It's true. Our first ginormous prayer has been answered. A perfect match. And he's a sibling...
It was Blake's 5th birthday and he chose pizza for dinner. I left for the 30 second drive to pick it up and I wasn't even to the end of my street when my phone rang. The transplant team was calling. Really? At 6:30 on a Tuesday evening? I always seem to get these phone calls when I'm out doing something...
"Hi Rhonda, it's Lucy. I'm calling in regards to the donor search. Jerry is a 4/6 match which, while not a perfect match, is still good. But, Greg is a 6/6 match! We have found a perfect match for you!! And it's a sibling match! That's SO amazing!!!" I burst into tears. She let me have a few minutes and pull myself together. "I hope these are happy tears!!" "Yes, they are. But this also means shit just got VERY REAL." "Yes. Yes it did."
I was in Rosati's parking lot for 15 minutes by the time we finished chatting. We hung up, I got out of the car, looked up to the clear blue sky, pointed and said "THANK YOU!!!!!!!"
I later called both brothers, my mom and dad, and obviously told Jason when I got home. Jason goes, "So did Greg say yes?" ummmmmmmmm.... "I guess I didn't ask! I told him! And I assumed!" hahaha!!
Things are very expedited. With a perfect match found, we can now proceed. I will be having a stem cell transplant within the next month. I have been put in contact with some people who have gone through this process. One woman was a fresh 60 days out when I phoned her... and I interrupted her having a glass of wine on her deck. LOL! Another woman is 7 years out. One gentleman a year out. A woman I chatted with a few hours ago is 5 years out. All have one underlying message - stay positive and keep the faith. Something I like to believe I'm doing great at so far. At this point, I'm done reaching out. Done talking about it. Done thinking about it. Done. It's time to write my own story.
I can't even tell you how many people have tagged me in posts, texted me, phoned me, messaged me, emailed me... stating they have registered to become a donor. I have lost count. You have no idea what that means to me. To think someone I encouraged to sign up could potentially get a call someday to give someone a second chance at life. THAT is amazing. And I thank you.
In case you need the link to register, click HERE!
The donor (😉) will be starting his process next week. I will be scheduled for several tests, including a bone marrow biopsy (lame) very soon. Then a date in which I will be admitted will be set. I am told to expect to be in the hospital for 4-6 weeks. This is going to take a village. Your continued prayers, positive juju, thoughts, whatever, is so appreciated. Now is when the real fighting happens. And I am more than ready to KICK THESE SHIT SHOWS!!!!!!!!!!
My Dad hilariously stated "When you start enjoying Captain and Coke's, we'll know it worked." Greg, here's to a lifetime of Captain and Coke's on me! It's the least I can do.
Be well. Enjoy this holiday weekend!
Rhonda Kay
xoxo
Friday, June 30, 2017
Monday, June 12, 2017
We Have A Plan...
I've fired up the laptop a few times before now to write this post. Stared at the blank white typing space and closed it back up. I guess I wasn't sure how to approach this one...
I'm still not sure how to approach this one...
There's no sugar coating it. There's no beating around the bush. There usually isn't when it comes to me anyways. I'm a straight shooter. So here goes...
I will be having a stem cell transplant.
Last week we learned that I do not, in fact, just have CML. In addition to CML which has mutated and decided to be extra lame, I also have MDS which stands for More Dumb Shitshow (smile. laugh. it's okay). MDS = Myelodysplastic Syndrome = blood forming cells in the bone marrow are damaged and are often responsible for low blood counts. Can be a "watch and monitor" thing or can escalate and turn into Acute Myeloid Leukemia. I have two shit shows. Double lame.
Right now the MDS is in the "watch and monitor" stage but there's really no question as to what the "plan" we've been waiting on has come to. So here we are. The whole transplant process has been expedited as we don't want to risk anything turning into anything else and giving me another hurdle to jump.
Bring it on. The sooner we get on this, the sooner I can begin to engraft, begin to bounce back, begin to heal, begin my new life free of cancer. These oral chemos I've been on for 20 months are treatments. A stem cell transplant is a potential cure. And because those words were muttered to me I am at total peace with this. I have to be. It took a week of major freaking out, reaching out to a stem cell transplant support group on Facebook, talking with a few respected, qualified individuals, and lots of prayers. But, I got there.
And I need you to get there too. I will have no part of poor me why me pity parties. Positive energy ONLY!!! Am I scared? Obviously! Cancer, leukemia, MDS, chemotherapy, stem cell transplant... them are fightin' words. They are big, scary, intimidating words.
I highly encourage y'all to educate yourselves on the process if you so desire. The whole process totally blows my mind. Here's a quick run down: be matched to a donor, donor does conditioning injections to boost their stem cell production, stem cells are harvested out intravenously and collected in a bag. I will be admitted into hospital, 5-7 days of traditional high dose chemo, transplant day (day 0) stem cells injected into me. The actual transplant itself is anti-climatic. Then it's recovery. The first 100 days are crucial. The first year is full of caution and one day at a time. Boy, did I just make that sound easy or what?!
This is the stuff you read about it. The stuff where you hear of somebody that knows somebody. The stuff you never think will happen to you. Well, congrats! You all are now that "somebody." And I am that "you".
All those times I've posted and shared about becoming a donor. Just a simple swab of your cheek can be someone's lifeline. I hope I have now convinced you to request a kit. You could be my lifesaver. Simply click HERE if you so wish to get on the registry. I thank you in advance. Truly.
I've never shared this before but I have a distant cousin, who's much younger, who I've never even met. We were diagnosed with two different leukemia's on the same day. I can't wait to meet this sweet 8 year old someday. Little does he know, he's my hero! He, himself, had a stem cell transplant earlier this year. What a warrior.
So where do we stand??? I am being closely monitored through blood work and weekly EKG's as I did change oral chemo meds to fight off the mutated CML while we wait for a donor. That's mainly what's happening right now. The search for a donor is on and expedited. My parents and brothers are being tested this week. If not matched they move on to the registry. That's right! Jerry has to get poked!!! BAHAHAHAHA!!!!!!! He asked if he could be put under for it. BAHAHAHAHA!!!!!!! If only Greg could do his poke!!!! Now THAT would be a fun blog post to write about. But, seriously, thank you brothers. Love ya dearly and here's to hoping we share the same DNA! Cheers!
Life goes on. I'm just carrying on with my life and trying to keep things calm and normal until the show begins. My motto is usually "go big or go home" but, I certainly didn't mean for that to happen for this shit show. That's for sure. Time to put the dukes up and BEAT THIS CRAP!!!
Thanks for praying and the positive energy.
Be well,
Rhonda Kay
XOXO
I'm still not sure how to approach this one...
There's no sugar coating it. There's no beating around the bush. There usually isn't when it comes to me anyways. I'm a straight shooter. So here goes...
I will be having a stem cell transplant.
Last week we learned that I do not, in fact, just have CML. In addition to CML which has mutated and decided to be extra lame, I also have MDS which stands for More Dumb Shitshow (smile. laugh. it's okay). MDS = Myelodysplastic Syndrome = blood forming cells in the bone marrow are damaged and are often responsible for low blood counts. Can be a "watch and monitor" thing or can escalate and turn into Acute Myeloid Leukemia. I have two shit shows. Double lame.
Right now the MDS is in the "watch and monitor" stage but there's really no question as to what the "plan" we've been waiting on has come to. So here we are. The whole transplant process has been expedited as we don't want to risk anything turning into anything else and giving me another hurdle to jump.
Bring it on. The sooner we get on this, the sooner I can begin to engraft, begin to bounce back, begin to heal, begin my new life free of cancer. These oral chemos I've been on for 20 months are treatments. A stem cell transplant is a potential cure. And because those words were muttered to me I am at total peace with this. I have to be. It took a week of major freaking out, reaching out to a stem cell transplant support group on Facebook, talking with a few respected, qualified individuals, and lots of prayers. But, I got there.
And I need you to get there too. I will have no part of poor me why me pity parties. Positive energy ONLY!!! Am I scared? Obviously! Cancer, leukemia, MDS, chemotherapy, stem cell transplant... them are fightin' words. They are big, scary, intimidating words.
I highly encourage y'all to educate yourselves on the process if you so desire. The whole process totally blows my mind. Here's a quick run down: be matched to a donor, donor does conditioning injections to boost their stem cell production, stem cells are harvested out intravenously and collected in a bag. I will be admitted into hospital, 5-7 days of traditional high dose chemo, transplant day (day 0) stem cells injected into me. The actual transplant itself is anti-climatic. Then it's recovery. The first 100 days are crucial. The first year is full of caution and one day at a time. Boy, did I just make that sound easy or what?!
This is the stuff you read about it. The stuff where you hear of somebody that knows somebody. The stuff you never think will happen to you. Well, congrats! You all are now that "somebody." And I am that "you".
All those times I've posted and shared about becoming a donor. Just a simple swab of your cheek can be someone's lifeline. I hope I have now convinced you to request a kit. You could be my lifesaver. Simply click HERE if you so wish to get on the registry. I thank you in advance. Truly.
I've never shared this before but I have a distant cousin, who's much younger, who I've never even met. We were diagnosed with two different leukemia's on the same day. I can't wait to meet this sweet 8 year old someday. Little does he know, he's my hero! He, himself, had a stem cell transplant earlier this year. What a warrior.
So where do we stand??? I am being closely monitored through blood work and weekly EKG's as I did change oral chemo meds to fight off the mutated CML while we wait for a donor. That's mainly what's happening right now. The search for a donor is on and expedited. My parents and brothers are being tested this week. If not matched they move on to the registry. That's right! Jerry has to get poked!!! BAHAHAHAHA!!!!!!! He asked if he could be put under for it. BAHAHAHAHA!!!!!!! If only Greg could do his poke!!!! Now THAT would be a fun blog post to write about. But, seriously, thank you brothers. Love ya dearly and here's to hoping we share the same DNA! Cheers!
Life goes on. I'm just carrying on with my life and trying to keep things calm and normal until the show begins. My motto is usually "go big or go home" but, I certainly didn't mean for that to happen for this shit show. That's for sure. Time to put the dukes up and BEAT THIS CRAP!!!
Thanks for praying and the positive energy.
Be well,
Rhonda Kay
XOXO
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