I’ve Been Given the Gift of Time

Thank you to everyone who took the time to read my last blog post. Some emails ended up in Never-Never Land, so this time I’m reverting back to sending it from my email privately – see ya later, Mailchimp! If you don’t want to receive the blogs going forward, let me know. And if you wish for someone else to receive an email from me, send me their email address.

Thanks also to those who wrote notes or said quiet prayers for/to me. I loved them all, especially one from my sister-in-law Connie, who said that I was, “…protecting our little hearts while telling us your story.”    TRUTH!

Just so you know, you can read without responding. Totally OK. It sometimes stresses me out to have to reply to you, so if you are someone who never comments … thank you! (ha-ha)

Now on to the update. I was called to come to Princess Margaret Hospital 6 weeks before my scheduled appointment. Sounds scary, but it was more to put my mind at ease than anything else. I had blood work (…and then more blood work) and met with my hematologist there, who has been following me yearly since diagnosis. She attended the meeting with all the transplant hematologists when my case was presented. She said that there was dissension amongst the group regarding what should happen to me at this moment, but no one thought it was the right time for a stem cell transplant.

Here is the plan – they are going to increase one of my drugs to try to shrink my spleen and relieve some of my abdominal discomfort and shortness of breath. Here’s the problem with this plan…the medication (Jakafi) also drops your hemoglobin, platelets, and WBCs, and we know my hemoglobin is barely hanging in there. I will have blood work done weekly to monitor my blood counts. If my hemoglobin drops much lower than it is, they will start me on Eprex shots. Eprex is a drug usually given in the abdomen once per week to boost red blood cell production. Sounds good, right?? Yes, but there is always a “but…”.  In this case, the “but” is that Eprex comes with a host of side effects AND only works in about 40% of patients.

The second part of the plan is to start to search for a stem cell donor for me. I’ve already had blood work done, and the search has begun. When they find me a donor, I will have an appointment with the transplant team at PMH, where I will be given all the information necessary to get myself ready for the inevitable transplant. I have a feeling it will not be too far in the future … just a feeling, but…

My whole point of this particular blog is that I’ve been given the gift of time. From the start, when I received my terminal diagnosis, I was given the gift of time. We all know people who are not so lucky. People who go to the doctor and come out with no time, just a fight on their hands. I’ve had time to gather the people I love around me, clean out my closets, and take the trips. I have felt blessed by this for the entire 10 years since my diagnosis. I am also blessed to have a (mostly) invisible disease. If I don’t tell people I have leukemia (x2), they would NEVER KNOW! I personally love that. I am not looking for sympathy and the dreaded accompanying head tilt.

Circling back to the earlier topic of “Comments”, if you wish, simply write the name of someone you know who didn’t have the gift of time. Someone who had to hit the ground running with chemotherapy, radiation, surgery or any combination thereof.  Cancer is terrifying, and I feel that, although I may have it rough, I could have it a LOT worse. To everyone out there who does have it worse, my heart goes out to them and to those who love them.

“With gratitude, optimism is sustainable.” – Michael J. Fox