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)