Sooooo …. It’s been a full year since my last update. I haven’t written in a year mostly because there was nothing to say about my medical condition. My blood work had been my typical “abnormally-normal – for-me” and I was feeling really good.
I did sneak back to work in August 2020 but I didn’t tell you mostly because I didn’t want to worry you. We had no covid patients in our hospital at that time and lots of PPE and I missed my coworkers greatly! Fast forward to 2021 and things couldn’t be more different in our hospital (except for the fact that I still have awesome coworkers?). I do still feel safe personally but WOW – so.many.sick.young.people. GET YOUR VACCINES.
Anyway …. 2 weeks ago I went for my routine bloodwork thinking nothing of it and even forgetting to check my results until late in the evening. I was shocked to see a WBC (white blood cell) count of 57. My WBC counts are actually the one value reported on my blood work which I can count on to be normal. I first thought that maybe a mistake was made but then, on closer inspection, I realized that a lot of my numbers had changed and not for the better. I try not to worry about things until I have a reason to worry but let’s just say – I was worried.
The next day my hematologist called me herself and said “how fast can you get here”. I left the house very quickly after having a very confused-Ethan move 2 cars so I could get mine out of the garage and a more confused Ella left wondering where the heck I had gone in such a hurry!
Dr. Lee met me at the hospital and expressed her concerns about the fact that my blood work showed that my myelofibrosis had potentially transformed into AML ( acute myeloid leukemia ). We always knew I was at an increased risk for this happening but I never really entertained the thought of it ACTUALLY happening. A diagnosis of AML would be super-duper-bad for me.
****PAUSE (for those of you who are now thinking “oh no”) – this story gets better!!!!
I had a bone marrow biopsy (ouch) and a ton of blood work. Dr. Lee started me on a drug called hydroxyurea which works to break down the huge number of WBCs in my blood. They have to be removed because otherwise my blood becomes thick and sludgy and we don’t want that.
Dr. Lee sent me on my way saying that she’d be in touch as soon as she knew anything – and, true to her word, she had her nurse call me later that afternoon to say that based on the blood work that had come back thus far I should make sure to start taking the hydroxyurea. It gave me comfort to know how thoroughly she was keeping an eye on me but it also scared the shit out of me in that I was thinking “uh-oh, things must look BAD!”.
A sleepless night ensued. In the morning I called my sister Angela whom I think almost had her bags packed into her car to drive across a covid-infested country to come and rescue me! Besides Angela (and Kevin of course) I only told Sarah and Steve (we were having a garage visit and I decided to share) and a few coworkers as I had to take a shift off of work. If I didn’t tell you it was because I didn’t want to worry you. Angela wonders why I don’t want to worry people but I don’t. Take it or leave it – it is just the way I am!
Back to the morning after my biopsy …. Dr. Lee called at lunchtime and said that something’s not right – all numbers are indeed NOT pointing in the direction of AML. She was very confused by this. Another concern was that my myelfibrosis had progressed ( as it is a progressive disease) but she said that happens more slowly – there are usually warning signs that this is coming and my previous bloodwork had not been out of line (for me). So, a confused doctor is not what you want, but a phone call that says “you may not have AML” IS indeed what you want! She was still waiting for more results to help her figure me out. She had an appointment for me to meet with her the following Tuesday with more blood work of course- when you have a blood disorder you just can’t get away from having blood work done.
I spent the weekend checking things off my to-do list while trying to calm my fears. I cleaned closets that were already cleaned ( covid=lots of clean closets in JoJo’s house), gardened and may have spent some time on-line shopping. Sarah said, “I understand buying a laptop and AirPods but I’m not quite sure why you needed 2 new pair of shoes!”. What can I say, sometimes a girl just needs new shoes!
On my Tuesday appointment Dr. Lee didn’t have a lot to report. She was still confused. She was still wondering- if it wasn’t AML then what was it? My WBC had come down to 42 ( still exceedingly high as my friends in healthcare know). My hemoglobin was holding above 100 (big risk of it dropping with the hydroxyurea). My spleen was big and juicy – not what you want from a spleen. (When your bone marrow stops working your spleen starts doing the job of making blood cells and mine was working overtime).
More blood work scheduled for Friday and Dr Lee had plans to reach out to Princess Margaret Hospital, where my hematologist/oncologist is located, to get their opinion. She was also still waiting on genetic tests from my blood work that can take a few weeks.
I was stuck in no-man’s land- trying to think positively but knowing something was wrong. Luckily, Ella had the week off of school and, as those of you who follow me on Facebook know, we spent the week driving around looking for new GF hotspots! What fun. I love that girl’s company!
Started to feel a bit crummy – fatigue, nausea, headachy, super itchy. Could be the result of the new drug, could be the big-ole-spleen, could be the shitty blood I was carrying around/ lack of sleep/ poor appetite / etc, etc.
I made the decision to work Sunday night. Dr. Lee left that decision up to me. Although my WBC was high I was not infectious or any more immunocompromised than I already had been. I wasn’t sure how tired I would feel but after a truly BUSY night I felt OK and was glad to have gone. I saw many people my age, some younger and some older, all struggling to breathe and I did my best to provide comfort, caring and concern.
Blood work: Tuesday, Dr. Lee: Wednesday. And she had an answer!! The genetic tests had come back and showed that I have CML (Chronic Myeloid Leukemia ). I already had one rare blood disorder and now I have another. You are also not supposed to be able to get them both at the same time. She said it was about a 1 in a billion chance. (And of course it had to be me!). She had never seen it before.
She had reached out to PMH and the specialists there had only ever seen 3 cases to which I said, “3 is better than none!”.
The good news about CML is it is treatable. I have to take a medication called dasatinib and I will need to take it daily for life. My blood work will eventually go back to normal … well that is yet to be seen because of the complicating factor of my myelofibrosis. That is the unknown factor in all of this. My doctor at PMH wants to see me and I hope she has some idea how this will affect me going forward. No appointment yet – stay tuned.
The relief I felt at getting this diagnosis was palpable. Kevin is like “ you are the only person ever to be happy to be told they have leukemia!”. Happy, no, but after having my life pass before my eyes (quite literally) the week before, anything that wasn’t an AML diagnosis was welcome. I was also happy just to have an answer. I do not like things left hanging or unanswered questions … not many people do I suppose.
So, going forward, I am going to continue working as long as I want to/or am able to work.
Dr. Lee is filling out applications for the dasatinib as it is super pricey and we need to find some funding for it (like upwards of $10,000/month pricey! holy moly).
Blood work is ongoing – 1x/week at the moment.
Princess Margaret Appointment TBD.
Will wait out this covid virus so I can get some longed-for hugs and a trip to NS.
Your job – get your vaccine and send positive vibes my way!
Positive vibes, love and light to you
❤️❤️❤️