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. 💝

Patient First

I woke up this morning to an email from youTube that my favourite account had posted a new video.  Naturally, I clicked on it, watched the video. Then I snuggled back down, and spent an hour lying there watching more and more (great job youTube, just as you intended!).  As I lay there daydreaming about my favourite car, I thought about how I have had little time to write on my blog anymore.  I rarely have a quiet Saturday morning to myself anymore, and I rarely put money into the savings account that is to fund the lifestyle which is portrayed in my video-watching guilty pleasure this morning.  But today I was brought back into the room, so to speak.  

Hearing the rumble of the subject in the video reminded me of why my blog is named what it is - and thinking of blogging reminded me of why I started in the first place.  

I am a patient, first.  I am a writer, patient advocate, and now full-time Managing Director of a fabulous Canadian skin cancer patient support organization, but I am a patient first.  Almost four years ago I was diagnosed with metastatic melanoma, and I remain at high risk for recurrence of the disease. That will never change.  In the time that I am here I feel it is my responsibility to talk about this, share it, help others the way I have been helped.  

But there is also a natural progression that comes with all of that. I am learning so much about the disease, and about the landscape of treatment access (or lack thereof) in Canada, that I sometimes find it difficult to separate my work from my personal, especially in a public forum such as this blog on the big ole' world wide web.  I don't want to become one of those advocates that becomes just another name in the melanoma world that can't relate to those who are newly diagnosed.  

I am now farther along in my journey and one would have to use the tags to the right side of this screen to go back to see all of what my family and I went through.  Not many people want to do that, which is okay, it's there if they change their minds, but I still want to stay relevant, let others know they are not alone.  

Though I am now working in the field and traveling a bunch to further this work for Canadian patients like me, and haven't had time to write about it as much, I am still dealing with the every day challenges of being an advanced melanoma patient.  

I still parent my kids 24-7, I still have CT scans (and Scanxiety!) every six months, I still have bloodwork every six weeks to monitor my health (because I have proven inconsistent in taking my prescribed meds and supplements - tisk!), I still have the very valid fear that the next mole or bump or swollen lymph node could land me back on the surgeon's table, and I still really fear the possibility that I won't get treatment if I need it, because my government doesn't deem it (but I digress..). 

I follow several well-known melanoma advocates and bloggers around the world that were a huge support to me personally; we went through a lot "together," they helped me so much (though they are not aware of me LOL).  Actually in October in Australia after one session I was on Twitter and realized that I had been sitting LITERALLY two seats behind one of my fave Aussie bloggers!! I missed my chance to meet her but we did have a brief Twitter conversation afterward, where I could adequately fan-girl over her presence in the room I had been in. Yah, you remember me Naked Gardiner, I know you do. ;-)

But sometimes I read their articles and feel they are harder to reach than normal people, normal patients.  These blog celebrities shared their painful experiences, their challenges and their triumphs as they encountered them, as I have, but they have moved on to the higher-level advocacy that comes with the territory.  When I was first diagnosed I didn't understand those things, and I felt they weren't entirely accessible.  
Now I do understand those things, and I want to remain accessible. That's part of why I don't post as much as I used to, the stuff I talk about on the advocacy front is perhaps more applicable to those who seek out an organization like Save Your Skin, not necessarily "regular people" like myself, who are simply melanoma patients.  But I still am that regular person, and I still want to speak to melanoma patients.  Give hope.  You too can survive.

Recently I have been in the situation where my blog has come up, and I have told my story, and shared tears with the new friends I made in that conversation, and I remembered that this is where it all started.  My blog to keep friends and family updated, turned place to vent my whiny fears and frustrations, turned dream career, is still the mainstay of my goals for my future and that of my kiddos.  

I still want to move to Italy and live in my Maserati. Just saying.  (and my boss says no problem - I can work from there just as well!)

But in the meantime, I will stay here, get the girls through high school in the town they have lived all their lives, and continue my work in the Canadian melanoma space, as an advocate, as a patient.  

Actually there are a couple of opportunities on the horizon where I will be sharing my story in a public space again.  Both happen to be in Montreal (poor me, I know, having to randomly fly to this lovely city); one is a speaking engagement in which I will share my story with a room full of pharmaceutical industry representatives (who are wonderful people by the way - don't let the tree-huggers make you think they are the evil in the world) (THEY saved my life).  

The other is a filmed interview for a website that was launched in 2016 in conjunction with our patient project "Melanoma Through My Lens."  More to come on these, I will be facebooking them etc. as well as sharing them through the Save Your Skin Foundation website - shameless plug - on which I spend a lot of time writing and updating. 

In the meantime I'll be working on our report from attending the Canadian Melanoma Conference in Banff last weekend.  Since I have heard that there is such a thing, I have wanted to go, so that was a very cool experience.  I was fortunate to meet in person many of the Oncologists from around the world that we work with on a regular basis, plus, from Sunnybrook, my very own Medical Oncologist AND my Surgical Oncologist (who I haven't seen in a couple years!) were there and presenting on the agenda.  It was an unspeakable honour to be in the same room as all of these melanoma experts and to be able to bring back their teachings to our knowledge base. 

Was awesome too, to be having lunch with my Surgical Onc. and she recognized me, I certainly didn't expect her to.  I had spotted her name on the program and planned to stalk her at the conference teehee - She said she saw my name as an author on the scientific poster displayed at the conference and wondered if I was the same one as her patient - sure enough it is me. :-)  We had a nice chat to catch up.  

And yes we did just complete our poster, we are working to have it peer-reviewed, and possibly published at the Society for Melanoma Research Congress in October in Manchester UK.  I am making that a personal mission.  The poster is based on our patient survey results from last Fall, about the mental wellness of patients after a melanoma diagnosis.  Feel free to check it out here.  We are continuing work on this project so I'll keep you posted.  hehe  posted... on the poster... get it  ;-)    OK time for me to stop rambling and get to work on the report.  

Happy Saturday All, and thank you again for your interest and support (extra thanks if you have made it this far in yet another long blog post).  

For your viewing pleasure, here is a photo of my future Maserati.  Mine is the black one, although I haven't yet decided whether or not it will be a convertible... I'm leaning toward not, to help protect myself from gratuitous sun exposure (for which I used to be a glutton, hence the melanoma blog).  

PS - Eleven years ago I spent a week in Florence, and next Tuesday my daughter is going there on a school trip.  Emotions are high in my house at the moment, as this is the first time the twins will be so far apart for so long.  And because I am jealous as hell. LOL  I want to go too waaaannhh 

CT Scans clear, and blue skies ahead

Two months since I have last written here - that is a record.  Not one I'm proud of, geesh, blog neglect tisk tisk! 

Has certainly been a busy couple of months, being back to work has really kicked my butt.  In a good way for the most part - don't get me wrong - I love my new job!  The people I get to work with are inspiring, caring, intelligent, and the work we do is real.  We are working together to try to improve cancer care in Canada, by way of fighting for patient access to immunotherapy treatments that many people don't know are not currently provided in our country. 

My last post was the night before the conference I helped to plan in Toronto, the IO Network Patient Leader Education Summit March 31 - April 1, 2017.  I was nervous for it; our team had put a tonne of effort into inviting patient advocates from across cancer types to meet in person, to discuss how we can all work together to help save lives.  Long story short, the meeting went well, there were two days of exploratory discussions, and a solid foundation was built for future collaboration.  I will post more about it when we launch the Network website and publish the report from the conference.

From that busy weekend in Toronto, I went directly to my six-month oncology appointments at Sunnybrook: bloodwork, CT scans, exams and consult with the Boss, and another night in a hotel.  Though it had been six months since my last checkup I moved through the routine as if I had just done it the week before.  I fell into quick conversation with my friend the CT Nurse with the twin girls close in age to my own twins, my backpack was light, my wardrobe was CT scanner-approved, and I got a good seat in the D - E waiting area at Odette. 

It was a pensive day for me, as it happened to be exactly three years from the day I first had my troublesome mole removed in Collingwood.  Three years to the day of my first surgery for melanoma, I lay in the CT machine, tears streaming... I walked like a zombie through the tunnel underneath Sunnybrook, and sat quietly waiting for my consult without any desire to read or fidget, my mind racing.

I have been struggling with many three-year milestones the last little while.  Three years since mole excision, three years since needle biopsy, three years since stage IIIb cancer diagnosis, three years since debilitating node dissection surgery, three years since I have become afraid of the sun, three years since my family has been burdened with my lot in life.  

Strange to be thinking this way, trust me I know, and it is not intentional.  Seriously - I can hardly remember my own postal code let alone random dates in April and May.... but these I remember.  

In any case, I got out of the city after that round of appointments, grabbed some pad thai for the girls on the way home, and snuggled in with my puppers to rid my soul of the trauma (and vats of tea to rid my kidneys of the CT contrast dye).  A couple of weeks went quickly by, I finished my post-conference tasks and got back into our home routine of being grateful to be alive (and not dwelling on the three-year mark), plus I had the distraction of facilitating a website upgrade/overhaul for Save Your Skin Foundation. 

 

The Easter Bunny came, and though I was spoiled with flowers and chocolate, I also got a call from my beloved family physician, with the news that my CT scans were clear.  No Evidence of Disease - YASSS!!!  Onward an upward my friends!  I got another six-month pass, therefore I get to cram as much life as possible into the time until September when I go back for the next round of tests.

And cram in life I have been, as evidenced by my lack of indulgence in personal time for my favourite pastime, namely, writing.  This is a particularly busy time of year for my family anyway, with Melanoma Awareness Month being May, my daughters' pending birthday, and the end of school year rush of deadlines, events, and then... high school exams.  

I have become acutely aware of my time spent on various activities, and I have noticed a change in my personal relationships as a result.  Some of my closest friendships have morphed into a sort of shadow of what they were before, and I am powerless to change that at this time.  I have several hand fulls of single parenting and home maintenance, work hours and physical limitations, taxi-ing to teenagers' events and jobs, not to mention my long-standing love affair with quiet alone time.  I believe this will resolve itself with time - I will either get better at it, or my kids will grow up and I will have a clean, quiet, peaceful empty nest.         Love you girls! ;-P

 

In addition to lots of inspiring work-work on my to-do list, I have a few posts planned in the coming days, one being about melanoma awareness month and the efforts I am supporting with regard to patient advocacy.  I am also catching up on spring cleaning and garden work - my beloved canine has (accidentally) compounded the damage done to the flower bed closest to my front door where the driveway gets snow-plowed in winter; poor plants don't stand a chance with him running through, I think I will plant ROCKS.  

I do have additional appointments on the horizon: head-to-toe with my new Dermatologist in July, ongoing thyroid surveillance, and in the second week of June I will be at Sunnybrook to sit on a Melanoma Patient Education Panel.  Will keep you posted!  

Thank you

Last week's milestone, and other news...

We are two weeks into high school, and still alive... well, mostly alive - Claire had a little trip to emergency last week after an ankle injury in gym class.  Thankfully her ankle is not broken, but it is painfully sprained.  This renders her helpless for the girls' newspaper routes, so that responsibility rests fully on Cass until her sister is recovered.  Have I mentioned the paper routes before?  Oh no? Maybe because I have been trying to block them out of my memory!?!

This summer I got the bright idea to encourage my offspring to start earning their own money; summer jobs did not pan out as hoped, but local newspaper carrier routes did.  This is where the story should stop: I should have thrown out the flyer and not have helped Claire contact her potential new boss... BUT.. anyway, long story short, both girls have toiled six days per week since July delivering papers and flyers in our neighbourhood and downtown, and they have reaped the benefits of the direct-deposit world.  (this did NOT save me any money at back-to-school-shopping time, just saying)

In any case, none of us are loving the paper routes, but it is a great life lesson.  I keep telling the girls if they work hard and make good choices then this may be the worst job they ever have... and they'll be able to tell their children how they had to SLAVE over newspapers, biking them all over town, in their pajamas, in six feet of snow, UPHILL... BOTH WAYS!

I'm finding it hard to believe that it is the middle of September already.  We are all adjusting to school schedule time again, and the girls' autumn theatre production rehearsals begin again this week.   And at the end of next week I will be one full year post-treatment for melanoma.  

I get to mark this anniversary with a small graduation.  Last Monday I had my quarterly check-up, bloodwork, CT scans and consult with my Medical Oncologist at Sunnybrook.  Pending clear scans this time around, I will move from CT scans every three months to every six months!  

I knew this was coming, but I didn't know how I felt about it until the actual moment when my medical friends said OK then see you in March!  MARCH!! 2017 YAH!  I wished them a speedy Merry Christmas and high-tailed it outta there before they could change their minds.  I swear that was the fastest I have ever made it to my car in the far parking lot.

Sitting in the car for a moment I caught my breath and absorbed the news.  Six months - that is wonderful.  But for a cancer survivor it can also be very frightening.  To move farther away from the safety net which is the Oncologists' close and careful watch, allowing more time for any undetected diseased cells to roam around doing their evil work, can cause some hefty anxiety.  Can't go on forever having 3-month scans, I know... but...   I started the car, blasted some "Victorious" and charged up the 400 Northbound.

Still have to wait about three weeks for the CT scan reports, but we are all planning on them being clear - No Evidence of Disease (NED).  My June scans showed a small inflammation on my right lung so that has had me a bit stressed, but... as my Gramma always says: worrying won't help it at all, so just live on and deal with it if it happens.

One snag - I still have the issue of the tummy trouble, so my Oncologist requested that I pursue the examinations she had ordered in the winter.  Dammit, I'm not going to get away with ignoring it - she wants to rule out any other damage or trouble from the ipi treatments.  I am going to pursue these tests closer to home though, through my family doctor.     

Otherwise living on I am, newspaper routes, theatre auditions, high school lunch arguments, Huffington Post blogging for Melanoma Through My Lens (coming soon!), and continuing to work through my fears toward the goals I have been setting for myself.  

  

Day 577

All this talk about melanoma has almost made me feel badly about neglecting my other cancer baby: papillary thyroid cancer.  

577 days ago, a few months into my melanoma diagnosis, I was diagnosed with a second "primary" cancer, a tumor on my thyroid gland.  It appeared on my CT scans for melanoma and I was instantly referred to the head of Head & Neck Surgery at Sunnybrook, in late September, 2014.  I had surgery to remove the tumor - and my thyroid gland as well as 2 of 4 parathyroid - in December 2014.  

It was at this point in my melanoma journey I truly moved from the denial stage to a deep-seated fear.  

The painful needle biopsy of a lymph node in the base of my throat showed a metastases of cancer from a tumor (on my thyroid) to the surrounding nodes, but it confirmed that the cancer spread was that of a new type of cancer, not a melanoma.  Believe it or not, that was the good news.  

Melanoma spreads silently, appearing anywhere in the body other than its original site, but this... this was a new one.  Which made it "less dangerous" than that of a spread of melanoma.  And this is where my fear deepened.. my fear of melanoma that is.  

Here I was, with a double-whammy of cancer (which is now a source of wary fodder in our household), planning surgery and treatment of papillary thyroid cancer in between that of melanoma.  

For those of you who have been reading this blog all along, you understand why I have been so pissy.  For those of you who may be new to this blog.. please understand this is another reason why I have been so pissy! 

I thought I would re-cap the highlights of my journey through thyroid cancer, for anyone who may wish to hear more about it, or may wish to connect if they are in the same boat.  I had thyroidectomy in December 2014, I had radioactive iodine treatment in March 2015, I take Levothyroxine Sodium 200 mcg daily (one hour before coffee every morning!) for thyroid hormone replacement plus TSH (Thyroid Stimulating Hormone) suppression (due to my intermediate-risk of recurrence).   

Today's melanoma anniversary also marks the time that I would be able to become pregnant again should I so wish to do (which I do NOT); I signed a contract saying I wouldn't become preggers for a year after I-131 Radioactive iodine treatment as it would harm a baby.  I am now deemed clear of said radiation.

In any case, here is a re-cap of links from my thyroid cancer journey since September 2014:

Well... THAT happened.

Dreaming of morning coffee on a sunny day

Lymph Nodes

Radioactive Iodine Treatment, Part 1

Low Iodine Diet

Highs/Lows of my 2-week LID

Radioactive Iodine Treatment, Part 2 

Radioactive Iodine Treatment, Part 3

Life After Thyroid Cancer 

Nuclear Medicine Scan - Thyroid 

PS - the 577 days was slightly more difficult to calculate than the 732-day(2 year) melanoma anniversary, so I used a little calculator site. 

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

Farewell February

Who swims in Georgian Bay in February?  

This Guy:

Spring-like Weather 

+ Walk at the Beach 

____________________

Dog who needs a BATH!

Super fun though!  I don't mind one bit that winter/spring Sunday afternoons usually find Memorial Park deserted of visitors.  Reese and I walked all around the camping area and trails and back down the road to the beach, took the long way through to the dog beach and went off leash.  Whoop whoop!  

 

Dog remembers how to frolic at the beach yay!  He ran right for the water, went in to the armpits, then ran back out and in and out and in until he found the best stick ever and zoomed up and down the snowy beach rock with it.  It was pure pleasure just peacefully watching him and the waves washing up against the ice-covered shore.  And then the digging began... ah yes Labs can become obsessed with rocks and this Chocolate is no exception.  After a good half an hour of digging all around chasing this ONE particular rock he was panting and quite sandy and messy.  

Someone is going to sleep well tonight!  And yes he will be allowed on bed because he had a bath immediately upon getting home - buh bye beach mud!

I think I will sleep well also, it is almost the end of dreadful February.  Tuesday brings March and a whole new perspective on winter.  The days are longer already and the sun shining in the window on my back is nicely warm.  

March is busy for me and I'm looking forward to it (well, most of it).  

Next week I see my Oncologist at RVH in Barrie after having coffee with a friend at Gilda's Club, plus on Friday I am seeing a Naturopath who specializes in colitis/symptoms to see if I can avoid receiving the referral to a Gastro Dr. at Sunnybrook which The Boss (my Medical Oncologist at Sunnybrook) wants to give me.  The prednisone worked but now that it's stopped, the problem it cured is back.  :-(

March 6 is Lymphedema Awareness Day, and the the 7th I go to Sunnybrook for my 3-month bloodwork, consult, and CT Scans.  The 9th has me back at RVH for Therapist appointment, and the following week is March Break and the girls and I will be making a couple of trips to Barrie, RVH for therapist and a visit at Gilda's Club, plus the girls received tickets for Christmas to a rock concert at Molson Centre.  yikes?! ;-)

The week after March Break I will be working hard to help promote a little project I helped along in December.  Stay tuned!   

Well that should pretty much do it... back to quietly writing while Reese snores off his post-bath-and-fresh-air-frenzy.  Tacos were requested for supper tonight, plus I made a pot of the girls' favourite Italian Sausage Stew for their lunches this week.  Talk to you next month! LOL