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.
