Skin

A couple of remarkable things happened today during my skin review visit to the Dermatologists' office.  1) I had a surprise "mole excision"  and 2)  I stole a very informative publication from the waiting room. 

In my routine skin examinations every three months, the Doctor uses her tiny light with a little magnifying glass to look at all of my pigmentation, surgical scar areas, funny-looking moles she keeps journal of, checks through my hair and all over head to toe, actually literally, I have a mole between two toes on my right foot that always freak out my esthetician at pedicure time, I have had it all my life.  She also answers any nervous questions I have conjured up in the weeks since I have seen her.  

She intimidates me like no other, she is my least favourite of all of my medical appointments (no offense to her, it's just the nature of the beast:  she is the one to lay blame on my sun-loving habits and express little sympathy over my willingness to repent in darkness for the rest of my life in exchange for never having to visit a Dermatologists' office again).  

 

I always dread this meeting. Yes, I dread it even more than the ones where I drink the vile stuff sitting in a hospital gown in front of a bunch of strangers and then get poked with an IV needle and exposed to deadly radiation in order to have CT scans and then tummy trouble for a week.  Just saying.

Today we discussed a few moles we are watching, she measures them every visit, and examines any new paranoia spots I may have discovered.  I am to watch for changing skin pigmentation of course, as well as "lumps or bumps" especially around my primary site on my hip.  The melanoma surgeon asked me that as well in December when she was poking and prodding my scars - did I notice any new lumps?  Well no... I never had any lumps to begin with... which has made me think.  

All of this talk of high possibility of recurrence with my disease, and other than being told there is no way to tell if it is recurring except by CT scan, I am routinely told to watch for recurrence.  HUNH??  So today I managed to stutter out my pre-meditated in-writing question to the Skin Doctor:  What exactly am I to be looking for?  Other than CT scan showing metastasis to an organ (liver, bone, lung, brain), what am I to be looking for?  Moles? new or old? Or lumps or bumps?  Cannot find a definitive answer online, so I mustered up the nerve to ask.  

The answer is: lumps and bumps.  With my type of skin cancer it is most likely that recurrence would present itself as spread to an internal organ.  If it did present itself on the surface of my skin it would most likely be near the original site of the mole excision(removal by surgery) on my hip, either on the scar or at one end of it.  

If it was to be a lump or bump, either near the scar or near an organ, it would be something palpable under the skin, not on the surface.    It would be unlikely that a new problem will occur on the surface, either in a new or an old mole elsewhere, or at least it would have the same likelihood of happening that way as it did in the first place.  

Sigh.  Okay, at least I have a definitive answer from a doctor horses's mouth.  There is such little information out there about invasive melanoma, I feel like I am trying to put a puzzle together with half the pieces missing.  I imagine I am not the only melanoma patient out there who feels that way!

Speaking of which, I don't usually pick up magazines at the doc's offices, especially on a day like today with my handy dandy new notebook I could play yahtzee on, but I happened to glance at the tiny table under which I was putting my slush-covered boots and there was a skinny booklet on top with the title: Canadian SKIN, The Official Publication of the Canadian Skin Patient Alliance.  

Canadian Skin Patient Alliance?  What the heck is that... and what the heck is a skin patient... oh wait - that sounds like me!?  I am a Skin Patient.  hehe that's new.

As I was flipping through said publication, I quickly discovered an article about a woman in BC living with melanoma.  I read the one page bio which lead to her website, and almost jumped up shouting hey that's me!! Wife mother melanoma warrior!  Right here people!

I may have mentioned previously how I have been disappointed with other websites, they are mainly about sunscreen sunscreen sunscreen.  Well thanks folks, where were you in the 70's when I was running around in my little red bikini all summer like every other baby was?  I want to find more helpful information, and I want to share it with others.  

  

And voila!  I found it:  Canadian Skin Patient Alliance  - and I have decided to copy and paste some information I want you to know about me, as I have heard these definitions from my doctors but have never seen it in writing like this nor am I able to adequately explain it to people when they ask.  Here goes:  

The information in this section has been gathered from existing peer-reviewed and other literature and has been reviewed by expert dermatologists on the CSPA Medical Advisory Board.

"Melanoma is a cancer that begins in the pigment-producing cells (melanocytes) of the skin. It is considered the least common yet the most serious of the three main types of skin cancer, which also include basal cell and squamous cell cancers.

Skin cancer results from cells that multiply out of control. As a result, tumours, lumps, or masses can sometimes form on normal skin, and can be either benign (non-cancerous) or malignant (cancerous). Some types of cancer are more likely than others to spread to other parts of the body and cause damage. This process is called metastasis. Melanoma is considered the most serious type of skin cancer as it may spread where it continues to grow and destroy tissue."

There are four types of melanoma, based on pathology from my surgery in May, my diagnosis is this: 

"Nodular melanoma (NM) accounts for 15 to 30 per cent of all cases. It most often appears in midlife, usually on the person’s trunk, head, or neck. The onset can be rapid, with NM often developing within several months. Unlike other types of melanoma, it is invasive from the onset and typically appears either as a uniform dark blue-black or bluish-red area, or as an area without any pigment."  (yep, mine was blue-black)

Also I want you to know: 

"The risk of developing a melanoma is greater if a person has a family history of skin cancer, has a lot of moles, or has fair or freckled skin, blue eyes and light-coloured or reddish hair. However, anyone who has had excessive sun exposure, severe and frequent sunburns during childhood, or has lived in a sunny or high-altitude climate is at increased risk of developing skin cancer.

Looking Deeper
Melanoma is caused by overexposure to ultraviolet (UV) radiation from either sunlight or tanning lamps. UV radiation damages genes that regulate cell growth and division. However, genetic predisposition and other factors also play a part. In fact, researchers have identified several genes linked to melanoma. A mutation in the BRAF gene occurs in many melanomas, but is not inherited. In inherited melanomas, changes in genes such as CDKN2A (p16) and CDK4 have been found. Researchers continue to explore ways to treat melanoma based on these new genetic findings."

Melanoma is a disease in which malignant (cancer) cells form in the skin cells called melanocytes (cells that color the skin).

Wow... I'm out of breath, I have skimmed over a wealth of information in these two websites this evening and I have lots to keep me busy reading more!  Linking to the Skin Warrior in BC website, "save your skin foundation"  www.saveyourskin.ca I have found possibility of more support, and new information about my journey.  Check it out if you wish, I will likely yammer on about it more in the near future.  :-)  Especially because I just found the name of my very own stylish-boot wearing medical oncologist from Sunnybrook/Odette listed on the Medical Advisory Committee for this foundation!  Rah Rah I'm excited to get in touch with this group - will keep you posted!

Speaking of keeping you posted, I have yet to tell you about point "1)" of this post, which occurred after the magazine theft but is equally important.  I have a new ouchie... one of the moles causing me concern was removed from the party this aft, poof right there in the Dermatologists office no nurse assisting no nothing.  I had not experienced such a thing, all of my procedures prior have been done at surgeon's office or hospital.  

Local anesthetic was injected and in the blink of an eye my mole was shaved off, placed in a specimen jar full of solution ready to be sent off for analysis, and I have an open wound that is stingy and achy tonight.  It is on my left wrist. No stitches, so the girls were pretty puffed up about the fact that they had stitches for theirs last week and I did not...measly ole' mole removal I had HA!  They're so funny...ha ha HA.  

They did the dishes as I can't get it wet.  So there kids! ;-)

Great news about the girls as well, we got the all clear on their mole excisions from last week yahoo!! I don't have the written report in my hand yet but I will.  Bottom line the pathology confirms their moles are benign, normal, no cancer.  Yah girls!!!! 

We will all continue to watch our skin health, and our lumps and bumps, as I always encourage my family, friends, and acquaintances to do as well.  Check your moles please - I assure you the threat of quarterly visits to the Skin Boss should be motivation enough to stay on top of it.  Ask your family doctor about any spots you may have and they refer you further if they have concern.  

I will also continue to quietly mourn my days of care-free skin love.  I was always fortunate to have sensitive but beautiful skin for which I often received compliments.  It was always one of my favourite features, and I miss it so.  I valued my golden complexion and never suspected it was up to nasty tricks.  Causes me paranoia and self-doubt now, likely more so than any of my other organs.  But... I will continue this journey and see where my skin and I end up. 

Radioactive Iodine Treatment, Part 1

I have google researched this treatment, and all of the information online is vague, or conflicting.  I think there may be slight variances in Canadian and US treatment procedures, and/or different hospitals or regions handle it differently.  I now have the paperwork from my very own Endocrinologist in hand and want to put it out there what is involved in radioactive iodine treatment at Sunnybrook in Toronto Ontario Canada, in 2015.  

Due to the risk of radiation exposure to my young female offspring, I have chosen to be admitted (committed??) to the hospital for the first three days of my treatment.  This will be in March, the Monday-Wednesday after March Break.  I will be permitted to go home after that, but still have to keep my hands to myself and my dishes, laundry, bed, and bathroom solely for my use for one week after (yahoo for my master suite already in the basement).  Not as bad as the original one month isolation period I was first told!  

Also it specifies I must not use disposable cups plates or cutlery, or paper towels etc, I must use and wash my own towels and dishes separately from everybody else.  Must wear slippers/shoes when out of bed, and have to flush three times after every visit to the toity. Glad my first three days will be at the hospital so I don't have all that flushing on my good ole' Meaford water bill!!

Some of this stuff I will copy directly from the wad of paperwork I was given to read, highlights include:

• the purpose of radioactive iodine treatment is to destroy any remaining thyroid tissue following surgery
• it will be a capsule I will have to take with water, then drink a tonne of water/fluids for the following days and weeks
• radioactive iodine emits two types of radiation called "beta particles" and "gamma rays"
• the beta particles irradiate and destroy the thyroid and/or thyroid cancer tissue, but travel only a few millimetres in tissue
• gamma rays travel a much greater distance and can be used to image the distribution of radioactive iodine in the body
• thyroid tissue takes up a small part of the radioactive iodine, but the majority is cleared from the body in the normal ways we expel things... saliva, perspiration, bathroom. The amount of radioactivity in the body decreases gradually over a period of weeks, both through excretion and through natural decay of radioactive material
• I loved science classes in high school!  And I remember a presentation we had at an assembly in the gym where some animated presenter came to teach us about radiation.  We learned about Chernobyl, but also I seem to specifically remember him emphasizing that we are exposed to radiation in our everyday lives, not just from the microwave but through simple things like asphalt
• the Canadian government mandates strict radiation safety precautions to ensure that members of the public are not exposed to significant amounts of radiation. In the case of this treatment radiation exposure to others can occur through two pathways 1) "contamination" via bodily fluids or 2) direct exposure to gamma rays emitted from the body. I can totally see myself with light beams shining out of my fingertips!
• there are some restrictions I must observe in order to optimize the safety and effectiveness of this treatment, including but not limited to: no CT scan (with the injected contrast dye I always have) within six weeks of treatment (phew last weeks' CT scan scraped by with a 7.5 week distance to treatment). Also to be noted the instructions specify that "female patients must refrain from initiating a pregnancy for 6-12 months after treatment" !?! Men 3-6 months, just for the record.  LOL No worries on this one, I am pretty much against initiating a pregnancy for the rest of my life anyway!

There is a specific list of things I have to do to prepare for the treatment.  My medication for thyroid hormone replacement has already been changed several times since surgery, but now I am on one specifically until two weeks prior to the radioactive iodine treatment, apparently it has a shorter half-life in the body therefore is more easily stopped (inside the body) prior to treatment.  

I will also have to be on a "Low Iodine Diet" for two weeks prior to treatment, to make my thyroid tissue starving so it jumps all over the radioactive iodine bait capsule on treatment day.  Laymans terms. 

No salt, no dairy/products, no eggs, commercially prepared food, chocolate, soy products, foods containing FD&C red dye #3, or anything else that could contain iodine.  No problem, I am about due for a cleanse anyway - green smoothies and celery with almond butter it is! Ideally this could occur on some tropical resort juice cleanse yoga vacation?  But I digress..... 

I have to go to Sunnybrook for bloodwork on the Friday before, to ensure that I am appropriately hypothyroid.

After the treatment I will resume with a double dose of thyroid hormone replacement meds and be back to my no coffee for an hour after taking this pill first thing every day for the rest of my life.  If this sounds confusing, believe me you are not alone, I get so frustrated with the medication stuff, I just don't get it.  No wonder pharmacists make so much money!

On the day of treatment I will be admitted to a private room, from which I will not be permitted to stray until I am discharged on the Wednesday.  I can bring new baby laptop, stuff to read, toiletries, bathrobe and slippers, bottled water and favourite drinks (and you may be as happy as I am to know that beer, wine, and spirits ARE permitted on the low iodine diet hehe! It says so right on the brochure - now I am just scouring the hospital handbook to see if there is any rule against me sneaking some in in my suitcase - it DOES say bring your favourite beverages! And drink lots of them too)  ;-)

The Nuclear Medicine Physician will explain everything that day, get my signed consent form, and administer the glow-worm capsule.   The stuff is tolerated well apparently so I shouldn't be physically ill from it - other than the risk of getting cancer from it we're good to go.  I assured the Endocrinologist I am not too worried about getting another case of cancer, it's sort of with me for life now anyway.  He must have felt like an ass having to explain that to me right after our conversation about melanoma. It was definitely an uncomfortable moment to be remembered in my myriad of medical moments. *sigh*

One week later, back to Sunnybrook I will go for a full body scan in Nuclear Medicine (I already know where that is in Sunnybrook as I pass it all the time by the tunnel) to determine the level of radioactivity and/or radioactive tissue left in my body.  This will determine whether or not the treatment will have to be repeated, I do have one friend of a friend who has had this treatment every year since her diagnosis.  My oncologist says this is like a bone scan?  But I have not yet had that either so this will be a new medical test to add to my repertoire.  Let me know if you have had this done, maybe give me a more concrete heads up than google will?

Okay well I think that's it for notable information I have been given about my upcoming radioactive iodine treatment.  Any questions let me know... there is likely stuff I am missing, but I am getting reasonably good at going with the flow of doctors springing stuff on me.  Part of the territory - I'm not complaining... just glad I am getting it all in writing. LOL

Article © Natalie Richardson 2015

Little things

Wow another week gone, how is it that I think(say) that every week and still seem to not have found the cure for it?  Last Christmas a long-time friend of mine said "duh Nat you should just be used to that by now?" LOL  But I am not.  Maybe it is my inner over-achiever, or my fast-paced family who lovingly drag me along with them?  I could even blame it on chemo brain at this point in my life, but wow time flies.  Was going to use my fave saying time flies when you're having fun, but I must admit I am having as much fun as I am not.  It is all about balance you know!

This weekend I got a new toy.  All for me and my future writing aspirations - and my personal sanity level - I got a notebook tablet thingy woot woot!  Laptop is going to die any day plus my family of five (okay well three plus two halves?) needs more 'puter time than we each get, so I took the plunge into Windows 8.1 and a touchscreen yah baby new love of my life.  ;-)  

I can play with it as much as I want, and can take it to Toronto with me without disrupting everyone at home, and it does everything except the banking.  And well, folding the laundry.  The family can fold the laundry while I chill in the big city with my touchscreen yah!  haha just kidding... truth be told a main selling feature for this particular tech device is that it came with a free year (accidentally two years YAH) of MS Office, and the girls need PowerPoint often for school projects.  So now we have said convenient device and it will (has already) make our lives (my life) a teeny bit easier. 

I have a few blog posts planned that I am behind on, specifically details about the radioactive iodine treatment I am to receive in March, but in the meantime I wanted to quick update you on my thoughts on convenience.  Hence the personal notebook: every little bit of convenience helps.  

While living with cancer I have observed a shift in my thinking, or at least I can see a shift tries to happen every now and then, but of course I fight it every step of the way.  I seem to do everything the hard way. Always have, of course.  I have been called stubborn a time or two, and I recognize in myself that I am not truly satisfied with my situation, whatever the case may be, unless I have butchered the damned thing with every ounce of energy I have.  I try and I try and I try and I may end up exhausted but once I get to the end result I was seeking in the first place?  Happy camper.  Quiet, not crabby, content person/woman/mother/wife/whatever ready to tackle the next tough job.  

This week I fixed a little problem which I have been resisting for months - resisting the fix, not the problem.  There are some quirky symptoms or side-effects of my disease that I don't always share.  I discuss most of this stuff openly, and most are simple, not life-threatening problems. Some however, are small problems but cumulatively are a threat to my future.  

One in particular, I will reserve the details of, but I can say it is uncomfortable physically.  Again, on its own it may not be too bad, but long-term it could be a problem.  And short term?  Well it's a royal pain in the ass.  I go out places or see people and they say "you look great!" - meanwhile I very deeply understand and privately empathize with the people I have read about or have cancer in common with: there are some things you just can't explain, but they are very limiting to your daily lifestyle.  

Nose bleeds for example; say I had nosebleeds several times per day, at random times, unexpected, no clue to any pattern or relation to any personal habits or diet etc, but nosebleeds nonetheless. When they first started happening it was just one or two per day or every other day, but now it has become a several box of tissues per week problem. They are not life-threatening (typically), can be cured with a simple rest and a tissue, but could be seriously disrupting to the daily schedule.  

Imagine being on cash on a busy Saturday afternoon at my favourite grocery store, or trying to conduct a professional presentation at a conference, or doing your banking, or walking down the street, or visiting a friend over tea, and poof!  Nosebleed.  Quickly remedied perhaps, a bit embarrassing, those in the room understand, maybe not too bad once in a while... but several times, every day?  Having to excuse yourself and grab the tissues and wait for it to pass?  Risk staining my clothes?  Look funny, feel gross?  Not to mention what kind of nutritional deficiencies those nosebleeds could be causing on a prolonged basis?

Yikes, I'd rather stay home.

I do not have nosebleeds everyday, I am not writing this piece to cause any panic, but my physical symptoms are comparable to that.  Irritating, embarrassing, not a huge deal in the big picture but enough to show me that I am at the mercy of whatever path this is that I am on.  My journey now includes "nosebleeds" lets say, and I have to learn to deal with it.  The fact that I don't WANT to deal with nosebleeds is aside, and out of my control.

The cure for "nosebleeds" has been in front of me for a few months, but I have refused it as I am already participating in half a pharmacy worth of experiments so my greeny-nature and stubborn anti-pharma personality has chosen the hard way: live with the nosebleeds.   

Here's where the shift in thinking occurs... this week I finally grew frustrated and weak from the nosebleeds and took the medicine for it. Grumbled, swore it wouldn't work, but took it.  And it wasn't until I realised I wasn't having the "nosebleeds" that I realised my life was that teeny bit more like it was before.  Before the cancer diagnosis and the body-altering big-company chemical treatments.  That small convenience was back - yay no nosebleeds.  Or far fewer at least.  Have to take the medicine yes, but maybe that's not a bad tradeoff for having one less symptom to complain (or run and hide) about.  

The part that troubles me most is that I didn't realize I was as upset and inconvenienced about the "nosebleeds" as I really was. It wasn't until they stopped, that I stopped in my stubborn tracks and said hey... when did I become okay with all these nosebleeds I was having?

How many months have gone by when I thought I was fine with all of this and staying true to who I am, or who I was... but then change one thing back to "normal" and presto!  I can see clearly that my daily routine is altered.  My daily life is altered.  Perhaps forever, and my fears of not being able to repair that are haunted by stupid little cumulative things such as nosebleeds.  I am a different person already, and that is what I am trying to avoid.  I don't want to be a cancer person... I was fine with who I was before! 

Cancer seems to be such a mind game.  Its a head trip that takes 100% effort to control.  And I am clear that it isn't necessarily effort that wins it, certainly countless have put their best into this fight and have lost.  So how do I be sure to come out on top?  

Trust my gut on the little things, take the conveniences when I can, appreciate the help that is given to me, and above all try to stay focused on not letting the nosebleeds in life get the better of me.  Or make sure I recognize the nosebleeds for what they are and keep them in check, regardless of how I may have dealt with them before.  Haven't had nosebleeds like this before!?!

Feel like I can't let my guard down.  Ever.  Phew that's a tall order - no wonder time flies so fast.  

Article © Natalie Richardson 2015

Quiet contemplation

There is something to be said for some peace and quiet.  I love my busy noisy life, but I seriously need down time on a regular basis to re-charge.  I love my solitude, perhaps from my quiet childhood I learned to enjoy my own company.  I rarely feel lonely or bored, and I do like that about myself.  

I have had the last day to quietly go about my tasks in privacy, though I am hugely grateful for the offers from my loved ones to accompany me, drive me, visit etc, I am also grateful that I can still do this stuff on my own.  I spend a decent amount of my fear on the prospective loss of independence in my future.

I enjoyed the sunny drive to the city in my spiffy little car yesterday, and I felt comfortable checking myself in to the chemotherapy unit at Sunnybrook and reading a book in the lounge chair I scooped.  I quietly sipped away on my couple litres of water (have to be very hydrated to receive and recover from any type of chemo or immunotherapy) and observed the familiar scene.

I recognized some fellow patients from previous visits to Odette, the elderly gentleman with stage 4 melanoma (who didn't recognize me though we have spoken a couple of times), and the Greek lady who recovered from breast cancer only to get a painful form of bone cancer.  My Mom chatted her up on one of our visits so she would totally have snagged her for a chat (and her spanakopita recipe) had she been with me yesterday. 

The nurses are very helpful and with a few of them I am on a first-name basis, they commented on how it has been a while since I was here?  I filled them in on how busy I have been since October with my thyroid surgery etc, and they just shook their heads.  They must see all kinds of medical cases there, they are special people to work in that field. 

All settled into my IV chair, it was monumental to me that I was able to make it to the chemo recliner for the fifth of my eight allotted treatments, after so narrowly missing being forced to opt out of the trial.  

I was warmly greeted by the other patients in my room, and we had some chance for small talk between nurse Amy darting around hooking us all up.  I amused myself by noticing that I could see my car in the parking lot from my window, and it occurred to me that I could take some photos to share with you a bit of how it is inside the chemo unit.  It is peaceful inside, and the windows are mirrored on the outside of Odette Cancer Centre so no one can see in, but I can see my Honda! 

Can you see my car there..?  -------------->

Its the little black thingy right under the pink star on the window LOL  It's not a great photo but I couldn't get up from under my nice warm blanket with my apple juice. ;-)

Here are my feet under the warm blankie, showing what each chemo chair looks like, I was in #2 yesterday, but this gives you an idea.  Normal hospital stuff. 

 

Oh yes, and this is my $30 000  per dose chemical shot.  

That tiny brown bag up there?  That's my melanoma's worst enemy.

The infusion went well as expected, vital signs during treatment and for an hour afterward were all good, I can't believe how comfortable I feel with the whole process, it's a strange feeling but hey, gotta go with it I guess, it is part of my experience.  One foot in front of the other.

I remember the characteristics of each treatment visit (and no, no celebrities this time, as the girls asked me on the phone last night LOL), and I remember being the new one still figuring out the rhythm of the chemo unit.  

Yesterday an elderly lady was in for her second treatment of chemotherapy, and I recognised her vaguely-mystified look about some of the goings on.  I felt badly for her, as she seemed to have a bit of a language barrier as well, and she looked like she was ready to receive her treatment but really maybe didn't want to be there at all.  Thankfully she had her son with her, he was attentive and obviously experienced in the medical field.  We had some opportunity to chat and it was a nice way to pass the time, sharing stories and exchanging tidbits of helpful information.  

Yesterday I met people from north of Peterborough, who stayed with their son in the city when here for Dad's treatments, and the lady across from me, accompanied by her sister and brother, were all from Toronto.  Plus my neighbour with the son, who travels all around Ontario for work, but is based here in the city.  Neat to hear everyone's stories, cancer-related and otherwise.  And there is always a warm farewell to each other as we are discharged one by one from our recliners... everyone seems to say "Take Care" in the most sincere way.  We're all in it together. 

I was super zonked and crashed early with my habitually sore post-IV infusion arm, large bruise on my hand this time also - oops Amy!  Up this morning and yummy coffee and breakfast, now getting ready to head over for my three-month CT scan.  I hope they are on time today, it can be a gamble.  

I have embraced my quiet time and I am not really ready to let it go just yet, but I must.  I have to will myself to pack my bag and move along to my next appointment.  I feel relaxed, and I have just been willing my cells to behave themselves and not show anything bad on the CT scan today.  This is my fourth CT scan, and I will have results later this week.

OK off I go. Quietly and anonymously, I will be able to finish my book today as I drink the vile CT scan stuff and pretend it's a big-ass mojito.

Took My Kids to Work Day

Living with advanced cancer is a full time job.  

These days I am thankful for my project management training, and for my general ability to multitask, because this job is the most demanding I have ever had.  I do not know how people without all of the benefits that I have are able to do this - the running/driving, the reading and detective work, the juggling appointments, the parenting/family/house stuff, trying to remain sane (at least outwardly), the costs associated with the whole thing, oh right and supposed to be resting and sleeping well in between?! wowee I am grateful to be an employed Canadian with a decent head on my shoulders and an amazing support system of family and friends.

Claire and Cass and I ripped down to Toronto yesterday, to finally meet the Endocrinologist.  What an exhausting day - worth it, but exhausting.  We just hhhaaad to stop at the Works burger restaurant in Barrie on the way home to try out those bacon and peanut butter burgers Crystal and I discovered in the fall. :-)  It was a hit, the girls loved it and we all came home stuffed. We had earned the celebratory feast, lots of power-walking around Sunnybrook yesterday, and good news to boot. 

I was able to ascertain that there are no (known) contraindications with the Ipilimumab treatment for Melanoma and the radioactive iodine therapy I will receive for Thyroid Cancer.  Which means.... I am going back to Sunnybrook on Monday Jan. 26 for my regularly scheduled Pacman treatment (YAY!), and I will be given my iodine radiation in March (I will post a separate blog about that therapy as it is a lot to absorb).

(Funny how I just said "YAY" to receiving a dose of a crazy drug in addition to another crazy chemical treatment and all the crazy invasive procedures on my body... everything is relative I guess, but if a year ago you had told me that I would one day be happy to receive stuff like that? I would have called you crazy. Maybe I'm losing it after all!?!?!)

The Endocrinologists (we met two of them, interesting dudes to say the least) answered the majority of my questions, and though I did not get quite all of the details I was hoping for (Mom did tell me to park my chair in front of the door so they couldn't leave until I was happy), I do now have the basics covered and a raft of new paperwork and appointments in my cancer portfolio.  

Most time-consuming part of the Endocrinology visit was finding the Dr.'s office. LOL That was my first time in the H wing of Sunnybrook, holy crap that place is huge.  I've been to M, A, B, D, T, and now H, though T wing (Odette Cancer Centre) still feels the most comfortable.  The girls sure got to see the whole thing, as we came in through the Main entrance and traveled the tunnels as well as the glass elevators. 

After Endocrinology we went to meet with my medical oncologist regarding the clinical trial dilemma and schedule.  She reviewed everything I got from the Endo dude and was happy that he had approved my continued participation in the trial for my saving-hope Pacmen. 

The girls were happy to meet my oncologist and couldn't help but compliment her on her fancy boots - from a fashion perspective alone the meeting was deemed a success by my biggest fans. I had my bloodwork and physical exam for the week 24 portion of my trial duties, and then we planned for the coming months.  On Monday I will have my treatment, and then Tuesday I will have my routine CT scan.  

Luckily the CT scan is a shade more than six weeks prior to the radioactive iodine treatment or else that would have changed the schedule yet again. Phew are you confused yet?  I am glad I am documenting all of this so that if I forget anything I can turn my chemo brain to my blog and remind myself!  I have updated the "Upcoming Appts." thingy to the right side of the screen too, you can see the majority of my plans through until the end of April.  Sorry Bill, I won't be back to work any time soon. :-(   

So that is my briefing on yesterday's events,  I am resting for the majority of today, feel very tired, the red nap-time sign is on the door.  Nerves are a bit high here at home in anxiety for tomorrow as well: Claire and Cass have their moles removed at Ambulatory Care in Collingwood Hospital.  Hopefully the pathology from their mole excisions will give us helpful information as to their genetic disposition for Melanoma.  

I will keep you posted... in the meantime please send good vibes to the girls around 10-11 tomorrow a.m.  I'll let you know if they end up going to school afterwards to show off their stitches?  Either way I imagine the whole thing will cost me an ice cream lunch or something equally soothing to the shattered nerves.  

I couldn't have gotten through yesterday without my daughters being with me, they are so very much my inspiration, my life raft, my teddy bear, my kick in the ass, my comic relief; the three of us just hold on tight and keep going forward.  It's all we can do.  I will refer to yesterday as "Take your kids to work day" LOL as it definitely was that! They were fully immersed in the experience, and we all sweated it out and got the job done.

Gilda's Club

The girls and I had a little adventure today, a much-needed step outside of our comfort zone and into an environment that promises warmth, friendship, and support, as we travel our "cancer journey" together.  I have been wanting to check out Gilda's Club since I heard of it during my first visit to RVH in Barrie in the spring, and finally today we made it.

Gilda’s Club grew from the dream of Gilda Radner, the comedian best known for her work on television’s Saturday Night Live. As she navigated her own journey with cancer, Gilda reclaimed her gift of laughter, learned new strategies for living with cancer and gained a feeling of control when she joined with others who also had cancer. Her vision was to create a community of hope and inspiration for people with cancer and their families and friends that would be free-of-charge.

Apparently there are only two Gilda's Clubs in Canada as of yet, one in Toronto, and wowee... one in Barrie.  :-)

Today they had a new member meeting, so we had a full tour and met staff, a volunteer, and some members.  During the orientation we were welcomed to use all of the facilities, which include a yoga room, a teen room complete with books, electronics/TV, and a piano keyboard! There is a fully equipped huge art room with tables covered in paper just ready to be created upon.  

Several washrooms including one with a gorgeous shower designed for wheelchair use, and quiet lounges with comfy couches and tranquil decor, a huge community room which is like a grand beautiful bright living room, with an open concept commercial-style kitchen and dining area, fully stocked with coffee, teas, treats, and supplies/tools for cooking any friendly feast.  It's really gorgeous.

While I attended the meeting Claire and Cass had a ball in the art room exploring and relaxing. I was so happy they loved the place too, we were all a bit nervous walking in, but as soon as we were greeted by the staff we felt right at home. I got all emotional of course, I felt there was some significance to our being there.  

I am incredibly grateful for the loving support we have from family, friends, and our community, everyone is amazing, we really lack nothing.  But this place offers a little something we can't get at home, and that's an environment in which cancer isn't such a marvel or a mystery.  At Gilda's Club you can talk about it, or you don't have to.  Everyone who is there is there because they are touched by cancer, whether they are diagnosed themselves or are family members of a cancer patient, they are there to connect. It goes unsaid. 

My main priority throughout this journey is my health of course, but also that of my daughters.  They are my life, my inspiration. I want them to be okay.  They follow my lead on pretty much everything in their lives, they always have, as we have been through many ups and downs.  I feel that with Gilda's Club I can offer them a source of support that they may rely on now and in the future.  We can go there together and it be our place to learn, grow, connect, experience our cancer-related situation, and/or just plain meet people who are in the same boat as us.  

There are many programs and activities, a full calendar of events we can sign up for and enjoy; there are "Teen Scene" events and "date night" and cooking and yoga and art classes as well as support groups for various cancer stuffs. I am looking forward to meeting people or finding out more about my disease, as every case is so unique.  

It is not a medical facility or a residential Lodge-type building, but it is coordinated by the social-work side of cancer support.  I felt a weight lift off my shoulders just walking through the door of the place. 

I took a few photos, though the girls wouldn't let me post ones of them in the pic. LOL 

 Art Room:

 

 Teen Room:

 From their website:  

"The cancer support community at Gilda’s Club is here for you and for everyone in your life, from the moment the doctor confirms the diagnosis of cancer, through the entire journey, whatever the outcome.

Our mission is to ensure that all people impacted by any cancer are empowered by knowledge, strengthened by action, and sustained by community. Because no cancer care plan is complete without emotional and social support, our innovative programs of  networking and support groups, education workshops and social activities are provided free of charge."

One of Claire's Paintings:

 

Thought I would take a moment to explain my involvement with the Royal Victoria Regional Health Centre in Barrie, to which I usually refer in my blog as "RVH, Barrie."  Why do I go there as well as Sunnybrook?  Well.. it is because, thankfully, I was referred to both when I was first diagnosed with invasive melanoma.  

Because my family doctor is in Clarksburg, and she gave me the option of Owen Sound or Collingwood for my first mole surgery, and I chose Collingwood, all of my care has been routed in that direction.  Owen Sound patients usually go toward London's Cancer Centre, Collingwood goes toward the Big Smoke.  

I was referred to both RVH and Sunnybrook.  I have a file with a Radiation Oncologist and a Medical Oncologist at the Cancer Centre at RVH, which qualifies me for social work support and additional therapy offered at that centre.  Because my melanoma is so advanced I was also referred to Sunnybrook last April, as there are some things that RVH just can't offer.  I had a built-in "second opinion team" right from the get-go, and they have definitely served as such, to my benefit.  

Sunnybrook and RVH do work together in some cases, and provide local care when possible.  I could have had my immunotherapy at RVH had I not opted for the clinical trial offered only at Sunnybrook, and had I had radiation therapy for my melanoma post-op, I would have had the option to have it at Sunnybrook or closer to home in Barrie.  

I love the city of Barrie, have spent a decent amount of time there in the past ten years, it is my go-to "city" when the girls or I need a mall fix or a rock concert.  When we moved back to Meaford almost ten years ago, it almost didn't happen as we were apartment-hunting in Barrie.  Funny how things work out, I wouldn't change my move to Meaford, but I am also very comfortable travelling around Barrie and I think it will be a happy medium country-city for the girls as they grow.  We hope to build on our many fond memories there, and I feel that Gilda's Club will be an integral part of that. 

There is no pressure to go there nor any type of special commitment required, we can just go there when we feel like it.  If I am feeling up to a trip or feel up to fitting it in between medical appointments, I can go there for additional support. Or the girls can go there while I am at an appointment at RVH (it's right beside).   

It is tough finding emotional/psychological support in the cancer field around here; CCAC provides some support but it is limited, so I feel it is important to reach out to all avenues possible.  Thank you RVH for your social work, and for the referral to Gilda's Club!

Article & Photos © Natalie Richardson 2015