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Navigating the Middle

through adolescents, menopause, aging parents & other flying debris

Month

July 2016

Dear Donor,

Regardless of your faith, gender, sexual orientation, race, education or income level, you are more like me than anyone else in my family.

Source: Dear Donor,

Days -6 & -5 : While Working on My Tan…

I didn’t write last night. Apparently, high doses of radiation can make a person sick. Coupled with the fact that the A/C in my room chose the most inopportune time to stop cooling and less than desirable hospital dinner, last night did not go as desired.

I had intended to write that Wednesday (Day -6) and Thursday (Day -5) would be fairly identical days, with radiation therapy beginning around 7:30 am., when an escort shows up with a wheel chair and blankets. Whenever I leave my room, I have to wear a mask for my protection. So I imagine I must look like a little old peasant lady being rolled about.

When I enter the radiation room, I give my name and birth date, although it is definitely the type of place where everybody knows my name. Next, I’m helped out the wheel chair and onto a hard, plastic table,covered with sheet and a very thin mat. Since my therapy includes a 20 minute “burn” on both sides, I like to start on my stomach where my face is squeezed into an uncomfortable plastic mold with cut outs. (Seriously, if anyone reading this could invent something better, you’d be rich!) Therapists  help position me by placing blocks to protect my kidneys and lungs and aligning my prison tattoos (i.e., the kind you make with a straight pin and ink. Don’t ask me how I know this.) I have to lay still while the table slowly moves across the beam of light. Afterwards, I flip over, and the process is repeated on the second side. I do this twice daily.

Laying there makes me think of a tanning booth.

Full disclosure: Everything that I know about tanning salons, I learned from the teenage-horror movie, Final Destination 3. There is a scene where two besties, Ashley and Ashlyn have a terrible mishap while lying in tanning beds. Once the beds’ temperature exceeds 350 degrees, the light bulbs pop, skin bubbles, and…you get the picture. Guess I need to change my thinking.

Second disclosure:Everything I learned about prison tattoos, I also learned from movies. Although I can’t prove it.

Tomorrow…chemo begins (my own personal horror movie).

Day -7: The Conditioning Begins

This is Day -7, as in a countdown to launch my Allogeneic PBSCT.

Translation: a procedure in which a person receives blood-forming stem cells from a genetically similar, but not identical, donor. In my case, my donor is a  guy from Europe. PBSCT stands for peripheral blood stem cell transplantation. That’s what the doctor ordered.

This countdown period is the conditioning phase that prepares my body for the actual transplant. All this means is that starting today and continuing seven days, or to Day Zero, I’ll be getting in shape for my new immune system. Today I got a drug called Palifermin, which decreases the incidence and duration of severe oral mucositis from the high doses of chemotherapy and radiation therapy that I am scheduled to receive. Basically, this stuff is a type of keratin that prevents the lining in my mouth and stomach, as well as my skin from tearing up due to my conditioning workout.

Next, the interventional radiologist placed a Hickman catheter in my upper right chest, near my collarbone. It’s sometimes called a Central Line, and it is larger than a regular IV. This is the super highway by which I will receive my stem cells. It can also stay in longer and be used more times than my veins would ever be able to endure. All-in-all a good thing, but not tonight. Tonight it hurts.

The last “big” part of my day included going to radiation oncology to get marking for my TBI or Total Body Irradiation. If it sounds scary, it is. At least it’s painless. There was a bunch of laying around and having radiation therapists draw on me with green sharpies before pressing stickers onto my torso. Seriously it was like kindergarten – color on stuff you aren’t supposed to; put stickers where you shouldn’t; and take a nap.

By 3:00 p.m. there wasn’t much left to do except move into my hospital room. Think back to moving into the dorm, sans the greeting committee and the roommate. (On the transplant ward, there are no shared accommodations. But I digress…) The room is fairly sterile, so you make it your own with a colorful comforter, coordinating shower curtain and rug, posters and the like. There is no “Move-In Night Madness” just more blood draws and vitals.

I did get to meet my nurse, Augustine (e.g., Saint Augustine, the Doctor of Grace), although I strongly suspect that meeting my floor mates will be a completely different story: no wild parties, no sharing of snacks, no late-night pranks.

Good thing…I’m exhausted.

Dear Donor,

We’ve never met, but in a little more than a week, we will be intimately involved. Tomorrow, I will be admitted to the hospital where my stem cells and immune system will be completely destroyed before your stem cells will get to work on the repair job. It’s hefty work, to be sure, but this is what you signed up for.

My question is WHY?

What made you decide to add your name to the National Bone Marrow Registry to Be The Match for a complete stranger? Me.What kind of person does that? You. Willing to sacrifice a part of yourself so I have a better chance to live.

Maybe you’re one of those people who just wants to do good in the world. Or did you register because someone you loved needed a transplant and you desperately wanted to help?

John 5:13 teaches us – “Greater love hath no man than this, that a man lay down his life for his friends.” I know this is different, but I do see parallels between your actions and what Jesus did. I didn’t know Him when He died for me, and I can never repay Him.Likewise, I won’t be able to repay you either.

But I’d like to try to convey how eternally grateful I am for the decision to swab your cheek and add your name on the donor list.  And when you got the very real call informing you that someone needed your stem cells, you said “YES” again. You could’ve backed away;  you were under no obligation to go through with it…but you did.

So THANK YOU!

Thank you because I want to KEEP living.  I have a family that loves me; a husband I want to grow old with; and children I want to see grow into adulthood and beyond.

Thank you because depending on the source, only 67%-76% of African Americans find a match through the National Registry. Even within my own family, my half-sister was not a match, and my full-sister was only a half match. You, dear donor, are a full match…a 10/10. Regardless of your faith, gender, sexual orientation, race, education or income level, you are more like me than anyone else in my family.

I may never know WHY you did it, but I know a few things. I know that you are a selfless person. I know that despite the inconvenience and minor discomfort, you refused to walk away. I know that people love you because you love back.

For the entire law is fulfilled in keeping this one command: “Love your neighbor as yourself.” (Galatians 5:14)

Thank you for living out the Word of God and for sacrificing a part of yourself to help me.

Humbled and forever thankful,

Dee

 

 

 

 

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