Nancy's Update

Seriously, I'm now three years post-transplant. Yay!!! Although the time has passed by quickly, I remember when time stood still. I'm so thankful to be alive and thriving. I'm so grateful for every moment of every day. And yet, I'm constantly reminded of those in search of their one match (Krissy Kobata), of those who have relapsed and are facing very hard decisions/times (Michelle Maykin), and of those who we cherish in our memories every day (Dale, Joe & Erika)

So, if you haven't already registered to be a potential life-saver, please do so immediately. You can also help by attending A3M's Starnight:

A3M Benefit Dinner & Concert Tony Award Winner, Lea Salonga, returns to A3M's stage to perform her 2009 “Inspired” concert: Broadway hits, Disney classics, new selections. Sunday, October 18, 2009 at the Cerritos Center for the Performing Arts TICKETS ON SALE NOW! Concert-only ticket: $47, $57, $67, $87Call (800) 300-4345 or http://www.cerritoscenter.com/

Dinner & Concert Package: $177 Call (888) A3M-HOPE * A3M@LTSC.org * AsianMarrow.org

For more info contact A3M at http://www.asianmarrow.org/

For those of you still following my counts (and thank you for that!):
as of 7/1/09:

wbc - 3.1 (normal 4.0 - 11.0)
rbc - 3.89 (normal 3.8 - 5.2)
hgb - 12.7 (normal 11.5 - 15.5)
plt 96 (normal 150-350)

My chemistry panel is all within normal limits! Life is good. God is good.

Have a happy and safe 4th of July.

love, Nancy

I'm so sorry it has taken me so long to post about my follow-up with the endocrinologist at the City of Hope. Well, apparently I have three nodules in my thyroid. One is bigger than the others and after being talked to by two different doctors, I learned that the standard of care is to biopsy any nodule bigger than 1.0 x 1.0 x 1.0 cms. Well, I have one that measures 1.1 x 1.3 x .6 cm. The doctors really wanted to perform a needle biopsy last year, but said it hadn't changed. So, it was decided that we'd follow up this year. My nodules haven't changed in three years and there are no new ones. My TSH counts are within normal limits, and even though there is a history of thyroid disorders/cancer in our family, the fact that the nodules are stable is a good sign. The doctors were more insistent this year about performing the biopsy, but I can't understand this since there has been no changes and no problems with my thyroid hormone levels. So, I said I'd follow up again next year and we'd take it from there.

Last year, the doctors were even throwing around words like "Hashimoto's Disease" or "Graves Disease." Without a clear cut diagnosis, I know not to jump the gun or worry too much. So, I chose to put those words in my memory bank for now and continue with life.

Believe me, if there were changes and more nodules I'd be the first to say "do the biopsy." But, I can't wrap my brain around the possibility of more illnesses right now and since it didn't seem urgent, I turned down their very generous offer.... I feel like I've been through so much already and may feel more curious about my thyroid after I'm off the anti-rejection medications. I even asked my doctor this now seemingly stupid question: "If there were some cancer in my thyroid, wouldn't the chemo from my transplant taken care of it?" Don't any of you think that is reasonable to at least consider? Seems perfectly possible to me (of course, I'm always incredibly hopeful and optimist!)

So, that's the story behind my thyroid. Not to worry. We'll keep monitoring but for now, I'm enjoying life. Wishing all you moms a most wonderful Mother's Day.

love you all,
Nancy

Hey everyone. This will just be a quick update... (no news is good news). I saw my doctor on Tuesday and also had an ultrasound of my thyroid gland which took WAY longer than it has in the past. I think they were taking pictures and measurements for over an hour. After all was said and done, I commented that there must be something interesting since it took so long. The techs really can't tell you anything but they shrugged their shoulders and said it looked about the same as last year. HUH??? What looked the same? I'll find out next Tuesday when I have another appointment at COH with the endocrinologist. I really don't know much about my thyroid, but maybe, just maybe, I'll have a built-in excuse for gaining weight!!! For the last few years they've been monitoring it. They've thrown some scary words around but I have chosen not to address any thyroid dysfunction (even though thyroid cancer runs in the family.) I figure, if it were urgent they wouldn't wait a year each time to repeat the tests. Plus, in my mind (hold any smart comments please!!), I can't wrap my brain around another major illness. Haven't I been through enough already?

Anyways, here are my counts. They are holding steady and my doctor has decreased my dosage of Prograf (anti-rejection) medication. This is a good sign. We're just keeping our fingers and toes crossed for no gvhd (Graft vs. Host) which can increase when the anti-rejection meds are decreased.

Counts (normal range in parenthesis)
WBC 2.6 (4.0 - 11.0)
RBC 3.98 (3.8 - 5.2)
HGB 12.7 (11.5-15.5)
HCT 37.3 (35.0-47.0)
PLT 99 (150-350)

BTW, A3M will be hosting a marrow drive at CSULB this week on Tuesday (4/21) and Wednesday (4/22) from 12 - 5pm in the PSY Quad. So, if you know of any students who haven't registered, please have them find us on campus. Or, you can show up yourself to be registered (it's not just for students!) Just remember to stop at a booth to buy a one day parking pass. I'll be working the drive on Wednesday and possibly on Tuesday (no promises for Tuesday).

Thank you for following my blog.

If you recall, last December, my mom and I wrote letters to my bone marrow donor in Japan. We thanked her for her life-saving bone marrow donation last May 2006.

I'm so excited (crying, in fact) , as the most amazing thing just happened. I got an envelope in the mail from the City of Hope, Matching Unrelated Donors (MUD) Program. They forwarded a letter that my donor wrote to me and also one written to my mom. The letters had to go through many channels to get here... Japan Marrow Bank, US National Marrow Donor Program, City of Hope Hospital and finally to me. Turns out she lost her brother to leukemia 12 years ago. So, she wanted to help someone else struggling with the same situation. She sounds very sweet and genuinely wonderful and caring.

Although I wanted to, I can't post the letter on my blog because somebody may be able to trace it back to her. The international laws about keeping the donor and recipient anonymous are very strict and I wouldn't want to be the one to put the donor program in jeopardy. Maybe someday there will be a change in the laws, but for now, this was my one contact with her. Suffice it to say, she's happy that she could save my life and appreciates the special bond between her and I.

Thank you for following my blog. To me, this letter brings this journey around full-circle. I'll be forever grateful ......
love, nance