Re-Calculating...

Navigating the journey of a cancer diagnosis is a bumpy ride. Hills and valleys, sharp turns and steep embankments, long flat plateaus and an exhausting climb. Damned long drive, in my experience!

Things have been pretty quiet here the last few weeks as you may have noticed.  I have been resting up from the busy holiday season, and preparing for more Toronto trips and various treatments and procedures in the next couple of months. Monday I am to have the Week 24 bloodwork, consultation with my Medical Oncologist, and IV infusion of my first in the next four ipilimumab (Pacman) doses scheduled in my participation in the clinical trial for melanoma. 

Tuesday I see my new Endocrinologist, also at Sunnybrook, to learn more about what has happened in my body since thyroidectomy.  I went yesterday to Meaford hospital for bloodwork to check my calcium serum levels and TSH/PTH etc, related to thyroid and the new thyroid hormone replacement (which I HAVE been taking religiously, as instructed, one hour PRIOR to my coffee every morning).  My family physician will send results to the Endocrinologist, and he will determine further hormone dosage, calcium supplement dosage, and radioactive iodine therapy timeline and process. 

All arrangements made, Grandma and Grandpa have the girls tonight as they are taking them to the theatre in St. Jacobs tomorrow afternoon, so then girls go to Dad's, he'll take them to school Monday etc, while I was planning to spend Sunday night with my big-city buddy from high school, as I have to be at Sunnybrook for 8am on treatment days. 

For Monday night I had booked a room at the Lodge at Princess Margaret, to check out the facility I have heard such great things about, in case of future trips ie. during radioactive iodine treatment(s)?  Staying at the hotel we have found near Sunnybrook is awesome, but this time around I feel ready to check out the Lodge option of this experience and see how that goes.  Twin rooms with roommate, shared bathrooms, free shuttle to and from Sunnybrook, and three meals included with daily room rate, sounds very cool.  I feel ready to meet some more people experiencing things as I am, and thought it might be a good opportunity to broaden my cancer horizons, so to speak.  

Everything all set, meals planned, emergency backups for the girls in place, bags packed, and POOF.  Got a call from Oncologist yesterday afternoon: she has decided to hold off on my treatment for Monday. 

She wants to wait to see what Endocrinologist says about timeline of iodine radiation therapy.  I am now six weeks post-surgery, and we had been originally told goal for this treatment was 4-6 weeks post-op.  If I have my Pacman treatment Monday and Endocrinologist deems it too risky to do iodine right after, then my Oncologist would prefer we hold off in order to give opportunity for radioactive iodine treatment first. 

Cancel visit with city friend, cancel girls' sleepover at Dads, cancel Lodge reservation, cancel cancel cancel... *sigh*

I get it..  I understand why she is holding off on the treatment, and I trust her judgement. I just don't handle the shuffle very well. I have had a relatively peaceful month resting and preparing for all of this.  I'm ready - let's do it!

All that fuss in December fearing that I would be booted from the trial over the thyroid cancer treatment, and I am right back at that spot.

The clinical trial in which I am participating has a defined timeline to which every patient must adhere, I can only assume they all do?  Must need to have some controls in place in order to properly monitor drug effects on us precious guinea pigs?  My first four treatments had to be three weeks apart, +/- three days. 

I checked my paperwork yesterday, the next four doses are to be given three months apart, +/- two WEEKS.  Sigh of relief:  two weeks, I have two weeks to play with to get my pacman treatment in if Endocrinologist approves.  Sweet.. I can work with that!  I go back to Sunnybrook on Tuesday the 27th for my three-month CT scan anyway, so I could re-book my plans and have my treatment then perhaps?  Everything depends on the thyroid stuff, have to plan for the couple weeks of quarantine etc. as well.  No problem... I have plenty of time on my hands!?!

If the timing does not work with the Endocrinologist's plan, then that's it for my melanoma treatment, I'm out. :-(

It has crossed my mind that it's too bad I hadn't been able to my pacman treatment last week or the week before, while waiting for the Endocrinologist appointment?  Or perhaps the Endocrinologist consult could have been earlier, bump that puppy up a bit being as this issue is time-sensitive??  But I digress.... 

I am seriously trying to quietly come to grips with the fact that I may have to opt out of this clinical trial.  That's bad.  But it is a possibility that I can do nothing about.  My Oncologist tried to assure me that I have had the most important of the treatments, the first four in rapid succession were the big deal, and the four maintenance doses are really just a bonus, an extra to continue to try to slow the metastases of my melanoma.  

Again, I get that, but I would be more comfortable with that suggestion if they could tell me they know they got it.  The trouble with this melanoma is that it is the sneaky-sneakerson of the cancer family... one of those silent killers that is intangible; it cannot be measured nor detected or tracked, nor placed into what is commonly known as remission. 

SO.  There.. short story made into a long one, thanks for listening.  All I know right now is that I am going to see my family Dr. on Monday to discuss my list of questions for the Endocrinologist and get my bloodwork results to take to Toronto with me.  And Tuesday I will head out to meet the Endocrinologist himself, in the main wing of Sunnybrook, then head over to the Odette Cancer Centre to discuss the whole thing with my Medical Oncologist.  I will be home Tuesday evening. And I will have a lot more information at that time.

If you're still with me on this long-winded monologue, I'd like to share a few things I have learned about the trial drug I have been taking.  Until now I have kept a pretty tight lid on Google and I have not been permitted - or willing - to independently read up on my situation (in fact, I have a friend specially dedicated to being my personal researcher if something I'm told sounds just too wonky to comprehend - I text my friend and she is expert at looking it up and sugar-coating whatever reply she deems plausible to satisfy my inquiry).  Well, since my treatment cancellation call yesterday I have found a bunch of stuff about ipilimumab, highlights include:

• Ipilimumab is a type of immunotherapy known as a monoclonal antibody. A monoclonal antibody is a man-made version of an immune system protein that fits like a lock and key with a certain protein in the body.  Ipilimumab is designed to seek out and lock onto CTLA-4, a protein that normally helps keep immune system cells called T cells in check. By blocking the action of CTLA-4, ipilimumab is thought to boost the immune response against melanoma cells in the body.  (source)
• Ipilimumab works by stimulating T-cells in the body’s immune system. T-cells help to fight cancer and disease. CTLA-4 is a molecule found on the surface of T-cells and it switches them off. Ipilimumab blocks CTLA-4 so that the T-cells stay switched on and active and can attack the cancer cells. (source)
• Yervoy - Ipilimumab website
• Yervoy - Ipilimumab - Canada:  The medicinal ingredient in YERVOY is ipilimumab. What the important nonmedicinal ingredients are: Tris-hydrochloride, sodium chloride, mannitol, diethylene triamine pentaacetic acid (DTPA) and polysorbate 80.
• The cost of the drug itself, the four treatments I have had, are approximately $120,000.00 to date.   Holy moly- grateful to be Canadian.  Imagine if I lived in the States?  The cost of the drug plus the surgeries I have had, CT Scans etc... yikes.  Unfathomable. 

Just a small update, Mon. Jan. 19, 2015: 
In response to my comments in this post about why couldn't I have had my Pacman treatment sometime in the last two weeks? I was gently reminded today that they wouldn't have allowed me to have my treatment any sooner than today's scheduled infusion, due to my recent thyroid surgery. DUH I guess it slipped my mind that I am still recovering from thyroid surgery, only six weeks out.

Right.. yes, how quickly we forget. Though I don't know how I could forget, it still feels like I am wearing a very tight scarf at all times! Though I am happy to report that my mobility is better and the scar is healing well, with just a bit of lymphedema in the left side of my neck and under my chin. Anyway, just thought I would add that. I was not criticizing or questioning my Oncologist as much as I was berating myself for not having thought of asking her to have my treatment sooner.

This cancer journey is such a balancing act of self-directed participation constantly questioning your care, AND, being patient/listening/doing as you're told/just hoping you don't slip through the cracks. 

 

Article & Photos © Natalie Richardson 2015

Happy New Year

Wow 2015!  Cliche to say this but I don't know how it is 2015 already... doesn't seem that long ago I was living in Cambridge and elaborately decorating our glittering dining table for the turn of the century dinner party we were hosting with neighbours- woohoo 2000!!  Married, no kids, two-storey house in the burbs, sunroof in my car, socking away lots of cash making scads of money in the tech sector in Waterloo... my how times change!  LOL

Cliche again but I find myself reflective this couple of days into the new year.  Quietly reflective, not exactly my usual yay-it's-a-new-start self.  

I love New Year's Eve, it is my favourite holiday of the year, right beside birthdays.  I love the celebration of life, of birth perhaps, new birth and fresh fallen snow... on goals and attitudes, fresh outlook and a new start. Everyone does I'm sure? 

Though many people I spoke with this year said nah it's just another night who cares I was sleeping by 9.  Blasphemy!  I just couldn't do that, no matter how tired I am I have to see the New Year in. That's just me though, and if you're near me at midnight on January 1 you will be sure to get an enthusiastic kiss and loud cheering and sparkling wine toasts and love for your presence in my vicinity - whether you like it or not! ;-)

Now we're done the toasting and the roasting, I am resting and recuperating. Lots of fun this holiday season, lots of kids, family, friends, lots of food and drink, and not much thinking about reality.  It was a lovely break, and I am pleased that I managed to make all the gatherings and events we had lined up. Scott's company party, saw our Milner family and our Lambe family, and were the benefactors of many gifts of food and laughter - thank you everyone! 

The girls got together and got me a very creative and thoughtful gift, a beautiful scarf bearing my favourite slogan "Peace & Love" with an additional thought-provoking message:

We all got a few treats for Christmas, and I have some pictures of our favourites, I even managed to get a photo of all five of us (the first one on record I think?) during our gift of a turkey feast from my dear family/friends in Toronto. Veselych Sviat! xoxoxo

Spa day gift from a friend, Moms with matching toes 

and daughters with fancy foil manis! :-)

My new discovery, cinnamon tequila, a lovely replacement for the 

famed anti-freeze-containing Fireball...yummmm:

The girls' gingerbread house, short life it had but oooh tasty! :-)

I would like to thank everyone who contributed to our fabulous holiday in deed or gift, from Bill's valu-mart to McGuinty's Cafe and Simply Unique Flowers & Gifts, from Scotiabank to the Post Office, and all the way to Solitudes Day Spa - from my family to all of yours a sincere and heartfelt thank you for everything!  We cannot thank our community enough for all of the support you have given us. 

Thanks also for all of the wonderful wishes in cards, texts, emails  - among all of the well-wishes I gave and received for a happy and healthy new year, one of my faves was a wish for a "surgery-free 2015!"  LOL I am still chuckling over that and yes thank you I too am hoping for a surgery-free 2015. For myself, and for all of my wonderful friends and family. 

Back to the grind on Monday for all of us in a way, kids back to school (can you hear the grrrooans in the background?), Scott back to work, me back to appointments and back to serious consideration of how to handle everything now that it is a new year.  How to cope with my current recovery from 2014 health events and how to prepare for further medical therapies in January and February.  How to get back to feeling tip-top and prepare for the idea of going back to work at some point?  How to not panic that I am approaching the one-year mark since my melanoma diagnosis? And how to be grateful that it is just the beginning of the rest of my life, and I will just have to continue taking it one day at a time, as I have always done.  

Happy New Year everyone, and Thank You, 

Love...

 

(Claire received cake decorating supplies for Christmas so... 

let us eat cake!) :-)

Merry Christmas!

Just a quick post to send out my love, gratitude, and warmest holiday wishes to all of our family and friends, near and far.  I have had a wonderful Christmas so far and it is all thanks to those around me.  

We have had a festive few days full of turkey dinner, delicious beverages and baked treats, Scott's company Christmas party, and lots of visiting with friends, and surprises galore. Loving the hugs!! The next few days will be busy too, quality time with the kids and more time with family and friends to look forward to.  Now we have quieted down for the night and we are just waiting for Santa...   :-)

I feel like I already have everything I need, and I have been feeling better health-wise than I have felt in months! Plus I got good news from the bloodwork I had done today: my calcium levels remain in good shape, so I can back off my effervescent orangey calcium stuff from three doses daily to two. Yah baby every little improvement rocks, in my books.  Thanks to my family physician for texting me last evening to tell me to go to the lab this morning.  My neck/throat is improving every day too so I don't gross people out when I see them.  All is well!

I hope everyone has a fun-filled, lovely day tomorrow... Merry Christmas to All, and to All a Good Night!

Great news...

...for once!  Score one for the fight against melanoma - I get to stay in the clinical trial!

Just got the call from Sunnybrook - it's a go.  I can plan to continue my treatment schedule of Pacmen, and have the radioactive iodine treatment in between.  If the treatment times conflict, we just skip one ipilimumab and resume in April, but at this point I have my first appointment with my new Endocrinologist on Jan. 20th, the day after my next scheduled Pacman day, which I assume means we will plan for the iodine treatment at that appointment, perhaps for early to mid February.  

Holy crap what a roller coaster.  I am also celebrating that this is my last day for antibiotics for the staph infection because tomorrow I am going to celebrate with one honkin' BIG glass of wine!!!!

How to go from crying my eyes out to busting a gut laughing in two seconds flat?  Call my Mom with this news and she says "oh great! I guess the worst that could happen if the two treatments conflict is the Pacmen would be radioactive?"  LOL !! Picture it... little yellow circle men turned glowing green, just chompin' around... oh dear I am losing it!  haha

Back into the waiting pool

Another week post-surgery, and a busy week it has been!  On Tuesday Julie took me back to Sunnybrook, sans snow storm this time. 

In the morning I saw my first surgeon, the Surgical Oncologist who removed the melanoma-infected lymph nodes from my right abdomen and groin/leg in May.  She also keeps an eye on my chart and quarterly CT scan results, knowing that I am under the care of my Medical Oncologist in the meantime.  Her physical exam reported improvement in the tissue recovery in the surgical area so she was pleased, and she booked a follow up appointment for one year out.  

I will be monitored for the rest of my life in this way, by each doctor for different parts.  I am amassing a collection of specialists as I go along this journey!

After a lengthy wait in the afternoon, I saw my Head & Neck Surgical Oncologist to check out my thyroidectomy incision and surgical report. The pathology report was hot off the press too so....

Good news is I got the staples out of my incision! My neck is feeling better already, it is to the point where I can put some vitamin E on it and start healing the skin. I am willing to be seen in public LOL.  I got a new cream from my family physician, which is helping to fix the itch that was driving me crazy.  I can turn my head now too, have almost full range of motion and the swelling has gone down quite a bit. Not perfect, but a lot better than two weeks ago at this time!

Bad news is, there is good news and bad news: they removed 37 lymph nodes from my neck in total, and ten of them were positive for thyroid cancer.  Good news is it was thyroid cancer, not melanoma. I was pretty sure that wasn't the case, based on the biopsy I had already had which gave the diagnosis of papillary thyroid cancer.  But it is good to have confirmed that the melanoma hasn't spread to my neck.

Unfortunately though, bad news is that given the high rate of spread of the thyroid cancer, I have to have radioactive iodine treatment to follow-up the surgery.  All of the lymph nodes are now gone from my neck (interesting, to say the least, and I think I will be learning more about that in the near future?), but there is risk of cancer "crumbs" remaining on the table, in the form of cancer cells, thyroid cells, and/or cancerous thyroid cells, as I understand it?  So the standard of care in this case is iodine radiation, to get rid of those cells once and for all. Check out this link if you wish?

I don't know yet where this will happen, I assume Sunnybrook but may be able to have it in Owen Sound? It is a drink or a pill that I will have to drink, a radioactive substance that attracts any remaining thyroid cancer cells in my body and destroys them - when explaining this to the girls I used the "raid" commercial as an analogy: the thyroid cells like the iodine, rush to eat it then OOPS it was poisoined bait! Raaaaaiiiid!!  And poof - gone.  :-)  Over the course of a few weeks my body would clear itself of the treatment, and thyroid cancer hopefully becomes a thing of my past.  They do a scan to be sure they got it all and sometimes have to administer a second dose of treatment, but overall it is a conclusive finding after the end of it. 

Couple of minor complications about this:

1. I have to be in isolation to drink this radioactive iodine, and I have to remain in isolation for a period of approximately a month afterward?  You drink it in the hospital then stay in isolation for 2-3 days? so as not to expose anyone else, like a walking xray or better yet.. a walking Chernobyl accident. :-/  Then home I believe, but have to stay separate from my family, no chance of sharing body cells or fluids - saliva, sweat, sneezes, coughs, hand-touching, skin cells. No sharing dishes, laundry, bathroom, towels etc, no sleeping beside, or hugging anyone. :-(  Especially the kids.

2. There is this little thing called a clinical trial in which I am participating... oh yeeaaahhh... right - I have melanoma too. Shit I almost forgot!?!  *SIGH*  I am currently waiting for a call from my Medical Oncologist to see if the idodine radiation treatment is permitted under the conditions of my clinical trial for ipilimumab. 

Yes, please feel free to re-read that and pause to try to understand... I have been doing that since Tuesday afternoon!

After all of this fuss and education and decision-making and stress and waiting and treatments for melanoma, and with the snap of some fingers somewhere just like that!  I may have to opt out of my trial for melanoma treatment.  

I find this a bit bewildering after being told that the thyroid cancer is less a worry than the melanoma, but now based on the pathology of my surgery it has flipped and I am being told that the thyroid cancer is more of a threat at this point and I need to pursue the radioactive iodine regardless of ipilimumab.

Soooooo... Tuesday afternoon my head/neck surgeon consulted my medical oncologist and thankfully she was in the building and came down to see me at the same time.  I do appreciate that so much because this is quite a unique and confusing situation!  

She explained that she is very happy I successfully received the first four of eight ipi (Pacmen) treatments, and she recommends that if I have to opt out of the trial then go for it as there are not enough statistics to prove the remaining treatments three months apart are effective enough against melanoma to risk not treating the thyroid situation.  She literally said most people don't make it that far anyway so they can't conclusively say it works.  UM, seriously!? I knew she meant stage four patients, from which I am a slim margin away, so I tried to not take offense.  I'm sure she didn't realize what she was saying right to my face?! 

I swear, it's gonna be a heart attack that gets me, long before this frigging cancer.

So at this point I have a whole bunch of questions and I am waiting for a few phone calls.  I will list them here so that you know where I'm at, and please feel free to comment if you can think of other questions to ask that I have not yet answered or can add to my list to ask. I appreciate your help and support, and I will update with a blog post once I know more information:

- When will the iodine radiation treatment be?  4-6 weeks post-surgery, so mid-to-end January? Likely at Sunnybrook, think I would prefer that even though it is farther from home, it keeps me in the forefront of my medical team's attention.

- Will they allow me to stay in the trial even if I have the radioactive iodine treatment?  Don't know... my family physician suggests that there should not be any kind of conflict between the two treatments, but we suspect perhaps the trial people won't want to administer ipi in case I have some sort of strange complication and they are responsible?  Maybe my days as their favourite guinea pig are over?  :-(

- My next melanoma/ipilimumab treatment is supposed to be Jan 19th, what will happen to that?  If I opt out of the trial, there will be no treatment, and no option for one in future (unless as a stage four patient). As for further melanoma treatment?  I don't know?

 

- What will happen with my follow up care if I opt-out of the trial? One of the reasons I opted IN was for the CT scans every three months.  So far everything else wrong with me has been found by CT scan, that is my "litmus test" and there are several things they are watching, including the unclassified lesions on my liver. Family doc assured me that I will still have the CT follow ups, just maybe every six months instead of three, I am not too cool with that.  Maybe once I have a couple - or even ONE - in a row with nothing negative on it I will be comfortable waiting six months between scans, but until then?  I think not. Scan me please!

- I am waiting for an appointment with an Endocrinologist. What is an Endocrinologist?  Not sure, think that is the specialist that looks after hormones... thyroid specifically, pituitary, all the stuff that makes the body go round. I think he will be the one to watch my blood calcium levels and thyroid hormone function etc, but he may also be the one in charge of the radiation treatment?  Not sure, will keep you posted. That will be at Sunnybrook too. 

Ok please let me know if you think of anything else, my head is nearing chemo-brain capacity!

Several people have asked... holy how are you dealing with all of this?  My answer is: I don't really know.  I am upset and confused, but it is not the first time in the last eight months that I have been hit with a brick wall to overcome.  The girls and I are hugging each other tight and taking one day at a time, as we always do.

And yes Christmas is coming but that doesn't really change anything... we are having fun despite everything - we can't not, what with all of the love and support we are receiving. Scott will be home hopefully Monday too, and then he and Paige will be here for the holidays too and we can all hang out. We have some fun plans to look forward to!  And I will be hugging everybody lots, now that staph infection is gone and before I become a contagious glow-worm. ;-)

All of the texts, emails, calls, food gifts/deliveries, treats, flowers, gifts, surprises, rides to stuff, and other helpful things our family friends and neighbours are doing are very much pulling us through.  We can't thank you enough... but we will keep trying!  Thank you.  xoxo Will keep you posted!

Hoping you are having a happy and healthy pre-Christmas holiday week - talk to you soon.

Dreaming of morning coffee on a sunny day

Just thought I'd post an update on my progress this week, I have been very tired (and hideous-looking) so no visitors... but thanks for the texts and emails checking in. Grandma Iris and I were able to fill in any spare time this week catching up on a bunch of chatting, we sure make up for lost time when we get together!  My voice seems to be back to normal and it doesn't hurt, I can talk now. yay :-)

I feel better than I did this time last week, but I still am somewhat behind the eight ball.  It seems I developed a staph infection all around/in my incision, the peak of which began Wednesday, when the itching gave way to a sizeable rashy looking thing around my neck and up my throat. My nurse took one look and said we should have my Dr. look at it. We texted a photo (EW!) of it to my Doc and she called me back with a prescription for an antibiotic. Blech! Good call H. :-) Thank you. I got great relief from the sterile dry cold compress my nurse showed me how to make, and spent the rest of the night trying to not rip my throat off.

My neck/throat has been so sore and irritated this week, it is hard to find a comfortable way to put my head on a pillow. The swelling on my left side especially, goes right up my neck to behind my ear, my neck looked like a fridge.  I have had to keep it elevated too so all week sleep has been sitting up.  The incision itself feels like a tight scarf has been stuck around my neck with pinching little barbs digging into the skin which is puffy from the interior swelling.  My drain had a crazy day on Tuesday as well, seemed to overflow for whatever reason but whatever, that was a low-light of the week.

Thursday my lovely friend calmly chauffeured me to Toronto for post-surgery consult, not even a bead of sweat poppin' on her smooth forehead as we drove south out of Grey county on a snow day. Aarrghhhh I almost chickened out, but between Julie and Iris we got me stuffed in the car, sedated with a little chill pill, and cheered up with a Timmies for the road.  I just closed my eyes and concentrated on the burning infected thorn necklace wrapped tightly around my throat and poof! we got to Sunnybrook around noon - Yay Julie!

Had a quick but good meeting with my surgeon, he assessed the incision and approved the antibiotic for the infection - oops it just occurred to me that we didn't check with my medical oncologist to see if I can take antibiotics while on the melanoma treatment... too late now.  Anyway, he explained a couple of things about the surgery but not much, we don't have the surgery report or the pathology report yet.

He said he removed ALL of the lymph nodes in the left side of my neck so that is why it is so swollen and sore.  He checked out my drain and - best part of the day - he removed it!  I go back this Tuesday to see the surgeon again to remove the rest of the staples and assess my blood for "ionized calcium serum" levels.  

I am still learning to understand what is the importance of ionized calcium serum levels?  I think this is not the same sort of calcium that we think of for bones and teeth?  

Thyroid, and more importantly parathyroid (there are four little pea-sized parathyroid - two of which I am now missing - tucked in behind the butterfly-shaped thyroid gland in your throat) regulate calcium, and I guess if it goes too low you can die?  I had no idea.  I was sent home sternly lectured to get to emergency immediately if I felt numbness or tingling in my fingertips, cheeks, lips or tongue.  Thankfully, none of that, but I certainly am motivated to take my calcium stuff!!

I thought I came home with a lot of prescriptions after my surgery in May - HA!  I have to take a truckload of stuff this time, most are temporary though phew.  

• 3x daily I have to take an effervescent orange-flavoured drink containing 1000 mg of calcium each, plus a fancier vitamin D supplement than the one I already take. These are for one month only thankfully, it feels like a full time job managing all of my medication times. Will take a regular calcium supplement for the rest of my life, but not the pricey prescription stuff after this month.
• pain meds as required, which has really backed off, usually just later in the day and bedtime for my left shoulder/neck
• antibiotics 4x daily (and of course... probiotics!)
• thyroid hormone replacement - lots of info to come on this one.  I was vaguely familiar with this little pink pill as my Mom has taken them since she had her thyroid removed in her early thirties (I'm not allowed to be specific about my age and her age when talking about stuff like that heehee - she still hasn't forgiven me for telling my grade *blank* class that she was 38 years old at the time! eeek!) ;-)

I have to complain for a second - imagine!?  The surgeon strictly explained to me that I HAVE to take this thyroid hormone supplement every morning on an empty stomach. An hour before anything else. Even coffee. For the rest of my life.  

NO COFFEE for an HOUR after I wake up EVERY DAY for the REST OF MY LIFE.  AN HOUR!?!?! 

It's the little things in life that get you... please tell me you understand the importance of my morning coffee - it's all I have left for crying out loud!! I LOVE coffee immensely, I have backed off consumption of it over the years, even went as far as trying to quit a couple of times, but my love affair with coffee is much like that of my affection for the incomparable rays of the lovely sun. Warm, strong, life-giving and never-ending... coffee, just two small cups, the thing that for me makes getting out of bed every morning bearable.   

Okay, I'm done exaggerating that for the moment, but I imagine many of you feel the same way.  Whatever little part of your morning ritual that makes your life your own, think of delaying that for an hour.  Who has time for that?? Right now I can lie in bed for an hour counting the seconds til I can stumble with my eyes closed to the keurig, but someday this cancer sabbatical will end and I will have to get up at THREE AM just to get ready for work in the morning??

Scott helpfully told me that this delay in morning coffee is a small sacrifice to make, it is a decent tradeoff for having cancer in my throat, and I should quit complaining.  He's a brave man saying that while he's in Saskatchewan!! LOL

While I am complaining, please let me elaborate a little on the one other thing that is making me a bit crazy these days: the itching.  I have a terrible rash which must have stemmed from the staples or the ointment they used or the staph infection? Pair this rash with my history of psoriasis and my current chemotherapy side-effect of itchy skin, and I am spending a lot of time applying hydrocortisone cream.  

I found myself thinking this morning that I would give just about anything (including my morning coffee - for a week!) for one half hour in the sunshine. Sun. Right now. Please!  The rash is all over my neck but now also on my face and forehead, arms, knees. I hate it.  

I know my skin well from dealing with it for so many years, and I can tell you with all certainty that one hit of real natural (or tanning bed) unadulterated UV rays would zap this irritating hot pink dry painful frigging itchy skin!!! It is a vicious circle for me, I have always used sun to cure this type of skin flare-up, but now that I can't do that I fear this rash will now stay for the winter.  Nothing helps it like the sun.

Phew thank you, I think I am exhausted of venting. 

Guess I better wrap up anyway, geez I am long-winded - lots happens while I slept the week away!

It was wonderful to have Grandma Richardson here, she was an amazing help too - I am humbled by her energy and her calm cool approach to everything.  She is one amazing Lady, that Grandma of ours (which I have always known but wow an up close reminder this week).  :-)  I was able to rest and relax while she anticipated every need the girls or I had.  I had a couple of rough patches too, not feeling well and post-surgery side-effect stuff and she calmly put up with my whining, pacing, and bitching, plus she gave me good advice when I needed it.  As always.  Thank you Iris, for everything this week and always!  I love you.  And thanks Grandpa for letting us steal Grandma away for the week. xoxo