Nancy's Update

I know some of you are still checking daily for new updates. I'm doing pretty well. I have a little GVHD or rejection but nothing serious. I'm feeling good and trying to get into the swing of things. Next week I'll see the Infectious Disease Doctor and he'll run some tests to determine which immunizations I'll be needing over the next few months. I'll also have my respiratory treatment where I'll breath some medication in through a nebulizer for approximately 30 minutes in the lab. This is to prevent PCP or pneumonia. I guess the burning question was not only about my blood counts, but so many have asked what my hair looks like now. I'll try and post a picture... I have to figure out how to do it.... I'm lame when it comes to these techy things.

I have become friends with a very special patient, Ann Gregory, and her husband, Chris. Ann is being treated at MDA Anderson in Texas for Leukemia and is unable to find a marrow match due to her ethnic makeup. As with me, it is difficult to find matches because there are just not enough Asians in the National Marrow Donor Bank. Her doctors feel that her only shot at survival is to go through umbilical cord blood transplant. Turns out her insurance won't cover the transplant. Please read her heart-wrenching story on her blog : anngregory.blogspot.com. They are trying to raise the money themselves for the transplant. Please remember Ann and Chris in your prayers and thank you for any help you can provide. Remember, to be added to the registry it's only a swab of the cheek, no needles!. Please see asianmarrow.org if you would like to be a potential donor and possibly save a life! Thank you. love, Nancy

I finally saw my doctor yesterday. I know the burning question is "How are my counts?" Well, my counts haven't changed a whole lot since January. My doctor is not displeased and said it's normal to kind of level off. My counts should rise in the long run. As of yesterday, my white blood count is low at 3.4 (normal 4.0 - 11.0.), red blood count is low at 3.63 (normal 3.8 - 5.2), hemoglobin in low normal range at 11.8 (normal 11.5 - 15.5), and my platelets are low at 84 (normal 150-350). Although some of the counts dropped a little bit, the change was rather insignificant. All of my chemistry panel was normal (except Magnesium, but that was expected due to the medications) and my differentials are all within normal range : ) .

My doctor is not worried but has many things in store for me over the next few months. In April or possibly May, I'm to see two specialists. One is the Infectious Disease Doctor who will determine by tests which childhood immunizations I should get and the timing of them. It's possible that I received some of the donors immunities for certain diseases and therefore, may not need all of the immunizations; MMR, tetanus, diphtheria, polio, small pox, chicken pox, hepatitis series and pertussis to name a few. The second doctor is an endocrinologist to determine my hormone levels. I have no idea what this entails, but it should be interesting. I will also have another bone marrow biopsy in May to see how well the new marrow engrafted! May 25th marks my 1st year anniversary for the bone marrow transplant. It's my new birthday. Just prior to my 1st birthday, I'll be joining the ranks at the Bone Marrow Transplant Reunion at the City of Hope. This is a big happy annual event filled with survivors, donors, family, hospital staff and media. I've been looking forward to taking part in this event for over four years!!!

I still have a little GVHD (Graft vs. Host Disease, rejection) but that's to be expected. My doctor did not cut down on my anti-rejection meds as I thought he would. I'm still taking 16 pills a day (was 35/day at one point). He did drop one medication called Sporanox (Itraconozole) which I'm happy about because it is a huge capsule which is hard to swallow. It's an anti-fungal in case you were wondering.

I got cleared to go out a little more and enjoy life. I still have to stay out of the sun (causes rejection of the new marrow), but I can do some local traveling (cha-ching!) My sister-in-law, Cathy, took me the driving range (at night- so there was no sun.) It's been over two years since I touched my golf clubs. I'm happy to report that I can still hit the golf ball!!! Maybe my donor was a golfer, but I drive with a hook now instead of my usual slice! If I could just control it, I can use either to my benefit, but for now it goes where it goes! I can't wait to play golf again on a course. I think I'll find a golf course with lights so I can play after dusk to avoid the sun. There are many in the area, I just have to make the arrangements.

During the entire process, I just took one day at a time. Now that I look back on it all, I'm totally and completely overwhelmed. I couldn't have gone through it without all of your tremendous support. I ran into two people this week who said they donated platelets and via my blog, they found out that I received them. What a gift you have all given me. Thank you for donating your precious blood and platelets. Thank you for all the meals brought to our home. Thank you all for being there for us in so many ways! I love you all and cherish each and every day. With love, Nancy