New Dermatologist

So..... I have mentioned before my somewhat chilly relationship with the Skin Doctor in my life... (comes with the territory of an ex-sun-baby melanoma patient I suppose) ...to the point of us CO-FIRING each other.  

My lovely Family Doc saved me yet again - I met my new Dermatologist today - right here in Meaford! 

A quick in - and - out in Ambulatory Care with a Derm on a once-monthly visit to Meaford Hospital determined me all-clear of any worrisome skin lesions. Yay that's a great first step!  We had a quick chat about my history, and of my future, of CT scans for monitoring post-clinical-trial, and we agreed to see each other again in six months.  

Sadly, come 2017, after a 15-year stint of monthly trips to Meaford, my new Dermatologist will be seeing patients in the Big Smoke only, so.... I will go see her there!  With my stage of melanoma I have as much chance of having a new melanoma on my skin as I did two (or twenty) years ago; a stage three diagnosis is more likely to re-appear internally than on the surface. But I digress...

I offered her a gift in thanks for checking in on us rural patients, by form of my article in Escarpment Magazine this month.   I explained that I am an aspiring Writer exploring the platform of a topic very dear to me, that of melanoma education and awareness advocacy.  

I flipped to the article in question and to my surprise she said "That's YOU?  Just this weekend we were talking about this article!"  She went on to say how she thought it was great that someone would take the time to write about and share this topic, and we briefly discussed the importance of changing the conversation regarding skin health and tanning etc.  I told her about how I have been sharing my story in the name of trying to help others to avoid a fate such as mine... Save The Skin You're In! 

In my new Dermatologists name I have decided to summarize my advocacy work in one post (to date), and for any new readers, Thank You.  Please feel free to click and share away.....

  

 

 

 

Gastroenterologist: To Be, or Not to Be?

That IS the question.  More like... My relationship with the Gastroenterologist... will there be one?  or not.  Frankly, I'm still leaning toward NOT.

I have had a busy week of medical appointments to start the month of June.  Two trips to Toronto and plenty of anxiety, dread, and confliction.  I await results from the two rounds of bloodwork I had on Monday, as well as the routine head to thigh CT scans I had also at Sunnybrook on Monday.  

I haven't been feeling well, physically or mentally; CT scan drink plus contrast dye IV typically provide me a couple of days of tummy trouble and fatigue, and this time I have been in and out of a low-grade fever as well.  It's stupid - I hate it! *stomping my feet in tantrum*  I was a good girl though, and rushed to my family physician immediately on Tuesday after Monday's Toronto trek.  Family Doc has note of all of my experience and will be in touch upon receiving my test results. 

Part of my family Dr. de-briefing on Tuesday included an update on the Gastro situation.  

Quick re-cap: along the course of my ipilimumab (immunotherapy) treatments on clinical trial August 2014 through September 2015, I received some damage to my intestinal tract, and it presented itself for a while as some pretty persistent need to stay close to a bathroom.  (I am still squeamish about using the word diarrhea on my blog but I digress...)   20-ish% chance of getting colitis from these treatments, as I was aware when I signed the paperwork to become a fortunate guinea pig recipient of a drug that could "cure" my melanoma.  As chance would have it, I am dangerously close to a diagnosis of ulcerative colitis, but I am fighting it all the way.  

In March I met with a Naturopath to get a 2nd opinion (3rd..4th..), in preparation for my meeting with a Gastroenterologist at Sunnybrook.  We decided that I should begin taking 50-billion multi-strain probiotics every night.  So I did.  Most nights before bed I have taken four capsules of a reputable Canadian-made 12-strain probiotic and ...drumroll please... my tummy has vastly improved.  Not perfect, still have a random day or two per week surprise dash to the bathroom, but it is nothing like the exhausting daily struggle I was having.  

My medical oncologist is worried about said tummy trouble, and strongly encouraged me to have a colonoscopy, to assess the damage done by our beloved pacmen.  I refused scope without first having a consultation with the Gastro (which has made Onc slap my wrists - but I wanted to try the probiotics first! Not to mention I am only 8 months post-treatment so it is reasonable to expect my body will need time to heal).  Finally last week I had a consultation with the newest member of my medical team.  

Interesting gentleman, quite close to retirement but still going strong, with a waiting room full of patients wanting his help with their varied experiences with Crohns and Colitis.  He gave me a quick run-down on the most common causes of diarrhea (high-fibre foods, dairy, caffeine, gluten, alcohol) (most of those I already avoid...except..um of course the alcohol), and ran over the statistics of possible risks my intestines could face during and after a scope. (ick)

I informed him that in the time that I had been waiting for my consultation with him, my tummy was much better, and told him about the probiotics (which is the only thing I have changed in my diet since March).  

He gave me a haughty explanation of how a probiotic wouldn't work as it is an unregulated natural product that is a shot in the dark very unlikely to affect my immunotherapy-induced inflammation. "Just as we wouldn't treat an infection with the wrong type of ANTIbiotic, we couldn't expect one PRObiotic to help if we don't know what the exact problem is." (but I am taking a 12-strain probiotic. I kept quiet as I would have appeared to be arguing) 

He also said I should not use the refrigerated probiotics found in a health food store, that I could catch some worse bug from a faulty bacteria floating around in the probiotics.  He said I should seek out a pharmaceutical brand in a drug store.  Really.  Hhmmm that goes against everything I know about probiotics. 

He suggested that I stop taking the probiotics altogether for a week, and if the diarrhea flares up then take the probiotics again and it if stops then he would say I am the ONE person that works for.  *huff* 

I asked him if the scope would show damage done last year, and if yes, would the only cure be to take prednisone?  Because if so I could save him some time as I will NOT be taking prednisone.  He puffed up and said "WHY NOT? Prednisone is man's best friend!"  I gaped in disbelief as he went on to ask me if I was saying that if I was lying on my deathbed from diarrhea would I refuse to take prednisone and just agree to die?  I said NO, but I am not in that situation right now! Aarrghhh  

I asked for help to understand how immunotherapy had damaged my digestive system, and if it can heal itself with time (and/or probiotics, which I didn't mention again), and he said well Dear, I don't know.  "These immunotherapy drugs are all new territory for us and we don't know."

Well that's what I needed to know!  I had refused scope appointments because I wanted to hear that - ARE we going to find anything concrete out from a scope?  Because if my tummy is feeling better and I am managing it on my own then WHY undergo another invasive medical procedure?  I'm all for being a guinea pig, but I draw the line at some tests that are costly to the medical system and to my own mental and physical well-being. 

I say that at the risk of offending my wonderful Medical Oncologist, the Boss.  She was adamant that I have this test, and I am still considering that I will, if for the purpose of her research.  Or if I have another flare-up.  I was planning to speak to her about that in our appointment on Monday, but she wasn't there, so I escaped the slap on the wrist I am sure I am going to receive.  

Her stand-in happened to be the lovely Dr. I met at the Queen's Park event, and I filled her in on the situation.  She said she would relay my experience to my Dr. and have her call me upon her return from the melanoma conference in Chicago.  

I have mentioned before that I am amazed at the amount of self-advocacy a patient has to do in order to find balance in a complicated medical situation.  I know that I risk offending my Oncologist by refusing the scope, and I am not doing it out of disrespect, I am simply following my gut feelings ..oops, pun not intended.  I just want to get over all of this stuff and move on with my life.  Isn't that what I'm supposed to be doing?? Yes, I am stomping my feet in tantrum again.  I am incorrigible. 

So.... I relayed all of this to my ever-calm family practitioner and she agreed that is is completely acceptable to wait it out and see what happens.  She agrees with myself and the Naturopath about the probiotics, and encouraged me to continue as I have been.  If my tummy trouble persists or flares up, we will cross that bridge then.  And I will have the scope, but closer to home, with a copy of the report to go to my team at Sunnybrook.  

The Gastro also left it with me to call back if I want a scope or another appointment, but until then I am free to go... he did not consider a scope urgent, especially after my report that things have improved since the winter.  Perhaps we will meet again, perhaps we will not.  

Family Physician's Role in the Cancer Journey

I have the relatively unusual distinction of having ten medical professionals involved in the care of my two primary cancers: metastatic melanoma and papillary thyroid cancer.  Among this collection are Oncologists and Surgeons of various specialty, a Dermatologist, an Endocrinologist, a Gastroenterologist, and even a Naturopathic Doctor. 

Add the complication of long-distance travel to see said professionals, and my calendar notebook is a kaleidoscope of sticky notes and forget-me-nots.  Names, phone and fax numbers, dates, and directions to offices in the maze that is Sunnybrook Health Sciences Centre crowd my notes and cause me the odd moment of confusion.  

There is one individual who tracks all of this even better than I do, and that is my Family Physician, a.k.a. Primary Care Provider, or the Saviour.  She has known me for years, she has cared for my children at every bump and (bone) break, and she gives me straightforward advice about cancer.  She is organized and has detailed notes about my health and history, and she magically delivers questions in a painless way, even when I am trying to dodge her about something. 

She gets all the shit jobs really; she was the one who had to tell me - TWICE - that I have stage 3 cancer, she kicked my butt into gear when I was panicking about surgery, she closely monitors my thyroid hormone levels, AND she is in charge of my day to day complaints (of which there are many, if you can imagine!?  - I should issue a formal apology to the other patients in her practice who have had to wait after one of my "quick" appointments).

She has spent countless extra hours researching treatment options for me, she translates medical speak into common language, and she asks the questions that need to be asked, of myself or of other doctors in my circle.  She patiently explains my CT scan or bloodwork results, and she always offers to print them out for me.  She goes above and beyond by expeditiously filling out employer and insurance forms, and she even communicates with me after hours if we have an urgent concern.  

She also maintains an air of reality about my situation; for example, when I was first diagnosed I exclaimed that I wanted to have every cancer test known to mankind, and she gently explained to me all the tests I would not need as they are not related to my particular type of diagnosis.  She also said some of the tests could wait as I would become simply "Doctored Out."  And she was right.  I have been pacing myself on the peripheral tests unrelated to melanoma, and I am definitely Doctored OUT.  (I say that with all due respect of course)

I am fortunate to have the thorough General Practitioner that I do, as I am aware that it isn't like that for every patient.  It could be considered that we have a shortage of GPs in Ontario Canada, so many patients do not have the luxury of a choice in family physician, let alone the quality of care they may (or may not) receive.  

My advice to a patient in a dubious or uncomfortable relationship with their family doctor is to be prepared, stay strong, and ask LOTS of questions.  

It can be intimidating to be in the clinical office, but being honest about your fear or anxiety will help build a straightforward rapport with your doctor.

• Make detailed notes of any questions you may have, and prioritize those questions just in case you aren't able to get them all answered if there is a rush.
• When calling to book your appointment, be polite but firm with the assistant answering the phone.  They are trained to be gatekeepers, carefully guarding the precious resource that is their employer, but if you treat them with respect and explain that you may need extra time with your doctor in order to not go over the allotted time slot, they will usually soften. 
• If they cut you off on the phone?  Call back.  
• If that still doesn't work?  Lay the "Cancer Card" - softly ask them how they might wish to be treated had they been diagnosed with a life-threatening disease.  They cannot withhold the care of your physician.  Yes we have to be considerate of others' time and availability, but we also have to fight for ourselves.  To me, self-advocacy is as important as waking up every morning, so every now and then I place a well-timed hissy fit.  
• Arrive for your appointments slightly early, and be prepared in case you have to stay later if the appointment is delayed.  Not always easy to coordinate rides and other appointments etc., but it is imperative to keep a cool tool at these times.  What else is more important than your health care - Nothing!
• Ask for a second opinion on the big stuff - or on any stuff.  You're not going to hurt anyone's feelings, you are simply looking after your own best interest.  All's fair in Canadian health care. 
• Be organized, keep notes, have a friend or family member with you at appointments whenever possible.
• Follow your Dr.'s instructions, unless your gut tells you otherwise - and if it does tell you otherwise, ask more questions. Let your doctor know that you don't feel good.  They are humans after all... just like us.  

The Family Physician is an integral part of the cancer care journey, or any extended health care situation.  They coordinate, monitor, translate, advocate, and guide our best interests.  Whether or not we want to be in the situation we are in, we are best to make friends with our primary caregiver, as they are there for the long haul.   

Hard to see in this very well-put graphic, but that blue horizontal arrow at the bottom?  That is the Family Physician, in the cancer journey. All the way through it.

 (click for larger image, it will take you to the website of the Ottawa Hospital, with an excellent article all about navigating the cancer journey)

Note:  

These points are just some suggestions based on my own experience with cancer care and the medical system, in Ontario, Canada.  Some or all of them may or may not be helpful if you are a patient of another affliction(s) and/or you live in another part of the country or world.  I wish you the best in whatever medical journey you may be on.  

And for the record, I am not a medical professional... I'm just doing time in the system. 

And to the lovely Dr. E MD, this post is dedicated to you.  Thank you for all of the crazy and wonderful things you do for my family and me.  You serve as an example of what I wish every cancer patient could have in their family doctor, their family member.  xoxo

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