Tuesday, October 07, 2008

I Promise, It Won't Hurt

Doctors always say that, don't they? I have to say, after 5 years as a cancer patient, and 3 before that with 2 slipped discs in my back, I've only felt actual PAIN one or two times. Discomfort, pinches, nausea, dizziness, sure. But true pain, only a couple of times. One of the least painful things I've gone through has been receiving peripheral bone marrow cells from an anonymous donor who is part of the National Marrow Donor Program. As the patient, I spent five days in the hospital receiving chemotherapy. On the sixth day, at about 9:00 PM Eastern Time, I received my new cells. There was no ticking IV monitor, no anaesthesia, no sick weak patient (me) lying on a bed the way you may have seen it on TV. I sat up in a recliner, the nurse hooked the bag of "blood product" to my chest portal that access the veins, and it slowly dripped into my system over 45 minutes. That's it! I went home 24 hours later!For the donor, it may have been a little more uncomfortable, but not painful. He or she is probably not used to all the prodding and needle poking that I consider every day events, so it would have been that level of discomfort. To extract the cells from the donor, he or she would have taken daily injections of Filgrastim, also called G-CSF or Neupogen, for about a week, which would stimulate stem cell production in the marrow and send the cells into the blood stream. The cells would be extracted via an intravenous line (IV) during a process called aspherisis that takes about a day of sitting in a recliner and watching TV! That's it! No surgery or "procedures"! No pushing into the bones with a big needle, like you may have heard of in the past! This has been the standard protocol for about 4 years, making it a much easier process for the donor than it had been in the past.The easiest part of registering to be a bone marrow donor is the initial test. It's a CHEEK SWAB! (No, not THAT kind of cheek!)It's the same way the TV police shows get DNA from a suspect. We can all handle that! All registering does is put your name and information into the system. Marrow donation is not based on blood type, they accept people age 18-60, and people with Type 2 diabetes are eligible candidates. World wide, the majority of people registered to donate bone marrow are of Caucasian descent; there is a great need for those of African, Asian, and Native American descent to register.Similar to a blood drive, bone marrow drives are often hosted by corporations and charities. I Googled "Boston area bone marrow drive" and got over 60,000 hits, of course. But, the first 11 were all drives coming up in the next 3 months! Before attending a bone marrow drive it is important to contact the people running it to see if you need to bring any paperwork or know certain information about yourself. You will be asked to fill out a questionnaire that will help the donor recruiters determine if you are an eligible candidate to be a donor. Depending on how the drive is being organized, and the state in which you live, there may be a small fee for the initial screening process, which is covered by health insurance in most states. The fee is not for the Marrow Donor Program, it is for the lab that conducts the tests.
I encourage you to look into registering as a potential Bone Marrow Donor.
You can even register online! If you were the patient, wouldn't you want someone to be there for you?
NOW for the GIVEAWAY question of the day... You MUST answer the question in the Comments for THIS POST to be eligible. You also must have a way for me to contact you when you win. You do not have to have a blog to enter, and you can be from anywhere in the world! You may have to read an earlier post to find out the answer!
Although I am cancer-free, I am actually sicker now than 2 years ago. What is the side-effect disease that has developed after the transplant?

47 comments:

mannequin said...

If I understand correctly Elizabeth (and I've read and I'm so sorry), it's the GRAFT VS. HOST disease?

I also need to tell you that I've put your button in my sidebar for two extra entries. Hopefully I'll have time to blog about your story before the week ends.

I hope you are holding up well today Elizabeth. {hugs}

Jewelgirl said...

I think the side effect disease might
be anemia. To answer your questions
I don't normally sell my jewelry but
you questions may have changed my
mind about that.

Terrie's Lil' Piece of Serenity said...

Elizabeth, You are a very amazing person. I am truly honored to be able to have you as a friend. I'm am sorry to say Graft-versus-host disease (GVHD) is a common complication after an allogeneic transplant. But, I'm not sure that is what you are referring to. You are in my prayers.
Terrie

Jewelgirl said...

duh I am sooooo wrong.... Diabetes
is the secondary disease.

Smilingsal said...

You have diabetes because of the prednisone.

Liz said...

I think I found it - graft vs host disease?

I have always thought about it but never actually did it, maybe i will finally register to be a marrow donor.

Ronda's Rants said...

I just love what you are doing Elizabeth...I have learned so much and I who am very afraid of needles...am going to register because it is the very least I can do!!!

Bridget said...

At first I thought of diabetes but that didn't seem right. Are you referring to the Graft vs. Host?

Bridget said...

This was a wonderful and very informative post! It never occurred to me to Google Bone Marrow drives.

Justine said...

Unfortunately, you're now suffering through something called Chronic Graft Vs. Host disease. Waaaaaaaaaaaaaaaaa!

Justine :o )

Kathy said...

You have chronic graft VS. host disease where your new donated bone marrow isn't recognizing you as it's new home. Thank you for the information on how bone marrow is extracted these days. I have a friend who was a bone marrow donor for her sister more than 10 years ago and, for her, it was a painful process. She had to undergo the whole hip extracting twice as the first extraction was lost. Her siser died a year or two after the transplant. I'm glad the procedures are now less painful.
Kathy
bigfamily8 (at) yahoo (dot) com

Katy Lin :) said...

Graft Versus Host Disease is the side-effect disease. Hope you're having a great Tuesday!

French said...

Heavy doses of prednisone mess with the bodies ability to control the levels of glucose, ie diabetes it can also have an affect on the kidneys, ie renal failure. Prednisone is wonderful and terrible at the same time, heavy doses can also effect the mental abilities and cause lapses in memory.~~~French;)

~Tara said...

Graft vs host disease...

Tiffiney said...

I really need to get on the donor list..i have been wanting to do it for a while now...thanks for posting this! :)

ohhollyf said...

My cousin also deveopled diabetes, after recieving a set of lungs.

Neabear said...

I am hoping I am getting the right answers for your questions. The answer for today's question is.....Graft vs Host Disease Cancer(GVHD). I am learning so much from your experiences.

Melissa said...

Hi Elizabeth,
I believe the answer is Chronic Graft vs. Host disease.

Ed said...

What a wonderful post, I thoroughly enjoyed reading about it and all the information you gave out. Happy Pink Saturday, sorry I am late, but I have been through everyones blog who posted ..

Nathalie Brault said...

If I read correctly I'd say diabetes would be the secondary disease to your illness. I'm sure am learning a lot and I'm gonna be subscribing to your blog. Thanks by the way for this generous giveaway and your time and your warmth. Blessings to you

windycindy said...

Hi, You contracted a GVHD after your transplant. Prednisone was given to you in high does. This caused your body to get Type 2 Diabetes. My brother was a juvenile diabetic. My mom had Type 2 and now my older sister does. Before her illness, she has donated her platelets for a little girl that was in her first grade class. Take care, Cindi
jchoppes[at]hotmail[dot]com

Nancy said...

Hi Elizabeth, You now have Type 2 Diabetes.

Nancy said...

Hi Elizabeth-sorry-I thought about it. You developed graft vs host disease. That caused you to take the prednisone-then the diabetes.

Coloradolady said...

I believe it is diabetes, developed from the medication you have to take.

These are great and informative post.

Patty said...

My guess is graft vs. host disease.

maggie said...

The disease is Graft vs Host disease.You are doing a great job in getting so many of us informed about the disease and all that goes with it. I am going to check into being a donor.

noreen said...

Chronic Graft vs. Host disease

I forgot to post the first day with your first question, my girls need something and I never got back to the computer, the answer was Hodgkin's Disease, a blood-borne cancer

I also want you to know that I have been on the bone marrow registry since 1994. i have never been asked to donate but I would if asked.

Rose C said...

Diabeties....

I just found your blog via Virginia. Thanks for bringing awareness to Becoming a marrow donor. It is veeeery important to me as well, for reasons that have touched me personally.

THANK YOU! Your blog is well said, and makes becoming a donor sound like a piece a cake! (as it is!)

Pat@Back Porch Musings said...

Hello Elizabeth
This is my first time commenting on your "birthday" posts. I'm learning so much!

I believe the answer is, you developed Type-2 Diabetes.

Virginia said...

You have graft vs host disease.

More hugs!

janetfaye said...

Type 2 Diabetes is the side effect.

janetfaye (at) gmail (dot) com

blueviolet said...

You developed Graft vs. Host Disease.

I feel like I know you now because I've read so much of your blog looking for the answers. You are terrific!

doot65{at}comcast[dot]net
Elizabeth

Life on Bonnie Lane said...

It's graft versus host disease that is the side effect disease you are now battling!

Kady
kady_39@yahoo.com

lindanuts said...

graft vs. host disease

I am learning alot about you, Elizabeth.

Nifty Adventures into Denmark said...

If I am correct it would be diabetes. I have learned so much from your blog. The comics made me laugh :) On a side note I am giving you a blog award. I will email you more details. Even though I just found your blog, you are truly inspirational.

mub said...

Graft vs. host disease.

I need to do some research into the bone marrow registry here in The Netherlands. They have really strange requirements for certain things (blood donor req. here are way different than when I was in the US), but you've inspired me to check into it!

Bunny B said...

The side-effect is graft vs. host disease :(

bunnybx at gmail . com

CanCan said...

The side-effect disease that developed after your transplant is Type 2 Diabetes.

:(

onlycancan at hotmail dot com

princessesindisguise said...

The side-effect disease you developed is Chronic Graft vs. Host Disease.

~K
princessesindisguise(at)yahoo(dot)com

La Memster said...

According to your last post, you developed graft vs. host disease about 9 months after the transplant. SOunds awful! :-P

Coloradolady said...

Well, I don't know if I can submit another guess, but after much searching...I am thinking this is the right answer

Chronic Graft vs. Host disease

If not, and I can not enter again....sorry. just delete.

Carolyn (Harbor Hon) said...

Elizabeth,
I would have to say graft-vs-host disease involving the liver and/or lungs, or severe elastosis of facial skin. Missed you while I was gone and have to catch up with your posts. xxoo

jeanne @ Inspiring Ideas said...

Hmm, thought it was the graft vs. host disease? I suppose that led to the diabetes. I pray you start to feel better!

RobynsOnlineWorld said...

Diabetes.

My parent's neighbor also had a bone marrow transplant and I was really surprised at the process when she had it. Amazing how some things are so simple and some are so complicated.

Susie said...

I did this when my mom went through the transplant for breast cancer. It couldn't be easier!! Great information for people who have not!!

Vicki said...

Such an easy thing to do now. Thanks for the information! A friend in Missouri flew to another location in order to donate marrow (I believe that's what it was). There were some risks involved for her, but she was an exact match so there was no way she wasn't going to do it.

Lisa said...

Your health is the most important thing in your life. If you don't have your health you have nothing.