October, already. 2017 has been a total blur. 5 months ago today I walked into Northwestern Medicine as a new patient. I was seeking a second opinion. A fresh set of eyes and brains to hear my story, and make sure we were on the right path. I was hopeful I would be told to keep on, keepin' on and my mind would be put at peace. I was uneasy with my shit show not attaining "undetectable" status after 12 months... and then REALLY lost my mind when we hit the 18 month mark and things started going the wrong way.
It was only 12 short, crazy, emotional, whirlwind weeks from that initial appointment until the day I was admitted for a stem cell transplant. I will never talk poorly of my oncologist of 18 months, nor his place of practice, BUT, I will say I have never looked back. I, especially, don't miss driving past the coffin and monument store just a few blocks from the hospital. I mean, really? In all fairness, transplant was on the back burner since January already. It took those fresh set of eyes to run their (what seemed like) hundreds of initial tests and discover the oral chemos I was blowing through would NEVER get me "undetectable" and my condition was way more serious than anyone ever thought. Talk about going with your gut.
I'll never forget the day I was told I was going to transplant. June 2nd. (I'll never forgot many things!!). It was a glorious Friday. Blake, Kendall, myself were out garage sale-ing with friends. My phone rings, of course it's my new oncologist. "Rhonda, its Jessica" (love her use of first name basis. Not out to impress anyone) "do you have a couple minutes?" I really wanted to say, "Nope! I'm out having fun! Call me with shit show crap Monday!" But, I didn't. "Yeah, sure. What's up." My friend went on with all the kids so I could chat.
"The test results just keep rolling in and the most recent finding we've learned has us very concerned. In fact, I've reached out to Mr. CML in Seattle already concerning you. We have discovered in addition to your mutated CML you have Myelodysplastic Syndrome (MDS). More specifically, MDS Monosomy 7, or the deletion of chromosome 7, which puts you at very high risk for acute myeloid leukemia. Potentially, you could have to fight two leukemias."
Silence.
I could recall about 1% of this conversation later when telling Jason, but, knowing what I know now, I know exactly what she said to me that day.
"I would like to see you next Wednesday. We will talk about what all of this means. You tell me when you want to come in. I'll make myself available."
"No, you are going to tell me what all of this means right now."
"No, I would rather speak to you in person. Face to face."
"I will come in next Wednesday. BUT, I'm not hanging up without knowing what you have to say."
"You need a stem cell transplant. And you need it ASAP. As in the next 4-6 weeks. The transplant team has been informed and your case is expedited. We will talk specifics next week but the search for a donor is already in motion and the team will be calling to get your siblings info as we want to test them first."
She talked me off a cliff, we hung up and I caught up with the clan. My friend offered her very level headed advice and we carried on with our day. I felt like I was moving in slow motion the rest of the day. I had a major breakdown that evening telling Jason what I learned. I had an out of town aunt and uncle coming in for a visit the next day. Mom and dad were having everyone over to visit and hang out and I was really looking forward to that. (We don't get Minnesota visits too often... never really... 😜 Yeah I said it!!!) So I told Jason none of this would be discussed until next week. As far as everyone is concerned, things are good. I was so sick of talking, thinking and living this shit show. It consumed all of my life and it was bringing me down. So we lied through our teeth the rest of the weekend...
And here we are today, day+61. My 2 month birthday. Another uneventful doctors appointment this morning. We discussed making some changes to some medications, specifically my anti-rejection. Depending on what we learn after my bone marrow biopsy in two weeks (😧), he may start to wean me off it. Kind of a scary thought, but, I'm sure he knows what he's doing. I'd say, "kind of a scary thought, but he wears the white coat!... but, I can't because I've never seen him in his white coat! Another one out to impress no one. Walks in with his jeans and button down. The director of the stem cell program. Love it.
I asked him today when I can catch a plane to Hawaii?? He laughed and said, "whenever he buys your ticket!" Pointing to Jason. "If you wanted to go away for a short trip, say a week, I'd say in 2 months. But, if you're talking a longer trip, two, three weeks, after the new year and I'd buy travelers insurance just to be safe." Doc, a vacation for me is usually a week or shorter. I'm not hopping planes to Africa for 3 weeks to photograph wildlife from my private safari... But, I digress! Hahahahaha!!! In all seriousness, he, I'm sure, deserved that trip. Could you imagine hopping patient to patient, day in, day out, shit show after shit show??? I see where going to stare at elephants and lions could be a perfect escape.
Sometimes I feel I deserve a white coat. 😜😜 I can talk a mean game of chronic myeloid leukemia (CML), myelodysplastic syndrome (MDS), chromosomes, genes, cells, complete blood count (CBC's), FISH studies, BCR-ABL results, etc. Not bad for a marketing and journalism degree! 😉 But, trust me, I wish I couldn't. I wish I was as oblivious to all of this as I was up until 11:45PM October 14, 2015 when this hellacious nightmare unfolded.
Anyone new to my story can read my first blog entry HERE.
In the wake of an awful, senseless tragedy this week, I will leave you on this note. I was laying with Blake at bedtime when I thought he had fallen asleep. Out of no where I hear his little boy voice say, "Mommy, I prayed for you everyday you were in the hospital because I was scared." 💓 I locked it up and told him I prayed everyday I would get better so I could get back home in no time, just like I promised. Gosh, this stuff is so hard. But, just like one of my favorite little cheer up gifts says, "Let your faith be bigger than your fears." And that we shall continue to do.
Be well!
Love,
Rhonda Kay
PS. Biopsy in 2 weeks. If the lucky driller Dr drills down 3 times, comes up with nothing each time, and in a panic says to the lab tech, "I can't get it! It's not working!" I promise y'all will get to hear my sailor mouth firsthand being screamed from downtown Chicago, because, no. Just no. 😜 Keep your ears peeled.
