It’s Been One Month Since You’ve Looked at Me
How fitting is this that my last blog entry was on June 12, 2014. Almost exactly one month ago today. So much has happened in that one month. Where to begin?!
The main thing is that they have decided to do a Cord Blood Transplant on me. Yes, that’s from a baby’s umbilical cord. The umbilical cord blood is rich with the blood-forming cells that give patients like myself hope for a cure. We were lucky enough to have found a perfect match there! Another cool piece of trivia is that this month is actually Cord Blood Awareness Month.
I am happy that Scott took over the reigns for a bit to keep everyone updated on the progress while I was in the hospital. To say a lot happened during that time would be the understatement of the year! I was admitted in the hospital this past time on Friday, June 13th and was released on Monday, June 30th.
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| Hello chemo, bye bye hair again. |
And being out of the hospital this time has left me in the most pain I’ve been in since this whole journey began back in January. The mean cancer devil was doing everything in his power to bring me down the last month and it’s been a nightmare. From an infected Picc line to blood clots to nurses who didn’t believe my pain levels and steroids that made me question my sanity and forced me to overuse my middle finger on hapless victims. The worst side effect to date has been severe face-swelling and a terrible skin rash that started on my chest but quickly spread down throughout my body and on my face. I feel like a mixture of Quasimodo & Joan Rivers. Women that voluntarily get chemical peels, please answer me one thing…why?!
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| 1) Constant Cold Water Compresses for relief. 2) Worst skin peel ever. |
“What Do You Want to Do?”
I believe there are things that we do in our early years that shape us into the people that we become later in our lives. You don’t always know how important something is in the present time, but only years later does it become cemented as an essential part of us. For me, it was dance.
I’ve danced my entire life since I was 4 years old and that was my one and only passion growing up. To be able to express what I was feeling through the art of dance was unlike anything I had ever experienced and I absolutely loved performing. When I was 13, I was particularly excited at a competition because I had a solo lyrical number. I had the stage to myself. The adrenaline was powerful and addicting. It was showtime.
I floated onto stage doing my dance number that I was so proud of and then, I’m not sure what happened. I just blanked out and forgot my next step. I froze. And for whatever reason, in that very moment, I couldn’t even improvise. I didn’t even know my name. A sea of eyes were staring at me in silence.
I’m embarrassed to admit, I bolted. I just ran off stage.
There were hushed whispers, “What happened?” “What’s she going to do?” “Do we run the next number?” My music continued playing for a few odd seconds before officially coming to a stop (in my mind it sounded like the cliche of a loud record scratching). My dance instructor grabbed my shoulders and asked, “What do you want to do?”
Suddenly, there was no question in my mind. I had no choice. I would not give up. In the middle of the most embarrassing moment of my life, I decided to face my fear and I went back out into the light. The music started over…
With tears in my eyes, I finished without a misstep. I left the stage the second time so fast that I didn’t realize I got a standing ovation.
Sometimes when I get scared now, I think of what that little girl did and know that I can face anything.
It’s Getting Real
As we’re getting closer, I’m reminded about what this little girl has got to accomplish. My transplant doctor’s appointments, tests, and procedures start on Monday, July 14th and will continue throughout the next few weeks. I will then be admitted back into the hospital on Friday, July 25th for chemo and radiation. Once my body is all prepped and ready to go, we do Day “0” of transplant. I am not going to lie…I am very scared. And I pray every day that I am given the strength for this challenge.
Camp Mann: A Michele Mann Fundraiser
Scott and I have both mentioned how very lucky we are to have such an amazing support system since this all started back in January. I will say it again and again….I do not know where we would be without the financial aid that has been shown to us through way of GoFundMe Donations, in kind donations, and Fundraisers. I can’t say enough about all the amazing people that have contributed to and will be attending Camp Mann. If you haven’t heard about it, it’s a family fun event held at the beautiful Cypress Grove Estate House on Sunday, July 27th from 5-8pm. Cookout, games, dunktank, music, and more is sure to make the event a great summer hit.
Please, if there’s only one thing you donate, make it sharing Be The Match with everyone you know. They never found an adult donor for me. The more people that know about this and join, the greater chance there is that we can all save so many more lives.
In addition to all of the fun, be sure to check out the Camp Mann Facebook Event Page so that you can see all of the silent auction items that will be available for purchase. Mayor Buddy Dyer and The City of Orlando announced that Sunday, July 27, 2014 is officially “Be The Match for Michele Mann Day.”
Seriously, who’d’ve thought a little girl from rural Virginia would deserve so much attention? Although I will be in the hospital, I will be there in spirit and can not wait to see the turn out and everyone’s beautiful and smiling faces (on video at least).
I’ll be seeing you soon…
This is bittersweet since this is now officially my final blog before the transplant takes place. And after that it may be a long time until I’ll be able to report back. Hopefully Scott can keep everyone posted.
You all have kept me going. Have kept me sane. Have given me hope when I almost ran out. And have opened my eyes to how precious life is each and every day. I hope that I was able to touch you and do the same for you even if just slightly. Please remember to smile often, pray harder, hug tighter, love easier, forgive quicker, and laugh as much as you possibly can. It’s not in the moments that we’re measured by but by the way we spend them and with whom. Our human relationships is what makes this life beautiful.
I leave you with this. Yesterday I had my some of my close friends laughing with this colorful remark: “I really want this transplant to work because I want to hang out with you shit heads just a bit longer.” And that’s what it’s all about.
Best of luck with your transplant Michele. Many prayers for you and Scott.
Thanks Viv.
my husband and I intend to register with bethematch at a local drive soon but we'd like to see if we are a match for you specifically first. I read on their website that to do that you usually need to test privately at the patient's transplant center. Do you know anything about this? Any guidance you can offer would be appreciated. We'd like to help if we can.
Hello, Thank you for offering to do this. It is much appreciated! However, we're on a strict timeline at this point and a cord blood transplant is definitely the route the doctor's are going for me. I do love that you and your husband are registering with Be The Match. That makes me happy and I pray that you can help someone else like me one day!