Nancy's Update

5.5 Years And Counting....

2011-11-16T00:10:00.000-08:00

Sorry for not posting for a long time. Just been busy with life, just like all of you. Ah, so nice to be able to say that! Saw my favorite doctor today and had labs (three sticks later, on the back of my hand for lack of any good veins anywhere else, they got the samples, ugghh and ouch!)

WBC 3.0 (norm 4.0-11.0)

RBC 4.0 (norm 3.8-5.2)

HGB 12.7 (norm 11.4-15.5)

HCT 37.1 (norm 35.0-47)

PLT 106 (norm 150-350)

ANC 1.5 norm (1.9-8.7)

My counts are stable and Dr. Nakamura is not worried, still says these counts may be my new norm. If he isn't concerned, I won't be either. But, he still wants to see me every six months.

Life is good... busy, but good. This is the time of year (from now until New Year's Day) that I always pack on the pounds. I blame it on the holidays and also when it gets cold my body craves insulation. I'm fighting it off this year. If I can emerge at New Year's at my current weight, I'll be happy . I've started resistance workouts because of the chemo-induced osteoporosis and thought it would also help control my weight. I think it's working. I just need to maintain this regimen through the holidays. Also, still trying to get my 10,000 steps a day. I'm going to need some support to keep up the dieting and workouts! Anybody else up for the challenge?

Hope all of you stay healthy and warm. Steer clear of sick people! Get your flu shots. Thank you for checking on my blog.... love you all... nancy

5th BIRTHDAY!!!

2011-05-25T23:17:00.000-07:00

Today, today, today is the day five years ago that I received lifesaving bone marrow from an unrelated donor who lives in a faraway place. I can only hope and pray that she is fine following the devastating Japan earthquake and tsunami which hit just a few months ago.

Today is a day for celebration!!! At five years, they say the chance of relapse goes way down. Seems like it has been more than five years or, as I've said before, that all that did not happen to me! I have to say our family has fared well even under the extremely stressful and scary circumstances. Scott is at Cal State Long Beach and is majoring in mechanical engineering. Andrew is transferring from Cypress College to Cal State Fullerton and will major in kinesiology. Mark continues to be my rock!

I visited the City of Hope for my five year appointment. Things are really looking up and although my counts are still not all within normal range they are edging closer and closer.

WBC 3.0 (norm 4.0 - 11.0)

RBC 3.92 (3.8-5.2)

HGB 12.9 (11.5-15.5)

PLT 111 (150-350)

My platelets have never broken 100! Woo Hoo... 111 is record breaking for me. My PB. All my other counts and chemistry are within normal limits.

Last month, my brother, Kurt, and I attended City of Hope's, 35th Annual Bone Marrow Transplantation reunion. It's always amazing seeing patients sporting over-sized buttons showing how many years ago their transplant took place. We must not forget those who have lost their battles. Here are a few pictures from the event.

Left Photo from left to right: Myself, Kurt (my brother), Michelle (dear friend and fellow transplant patient 5.5 years post-transplant) and Pat (Michelle and my friend). Right Photo: Michelle, Dr. Nakamura (who helped save my life!) and yours truly.

Left: Christine Pechera and myself. She was in the hospital room right next to me. After being in isolation for so long and being hospitalized for months, I wanted to stir up some trouble... I was trying to think how Christine and I could switch our urine samples or our blood samples and really throw off the doctors... but, then I knew better... I was just trying to have a little fun..... can you blame me?

So, all in all, life is good. I thank God for every single day!

Thank you for continuing to check on me. I appreciate each and every one of you. Your support and prayers have had such a huge impact on so many levels...

love, Nancy (5 years and counting!)

No News is Good News.

2011-04-05T13:56:00.000-07:00

I am truly sorry for not updating my blog.

The year in a nutshell: I spent most of the year sick with the flu (even though I got my flu shot last fall). Took antibiotics for secondary infections for more than 40 days this year. I'm finally better....

In the midst of all of that, we ended up with another puppy. A college student thought she could care for the puppy, but after having her for several months, realized otherwise. Yes, Mochi (given this name before we had her), is a lot of work. And, yes, she's a little 7 pound brat to her big brother, Miso (Bichon-Poo.) But, she is a sweet little girl, in her loving, bratty, little way. She is a malti-poo (maltese-poodle) and is 5 months old. We were told she was house-broken, but she wasn't, but now she is.... Mochi and Miso play rough but also are good company for each other. My cousin said all we need now is another puppy named Tofu. I don't think so Lynny! I think two dogs are good, especially since we sort of "rescued " both and were not really looking for a dog (much less 2), but would have eventually got a dog.

My friend, Tami, has a little too much time on her hands (jk, tami) and made this sign for me:

Here are a few pictures of our furry friends: (Mochi is the little one)

Thanks for checking in on me. Hope all is well with all of you! love, nancy

A Match Found For Krissy Kobata!!!

2011-02-09T22:05:00.000-08:00

2011, Year of the Rabbit, begins with fantastic news! After a very long search, a 9/10 match has been found for Krissy Kobata. (My match was also 9/10) To view her updates, click on her name on the sidebar of my blog. And keep registering new potential donors!!! We still have a lot of work to do!!!

I'm sorry for my absence. Happy New Year to all of you!!! Nothing earth shaking happening with me. I spent most of holidays under the weather. After two different 10 day doses of antibiotics (almost back to back), other medications, doctor visits and muscle damage due to extreme coughing spells, I'm finally well. It took Krissy's great news to get me to crawl out from under my rock and post to my blogsite!

Let's all keep praying for Krissy and her potential donor, as well!!! Thanks for checking in on me. Love you all, n

Merry Christmas!

2010-12-21T15:21:00.000-08:00

Hi Everyone,

Sorry, for this delayed posting. I've been a little busy, just like all of you!

Great News! Results back from my bone marrow biopsy performed in November. Clean Results, no sign of leukemia, cancer cells or anything else bad! That's the best Christmas gift a person can ask for!!!

Wishing all of you a very Merry Christmas and a New Year filled with peace, robust health and much laughter!!!

Abundant Blessings to all of you. Always, Nancy

Last Bone Marrow Biopsy (Hopefully!)

2010-11-13T00:16:00.000-08:00

I visited the City of Hope Tuesday for what we're hoping will be my last bone marrow biopsy. (Thanks for driving me Cathy!!!) My doc wanted to perform one either at 4 or 5 years post-transplant, so we compromised at 4.5 years. According to my extremely competent Physician's Assistant, Beth, the marrow looked beautiful. Music to my ears!!! In the past, since I had both MDS and Myelofibrosis, the marrow was sort of meshed together making the draw difficult (and painful), to say the least. No problems this time.

My counts are stable as follows:
WBC 3.5 (normal 4.0-11.0)
RBC 3.88 (3.8 - 5.2)
HGB 12.7 (11.5-15.5)
HCT 36.4 (35.0 - 47.0)
PLT 96 (150-350)

Many of you have been wondering what I've been up to. I can sum it up in one word "Life." This is a good thing. Keeping up with the family and returning to work part-time has kept me on my toes. Still love to play "Words With Friends" in my sparetime and am still walking 10,000 steps a day at a minimum. Our puppy, Miso, loves his daily walks as much as I do! I'm still helping with A3M events, as time permits, too. We have to find our dear Krissy Kobata a match!!!

Overall, I'm feeling pretty good. I still stay out of the sun as it causes rejection/Gvhd which manifests itself on my skin (mostly face and arms.) I'm still dealing with some neck injury from when my mom and I were rear-ended back in March. I have appointments twice a week with the physical therapist and the chiropractor. I'm hoping to achieve greater range/mobility when turning my head left and right. Also, hoping for the pain and stiffness to subside.

Thank you for checking on me. I appreciate all of your support over the past eight years!
love, nancy

A3M Presents Society of Seven with Jasmine Trias!

2010-09-03T19:37:00.000-07:00

Hey Everybody. Here's a chance to support A3M in their life-saving cause plus see a terrific show!!! Society of Seven with Jasmine Trias will be at the Cerritos Center for the Performing Arts on October 3rd. The event is one month from today and there are still show tickets and dinner/show combination tickets available. Don't miss this one. It's guaranteed to be a great time. There will also be a silent auction and raffle for great prizes. See below for information. I realize that the information below may be difficult to read. You can also go to asianmarrow.org to get further information on how to get event tickets or purchase raffle tickets.

Please, please, please support this worthy cause so that those requiring bone marrow/stem cell transplants can have a chance at life. As you know, the Asian population is severely under-represented in the National Marrow Donor Program. With your help, we can make a difference!

Also, If you have anything to donate to the silent auction, please email me and I'll personally pick it up from you! We appreciate anything we can get! You can even ask your friends, family, or places that you visit, such as restaurants, stores, spas, doctors, dentists, etc. Maybe they'll donate products or gift certificates!!! This is an important life-saving cause and without the help of our community, many patients are left with no hope!

Thank you for following my blog and for any support you can provide! Love you all! n

Be The Match 5K, 1K, Tot Trot & A3M Annual Fundraiser

2010-08-29T15:20:00.000-07:00

I think I may walk this 5K etc... Proceeds benefit the Be the Match campaign (previously National Marrow Donor Program). Who is in??? I will definitely be walking, not running or jogging it.

Even better. just found out that my friend, Krissy Kobata, who has been in search of a marrow/stem cell donor for over two years, has entered a team, "teamkrissy" in this event. Let's all walk with her team! See her blog on my sidebar for more information or just click on the link below and register! See you all November 6th! Register by October 1st to save $5.

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Don't forget A3M's annual fundraising event on October 3rd in Cerritos featuring Society of Seven with Jasmine Trias. Good tickets still available. Go to asianmarrow.org for more info!

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Link to teamkrissy: http://www.bethematchfoundation.org/goto/teamkrissy

Thanks for checking my blog again!

love ya,

nancy

Appointments And A Puppy!

2010-06-23T00:15:00.000-07:00

I made my quarterly visit to the City of Hope today. It was a good day. My counts are stable:

WBC 2.8 (norm 4.0 - 11.0)
RBC 3.84 (3.8 - 5.2)
HGB 12.5 (11.5-15.5)
HCT 35.9 (35 - 47)
PLT 96 (150-350)

My doctor is not concerned with any of my counts and has changed my appointments to once every six months! yay!!
I got to visit with my dear friend and fellow transplant patient, Susan. See the sidebar for her blog.

Susan is currently doing well but has had a few issues since her transplant 2.5 years ago. I'm hoping she'll overcome them and life will return to normal, so to speak.

After my mom passed away, somehow we ended up with a stray puppy. We scoured the animal shelters for "lost dog" info, but nobody reported him as lost. The vet says he's about six months old and is a poodle mix. He's just a real joy! My only regret so far was taking Miso to the groomers last week. Here's a before and after photo... Oh well, his hair will grow back eventually... (I know, I know....he looks cuter in the "before" photo because I was fooling around with a free app on my phone and decorated his photo... like I have nothing better to do, right?)

Life is good. Thank you for your continued support. I feel truly blessed to be surrounded by so many loving and caring friends and family (and now puppies, too)! love, nance

10,000 Steps A Day

2010-06-04T09:29:00.000-07:00

I'm sure you've all heard that you should walk 10,000 steps a day. Oprah, Dr. Oz, all of your own doctors, exercise gurus, etc.... they all recommend 10K steps each day.

I can't believe that I haven't blogged about this before now. I've now been making 10,000 steps a day for over a year! My friends and I began on this mission on April 9, 2009, by the leadership of Dr.Morinishi (and of course, his wife, Shari), who has recommended this form of exercise to his patients. Of course, I've missed a few days here and there, but I've always made up for the missed steps (My friend, Val, hasn't missed a single day! Go Val!) In fact, the new mission became 1 million steps every quarter (which is an average of over 11,000 steps a day!) For every complete quarter since April 9th, I've made my million steps!

Dr. Morinishi has seen improvements in the health of his patients who are walking. He's seen drops in weight, clothing sizes, blood pressure, heart rate, cholesterol levels (both total and LDL) and fasting blood sugar. He's also witnessed the disappearance of pre-diabetic conditions.

We use the Omron pedometers (model HJ112) which calculates steps, aerobic steps, calories and mileage each day. It has a seven day memory and we log our steps on a google spreadsheet. Email me if you are interested in logging your steps with us. It's fun, cheap, and a good way to stay motivated! You can buy these pedometers online for about $25. We last found the best price on amazon.com. If you become a spreadsheet user, you'll see some participants make 20,000 steps a day!! Woo-Hoo.....

It's nearly summer and what better way to begin the summer with an exercise program!
Keep on walking.... love ya, nancy

4th Birthday, Bittersweet...

2010-05-25T13:28:00.000-07:00

Hi everyone,
So much has happened this year. I've been encouraged (thanks Lynny) to blog and explain my absence...

In a nutshell, in January, my mom was diagnosed with cancer and became very ill. Our families surrounded her with love and support until her passing in April. She was the one who made the 80 mile round-trip trek to visit me every day while I was at the City of Hope for over 81 days. She dropped everything to support me and my family during my years of illness and search for my donor. I'm fairly certain that she knew her health was ailing, but she put her own health issues aside to see me through my bone marrow transplant and after care.

I miss her everyday. I especially missed her this past Mother's Day.

Today, is my 4th Birthday. In some ways, it doesn't seem like it's already been four years since my transplant. Then, in other ways, it seems like it happened eons ago; in another life; or it happened to someone else. Yes, I get two birthday folks. I earned it!! : ) But, having this birthday without mom is a bittersweet experience. I think that she is looking down, smiling, and telling me to "Go Girl!" She was my #1 cheerleader and supporter! I couldn't be more grateful for everything she has done for me and everything she taught me!

My two pieces of advice for today... #1. Don't smoke. #2. Don't be afraid to see your doctor. It could save your life.

I thank you for checking my blog and being so patient with me. My counts are stable and my health is fine. I will visit the City of Hope again in June and will post my counts at that time.

with love, nancy

Sorry I Haven't Posted Lately

2010-02-24T22:48:00.000-08:00

Busy, Busy, Busy.... I'm sorry that I haven't posted in a while. But, I thank you for checking frequently for updates. My apologies....

The good news is that "no news is good news." I had a doctor's appointment in January (yes, I know it was over a month ago), and my counts remain stable! Thank God for this. I've been off all anti-rejection medications since November and am feeling well. My counts in January were as follows:

WBC 3.6 (normal 4.0 - 11.0)
RBC 3.73 (3.8 - 5.2)
HGB 12.1 (11.5 - 15.5)
HCT 35.6 (35.0 - 47.0)
PLT 92 (150-350)

Thank you again for checking on me. I'm so blessed to be surrounded by so many caring family and friends. I promise to post again right after my next appointment in March! Until then, stay well. love, nancy

Walking On My Own

2009-11-21T21:03:00.000-08:00

It's been over three and a half years since my bone marrow transplant. Time has passed so quickly and yet, sometimes it seemed that time stood still.

I had a visit with my City of Hope doctor last week. He is pleased with my progress and has taken me off all of my anti-rejection drugs. Yahoo!!! I'm literally walking on my own in my new immune system. As terrific as this seems, it's also extremely frightening. But, I know that my doctor would not have pulled me off my meds if he felt I wasn't ready or if he was felt it wouldn't be safe. I'm so glad to be off the medications and am continuing to think positive.

It has been quite a journey... the long wait for the donor, being kept alive by transfusions, the transplant, the recovery, the setbacks and the ups and downs along the way. What a ride it has been! I'm thriving and glad to be alive, celebrating each and every moment of every day. I could not have come through with flying colors without all your help. You truly have done so much to aid in my restored health. I could never properly thank all of you for everything you have done. Here's just a small list of your expressions of kindness and love... emails, cards, meals, driving me to doctors and hospital visits, phone calls, prayers, volunteering at bone marrow drives, hosting marrow drives, pleading with your friends and family to get others to join the National Marrow Donor Registry, donating blood, donating platelets, visiting me in the hospital, not visiting me in the hospital (when I was in isolation), supporting A3M's efforts in order to help me, buying Tee Sponsorships to help A3M, playing in the OCO Golf tournaments to help A3M, supporting A3M through your direct donations and supporting A3M at their fundraising events, to name a few. Your continued support and prayers have helped me through so many rough years. I am truly blessed and thank God every day for my life and for all of you.

Here are my counts for those of you interested:

WBC 3.0 (norm 4.0-11) improvement over the last two months yay!
RBC 3.76 (3.8 - 5.2)
HGB 12.2 ( 11.5 - 15.5)
HCT 35.4 (35.0 - 47.0)
PLT 86 (150-350)

I'm still not completely comfortable with not taking the medications which I originally thought I'd be taking for the rest of my life. It's literally a hard pill to swallow but a good one, at that.

Thank you all for your continued support and prayers. Let's all remember to thank God for everything during this Thanksgiving Holiday. We have so much to be thankful for... May you all have a blessed Thanksgiving Day.

Love you all... nancy

Update & Thank You For Your Help

2009-10-23T19:53:00.001-07:00

Last Sunday was Asian for Miracle Matches (A3M) Benefit Dinner & Concert. What an evening it was!!! Thanks to all who helped make this event a success. Many of you donated items or gift certificates for the silent auction, many of you purchased raffle tickets and many of you attended the event! It was an evening to remember, especially seeing a patient meet her donor for the very first time. This is what it's all about! Life is what it's all about. Thank you all for supporting this great cause.

In other news, I had a visit at the City of Hope on Tuesday. My counts haven't budged... we were hoping my white count would pop back up, especially since it's flu season. But, nobody's worried, so I'm not going to worry either.

For those curious ones, here are my counts:
WBC 2.3 (norm 4.0 - 11.0)
RBC 4.0 (3.8 - 5.2)
HGB 13.0 (11.4 -15.5)
HCT 37.9 (35 - 47)
PLT 95 (150-350)

Again, thank you for your support. You all make a huge difference in my life! love ya, n

Tony Chau

2009-10-08T14:14:00.000-07:00

My friend and fellow transplant patient, Tony Chau, lost his battle today. He had a marrow transplant over four years ago and has continually battled gvhd, lung problems and many other complications. Most recently he was found to have a serious fungal infection in his lungs complicated by Influenza A, which I believe to be Swine Flu.

A few days ago, he was getting about 80% oxygen absorption so was put on a respirator. More recently he was only at 50% oxygen. Although it was a tough decision on his wife and family, they decided to turn off the machines today.

Above left photo: myself, Tony, his wife, Danielle, and their three adorable children, Taylor, Owen, and Matthew. Right photo: myself, our doctor, Dr. Nakamura, and Owen. These photos were taken in May 2009 at the City of Hope Bone Marrow Transplant Reunion. Below: Right photo: myself, my mom, Tony and his three children.

This is the second friend to pass away this week. I'm broken and heavy-hearted. My grief is being channeled through renewed efforts to help A3M with their benefit and dinner concert, in Cerritos, on October 18th (next weekend). If anyone, would like to attend the benefit dinner and concert, please contact me or go to http://www.asianmarrow.com/ as soon as possible. The tickets are in short supply. Click on Benefit Dinner & Concert. This year Lea Salonga returns to A3M’s stage to perform her 2009 “Inspired” concert. Join us, as we enjoy her all time favorites and some wonderful new selections. Lea created the role of the orphaned “Kim” in Miss Saigon and brought to life the singing of Disney’s Mulan (“Reflection”) and Princess Jasmine in Disney’s Aladdin - it’s truly “A Whole New World.”

If you, or anybody you know, would like to donate a silent auction item or buy raffle tickets, I will gladly go anywhere in Los Angeles or Orange County to pick up the item or bring you the tickets. You could also send me anything and I'll get it in time if it's mailed asap. It could be anything from gift cards/certificates or new merchandise from places you frequently visit or business owners that you may know. This is how we can help support A3M's cause of finding donors for so many who are in-need. Contact me if you have any questions at sakakura@ca.rr.com

Thank you for any support you can offer A3M. Thank you for following my blog through these challenging times.

Love you all. n

Nick Glasgow

2009-10-07T00:15:00.000-07:00

Rest in peace Nick.

Please Say A Prayer

2009-10-01T16:42:00.000-07:00

Many of you know about Nick Glasgow. He's 1/4 Japanese and 3/4 Caucasion and according to his doctor, had a 0% chance of finding a bone marrow match to save his life. He beat the odds and found not one, but two, perfect 10/10 matches. He received his transplant in August but has already relapsed. Please say a prayer and check out his blog.

http://markfredrickson.wordpress.com/

Thank you....

Update 9/09

2009-09-14T21:14:00.000-07:00

I visited the doctor this morning. Things are looking pretty good except for a small blip in my white count. My doctor is not too concerned but will retest next month. All my other counts and chem panel are within normal limits. Here are my counts as of 9/15/09 (3 years, 3 months post-transplant! yay!)

WBC 2.3 (normal 4.0 - 11.0)
RBC 4.16 (3.8-5.2)
PLT 98 (150-350)

Please Support A3M

There is always a need for more potential donors to join the registry! If you are already registered, Asians for Miracle Marrow Matches can really use your help in other ways, too.

Ways you can make a difference:
1. Attend 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

2. Donate something for A3M's Starnight Silent Auction.
3. Buy Starnight Raffle Tickets

Information for the above, can be found on A3M's website : http://www.a3mhope.org/ or by calling 888)A3M-HOPE

Matthew Needs Our Help!

http://teammatthew.org/

Matthew is a vibrant 27 year old who was in pharmacy school. All that is on hold now. Matthew is in need of a bone marrow transplant. A donor was located but suddenly became unavailable. Sound familiar??? It should because it happened to me twice.

Please, if you haven't registered, do so now. All it takes is some paperwork and four swabs of your cheek. It really couldn't be any easier and can potentially save a life. You can find a bone marrow drive or order a kit to be sent to your house. There really aren't any excuses not to be registered anymore. And if you get that phone call or letter that you may be someones match, please by all means, follow through and become a true hero! Marrow Drive or mail in kit information can be found at http://www.a3mhope.org/.

Thank you for continuing to follow my blog for so long. I appreciate all of your support! God is good!
nancy

Michelle Maykin

2009-07-26T18:31:00.000-07:00

Goodbye Michelle http://projectmichelle.com/blog/

You put up an inspirational fight to the end and have helped save so many lives through your efforts to get new potential donors registered. Your efforts will continue to save lives for decades to come.

May you finally be free from disease and pain. Rest in peace Michelle. n

Three Years & Counting

2009-07-04T14:31:00.001-07:00

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 & Erica)

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 Said, "No Biopsy"

2009-05-09T21:31:00.000-07:00

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

Happy Belated Easter!

2009-04-16T19:32:00.000-07:00

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.

Tea for Ten

2009-03-25T12:24:00.000-07:00

Last November, at A3M's Starnight, Silent Auction, Susan Carrier asked me if I'd help her host a "Tea Party for Ten." I was skeptical but knew it was the right thing to do, since I was responsible for her being knee-deep, as she calls it, in volunteer work with A3M. (Susan, you are a valuable asset and resource to A3M!!! And... it's always a joy to be in your company!)

The winning bidder collected on this affair last Sunday. It was a blast hosting this wonderful event. To read more about the event from a much more prolific writer, see Susan's blog on my sidebar.

It was a WIN-WIN situation, with the girls having a lovely time and A3M earning additional funds to help in their mission. I believe we are planning to do this again next year, so if you are interested in bidding on this or supporting A3M, please save the date, October 18, 2009 for A3M's Starnight featuring, the talented, Lea Salonga. The event will be held at the Cerritos Center for the Performing Arts.

AMAZING LETTER!!!

2009-03-04T16:39:00.001-08:00

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

Okay, Time to Blog...

2009-03-02T10:36:00.000-08:00

Many people have called or emailed me asking how my counts were at my appointment two weeks ago. I'm sorry, I haven't updated my blog site. But, no news is good news. My counts are holding steady. My doctor isn't worried, in fact, he said it could take years for my counts to reach normal levels...

Counts on February 17, 2009
WBC 2.9 (normal 4.0-11.0)
RBC 3.78 (normal 3.8 - 5.20)
HGB 12.3 (normal 11.5- 15.5)
PLT 93 (normal 150-350)

Speaking of "years".... at my next appointment, I'll almost be three years post transplant! Yay!!! So, we were asking Dr. Nakamura, if he'll be performing a bone marrow biopsy (bmb) to check my status as we previously discussed. Surprisingly, he decided not to do the bmb. He said we may do it at five years, unless something seems "off" in the meantime. This is good news as it is never fun to have that procedure and it proves to be expensive on my end. So, obviously, my doctor is satisfied with my progress and is not particularly worried about anything pertaining to my transplant. He is, however, keeping me on the same dosage of anti-rejection medications. This is really not a big deal in the big picture. He might reduce the dosage slightly at my next appointment! I'll be looking forward to that!

Thank you for continuing to follow my progress. I've been swamped with.. hmmmm... so many things. I haven't had the time (or energy) to email, blog or stay in contact with everybody. But, rest assured, all is well.

I hope all of you are having a great 2009, so far. Even though the economy is so bad, life is good.

Love you all, nancy

Doo Dah Parade - Mutts for Marrow

2009-01-19T13:51:00.000-08:00

Yesterday, we all marched in the Doo Dah Parade in Pasadena. It was hot and exhausting, but it was a great way to "get the word out" about the need for minority and mixed race donors. Some very clever PR person came up with the theme "Mutts for Marrow." So we gathered up the mutts that we could, four-legged and human, and had a fun day.

In the first photo, Krissy Kobata, in the yellow tutu, was crowned Queen of the mutts! She is still awaiting a marrow donor to save her life!

I would like to personally thank my cousin, Carolyn (Lynny) Sagara, and her niece, Brooke Williams, for coming out to join the cause. Brooke did a fantastic job of spotting the Asian people in the crowd and delivering a dog-bone to them which was complete with the website where they get information on how to register to become a potential bone marrow donor. They were also able to bring Carolyn's beloved dog, Savanna!

We also had the distinct pleasure of having our nephew, Joey Sakakura, age 3, march with us in the parade. Thank you Cy and Yolanda for letting us march with your hapa child!!! He was perfect and a real joy, as always!

Susan Carrier and I on the right!

My family thought I had finally flipped my lid when they saw me attaching decorated dog bones to a tiara!

Left Photo:

In front : Brooke & Savanna

Back row left to right:

Barbara, Susan and Carolyn.

Photo at right: Brooke, tall man, Joey

Photo at left:

Lynny & Savanna

Photo below at right: JOEY!

To get information on how to become a potential bone marrow donor and save a life, go http://www.asianmarrow.org/

Thank you for continuing to follow my blog and to spread the word about the desperate need for potential donors! Love you all, nancy

Mutts for Marrow

2009-01-14T10:29:00.000-08:00

Mutts for Marrow to March in Doo Dah Parade, Pasadena, CA

If you are a mutt (hapa or other minority mix) or a full minority please come out and join us in the Doo Dah Parade in Pasadena this Sunday, January 18th. You can even bring your own four-legged mutt! We're to meet at Memorial Park at 10:30 am.

Our theme is "Mutts for Marrow." We'll raise awareness of the need for minority bone marrow donors as we walk the six-block parade route with our mutts (about 1/2 mile.) We'll also be throwing out Milk Bones, Life Savers and information about becoming a donor. Krissy Kobata, a young hapa in search of her bone marrow match, will be joining us. She's pretty enough to be a Rose Queen and quirky enough to be a Doo Dah Queen. If you or your dog would like to join the march, please let me know by email, sakakura@ca.rr.com There's a modest $10/person charge for participating in the parade. Dogs walk free. And, of course, there's no charge to come and watch and cheer us on. It'll be different, fun and most importantly, it'll help spread the word about the need for minorities and mixed-race minorities in the National Marrow Donor Program! Thank you!

Appointments & Donor Letter

2008-12-16T22:30:00.000-08:00

I visited the City of Hope today. It turned out to be a long day. First was my lab appointment, then my appointment with Dr. Nakamura, then a follow up appointment with the endocrinologist.

My counts are stable:
WBC 3.3 (norm 4.0-11.0)
RBC 4.0 (norm 3.8 - 5.2)
HGB 13.1 (11.5-15.5)
PLT 89 (150-350)

I saw the endocrinologist for follow up. A few months ago they repeated the bone density scan. Just from one year ago, it seems my bone density has decreased up to 10% in my back and hip. They are pushing the calcium/Vitamin D regimen and are giving me one more chance to take it as directed. At the next appointment, if there's still a decrease they are going to prescribe prophylactic calcium (something like Fosamax.) They also performed an ultrasound of my thyroid gland. They are watching a few nodules and are throwing around words that I don't even want to think about right now. So, I won't even go there.

I've been so busy preparing for the holidays (as you all have, as well). For the first time in years, my cards didn't get mailed the first week in December. I hope to have them mailed by this Friday! But, the tree is up, the lights are on the house and most of the gifts have been purchased and wrapped. I'm not a bah-humbug kind of gal. I enjoy the hustle and bustle. I enjoy being in search for the perfect gift. I enjoy all the preparation and also enjoy the parties! I enjoy being in the crowds (although, I'm still suppose to watch my exposure...ooops) I think I enjoy it because I'm grateful to be alive. I even enjoyed cooking a turkey at Thanksgiving... in fact, since Costco had fresh turkeys at half price after Thanksgiving, I roasted another one a few days later. Call me crazy and call me obsessive-compulsive, I call it enjoying life!

Some time ago, I found out that because my donor is from Japan, I have one chance to send a letter to her. The letter has to be totally anonymous meaning it can't have any identifying information; no names, addresses, phone numbers or email addresses. (Thank you Chris Gregory for trying to encourage me to write the letter with a secret message embedded in it. As much as I wanted to have contact with her, I decided since I only get one shot, I didn't want to jeopardize the letters being confiscated before delivery) So, being 2.5 years post-transplant, mom and I decided to send the letters now. She wrote one and I wrote one and they are being delivered together. The ladies in the MUD (Matching Unrelated Donors) Unit at the City of Hope, told us today that sending the letters now was better than two weeks post-transplant, because anything can happen in the first few years. As of now, my donor doesn't know whether I lived or died! She'll know what a fantastic thing she did when she gets the letters.

I thank all of you for continuing to follow my status through my blog. I feel blessed to have made it through another year. It was a little rough as several of my friends didn't make through 2008. We have to be appreciative of life and be thankful for each and every day.

Wishing you all a Merry Christmas! May God richly bless you and yours in 2009!

love you all,
nancy

Say A Prayer...

2008-12-02T14:01:00.000-08:00

Please say a prayer for Erica Murray and her family.
http://ericamurray.blogspot.com/

Calling all Golfers & A3M Supporters

2008-10-24T22:00:00.000-07:00

1. Buy your Starnight tickets now!!! A3M's Starnight is their annual fundraiser featuring Keiko Matsui in concert. The event is next weekend, November 2nd, and the economy has wreaked havoc on the ticket sales. Go to asianmarrow.org for ticket information!!!

2. Golfers!!! OCO is hosting a golf tournament with net proceeds being donated to A3M. The event is on November 17th and we need to fill the field. Also, we need tee sponsorships to help make this tournament a success. Go to ocoyouth.org for golfer and tee sponsorship information!

We are also looking for Silent Auction items for Starnight and/or raffle prizes for the golf tournament. Contact me at sakakura@ca.rr.com if you have something to donate! Thanks for your help. Anything you can do will be much appreciated!

love you all, nancy

Two Years, Four Months Later... : )

2008-10-14T22:15:00.000-07:00

I had my appointment today at the City of Hope. I've failed to post my blood counts for some reason over the last few months. My counts are stable and some are still low, but doctors are not worried. Sometimes, these things take time.

WBC 3.2 (normal 4.0-11.0)
RBC 3.75 (normal 3.8-5.2)
HGB 12.3 (normal 11.5-15.5)
PLT 84 (normal 150-350)

For some reason, the hospital was slammed with patients today. I've never seen so many waiting for lab work and doctor appointments. As a result, checking in was slow, getting my blood drawn was slow and seeing my doctor was a bit of a waiting game. Two hours later, after my appointments were done my doctor said he'd send the nurse in to deliver my flu shot. Two hours after he said that, I finally got the shot and made it out of there. Whew... long day.

Please send positive thoughts and prayers for the following people (some of their blogs are on my sidebar:)

Ann Gregory - released from MDA in Texas following her September transplant
Krissy Kobata - still in search of a donor
Michelle Maykin - Going up to Fred Hutchinson Cancer Center in Seattle this week
for double umbilical cord transplant
Erica Murray - Leukemia relapsed following transplant
Jaimee Yamaoka, 18, recently diagnosed with Hodgkins Lymphoma

These friends stories highlight the importance of Asians for Miracle Marrow Matches (A3M). Please support A3M by attending Starnight (go to www.asianmarrow.org for info) or buying raffle tickets for Starnight or donating items for their silent auction. Additionally, OCO is hosting their golf tournament this year with net proceeds being donated to A3M. Go to http://www.ocoyouth.org/ for the golfer application or Tee Sponsorship information. A3M needs your help to continue on their mission to find donors for all those API's in-need. You can make a difference by helping out.

Thank you for supporting me. I appreciate all of you more than you know. love, nancy

Register to Save a Life!

2008-10-04T01:24:00.000-07:00

Another great opportunity has arisen to get yourself and all your friends and relatives registered in the National Marrow Donor Program. Next Sunday, October 12th, Catalyst Christian Community Church will be having a bone marrow drive following the 10 am service:

Catalyst Christian Community Church
held at:
Stanford Middle School
5871 Los Arcos St.
Long Beach, CA 90815

A3M will again be registering potential donors. It's so easy to become somebody's life-saving hero!! You just need to be between the ages of 18 and 60 and in good general health. There is some paperwork and all it requires is a swab of your cheek!!! What could be easier and what could be more important?

My dear friend, Krissy Kobata, is in search of a bone marrow donor. She has Myelodysplastic Syndrome (MDS), which is what I also had. She is only 26 years old and needs to have someone save her life. As you know, ethnicity is a key factor in finding a bone marrow "match." Krissy is of mixed heritage - Japanese and Caucasian - also known as Hapa, which has made it more difficult for her to find a donor match.

Please register on Sunday, October 12th and please have all your friends and family come along, too. You are more than welcome to attend Pastor Barry Deguchi's 10am service, but if you can't get there , we'll be there following the service from 11:15 to about 12:30.

Thank you so much for passing the word! You may be the one person who can save a precious life!!!

love you all,
Nancy

Asians for Miracle Marrow Matches

2008-09-10T16:46:00.000-07:00

As you know, Asians for Miracle Marrow Matches (A3M) coordinates recruitment drives, provides education assistance and helps facilitate prompt access to potential marrow and blood cell donors.

Here's how we can help them provide these services and help provide life saving marrow matches to those in need:

1. Buy your Starnight Tickets now!!! It's your chance to see the fabulous Keiko Matsui in Concert at the Cerritos Center for the Performing Arts Center on November 2nd. You can also buy a dinner/concert package for an even more enjoyable evening!!! There will be a silent auction. A3M is looking for donations for their Silent Auction. If you would like to purchase tickets or have items that you would like to donate for the Silent Auction, please call A3M toll-free at 888.236.4673, visit their website at http://www.asianmarrow.org/ or email me at sakakura@ca.rr.com. Please buy your tickets and participate in the Silent Auction. You will have a fantastic time while supporting a worthy cause.

2. This wonderful organization, The Orange Coast Optimist Club, that I have belonged to for over 15 years, is hosting its annual golf tournament with net proceeds being donated to A3M. It's a day promised to be filled with great golf (or at least so-so golf depending on who you are), games on the golf course, raffle prizes and a delicious fun-filled dinner. This will all take place on Monday, November 17th. So, put in your day-off requests from work and send in your golf applications as soon as possible. OCO is in need of raffle prizes for this fun-filled charitable tournament so please contact me if you have anything you'd like to donate for this event. Also, OCO would like you to become a tee sponsor. You can sponsor a tee personally or have your company and/or friends become a tee sponsor!!! To get the golf tournament and sponsorship application, please go to http://www.ocoyouth.org/ and click on OCO 20th Annual Charitable Golf Tournament. Thank you for supporting A3M through OCO's Golf Tournament.

3. If you haven't already, please register to become a bone marrow donor. There will be a bone marrow drive Sunday, September 21st at the Cerritos Baptist Church. I will be speaking briefly and so will Krissy Kobata, a patient in-need of a match! The drive will be following both services. So, please come to the service or if you prefer, just come to register as a potential life-saver!!! All it takes is some paperwork and a swab of your cheek!!! Here's the info:

Sunday 9/21/08
Cerritos Baptist Church
11947 Del Amo Blvd.
Cerritos, CA 90703
Services 9 am and 11 am
Marrow Drive following the services : approximately 10:15 and 12:15.

Please spread the word on these three events. A3M appreciates all your efforts in helping these events become a great success. I appreciate all of your support over the past six years that I've been ill. I'm feeling really good and I'm in complete remission. I plan to stay that way!!!

Please feel free to contact me at sakakura@ca.rr.com if you have any questions about these events. Thank you all again! love, nancy

Prayers for Ann!!

2008-09-06T11:08:00.000-07:00

Hey Gang, My dear friend, Ann Gregory, is receiving her new marrow as I type this. This is her second transplant. I just want to wish her the best birthday ever. This is to new beginnings, to the new marrow setting up shop and loving its new home. Here's to the next half century of Chris and Ann continuing their happy and healthy life together.

Please storm heaven with prayers for her and Chris. Let's pray for complete remission and complete and lasting engraftment of these new cells. Let's thank God for this donor who unselfishly offered a part of herself to save Ann's life. What an act of kindness given to a perfect stranger. What a miracle!!!

Thank you for your thoughts and prayers for Ann.

I'm recovering well and feeling much better. Thank you for continuing to follow my blog. I couldn't be surrounded by a more supportive and loving group of people. Love you all! nancy

Nice To Be Home

2008-08-14T18:54:00.000-07:00

I was discharged from the hospital yesterday afternoon. I'm sorry I didn't update my blog. I was still feeling really bad yesterday and was out of energy. It was hard to even sit up.

When I first got to the hospital, they set up an IV and immediately hydrated me and gave me antibiotics. First came the yummy bag of levaquin followed by another tasty bag of bactrim. Well, the bactrim made me totally nauseous and I couldn't stop... well, you know. So, in addition to feeling like crap, I was nauseated and had to have a pan nearby. So, to fight the nausea they gave me another drug which caused me to have horrible migraine headaches. When I have migraines, it makes me nauseous..... vicious cycle....

They sent me home with 200 bactrim pills. Although, I can take them they still turn my stomach. So I turned to good old chocolate milk to wash them down. No nausea.... other side effect.... TMI...

I'm feeling much better today. I slept six hours straight last night for the first time in about a week. During the hospital stay, nurses were going in and out of my room all night, sticking me for blood samples, checking for allergic reactions, changing the beeping IV's, etc... They had to relocate my IV line four different times because my veins are so poor. I don't know how I stayed in the hospital so long two years ago. Like I had a choice... I guess you just gotta do what ya gotta do and take one day at a time. It was worth it but, I don't have much patience for inpatient care anymore.

I'll have to go into the clinic each week to check my lungs. I have a little more lung capacity as they've sent me home with a spirometer. So, these medications, must be working. In the meantime, I'm suppose to rest up. So much for my summer plans : (

Thank you for checking in on me. Love you all, nancy

Room with a View - Again!

2008-08-12T17:55:00.000-07:00

Well, Well, Not So Well. Last week I was not feeling that great. I thought it was because I was coming off of steroids. WRONG!! Saturday ( 8/9), I was running a temperature of 102 and was having difficulty breathing. So - I called the City of Hope and they wanted me to come in.

I know I did the right thing by visiting the ETC (Emergency Treatment Center) at CoH, but I didn't think I was sick enough to be admitted. WRONG!! Over the last two days, I've had a battery of tests including chest x-rays, blood cultures, ARG, ct scan, and bronchoscopy - plus more IVs. The preliminary findings indicate it looks "suspiciously" like PCP Pneumonia. So - until they know more, here I sit - AGAIN!

A3M Marrow Drives and Steroids

2008-08-03T15:35:00.001-07:00

I just wanted to blog today to say that I finally got a chance to volunteer at an A3M marrow donor drive last Saturday and Sunday at the Southeast Japanese School & Community Center in Norwalk. I had the pleasure of meeting a fantastic young adult who has the same thing that I do (did) but she's only 26 years old. Krissy is hapa and is in search of donor. She was out there rallying for new potential donors with many of her friends and family members. She is also lucky to be supported by so many friends and family, in fact, we were able to recruit a total of 190 new potential donors!! It was an awesome drive and it felt good to be part of it! Here is a picture of Krissy and I (taken on my blackberry, so sorry for the poor quality shot!)

In other news: I had a flare-up of some gvhd or something that is causing joint pain. So, my doctor put me on a fairly high dose (50mg/day) of steroids (prednisone) over a week ago. I'd forgotten why I didn't like prednisone... I'm so spacey (yes... even more so than normal - for those of you who don't miss an opportunity to bag on me.) and am eating everything in sight. My sleeping schedule is totally messed up and I'm anxious all the time. We're tapering the dosage off little by little and I can't wait to be off the stuff. But, it is helping and most of the symptoms have dissipated.

I need you all to send good and positive thoughts and prayers to so many needing transplants or facing complications.

-Krissy, as I mentioned above, is in need of a donor

-My friend, Ann Gregory, has relapsed and is in need of an adult donor.

-Another friend, Susan Carrier (also hapa) is having some complications following autologous transplant. The doctors at the City of Hope are trying to figure out what's ailing her. In the meantime, she's feeling pretty lousy.

You can click on the sidebar to view Ann or Susan's blogs.

Thank you for following my journey. I thank God for everyday of my life and for all of you.

All Good News!!! : )

2008-07-09T11:18:00.001-07:00

I saw my doctor at the City of Hope yesterday. Although it was a long day, it was all good! My lungs have almost fully recovered from pneumonia. He put me on antibiotics for another 10 days, but says it's okay to continue with all of my summer plans! : )

I received the report from my bone marrow biopsy taken two months ago. Leukemia is in full remission. The report was clean!! Yay!!

My blood counts are stable:

WBC 3.8 (norm 4.0-11.0)
RBC 3.97 (norm 3.8-5.2)
HGB 12.8 (norm 11.5-15.5)
PLT 96 (150-350)

So, all this news is cause for celebration. I was lucky to find my donor. There are still so many people in search of a matched donor. My dear friend, Ann Gregory, underwent umbilical cord blood transplant over a year ago (for lack of finding an adult donor). Her leukemia has relapsed and she is in need of another transplant. She is of mixed race, which makes it even harder to find a donor. My other friend, Krissy Kobata, 25, is in search of a donor. She is hapa (half japanese and half caucasion) and is in search, as well. Please register to become a potential donor and save a life! There will be two bone marrow drives this month locally:

Saturday 7/19
Orange County Buddhist Church Obon
909 S. Dale Ave.
Anaheim 92804

Saturday 7/26 (3-8pm)
Sunday 7/27 (1-6pm)
SEJS Carnival
14615 Gridley Rd.
Norwalk 90605

It's so simple to register.... just some paperwork and a swab of your cheek. If you are in good health and 18 - 60 years old, there is no excuse for not registering. You really can be a hero and save someone's life!!! It doesn't get much better than that!!!

Thank you for your support. I'm lucky to be alive and thriving! Life is good! love, nancy

Recovering At Home

2008-07-02T14:25:00.000-07:00

Well, it's only been two days since I was diagnosed with Pneumonia. My doctor at the City of Hope is allowing me to recover at home. He said we'll see how I respond to the antibiotics. If I get better, I can continue to be treated on an outpatient basis. If I don't, well, let's just not go there for now....

My dear friend, Ann Gregory, is in trouble. It appears her leukemia has relapsed, but is presenting in a different way. Please send good and positive thoughts her way as she begins a second battle for survival. Click on her name on the sidebar to read her blog.

Life is precious. Enjoy each day. love, nancy

Graduation, Life & Little Setback

2008-06-30T21:32:00.000-07:00

First of all, we have been so busy with LIFE!!! : ) On June 10th, I appeared on the Price is Right Show. I was able to thank my marrow donor on National television but haven't figured out how to get that onto my blog. (I'm still electronically challenged)

Two weeks ago our youngest son, Andrew, graduated from High School. Here are a few pictures from that glorious graduation day!

Scott & Andrew

From left to right, My Mom, Mark, Andrew, Me & Marks Mom!

We just returned from a four-day trip to Central California. Our sons play basketball in a tournament in Arroyo Grande every year. We love this trip, not just because of the basketball games, but we get to visit many relatives and friends in the area. It was a great trip and Andrew's team won the championship game IN OVERTIME! What a thrill. The tournament sponsors a wonderful barbeque on Saturday evening complete with 3-point shooting contests, raffle prizes and fantastic food and fun! I had been coughing just prior to this trip and completed a course of a strong antibiotic (Z-Pak) during the tournament weekend. For some reason, it didn't seem to be helping. I figured I'd deal with my cough when I got home.

Well, I went to the doctors today and they took a little listen to my lungs and immediately ordered a chest x-ray. Looks like I have pneumonia (that's funny, I didn't feel that sick - ooops... shoulda probably stayed home from the fun weekend excursion.) My doctor at City of Hope will call me tomorrow regarding this setback. (I'm hoping he doesn't hospitalize me.)

I'll blog more when I know more. In the meantime, please accept my apologies for not blogging sooner. I'm suppose to see my doctor at City of Hope next week. I was going to blog then with results from my last bone marrow biopsy, etc... We'll see if that appointment still happens.

Please say a prayer for my friend Ann Gregory (Click on her name on my sidebar). She has been rehospitalized at MDA Anderson in Texas. She's over one year post-transplant and is experiencing some kind of complication. She's become a very dear friend of mine and I'm hoping she can recover quickly!

Take care and I'll update you on my situation. Love you all, nance

Two-Years... Whoo-Hoo !!!

2008-05-07T17:30:00.000-07:00

Yesterday, I had my two-year post-transplant appointment (a little early). I feel like a human pincushion..... but, after all was said and done (and poked and prodded), all is well.

My day started off at the lab where 6 tubes of blood were drawn. Then, after about an hour, I saw my doctor. My counts are still stable, but since we're upon two years, he performed a bone marrow biopsy (results in the next few weeks), then he needed to give me the last five, yes, I said LAST of my childhood immunizations via shots: (this was the last of three series of shots)

IPV (Inactivated Polio Virus)
HIB (Haemophilus Influenzae Type B)
Hepatitis B (#3 in the series)
Tetanus & Diphtheria
Pneumovax

After the immunizations, I checked in at the respiratory center for my dose of Pantamadine taken via nebulizer... whew.... long day.

I think all in all I was punctured around 14 times yesterday. 1 for the blood draw, 5 immunizations, 1 shot of subcutaneous morphine (in preparation for the BMB), about 6 shots of local anesthesia for the bone marrow biopsy, and the biopsy itself. I don't mind as all this was necessary. Yes, I'm just a tad sore, but it's all good. : )

For those following numbers, here are my blood counts:
WBC 2.9 (norm 4.0-11.0)
RBC 3.95 (norm 3.8-5.2)
HGB 12.6 (norm 11.5-15.5)
PLT 86 (norm 150-350)
ANC 1.7 docs want it over 1.0

Although some of my counts are still not within normal range, the doctors are not concerned. Some counts can take a long time to come back. My doctor thought now might be as good a time as any to try and reduce some of my anti-rejection medications. Specifically, he reduced my Prograf (Tacrolimus) another .5 mg every other day. I know it doesn't sound like a lot, but any move toward getting off of these pills, is a step in the right direction. This does make taking my meds a little more confusing... .5 mg in the morning & .5 in the evening every other day. The other days is 1.0 in the morning and .5 at night. Good thing I have this weekly pill organizer. I only really have to think about it once a week when I load the whole thing up. That doesn't mean that I still won't screw it all up.... ugghh...

The other big news is that I attended my second bone marrow transplant reunion at the City of Hope with Kurt, Cathy, and my mom. This was held on the City of Hope grounds on April 25th. I was able to meet up with many patients that I haven't seen in some time now. My friend, Christine Pechera, got to meet her donor for the first time. For the media coverage on Christine's meeting see http://abclocal.go.com/kabc/media?id=6104793

Here are a few of my photos from the BMT Reunion:
Here is a photo of me, next to Christine, who is next to her life-saving donor. Her parents are at the right. Christine received her transplant in July of 2006. Her donor, Kent Wong, donated his marrow in Hong Kong. It was flown to the City of Hope just like my marrow was flown from Japan.

Christine and I had rooms next door to each other at the City of Hope for some time in 2006.

Tommy Lasorda spoke at this event. The LA Dodgers is City of Hope's sponsor and has launched their "Think Cure" campaign.

To the right, is my brilliant doctor, Dr. Nakamura and his exquisite Physician's Assistant, Anna.

Below is a picture of Anna, Michelle and myself. Michelle is also a bone marrow transplant survivor and had her transplant about three years ago. Her sister was her perfect match!

Lastly, here is a photo of Marissa, one of my favorite nurses, my mom, Mae (works at COH finding unrelated donor matches) and me! What a grand time.

Thank you for continuing to follow my progress. Thanks to all of you who have registered to become a life-saving bone marrow donor.

I appreciate your six years of support. I'm grateful to all of you, to God and to my donor. I'm lucky to be surrounded by so many supportive and loving people. I'll blog when there something to blog about. In the meantime, take care & keep smilin.... love, nancy

My Hero, Dale

2008-03-21T22:12:00.001-07:00

Many of you have followed my blog for the last (almost) two years. I have frequently mentioned a little boy named Dale Inouye. Last Sunday, March 16, he went home to be with the Lord. He lost a courageous fight against ALL. He was sick for seven of his nine years but, he lived life to the fullest despite all of his struggles. He touched so many of us during his short stay here and has forever left such a beautiful imprint of his life.

He always wore a smile on his face and when I last saw him in October, I never even caught a glimpse of the burden of his illness. He was, and still is, a shining star in my eyes and will always be an inspiration to me. I'm so broken-hearted but am taking comfort in knowing that he is no longer suffering. Dale will always be my hero.

Here is a photo of me and Dale's wonderful family taken last October at A3M's Starnight. My hand is on Dale's shoulder, next to Dale is his brother Derek, then in the back row is his mom, Juliann, brother, Danny and father, Wade.

Please pray for Dale's family.

To view his blog go to: http://www.inouyeboynumba3.blogspot.com/

love, Nancy

Life is Good

2008-02-20T23:51:00.000-08:00

I'd like to start off by asking all of you to say a prayer for my little friend, Dale Inouye. He relapsed and got a boost (DLI) from his donor, which is his brother Derek. He's recently been hospitalized. Please view his blog by clicking on his name on the sidebar.

I visited the City of Hope Hospital on Tuesday. As usual, I started off with labwork, then I went to the Pulmonary/Respiratory Center for my monthly inhalation treatment of albuterol followed by Pantamadine. Finally, I saw my doctor. The labwork was back and I'm happy to say there were no signficant changes in my counts (slight drop in platelets)

WBC 3.4 (norm 4.0-11.0)
RBC 3.82 (norm 3.8 - 5.2)
HGB 12.3 (norm 11.5 -15.5)
PLT 84 (norm 150-350)

Two months ago, he allowed me to decrease my anti-rejection medication (prograf) by .5mg. I requested that we try this because I was having terrible joint pain and could no longer raise my arms above my head. He said the arthritis could be caused by the Prograf, but decreasing this prescription could cause more GVHD or rejection. He was right. The pain in my joints subsided by about 50% in my arms (but had no impact on my knee pain), however I have more GVHD on the skin on my face. So, which is the lesser of the evils??? hmmm.... I guess I'd rather not be in a lot of pain. The skin on my face is super dry and scaly in many areas, but I'm in the process of trying new steroid creams and new moisturizers. This type of GVHD is really minimal compared to other types of GVHD which can affect the liver, kidneys and digestive tract, to name a few.

So, I guess what I'm saying is that I am lucky and blessed to have faired so well following such a serious cancer and bone marrow transplant. It's been a long haul but very well worth it. I feel great and for the most part, I'm living a normal life. The only things that are different are that I'm still taking a lot of pills each day (not a big deal), I can't have any sun exposure because it causes rejection (not a big deal), I can't drink (much) alcohol (not a big deal), I have to stay away from sick people and places that have germs/fungus' like nail salons, (not a big deal ) and I can't eat sashimi/raw sushi (not a big deal). The list of things that I can do is almost limitless...

I'll still continue to get my monthly Albuterol/Pantamadine respiratory treatments, but I won't see my doctor or get blood counts until May 4th. This is amazing! This next appointment will be just a few weeks short of being TWO YEARS Post-Transplant. At that time, he'll do my two year bone marrow biopsy, give me the rest of my immunizations, and sometime just before that I'll have another ultrasound of my thyroid as they are monitoring something, which I think is probably nothing. That's the schedule for now.

My donor saved my life. All of your support has made a huge difference. Thank you so much for being on this wild ride with me. Life is good!

Love, Nancy

Happy Holidays

2007-12-18T19:01:00.000-08:00

It took having a major illness for Mark and I to realize that we haven't had a professional photo taken since our wedding over 22 years ago. Here is one family photo from our sitting.

Being 19 months post-transplant is a miracle. The leukemia is in remission and I haven't required a single transfusion in 2007 (as opposed to over 200 blood transfusions in 2006). Although my counts haven't reached normal range, I continue to recover and hope for better counts in 2008.

I saw the doctor again today and here are the long awaited blood counts:
WBC 3.3 (Normal 4.0-11.0)
RBC 3.76 (Normal 3.8 - 5.2)
HGB 12.2 (Normal 11.5-15.5)
HCT 34.8 (Normal 35.0-47.0)
PLT 89 (Normal 150-350)

I have some signs of GVHD (graft vs. host disease) or rejection so my doctor wasn't going to reduce my anti-rejection medications. He wasn't totally opposed to trying to reduce it just a little, so that's what I told him I'd like to do. I'm now on .5 mg less per day of Prograf bringing my dosage to 1.5 mg. per day. I'm suppose to call him if the GVHD gets worse and then immediately go back on 2.0 mg per day of the Prograf.

Overall, I feel pretty good. We all have a lot to be thankful for this holiday season. A heartfelt thank you to my anonymous donor in Japan. You can't begin to appreciate what your gift of life has meant to me. And to my family and friends, thank you all for your support over the past 5.5 years since my bone marrow problems began. I embrace each and every day of life.

Happy Holidays! May 2008 bring joy, health and happiness!!!
Love, Nancy

Golf Tournament for A3M

2007-11-19T15:52:00.001-08:00

Hey Golfers and readers: On December 3rd, the Orange Coast Optimist Club (OCO) is again hosting a charitable golf tournament with net proceeds being donated to Asians for Miracle Marrow Matches (A3M). As you all know, A3M is on a mission to get API's registered in the National Marrow Donor Program (NMDP) so that all those in-need will have a chance to find a bone marrow/stem cell donor. API's are severely under-represented in the NMDP, making a second chance of life very difficult for those afflicted with leukemia's and bone marrow disorders.

Here's how you can help:
1. Donate 144 smaller items for inclusion in each of the golfer's goody bags and/or
2. Donate Raffle prizes and/or
3. Register to Golf in this charitable tournament and/or
4. Become a Tee Sponsor (your name or business name will appear at a tee box on the day of the event.)

You can even ask places that you frequently visit (i.e., restaurants, shops, etc) or businesses that you work with if they can help in any of the above ways.

You can find all the information on the OCO website. Go to http://www.ocoyouth.org/ and click on Golf Tournament. You can always email me or comment on my blog if you have any questions.

To find out more about becoming a potential donor or to learn about what A3M does, go to http://www.asianmarrow.org/

Thank you once again for your continued support and for following my blog. I appreciate each of you and I appreciate every day that I am alive.
love, Nancy

Halloween Blood Counts (+17 months)

2007-10-30T22:43:00.001-07:00

Boo! Happy Halloween! Well, atleast my blood counts aren't too scary. Good thing the tech wasn't wearing a vampire costume! (Don't you think that there's something wrong with getting your blood drawn around Halloween Day?)

WBC 3.1 (normal 4.0 - 11.0)
RBC 3.78 (norm 3.8 - 5.2)
HBG 12.6 (norm 11.5 -15.5)
HCT 35.3 (norm 35.0 - 47.0)
PLT 90 (norm 150-350)

Today's appointment was a little lengthy. There was quite a bit of waiting involved but we covered a lot of ground. I had my blood drawn, waited a long time to see my doctor, got a flu shot, filled prescriptions and then had my respiratory treatment of pantamidine. I was at the City of Hope for about four hours. As you can see, my counts are stable and my doctor is happy with them. He didn't decrease any medications yet (I was hoping he'd decrease the anti-rejection drugs), but he added an antibiotic that he wants me to take for 20 days. This is to take care of a sinus and lung infection that may need that extra kick in the pants.

Thank you for checking in on me. I'm feeling good and I'm thankful for every day. Wishing you a happy and safe halloween. love, nancy

Photos from A3M's Starnight

2007-10-27T19:50:00.000-07:00

A3M held it's big Starnight fundraiser a few weeks ago. In addition to having a wonderful dinner and enjoying a great concert, I got to see many faces that I haven't seen in quite a while. Here are just a few of them:
The youngest boy is 9 year-old Dale Inouye. He is a patient fighting ALL. He is here with his two brothers, Derek (11) and Danny (16), his mom, Juliann, his dad, Wade, and myself. See my previous posting to read more about Dale's story.

To the right is a photo of Jerome, myself, and Christine Pechera. Christine had her second bone marrow transplant in July 06. We were next door neighbors in the City of Hope Hospital for a while. Jerome is searching for a marrow match so he can receive a much needed transplant. For more information go to teamjerome.org

These are just a few of the people who have been fighting bone marrow diseases. Now you can attach a face when I'm talking about some of these wonderfully strong people. Please keep these people in your thoughts and prayers.

Also, for my 22 relatives who were displaced temporarily due to the California wildfires in San Diego and Orange County, let's thank God that all your homes were spared, but more importantly, that you are all safe.

love you all,
Nancy

Pray for Dale

2007-10-25T09:38:00.000-07:00

Hi gang! No blood counts just yet. I'll see the doctor next week and probably have more information on my status.

Last December, I blogged about a little boy named Dale Inouye, now 9 years old. He was diagnosed in 2000 with ALL and underwent chemotherapy regimen. He relapsed in December 2006 and underwent bone marrow transplantation in February 2007, with his donor being his older, 11 year old brother, Derek. He's now eight months post-transplant and has again relapsed. He's again undergoing chemo at UCLA with hopes of getting him back into remission.

I often used young Dale as my inspiration to continue to be positive and look forward to a healthy future. Dale is always smiling and doing things kids should do. By watching him, you would never know he is sick but inside, he must be feeling the weight, both emotional and physical, of the illness. Dale's journey continues to be one of encouragement and heartbreak.

I've checked Dale's progress daily by viewing his blog and by contact with family friends. Please view his blog at inouyeboynumba3.blogspot.com. I believe Dale will be needing blood products, so I'll blog later on where you can donate blood or platelets.

I can only imagine the stress on Dale, his parents and two brothers, Derek (11) and Danny (16). Please say a prayer for the family. I know they appreciate your thoughts and prayers.

love,
Nancy

Joe, Amy, and A3M

2007-09-21T15:44:00.000-07:00

In the past few weeks, I was very much saddened and sobered by the passing of two fellow bone marrow transplant patients. Although I never met them personally, we dialogued through our blog sites and email over the last half-year or so. Joe Lin and Amy Wilhoite were fighting the same battles we immunocompromised patients fear. Their stories are told on their blog sites ...

http://www.joekaren.blogspot.com/
http://www.wilhoite.blogspot.com/

This underscores the importance of organizations such as Asians for Miracle Marrow Matches (A3M). As you may recall, A3M has been providing tremendous support during my five year diagnosis, bone marrow search and subsequent transplant. The annual A3M Starnight fundraiser is on October 14th at the Cerritos Center for the Performing Arts. If you can, please show your support by attending the concert. There is also a reception and dinner prior to the concert (I'll be at both!). Tickets are currently on sale for all of the above. Please contact A3M for tickets at (888)236-4673.

Also, please consider showing your support by purchasing raffle tickets or donating items for the silent auction. Call A3M for more information.

Thank you for partnering with me on this journey.

Love, Nancy

Slow & Steady Progress! (+461 days)

2007-08-28T15:41:00.000-07:00

Can you believe it's been two months since my last doctor visit? I'm now 15 months post-transplant and feeling great. This wonderful donor in Japan probably doesn't know if I still exist. She has saved my life and I'm forever grateful for her precious gift of life.

My counts finally moved up a bit. They have been stable over the last four months and finally show improvement. In fact, for the first time, except for my stubborn platelets, all my counts are now in the low-normal range. This is cause for celebration!

Without further ado:
WBC 4.1 (norm 4.0 - 11.0)
RBC 3.98 (norm 3.8 - 5.2)
HBG 12.9 (norm 11.5 -15.5)
HCT 36.8 (norm 35.0 - 47.0)
PLT 90 (norm 150-350)

For those following other important counts, I'm told my ANC is within normal range and my chemistry panel is all normal. My doctor is happy with my progress, but due to signs of GVHD (Graft vs. Host Disease), or rejection, he hasn't decreased any medications yet. I'm currently still taking 14 pills a day (originally 35 a day), but that's okay with me. I've got the medications down to a science.

I want to thank all of you for your precious support over the past several years. You've really carried me through some tough times and I'm ever so grateful. Many of you supported my family in so many ways and so many have continuously prayed for my health. Because of my donor and all of you, I'm here today and able to enjoy so many things. Andrew is starting his last year in high school. Scott graduated last year and will be starting at CSULB, School of Engineering, next week. So many milestones... and I get to be a part of it all. I thank all of you from the bottom of my heart. I'm forever in your debt. Enjoy Life.
With love, Nancy

100% Engraftment - Happy July 4th

2007-07-03T15:52:00.000-07:00

Does anybody remember what I did one year ago on July 4th? I was finally released from the hospital into the "Village" units on the premises of the City of Hope Hospital. (Of course, after two days, I went straight back into the hospital for another 18 days, as I remember.) But the point is, that this July 4th marks another new meaning for "Independence Day." I'm free of my diseased old marrow!!! According to my doctor at today's visit, I'm 100% engrafted with my donor's healthy young marrow.

I can't believe I went another two months without seeing my doctor. Here are my numbers for those interested:
WBC's 3.3 (norm 4.0-11)
RBC 3.62 (norm 3.8-5.2)
HGB 12.2 (norm 11.5-15.5)
HCT 34.2 (norm 35-47)
PLT 77 (norm 150-350)

My doctor is happy to see my numbers are staying stable. Some counts will take longer to respond than others, like my platelets. Seems I have a little GVHd (rejection) so he didn't reduce or take me off any of my prescriptions. But, the good news is that he didn't add any either! : )

I was a human pin cushion again today. First my blood draw then my second round of four immunizations: Heamophilus Influenzae (flu), Hepatitis B, Tetanus & Diphtheria, and Polio. Needless to say my arms ache a little bit.... but that's nothing when you consider what I've already been through.

Several years ago, when I was first diagnosed, I wondered if I'd even be here to see my boys graduate from high school, move on to college, etc.

Well, I'm happy to say that Scott has graduated from high school and we're all happy and proud of him. Over the past few years, Scott and Andrew have both been faced with additional challenges due to my illness. I'm proud of both of them as it has not been easy. I'm so happy that we were all here to celebrate Scott's special day.

Thank you again for your tremendous support over the years. I couldn't have come this far without such a wonderful support system. I'm eternally touched by all those who have helped us out. I can never thank each and every one of you enough! I love you all. Forever, Nancy

1 YEAR POST-TRANSPLANT - YIPEE

2007-06-01T08:13:00.000-07:00

This is a huge milestone. Can you believe it's been a year? In some ways, it has gone by so fast and in some ways, it's been a long, long haul! I wanted to post right on my 1 year birthday but unfortunately, I was ill. Nothing serious, just a fever which threw me for a loop. All is well now. I don't think I've had the nerve to show my bald head, but now that I have a head of hair, I want to show just how far we've come. So here it is... Photo with Mom from Fall, 2006 (my face is swollen from the steroids) vs. May, 2007!
After this one year photo was taken, I got my first real haircut! Scott told me to save a few locks of my baby hair. I have about half the volume as before and it came back wavy. I think it'll come back straighter after some more time passes.

In early May, I had my one year bone marrow biopsy. This was done on the same day as I received the first series of my childhood immunizations. I was a human pin cushion that day. I received five separate immunizations (tetanus, flu shot, pneumonia, hepatitis B, & Polio) plus a painkiller shot and local anesthesia for the bone marrow biopsy not to mention the biopsy itself. I think I was poked about 10 times in 10 minutes. But, the good news is that preliminarily, my marrow appears to be 100% donor. This is not to say that I still won't have GVHD (rejection) or other complications, but it's good that it's 100% engrafted. This is cause for celebration!! I tease Scott and Andrew that through blood tests, I will no longer test as their mother so they have to quit asking me for money. :)

I'll have more information about the bone marrow biopsy when the final report is done. We're hoping for no cancer cells and good readings in other areas. I still go once or twice a month to the City of Hope. Every month I get treatment to prevent pneumonia called Pantamadine. It's delivered into my lungs via a nebulizer. This takes about half an hour. Most transplant patients can take the oral medications to prevent this, but I'm allergic to all of these medications. I'm still under the care of Dr. Nakamura, my hemotologist-oncologist, and an endocrinologist. I'll keep you posted.

Thank you again for following my blog. I want to thank everybody for their continued prayers and support. I couldn't have made it without all of you! Love you all, Nancy

11 Months Post Transplant

2007-05-11T14:52:00.000-07:00

Sorry for not posting for so long. I'm 11 months post-transplant and feeling real good. My first birthday is coming up on May 25th. This is a milestone as far as bone marrow transplants go. Two weeks ago, I got to attend my first bone marrow transplant reunion at the City of Hope and was given this huge badge to wear showing 11 months! This is a big event that I've looked forward to attending for over three years. I heard they expected close to 8,000 people. The crowd was filled with nothing but miracles. I'm so glad to be on the other side of the transplant and not still "searching!" Thank God for my donor in a faraway land, without her, who knows where I'd be right now or if I'd be. Here is a photo of the doctor credited with saving my life, Dr. Nakamura and his Physician's Assistant, Anna Teotico. They were awesome as was the entire nursing staff and blood donor bank people who collected hundreds of units of blood and platelets on my behalf. Did anyone notice that I have hair now??? Gosh, I think I need a haircut!

To the left is a photo of two of my friends who also received bone marrow transplants. Michelle, on the left of me, received her transplant from her sister in the fall of 2005. Donna, on the right, received her transplant from an unrelated donor one month after me. Below, Christina Pechera received her second transplant one month after me. We had hospital rooms next door to each other. I'm happy to report that all four of us are doing pretty well.

Some of my counts are in the "normal" range now. As of May 8th my RBC's were in the low normal level at 3.83 (norm 3.8-0-5.2) and my HGB was 12.5 (norm 11.5-15.5). My WBC's were low at 2.9 (norm 4.0-11.0) and my Platelets were low at 70 (norm 150-350). I haven't had a transfusion since Scott's unit in late October!!! yipee... Because of my over 200 transfusions last year, my ferritin (iron) is extremely high at 1970 (norm 6.2 - 137.0). They are talking about using expensive prescriptions, but my doctor prefers to "bleed me out." This means that I'll be "donating blood" to get my iron level down. (Of course, since I've had this awful disease, the blood will be disposed of.) This may be done once a month for a year in order to get the results needed. So far, we're just talking about it. Nothing's for sure.

On my last posting, I mentioned friends of mine, Ann and Chris Gregory. Their insurance company turned Ann's cord blood transplant down but after months of appeals, lawyers, letters to government officials, they finally got the word that insurance will approve her life-saving cord blood transplant. She will receive precious umbilical cord stem cells on May 30th. Congratulations Ann! It'll be tough but you can do it! Just take it one day at a time and stay positive!! : )

You must know that life is more precious than ever before! It's Mother's Day this weekend and one year ago on Mother's Day I was admitted to the hospital to start my preconditioning in preparation for my May 25th transplant. What a year it has been. I want to wish everybody a Happy Mother's Day. Thank you for your continued support! Love, Nancy

Update & Help a Friend

2007-03-29T16:45:00.000-07:00

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

9+ months Post-Transplant : )

2007-03-07T15:33:00.001-08:00

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

Happy New Year!

2007-01-11T13:56:00.000-08:00

I had my first appointment of 2007 this past Tuesday. While my counts didn't change all that much from almost six weeks ago, my doctor is still happy with my progress. My platelets dropped a littls to 90 (normal 150-350), my red blood cells are at 3.61 (normal 3.8 - 5.2), my hemoglobin and white cells both hit the low normal range with my white count at 4.1 (normal 4.0 - 11.0) and my hemoglobin at 11.9 (norm 11.5 - 15.5.)

My doctor has extended the length of time between appointments again. I won't see him for two months (early March.) My appointment after that will be in May when he'll do another bone marrow biopsy and possibly start giving me the childhood immunizations.

I want to thank all of you again for everything you've done for us in 2006! We are eternally grateful for all of the support! We wish each and every one of you a very Happy and Healthy New Year. With love, Nancy

A Year-End Thank You and a Plea for Help for a Child!!!

2006-12-19T18:54:00.000-08:00

Well, no news is good news as far as my health is concerned. I continue to feel good and have completed all my holiday tasks! I'm ready to enjoy the holidays and have so many people to thank for all their support over the past half year or more!Words cannot express the gratitude for all the things, big and small, which helped me and my family through this difficult year. I can tell you that this holiday will be a very special one! Also, many thanks to the Rafu Shimpo for printing my story. You can view it on the web at rafu.com

Now, I am so eternally grateful for my donor and I know all of you have done a lot to help me out, but we have to save another life. Eight year old Dale Inouye is in serious condition. He was diagnosed with ALL in 2000 and underwent chemotherapy. This month, December 2006, he relapsed and needs a marrow transplant right away. Dale's future depends on you, a marrow match that may only be found in his ethnic community. All it takes is a swab in your cheek - No blood sample! Please go to www.asianmarrow.org/drives/index.php or call A3M toll free at (888)236-4673 or email at A3M@LTSC.org. Drives available weekdays 9:30am - 5:00pm at the A3M office plus various locations as listed on the website. See his blog site for more info: inouyeboynumba3.blogspot.com

Thank you all for your continued support of our family and A3M. Our efforts will pay off and our hope is that everyone in need find the one person who can save their life!

We are blessed and know that the New Year will bring about continued recovery for me. Scott has received his first acceptance to a college (Cal Poly Pomona) and is waiting to hear from others. He'll be starting college this fall. For those of you who don't know, we also hope for better luck with our cars in 2007 - three of four of our vehicles were in accidents over the past six weeks.... one accident was minor, one was total loss and this weekend my van was rear-ended by a driver with no insurance while Scott was driving. We are thankful there were no major injuries. From our family to yours, a very happy (and safe!) holiday season!

With Love,
Nancy, Mark, Scott & Andrew

No More Hickman Catheter

2006-12-04T16:53:00.000-08:00

On May 12th of this year, I went through surgery to have my Hickman Catheter inserted. This catheter has been used for the past six and a half months for receiving transfusions of blood and platelets, getting my blood tests drawn, receiving all the mega-medications in the hospital, receiving the precious bone marrow from my donor, receiving hydration, nutrition and many other products. Due to the lack of use, they finally removed it this past Friday! At every appointment, now they'll have to draw blood from my veins again. But that's okay. I'm happy to be free from these lines which protruded from my body. I can't tell you how often I caught them on things and made the exit site bleed. That's not a good thing.

The other good news is my platelets are continuing to climb along with my hemoglobin. On Friday, 12/1, my platelets were at 98! My Hemoglobin was at 11.2. These counts haven't been this good in over a year. Actually, when I was first diagnosed as having a blood or marrow disorder over four years ago, my platelets were right about where they are now!! Amazing! Now let's get them into Normal range and get on with our lives!!!

Talking about getting on with our lives, our oldest son, Scott, turned 18 yesterday! How on earth can he be 18 years old already? And how is it that I've only aged a fraction of these 18 years in the same amount of time? (no, not 17/18! ha ha) I'm proud of Scott. The past few years have been a little rough for all of us, but he's done fine and has grown stronger by going through all of this. He's looking forward to graduating this summer and starting college next fall! He is strong in physics and may pursue an engineering degree. He also loves art!

Thank you for following my blog. In case I don't blog for a while, it's because I don't have an appointment for a whole month!! woo hoo..... yes, a whole month. I'm still suppose to be careful and try not to get exposed to people who may be sick. I can be found wearing my mask religiously whenever I'm out and about. To help with limiting my exposure, Mark & I have completed most of the Christmas shopping (and most of the wrapping.) I guess I'm ready for the holidays, that's something I wasn't sure I was even going to tackle this year... but I was able to do it with ease (with Marks help)! I feel fortunate that this year is ending on a good note. I plan to continue on this road to recovery in 2007! I thank you all for your support during this past year! My family and I thank you all from the bottom of our hearts! We couldn't have done it without all of you!

We wish you a happy holiday season and Thank you, Thank you, Thank you again!!!
love you all, nancy

So Much To Be Thankful For!

2006-11-22T16:38:00.000-08:00

We have so much to be thankful for on this Thanksgiving week! I'm ever so grateful to my donor! Without her marrow, at best, I would probably be extremely ill right now. I thank God and all of you who helped my family and I through this very tough year. We were all supported by you in so many countless ways. Many of you spent hours getting to the City of Hope and spending hours in the donor center donating platelets and whole blood to me (I received over 200 transfusions, most of which were directly donated by you!) Many of you brought meals to my family over the entire summer and into the fall! Many of you sent cards, phoned us, sent emails, gifts, and prayed for me daily! Many of you gave rides to Scott and Andrew and took them to basketball tournaments near and far! Many of you worked the bone marrow drives over the past several years donating your precious time and energy to help find a donor for all of us who were in need. Many of you spread the word for others to join the National Marrow Donor Program and also to give blood/platelets! For all of this and many other selfless acts of love, I'm eternally grateful.

I went to the City of Hope yesterday. My counts are still rising and things are looking pretty good. I haven't required a transfusion since September 26th, that's two months! I had another "personal best" record for my platelets at 79 (norm 150 - 350), my White Blood Count was at 3.7 (normal 4.0 - 11.0), and my Hemoglobin was 10.4 (normal 11.5-15.5). It's been a slow and steady climb. It's heading in the right direction and I'm hoping for continued progression. Next month, the surgeon is suppose to remove the Hickman Catheter from my chest and after that, my appointments may be one month a part! That'll really be something. My doctor has cut my steroids (prednisone) in half again. If this works out, he'll start reducing the amount of ant-rejection drugs that I've been taking.

I'm now six months post-transplant! I think back to one year ago when I was so transfusion dependent and had no donor in sight! I think about the events that transpired before my transplant... such as;
- before transplant, receiving numerous blood transfusions and injections (in my
stomach) to help control the illness
- two donors being located and becoming "unavailable" at the last minute,
- all the potential donors who were called and couldn't be located,
- all of the donors who tried to pass the secondary testing but didn't.
Then I think about this special 23 year old girl in Japan who so generously gave her marrow to a perfect stranger overseas. What an act of kindness and humanity. Unless the international laws change, I shall never be able thank my donor for saving my life! I think about the tough hospital stay which is quickly becoming a blur to me. I think about how good I feel now and how much I have to be thankful for. I'm sure that I'll continue on this road to complete recovery. I'm looking forward to the things I want to do in the future. What a difference a year can make!

Thank you all again for your support! A Very Happy Thanksgiving to all of you! with love, nancy

Steadily Climbing !!!

2006-11-07T19:36:00.000-08:00

I can't believe that I haven't blogged or seen the doctor in two weeks! My visit today was good. My counts are slowly climbing! We're experiencing progress and I'm happy to report that my platelets hit a new all time high since transplant of 67 (normal 150-35), my hemoglobin is also up to 10.8 (normal 11.5 - 15.5) and my white cells are steady at 4.0 (normal 4.0-11.) These are decent numbers and I'm hoping they'll be even higher in two weeks when I visit the City of Hope again.

Around the first of December, since I'm no longer needing so many, or hopefully, any, transfusions, they are planning to remove the Hickman Catheter that I've had since May 12. The Hickman Catheter has required some upkeep; flushing each of the two lines daily with heparin after sterilizing the caps, changing the caps once a week, and changing the dressing where the catheter enters my body once per week. Even though it has required a lot of attention, this catheter has really been a lifesaver for me. The nurses have drawn all my blood tests from it, I've received every transfusion through it, I received the donor's bone marrow through it, and all those bags of various life sustaining products which hung on my I.V. tree in the hospital were all infused through this catheter. After they remove it, at every visit, the nurses will have to find a vein to draw my labs and get my counts. My veins are very small so usually they have to use the veins on the back of my hand. It once took seven sticks (attempts)to find a vein in one sitting and I was in tears. I think I'll miss my catheter, but I know it's time for it to be removed. The less you use the catheter the more chance of infection there is. So, it's really a good sign that my doctor feels it's time to remove it.

Thank you for waiting patiently for me to blog this time. Since I didn't have an appointment for two weeks and there was nothing earth-shaking happening, I didn't blog between doctor visits.

I'm so thankful that I'm not requiring transfusions and I'm ever so grateful for all of you who donated or tried to donate your blood and/or platelets from May until just recently. Saying "Thank You" seems so small, so inappropriate under the circumstances, but I don't know how to show my deepest appreciation for such an act of kindness and love. So even though "Thank you" isn't enough, know that you have brought me to this point with your elixir of life! My deepest appreciation to all of you!!!!

I also must thank those of you who supported my family and I in other ways over the last almost six months! It has been quite an ordeal for all of us, but many of you really hung in there as if you were traveling on this journey right along with us. I can't tell you how much I appreciate all the wonderful meals that were bestowed on my family during my absence (and even when I came home from the hospital), all the emails, cards, rides for the boys, thoughts, and prayers! I love all of you and thank you all for the outpouring of support during this other difficult period. Love to all of you! Nancy

Making Progress

2006-10-24T15:03:00.000-07:00

We're still making small strides! : ) I'm happy to report that we have a new high for my platelets which came in today at 44 (normal 150-350.) See, testing my platelets by running into stuff and cutting myself hasn't hurt my platelets one bit... : ) (I know, you're all thinking maybe my counts would be higher if I would just sit still so I won't get bruised or cut. Oh, now what fun would that be?) Anyways, my white count went into the low normal level at 4.0 (normal 4.0 - 11.0.) My hemoglobin stayed about the same as last week at 10.2 (normal 11.5 - 15.5.) Overall, my doctor is happy with the progress over the past several weeks. We're going in the right direction and even though it's taken a while, it's moving up! As we get closer to normal counts, he'll reduce the anti-rejection drugs. For now, he's cut my prednisone (steroids)in half again and made my appointments two weeks apart, YES, I SAID TWO WEEKS apart! This is a first since my transplant. I've also now gone one month without any transfusions! Woo Hoo...

Speaking of prednisone; some of my friends saw me and I think they were a little shocked at my face. I forget to mention things.. the prednisone has made my face puffy (or was it the Marie Calendar pies?) Steroids will do that, so if you see me don't be shocked if I look a little ... well, swollen in the face.

Since I won't have another doctors appointment for two weeks (keeping my fingers crossed as I write this), don't be surprised if I don't blog for a while. I'll blog when I have something to report, good or bad. If you don't hear from me... no news is good news...

Thank you for keeping up with my progress via this blog. Thank you all for your positive thoughts and prayers. I love you all... nancy

Breaking Records Again!!! : )

2006-10-17T16:49:00.000-07:00

We're breaking records again folks!!! Today, my platelets were at an all time high since transplant of 31 (normal 150-350) as was my hemoglobin at 10.3 (normal 11.5 -15.5). I've now gone three weeks without any transfusions of platelets or red blood cells! Not only is this the longest I've gone without transfusions since my transplant, but also the longest I've gone without transfusions for the past 13 months!

Here are my other counts which did not break any records, but are still respectable; White count is at 3.3 (normal 4.0-11.)which is low, but still okay and my red blood count is at 2.97 (normal 3.8 - 5.2.) Even though all my counts are still below normal, they are moving in the right direction and for this, we are thankful! I'd like to thank you for your continued thoughts and prayers as I continue in my recovery.

Also, our thoughts are with all of our relatives and friends who experienced a fairly large earthquake in Hawaii this past weekend. I'm glad you are okay and I hope the clean-up isn't too bad. Thank you also for following my blog from Hawaii.

I love you all and you must know that you've been instrumental in getting me through the transplant and post-transplant process. I've still got a long way to go, but slow and steady, we will beat it! Thank you again. With love, nancy

Armed with Face Mask and Hat/Support A3M

2006-10-11T13:49:00.000-07:00

No news to report in the way of blood counts since I won't have another appointment until next Tuesday - yeah! But, as I did my marketing this morning, I realized how many people stare at me. I am still wearing my super thick face mask and hat since I can't have any germs or sun exposure (the sun causes GVHD or rejection.) It's kind of funny really because people don't know whether or not you're contagious so some people steer clear while others look like they feel sorry for you. The kids are really funny because they stare as you are going by, but they are well-mannered, as I haven't heard a one ask their parent any questions yet. I'm sure they do once they turn the corner.

I was in the bank with my face mask and hat pulled down low (only my eyes were showing.) I saw the teller take a double-take of me, at which time I realized that she was probably wondering if I was going to hold her up! So I had to laugh, and I asked her if I scared her. She replied "no" and a little nervously glossed it over and asked what had happened to me. It's probably not very nice of me, but kind of fun to observe peoples reactions to my appearance. I think I'll slow down to enjoy peoples responses a little bit more. : )

Most of you are aware that for the past several years we've worked with A3M in registering potential donors into the National Marrow Donor Program. Many of you have donated precious hours working the marrow drives in hopes of finding me and others in need a suitable donor. A3M has been so instrumental in helping me through the transplant process. They were there for me before, during and even now answering questions I have had along the way. This weekend is another opportunity to support A3M in their endeavors. On Sunday, October 15, they will have their annual Charity Concert. Although the dinner tickets are sold out, there are still concert tickets left. You can see Lani Misalucha with the Society of Seven at the Cerritos Center for the Performing Arts, 7 PM! Plus, there will be lots of fun with the raffle tickets and silent auction. Call for tickets: 800)300-4345.

That's it for today... thanks for reading. Good Luck A3M for a successful evening filled with fun and enjoyment! I have to miss the big event this year because I'm still recovering, but you can bet I'll be back next year with bells on! love, nancy

No Transfusions!!!

2006-10-10T18:30:00.000-07:00

What's this??? Still no need for transfusions! Hallelujah! Even though I didn't break any more records just yet, my platelets were still holding at 23 and my hemoglobin at 9.8. I did not need any transfusions today and my doctor has changed my appointments to once per week!!! Wow, what's a girl to do? So, if I don't update my blog for a week, you'll know why. Mom and I celebrated today at Marie Calendars by buying two pies during their $5.99 per pie, October Special. Yum... chocolate cream!!! No, it wasn't one for her and one for me... : ) We didn't eat lunch there because I'm still not eating out. We just picked up our pies and ran!

Since there is now life after my doctor visits, I came home and continued work on my stacks of medical bills. Seems there are many disparities between the statements I receive from the City of Hope (COH) and the Explanation of Benefits I receive from my insurance company. I've been working feverishly to sort them out but need COH to also work it out on their side, which they are trying to do. So far, I've been correct on the errors also made by the Medical Group billings (doctor bills.) The hospital bills are another story but I must say, my accounting background has helped. We'll get it all straightened out very soon.

The other thing that happened today was that my doctor cut my prednisone (steroid)prescription in half. I was taking 20 mg. per day and am now down to 10 mg. Maybe I won't inhale those pies after all. (Steroids do effect your appetite... I should know, I feel like I eat all day long.) They had me on the steroids to help with the Graft vs. Host Disease (GVHD) or rejection. (They actually had me on 60 mg. per day when I was in the hospital.) Hopefully, my symptoms will not reoccur when I cut back on the medication.

Thank you for keeping up with me. Love you all, nance

Breaking Records

2006-10-08T19:11:00.000-07:00

I had an appointment on Friday at the City of Hope. I'm glad to report that all is still well! We're breaking records here folks! : ) I posted my highest platelet count again at 27 (normal 150-350) by myself. My hemoglobin dropped a little but was still good at 9.2 (normal 11.5-15.5) and my white count is still doing fine at 3.0 (normal 4.0-11.) Since my transplant in May, this is the longest period of time I've gone without a transfusion. It has been over a week and a half since my last one.

I hope to continue on this path. I'm still being careful about what I eat, washing my hands, wearing my mask, and being exposed to the public. It's kind of sad, but I actually enjoy my infrequent trips to the market, bank or post office. I haven't gone out much more than that. I don't enjoy going to the City of Hope twice a week, but, that's way better than my daily visits or every other day visits which I endured over the past six weeks. I'm looking forward to the day when I can go to the hospital once a week and eventually once every other week! That will really be something! : )

I want to thank all who have generously donated their blood products to me. You sustained me over the past 4 months. I hope I'm not saying this prematurely, but, I hope I won't need too many more transfusions. If you would like to continue to donate blood/platelets at the City of Hope, you can donate in my name. There is a blood shortage, so if I don't use it and the product gets close to the expiration date, they will use it on someone else in need. Otherwise, don't feel obligated to rush out and give blood or platelets as I am hopefully clear of whatever caused the six-week critical drop in my counts. Remember, whole blood lasts over a month and platelets last only a few days. If my status changes and I do require transfusions again, I will let you all know via this blog site. My sincere thanks to all who helped me in this way. This was a great gift of life and I'll never be able to appropriately thank all of you who spent hours in the donor center and hours on the road in order to help me out! I also want to thank all of you who spread the word about my critical need and sent friends and family to the donor center. You are truly my heroes!

My next appointment is on Tuesday. I have twice weekly appointments now, so please don't worry if I don't blog more than twice each week. Thank you for all your thoughts and prayers. With love, nance

Continued Good News!!! : )

2006-10-03T22:07:00.000-07:00

Well, it seems I did turn the corner.... no transfusions for a whole week now!!!Thank you for all your wonderful thoughts and prayers!!!

My platelets were at 22 (normal 150 - 350) this morning (went up 2 points by themselves since Sunday!) My hemoglobin also went up by itself again. It was at 9.1 on Sunday and today my count was 9.6 (normal 11.5 - 15.5.) The white count is still bouncing around a bit, but today it was at 3.5 which is just fine with me (normal 4.0 - 11.0.) Although, these counts may seem low, which they are, let me remind you where I was for the last six weeks ... platelets <5 to 12, hemoglobin in the 7's and 8's... so this is a definite and welcome improvement. I hope to continue this uphill trend and eventually climb into the normal ranges! : ) I know it can take awhile but I plan to get there!!!

I saw my doctor today and asked about my possible attendance or appearance to an upcoming family reunion. Since, I'm just recovering from a possible virus which caused so many problems with my blood counts, he recommended not attending such a function due to exposure to many people at once. My immune system is very poor still and I'm very susceptible to catching anything around! So, Sagara Family, sorry.. but the doctor has spoken. I'll be with you in spirit! I know you'll all have a fantastic time!

Thank you again for following my blog and for your continued prayers. As always, I feel so fortunate to be supported by so many caring and loving people. You've all helped me stay positive and focused on recovering! I love you all, Nancy

Another Good Day

2006-10-01T20:47:00.000-07:00

Hey, whose blood counts are these anyway??? I had another good day at the clinic today, Sunday, 10/1. Mark took me in and we waited for the counts. My platelets held at 20! The nurse wanted to give me a unit of platelets but I told her this was a good count for me. She was afraid she'd get in trouble if she let me go without a platelet transfusion. I assured her she wouldn't be in trouble. The other amazing thing that happened was my hemoglobin was 9.1, which is still low. But, for the first time in six weeks, my hemoglobin went up by itself without having a red cell transfusion. My hemoglobin level on Thursday was 8.5 and I turned down the transfusion as it was borderline. Since they left it up to me and since I was feeling good, I wanted to see if it would hold on it's own. I was right, it did!! : )

I pretty sure I've turned the corner on whatever was causing the low platelet and hemoglobin counts. I've always been optimistic that this would pass, but it took longer than I had hoped. Now, I can resume recovery. Yipee!!!

Thank you for your support! You've all been patiently waiting for me to recover and resume a regular schedule. I still have to be very careful, especially as flu season is upon us. I need to stay away from crowds and I still wear my mask when I'm in public, which is hardly ever (I might try just a quick run to the market when it's not crowded.) My immune system will be poor for the first year post-transplant and maybe even longer than that. In fact, I think I wrote before how I will probably get all my childhood immunizations again at or near my one year post-transplant appointment. So, thank you for traveling on this journey with me and for your patience. I, too, have learned to be patient through this process. Love you all, nancy

A Good Day

2006-09-30T16:23:00.000-07:00

Yesterday was another good day at the clinic. I checked in, waited a while before they took my labs, waited for the those results and found out that I still am maintaining a platelet count of 21 !!! They want to see if I can hold at this level by myself, so I didn't get a platelet transfusion. I didn't need a red blood cell transfusion yet (borderline) and I turned down the magnesium transfusion since I wasn't getting anything else and I promised to take an extra magnesium pill !! I left with no IV's !! Woo hoooo...

I'm still hoping that I turned the corner on the whole low platelet thingy (that's the official medical terminology for what I had.) I had the problem since mid-August. I go back tomorrow, Sunday, to get my labs drawn and have possible transfusions.

Have you ever seen a baby monkey? My hair is starting to grow in a little bit, and it is growing straight up kind of like baby monkey hair. Only, it doesn't seem like hair, it seems more like fuzz. It's very short and I hear it's going to take more than a year before I can do anything with it. Hair grows back at different rates and thickness, fullness, etc.. depending on the type of chemo the patient had to undergo. Since my chemo was the strongest, it's growing back very slowly and sparse. I think someday, I may even accomplsh the dreaded combover.. ha ha

Thank you for continuing to follow my progress... love you all, nancy

Hoping I'm Turning The Corner

2006-09-27T20:35:00.000-07:00

Yesterday, Mom and I spent a good part of the day at the City of Hope. I needed an infusion of Magnesium again, but the good news was that my platelet count didn't drop all that much from two days prior. I started with a platelet count of 21 !!! Even all the nurses in the clinic were a buzz about this! I'm hoping I'm turning the corner to this whole platelet problem. I took one unit of platelets anyway in hopes of getting a big boost since the platelets were Scott's and perfectly HLA and type matched. Thank you Scott!!! I got a boost to 37! Also, we're hoping to not come in until Friday! Wow, two days off!!! Woo Hooooo!

I want to call Scott my hero, but I realize that you are all my heroes. Thank you for the tremendous amount of support!!!! I'll never be able to appropriately thank all of you for your blood/platelets, meals, cards, emails, phone calls, thoughts and prayers! love you all so much, nancy

Four Months Post-Transplant

2006-09-25T10:12:00.000-07:00

Mark and I spent Sunday morning at the clinic again. It was the shortest visit in recent history lasting just over three hours! :) I checked in and they drew my labs right away. My platelet count started at 12 and with one unit of HLA matched platelets LC63637 it spiked to 29. They let me go after the last count was back! Since I received "the works" on Friday, I didn't need red blood cells or magnesium. I got to spend the afternoon and evening at home. (After a clinic visit I usually arrive home at or after dinner-time.)

Last Friday, I forgot to include in my blog that I received a unit of red blood cells unit #63587. That helped me not need red cells yesterday (Sunday)! Thank you!!!!

I really want to thank you for your platelet and blood donations! You all have helped so much in sustaining me over the past four months. Yes, today I'm four months post-transplant! I do realize that the City of Hope Hospital is not close to anybody. I know that the traffic is horrible and know how long it takes to give a unit or two of platelets or whole blood. I appreciate all of you who have traveled from near and far to directly donate your blood products to me. I wish I can thank each and every one of you in some way. Please know that I'm forever appreciative and may not be here if it weren't for all of you.

My white count is still hovering just below or at low-normal level which is good. We're just waiting for the red blood cells and platelets to come up. We just have to be patient.

Thank you again for being so supportive. I feel fortunate to be surrounded by so many loving friends and family. love you all, nancy

Waiting Out The Platelet Problem

2006-09-23T17:35:00.000-07:00

I still continue to receive matched platelets every other day. Yesterday, Friday 9/22, I started with a platelet count of 5. They infused me with a matched product that the City of Hope purchased from the American Red Cross. My platelets went to 17. Then they chased that with my mother in law's platelets which spiked to 33! Yeah... go mom. I also received a unit of red blood cells from the blood bank at City of Hope and an infusion of magnesium. It was another long day at the clinic, but I since I got the "works" I won't have to return until Sunday.

This platelet problem is going into it's sixth week. In hopes of retaining a decent platelet count, we're trying cutting down on some of the medications and increasing others to see if we can find a good balance. The doctors are still running tests to see if they can pinpoint the cause of the platelet destruction and platelet refractoriness. The problem can be one of maybe 200 different viruses or a reaction to something else. They can't possibly test for all these viruses but they are doing their best to isolate it.

Thank you for continuing to follow my blog. Thank you for your continued thoughts and prayers! love you all, nancy

Forever Optimistic

2006-09-18T22:45:00.000-07:00

Well, I thought I was improving. My counts this morning (and bloody nose) tell me otherwise. I started with a platelet count of 7 again today. They transfused me with a unit of direct donated but non-HLA matched platelets and my count went to 19 (LC63500 -Thank you). That was a good boost from a non matched unit. Then another unit was just finished being processed so they gave me an HLA matched platelet unit #LC63504 which boosted me to 35. They told me if I took a red blood cell transfusion today, I would not need to come back tomorrow unless there was any bleeding, so I got a unit of packed red cells - also directly donated LC63569. Thank you so much for all of the donated blood products. You are all holding me together!!! Additionally, I received magnesium by IV and we called it a day (something like an eight hour day!)

After leaving the hospital, Mark and I went down to the donor center where Mark's mom was donating platelets for me. I was finally able to meet some of the awesome nurses that you all have told me about. Most of them know about me because of all the support I received from all of you, but I haven't gone in there since before my transplant in May. It was a pleasure to meet your favorite nurses.

Unless I have more bleeding problems, I hopefully won't need to go back until Wednesday! I hope the doctors can figure out this platelet problem. It's very frustrating and draining spending long hours at the hospital. All I'm doing is lying there in a bed or chair that reclines, getting IV lines changed in and out, and getting premedications to different IV's, but for some reason it's exhausting.

My prescription refill problem from Saturday is finally resolved. My delivery came this morning when I was at the City of Hope. Thanks Janice for loaning me your anti-rejection pills. I've sent some back to you in the mail.

I thank you all for keeping up with my blog. Most people think that since I'm home, I'm doing well. Actually, I would be doing quite well if it weren't for this continuing platelet crisis. I bruise very easily but most bruises are on my arms and legs. I still have to be very careful. I know this will pass... it's just taking longer than I'd hoped. Take care all, love, nancy

A Sign of Improvement : )

2006-09-17T16:52:00.000-07:00

As promised, yesterday, the blood bank had two units of "B" matched platelets ready for me. My reading first thing in the morning was 9 again. After the first unit of platelets were transfused (lC63462) my count went to 21. That's the highest it has gone in a long time. Since I wasn't going in today, Sunday, they infused the other unit of platelets (LC63472.) After that, my count jumped to 39! I'm thinking that maybe my platelet problem is starting to turn around. I'm hoping that whatever it was that was causing the depletion is finally clearing. My count has not gone up to 39 in over a month even with matched platelet products.

I believe these two donors were found by the City of Hope through their donor program. I don't believe they were friends or relatives but I could be wrong. At any rate, I'm thankful to all who have been trying to give blood products. It was very important over the past month that I got some that were matched. Due to high risk of hemorrhage, I would have ended up in the hospital if the platelet transfusions didn't help!

I'm on 28 pills a day and have kept up with my timing and dosages of my medications with the help of a journal. Keeping up with the refills is another job. Some of my medications are by mail order and the City of Hope won't fill the prescription. So, I make sure that I order well in advance so as not to miss some important medications. I triple checked that I would receive a delivery of one of the main anti-rejection drugs on Saturday. I was assured that it would arrive and I even checked to see that it was billed to Blue Cross online. Well, guess what? It didn't arrive on Saturday as expected. I only had enough pills to get me through half of Sunday. My friend, Janice Wong, came to my rescue. She is 11 months post transplant and takes the same drug. She met me and loaned me a few pills to hold me over. THANKS JANICE! You Rock!!! By the way, Janice looks fantastic!!!

Thank you all for hanging in there with me. These past few weeks have been trying for me and for those transporting me to and from Duarte. There have been near daily appointments and most of them last all day long! It's really quite exhausting. Mark will take me tomorrow... we'll hope for a starting platelet count in the teens or higher!!!??? Thanks again! Love you all, nancy

Long Day

2006-09-15T21:04:00.000-07:00

Well, it was another very long day at the City of Hope. Mom picked me up at 7 am and Mark spun by after work to take me home. We got home at 7:30 pm. The days get so long I told mom she should leave since Mark was picking me up. I think she finally left at 2:30 pm.

The good news is my white count is still holding at or around the low normal level. My platelet count this morning was not at the rock bottom reading. It was at 9 and after one unit of unmatched HLA platelets it went to 14. They were not going to infuse another unit of platelets because two HLA matched platelet units are to be ready tomorrow (Saturday) morning. So, I'll be in there again at 8 am tomorrow... whew. I also received a unit of A+ packed red cells today LC -63488, which was directly donated yesterday by my cousin Eileen Kato. Thanks Eileen. It couldn't be any fresher!! : ) They also infused me again with a product called GammaGard which are antibodies to help my immune system. This infusions usually lasts 2 1/2 to 3 hours. Hopefully, tomorrows appointments aren't too long.

I can't believe I'm going in almost every day again. My doctor asked if I'd like to stay at the village since I have so many appointments. Obviously, I declined! I'd much rather be home! The drive isn't that bad and I need to be with my family.

Thank you for keeping up with my blog. Thanks to all who have donated red blood cells and/or platelets. Thanks to everyone for all of your support. love, nancy

Platelet Problems

2006-09-14T22:00:00.000-07:00

I started today with a platelet count of 7. The donor center indicated that one unit of HLA matched platelets were ready and that a second unit from the same donor would follow, if needed. I got a bump to 13 (LC63431) with the first unit, however, we waited for over two hours for the second unit. Some miscommunication occurred and there apparently was no second unit from the same donor. So they were going to start to look for another platelet unit which could take possibly another several hours.

At that point, I needed to leave. I have never asked to leave early, reschedule or cancel an appointment. I have been very good about my appointments, arriving on time and most of the time arriving early. I missed a lot of my kids events over the summer and couldn't bear to miss this one. With that being said, I left and was able to take Andrew to take his driving licensure test at the DMV. He passed with flying colors! Andrew is on the Varsity basketball team at Cypress High and can now get himself back and forth to school, practices and games. This is a load off of my mind since I spend so much time at the City of Hope. Scott has been unable to drive Andrew to school because he has a Zero period and Andrew starts at first period.

So, the day wasn't a total loss. I evaded hospitalization for yet another day, got enough of a spike from the one unit of platelets (thank you!) and enjoyed taking Andrew to the DMV. Tomorrow morning, I'll pick up where I left off at the hospital. Watch out if you live in Cypress, Andrew is on the road. : ) love, nancy

Frustrating Platelets

2006-09-13T21:47:00.000-07:00

Well, I've come to the point of being frustrated with my platelet counts. I had a bloody nose twice last night at 12 midnight and 4 am. I had another one again today at the hospital which lasted over 2.5 hours. If I can't get my platelets over 10 with transfusions, then my doctor is going to admit me into the hospital again. I can't stand the thought of that right now!

Luckily, I dodged that bullet for today because of all your direct platelet donations. I hope to dodge it tomorrow, too. The first platelet unit I received today #LC63187 was an HLA matched unit and brought me from 7 to 16. The second unit was a non matched unit #LC63192 and brought me from 16 to 17. Thank you for all your great donations. Even Monday, I received a matched platelet unit from my mother in law! Thanks Mom. That was awesome of you.

When I checked into the lab today, they took a whole lot of blood samples from me (over 10 viles.) I know my doctor is working hard to figure out what the problem is with my platelets. I hope they find out real soon because this has gone on for a whole month. Now that I'm symptomatic, they are worried about me.

That's it for now. Thank you all for your well wishes. love you all, nancy

Double Bubble Wrap Me!

2006-09-11T22:09:00.000-07:00

Hi gang! Mark took me in today again (left at 6:30 am and didn't return until 4:00 pm) and my platelets started at 5 and with one unit of platelets transfused it went to 13 (LC63144) then with the second unit, which was supposed to be an HLA Matched Platelet product, it went to 17 (LC63164). So they sent me home again with strict instructions on what to do in case of bleeding, bruising, or headaches. I also received a unit of red blood cells #LC63135 which I believe to be Judy James' unit. Thank you all for giving your precious products and for taking so much time to go to the City of Hope to donate! I know your time is valuable and I know that it is quite a drive to Duarte! Thank you, Thank you, Thank you!

My friend, Tami, sent me something that was appropriate for my need for a full-body bubble wrap. Turn on the sound. www.saab-stuff.com/pop.swf

I know a lot of you have, or are, returning to school soon. Much luck to all those in junior and senior high school. Good luck to all those embarking on their first year in college. Good luck to all those continuing with their college education. It's a very important time in your life... enjoy it and learn well as this is a stepping stone to your future. I love you all! nancy

Bubble Wrap Me!

2006-09-09T17:24:00.000-07:00

Mark took me in today again to the City of Hope. We left at 9:30 am and didn't get home until 4:30 pm. The good news is that my white count is hovering at the low normal level by itself (not being pushed with neupogen.) My platelet count was under 5 (normal 150 - 350) again today so they transfused me with a unit of platelets. The first unit only brought me to 9 so they chased it with another unit of platelets (both LC63112) which brought it to a whopping 10 (obviously still an extremely critical level.) They said to return if any signs of bleeding or bruising occur or if I get a bad headache, go immediately to the closest ER. Isn't this comforting?

So, we decided that I need to be bubble wrapped until my appointment on Monday morning. Course, I'll go in, if need be, between now and then. Mark said he'd buy me some protective football gear, too.

Thank you for your precious donations of platelets. I'm sorry I'm killing them off so quickly.... I know, that's very rude of me. I don't know how to change all that. My doctors need to figure out how to control my platelet count. I know they will, but in the meantime, I have to be very careful! love you all, nancy

A Tough Week

2006-09-08T16:15:00.000-07:00

This has been a really rough week. I spent Tuesday from 8 am - 6 pm, Wednesday from 11am - 7:30 pm and Thursday from 8 am - 4 pm at the City of Hope. These days were so long... they should just put me on payroll already! My main problem is my platelets... still. Each day I received either one or two units of platelets and the next day my platelets were down to 5 (000) or less (normal 150-350.) These are extremely critical levels and I'm to watch for bleeding from my gums, nose, eyes, ears or anywhere else. Also, I'm suppose to watch for new bruises. Any signs of bleeding, I'm to rush back to the City of Hope.

They are now HLA matching platelets for me in hopes that I'll get a good boost from the transfusions and hopefully, hold onto a higher platelet count. So far, I did get a little boost but still can't hold onto the platelet count. They also transfused me via four hour IV on Wednesday and Thursday with Gammagard. This is a human blood product that contains immunoglobulins (or antibodies) to protect against infectious agents that cause various diseases. The antibodies fight infections. If a virus is responsible for the low platelet count, this should help. They need to figure out this platelet problem fast as it is very dangerous for me to be walking around with virtually no platelets. Regarding the antibodies... when I received the high dose chemo just prior to my bone marrow transplant, all of my immune system was wiped out. Because of this, when I am one year post-transplant, they have to test my immune system and possibly give me all my childhood vaccinations again. These will include Mumps, measles, rubella, small pox, and the like. I'm like a baby again... waaahhhhh

Some of you have received phone calls from the City of Hope Donor Center. Some of you are good HLA platelets matches for me so thank you for your continued donations. I've received the following units in the past week LC62784, LC62472, LC63052 and LC63040. I've also received two units of red blood cells. Sorry, I've been a little bad about keeping up with the unit numbers. I'll try and do better.

So, that is what's happening with me at this point in time. I'm sure they'll figure out the problem and then I'll be back on the mend. But, in the meantime, I have to take it easy and try not to hurt myself (I'm usually not too clumsly, but the more I try and be careful, the more I run into things.... go figure.)

The boys finally started school yesterday! Yeah... Scott is entering his last year in high school and Andrew is a junior. Where have the years gone?

Thank you for keeping up with my blog. I hope to blog with better news in the next few days. Thanks for your continued love and support! love, nancy

Not Much Change

2006-09-02T17:03:00.000-07:00

Yesterday, Mom and I spent the entire day at the City of Hope. My platelets were down to 6 (000) again. I received one unit of Scott's platelets. His platelets are HLA matched to mine. Since I've had such great difficulty holding a platelet count they requested that Scott come in last week in order for his platelets to be ready yesterday. I hope that his platelets will do the trick. I didn't get a huge boost from them but they may last longer. We'll see. I was also in desperate need of packed red cells. I received unit LC62357 yesterday and definitely feel much better today. Thank you for your continued blood and platelet donations.

I ran into my friend Christine Pachera yesterday at the City of Hope. She also has gone through a bone marrow transplant and seems to be doing quite well. If you are interested in viewing her website, please go to savechristine.com

Mark and the boys are taking advantage of the last weekend off of school. They headed up to Mammoth for the weekend. I hope they are having fun, catching a lot of fish, and getting in some golf. I think that was the plan. My mom is here staying with me again.

Thank you again for all your support. I'll keep blogging so you won't get worried! : ) love, nancy

A Little Improvement : )

2006-08-29T23:04:00.000-07:00

Beginning last night, I got to start drinking some wonderful barium solution in preparation for a CT scan today. I had to chill it, put an umbrella in it, and pretend it was some type of tropical drink in order to choke it down. This continued three, two, and one hour prior to my procedure. I guess the test went okay, I'll find out more next week.

The good news is that my blood counts actually held pretty steady from two days ago. Over the past few weeks, I've been requiring platelets and a two hour infusion of magnesium at my appointments at least every other day. The need for magnesium is in spite of the fact that, I'm already taking 12 magnesium pills per day. I've also required packed red cells at least once or twice per week. Today, I didn't require the magnesium or the packed red cells. My platelets were at 18 before they transfused me with one directed unit (LC62589). This past Sunday, I also received a directed unit of platelets (LC62524). I'm hoping that I can get my appointments back to twice per week instead of every other day. I would like to thank you all for continuing to donate platelets (A+ or O+) and whole blood (A+). The City of Hope is in a blood shortage situation so do know that anything that I'm unable to use will be given to someone else in need.

Thank you for your continued thoughts and prayers. I feel very lucky to be surrounded by such caring, wonderful, and supportive people. You must know that you've all contributed greatly to my recovery. Thank you again... with love, nancy

Still Home, Don't Worry

2006-08-26T15:10:00.000-07:00

I'm sorry that I haven't blogged in a few days. I'm still home but require appointments every other day due to my low platelet problem. I'm still needing platelets at every appointment. Yesterday, my platelet count was at 6(000) - normal 150-450. This is the lowest my platelet count has ever gone. We shouldn't be making new records on the low side at this point... should be posting record highs. I think I'm 93 days post-transplant and was hoping by now to have great blood counts. The unit of platelets I received yesterday was from direct donor #LC62472 - Thank you.

The good news is that my last marrow biopsy showed no signs of the disease, MDS. I'm showing about 90% engraftment but it appears that I didn't get enough stem cells from the donor. We're still waiting it out, the new marrow just needs to become more robust. I'm trying to figure out what would "wake up" the new stem cells from Japan... (can't eat sushi for one year, don't like Natto - probably best to stay away from it anyway because it is fermented, how much tofu can one person eat?) California Roll sounds kind of good (is it even Japanese?) but I'm too lazy to make my own and I can't eat the store bought kind just yet. I should visit the nearby Japanese market for ideas. Maybe I'll pick up some Mochi (love it with Kinako/sugar.)

I'm just glad to be home. I never appreciated home so much! I want to thank you all for your continued support. The emails, phone calls, wonderful dinners, cards, and continued support through blood/platelet donations have been very uplifting. It may take a while for me to be able to bounce off the walls like before but I will get there. My mind wants to do it all at this point, but my body and doctors say "wait a little longer." So, I do what I can and count on others to pick up the slack. Love you all. Nancy

Happy To Be Home!

2006-08-22T21:15:00.000-07:00

I finally came home from the hospital (stay #3) yesterday afternoon. Unfortunately, I spiked a fever of 101.3 again last night but couldn't bring myself to make that U-Turn back to the hospital. Mark offered to take me back, but I told him if I still had a fever in the morning, I'd have Scott, Mom, or Kurt take me since he had to work all day. Luckily, my fever hasn't gone beyond 99.3 all day.

During this past hospital stay, I needed platelet tranfusions five days in a row. For some reason, I can't keep any kind of platelet count. My doctor did another bone marrow biopsy on me yesterday before I left the hospital and has ordered a series of tests to find out if there could be another reason for my excessive need for platelets. I think during this stay all of the IV antibiotics they had me on, suppressed the marrow and caused my spleen to capture all my platelets. That's a very uneducated guess...

Anyways, thanks for keeping up with my blog. Some people think since I'm home, all is well. But, I think we all know better now. I still have a fragile immune system and the doctors are a little concerned about my low blood counts. (Course, it didn't help that I ran into things twice today, causing bruising on my legs.... oops)
I know I have to be extra careful.... love you all, nancy

A Room With A View

2006-08-18T21:33:00.000-07:00

Nancy says to be careful what you wish for. She previously said a City of Hope hospital room with a view of the mountains would have been nice. Well - she had a slight fever last evening (Thursday). Mark took her in and they decided to admit her. Nancy is bummed! Her doctors are running a few tests and she will likely stay over the weekend. By the way, she is still receiving red cells and platelets, so if you would like to donate, please contact the Donor Center. Remember, if she doesn't get your blood products, someone else in need will! Thanks for the continued thoughts and prayers, cards and letters, etc, etc.

Low Counts Today

2006-08-17T16:26:00.001-07:00

Mom took me to my appointments today. We were there from 9 am to 3 pm. My white count was down again to 1.0 so my doctor gave me a shot of Neupogen in the stomach to try to boost it. (Oh, that was fun.) I also needed IV's of platelets (count down to 13,000), packed red cells and magnesium. I got the works today.

My doctor doesn't like that my counts are still so low. He said the easy fix would be to get stem cells from the donor. But, we can't do that since she is from Japan. In Japan, they only harvest marrow (no stem cells) and they do have a one time donation policy. Meaning, each donor can only give marrow once in their life. So, next week I have an ultrasound scheduled to see if my spleen is enlarged. I also will have a bone marrow biopsy. If my marrow looks good and if it appears that my spleen is capturing platelets, I may have to have my spleen removed. If not, we just have to wait it out. Hopefully my counts will rise on their own.

I finally sorted through some of my paperwork from the hospital. Andrew counted my direct donated units of blood/platelets. I received over 150 transfusions since my marrow transplant in May. All but a few of the units were direct donations from all of you. So thank you very much again for your precious elixir. I'm still needing transfusions of platelets about once or twice per week and red blood cells about once per week.

The main thing for me at this time is to stick to that low bacteria diet and be extra careful so I won't get sick. The last thing I want is to end up in the hospital. I've been home for two weeks now and am really enjoying it. Love, Nancy

Getting Stronger

2006-08-14T16:29:00.000-07:00

I'm sorry I haven't blogged for a while. I'm still very much enjoying being at home. The first thing that struck me when I got home was the size of my TV. I was used to watching TV on a maybe 15" screen in the hospital for almost 70 days and on a 17 - 19" TV at the village which was mounted very high on the wall. The picture looked enormous at home. It was almost shocking! The reason why this is important to me is because in the hospital many people brought DVD's of the boys basketball games. My eyes are very bad still from the chemo so I had a difficult time identifying who was who on the screen. I can see every player on my TV at home.

This weekend was a little tough as Mark and the boys went to Las Vegas. The boys were in the Hollywood Dodgers Basketball Tournament. They had a blast and did well in the tournament. Scott's team took championship with game 2 going into overtime and winning game 3 by only two points. Andrew was on the opposing team for game 3. He thought he got the last shot off from past half court and made the basket to find out that his shot was one second too late! Exciting stuff.... wish I could have been there. But, as luck would have it (actually good planning), several people taped the game for me. I can't wait to watch the tapes. Thank you for being great videographers. Mom stayed with me during their absence.

On Saturday, I needed both blood products. I received a unit of platelets (LC61729) and a unit of packed red cells (not from a designated donor). I also received 2 grams of Magnesium. Thank you for your continued platelet and blood donations. Today, I received 4 grams of Magnesium but was not in need of any blood products just yet. My doctor's hoping that my new stem cells are making some red cells and platelets. I probably could have used another platelet transfusion today but he wants to see what I'll do on my own. (For those who follow my counts, my platelet count was at 23,000, normal is 150,000 - 350,000) My next appointment isn't until Thursday so it's quite a few days away. He said to call if I start bleeding from my gums or eyeballs (well, I added the eyeball part) and he'll have me come in for transfusions.

I'm still feeling really good. I feel fortunate that I've been home for 10 days now. I'm being real careful about wearing my mask when I need to and washing my hands frequently. I'm also being very good about the low bacteria diet and care for my hickman catheter. I'm trying not to get sick. My white count is so low today (1.4, normal 4.0 - 11) so I have to be extra careful. I'm hoping it'll go up at my next appointment.

I feel like I'm not as weak as when I first arrived home. Just moving around my house gives me exercise compared to my small hospital room or even the Village room. I can go up and down the stairs with ease carrying laundry or whatever. I like to take little walks around the block (mom won't let me when she's here) after the sun goes down. At any rate, yes, I can feel myself getting a little stronger everyday. I even gained three pounds since I got home (do you think the 1/2 gallon of chocolate chip ice cream every three days has anything to do with my weight gain????) I'm hoping some of the three pounds is muscle weight... wishful thinking.

Okay, that's it for now. Thank you so much for continuing to follow my blog. I appreciate all of your love and support. With love, nancy

Enjoying the Family

2006-08-07T17:46:00.000-07:00

I'm enjoying being at home. The novelty hasn't worn off yet. The hospital almost seems like a distant memory. The boys have been so good about helping out around the house. I'm not allowed to sort dirty laundry so Andrew continues to be the laundry man. Scott has been good about the dishes and Mark has been cooking me my low bacteria meals. I get fatigued real easily so they let me sleep when I'm tired.

Mark took me to my appointment today. We were at the City of Hope from 9:15 am until 2:15 pm. We start with labwork and have to wait for the blood counts to be processed. Then we saw my doctor who ordered a two hour infusion of magnesium. The anti-rejection drugs that I'm on really bring down the magnesium level in my body. I'm also taking heavy doses of magnesium orally.

Speaking of oral medications. I'm taking something like 27 pills per day. This is quite a task which requires that I keep a journal. Some medicatons can't be taken within two hours of other medications. The medications are taken one to three times per day. Without good record-keeping, I would be lost.

Thank you all for your continued well wishes. I appreciate all of your love and support. love, nancy

THERE'S NO PLACE LIKE HOME

2006-08-04T20:14:00.000-07:00

I finally made it home! Oh, it feels so good to be home with my family. There really is no place like home.

Mark and the boys did a great job getting the house ready for me. They've removed all the plants from the house and put them in the backyard, they purchased new air purifiers, put hepa filters on all the intakes in the house, cleaned the house, did all the laundry, and stocked the house with low bacteria foods for me. I can't have any live plants or flowers in the house due to the possibility of mold, mildew or fungus which can grow in the soil or water. Since my immune system is still very fragile, I can't risk any type of infection.

I need to be on the low bacteria diet for at least another month. Among other things, this means I cannot eat any food prepared at a restaurant, my food needs to be cooked here under specific guidelines. I cannot have bakery items that have sat on a shelf, all my meats have to be well-done and I can't have most fresh vegetables or fruits. The hospital even provided guidelines as to how to do the dishes and appropriately dry them.

So, even with all these rules, I am so so happy to be home. The boys and some friends made me some great welcome home signs. I'm just enjoying being around my family tonight. Seems like I have a lot to catch up on, but at the same time, I don't see how I was gone for 82 days! I think time stood still for part of the time and the rest of the time I spent fighting and recovering. What an ordeal. I'm not out of the woods yet, but getting stronger every day. I still need to visit the hospital three days a week for check-ups and possible transfusions of red cells and/or platelets. My appointments are Saturdays, Mondays, and Thursdays starting tomorrow through the end of August. August.... why is it August? I left on May 14th!!

I want to thank all of you who have traveled this journey to this point with me. It's like I was telling my uncle, you have all served as my inspiration. It has been tough but I don't really think about it... I look at the so many small improvements that I see in my health every day. I know they are small, but they are significant. Yes, I've had setbacks, but I always knew I can overcome them. And yes, there will probably be more setbacks, but I can overcome them as well. I've never been a very patient person, but have learned that healing takes time. To me, this is an investment in my future.. a future which will hold precious years with my friends and family, fun with my golf and gambling buddies, fantastic times at family reunions, etc. I look so forward to so many things and know that with everyday I'm a step closer to the things I love. I thank you all for your support which has been shown in so many ways. I'm happy, I'm home and I love you all. Nancy

Good Day

2006-08-02T17:58:00.000-07:00

I didn't need a blood or platelet transfusion today (had both yesterday,) so the visit to the clinic was under three hours long. Yeah!

Mom and I had a relaxing afternoon. I guess no news is good news. I'll sign out for now. love and miss you all, nancy

Another Day in the Village

2006-08-01T19:58:00.000-07:00

I received a unit of platelets today (LC61426). Thank you for continuing to donate your precious platelets. I'm still needing platelets atleast two or three times a week.

Yesterday, Mark and I went for a walk on the grounds again. We finally visited the Japanese Garden. It's quite serene and beautiful. They even have food that you can feed to the Koi and turtles. I've been visiting the City of Hope for four years now and never visited this garden. Today, we took a little longer walk around the grounds. It felt good to get out and stretch my legs.

We had another changing of the guards today. Mom came back this afternoon to relieve Mark. I hope to be out of here soon. There is light at the end of the tunnel.

love you all and miss you lots! love, nancy

Things Are Good

2006-07-31T18:58:00.000-07:00

Things are pretty much status quo. Mark and I spent hours in the clinic today. My doctor finally came back from vacation today and got the update. I was in the hospital the whole time he was in Japan. I told him not to ever go on vacation again!

My counts are okay. It's just a waiting game. When I no longer need daily appointments then I'll be able to go home. I'm hoping this is sooner than later!

Love and Miss you all. Nance

Changing Of The Guards

2006-07-30T20:10:00.000-07:00

Mom finally got to go home today. Mark is my caretaker for the next several days. He's doing a good job. He cooked me Udon for lunch and Filet Mignon, garlic spinach and rice for dinner. yummm... He also took me for a walk on the grounds here at the City of Hope. The rose garden is quite beautiful and relaxing. I can't have any exposure to the sun because it causes more GVHD (Graft vs. Host Disease - rejection.) So, when I venture outside I really have to cover up.

I'm feeling pretty well right now. We went to the clinic today where I received the "usual" - antifungal and magnesium via IV. I may need blood/platelet transfusions tomorrow in additional to the "usual", we'll see.

I don't know how I'll ever thank you all for your support. The Cypress High School Basketball team continues to bring dinners to my bachelors. The OCO group also has brought numerous meals for them. So many of you have donated platelets/blood to sustain me and some were donors whom I've never met. They donated based on my friends/family having them come forward. Many of you have taken care of my boys by driving them places, feeding them (feeding Andrew is no small task), and letting them hang out with you. I have received hundreds of get well cards, some from people I don't even know. I've received cards from bible study groups and women's groups. I thank all of you for your well wishes. Everyday, I feel I am getting stronger. I know that I'm better because of your prayers and continued support. So, thank you from the bottom of my heart to all those who have done so much to help in my recovery. Love you all. I'll be home soon.. love, nancy

Uneventful Day

2006-07-29T18:44:00.000-07:00

Today, Mom and I spent five hours in the clinic getting my IV antifungals and magnesium. Apparently, I need so much magnesium because the anti-rejection drugs deplete it from my system. We're slowly getting the number of hours in clinic down. Mom will finally get a break as Mark will take over for a few days starting tomorrow morning.

That's it for now. I thank you all again for your prayers and support. love, nancy

Long Day In The Clinic

2006-07-28T18:37:00.001-07:00

Nothing much new to report. I received a unit of platelets today from my brother, Warren. Mom and I were in the clinic for almost eight hours today. Besides my transfusion of platelets, I received magnesium by I V and also an IV drip of an antifungal medication. (sounds gross, huh?) That was given for preventative measures. Then we waited for the doctor to show up.

I got to see Lynny today. She visited us at the Village after her appointment at the donor center. Thank you for being so supportive Lynny. You Rock Baby!

Tomorrow will be more of the same. I hope to not spend quite so much time in the clinic tomorrow. That's it for now. Love, nancy

Back In The Village

2006-07-26T18:09:00.000-07:00

Well, I made it out of the hospital again. Hopefully, for more than four days! We are still in the same Village unit as before and find it's fairly comfortable. The kitchen is not too well equipped, but we bring in whatever we need.

I received a unit of platelets before leaving the hospital today (LC61023). Thank you for your continued support. I will continue daily appointments at the City of Hope. When my counts get better and I no longer need to be seen daily, then I'll get to go home! Several things need to happen in order for me to be released to my home. I'm confident that these things will happen in time.

For the time being, it's nice to be at the Village. I no longer am toting my IV tree and that in itself is liberating. It's the small things that bring about joy.

Thank you all for continuing to follow my progress by reading my blog. Love and miss you all. Nancy

May Go To The Village Tomorrow

2006-07-25T18:13:00.000-07:00

Today I received a unit of platelets (LC61023) and a unit of packed red cells (LC61065). Thank you once again for your precious blood/platelet donations.

Seems my symptoms have stabilized. I think I'm going to venture out to the Village tomorrow. It's kind of scary because here I feel safe with all the nurses and doctors around all day long. I don't want to land back in this hospital, but if I have to then there is no choice.

Thanks to all of you for your support. I hope to be home sometime soon.
love, nancy

60 Days Post-Transplant

2006-07-24T20:10:00.000-07:00

Nothing much new to report today. Last Saturday I received a unit of platelets from Scott. To date, I haven't needed another platelet transfusion. The HLA typed platelets seem to last longer, but as my doctor said today, we should save his for when I really need it. He doesn't want me to build up immunity to Scott's platelets. Although, I do not fully understand how all this works, I really appreciate all of you who have donated platelets to me. Warren was here this weekend and donated platelets today without incident. I will still use your precious units and want to thank you for your continued support.

The doctor turned off the ocntinuous morphine this morning, but I can still push the button if I need a boost of painkiller. Even though they have cranked down the continuous morphine to the lowest level before turning it off, I think I got a little headache today from the withdrawal. If I can stay off the morphine pump and can control the pain using other medications, maybe I can be released to the Village soon.

I've been at the City of Hope (hospital and Village) for a total of 71 days now, but who's counting. I'm 60 days post-transplant now. My blood counts are slowly improving. As my doctors indicated, the counts will bounce around for a while before they stablize. The platelets are the last thing to respond to the transplant. I'm confident that my counts will be normal at some time, I just have to be patient.

Thank you all for your love, prayers and support. love, nancy

It's Just A Matter of Time

2006-07-23T15:37:00.000-07:00

Well, I'm still in the hospital. I feel so much better now. They gave me a new drug to help with my pain and I feel like a new person. It'll be just a matter of time before I'm well enough to be discharged. I'm still on a high dose of steroids to help with the GVHD (rejection) so my appetite is a bit out of control. I'm even eating the hospital food. Yikes!

I hear it has been terribly hot outside! I can't tell from inside my hospital room. It's always a constant 75 degrees in here.

I had a lot of potential blood/platelet donors show up yesterday (Saturday) who were unable to donate. If you have given platelets in the recent past, they need a doctor to sign off that you are eligible to donate again. On Saturdays, there is no doctor available to approve another donation. So, please ask when you make your appointments if you are eligible to give based on your donation history. If you are not eligible, do not make your appointments on Saturdays. There is a doctor in house Monday through Friday who'll approve additional blood/platelet donations.

Thank you for your support. I miss you all. love, nancy

Another Day

2006-07-21T20:28:00.000-07:00

Nothing much new to blog today. I've been in this hospital room now for 13 days. Originally, I thought it would only be a couple of days stay. I'm not going to be discharged this time until I feel well. My total time at City of Hope is now something like 67 days. Whew...

I want to continue to thank alll of you for your donation of blood products and also for helping my family at home. Many meals have been delivered. What a blessing this has been. Also, special thanks to my neighbors Frank and Joyce for taking on the challenge of teaching Andrew to drive. I really appreciate this effort and feel confident that he'll learn to drive well. Andrew has had his driver's permit since mid January and these behind the wheel hours will help in attaining his 50 hours on the road.

Thank you all again for your support. love, nancy

Loopy Day

2006-07-19T18:24:00.000-07:00

I received platelets this morning. (LC60635) Thank you for your continuous gift of life!

Today, I had a rather rough day. I have the ability to up the morphine by the push of a button, when feel I need it, but today I may have overdone it. Between the Benedryl and morphine, I went very loopy this afternoon (yes, more so than usual).

My doctor's are trying to get a handle on the GVH - Skin, by way of steroids. I never used so much steroids before in my life. I wonder if this is playing a role in my loopiness today.

That's it for now. Still in hospital until I feel better! love nance