Notes on the journey I didn't plan to take... Motherhood, Melanoma, and making it to my Maserati
Wednesday, December 24, 2014
Merry Christmas!
Friday, December 19, 2014
Great news...
Thursday, December 18, 2014
Back into the waiting pool
Sunday, December 14, 2014
Dreaming of morning coffee on a sunny day
- 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!) ;-)
Tuesday, December 9, 2014
Bon voyage Dear Warden...
Monday, December 8, 2014
Well... THAT happened.
- Tues. aft we saw medical oncologist for the clinical trial consult, everything still on track to go as planned, next Pacmen treatment for Melanoma is Jan. 19, 2015. And no, unfortunately the pacmen won't go after any thyroid cancer cells possibly left behind, it is specific to melanoma only, which is why the surgeon worked so hard to remove as much thyroid area as possible so that hopefully I can avoid iodine radiation treatment which could affect my trial drug treatment schedule. Med. Onc. and Thyroid Surgeon working closely together - thankfully!
- Surgery was Wed. a.m. first thing, I spoke with surgeon before going under - I think the part I hate the worst about surgery is having to climb onto the cold operating table myself and lie there while they talk to each other and hook stuff up to me knowing that I am about to have who knows what happen while I am asleep. It is literally terrifying.
- Surgery took 4+ hours, ended up being far more extensive than originally thought, and I now have 32 (yep, Mom counted) staples circling my throat. Dr. Higgins told Scott that he took as much as he could so as to try to avoid having another surgery. I have a drain in the incision as well, but it is working well so hopefully my homecare nurse can remove it tomorrow.
- Total thyroidectomy, and central and right node dissections as well, plus extensive work on the left side, in fact the left is worse for pain and swelling so I am looking forward to reading the surgery report and pathology reports to see what happened?? Also he took two of four of my parathyroid? which I am told is crucial to calcium levels so I am being heavily supplemented and monitored for calcium.
- Have another fistful of prescriptions, major calcium supplements to take 3x daily for a month, plus the thyroid hormone replacement for the rest of my life.
- Night in the TEGH semi-private was better than the night in Sunnybrook short stay unit, the nursing staff was far better than I had feared they would be after the dismal pre-op appt.
- Post-op recovery not as great as last time, very heavy chest and lots of coughing even still today, which hurts. Nausea too, darn no purple tarantula this time?
- Long story short we got home around 8pm Thursday, major traffic jams longest day ever but got home phew... and sadly Scott had to quickly pack up and head to work back downtown Toronto for Friday morning rushhour! :-( Poor guy - don't know how he handled it all but he was amazing. Thank you Scott! <3
- Everything at home has been great too, the Warden mothered us all over the weekend while I primarily sleep, she has gone home now and a new Warden is coming, Iris, the girls' other Grandma, to help taxi, feed, and shuffle my adorable and busy offspring. Thanks in advance Gramma - I'm staying downstairs!! ;-)
- I am able to drink, cool liquids especially yummy, protein shakes and chicken broth with the odd coffee for good measure. I can eat, but chewing and swallowing meat is a terrible feat right now so screw it, handy I'm not hungry anyway! It's hard to open my jaw much anyway and I still have a tonne of swelling on my left side so it's fairly painful.
- Pain is better than I thought it would be, it is manageable which is good.. and I did figure out how to wash my hair and brush teeth this morning - nothing like a Monday morning to get you moving. I cannot get my incision wet so thankful for the handheld showers we have plus all my practice after surgery in May.
- And the incision.... yes... it is large. It is uncovered and wide open for viewing, you can't miss it, and I think it is totally GROSS. Frankenstein jokes abound LOL and its OK, I don't mind. The girls aren't afraid of it so that is my main concern, I freaked out when I first saw it but I am assured it will heal well and scar should be minimal. It is disgusting, I can say it.
- I have not had much company and honestly I just can't right now, it's too tiring and painful. AND GROSS! Kids Grandmas and nurse is all I can handle, especially 'til the drain comes out. But I am feeling better every day so should be more mobile faster than the May ordeal.
- Post-surgery appointment is this Thursday, hoping at least some staples can come out then? But will see.
Tuesday, December 2, 2014
T - 24 hours
24 hours from now I will be blissfully unaware of my surroundings, which will be a vast improvement over how I am feeling now!
I hate surgery, have I mentioned that? Sorry, venting..needed a whiny moment.
It is very difficult to dread something so much but still have to keep sane plus maintain order around the house and family plus prepare for being away from home and out of condition upon return... sort of like preparing for a vacation, except not like that, no benefit of sunshine and palm tree drinks anywhere in between. :-(
The girls are settled with their lists and comforts, laundry is done, cat litter cleaned (and kitty's nails are trimmed so she is happy LOL), fridge and pantry are all set for Mom and the kids, my bed is all ready for me to snuggle in when I get home in my drug-induced haze.
Ah yes the drugs.. I am not shy with the nurses in that department, I ask for a shot as soon as I have to hand over my clothes and glasses. Yes- glasses! It is the stupid little things that freak you out when preparing for surgery, I feel very disoriented without my specs I am blind as a bat so hopefully the wait for surgery goes faster than the arrival of the panic attack.
Saying goodbye to the girls this morning was the worst.. we really hate being apart from eachother. :'-( I am now just numb with the knowledge that we have all done everything we can to prepare, we have climbed this hill on the roller coaster and now all we can do now is whoosh down the other side.
I am reassured by the fact that the girls will be so busy with their play rehearsals and performances, though I will be missing their play (for the first time ever) - that was a tough batch of tears to choke back last night. But their Baba and GeeGee will be there with them, plus their Dads side of the family plus our countless friends and supporters.
If you have time and happen to see the girls please give 'em a high five or a hug for me. We're just trying to repeat the mantra that this will be over before we know it. but still... :-/
Ok enough whining, we're on our way now, Toronto-bound and down. Sunnybrook this afternoon for clinical trial bloodwork and consultation, then staying at our fave hotel close to both hospitals.
I am to call Toronto East General this evening to get my surgery time, its looking like 9am tomorrow (Wednesday) but not sure yet. If so then I will be without glasses by around 8am. Wwaahhhhhh
Scott will let our close family know how it goes (and how amusingly loopy I will be in recovery hehe!) And then my buddy Crys will start the call(text) tree. I'm practicing blogging from my mobile device so if I can tomorrow or Thursday I will. If not, please know I am appreciating your good energy and support.
I feel very loved.. thank you. xoox
Talk to you soon! Or well..whisper, or write, or hand signals? LOL I will be a thyroid gland and some lymph nodes short of a full load if ya know what I mean. ;-)
Wednesday, November 26, 2014
Pre-Operative Assessment Clinic
Friday, November 21, 2014
Chemo Brain
Though I am not taking a traditional chemotherapy (because melanoma does not respond to chemotherapy, it was not offered as an option in my treatment plan), I am indeed taking a chemical treatment that affects the human body head to toe.
Driving my beloved car is a more stressful experience than it has ever been, I have questioned my own judgement a couple of times, which scares me. My eyes get all burny feeling when I talk too much, and I have to lie down flat when the dizzies take over, which makes me angry and frustrated therefore tired and uncommunicative. I find I don't even want to drink anymore (after all this complaining about having to keep my liver clean) I feel uncomfortable with the loss of control even a little fireball or wine causes. Eeek I never thought I would say that!?!
I'm thinking this is a main reason for this blog... y'all can read about how I'm feeling, and if I repeat myself it's just because you're re-reading. ;-) I can look back on my written word to see if I'm repeating myself. Point for self-preservation - phew!
Here are just a few examples of what patients call chemo brain:
- Forgetting things that they usually have no trouble recalling (memory lapses)
- Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
- Trouble remembering details like names, dates, and sometimes larger events
- Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
- Taking longer to finish things (disorganized, slower thinking and processing)
- Trouble remembering common words (unable to find the right words to finish a sentence)
For most people, brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them might not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people don’t tell their cancer care team about this problem until it affects their everyday life."
"Studies suggest that there may be more than one cause of chemo brain, especially for the short-term symptoms. Some people with cancer have very real brain problems even though they have not had chemo. Still others notice problems when getting hormone treatments, such as estrogen blockers or androgen deprivation therapy (treatments to lower testosterone levels). For some, problems start after surgery. Along with chemo, many different things can worsen brain function.
For instance, brain function problems could be caused or worsened by any one or any combination of these factors:
- The cancer itself
- Other drugs used as part of treatment, such as steroids, anti-nausea, drugs used during surgery (anesthesia), or pain medicines
- Low blood counts
- Sleep problems
- Infection
- Tiredness (fatigue)
- Hormone changes or hormone treatments
- Other illnesses, such as diabetes or high blood pressure
- Nutritional deficiencies
- Patient age
- Depression
- Stress, anxiety, worry, or other emotional pressure
Most of these cause short-term problems, and get better as the underlying problem is treated or goes away. A few, such as depression, can cause long-lasting brain problems unless the cause is treated.
So far, there is no known way to prevent chemo brain. For some people, treating their cancer will mean trouble with thinking, memory, planning, and finding the right words."
Source and more interesting info: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/chemo-brain
Tuesday, November 18, 2014
Italy
We flew from Toronto to Frankfurt, Germany, then on to Milan, Italy, arriving on a Sunday morning. By early afternoon we had navigated our rental car to Pisa, in Tuscany. While there we just HAD to see the famous tower, and of course, sample authentic pizza in Pisa, for the kids of course. After a few hours there we got to our hotel in Florence, on the Oltrarno side of the Arno river, away from the touristy downtown core.
We noticed this little car wash while walking off the Grappa. Perfect for their little cars:
Tuesday I was on my own, and I did some extensive walking around the city following my Lonely Planet travel guide to Florence suggested walk tours (excellent - I highly recommend those). Found so many interesting things. Ponte Vecchio is still my favourite!
Back of Ponte Vecchio from a private balcony:
View Ponte Vecchio from Uffizi Gallery:
Inside Ponte Vecchio, priceless modern day jewellery:
Wednesday morning I spent at the Uffizi Gallery - breathtaking, indescribable, highlight of the trip for me. In the afternoon I found the Cappelle Medicee (Medici Chapels). After a fascinating tour of the interior of the chapels, including an incredibly close look at Michelangelo's marble sculptures 'Night/Day' and 'Dawn/Dusk' as well as some early - incomplete - sketches preserved on the walls, I dazedly wandered through the ancient jewels and treasures displayed on the lower levels. I was glad I had taken the advice of the jewel merchant behind Ponte Vecchio to see the Medici collection.
Thursday I set out on another hike, had a few errands and another cashmere pashmina to buy, then up to Piazzale Michelangelo over-looking the city. The weather was perfect for walking, sunny and warmer than March here, but not blistering hot like summer in Tuscany. I walked past Fort Belvedere, along the road where Galileo lived for a time,
View from Piazzale Michelangelo:
The famed balcony of Juliet ~ Romeo... Shakespeare:
It was torture to be so close to Venice but not have enough time to go there - next time for sure. On the way back to Milan from Verona we hit a traffic jam, reminiscent of Toronto, except with way cooler vehicles - not a pick up truck to be seen. Flights home were good as well, except that Air Canada fed us - of all things - pizza! (yuck) Wonderful trip overall, can't wait to go back!