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,
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).
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.
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,
Before checking out my thoughts, please watch the video that inspired this post.
I answered the question before I watched the video. – No, I would not let him give me a tattoo. The man has no hands. To be specific, he has no arms either.
I attended high school with a guy who didn’t have hands, and he was quite the artist. So if you’re thinking that THAT’S the reason I wouldn’t let this guy give me a tattoo, think again. My reason has nothing to do with him and everything to do with me.
I don’t like tattoos. (THERE, I said it; rather, I wrote it!)
I LIKE people who LIKE tattoos; I LIKE people who HAVE tattoos; and occassionally, I like tattoos themselves. It’s like graffitti for the body. YOUR body. I don’t think I’d let the footed man (or a handed one) draw graffitti on MY body. Not that I haven’t EVER imagined such a scenario because in truth, there have been two occassions.
The first was when I lost my breasts to cancer. My plastic surgion offered a tattooed areola as part of the reconstruction. After giving it some thought, I decided against it. Cancer makes you tired of hurting. I didn’t want to hurt any more.
The second time I considered it was more recently, after chemo took my eyebrows. I was in a MAC store, buying a brow pencil when I met a woman who had tattooed eyebrows. They looked so realistic, I thought I might give it a try. That was before I decided that tattoos were not something to TRY, despite what tat lovers may claim. I chickened out of that one too.
Like I stated: It’s me.
There’s just something about having ink injected into my skin, that makes my skin crawl. Friends I know have no problem to committing to the deed – over and over again. When I think about it, the only people I know who have a single tattoo are the ones who either (1) regret getting it in the first place (i.e., they were young, intoxicated or both); or (2) ones who haven’t made it back to get a second tattoo.
I tried to imagine being one of those people. So I visited PINTEREST for inspiration, and I started following a board dedicated to mastectomy tattoos. Some of the work was hauntingly beautiful, especially when I learned the meaning behind the art. http://www.pinterest.com/personalink/mastectomy-tattoo-ideas/
Afterwards, I asked myself the question that I started with at the beginning of this post: ” Would you let him give you a tattoo?”
My sister got on my case the other night when I told her that I wouldn’t be joining her in DC for our annual girls’ weekend. Her expectations were not unwarranted. We try to take a sister-trip every year, one that usually revolves around her work as an insurance agent. However, due to serious illnesses on both our parts, we’d missed the last two years. Suffice it to say, I was really looking forward to our time together. But you know what they say about best laid plans.
After quickly mentioning that her conference would be in DC this year (while downsizing her home; running a business; and being a single parent), details from my sister dried up. It wasn’t until she literally forwarded her hotel confirmation email, that I noticed the dates: dueling schedules which meant that I would be on the West Coast, dropping my Number 1 son at college, during Stephanie’s visit to our area. While I hate to miss out on the late night talks, socializing, and enjoying one too many glasses of wine together, this could be one of the last mother-son activities that Chris and I will ever share. EVER may seem like a really strong word here, but he’s moving on. I’m the one who’s being left behind, along with his dad and two younger brothers.
I remember being his age, barely able to contain my excitement over leaving home to pursue my new, grown-up life. Back then, I didn’t know there was a difference between becoming an adult and being a grown-up. And being a grown-up means you make grown-up decisions, like committing to seeing your firstborn through his transition to college, even if he is 18.
Since Stephanie also has a teenaged son, I knew she was kidding when she teased, “I can’t believe you’re chosing to take your kid to college instead of seeing me! What kind of WEIRD PARENTING is that? Just because he’s going to school in another country…”
I might not have been a semi-finalist in the NGB (okay, that’s not really a thing), National Geographic Bee, but I am certain that Seattle is in the U.S; I told her so.
But Stephanie just responded, “Um. It may as well be another country.” (Spoken like a true Texan.) She had a point. For about the same distance, (give or take 80 miles and a student visa) he might as well be going to school in Ecuador! And that’s on another continent and below the equator!! THANKS SIS! I hadn’t considered any of this before talking to you. I feel much better now.
I also finally understand why some moms delivered the cartoon-eye-popping-stare when I told them that Chris would be leaving our mid-Atlantic home for the Pacific Northwest. “You’re going to let him go that far away? Could he go any farther away?” were the two most commonly asked questions, followed by: “Aren’t you going to miss him?”
Well, yeah…to all inquiries. (1) He was allowed to apply to any university, provided he was able to secure scholarship money, which he did; (2) He could have gone farther away…like Ecuador (see previous paragraph); and (3) You’d miss your child if he went away to school, regardless of the distance.
Perhaps that was the point some of my friends were trying to make. They couldn’t fathom the thought of having their college kid so far from home. I get it. But we are the parents who attended college across the country (Jeff) and who moved to Hawaii after graduate school (me). In our WEIRD PARENTING world, our son moving 2,300+ miles away seems like a natural choice.
Besides, I am confident that we have done a good job raising him. He will make mistakes, just like we did. And he will figure things out; he’s a smart kid. After all, we trusted him enough to fly across the country (without us) for college tours. I look forward to visiting his campus for the first time when I deliver him there later next month. (WEIRD PARENTING, right?)
And while I might not feel the need to squeeze out every living, breathing moment with him before he takes off, I do want to enjoy this rite of passage before he pushes me out to make room for his new life. He’s a teenager, so the pushing is well underway. Like labor, it’s painful but hopefully seeing your beautiful baby boy turn into a caring, responsible, kind and productive man helps erase the pain.
So as much as I love spending time with my sister, and I really do, I won’t be able to join her this year. I’ve got more WEIRD PARENTING to do.
Day 1 and I feel like I’ve been here before – asked to write about “who I am and why I’m here.” In the grand scheme of things, I should answer the second question first. I am here because I believe that everyone has a story. That story matters because what people really want, what we ALL really want, is to feel validated. We want to know that we matter.
…which leads me to answer the first question.
I’m a woman with a desire to share life’s journey as a wife and mom, believer, cancer survivor, warrior, conqueror. I have already managed to capture some BIGGIES in my blog “Losing a Lifelong Friend.” Now I’m ready to tackle the challenges staring me squarely in the face: menopause, fading beauty, a college kid, aging parents and whatever else is hurling toward my head at warp speed.
In short, I’m getting ready for the second half. My Grandma Katie will turn 106 this year. So according to my calculations, I’m just getting started. Join me.
I hate mirrors.
To be precise: I hate my reflection in the mirror.
It wasn’t always like this.
BEFORE, I’d do a mirror “drive by” – you know the kind where you pause to check your hair, makeup, or make sure that you don’t have spinach in your teeth. Now I’m trying to remember the last time I looked in the mirror and liked what I saw. You’d think it was the hair. Correction: you’d think it was the bald scalp staring back at me. Men and women, complete strangers, can’t seem to stop themselves from offering:
“I like your look.”
“Are you in treatment?”
“You have a beautiful head.”
“Is that by choice or for medical reasons?”
“Do you have cancer?”
“Wish I could wear my hair like that.”
Nope. The lack of hair on my head isn’t the problem. Chalk it up to being a black women.
I know, I know – you’ve heard (or may have first-hand knowledge) that black women share a complex history with our hair. Part of that history is being able to sport just about any hairdo imaginable: straight, wavy, curly, kinky, natural, relaxed, locked, twisted, cornrowed, braided, weaved, and yes – bald, the latter style popularized by a 1970’s Ebony Magazine cover featuring Issac Hayes and model, Pat Evans.
I like to think that the bald head works for me, as well. In my mind, I am edgy, a rock-star! I’m so confident that I can walk around with a small purse AND a bald head. I don’t have time for insecurities. LOOK AT ME. I SLAYED MY CANCER! Everything is laid bare for the world to see. I am the ultimate wash-n-go-hair-girl, with no complaints about having a bad hair day.
But as much as I’ve written about it, this actually ISN’T about the hair on my head. It’s about the other hair: my MIA eyebrows and eyelashes. I am now acutely aware that I look like an alien without facial hair to frame my eyes. Whenever I go out, I have three choices:
I’m fairly comfortable with #3 if I am lunching with friends, or #2, when escorting my son to the bus stop. But ask me to glam it up, and my security fades. I have had to “pass” on formal events, in part, because no matter how much makeup I wore, or how pretty the gown, I felt like an imposter, an alien in this body.
After several weeks without eyebrows, my appearance is beginning to affect my quality of life. I am tired of waking up, looking like someone sneaked into my bedroom and took a giant eraser to my brows. Even my MAC brow pencil isn’t getting the job done these days. Imagine catching your reflection in the mirror, only to see a small part of your brow missing. You wonder: who else saw me like this?
I would never judge others by the standards to which I hold myself. I need a plan other than hiding.
Two life-threatening diseases that lead to a bone marrow transplant and a snappy Buttkick List
through adolescents, menopause, aging parents & other flying debris
Let me tell you Justine's story
My thoughts about homeschooling, health and fitness, being an expat, kids and just life in general. My personal Lifestyle Blog!
travelling the world while (trying) to look good
Food does not need to be fancy to be celebrated
Reaching for a positive outcome
a lifestyle blog by jasmine eclipse
Discovering the Gift
The Art and Craft of Blogging
The Underwater Adventures of PT Hirschfield (click a story below)
A Good Blog is Hard to Find
** OFFICIAL Site of Artist Ray Ferrer **
This WordPress.com site is the bee's knees
Read our Mission. Find out how you can help us adopt James.
"Don't Quit Your Daydream!"
Chronicles from the Mama Duck - Raising teenagers...family...faith...