Once a Nosy Patient, Always a Nosy Patient (Advocate)

Note from a reader: Enough gallivanting around Natalie, get back to work!  

OK, back to work I go - I have cancer to write about, experience to share, fellow patients and warriors to help through their crappy time the way others helped me through mine (and still do). 

Earlier this year I wrote about my most recent surgery (not cancer-related), and the results of that - not anemic anymore - good stuff! But there is more... I have learned a lot in the past couple of years about my health and options. Thanks to a move in provinces, I basically qualified for a whole new round of Physician referrals and perspectives, which is pretty interesting to experience. I was very happy with my care before, but now I have some new tools to add to my repertoire.

First off, I am fortunate to have another great family doctor (GP), who has been fantastic acting as my advocate and connecting me with specialists I may not have discovered otherwise. 

Right out of the gate he got me referred to the BC Cancer Agency (the equivalent of the formerly named Cancer Care Ontario, which governs all cancer care in the province - in the western provinces and some of the east, they actually refer to it as "Cancer Agency," which I had learned in my work with SYSF, but hadn't encountered personally, in Ontario). Every province has its own health care budget so if you move you get a new health card and you fall into that province's budget, and you no longer get services in the other province. There are times when patients can qualify for out-of-province treatment/care, but I'll save that topic for another day.

BC Cancer (BCCA) has a beautiful Cancer Centre here in Prince George, and a couple of CT scanners in the adjacent hospital UHNBC, as well as MRI (though for PET we have to go to Vancouver). My first experience with the centre here was interesting, as, being new to BC Cancer, I was to follow the "new patient intake" pathway. My intake interview was conducted by a nurse over the phone (thanks covid), and I was struck by the complete line of questioning as it was almost exactly what I had experienced seven years prior, when I was first diagnosed with melanoma. 

It was rather surreal, and to the surprise of the nurse, so many of my answers were detailed and knowledgeable. In 2014, being brand new on the scene I had stumbled with many of the questions, not understanding what the staff were saying to me, not knowing my family/cancer history, being in shock in general as a brand new cancer patient. They were very sensitive and gentle with the questioning, but to be asked again this far down the line if I had a Will in place and a Personal Care representative and my affairs in order was a stark reminder of the deadly disease I am dealing with.

This time around I heard the questions and knew what to say and what to expect, from my years of personal research as well as work in the space, but I couldn't help being taken back to my first cancer centre experience, sitting in the waiting room holding that tell-tale newly-diagnosed envelope. It was emotionally difficult to answer some of the interview, as I had entered the process knowing I was new to this centre, but not comprehending that they wouldn't just read my file, they would treat me as an entirely new patient. 

Overall it was interesting to have that experience and it reminded me of the compassion all newly diagnosed patients require.

Image source: All.Can Canada

Intake complete, I was referred to the Medical Oncologist who travels here to cover melanoma patient care, among other indications. My first impression - aside from knowing no one could compare to The Boss - was that I would have to advocate for myself right out of the gate. Because I was past five years with no evidence of disease since melanoma diagnosis, in this Oncologist's opinion, I no longer needed to be followed. Well I know otherwise! 

A metastatic melanoma diagnosis is forever. It is a sneaky disease too, in which one might not experience symptoms of recurrence for months, and if not for being followed, one would not find out they have recurred until it is potentially too late to treat. 

A patient has the right to choose their follow schedule based on guidance from their medical team, but also on how they are feeling and doing, and any symptoms they may or may not be experiencing. I am clearly aware that I can request a CT scan any time I wish. I want one annually even in good health, so annually one I will get.

Simultaneously I received a referral to a Dermatologist for a full skin exam, which I should also have every year, but hadn't in I won't say how long. That one I'm not as hot to pursue, as I was educated from my first Derm years ago, my metastatic melanoma would not cause new moles or lesions. I may get new ones, but they would be unrelated to the first. While of course I do my monthly skin self-exams, it's the internal melanoma spread to lymph nodes and beyond I need the cancer centre's help watching out for. 

There are not official guidelines in place across Canada for metastatic melanoma and non-melanoma skin cancers at this time. There are some guidelines in a few provinces, but not a complete set, so this explains why patients in some centres will receive completely different information about their disease than patients in other areas. 

It is a disparity that continues, and that should be addressed so that patients will no longer fall through cracks in the system, as I could for example, if I wasn't being scanned. Or as melanoma friends I have met on many occasion could, when they receive outdated treatment information or options. It is discouraging that we still see many of the same things happening in skin cancer care now as Mike experienced when he was first (mis-)diagnosed in 2007. But I digress...

Got a clear bill of skin health from the visiting Dermatologist, and that's great. Since then though, I'm happy to report that PG has gotten two new Dermatologists here full time, so that will help to address the Derm shortage for everyone in the Northern Health region of BC. I go see my new Derm for the first time in January so stay tuned for updates on that. You can be sure I'll be doing my usual dig-for-info-as-informed-patient at that one!

Alongside all this melanoma-maintenance, my GP referred me to an Endocrinologist. You may know from my thyroid cancer battle that I had dabbled in Endocrinology lessons in 2015-2016 at the same time as melanoma, and that involved neck surgery and radioactive iodine treatment. Completely different experience from skin cancer, but again a whole bunch of information a patient needs to know.

My new Endocrinologist here in PG was extremely compassionate and thorough, and once more it was like I was a new patient all over again. He requested all of my surgery and pathology reports from Sunnybrook, and explained things to me in a way I had not heard before. We did bloodwork several times to get full stats on my TSH/T3/T4/Thyroxine/Thyroglobulin, and he ordered an ultrasound on my neck/throat to get a baseline in case we needed it for future. 

It hadn't occurred to me to get an ultrasound sooner, as since my thyroidectomy and follow-ups in Toronto I was on a maintenance-dose of daily thyroid hormone supplement to keep my system running and keep any potential thyroid cancer cells away. Plus with the head to toe CT scans for melanoma I figured I was covered for metastasis-checks. 

Turns out an ultrasound every few years is a good idea as well, to check for any lumps or bumps that may not show up on a CT scan. In any case, ultrasound was clear, bloodwork was good, he adjusted my dose gradually down a little bit, and I'm rolling with that for the foreseeable future, consistent bloodwork pending.

So that's my informal cancer lesson for the day, work done - check and check! Though I do continue to look for ways to help myself and others in this disease space, so consider this an open invitation: if you have any questions you need help answering, about cancer, but especially skin cancer or thyroid cancer, I may be able to steer you toward the right source of information. I hang out with lots of health care providers and patient advocates alike and am always open to helping someone get the support they need. With gratitude, chat again soon. 💝

Blast from the Past

A few weeks ago I had major surgery - unrelated to cancer, not to worry - and I can't help but notice how the whole experience took me right back to 2014 when I got a diagnosis of advanced melanoma. If you know me from those days you will remember my tales of traumatic surgeries, bizarre post-op procedures, life-saving immunotherapy treatments, and all that goes along with. 

It is a head space that a cancer patient may endure for all or part of their journey, or they may go in and out of it as the situation strikes - our "Cancer Companion" as my therapist called it. When your Cancer Companion taps you on the shoulder, you may need to sit with them for a while, work through it, maybe hear them out, maybe tell them to piss off, but they will choose when they may leave again or come back. Might as well keep the kettle on the back burner as you never know when they could drop in for tea.  

My cancer companion has found me here in my new home in northern British Columbia, where for the last few months I prepared to have a full abdominal hysterectomy.  One benefit of regular CT scans for surveillance of melanoma (I have been N.E.D. for six years but will be monitored for life to check for recurrence) is that things can show up that one may not have know about otherwise.  I have had some trouble with my "lady plumbing" for a couple of years now, nothing too crazy, or concerning enough to look into - I kind of assumed it was just related to peri-menopause. My Mom seems to get a particular chuckle out of telling me that I am "at about that age." Thanks Ma LOL

But when my new GP reported that I have lots of fibroids in my uterus, and we cross-referenced that with my ongoing situation of low iron/hemoglobin which has led to anemia, it seemed like the time had come to investigate further. I had been having some new tummy pains on top of the monthly aggravation, and some early steps to helping the anemia did give me more energy, so I agreed to a consult with a Gynecologist.  45 seems like a good time for a tune-up, right? 

I'll spare you the gory details, but the Gyno did her exams and biopsies, and gave me a thorough and much-appreciated presentation on my options for remedying a fibroid uterus.  Given all my variables a full hysterectomy sounded like the right option. 

So I signed the consent forms, remembering all the paperwork I filled out to take part in the clinical trial at Sunnybrook in 2014, and sat back to relax until my year-long wait for a surgery date would come to fruition (thanks covid, for the extra delays in our health care system).  On my way out of her office, the Gyno commented that if I was to end up in the hospital or have a blood transfusion to let her know, as that could shorten my surgery wait time.  

Weird, I thought... why would I have to have a blood transfusion?   And went on with my day. 

Fast-forward a month from that time, to a night in early November. I was having a particularly tough time with my "cycle," and was taking a new-to-me drug from the Gyno to help with that. Apparently weird reactions or allergies to random drugs runs on my Mom's side of the family, and I ended up in the emergency room at 3am with the most severe abdominal cramping I have ever experienced. Like - worse than be in labour with and give birth to TWINS bad.  

Poor Mike - my loving partner and reason I moved here to Prince George - not an ideal time to introduce you to this fabulous man, but I digress... Mike sped me to emerg (he happens to be an epic race car driver, actually) and advocated for me when I was unable to speak (Mike is also a melanoma survivor - he takes no guff!). 

An hour or so in, bloodwork assessed, morphine running through veins, x-rays inconclusive, I was able to speak to the doctor while we waited for an emergency CT scan. She said my hemoglobin was dangerously low (hhmmm where had I heard that before..?) and she wanted to give me a unit of blood while we wait to see if I would need some sort of surgery or procedure to deal with this mystery lower-abdominal pain.  

A blood transfusion? Must admit, that freaked me out. Not only did I feel that those are only for people in accidents or emergency situations, I was a bit weirded out by the thought of having someone else's blood given to me.  If you recall, I have always been a supporter of blood donation and always wanted to give it - but it never occurred to me that I would ever be on the receiving end. 

I'm happy to report that they were very careful about the procedure for this, testing my blood again for some sort of matching criteria, blood type etc., and then giving me a special green band with a code to match the labels on the pint that would arrive soon as my new gift. I was nervous but grateful. 

Long story short, two nurses arrived and read my bracelet codes aloud and triple-checked the green card on my new blood, it went in via IV for an hour or so, I had my CT scan (which was also inconclusive), and I was sent home.  The mystery pain had disappeared, and I was repeatedly assured that nothing on the xrays or CT showed any masses or problems that could be related to melanoma, which I was pretty confident was right as I had just had my melanoma-surveillance scans a few months prior.  As far as I know the pain was caused by my weird and apparently uncommon reaction to the tranexamic acid. In any case it was gone, and I was home, exhausted, and with a couple days off work to recover. 

One result of this however, was a phone call to my Gyno to let her know I had had to have a blood transfusion, and a subsequent iron infusion, so.... poof that got me on the emergency surgery list and I was scheduled for mid-December.  *gulp*  Surgery, full on. The goal of this hysterectomy is to get rid of the fibroid uterus, and with it any chance of random crazy pains, but also to stop the extreme monthly loss of hemoglobin and give my body a chance to fix the anemia.  

So here I sit, 3.5 weeks post-op, comfortably tucked in and recovering well in the grand scheme, pampered by Dr. Mike. Can't help but have some mega deja vu though, after a major surgery with all that time to stare at the ceiling between pain-med-induced naps I couldn't help but remember all that I/we went through years ago.  And I have the exact same feeling of that in-between and frustrating phase of starting to feel better but still not being quite up to snuff... no driving, reduced work capacity, etc. This surgery requires a full eight weeks recovery, no heavy lifting and all that stuff.  No snow shoveling either - bad timing with this PG winter! 

While I rest and recover, figure out some adjustments in my career (more on that later), and reflect on "life after cancer" I find myself here, blogging.  Hello old friend!  If you only knew how much credit you deserve for getting me through 2014-2016 wowww... you are amazing. I think of you all the time but never give us time to spend together. Well guess what - 2022 is our year. :-)  

Might have to re-name this blog to "Menopause, Melanoma, and making it to my Maserati"  haha!  But we shall see... and of course I'll keep you posted.  My desire to share (bitch about) medical experiences is never far from the surface, and of course has served as a perfect segue back into writing here on my blog.  Thanks for reading! (apparently I have not lost my long-windedness)

And thank you to my gorgeous grown-up girls who have been a huge support from a distance.  It was weird for us to be so far apart during this recent hospital event, when they were so entwined in the past. But they are excelling at their exciting Toronto lives, and we are always connected by skype (yes, people still use that), TikTok, and bank account haha.  They connected with Mike too - I suspect they warned him of my post-surgery whiny-ness and consoled him by text, though he is a champ caregiver and claims I was angelic and wonderful. Ahh love... 😇 😍  Thank you Mike 💖

As the Stomach Churns...

*insert theme music from old American soap opera As the World Turns*

The other day my Aunt commented on one of my facebook/blog updates:  "Another interesting episode in 'The Life and Times of a Fighter'" and since then I have had this theme song stuck in my head.  Thanks Auntie! ;-)  

I appreciate the complimentary sentiments, and I was thinking on my drive home from the city last night that I have no choice BUT to fight.  There are certainly times (and I often publicly air them here!) that I am sick of the fight, but somehow I know I have no choice but to rage on... my only alternative is to just lie down.  And I've never been great at that.  

Yesterday was my three-months-of-work-fit-into-one-day trip to Sunnybrook for CT scans and oncology consults.  For CT scans at 1:30p.m. I had to be there at noon to register and get my bottle of disgusting chemical water juice stuff.  

To drink the litre of stuff they advise you drink a styrofoam cupfull every 15 minutes.  YUCK  I still prefer the old-school chalky liquid I had at my first CT scan in Collingwood because it's a much smaller bottle and you can just chug it and get it over with.  Well at least I have picked up some tips over the course of the last eight CT scans I have had, and they look like this:

 

Lovely CT nurse said I can add flavouring to the water, and she suggested I bring a glass or cup other than the styrofoam they provide. Bingo!  I was able to drink this jug with less than usual interference from my gag reflex.  And nobody batted an eyelash about me carrying this wine glass around the hospital with me!  Gotta love the anonymity of city dwelling.  

I took my cocktail through the tunnel at Sunnybrook and up to the Odette Cancer Centre to multi-task my drinking time by registering for my late afternoon appointment with my medical oncologist.  This involves routine bloodwork (only three vials this time!) as well so I got in queue while sipping my mango peach beverage, had my blood drawn, then found a comfy spot downstairs in Odette to wait until 1:30.

I arrived back at CT with empty wineglass in hand, and prepared for another needle poke for the contrast dye which is injected at a certain point in the scan.  

Typically this part of the day doesn't phase me but for some reason when the nurse tried for a vein (in the less favoured arm) it hurt SO much!  She couldn't find the artery but must have hit something because I immediately broke into a sweat and the room started to spin.  I tipped over, barely escaping fainting, thankfully I was able to lie down on the stretcher before I tipped forward right in her lap.  The dizzies calmed down once she removed the needle from my arm and was patting my forehead with a cold cloth.  Geesh... some CT pro I am!?!   Embarrassing... humbling.  Scary.  

Got the IV/needle all set up in my other arm and made my way to the waiting room, already feeling nauseated from the jugga stuff.  It commonly makes me feel sick, at both ends if you know what I mean.  I always hope the CT machines are running on time so I can run to the washroom ASAP and don't vomit my hard-earned glow worm juice before the scans are taken.  

As "luck" would have it, CT was running behind... It was a dizzying experience in a hot stuffy room with standing room only and a gag reflex being kept in check only by my awareness of the mustachioed dude beside me wearing just a hospital gown.  I was afraid to make any move for fear he might jump up to try to help me - or avoid any dashing accident I might make?!

I felt as badly for the staff as I did for myself with that waiting room full of people... some days you win, some days not so much. But they handled everyone with smiles as they always do.

Finally it was my turn in the huge machine, a fresh breath of air in the cool technology room.  Lie down on the platform thingy, zip back and forth through the giant doughnut, hold breath, breathe, arms up, arms down, IV needle out, and done!  Had a little chat with the Medical Radiation Technician about the schooling for her job (research for Claire), and off I went back through the tunnel to Odette.

My blood sugar was getting a bit low at this point too which wasn't helping my nausea, so after my beeline to the washroom I nibbled on the sandwich I had brought from home and tried to quell the burning throat sensation from all of that Mio (psychological maybe?).  Waiting for my oncologist appointment I was able to collect my wits, touch base with home, and catch up on my social media.

Into medical oncologist's room and updated her on the latest happenings, as this was the first time we had seen each other since the prednisone attempt.  She was disheartened to hear that my tummy trouble started up again so quickly after taking the prednisone, and she commented that perhaps she should have kept me on it for four weeks instead of two.  *GASP* 

I told her about my conversation with the naturopathic doctor and the probiotics I am taking every night now, and she said she appreciates the effort and yes the probiotics will help any imbalance in the gut, but the damage done by the immunotherapy is still a different animal.  

It's a chemical deal she said, no dietary influence will remedy it if there is damage to the intestinal tract.  SOoooo... off to a Gastroenterologist I go.  No ifs ands or buts about it.  I must.  And a scope will determine the extent of the damage plus they will take biopsies (enter my second near-fainting spell of the day).  

There is no getting around The Boss.  What this lovely lady lacks in physical size she makes up for in quiet force.  

She said we have to get to the bottom of this problem (so to speak) so that I don't end up with further damage and end up in surgery for a perforated bowel.  (I am NOT looking that up to find out what that is... I'll just take it for how it sounds) (Bad.)  I guess my foolproof plan of taking imodium for the rest of my life is not so foolproof after all.  Where my use of ipilimumab ends, my investigation of ulcerative colitis begins.  #melanomaSUCKS

I was open about my reluctance to have a scope etc. and she calmly answered my questions and patted my knee reassuringly as she always does.  

I seriously don't know how she keeps being nice to and caring for me when I am such a pain in the ass. (pun intended!) I give her a hard time about this issue every time I see her.  I can't help it!

I gave up my protest while she examined my breathing and felt around my remaining lymph nodes, until she got to my sensitive neck/throat.  Since thyroidectomy I have had enlarged nodes and some bumps in my neck that we have been watching on CT and ultrasounds.  I asked her if I should see my head and neck surgeon as I did not have a follow-up booked with him.  I was content with her exams and her scrutiny of my quarterly CT scan images, but, always aware of the importance of self-advocacy, I asked just in case.  

She said "Hhmm yes good idea, hey, he is here in clinic this afternoon, how about I go see if I can snag him to come take a quick look?"  Really?  Fantastic yes please!! And sure enough, not 15 minutes later I was in consult with my thyroid surgeon, completely unplanned but very much appreciated!  

I have said before that I feel Sunnybrook has rolled out the red carpet for my family and I in the last two years, and my sentiments were just reinforced yesterday.  Amazing... thanks peeps.. wow what else can I say.

Quick chat with my ever-efficient surgeon and he gave me what he called a neck massage (with the ultrasound machine on a cart). Awesome.  He is really the only person I want poking around my neck anymore so this worked out very well.  

He examined the bumps and ruled out cancer recurrence by the visual aid, but said he would also look at my CT scan to double check.  He said it is some scar tissue from surgery and will likely remain for the life of my neck.   Okay, thank you, I trust him.  

All that said and done, I got my shit together and hit the dusty trail.  Well, the 400 Northbound to go home.  Another whirlwind trip done, and I remain grateful for the strength to be able to take myself down and back like that.  I know there will come a day when I can't, but for now I'm on it.

I am paying for it today however, feel like I've been hit by a truck.. exhausted and extra tummy trouble.  

 

Tomorrow I head to RVH in Barrie for radiation oncology consult (to keep me on file there and always provide a built-in second opinion) and my therapist visit.  

Hopefully I will sleep better tonight than I did last night.  I try to pace out my appointments a bit better than this week is planned, but CT scan is a biggie and therapist at the RVH Cancer Centre is also worth the schedule.  The girls are joining me tomorrow as well and we are meeting friends at Gilda's Club for a visit too so it will be a well-rounded day.  I predict takeout for supper!

Article & Photos © Natalie Richardson

Relaxing Saturday

Another busy week in the house of melanoma momma-ing, wow I am glad I'm getting some energy back as these days make me wonder how we survived the last year and a half while I was napping!?  I still celebrate the small accomplishments but I really love it when they add up to more than the "new-normal" standard I set for myself.  

Couple of random updates from here:

I have lost eight pounds!  Yahoo, I have been paying very close attention to my nutritional habits for the last few weeks, and I am inspired by my body's quick response to the less meat, less alcohol, no wheat, dairy, or sugar regime that I have dug out of my back pocket from years ago.  

I am not new to weight-gain weight-loss due to life or health circumstances -having twins pretty much surrenders ones body to an involuntary increase in fluffiness that takes hard work to remove - and this post-cancer-treatment weight gain is no different in my mind.  I am determined to feel better, get my strength back, resume my graceful-swan mountain-goat-like athletic ambition into hiking and biking... okay, I may be exaggerating a bit there HA! Anyone who knows me knows that I am the clumsiest duckling out there.  I try though, I do try.  LOL

This week I visited my family doctor for a mid-point check-up, I don't go back to Sunnybrook until March so I wanted to have a local run of bloodwork to see how I am doing this far after treatment.  With all of this vitamin-taking and liver resting I wanted to see if my bloodwork reflects the benefits I think I am feeling.  I needed to check in on my vitamin D and calcium levels (I am terrible at taking those hateful supplements) and B12 (wanted to see if the tablet chewing was really working) and thyroid hormone/supplement levels.

  

We checked everything top to bottom and great news, everything is perfect!! Motivation to take that darn calcium!  The only thing a bit low is my Iron...again.  I struggled with that years ago, now time to boost it again I guess.  That's fair, I found an iron supplement I actually tolerate well:

So that's good news, I am detox-ing and de-puffing, which is helping me with the de-stressing.  Vitamins supporting the body systems that have been out of whack for so long, herbal teas to reduce fluid retention and cleanse the liver, and apple cider vinegar to do everything it seems to do, all topped off with essential oils for pain-relief instead of analgesics, I am a happy camper.  There is hope anyway.    

One snag is the tummy trouble.  My medical oncologist (The Boss) is concerned with the prolonged bout of Imodium-need I am having let's just say, and she is urging me to consume a course of Prednisone to try to stop it.  I am desperately against adding a new medication to my regimen now that I am working so hard to clean up post-treatment, especially a medication as harsh as that one.  

Prednisone is a cortico-steroid that can reduce inflammation in the bowels and stop or reduce the damage that has been done by the pacmen, but the side-effects of it include weight gain, mood swings, and a host of other scary things I am trying to leave behind.  

I am putting her off for now as I feel we are still too close to my last treatment to get a good indication of whether or not this side-effect will clear up on its own.  I want to wait, I am willing to see if it stops by itself.  My bloodwork shows I am doing okay, and I am feeling quite a bit better, so the bathroom trips seem not to be affecting my general health.  

I knew colitis was a risk of the ipilimumab treatment, but I am not going to call it just yet.  I am quite aware that it can take months, years to recover from the crap I went through. Pun intended.  Family Doc and I will confer with The Boss if it comes to that point, and in the meantime I am going to get a third opinion from a Naturopath in Collingwood that my CCAC Nurse recommended for colitis-symptoms specifically.  

Dietary-wise, I have been cooking a lot.  Funny for a person working on weight loss, but indeed, I have been cooking and trying new recipes, especially for soups.  With trying to eliminate foods that may aggravate or trigger my tummy trouble, I have been having a lot of fun experimenting with new recipes again.  I used to do this a lot, and it's nice to be back.  

It is such a phenomenal pleasure to cook in my new kitchen, everything is so easy to use, keep organized, and to clean WHOA! Dishwasher is a whole new world.  I have satisfied my cravings for veggies with spicy soups such as this Coconut Curry Sweet Potato soup ....extra yummy with pumpkin seeds or hemp seeds as a garnish.  I am going to blast that cancer with beta-carotene, omegas, and alkalinity!

  

Okay... so body details done, I have lots to report on the mental/emotional side of things too.  I was a bit cranky this week but (maybe that was full moon related?) overall have been feeling pretty productive.  The kids seem to have been extra busy/needy and I think I handled it all right, plus I have been thinking a tonne about my book and the research I have been doing for it.  The preparation for writing is just as important as the writing itself, and I have found a couple of new avenues for inspiration.  Instagram for example, has been a new pet addiction for me this week.  There are SO many creative people in this world, and I am having fun connecting with them! 

I have also been thinking of blog updates as that all goes hand in hand, in my experience.  My book relates to my blog but they will be two separate entities so I am carefully planning how I will mesh the two, or how I will write publicly in the meantime.  I have been reminiscing quite a bit, about my Italy trip and photos, and my old blog which displayed much of my perspective on environmental issues, family environment but also Earth environment.  I was rooting around in my old laptop files and even managed to find a screenshot of my old blog.  Weird!  I had been trying to remember what it looked like and voila! One snow day last week I found this:

I found my old blog post about making sushi as well, I may have to dig it out and re-post.  The girls have been bugging me since the kitchen reno was done to have a sushi party for their friends.  I fear I am rusty at rolling but I guess I won't know until I just jump back in?  I'll keep you posted.  haha

Well, my simmering Spicy Thai Coconut Chicken soup is calling my name, so I need to go for lunch.  Then a walk with Reese, and for supper I am thinking of trying out a Jamie Oliver recipe for a dish with the fresh fennel I bought last night.  I am quite content to have my vegetarian recipes back out, feels good.  

  

(Thanks to my cousin for the photo, via Instagram xoxo)

Happy Saturday!

Testing Testing 1 - 2 - 3

Last week I shuffled off to my scheduled battery of blood tests to try to get some help with how crappy I have been feeling.  I have now processed and can put into layman's terms the conversations I had with my doctors, and I thought I would share these results here so as to shed some light on the mysterious "blood work" I often mention.  

Commonplace in western medicine is to draw blood and analyze the particles within to learn valuable information about a patient.  Anyone with a disease or health issues being monitored by a medical professional is familiar with The Lab Visit.   Even when doctored by a Naturopath there are quite often blood tests recommended or requested to help determine health dilemmas, and that blood work is done in the mainstream hospital or laboratory as well.   

 

<---  That's me.  When I register for my bloodwork at Odette(Sunnybrook) I get a baggie of vials to hang onto until it's my turn.  Those vials are special for the trial and are in addition to the usual seven more vials chosen in the lab.  My record is 23 vials of blood drawn at one visit!

 

As a stage IIIB cancer patient I have blood taken at MINIMUM every six weeks, to monitor my health but also as stipulated by the clinical trial to treat melanoma in which I am participating.  They check for many different things including general information such as pregnancy, HIV, anemia, high blood sugar, bad cholesterol - all of which I consistently test negative for thank you very much.  They also watch closely many other factors including electrolytes, liver profile, cortisol, hormone stuff, and a bunch of things ending in "-cytes."

For the post-thyroidectomy papillary thyroid cancer side of my journey, I also have blood tests every three months plus at random times if needed, based on my feeling of "general well-being."  They check my TSH, Free T4, and Thyroglobulin, which apparently indicate whether or not I am taking an appropriate dose of that thyroid hormone replacement medication every morning an HOUR BEFORE my morning coffee.  Based on that and my general yuck feeling and weight gain, we decided last week to increase my thyroid hormone replacement pill.  Because I had two of four parathyroid removed they also have to watch my calcium levels so they check calcium and albumin regularly, to check on my calcium supplement intake.  

One nice thing about these tests is that I can see them all and understand where I am with them.  Sunnybrook posts them all on my online chart thingy I can log into, and my family physician explains them to me as well and shows me cool graphs of my results.  These tools help paint more of the picture of where I am at, how my history has been, and how I may expect to feel if any of these things change in the future.  

Who wants to know all of this stuff if they are not a doctor?  Some do, some don't.... I do, when it comes to feeling ill and/or fatigued.  I can watch trends and learn about how my body functions. Or doesn't.  

I want to detail some of my results for those who may experience the same things but without the benefit of the amazing doctors I have the privilege of working with.  In all of my charts of results it shows what my blood value is, and it shows the optimal range of where it should be.  Here are some of my favourites:

• Ca (Calcium)  - mine is at 2.11, optimal range is 2.10 - 2.55 mmol/L

• Albumin - mine is at 43, optimal range is 35 - 50 g/L

If calcium is too low (hypocalcemia) then there is risk of seizures, muscle spasms and paresthaesia.  When I get cramps and tingling pins and needles in my hands then I hurry up and take an extra dose of calcium and the accompanying fancy vitamin D thingy I receive by prescription. 

• Fe (Iron) - mine is at 29, optimal range is 7.5 - 32.2 umol/L  

This one is unrelated to my cancer, but I find it interesting because for years after a period of vegetarianism I struggled with low iron, to the point that I was unable to donate blood. I took iron supplements and BBQ'd lots of steak and I am now happy to report this is one that I don't have to worry about.  

• Platelets - 177, optimal 150 - 400 x10E9/L

• White Blood Count - 4.6, optimal 4.0 - 11.0 x10E9/L

• Auto Lymphocytes Abs 0.9 (LOW), optimal 1.5 - 4.0 x10E9/L

I'm unclear as to the details of these results, they are on the low side, but I am told this is normal for someone receiving the type of immunotherapy treatment that I am. Doesn't directly relate to how I am feeling, just internal mumbo-jumbo.

• Free T4 (Partial) - Thyroxine, Free - mine is at 15.4, optimal range 7.5 - 21.1 pmol/L

• Thyroglobulin, mine is undetectable, which is a good thing.   

Thyroid levels seem to be okay, we have increased my daily dose and will check again in September to see how I am feeling, but otherwise we await the thyroid ultrasound in October to check for recurrence.  Sadly there is not a blood test for that.  Nor for melanoma, check for recurrence is by CT scan.

Well if you're still with me after all that, thank you. LOL  If you found that interesting in any way then thank you also, bravo!  

To me it is strange how it all works - sometimes I feel like a guinea pig, sometimes like a science experiment, and sometimes like a sick person who doesn't care about these details I just want my life back.  Regardless, we press on, doing what we can to figure out whatever we can, and we use tools such as these blood tests to make educated guesses about what decisions to make in my health care.   

My assessment of my medical team

In the past year I have gathered quite a collection of concerned medical professionals, they invite me to their workplaces and give me rafts of paper and needle pokes and bruises and they work to keep me alive.  I learn from them, I get scars from them, they make me cry, they make me laugh, they confuse me and they amuse me.  Time for me to give something in return... 

I have mentioned before the "posse" of friends and family that are incredibly supportive to myself and my family, and I have come to recognize the individuals in my posse inadvertently have different roles ie. the Cheerleader, the Researcher, the Curser, the Warden, the Florist, the Chef... My cancer posse is my lifeline. Or my pillow and blankie. 

Rightly adjacent to my cancer posse is my medical team.  I want to share their specialties in the way I see them - maybe it's the chemo-brain perspective or just my imagination running wild - these descriptions are not meant in any malice, and I will not mention their names as I do not intend any slander.  Just sharing one angle of my perspective on all of the medical people that make our health care system go round.  

I'll start with the Endocrinologists - they are the Nerds of the crowd.  Sorry guys, don't get me wrong, I love nerds (have been called one a time or two!!), and we need you brainiacs to sort out whatever mysterious stuff goes on in our endocrine systems.  Who better to be expert on glands and hormonal systems than the nerds, I really don't want them to mess that up! :-)

The Surgeons:  I have had the unique pleasure of experiencing four surgeons to date, and my assessment is that they are the Artists.  They are masters with their hands, they aren't afraid to start something intangible and stick with it until it is done to their satisfaction.  They flit around in their decorative head covers and sometimes even sing during surgery. True story!

The Anesthetists, they are the Invisible Man.  You see their names on your surgery reports, you meet them, and then halfway through your greeting to them zzzzzzzzzzzz they're gone.

The Dermatologist:  She is the Ice Queen.  Flawlessly fair-skinned and floating above her chair, she obliquely addresses my situation with the air of knowing that it is because of people like me she has to shake her head and tisk any time anyone anywhere sees a ray of light from the big bad sun.

The Radiation Oncologist (with whom I meet every six months but have not actually had her treatment):  she is the Goth.  She likes tattoos and to zap people.

The Social Worker: the Heart. The private place where I can indulge my emotions, good or bad... or as the Heart would say: embrace the comfortable and the uncomfortable feelings.  

Nuclear Medicine Physicians:  I have not yet met them but I suspect they will strike me as the Experimenters, they are the children of those fathers who secretly built rocket ships in their basements.  We actually had one of those in the small town where I went to high school... I remember their street, and the eerie glow coming from the end of it. 

The Medical Oncologist:  She is The Boss. The MOB Boss.  She is on top of everything, she's smooth, she's good, she's got my back, she wears leather, she's my very own Tony Soprano.

The Nurses:  they are the Flowers.  They are all over the medical garden, at the reception desks, on the phones, in the hospital rooms, at home, everywhere you want them to be and sometimes where you really don't want them to be, but you appreciate them regardless. There are sunflowers and daisies, aloe vera plants and forget-me-nots, roses, definitely not pansies!  And there are also the likes of stinging nettles and thistles (such as the one who I reported to her supervisor for yelling at my elderly/disoriented/post-op neighbour in the middle of the night. Grrr!), so beware... treat them all with sugar-water and step lightly, they have the ability to make or break the scene. 

The Lab Technicians, obvious: Vampires. 'nuff said. 

The Naturopathic Doctor: the Neglected House Plant.  I want to run to my valuable green friend but I can't find my way to her from this pharmaceutical maze in which I am trapped.

The Radiologists: Sherlock Holmes.  They read black and white pictures of my insides and discover clues to my medical mysteries. It is Professor Plum in the Liver Room with the Poisoned Apple!

Mmm..the Pathologists: oh wow, I haven't yet decided, as I try not to think of them too much, they have only given me bad news to date, well except for the girls' moles, they did redeem themselves a bit on that one.  I imagine they liked to play in mud when they were kids, they are the Mud-Pie Makers.  They dissected dead creatures they found in the dark forest and created haunted doll house fences with their tiny bones.  

The Family Physician, She is the glue that holds it all together: the Saviour.  She makes sure I am sitting down before she gives me bad news, and she picks me up when I fall anyway... she medicates my pain, and soothes my shattered nerves, she answers my questions and thinks of me even when I am not bugging her. She kicks my ass.  She calls me to cheer for the good news.  She is my Interpretor, my liason with the world of oncology, she is my mother, my sister, my guardian, and my Hero.  She is the person I want to be when I grow up. 

Article © Natalie Richardson 2015