Saturday, March 5, 2016

I am a "Special Snowflake"

And no, I am not referring to my prematurely grey hair, because of which Claire calls me "Snowball." 

Yesterday I had the pleasure of meeting a new medical professional I have chosen to add to my team: a Naturopathic Doctor in Collingwood referred by one of my CCAC Nursing friends (CCAC says I'm a lifer, they will visit me every month on an on-going basis).  I adore the ND I have seen in the past, but I have chosen to go with this route as I need a specialist in post-cancer treatment care, specifically one who understands the details of immunotherapy and cancer side-effects.  Plus I travel in the Collingwood-Barrie-Toronto direction far more frequently than Owen Sound. 

This lady obviously does know the ins-and-outs of the beast called immunotherapy (for me, it was ipilimumab) - wow what a conversation in the place of one hour!  I am a reasonably informed patient, but I learned stuff yesterday that has already helped me to feel better and understand a bit more of what is happening in my foreign-feeling body.  

After a thorough explanation of my family physician's and medical oncologist's and endocrinologist's words and recommendations, I also summarized my 20-year experience with natural/alternative remedies/treatments and my preference toward using them in combination with a healthy diet of vegetables and "bird seed."  I was hoping to give her a high-level overview of my knowledge and personality so that she would know we don't have to start from scratch, ie. I already know what it is to be a vegetarian, to take vitamin supplements, and to be connected to my mind-body needs.  

I didn't want to spend any of my hour reviewing why I need to take calcium supplements; I want to cut to the chase: I am desperately trying to avoid further use of prednisone, imodium, and anything to do with the word colonoscopy.  

We reviewed all of the things my body, my family, and I have been through in the last two years; please bear with me while I write a quick review, in order, from April 2014 to now:
- diagnosed with stage 3b nodular metastatic melanoma with a relatively high rate of mitoses (spread)
- surgery to remove 13 lymph nodes (4 of which were positive for cancer) in my hip/groin as well as a second surgery to take a bigger hunk out of my original mole (tumour) site to get clear margins, this involved eight weeks strict bedrest, a round of antibiotics and a nerve-repair drug called Gabapentin, a month of recording the contents of daily drainage bottles attached to the interior of my incisions, and a mountain of stress and fear over what was to become of me 
- diagnosis of lymphedema in my right leg
- a 68-week course of 8 treatments of a potent immunotherapy on clinical trial for stage 3 melanoma, ipilimumab (affectionately known in my family as pacmen)
- a diagnosis of papillary thyroid cancer, thankfully not a melanoma, it was a separate, second primary cancer
- onset of side-effects from ipi treatments 3 weeks apart ie. fatigue, chemo brain, tummy trouble
- surgery to remove thyroid gland, tumour on thyroid gland, 2 parathyroid, and 37 lymph nodes (10 of which were positive for cancer)
- staph infection in my thyroidectomy incision, antibiotics, drainage bottle
- lymphedema in my neck and shoulder
- the weight gain really began
- I-131 radioactive iodine treatment to zap any remaining thyroid cancer cells, the result of which shows an intermediate risk of recurrence due to remaining level of irradiated thyroid cells showing on nuclear medicine scan
- CT scans every 3 months, ongoing, with toxic contrast dye injections every time
- a course of Prednisone to try to alleviate the tummy trouble which my oncologist feels should be on its way to disappearing by now.  Of course I would end up in the 20% of patients that end up with high-grade diarrhea from this trial.  I have before mentioned I am "lucky" in this regard.

Apologies to those of you who know my story already, I needed to summarize for new readers and for myself.  
Writing this list this morning has created simultaneously the feelings of stress and tension for all the crap I have been through, but also a feeling of accomplishment for surviving all the crap I have been through (to date).  This is my journey, and though some days it feels like it's never going to EFF-ing end, I still feel motivated to try to improve it: the journey, and myself, inside and out.  

Back to the ND and the Special Snowflake stuff... 

We discussed in detail the issues around my thyroid, ahem, or lack thereof.  Upon thyroidectomy, every patient has to take a daily thyroid hormone replacement in the form of a little pill, to be taken every morning with a full glass of water, one hour prior to coffee or any other food, beverage, or supplement.  

My dose is the highest they prescribe, I knew that.  But until yesterday I didn't know why.  ND explained that this high dose while it may be too much for my body, it is necessary to keep my remaining thyroid cell stuff suppressed, in order to help avoid thyroid cancer recurrence.  Wow okay I didn't realise that before.  I think it is true what they say, in a doctor's office you hear only 50% of what they say (especially in an oncologists office!) - my family physician has patiently explained this stuff to me before but I still didn't quite get it.  

Having said that, the high dose of thyroid hormone causes my body a bit of confusion.  It actually makes my body HYPERthyroid, which means faster metabolism, spurts of energy/hyperactivity, mood swings, insomnia, fatigue, muscle weakness, and guess what - diarrhea.  So because I have no thyroid I am not automatically HYPOthyroid?  

No... not exactly.  My body is roller-coastering between hyperthyroid and hypothyroid because the excess hormone replacement is being used by my body in a thing called "Reverse T3."  
The ND explained it well but my chemo brain is currently restricting my explanation of the details.  She told me to look it up and I did, here are a couple of links that explain things in line with what ND said:  and

The trick is, there is nothing we can do to treat my symptoms of hyper/hypo/reverseT3 stuff.  It is more important for me to live with these symptoms than to have the thyroid cancer come back.  
That's putting it simply but it is the end of that conversation.  I think family doctor will be happy to hear that because she (and endocrinologist!) doesn't want anyone messing with my thyroid levels/meds.  Bottom line Natalie: You are a SPECIAL SNOWFLAKE.  Suck it up Snowflake.  :-)

About the post-immunotherapy colitis symptoms however, I have news.  We are going to try a three week course of high dose of probiotics.  The good ones, the friendly bacteria.  

This is not the eat-two-yogurts-a-day challenge, this is take-a-minimum-of-50-billion-live-critters-every-night at bedtime, no matter what.  Swallow 4 capsules of nature's bounty.  Sounds good to me, I already had an inkling that these may help, in fact, this is the bottle I always keep on hand and have taken sporadically but had on my list of question for ND as to how to take them properly?  I know they are sensitive little bugs and taking them incorrectly can make them redundant:

She said we have a coin-toss chance of success with this, but it is worth a try.  If that doesn't work, we will investigate food intolerances.  Yikes, I hope the probiotics work, as I consume pretty much only the stuff I like! so... if I have food (or wine) intolerances that are causing my flare-ups then I will be a cranky camper.  

Chances are that all of the treatments/meds/antibiotics I have had have caused a Dysbiosis (also called dysbacteriosis) - a term for a microbial imbalance on or inside the body. Dysbiosis is most commonly reported as a condition in the digestive tract.  This would be understandable due to all the stuff on that list I wrote above.  

The other factor is that in my 20's I was diagnosed with Irritable Bowel Syndrome, and from that I have learned a lot about my food choices and intolerances (to gluten, for example, though I eat gluten anyway silly me).  For the most part those settled down over the years, but now with the intense immunotherapy treatment my digestive system has quite likely been provoked into reacting again to food intolerances OR it has developed entirely new intolerances.  

Should the probiotics not work, I will write about that more as we explore the options.  This post is long enough!  
Geesh... if you're still reading, thank you.   

PS - Don't worry... I won't let all of this "Special Snowflake" stuff go to my head!  My family keeps me firmly grounded with commentary such as Cassandra's observation yesterday that "Mom - EVERY snowflake is special, because they are all unique!"  *sigh* Thanks Cass.  ;-)

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