Week 12

So this is week 12 of my clinical trial participation, meaning week one began Aug 11, 2014, when I received my first Pacman treatment. A clinical trial is regulated and has a particular schedule, in my case it includes prescribed treatment times, plus bloodwork and imaging tests at certain points.  

On Monday I had my third CT scan, at Sunnybrook, after giving 23 vials of blood(!) measuring everything from liver function, white blood cell count, thyroid function (which is still fine despite the upcoming surgery - my thyroid doesn't seem stressed at all!?), hemoglobin, pregnancy (HAHA) and whatever other stuff they check for.  Some of these samples will make their final home in the research database place in Chicago.  I get to sit with the lab technicians extra long with my apple juice on those days as it is a lot of blood to lose.  I have learned to have a good breakfast on those days, and to drink at least 1.5 litres of water on the way to the hospital - which I have plenty of time to do when I leave Meaford at 5am.

This trip went pretty smoothly, and the day ended with some good laughs. My buddy from Gravenhurst met me in Barrie at 6:15am, and we weaved our way through an alternate route as the 400-401E was closed due to a truck fire, and made it in time for bloodwork at 8:45 (yes, she's a rock star driver!).  Then off to CT to drink the toxic glow-worm water stuff for an hour and a half, then sit in my lovely gown for an hour waiting for the delayed scan. Somehow we managed to giggle our way through it and time passed pretty quickly.  Amazing how much chatting and catching up two friends can do without their children there to sweetly (constantly) interrupt. No offense kiddos!

After lunch in the yummy caf in the Odette Cancer Centre, we headed upstairs to wait for 3pm appt with my medical oncologist.  She was quite delayed so we amused ourselves people-watching. I am amazed at how many people - patients in addition to staff - that I am recognizing on trips to the hospital, it is a small world, really. I guess we are repeat offenders all on our own coincidental schedules!

Oncologist meeting went well, even though she was almost two hours behind she still gave me time for my exam and questions, not rushed or frazzled, just as caring as always.  We went through my routine exam, lymph nodes poked and personal questions answered.  Nice little bonus she already had part of my CT scan results from that day! 

I am happy to report that my liver is still okay.  We have been watching a couple of "small uncharacterized lesions" on my liver, and YAY I get a three-month pass - so far so good on that organ at least!  Next CT scan is in January, so no further news is good news.  

Still no thyroid surgery date, but I will post as soon as I get it.  I really expect to hear this week but hey! The suspense is thrilling. 

Outta there around 5pm and we barreled up the 400 straight to downtown Barrie to scope out a burger joint we found online that serves crazy burgers such as the "Sk8tr Boi" which has a beautiful delicious GOB of peanut butter on it, in addition to cheese and bacon. Yah baby - I HIGHLY recommend it. Have a new fave burger topping (hey gotta enjoy my liver health while I have it!!?) :-) 

Crystal and I parted ways at the Timmies where my car had sat for the day, and I got home shortly after 9pm, exhausted but happy.  Thanks Crys, for being part of my posse.  xoxo

Another small update - yesterday I finally went for my first massage therapy treatment for the lymphedema in my leg. Went well and was very informative, will update more on that later after I see the specialist for my leg.

OK... halfway through week 12, deal with the post-CT tummy trouble and general fatigue/exhaustion... plus carve pumpkins and proceed with Halloween and we'll be at "Lucky" 13!  ;-) 

Luck - or Lack Thereof?

I am not a superstitious person. I have always wanted to not believe that the mirrors I have broken or the spilled salt I didn't throw over my left shoulder have any effect on my everyday life or future.  I do not believe in "luck," and I cringe every time I cheerfully say to someone "Good Luck!" or sarcastically refer to "Luck not being on my side."  My all-time favourite quote is from a wise old friend: "Luck = When Preparation and Opportunity Meet"  That IS all it is, in my opinion! 

Yesterday I was again faced with the term "Bad Luck." Referring to: Me.  This coming from an intelligent person I would not have suspected would subscribe to the luck thing... my head and neck surgical oncologist/microvascular reconstructive surgeon.  Near the end of our consultation yesterday, I asked my new surgeon if he could confirm if there is any link with my thyroid cancer to the melanoma, and he said no... studies show there may be a link through a particular gene in a melanoma patient, but this one appears to be just plain l-u-c-k.  I wanted to laugh but I managed to choke it down. 

So yes, we met with the head and neck surgeon, and he explained a little more of what is going on with my diagnosis. He used a lighted video scope thingy to check out my vocal cords (I'll spare you the gory details of how that happened, and will remain thankful that this portion of my battle with cancer will be from the neck up!)  My vocal cords appear to be mainly unaffected by the "classic" tumour spread, and the Dr. said that there is only a 10% chance that my voice would be affected during surgery, and that would simply mean I may not be able to hit that high note singing in the shower.  Scott assured him that my family would be okay with that. 

Special mention though, of the nerves closest to my jugular, they are more closely affected by the infected lymph nodes that will be carefully removed.  I will be having a full thyroidectomy, a central node dissection, and a right node dissection.  Thyroid gone, and all nodes from just below my right ear across and down into just under my collarbone to the middle and right.  Hopefully it will be just one small-ish incision across my throat, minimal scarring on my "young skin" - HE said that I swear!! :-)

The surgeon himself performed an ultrasound right in the consult, which was awesome as he was explaining in detail to a student surgeon, and Scott, while he was looking around on my throat and neck, so he got a better feel for mapping the surgery and we got an earful of a bunch of terms I wish I could have written down at the time.  I was particularly proud of myself when I could tell him exactly which node had been biopsied - I was painfully aware of it for a couple of weeks after the biopsy, as were many of you who had to suffer my bitching about the ouchie and visible bruising a few weeks ago... oh wait, I guess I am still whining about it?

The surgery will be scheduled for approximately mid-November, as my medical oncologist wants to wait one month from my last treatment before subjecting my system to general anesthetic etc. If all goes according to plan, I should be able to remain in the clinical trial. They are working together to ensure my safety, well-being, and continued strategy to fight melanoma. 

The new surgeon said his job is to make thyroid cancer the least of my worries.  It was very matter-of-fact and reassuring how he said it.  Hopefully iodine radiation treatment will not be needed after surgery, but we will cross that bridge if we come to it. 

Surgery will be at Sunnybrook, all procedures the same as my operation in May, except without the post-surgical eight-week mandatory jail time oops I mean bedrest with leg elevated. Sounds like it will be one night in the Short Stay Unit in the main building again, barring any complications, then home to be pampered with ice cream and soothing foot massages.Two weeks worth at least.....

So now we wait for surgery date and pre-surgical prep clinic date. Brain MRI date - news flash - just got MRI date: Nov 7.  CT scan is Monday Oct. 27, which is week 12 of trial schedule, and is paired with bloodwork and another conversation with medical oncologist.  I will keep you posted, and my fingers crossed. ;-)

A Buzz in the Chemo Unit

Well we managed to smash our goals yesterday: long day, but made it through, and saw everybody we needed to see at Sunnybrook - and in record time!  All pokes, prods, and conversations done and we were on the road home by 4pm.  The day went quickly but was very productive.

Yesterday was my fourth (already!?) infusion of the melanoma treatment drug, the last of four treatments three weeks apart, so now a break on melanoma treatment until January 19th, for the first of four more treatments, three months apart. We met with the Head & Neck Surgeon yesterday as well, but I will post about that in a subsequent entry - first I need to tell about the excitement!

There was certainly an undertone of awe and busy-bees in the Odette Chemotherapy Unit like I have not before experienced. The chemo rooms are like small hospital wards, but with just four beds or recliner chairs per room, open concept but arranged for privacy as well, and each have big windows overlooking the Sunnybrook entrance and parking lots and lots of trees, though the windows are mirrored on the outside for interior comfort.  

Each room and chair within is numbered, and patients are assigned to their chairs as their medications are ready; they are arranged in no particular order from what I can see, except for patients needing beds vs. those able to sit up-ish in recliners. It is always a mix of patients receiving treatments for various types of cancer and with various IV treatments.  Coincidentally yesterday was the first time I met a fellow melanoma patient, it was interesting to share stories. 

There is always one nurse assigned per room, and she or he is assigned to start, monitor, administer and end her wards' treatments, with an extra nurse or two floating between units to cover breaks and malfunctioning beepy unit things and get extra blankets and help us all through our tasks. Yesterday my nurse was a horse-hobbyist semi-retired chemo nurse veteran with a needle touch like air, and she called me "Love." Very nice.  

Now being an "old hand" at this chemotherapy unit stuff, I was calmly experiencing my treatment day as any other (funny how humans adapt to their circumstances, I know this story may sound a little strange to be excited about, but it's all I've got right now - work with me LOL)   ...Scott was peacefully perusing a magazine by my side, I was reclined, cozy under pre-warmed blanket, sipping my apple juice, one other lady quietly snoozing through her treatment, when in through the door walked a busy-looking leather boots to the knees business woman that made me do a double-take.  I was a bit star-struck - I turned googly-eyed to Scott mentally saying holy crap do you know who that is? and looked back, being ever so subtle, thinking naawww... too much saline, Nat, it can't be.  

She was getting settled in the chair beside me, the nurses explaining that she had to stay for her treatment for four hours - a slow drip this time instead of her "to-go" usual where she removes her own IV etc after finishing her treatment at home. You can't help but overhear this stuff, the rooms are cozy and information sort of freely passes... we are all comrades in the same boat. 

Then she spoke.  If I wasn't sure when I first saw her, I was almost sure now! Unmistakeable voice, and I was discreetly googling the television show I believed her to be the co-host of.  I showed Scott my phone screen pics of her, and because he had a more direct view of her, he could surreptitiously sneak peeks to see if the images matched (though I'm pretty sure he wasn't as excited as me - he doesn't get to watch much morning TV in his line of work hehe! tho he listens to CBC radio he couldn't really help me on this one). 

Back to the buzzing... the nurses were pretty calm, the one that did my room mate's IV didn't seem to know who her patient was, and the other nurses kept a cool tool, but the hallway seemed to be twittering. Then one of the little (elderly) volunteers came in, smiled at me then turned to my neighbour and asked her if she "would like some juice or soup and was she the one on TV yes?"  It was so cute!  She confirmed yes... and he quietly scuttled back into the hall.

I got the chance to ask her if it was her first time here, and she replied that "no, she comes once a month."  Out of respect for her privacy, I did not say anything else, though I wanted to offer her support and wish her success in her recovery.  Because everyone seemed to be being so quiet about it, and because I did not know if she was public with her obvious illness (cancer patients often LOOK ok on the outside but the tell-tale IV bruise from a visit to the chemo unit tells a little known inside story), I quietly laid back and observed the scene, minding my own business.

This morning I googled her and I see she is publicly open about her disease and is a spokesperson for the Canadian Breast Cancer Foundation, so I would not have been out of line to be more open with her.  But I also know how it feels to want some quiet and privacy while enduring a chemical infusion, comfortable as the surroundings could possibly be, you still might just want to be alone in your head for a bit. 

When my treatment was finally done and we were gathering up our things to head to the next appointment, I turned to her a couple of times to offer a good-bye smile and eye-to-eye friendly support, but she was ear-phones deep into her ipad, likely researching a major political or entertainment figure for her next interview.  

I am content to have left it that way, and I won't mention her name also out of respect for her privacy, but I must say the whole thing made my treatment time fly by, and I am still thinking about it!  I tuned in early this A.M. to see if she was at work after her four-hour chemo yesterday and yes she was.. much to my chagrin Scott jokingly suggested perhaps I should be at work too as look SHE is! HA!  Pretty sure I threw something at him. ;-)

This experience also reminded me of how fortunate I am to be receiving world-class health care in this fantastic facility. Lots of people do, even celebrities. Sunnybrook Health Sciences Centre isn't just some huge mythical beast building in the faraway city, it is an incredibly professional headquarters for much of the ground-breaking and best medical services in our country. Having said that, I can attest that many patients agree that they still feel like they are treated like family. In the Cancer Centre for sure, a total view of my well-being and needs as a patient is taken into consideration with every step my medical team takes.   I thank my family physician again for so strongly encouraging me to proceed with my care there rather than chickening out with the closer centre.  

Back to nap-time now... and later I will read the issue of Sunnybrook Magazine I brought home from the sun-lit waiting room of the Odette Cancer Centre.  Thinking maybe I will email my polished Chemo neighbour as well and offer her fan support after all, let her know she has a friend in Meaford.

Week 10

Early morning en route to Toronto, Timmies in hand, trying mobile blog posting LOL

Goals for the day:
8am Bloodwork
10am Dr. Meeting
12pm-ish PacMan injection
(Somewhere in there a turkey sandwich on rye? The cafe at Odette Cancer Centre puts tomato and sprouts on them- my favourite!)
And...
3pm Consultation with Head and Neck Surgeon - wobble my way to the main building to talk about thyroid situation.

Scott and I are hoping it all goes smoothly and we may be on the way home around suppertime. Will see how it goes and will keep you posted!
Thanks for the good vibes, hope everybody had a good Thanksgiving weekend. :-)

Hurry Up And Wait

I was told at the beginning of my diagnosis that this "journey" is full of waits.  You are told some information and then you wait to hear more or wait for test results or wait for another appointment date or wait for a consultation or wait to be accepted or wait to be heard or wait to be seen or wait for remission or wait wait wait...  And I have found this to be true.  While I am not complaining - the last six months have overall gone quickly and my medical team is very diligent - some days it does seem to take forever to get to the next word or step. 

Two weeks since the thyroid results, and still waiting for details and a surgery date. Though last week I was told surgery cannot wait until the new year, it has to be ASAP. 

In the meantime I am kept occupied with the everyday stuff that comes with recovery from major surgery and having a young(ish) family and medical therapy treatments. There are good days and bad days, just like everybody has, they are just different. (For the record, there aren't just my ailments to deal with around here, there are ear infections and permission slips and teacher meetings and scuffed knees and phone calls and paperwork and appointments and the list goes on LOL  Lots of which I have help with, but some stuff I still have to do myself, and thankfully, I am still here to do it)  

These are unpredictable days; one day I can clean the laundry room AND cook supper from scratch, and other days I can hardly get out of bed.  It is very frustrating, as I cannot plan in advance which day will be which.  A crystal ball would be vastly helpful!  I rarely commit to plans to get together with people and I appreciate friends' flexibility and understanding with my unpredictable behaviour.  I have been known to abruptly bail from a visit and though I know my company understands, I still feel badly afterward.  

I spend a lot of time resting, but of course it is a daily struggle to give myself permission to take this time to rest.  I want my life back, I want to be normal and to go to work and to not have these ridiculous conversations about some crappy disease that has changed my life.  I don't want to be a burden to others, my family and friends.  I don't want to wait and to wonder what is next, what I should do about my future, or really what I can even do about it.  

Everything is so uncertain, there does not seem to be any good or concrete answer with melanoma.  There is no remission, nor definition to it's being gone, no measurement of the success of the therapy treatments.  There is just waiting, waiting for the next CT scan to see if it shows up anywhere else, waiting for the results every three months. Woohoo have another three months under my belt, as my cancer-survivor friend cheerfully reminds me.  

Stay positive everyone says... I assure you I am trying to do that, and I appreciate your positive sentiments and I am listening! (And most of all I need you to stay positive for me when I claim I can't do it) But the reality is that no amount of remaining positive alters the fact that my future is changed. The way I view my daughters, my family, my career, my finances, retirement? travel plans - everything! is different.  I am still trying to figure it all out and more than ever I am painfully aware that there is no single answer, no correct solution, and no plan.  Just wait..? Live for "every three months" for the rest of my life?  Better than the alternative I guess, but certainly makes me feel uniquely restricted.

I am trying to remain calm and follow my own advice to take one day at a time.  But the control freak in me is just plain freaking out.  It's all part of it I know, and maybe that is the lesson I am to be learning to take from all of this, maybe I am supposed to just chill and allow others to take care of it for a bit.  Thanks... but I was okay with how things were before. Just sayin'!  I'm not good at waiting, I don't like it, and I don't want to do it. 

Next stop: MRI

Perhaps we are going to get to the bottom of it: occasionally I can be a 'dizzy broad." Now I have to have an MRI for it.

Since starting my Ipi treatments I have had some spells of dizziness.  Nothing super crazy, blood pressure and sugar okay, no nausea, no hangover, just good old room spins whether sitting or standing, so my Oncologist has ordered an MRI at Sunnybrook.  She said she wants to make sure everything is all right as drugs such as the one I am taking can cause glandular problems ie. pituitary.  She said "not to worry, it's probably fine." (with an undercurrent of "geez we've got to come to an end of these positive tests for you at some point!?")

We spoke about the timing of it, she said she could arrange it for the same day as my next treatment, Tues. Oct. 14, but I am hoping to see the head and neck surgeon about thyroid that day and an MRI as well would just be too much.  

Normal treatment days already wreak havoc on my arms: blood out, pacmen in... lotsa bandage marks and two dead weight arms by 5pm. So I asked if perhaps it could be closer to my next CT scan in week 12, at the end of October (aiming for the 28th-ish as Cassie is keeping her fingers crossed for our traditional Halloween party on trick or treat night - good thing the girls are old enough to do most of the party prep themselves!). 

The Sunnybrook appointments seem to be stacking up again - appears that sooner than later I will be taking even more people up on their offers of rides, daughter-care, and overnight stays in the city.  Thank you for the many offers everybody.   I will keep you posted.

In the meantime, anybody with words of advice on MRI I'd appreciate tips?  I'm not really claustrophobic (found tanning beds comfy, remember), but otherwise... what to expect?  Is there dye or whatever injection like CT scan?  I swear I'm gonna glow in the dark by the end of all this!!