Still Waiting...

I apologize if you've been waiting for an update, I've been waiting for one as well! I had my blood drawn back on July 22nd, I was originally told it could be 3-4 weeks before I heard anything. This morning I finally heard something....keep waiting!


DKMS has not heard back from the patients doctor, this could be for many different reasons one reason may be that the patient is too sick at this time to move forward with the process. The patients doctor has 3 months from the day I had my blood drawn to make a decision. Therefore, I may be waiting to hear all the way through the middle of October. Part of the update I received included this information:

If you are chosen to donate the next steps will be:

            1.         Participate in an information session

            2.         Attend a physical exam at the hospital

            3.         Donate:

 Bone Marrow OR Peripheral Blood Stem Cells

         -Receive daily filgrastim injections 4 days prior to donation. 

         -Only the first injection needs to be in a clinical setting.

These steps typically require a 3-4 weekday commitment.

Needless to say Bill and I aren't making any big plans for the next 2 months. I don't want to have something planned and keep Mr. Cancer Man waiting. If we did have plans all I would have to do is report those to DKMS and they would work around them. I know that if I was the one that was sick, I wouldn't want to have to wait any longer than necessary so I won't do that to someone else.

I was also given a list of restrictions, for the next 2 months I cannot get any new tattoos, piercings, donate blood, use a needle to take drugs not prescribed by a doctor, have sex with someone who is at risk for HIV/AIDS, have close contact with someone who has Hepatitis, and I also have to avoid the possibility of becoming pregnant as I will not be able to donate if I am growing a tiny human. Obviously this list, other than the no tattoos, is a cake walk, I'll just schedule a tattoo appointment for October 23rd :)

The email also asked that I contact them immediately if I suffer a physical injury, am diagnosed with a new medical condition, plan on receiving any vaccinations, other than the flu shot, have any dates that I will be unable to donate, or are unsure on my commitment to donate.

I would still love to donate and move forward in the process but part of me also hopes that Mr. Cancer Man is doing so well that they don't think he'll need a bone marrow transplant. Although this is pretty unlikely considering he has Non Hodgkin Lymphoma. As soon as I hear anything else I'll let you know!

Stay Healthy!

Half of the blood in my body is off for tests!!!!

I had blood tests this morning! 9 vials of my blood are now on their way to New York to determine if I'm a good match or not. I cannot tell you how much I hope I'm a good match for Mr. Cancer man, not just to be able to call myself a "superhero" but to be able to help a man and his family. Now we wait.....

Really? Are you that ignorant?

I've only been going through this process for a week now and I can't count how many times I've heard "oh wow that's super painful." For those of you that have said that to me I have a couple questions: 1. Have you ever donated your bone marrow? 3.Have you ever personally known someone who donated their bone marrow? And your friends friends friend doesn't count 4. Do you honestly think I care if it hurts or that you telling me it hurts matters? To clear this up, if I turn out to be a good match I'm doing it, I'd like to think that by doing this a little good karma will come my way or maybe this is what I get to pay back for not dying from cancer myself. Or maybe it's just a good thing to do.

I'm sure most of you have heard the saying, if you don't have anything nice to say don't say it, try following that advice. I'm not going to put a pain meter on this to determine whether I'll do it or not so you can keep those comments to yourself!

Stepping off of the soap box.....

First Contact!

On Friday I spoke to the coordinator. Since she had already received the questionnaire and was able to go over it she gave me the green light to move on to the next step! On Friday I have to go and have some blood taken to confirm that the patient and I are a good match!

I was able to find out a little bit about the patient. He is a 48 year old man who has non-Hodgkin lymphoma aka NHL. Lymphoma is a blood cancer, and there are many different types of lymphoma's. When I first heard what he had, the "non" part made me think it wasn't as bad as having Hodgkin lymphoma but that's not the case. The difference between the two are cell type. Hodgkin lymphoma usually responds very well to chemo and radiation where non-Hodgkin does not. People who have non-Hodgkin usually have to have their system wiped out and have a bone marrow transplant to have any hope of survival.

There are two different ways they may take my bone marrow (If I end up being a good match.) The first way is through donating peripheral blood stem cells (PBSC) for a week leading up to my donation I will be given filgrastim injections which will increase the number of stem cells flowing through my body. The side effects from the medication may be limited but I may experience mild headaches, muscle aches, and other cold like symptoms.  I will then have to go to the hospital where they will take my blood from one arm, filter out all of the stem cells and return the blood into the other arm. The side effects of this procedure are fatigue, headaches and muscle/bone soreness but my stem cell levels will be returned to normal within a couple weeks. The other procedure is marrow donation where I will be given anesthesia and the doctor will withdrawal liquid marrow from the back of my pelvic bone. The side effects from this procedure may be back pain but my bone marrow level will return to normal within 6 weeks. Regardless of what procedure I have I won't be able to lift Abby, or anything else for a week.

If I wanted to I could request donation in whichever way I choose. However, I don't think that is a decision that I am educated enough to make. I want the patient to have the best possible chance at survival so I will donate in the way that his doctor requests.

There are not any hospitals in Nevada that perform donations so I will have to go to another state to donate. DKMS pays all of the traveling expenses for me and a companion. My coordinator said the closest hospitals to Nevada are in Oregon, Denver, and Berkley. I asked if I would be able to go to New York or New Jersey since I have family there and she said absolutely! We'll figure out where I'll be having it done after the blood tests come back, assuming that we are still a match.

How it All Began

Back in May of 2009 Bill was deployed overseas so I watched alot of TV! One night a story came on about Rihanna, she was heading up a bone marrow donation search for a little girl named Jasmina Anema who was fighting for her life against leukemia. The story brought me to tears and it was right then that I went online to DKMS and signed up to be a bone marrow donor.

A couple weeks later I received a packet in the mail with information and a kit to take a cheek swab and send it back to them. As soon as I could I sent my cheek swab in and honestly didn't think I would ever be contacted. According to DKMS only 1 in 200 people on the registry are ever contacted as a match. Doctors from all over use the DKMS registry to find donors for their patients and unfortunately they do not all find donors. We can change this by getting as many people as we can added to the registry!

Tonight I sat down on the couch, grabbed my computer and checked my email. I saw a message with the subject "Bone Marrow Donor: Important Update" before I even opened it I assumed it was your typical email asking me to update contact info. Boy was I wrong! The email came from a Request Management Coordinator at DKMS in the email she explained that a doctor somewhere believes that I am a match for a leukemia patient and it is imperative that I contact them as soon as possible. At the end of the email it stated "It’s critically important that we hear from you-even if you’re unable to donate" Not Donate?!?!?! I couldn't even imagine saying no to saving someones life! Regardless of how old the patient is, that's someones baby and I couldn't even imagine having to find a donor for my own daughter, of course I'm going to move forward.

As soon as I told Bill what was going on I called her! Of course it was 8pm here and I was calling New York so it was 11pm there, I left a message and returned to the email. In the email the coordinator sent a bunch of information as well as a 12 page questionnaire. It basically covered all of the typical health questions. They wanted to know what medications I was on, hospitalizations, if I've been to Africa, have HIV/AIDS, bleeding problems and any other major health and travel history. I filled out all of the paperwork, scanned it and emailed it back to the coordinator! All I could keep saying to be was "I may really be someones real life super hero!"

To say I'm excited about what this may mean is an understatement! I still have to talk to the coordinator, get some more blood tests done as well as a physical examination to make sure all is good to go but, someone may end up living a long wonderful life because I was a bored military wife one night two years ago!

I thought it would be nice to blog about this whole experience in hopes of letting people know how the process works and getting more people to join the registry. Hopefully I'll have more for you tomorrow!!!