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!