Wednesday, January 28, 2009
Hurry up and wait!
Welcome to the inagural post of my blog. Hurry up and wait. Hurry up and wait. I feel like this is the story of my cancer journey. Evidently, MD Anderson has found 3 potential donors that are 9 out of 10. What that means is that there are 10 antigens that they look for in a donor. They have found 3 people that are 9 out of 10. The next step is to search the umbilical cord registry. If they don't find a 10 out of 10 (the ideal situation), they will look at the 3 donors and decide which one is missing the least important antigen and go from there.
As far as my treatment, I am still on the list to receive the new lymphoma wonder drug. The target start date is Feb. 24th. My onc seems OK with this because my disease seems to be pretty stable and not going willy nilly all over my system. If we find a 10 out of 10 donor pretty quickly, and we need to pull the trigger, then I will get a more conventional, standard chemo. Either way, I really don't care which one I get. I'm just ready to get this show on the road. Doesn't this cancer know I have things to do?
I had the privilege of speaking to the Houston Junior League (I am a proud member) about my journey. My friend Catherine recorded it for me and I've been trying to upload the darn thing on Youtube for the past two days. It keeps telling me that it is too big. I KNOW that there are other videos bigger than that. Isn't technology wonderful???
Several people have been asking about how they can be tested to see if they are a match. This brings tears to my eyes every time I think that someone is willing to do this for me. It is amazing how God works. Just when you are having a crummy day, He comes along and places someone wonderful in your life that is willing to go through shots (after ALL the needles, I still hate shots) and make that sacrifice for me. Here is the donor 411:
Here is the complete version of being a donor. I hope this answers everyone's questions but if not, please email me directly at firstname.lastname@example.org. I know that some of you are getting caught in the voice mail trap. I have a call into my coordinator to eleviate the problem.
If you are a registered bone marrow donor, you do not need to get tested because you are "already in the system". However, if you don't mind, please call the center where you were tested and ask that they fax your paper work to Stacy Kerr, my transplant coordinator. Her fax is 713-745-1285.
There are actually two routes you can go to get tested:
1. You can register as a bone marrow donor. You log on to www.marrow.org and enter the registry. The testing and registration is free. However, the results take a little longer. Also, by going through the registry, you are a registered donor and may be called as a match for someone else.
2. You can call LabCorp at 800-533-1037. This service lets you be tested for friends and family.
A. If you want to cut through the red tape, the cost is $150.00. Some insurances may still reimburse you for it or you can use your Healthcare reimbursement account (which conveniently started 6 days ago!). Should you decide to go this route, my diagnostic or CPT code is V59.02 . They will ask for this.
B. You can also go to your doctor, tell them you want to get tested for a friend and your doc can write the order for you. They will give you a doctors order for a low resolution typing. You will need to ask them when your results will be in. Call them on that day or after and ask them to fax them to my coordinator Stacy @ 713-745-1285. They will not send you the results, they send it to your doctor. This way, it should go directly to insurance and you won't have to pay anything. However, please call your insurance to verify this. It can be tricky and I would hate for anyone to get stuck with an outrageous bill. When you do talk to your insurance to find out what information they need and I will be more than glad to get it for you if they need more than my diagnostic code from above.
If you are a match, this is what it involves:
1. Ten days of shots to boost your stem cells
2. you will most likely have to do blood work after that so they can look for the markers that indicate you are producing stem cells
3. they will hook you up to an anphresis machine. Basically, it's like a transfusion. They take blood out of one arm, put it in a cylinder that spins it at a high speed. All the stem cells come to the top, they scrape them off like cream on top of milk, and freeze them. This process takes maybe 2 or 3 times. It is totally painless. The only thing is your get cold but they have wonderful heated blankets for you and if you have to go to the restroom, you have to use a bed pan. Out of all the things I've put my body through on this journey, this is by far the easiest.
The shots, blood work and procedures will all be paid by my insurance. The only out of pocket you might incur is if you decide to go through LabCorp. When they tested my sister, they mailed her a kit, she went to her own doc and mailed it back. It's pretty simple.
I know that I'm going to find a donor and kick this thing once and for all. Please feel free to pass this to anyone who was inadvertently left off.
1. You do not have to be the same blood type I am. I can also have my donor be male or female (although I really hope I don't grow a beard if my donor ends up being male. Ha!)
2. The maximum age to donate is 79.
4. Teens can donate but parents will have to go with them and give consent.
5. Anyone who has cancer in the last 5 years or any autoimmune disease is not eligible.
6. You do not have to live in Houston to be tested. However, if you are a match for me, you will need to be in Houston for 7-10 days to collect the stem cells. We will gladly put you up at our house and/or help out with the accommodations/travel expenses.
7. If you have already registered with M.D. Anderson for another friend or family member, you should be in the system. However, if you could make a call to let them know they have your permission to look at your tests to see if you are a donor for me, this might speed the search/elimination up.
8. LabCorp. vs. Registry- this is a very personal decision that only you can make. I have to have some treatment before my transplant so time is on my side. The registry is free and could help more than just me. However, you are making a sacrifice and with LabCorp, you do have more control over who gets your stem cells.
9. If you are currently breastfeeding, you need to ask your ob/gyn about getting tested. We are looking at doing the actually collection and transplant in the April/May area if we have a viable donor. I don't think you can donate while you are breast feeding but might be able to atleast get tested. Again, I am not a doc (although I feel like an amatuer oncologist at times!) so please clear it with him/her.
Some of you have asked if you are a registered organ donor, are you in the system. It is my understanding that organ donor is totally different from a bone marrow donor.
I think about all the things I'm thankful for- that it is me going through this and not my children, that I have such an amazing support system, and that I have the best medical care in the world, etc. I am also thankful that not once have I lost my faith in God. Somehow, I have not once gotten angry with Him or felt abandoned. I know He is always with me. Even in my darkest hour I can feel His presence.
God bless you all! I hope you have enjoyed reading my first post. There will be many more to come!