Hope is the thing with feathers that perches in the soul – Emily Dickinson

Hello friends and family – if I missed sending you the link to my first post please don’t hold it against me … can you say overwhelmed  (and slightly forgetful – seriously – I missed a whole group of people ?)?!!

Since my last post in April I’ve officially turned the corner from:  

Scared-to-Death,  to: I’ve-Got-This!  

I spent the entire day at Princess Margaret Hospital on May 14 seeing doctors and having tests done. The feeling in the pit of my stomach during the drive in to Toronto was worlds apart from the feeling of almost-glee I felt on the drive home! 

The cure for both myelofibrosis AND CML is a stem cell transplant (SCT). I am trying to avoid that for as long as possible as it will mean a 1 in 5 chance of dying during the procedure and, if I survive the transplant, it will mean at least a year of recovery – a very rough road to travel. My hematologist in Oakville had warned me that the specialists at PMH may start the process of SCT. Thank goodness they were both in agreement that an SCT was not needed at this time. If my CML can be controlled with medication AND my MF remains fairly stable they feel that I can put off a SCT for the time being! PHEW!!

Blood work is ongoing, weekly at this point. My WBC (white blood cells) are back to normal. Unfortunately my hemoglobin has tanked a bit to below 90 (stay tuned for a blog post entitled  “ Why You Should’t Run to a Code Blue When Your Hemoglobin is 89!” ?). The doctors hope my hemoglobin will self-correct – if not, there are medications they can give me to boost it back above one hundred. 

 I’ve started the dasatinib which will be the medication I am on for life. Initially it gave me constant headaches and gastrointestinal issues (no further details required!) but those seem to be settling out. There are lots of side effects of the drug but not everyone gets everything and I am hoping for as few as possible (unfortunately my hairbrush is jam-packed-full of hair falling out of my head  ?). 

Kevin has taken over trying to find someone to cover the cost of the dasatinib. Our insurance company first said “yes’ they’d pay for it, then sent a letter saying that first I had to try, and fail, a first generation drug used in the treatment of CML. I have NO interest in doing that!. It turns out there are a lot of options when it comes to finding help paying for very expensive medications in Ontario. Kevin tries to explain it to me but all I hear is “ Trillium…deductible…blah blah…20%…etc etc”. I’ve asked for an excel spreadsheet ( Sarah ? ). 

So I feel quite good now – a zen kind of feeling has come over me. I’m extremely thankful for so many things but more so for so many people who are in my corner cheering me on. 

I loved the comments on my first blog post on Caring Bridge. I didn’t dare respond as everything seemed to trigger a new email from them! 

Heidi – I can always count on you for a heartfelt comment and, “Josie” by The Glorious Sons now has a honoured spot on my “Walking Songs” playlist! 

I will respond to all comments now that I have control over my own site and for god’s sake – if you receive too many emails from this site TELL ME and I will fix it … or I know a guy that can fix it (let’s be honest!).

My biggest thanks has to go to Kevin who has tolerated me the past month (ok – the past 30 years!). He made no comments about my spending, my redecorating rooms … again. He is in full support of me stopping work whenever I feel the need to do so. AND HE HELPED ME GARDEN THIS SPRING!! For some reason this has been a contentious issue between us in the past and I end up just doing it myself but I am having quite a bit of shortness of breath especially with bending and picking things up. He was game to help me whenever I wanted help. He moved plant pots (over and over), spread mulch and dug here-cut there. I am thankful and my gardens are lovely.

I am hopeful. 

 

PS photo creds to my brother-in-law Doug Clair, wildlife photographer extraordinaire!