Grateful

Wow I am truly overwhelmed today, with gratitude, for everything in the past day or so.  I sincerely appreciate the calls, drop-bys, offers of help, and deliveries of stuff today and yesterday.  I can't even express how helpful it has all been, whether by email, text, phone, or in person, I have had so much assurance, that I am almost starting to believe that things will be okay over the next few weeks.  You are such amazing friends thank you thank you thank you!

Snow removal today was huge - several people arrived throughout the day to plow out the driveway, one of which I was aware had already been gifted to us by my very special you know who you are. :-) Thank you!  And to the others, thank you also, I will track you down at some point and figure out who you are?  LOL 

(umm... that's my car...)

Food - oh wow thank you! I have been feeling so worn out from the treatments, that my usual hobby of cooking seems to be taking a break at the moment, I have no desire or energy to shuffle around the kitchen after covering silly other little basic tasks like waking up.  Thanks to all of you who have heard me and brought stuff by.  The girls extend their thanks too!  yummmm  Pea soup with smoked turkey, fresh fruit and veggies, cauliflower soup with cheesy garlic croutons, chicken and quinoa soup, pecan pie, pasta casserole, pork chops in gravy, cupcakes, omigosh all SO delicious! AND stuff for the freezer too! And healthy, mostly hehe!

Another act of kindness today happened at Sunnybrook but affects me in a huge way:  this morning on my parole call I spoke with the nurse about my last CT scan (Oct 27) results which I was reading online for the first time this insomniac morning around four.  

I read the paragraph written by the radiologist about my neck CT, and noticed there was description of problem lymph nodes on my left side as well as the right. They describe the nodes with measurements in millimetres, yuck, they're not supposed to be that big.   I know the surgeon examined my neck with ultrasound when I met him, but he didn't look around my left side very much. I could have been reading the report wrong, but I brought it up to the nurse on the phone as I would hate to have my thyroidectomy plus central and right nodes removed, only to find out a few months from now that I need to have another surgery because they didn't get it all?

The nurse OFFERED to print the report for me and physically walk it to my surgeon today and bring it to his attention - I was blown away, as they are awesome down there, but this was above and beyond what they normally do.  Not only did she do that, but she CALLED me back this afternoon to confirm that she did actually take the report to my medical oncologist and together they took it to my head and neck surgeon.  

Do you know how many phone calls and voice mail systems I would have had to endure to have that happen without her help?  Oh geez I thanked her so much... she is the one from up here; we were talking about small towns this morning and I was gushing about how lovely our snow day is today and how fortunate I am to have such wonderful support around my family.  She said she was raised in Goderich and misses that feeling not living in a small town now. 

I do love this small town, and I love a good solid snow day like today, but this has to have been the best one in my history.  I had someone ask me today how the heck I can get any rest with everything going on here, as I should be taking it easy leading up to my surgery, and it's a good question! But I have been able to rest easy today (between visits) with all of your help. 

Oh shoot one more thing (will I ever post a SHORT blog??) - amazing news for Claire:  I spoke with her leader at the upcoming theatre production, and while we were chatting about play rehearsals being cancelled due to weather tonight, I gave her a heads up about Claire's ankle.  I explained how upset Claire is that she may not be able to be in the play as she wouldn't be able to swing it all with no weight-bearing on the broken tootsie 2 1/2 weeks from now, and she said not to worry, they will figure out some way to make it work!  

Claire and Cass are "wood nymphs" in the play and this lovely lady told me to hug Claire and tell her not to worry she would NOT have the play without Claire being on the stage.  Yes here I am blubbering again... she told me that their costume designer is a genius and if they have to decorate Claire's cast as a tree stump and wrap her crutches with "vines" then that's what they would do to have her participate.  Claire is happy - happy tears all around. 

So... full bellies, warm and cozy not drifted in anymore, and our eyes leaking out... we may be a bit of a mess over here, but we are a happy mess.  Thank you my friends, how can I ever thank you?

Snag #7842703

So in my last post I mentioned my fated Mario-style constant jumping and diving of obstacles, on fire.  Well Claire and Cassie seem to have inherited my love of adventure... and their Dad's love of breaking bones. Sorry Doug, I am blowing wide open our long-standing joke (reality) about all of the girls' broken bones growth plates bumps bruises etc. being from your end of the gene pool.

Claire broke her ankle Thursday evening playing basketball.

Yesterday we spent the morning together at Meaford Hospital (you may recall I was desperately avoiding the place just this time last week?) and emerged with an air-boot cast thingy, thankfully I was able to talk the Doc into that instead of a plaster cast.  

Claire can remove it for showers - thankful again for the bathroom reno we did this past March which includes a walk-in shower with seat/bench - and to change her clothes but otherwise she has to keep it on and pumped up.  

How does this affect our family dynamic you ask?  Yes we are a bit busy these days... did I mention the stage play in three weeks?  Claire is bound and determined to continue with the play, her super-woman approach scares me.

I just called her at her Dad's, she said the cast is very uncomfortable to sleep in and she has to plan her activities to allow more time, her armpits and hands are already getting sore from her crutches, but she is actually pretty experienced at this so she is adjusting quickly.  Dad is pampering her with her breakfast of choice today, chocolate chip pancakes I hear.  :-) Phew, happy to talk to her and to Cass.

Cassie did just remind me on the phone that she now needs to be extra careful again because their injuries seem to alternate... Claire Cassie Claire Cassie Claire Cassie sigh sigh sigh AGH!  I asked her if she could please wait until the new year as November and December are sort of booked up.  She huffed - the nerve! ;-)

On facebook last night I posted that I will be getting the girls bubble wrap for Christmas, and a membership to a CHESS CLUB.  Seriously, for those of you who know us you may be mentally trying to tally the breaks and bumps the girls have had in their short active lives, I think one of my jobs today will be to go back and add them up.  We started with Claire's broken collarbone (ice skating) when she was in senior kindergarten, then Cassie's concussion (a climbing mishap at school) in grade one, Claire's broken and dislocated toe which needed surgery, Cassie's broken wrist (then broken thumb from an ATV accident while in the cast for the wrist - just saying!), at least a couple more broken toes and a thumb (TWICE) since then.... I'm exhausted. 

Trouble is, Claire will be too.  Luckily this break is in the growth plate, so it should heal quickly (she is gulping milk with her pancakes), follow-up xrays in three weeks - oh yah I can't make that one.  :-(   But the next three weeks will be interesting, she will have to foist off her babysitting job(s) - phew for a twin, Cass said she'd take over in the interim.  And their dog-walking job will have to have other arrangements - somehow I see myself being roped into taking the less active pooch around the small block with Cass and her active puppy charge?  Not to mention the play and rehearsals. Grade three piano lessons/practice without pedal. And school, they are smiling over the fact that they will get rides to and from school now for at least three weeks. HA HA Mom. 

Just to throw in my whiny cents worth again this morning... I have to mention that this affects our home life too.  The girls have been doing a great job at helping out around the house extra and now I've lost my star helper, and the secondary star helper as she will be tending to her sister. For everybody who has or has had kids with broken bones and crutches etc, you know how incredibly invasive the damned things are to your daily household routine.  I will have a full-time job on my hands trying to keep the kid down and resting more let alone pick up her slack in the chores I already have been having trouble doing.  

I think I am going to finally take up CCAC (I have ongoing nursing care, thankfully!) on their offer to help around the house.  I have been resisting that thinking that housework is therapeutic for my rehabilitation, and my family has been great at picking up the slack. But it may be time to call in that favour.  And... again... I find myself thinking that I need to get better at asking for and accepting help from all of my friends and family who are offering to help us. Damn my independent streak - buddy I think we are fighting a losing battle!?

I am going to sit down today and make a list of the stuff I/WE need help with in the next month-ish and I'm sorry to say... I will be in touch.  Thank you.... and did I mention... thank you. Thank you thank you thank you.  :-) 

Some injury pics from the Richardson girls' archive:

 Claire's baby toe fracture and dislocate - 

surgery with pin Owen Sound, Nov 2011

 Cassie's broken wrist, biking, June 2012

Thyroid surgery date

So.. three weeks from now I will be without my thyroid gland and all the lymph nodes in my throat and right side of neck. Ew gross, I guess that sounded a bit graphic. Blech  Surgery grosses me out SO much!!

I finally got the date confirmed yesterday, my next surgery will be Wed. Dec. 3, 2014.  Complete thyroidectomy, central node dissection, and right node dissection. Hey did I mention I don't want to do this? I can say I have had a "node dissection" before and it's not friggin pleasant. 

Oh and did I mention that that week is crappy timing??  Claire and Cassie are in their "Kids in the Meaford Hall" Christmas 2014 production of "The Lion, the Witch, and the Wardrobe" for which they auditioned in September and have been furiously practicing twice weekly. *sigh*  Yes, I know, I can watch the dvd.  But this is Cassie's first play, Claire's second, and they both have stage roles with lines for the first time.  :-(  Not to mention the sheer number of performances (2 Thurs, 3 Fri, and Final show plus cast party Sat, THEN Meaford Santa Claus parade Sat. evening, in which the girls will be on the Bill's valu-mart float) and all the dress rehearsals and people-shuffling that will be going on from our house that week, Dec. 2-6 will be a total write-off.  Someone - Please sedate me!!

If you have kept reading through my whinyness again so far today, I will continue with a few quick details. LOL Thanks for listening.  :-) 

The surgery will be at Toronto East General Hospital. Yep.. why not throw us another curveball - I'm someday going to accept that I am just like one of the Super Mario Brothers: constantly jumping and diving obstacles. On fire.

I asked if I should be concerned that my surgery won't be at Sunnybrook and my new best friend at Dr. Higgins' office assured me that no, this happens all the time, and I should only be concerned if I was to not have Dr. Higgins. OK. So pre-op admission appointment and surgery date will be at Toronto East General, and post-surgery appointment will be back at Sunnybrook. 

My lovely and loving Mommy :-) will be taking me to surgery again and putting up with my sorry ass seeing purple tarantulas in the recovery room, and will assist me home upon discharge which should be the following morning Thurs. Dec. 4.  As for the situation at home I am still working on that, thank you for all the offers to come stay with the girls, we will work it out ASAP.

Pre-surgery date is Tues. Nov. 25, and it's looking like post-op will be Dec. 11 but that is not yet confirmed. (hey... why not wait til the last minute?)  I do currently have my Week 18 clinical trial check-in appointment for Dec. 8 but that will have to be moved, as will my Dec. 9th 6-month follow up with my first surgeon for the "right groin node dissection" surgery I had in May. hehe How many more times can I say "dissection" today?  YUCK.  Don't even ask me how to pronounce that - I think it's something like what I used to do to frogs and earthworms and cow eyeballs in high school biology.

OK enough bitching for now... have a great weekend everybody.  Thanks again for your xo's and support.

"Unremarkable"

Unremarkable.  Not really a remarkable word, not one I tend to use... sort of bland, non-descriptive, unsatisfactory, un...well... remarkable.

unremarkable 

/ˌʌnrɪˈmɑːkəbəl/ 
 

adjective
 

1. not worthy of note or attention. ordinary, not special. not notably or conspicuously unusual. not extraordinary.

Well I like it!  "Unremarkable" is quickly working its way up the ranks of my favourite words.  I had never before wanted to be referred to in any way as unremarkable.. my how things change.  See, when you have repeated medical tests for a health concern that's the word you want to see.  

Radiologists and surgeons consider a result unremarkable if that means there is nothing to report on it. ie. "Natalie, we have your brain MRI results: everything looks good, the report says each scan is unremarkable."  

So phew, my brain scan is unremarkable.  Hhmmm... yes, please feel free to snicker over that, I am! Brain is there apparently, but there is no hereditary calcium deposit residing within, and there appears to be no damage to the pituitary gland - yay for unremarkable.  Just a dizzy broad then, surprise surprise.  Thank you ipilimumab treatment for bringing to attention something we already knew. ;-) 

I have had about a half and half ratio of good reports and bad test results, and I have taken note of the unremarkables... 

- an ultrasound saying "unremarkable" got me out of a needle biopsy on a lymph node they've been watching in my left underarm (thank YOU Sir!) 

- post-surgery notes in May stated my behaviour under anesthetic was "unremarkable" (PHEW that's a good thing! I've heard past reports of my fantastic singing and dance moves while "unconscious" LOL)

- CT scan organ descriptions: "pancreas is unremarkable" - well that's one at least!  One down... a bunch more to keep an eye on. 

At least that's one thing accomplished this stupid terrible week, found out my MRI results are fine.  Still waiting for CT scan results from Oct. 27 but thinking no news is good news on that one.  They're busy enough with my fever calls and thyroid problems... we'll save the rest for later.

 

Week 14 Bad.

After my exhilarating day last Friday I went to bed early on a natural high of having had a successful independent zip to Toronto for my MRI.  Had supper and a little beer to help wash the contrast dye through my kidneys, hugged my babies, and snoozed peacefully through the night.  Then I woke up.  

Saturday was a bust from the start: I had a very high fever and felt terrible - felt like I had been hit by a truck, but a faster, bigger truck than the usual truck.  Everything ached, excruciating headache, pain in my leg and abdomen, dizzy, no appetite, fever fever fever. The girls helped me get some juice and meds to try to bring down the fever, and that's more than I could take. Out from under the 7000 blankets I was huddled beneath, had a shower, and went back to bed. Thankfully Scott came home from work at some point Saturday afternoon, but I do not recall seeing him until Sunday. 

I am feeling a bit better now, but it has been a long week, and I have been through a bunch of stuff.  I am writing now because I am exhausted from stomping around here like a grumpy baby - even more grumpy because I can only properly stomp with my left leg as my right one is too sore. Gggrrrrump!!

It has been determined that I am experiencing a mysterious (but not before unheard of) situation of my treatment drug's side-effects "ganging up" on me.  This past Tuesday marked four weeks since my last treatment, which was the fourth of the first four (next one in January).  My family physician suggested this is perhaps why they give you a break after the first four treatments in relatively rapid succession. 

It could be that I had caught a flu and this is how it was presenting itself, but I have no flu symptoms - no nausea, vomiting, cough or sore throat (besides the already throat-choking feeling growing with my thyroid tumour) and I had emergency bloodwork on Tuesday to check white blood cell count which was low. 

Speaking of emergency... SIGH... I got in trouble from my parole officers. I did not take myself to emergency on the weekend when I was fevered, and I was bitched out - pardon my french Sternly Reminded - that I was given strict instruction at the beginning of the clinical trial to head to hospital upon any freaky symptoms.  

Couple of points I'd like to make in my defense:  

1. I do not run to hospitals for fevers (obviously unless I hadn't been able to bring it down with ibuprofen or if it persisted for daaaays) and I knew I wasn't yet dehydrated.

2. I have maybe become slightly spoiled with all the red carpet treatment at Sunnybrook - if I was going to go to a hospital I wanted it to be MY hospital. with MY doctors. (and my family doc was just returning from her annual trip abroad so I knew I couldn't even get her in Collingwood)

3. Had I gone to the hospital they would have just called the resident medical oncologist on my wallet card from Sunnybrook and then sent me home. I could do that from my bedroom thank you very much.

ANYWAY... I recognize now that maybe I should have gone, even if only for trial documentation purposes and for bloodwork on the spot during the fever. 

On Monday morning I felt marginally better than I had on the weekend, though still better. I was a bit panicky about the abdominal pain I was having and still extremely achy, tired, headachey, and still no appetite (that in itself should be a red flag as I have clearly been able to eat throughout this ordeal).  I phoned Sunnybrook when they opened (which is when I got bitched out), and they advised me to see my family doc. So I saw my family Dr. on Tuesday, got a head to toe exam and a new prescription for stomach acid being as I am not eating? and have been home resting the rest of the week.  I am able to drink water and ginger ale, some tea and coffee, but food turns to sawdust in my mouth and I recoil at the though of having any of it. 

Meanwhile I have also been working with my head and neck surgeons office and my family docs office via fax to set up my thyroid surgery.  Aarghhh  perhaps it is simply stress that has set off my barrage of symptoms!?!

It is certainly an interesting experience, which I why I am sharing it.  I did NOT expect to have a setback at some random point in my treatment, and though they are the typical symptoms I have already been experiencing, they have bombarded me all at once and with a severity that makes me grateful for the relatively little side-effects I had had until now.  Thank god I'm not on a traditional chemo - I doubt I'd be able to hack it!!! Kudos to those who do. :-S

My oncologist, family doc, and information I have read all have said that this concentrated flurry of side-effects could mean that the drug is working effectively (which means it has a tangible sensation) on my melanoma-affected area (hence the right-side lower abdominal pain).  

There are two ways to interpret this theory: 

1. Yay!  its working :-)

2. Crap! its found something to work on. :-(   If you don't know what I mean.. one of my first posts elaborates on how there is no way to detect whether or not there is still melanoma disease actively in my body hence the CT scans every three months. Trouble being if it shows up on CT scans, means it has already spread to something. Bad. :-(

So I will just keep resting and talking to my medical team on the phone (Parole called me again this morning! and its Thursday!) and grumping under my blankets. My family has been kind and tolerant but to be fair I think they are happy I have turned to writing and paused the stomping. 

Sunnybrook MRI - done!

So today I buzzed down to my new favourite big city and passed the test of the famed MRI.  Mark it on the calendar: I was early. AND they took me early! For the first time, I didn't have to pay the max price for parking! Was in and out of there in record time.

Thanks to everyone for the great advice for the MRI, they didn't let me listen to music, but I quickly learned that I wouldn't have been able to hear it anyway.  HOLY that's loud! Imagine jackhammer/war raid siren/rock concert sound check, in your PILLOW. As the nurse set me up in the head gear and prepared me to go in, asking me if I was relaxed, I said yes and joked that I would be "in" Italy in a few seconds... she said have a great trip!  At the intermission, when she came over to inject the contrast dye, I told her that that was the loudest plane trip I had ever taken, to which she replied "hey guess you got stuck in the cargo hold?!" Just my "luck!!" LOL

So maybe that was a silly time to try to get back into meditation, as my nurse yesterday suggested may be beneficial for a Type A personality melanoma patient. ;-)

I was nervous about the test, but I took comfort in first-hand accounts from several of my friends who have had Magnetic Resonance Imaging and are here to give me great advice about it.  I was also thinking of my Dad a tonne today, as his history is steeped in time spent at Sunnybrook Health Sciences Centre as well.  

When I was 14 my Dad had brain surgery for a condition that at the time was little known.  I'm sure I could look into it and find far more science on his situation this 24 years later, and I am confident that his experience lent much to that research.  Occasionally I ponder the idea of asking my oncologist if she could help me with poking around in old Sunnybrook records to find out more about the last years of Tom Milner's life.  

My Dad's medical story goes like this: he had a "calcium deposit" in his brain stem.  Not cancer, simply a calcium deposit that had grown over time, and all of the blood vessels and nerves had grown through it and were intertwined in it.  He had major dizzy spells and a couple of minor strokes that caused him the loss of his license (he was a truck driver, so you can imagine the feeling of sudden loss of profession, career, masculinity?). Dad must have been around 49 or 50 years old at the time - I'd have to check his birth certificate.  

His MRIs began around the fall of 1988, after my Dad fell down in the driveway of our winterized cottage on Riley Lake just outside of Gravenhurst, it was a very tumultuous time in my life. 

By autumn of 1989 they had diagnosed the calcium deposit and decided to do what was called "experimental surgery" at the time; I was in grade eight.  My account of it may not be entirely accurate, and I welcome family and friends to comment here or email me if they have details to add that I may not have?  I'm sure I was fed the kids' version of what went on, plus I have a poor memory for details that I don't understand or want to accept (I've identified this involuntary habit in myself).

They removed the calcium deposit in a lengthy operation somewhere in the surgical bowels of Sunnybrook hospital, and it is not lost on me that my surgery(ies) could be in the very same room which held my father.  I remember his account of the story, prior to the surgery he was told he had a 50/50 chance of survival, but he was willing to take the risk as he already knew his life was forever altered and he may as well take the chance.  

He survived the surgery, but what happened after it is fuzzy to me... he had a major stroke (or two?) shortly after post-op recovery time, and he pulled through, but was left in the condition of a stroke victim. He never walked again, completely lost motor function in his left side, his vision was blurry so he couldn't read or watch TV, he needed full-time nursing care for the rest of his days. I wish I knew more about how much was the calcium deposit effects, or the surgery itself, or the reported strokes afterwards, that affected my Dad for the remainder of his short life?

He went from Sunnybrook to a rehabilitation hospital in Toronto (I forget the name.. River-something? I remember being taken to visit him once), and then we all moved to Palmerston, after Dad was found a long-term bed in the chronic ward of the Hanover hospital. 

He lived there for about seven years, throughout which our family history took some unfortunate turns and I ended up being his sole caregiver and executor upon his passing.  It is a time in my life that weighs heavily on me.  I was busy trying to live my young life but I was caught in a quagmire of other peoples' issues.  It is what it is... After years of therapy I have come to terms with the fact that I did the best I could at the time, but I know now that I was so young, inexperienced, and without much guidance - had I known then what I know now I could have handled things so much better. 

Anyway...upon his death in 1998, Dad decided to donate his body to the University of Western Ontario, I'm sure in hopes that he could help others in his situation.  I have remarkably little paperwork detailing this whole ordeal, but I cling to the thought of perhaps he and I sharing an MRI machine today.  Of course in reality I know they must have new machines now but still, it could have been the same room?  I know we have already travelled many of the same steps in the main building of Sunnybrook.  

Myself, my siblings, uncles and aunts, and offspring are also encouraged to keep an eye on our brain stem health, but because I have such vague information on the history and condition, I haven't really pursued it.  It is in the back of my mind, so to speak, so that's why I so willingly accepted the MRI request given to me by my medical team.

We have ruled out blood pressure and blood sugar, so my dizzy spells are most likely coming from the chemical treatments I have been receiving since August, but I don't mind them doing some investigation into my cranium health, just in case.  I was able to confirm with the technician today that this MRI includes imaging of my brain stem.  

Should have test results in a couple of weeks. 

Thank you to all who offered to drive, meet, or host me today. :-) But I needed to do this one on my own.