Thursday, September 25, 2008

Facebook Update #2 from Tuesday Sept.23

Today begins a long journey, but I don't travel alone! So I hope you don't mind sometimes lengthy updates, sometimes very short. This one will be longer b/c there's so much new information.

How to contact me:
Via snail mail: My addy is 5069 Oleander Place, Santa Barbara, CA 93111 -- my family will deliver my mail to me.

Via phone: 805-722-5556 is my cell phone I'll call you back if you have to leave a message.

Of course, I'm on Facebook so you can catch me here too - most fun!

Ok, so here's what happened today. My hotel is awesome - I'm on the top floor with great views of Santa Barbara harbor and the mountains behind us! You would love this place, room service for breakfast, lunch and dinner!

Some good news: My blood counts stayed stable since last week - no dives. My spleen was not enlarged. And when they look at my bone marrow and see how many healthy cells there are vs. leukemic cells they found that I had 50% leukemic cells. Usually they see 90-100% leukemic cells once people get diagnosed. That was me LAST time! I am sure that, because I was so healthy over the last year since starting my Shaklee supplements that I knew what sick felt like and was able to catch it right away. Whereas last time I had this I was very unhealthy and couldn't tell I was that sick until it was almost too late. Also, when I was getting an echoardiogram (ultrasound of the heart), the technician said "My goodness, what perfect anatomy! (speaking of my heart!) - he said, "It allows me to get great images which I usually can only get in small children and young teen girls who are very thin." I thought that was pretty cool, like I've been restored from the inside out, friends!

Bad news: Yes, chocolate ice cream still melts when you put it next to a hot plate on a tray for a while. Hey that's all!

More info for those who want all the nitty gritty:

The doctor came in and gave me some lowdown. I'm in process to find a perfect match - key here, perfect! Please pray that I'll find that PERFECT match so I don't get Host-vs.-Graft Disease, a complication where the stem cells that come from a donor turn on your own tissues which can affect any part of your body. Oh, update-- they don't call it bone marrow transplant anymore - it's stem cell transplant.

The stem cell transplant is interesting - like a transfusion, not a surgery. It's replacing my immune cells with a donor's. The donor's cells act like a weapon to destroy any remaining leukemic cells if there are any or if any return.

The hard part: Getting through the first round without infection. Pray. Then, more chemo and then radiation trying to eliminate all cells in my body so I can accept the new and improved immune system (a donor's stem cells) -- the infection potential is the dangerous part - PRAY.

The great part: Everyone in the know seems delighted when they hear I'm having a stem cell transplant b/c it is SO successful - we're talking permanent CURE for leukemia and lupus. And now that I've tasted how HEALTHY feels for over the past year, I can't wait for what the Lord has in store for me after all this!

Tomorrow: Platelets transfusion, surgery to put in the Double Lumen Groshon (sounds like an olympic sport - hope I get a 10), then we begin chemo with Ara-C.

Visitors: I love visitors but I can only have healthy ones -- not even a sniffle, cough, sore throat, achiness, run down feeling, or even maybe I'm fighting something, but don't have it yet. And if you've been around sick children then you have to wait to visit me. I know you understand! It's just b/c my neutrophils are 0 even right now due to the leukemia. When you come, bring your SMILES, but if you have to cry that's ok, I'll cry with you - it's what friends are for. Also, you might want to check with the nurse's station first if I haven't talked to you ahead of time. I don't mind drop-ins, but they'll tell you where to wash your hands and if you have to wear a mask. Now, all that said, don't be afraid to visit!

1. PRAY - for me not to get an infection during this month and to not have pain from surgery and side effects from chemo. That I'll get some answers on which of my supplements I can take and which I need to avoid right now. For my kids to feel peace and to grow in their faith in the Lord. For my husband's strength to juggle his new challenges with work and being a single parent, as well as for all of them to stay so healthy.

2. DONATE BLOOD - I'm A+ and you can donate blood without earmarking it for me - it's too complicated to earmark b/c I need it when I need it and there are so many of you...they can't store it up like frozen dinner. If you're local call United Blood Services - in the phone book to go in and donate.

3. DONATE PLATELETS - You don't need to be any blood type to donate platelets to me. First call United Blood Services in the phone book to make an appt. - they'll go over what it entails and ask them if you can get HLA typed too b/c I need HLA-typed platelets. My doctor is running tomorrow at 5:30 a.m. with the Director of United Blood Services so he's going to "lobby" for me and see how we can get HLA-typing done for you guys. I'll update you on that. Everyone is in desperate need of platelets though!

4. REGISTER TO BE A BONE MARROW DONOR - When you call about platelets you'll ask them about this too unless I have more info otherwise.

At the end of my updates (this one is the longest ever!) you'll see some #s - that's my blood count for the day.

Hemoglobin 11
White Blood Count 2.4
Hematocrit 31.4
Platelets 44k

So that's it -- I've been busy today so I'll just close asking you to read Psalm 41 and pray through it for me and trust the Lord is doing this in me!

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