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

 

Could be worse.

I hope this finds you all well.  I want to respond to every email, text, and Facebook message individually, but I really can't seem to get to them all, and I end up feeling badly, which I want to avoid and certain you don't have that in mind for me either.  Plus I would love to make sure you each individually know in detail how much I appreciate your kind thoughts, wise words, encouragement, huge love and support, but alas, as well as avoiding feeling badly, I also want to avoid sitting at the computer longer than I already do!

....so here goes, the Mass Correspondence.   This writing also sorta kinda doubles as the journaling I wanted to do, but hmm, not doing.

and triples as information to those researching Multiple Myeloma online and wanting to read about others' experience; i can't tell you how many blogs there are on this type of cancer alone.  Apparently it's a fairly common form of blood cancer.  Who knew.

I was diagnosed with Stage 1 Multiple Myeloma 6 weeks ago and started treatment 4 weeks ago.  I still can't believe that I have this, though I am trying not to own it, definitely avoiding saying "my cancer" = be careful with words, it's not your arthritis, your insomnia, your disease or condition.  Make that condition know it's an invader and not welcome in your body, Your body, You are / I am not its willing host.

HOW AM I DOING?

I know your thoughts involve good 'ole curiosity, stemming from love and concern, so I will start with the most popular questions so far : how is it going/how am i doing? and what are you doing/taking?

Hard to say "how" i am, or rather, it depends on the time of day and what day!  In "summary", i am, or rather, I feel and think all of it : optimistic, scared, positive, bummed out, hopeful, worried, angry, accepting, confused, empowered, physically fine and then not; i feel sorry for myself then i put my big girl shoes back on, but they're a little loose, so I have to fight to keep them on sometimes.  I am sure we all do.

One thing I don't feel is helpless.

Basically, I am doing pretty well overall, all things considered, which includes feeling better than expected or feared.  The oncologist and nurses did say that the cocktail that i take once a week is tolerable by most, but then they have to also add on the incredible list of possible side effects, from nausea to neuropathy (pain, tingling, numbness in fingers, toes, etc) to who knows what, shingles, pain, mouth sores, constipation, diarrhea, insomnia, etc.  Day 1 (Tuesday), when i get the chemo subcutaneous injection in my belly fat of Bortezomid, after swallowing 20 prescription pills and a dozen natural supplements, goes pretty well.  The Dexamethasone really works at preventing nausea and is also used to fight cancer cells (or how I like to visualize this course of action: gently but assertively request and insist that the confused cancerous cells kindly leave my body with haste and no fuss, please, and thank you!).  The Dex does however cause hyper-ness and is quite the ride, and being sensitive to caffeine, well, you can imagine...I'm up as predicted til usually 4 am! sometimes cleaning, often online, or reading, colouring, petting the cat or dog, then laying in bed desperate for my eyes to close, my body exhausted yet sickingly stimulated = woo hoo - not always fun but could be way worse.  Tonight as i write this, i am more tired than usual, maybe i'll sleep before 4.  Thankfully this is only on Tuesdays.

Day 2 (Wed), is the come down, since Dexamethasone is a powerful steroid, as my nurse today said : Dex tells all your natural steroids to take a hike, then "forgets" to remind them to come back when the Dex wears off, so there's a gap where natural levels of steroids we/i normally produce are low for a day or 2 or 3...so I am tired, lethargic, slightly nauseous (though medicinal Cannabis gives instant relief to the nausea hands down to the pharmaceutical anti-nauseant) so, that day is really not fun, but could be way worse!  Wednesdays have been my worse days so far, as the pattern is showing now that I have just finished 4 weeks (1 cycle).  yay me, 1/3 of the way through this round (IF all goes well = we shall see).

Day 3 (Thurs) I am mostly tired, sometimes achy and woozy, Friday is better, usually much better (first week was awful but that went away)...and then onward and upward til Tuesday night.

so, it could be way worse.  but this does suck.  i won't lie, i would rather have my old life back, but open to this being the way it is, and could be the best thing that has ever happened to me...hmm, there are moments.  i also strongly believe that this course of action is the best approach available to me for putting this cancer into deep remission.  belief is priceless and if it's a positive belief, it comes with perks, and if i am thinking negatively, well, there are side effects to that too.  so i'm most of the time choosing to be positive.  NOT always succeeding.  c'est la vie.

it could also get worse i can imagine from cumulative effects...we shall see.  then there's the big scary Stem Cell Transplant therapy that comes highly recommended, even by the naturopath.  It seems to be The treatment to actually succeed in putting the cancer into deepest remission, possibly for 10 years or more if i'm lucky.  Who knows how this will be, the description from the hematologist was akin to a horror movie, no sugar coating by him.  So, I am really trying to get into the Don't Know Mind, but the fear is intense. Who knows, maybe i'll be one of the lucky ones and sail through it easier than feared. 

On my good days, I feel pretty good, practically "normal", almost forgetting the diagnosis.  I attribute this to the good health I had pre-chemo/diagnosis, and to my diet and the supplements.  It's really important for people to realize that I am not sick from the cancer, that is to say, I had no obvious signs of the disease, which include bone weakness and pain, fractures, kidney problems, anemia.  Lucky that I sprained my collar bone in January which resulted in an x-ray that showed a lesion in my humerus (upper arm bone) that is indicative of Multiple Myeloma, and is unrelated to the sprain.  That led to blood and urine tests, and a bone marrow biopsy confirmed the presence of malignant cancer cells in the plasma.

Now and again, I go into either slight shock or complete despair at the thought : I have cancer, really, me?  I am doing chemo, seriously?  I don't know the outcome; the experts call this disease heterogeneous, or "diverse in character and outcomes".  My antidote to the fear and anxiety is Jonathan/Swamp, the love of my life, who has been my rock and I feel so fortunate, lucky, blessed, grateful, whatever, that he is in my life and is able to be so present with me and my new needs and way of being!  holy crow.  And Jamie, my other love, is also being so great, and making me laugh, a lot!  I have no idea how it is for them, but seems like they are both dealing with this as well as could be, so far, so good (but feel free to check in with them).  It helps that I am not appearing to be too sick, i still have my hair and look ok and am still doing things, in between naps.  I'm a tad more grumpy at times, to be expected.  Sorry guys.

I also have a great support network, so necessary and needed in these times, especially living where I do, which is still where i want to be even though it is isolating.  It offers serenity and peace, the best water and fresh, clean, quiet air to a very chaotic, confusing, heavy time in my life.  Thank you Buck Creek and Vast Mountain.  Thank you friends and family who email, send Facebook messages, texts (that i only get once in town but that's nice too) = keep them coming even if i don't answer you!  Each one means so much to me, and it helps.  Thank you Team Gillian for taking time out of your busy lives to drive me to Kamloops weekly ~ rare and precious visiting time on a beauty-filled drive is one of the silver linings.  The incredible showing up of Love for me and my family is overwhelming and really THE silver lining.  

MORE ABOUT WHAT I AM DOING/TAKING:

The treatment I am doing now, is what I am calling the Chemo Lite (or Light!) therapy.  Along with my loving support group, I also have a great medical team, which I am President of (self-elected, i get to do that).  I am working with a well known and respected naturopathic oncologist, Dr. Parmar, in Fort Langley, so far all by phone and email, who I really like and feel able to work well with him and his advice.  What a relief it was to hear that he thought my decision to do this round of chemo was the best one I could make, one he would make if ever in my shoes.  He even said, "I love cyclophosphamides, they work!" ~ that's the other chemo drug i take along with Dex and the Bort)...along with an assortment of natural supplements : large doses of Curcumin and concentrated Coriolus versicolor (Turkey Tail mushroom); Vit D and K2, Fish oil, Selenium, Melatonin (3 mg), plus Low Dose Naltrexone (LDN) both at night, and soon, once I get some instruction from one of my nurse friends, subcutaneous injections of homeopathic Mistletoe 1-2 times a week.  I think that's the complete list... I eat a low glycemic (read no to low sugar except for fruit), whole foods diet avoiding dairy (mostly!) and flours/refined foods, except for coconut flour.  Thanks to donations from friends, I am also able to include Bone Broth on a daily basis as well as fermented foods in my diet, sauerkraut, kombucha, Kim Chi.  I drink more water than ever (again, thank you mountain waters!), and herbal teas - ginger, mint, chamomile mostly for now, sometimes oats, skullcap, and red raspberry, and when i get around to it, Chaga.  And CBD oil too.  Lots of that.

and i carry crystals and wear power-filled amulets.

and i receive energy healing from afar, and in person on a regular basis.

So, along with the chemo, the pills, the drops, I accept all positive thoughts, prayers, and vibrations!  and your list of favourite comedies too, we're on a comedy diet. 

Sadly, I had to stop taking care of my elder client who lived down the road until last week. We've worked together going on 6 years and have grown close.  She had to move to town; my diagnosis was the straw, her care needs were increasing at the same time as her care team was waning.  I also stopped teaching Nia, saddest of all changes really...i have to still dance though, but not finding the groove yet.  I just hope this is temporary, that this will be a year in my life then onward.  But for now, i have a full time job taking care of myself, and writing this unending post.

FUTURE TREATMENTS:

As for the next step : this year sometime, i will probably go ahead and agree to the Stem Cell Transplant (SCT) , once i wrap my head around that fear and beat it down to a dull roar.  It involves a massive dose of Melphalan, followed by an infusion of my healthy, previously withdrawn, frozen then thawed stem cells, allowing my immune system to recover from the chemo essentially destroying it (ok, maybe that's hyperbole).  Could be worse?  yes. There will be hair loss (the least of my concerns believe me), vomiting, mouth sores, anemia, and significant chances of getting secondary infections due to low white and red blood cell counts and platelet counts.  sigh.

The bummer on top of that bummer is that i will have to be in Vancouver in a lodge for out of town cancer patients, near VGH for 6 weeks - ok, here is where it could be worse, i could be in another country that does not offer social medicine, or have such an enormous amount of funding and support for cancer care.  I am so grateful to be in this country right now.  (glad Harper lost, or else i might have moved to Iceland, do they have socialized medicine there?)

I will be an out patient going to the Cancer Clinic Stem Cell Transplant unit at VGH 2-3 days a week for check ups, blood transfusions, and probably antibiotics by IV.  35% of STC patients end up in the hospital as in patients with some kind of infection or another.  They found though that people do better not staying in the hospital for 6 weeks, go figure.  Cheaper on the system too; there is a fee for the lodge, but it includes 3 healthy meals a day plus snacks and tea time, and fresh linens daily and even a helper to make the bed if need be! see, could be worse.  Hope the food is better than hospital food. 

Again, lucky for me, I have some wonderful friends in Vancouver to help see me through that phase.  Anyone who visits however, must be uber healthy, no runny noses!  

After 6 weeks, if all goes as planned and hoped for, I return home to recover, which takes anywhere between 3 and 6 months according to the hematologist.  

Could be worse is my mantra, because it's true.  Not to downplay what is, but it sucks enough to have this diagnosis, the big, bad C word, which is so loaded with images of living like a zombie for years leading to certain death...maybe 20 years ago, but who knows now.  I wager more people are surviving, beating, living with cancer than die from it.  We're all going to die from something, that's one of Life's Guarantees, or is it the only one.  But I want to live a long life.  That desire and hope is key to getting through this.  I hope that i make it into my senior years and die peacefully in my sleep, or sitting on a porch swing on a summer afternoon, having watched Jamie mature and become a man, maybe a husband, or partner, maybe a dad, maybe the inventor he wants to be, who knows. 

It's all so exciting really.

take care of your self, and each other,

much love, 

gillian