We had a standing appointment with my Oncologist to get my blood levels tested and check in with my body after this last round of new chemo. Interestingly, most of the meeting turned into a conversation about life and death, and the style in which I'd prefer to bridge the gap.
Essentially, whether or not I'll choose to have the Bone Marrow/ Stem Cell Transplant has now come into question for me. After this talk with my doctor—who I know considers me like one of his children and gives me the same advice he would give them—I feel I'd only choose to go through with it if there are great odds of me surviving (the transplant itself). For those odds to be good, I need to meet two criteria:
I need a "full match" Donor, and I need to be in complete remission. We won't know how this chemo has affected the cancer until after I get another dose (next week) and then wait the standard four-week clearance period. I'll then get re-scanned and we'll see how far into remission the cancer has or hasn't progressed.
The second conversation—which took place immediately after the first, as we were dazedly walking through the parking lot of the Cancer Center—was with the Bone Marrow Transplant Specialist.
She called to tell us that out of the entire national Bone Marrow Registry, there are currently no full matches that would work for me. (They match people on a 10 point scale. I need a 10-point match. There are some 8 pointers out there, but those won't cut it).
So this is it. My call to arms. The time has come. Please consider joining the national registry, in hopes that you might be the match for me! And please help me spread the word. ANYONE could be the match, but people with a Persian/American background, like I am, would be especially desirable candidates.
Joining the Registry is easy and fun! Their website is very comprehensive and tells you everything you need to know about how to find out if you're a match (cheek swab) and what would happen if you did become a donor.
Onward to get a blood transfusion. Mad love to my peeps.
First, your wedding pictures are beautiful. What a lovely couple you are! I've forwarded on this post to friends in the US in the hopes that some more donors will come out of it. I'm not stateside, sadly. Best wishes.
ReplyDeleteI'm going to join the registry today. Love you, Kia.
ReplyDeleteJoining right now and asking everyone I know to do the same. <3
ReplyDeleteWishing you only the best and the brightest, Kia! Will go and check now to see if there is a regitry here in Mx. Much love + light, Joseph
ReplyDeleteGoing to join and will spread the word.
ReplyDeleteI love you, Kia.
Registered! And got my Persian American friend to register too! Love, Jason
ReplyDeleteRegistered!
ReplyDeleteI registered and have rallied the other Millwood kids.
ReplyDeleteDear Kia bean! First, congrats on your knot tying, you lovely married woman you. Second, I can't believe my episcleritis hinders me from registering, but autoimmune is autoimmune. I will sound the call and get some peeps signed up that you may find your 10. xoxo, sjones.
ReplyDeleteKia, I sent your appeal for possible matches to our Persian community in central North Carolina. About 400 recipients, so I hope it converts to some registrations.
ReplyDeleteGood luck,
Jahan
Kia - Just saw the message from Rachel Audino. I don't check that FB account enough. :/
ReplyDeleteRegistered on the site, but am going in to the Visalia blood center today to give a sample (instead of waiting for the kit in the mail). Fingers crossed!
Hi Kia - My name is Sarah, I heard the story from CityBeat. I registered (though I gave a cheek swab at a charity event last year, and it didn't find me in there). I want to be on the national registry, but I'd also like to contribute to your candidate/cheek swab collection. I read on the website:
ReplyDelete"However, if you want to be tested only for a specific patient, you will need to have your testing done privately. You can contact the patient's transplant center or transplant doctor for more information."
Is being on the national registry enough or is there more that I can do to try to put myself in the running for you? Thanks and good luck finding your perfect 10.
Hi Kia,
ReplyDeleteMy name is Melodi and I'm a Persian-American blood donor from southern California. My family forwarded me your story, and because I'm type O negative (universal donor) and I haven't donated in a while, I think I might be a good match. I registered for being a donor just now, but because that process takes several weeks I wanted to contact you and give you my information in case you need to find a personal donor faster than that. Please contat me soon and let me know if you want me to come up to Stanford this weekend or next and get tested to see if I'm a match :)
I'm at 805.234.0816 an Melodinikou@me.com
Best wishes, and good luck :)
Melodi
I came across your blog wen a friend of mine re-posted it on facebook. You are such a strong and inspiring woman. I, too, am Persian-American and joined the registry. I am also going to list your blog on mine so that hopefully more people will have the opportunity to read your story. Know that your words are reaching more people than you can even imagine. Stay strong!
ReplyDeleteyes! joined!
ReplyDelete