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