) = it's all welcome and appreciated beyond words.  Please keep it coming, this could be a long journey, who knows in the grand scheme of things, might also just be a bump along a swerve in the road called My Life.

I hope you never have to go through this or any serious health concern, but if you do, I'll do my best to help you, I promise.

in the meantime, enjoy your life as much as possible, cliche or not.  

gillian and her too small to measure M-proteins on the way out