Hi, I’m Scott. aka Michele’s Mann. With her being in the hospital again it’s fallen to me to keep everyone updated until she’s back on her feet. And I’ve had a few friends and amateur therapists tell me I should probably write about the caregiver’s journey in this cancer warzone, both for myself and possibly for the benefit of others. So here goes something.
Nobody Said It Was Easy
In January I had one job that took 60+ hours a week as a managing partner at Highforge. In February I suddenly had three jobs running 24/7. The two new jobs are managing Michele’s business and sharing caregiver duties with her parents. Ever since Michele’s diagnosis, that old Coldplay song keeps playing through my head. Nobody said it was easy / No one ever said it would be this hard. I can only imagine how hard this is for her.
She really is SuperwoMann and I find myself telling her a few times a week, “I can’t do this without you.” I mean that on so many levels.
And if there was any way I could magically take the leukemia instead, I’d do it in a heartbeat. When I tell her that, she always says the same thing, “This wouldn’t work the other way around. You couldn’t do this (handle the cancer with her grace) and I couldn’t do that (steer both businesses).”
She’s probably right about me handling cancer; I honestly think I would have curled up into a ball of voiceless rage, pain and hopelessness dealing with the unyielding desert of pain, chemicals and an unforeseen future. But every day I see her pick herself back up, put the pieces together and walk on through the desert with her chin held high and a flipped finger for anything that gets in her way.
|Michele on steroids|
So, now off to the important update on our mighty warrior princess. We’ve had a lot of bad news and some good news.
PICC Lines, Ports, and Chemo, Oh My!
First the bad stuff:
- She relapsed. The Sprycel (the magic cellular therapy drug) isn’t working and the doctors think maybe the cancer has mutated. We’ll find out more on that within a week or two.
- At first we thought it was just creeping back. But a day after we checked back in the doctors said the leukemia “blasts” were about 30% of her blood. So they changed courses to a much more aggressive chemo attack and started looking at emergency alternatives to a poorly matched Bone Marrow donor. More on this in the “good stuff” section later.
- They put in a PICC line on Friday. Her arm really started hurting where they put it in and on Sunday she was in agony. They scheduled an ultrasound on Monday but there was a fire in the imaging department so another 48 hours of pain and morphine followed before we found out she had blood clots and started treatment. It’s been a rough week to say the least.
- They installed a Power Port in her chest which also hasn’t been super comfortable. And to add insult to injury she’s getting her spinal tap tomorrow to check for any signs of cancer spreading and to inject some preventative meds into her spine. This may have the side effect of turning her into an actual superhero mutant in the future…I’m hoping her new superpower will be that she’ll be a better cook, but she’ll probably want something cliché like flying or adamantium claws.
Dorothy Hulk SMASH
- They have her on a morphine drip and steroids. So she’s off in the Land of Oz feeling powerful and angry. So maybe more like Hulk in the Land of Oz. Munchkins and nurses beware.
- The doctors are now leaning towards cord blood for the transplant. They’ve unexpectedly found a perfect match and we’ll likely be scheduling this within the next 2 months. This means there’s less of a chance of relapse or something called GVHD, but the recovery time is typically weeks or months longer because it takes longer for Cord Blood to become functioning bone marrow and functioning blood. This also doesn’t change the fact that if anyone wants to do anything for Michele, the greatest gift you can give is to sign up for www.BeTheMatch.org to save someone’s life like hers.
- In the middle of this bad week some amazing things have been happening because of our amazing family, friends and the local Orlando business community. We’ll write more about this stuff in more detail later but things like our friends and family stepping up to babysit Michele to give me and her parents a break, Big City Catering helping us with food at the hospital, and Mayor Buddy Dyer signing a proclamation to make “Michele Mann Be The Match Day” on July 27th 2014 to coincide with Camp Mann really fills us full of love and hope in these dark times.