Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, December 26, 2008

The BEST Christmas Present Ever

My coworker friend gave someone THE BEST CHRISTMAS PRESENT EVER!!!
We didn’t know each other well when we worked in the same departments, on opposite shifts, but since my diagnosis, she’s thought of me
In MY HONOR, she signed up for the NATIONAL DONOR REGISTRY in MAY, which is NATIONAL TRANSPLANT MONTH.
While we’re on the subject, there is a routine Bone Marrow Drive in Springfield VT every May. I think it is at the Dean Center. This is where my girl went to donate. Remember this.
There was a very successful drive at KEENE STATE COLLEGE. See the article at http://keeneweb.org/newsline/2008/12/02/bone-marrow-drive-a-huge-success/
KSC is special to me, as my father, sister, and Frank are alumni, as are Tad and Uncle “Scottie.” Actually, I could really keep going here. I did spend one semester there when I graduated early from high school, and I did play soccer there my entire life, so maybe I can be considered alumni too?
Large colleges EVERYWHERE should hold drives. Stem cells are OUR health future.
In 2001, on Sept. 11 or 12th, CNR bused girls willing to donate their blood for survivors of the attacks. I, of course, piled in with my girlfriends and headed to North Shore (Hi CB). After donating my blood, I spotted the GET ON MARROW DONOR REGISTRY box, and immediately signed up.
After this, CB, my room mate, and I also went around the group of twenty girls (I think Roxy and Lindsay were in on this too) and took over their paper work to check THEIR boxes.
At the time, I had no idea there was a HUGE lack of minority donors in the registry, which is a big time social health problem for any subgroup other than “white” in blood cancer care.
The victims of Sept. 11 did not need our blood, if you want to know the truth, most were all ready dead, providers rushed to work and waited for ambulances with live victims that never arrived, but the registry did need our blood samples.
When I began my search for a donor, I received in call in JULY 2008 from the Bronx branch that I had hit as a match in the registry and would I please call to arrange MY donation.
WHOA. Imagine the shock when I told the girl that the woman who needed the transplant was me, and please remove me from the list.
THAT IS HOW SMALL THE SELECTION IS!!
If I was in charge, I’d gather my HOT girlfriends of all ethnicities, and I’d post us up at Howard UNIVERSITY, maybe during homecoming. Maybe cellular memory is a VERY REAL THING, and if you can have the smarts to get into Howard, and we need the cultural diversity in our registry, that is the kind of marrow we should be spreading around.
I could see a college tour. There are some great GREEKS out there that could take up this cause. You should see how they could “stomp” out cancer.
Anyway. . . .
So my friend who signed up in May was called in September to donate. At least, I think this is the timeline. Here is our correspondence. She tells me how it feels to be on the “donor side” of this process, and I ask her questions and tell her what it is like to be the patient:
****FROM HER TO ME****
Just wanted to let you know that WE are donating soon to a 42 year old male. "Annie" from the marrow.org "hinted" that he was from the Northeast area without saying of course!! I have my physical exam this week at dhmc and then tentatively scheduled to donate on Jan 6th via aphresis.
So this is my email address...catch me anytime! Your blog ROCKS!! We all read it often...and you have reached Fort Myers Fla now...just to let you know!!!!
I also want to see what you have to say on the use of Filgastrim (Neupogen) for healthy people in pre-donation doses for aphresis. The FDA does not approve it for healthy donors donating to strangers, but does approve its use if you are donating to a sibling....ODD eh? My general understanding is that if I have pre-cancerous cells in my body, that I will increase those as well as healthy cells---mainly WBC's.....not anywhere else in the body...so i understand anyway. Do you know anyone I can talk with about this???? Dr. West and Laura suggest that I talk with you....as you are a walking encyclopedia and medical dictionary all rolled into one!!! SOOO little lady with big heart....and gigantic spirit....TEACH ME!!!!....or point me in the right direction!!...what do you think???
So here is my ending ha-ha.....Whats the difference between a pick-pocket and peeping-tom?
One snatches watches, the other watches snatches!!!!!
I know, I know....lame...but I bet you weren't expecting it!!!!!
Email anytime...call anytime....
BLOG ON sister.....WE LOVE IT!!!!
PS-I thank you ....and so doesn't this 42 year old Man out there!!!
******FROM ME TO HER*****
Can I post a little about you?? You can write about you. I think your notes are great. This is great!
If you're all reading, are you making your broom hockey team?? I know you're in on this! It is BYOB and tailgate parties are allowed. My house is 30 seconds down the street.
I need to write a letter to my donor, and I have no idea what to say. I haven't done it yet, and I don't know why. I need help.
Let me ask my providers your questions. I'll call or email tomorrow and let you know. Let me know about posting. Much love.
*****FROM HER TO ME******
Great to hear from you!!! So I just got home from DHMC...all of my pre-testing is now complete! I passed with flying colors, but my WBC count was a smidgen high....so they will need to repeat it in a few weeks. And when i mean a smidgen, I mean 10.8 versus the 10.4 that they want. So it's a GO. I go in on January 6th and 7th....its a 2day thing as it is a man and they require more.....may he get my thunder thighs and irish temper!! AND dare I say that I was talked into a Jugular central line if needed. My veins are "iffy" and they won't really know until "D" day (what I'm calling "donation day"). I talked with some amazing people there today...they answered all of my Q's. Neupogen only affects the blood cells. My Nurse is IW, NP is BK....they are fantastic!!!
(FYI, FROM ME, both have taken care of me too! YES, THEY ARE GREAT! Go to Norris Cotton, people.)
Broom Hockey????....tell me more....I dont know much about it....but if its hockey I'm game!!! Is this the annual Z thing I have heard so much about? MAKE IT a fundraiser....sounds perfect!!!! and it has a bonus...BEER! (actually---I'm a Jack fan)!
(FYI, FROM ME, I have been a LIFELONG jack and coke girl. I do vogue drinks, but always go back to the classics).
Write anything and everything to your donor...she'll be amazed and you'll make her day! Spill it out....
Alrighty Hill....I have to go see my sister...(arent they awesome).....Have a great day.....Keep Bloggin'!!!!! You can post anything, absolutely!
****FROM HER TO ME****
Hey Hill!!!!
You're back HOME!!!!!!
So I just want to keep you updated on OUR donation.....I go into today for another round of blood tests....WHY? you ask......OH cause WE are starting our first neupogen injection on Christmas morning.....yes....as in one week from tommorrow! Then the procedure will be done on the 29th and 30th of Dec. They called me last week and they needed to bump it up eariler for the recipient.
So thats where we are at....I will keep you posted!!!!
Merry Crhistmas!!!! Love life and laugh often!!!!!!
Lots of love....

*****FROM HER TO ME******
Merry Christmas!!!
Just letting you know....WE started today!!!! First dose of neupogen is in......They take my marrow on Monday! Lets hope all goes well!!! They made an appt for central line insertion for me (as my veins are virtually not there). Then they informed me that the "dhmc policy and procedure" is that I have to stay over night if I get the central line....which just shocked me!!!
Anywho..... So WE are giving on Christmas today....couldnt think of a better day to start!
Merry Christmas!!!
Bet you all didn’t know how this went or felt. I didn't either! So exciting.
Check the link in my welcome message for more information on donation.

1 comment:

Dani said...

Hill, I would donate if I could, the only thing stopping me is I myself am waiting for a transplant, it may not be as serious, but I do need it, been waiting for the last 2 years, it's coming I just need to be patient. LUV ya, and wish I could be of more help.