Thursday, May 1, 2008

Adventures, Celebrations and Test Results

It's been a month or more since I have written. Seems as things get back to a new 'normal' I have less time, but more to report. My goal is to blog more and dust less! So when you come to visit know that the dust in my house is because I love you and want to communicate more.

Here are some highlights of the past four(ish) weeks:

1) Finally got the results to the cytogenics testing THIS week and I am 0 out of 20. This means I have reached the cytogenic response (it's a good thing).

2) Blood tests done this week are PERFECT, meaning normal stuff like iron, white blood cells, platelets, etc. I am NOT anemic or anything. The physician's assistant asked me 'Why are you here?' I replied, "I'm in a trial for a leukemia drug and I have to come in every couple of weeks?" She said that they rarely see someone with such great blood tests so it was hard to tell! Yeah!

3) Side effects are cycling through every so often, but I am more familiar with how it feels and how long some of them last, so it's a tad less frightening. For instance the bone pain comes and goes, the headaches, the wierd feeling in my hands, the swelling, the puffy eyes, the wierd hormone flushes, etc. I doubt some of them will go away, but it is less. The main thing is that my blood levels are normal.

4) I went to two retreats. The first was with the Crazy Sexy Cancer Tips author Kris Carr. It was held in Austin and my fab fun folks at the Crazy Sexy Life forum helped raise money for me to attend. It was a lovely introduction to some great cancer survivors and a reconfirmation of my decision to pursue the raw vegan way of life. The second retreat was with MD Anderson and it was also a great way to meet folks living during a cancer adventure. LOTS of laughter and a few tears, but mostly aches from laughing so hard. Cancer patients have some crazy gallows humor, but it was all good.

5) We celebrated Lili's birthday and had a big fun party complete with fancy dress. I hope to post a couple of her fab photos. We took the photos at Peach & Connie's in Shepard. It was a lovely day and so the photos seem to capture the sunshine of our first trip in a LONG time.

6) Lili changed schools and LOVES her new public school. It's a wonderful place and it's so fun to see her excited to go to school each day. Her grades are up and things are moving along well.

7) I'm working more and still tired at night, but it's nice to be at the office more and working to accomplish more every day.

8) The Stem Cell transplant team found two potential donors for me. I am approved for a stem cell transplant if the chemo stops working for any reason. The only thing is I need to be healthy enough for the transplant and have a donor. I am getting healthier all the time, but the two potential donors are not viable (not a good enough match). SO... I am without a back up plan, and if the drug fails it usually happens within the first two years. I am only 5 months into treatment at this point, so it will be tense until I find a perfect match, or until I reach that two year line in the sand. Truthfully I am not sure I will really relax even after two years as it's always good to have a plan B!!!

9) Lili and I really really appreciate the phonecalls, cards, letters, checks, pictures, posters, poems, voicemails, etc. during our cancer adventure. I have used the resources to have acupuncture, massage, and wheatgrass! It's an exciting life! We really appreciate all the love, prayers and special packages that keep arriving. Thank you, thank you, thank you!

Hedy, please tell your 4th grade class that we LOVE LOVE LOVE the letters and artwork. And...YES, I am still funny to answer one of the kid's question. Jeff, thanks so much for the great letters from the Powerhouse Kids!!! Lili and I loved reading them and seeing their bright healthy smiles.

10) This week Lili and I are working with our local bone marrow donation organization to encourage folks to sign up to be a donor. I will send out another email with all the details so you can forward it if you want. We may be participating in local drives and be on tv. We will let you know how it all shakes out and if anything shows up on a tv near you.

Talk to you soon by email, phone, letter (thank you note), or our constant prayers of thanks for each of you.

Love,
Rhonda, Lili and Daisy

6 comments:

Anonymous said...

Rhonda,
Glad to hear your doing better, with better blood results. You really look great and Lillie is just beautiful.
You are always in our prayers.
We are in Bermuda at the moment and just got on line after being out of touch for a week.
We love you both,
Karon and Dave

scnewme said...

Hey girl, Haven't you had a very busy month!!! So glad to see the report on your numbers/bloodwork, keep doing what you're doing - its working! Sounds like Austin was everything and more, I'm green with envy! Beautiful pics - all of them! If we can't meet for now, this is the next best thing! Hope you're feeling well and not in too much pain. xo Sherry

Anonymous said...

Hi Rhonda,
so glad your results are so good. You and Lillie look amazing. I have written a couple of times but maybe I have the wrong email for you. I am
thinking of you often.
Much, much love to you and Lillie,
Tessa.

debbiedoesraw said...

Hey girl great to talk to you the other day.. I took your advice to heart and am relieved that I did.. more later on that sitch.
So wonderful that your blood is awesome enough for them to question you.. what a great thing that is!
talk to you soon,
I love Daisy!
deb

Misha said...

Rhonda,

You and Lilly look GREAT!!!!

So happy things are getting better for you.

I know how difficult this is for you and am so proud that you are hanging tough!!!!

I pray and think of you often.

Be well and talk to you soon,
Michele

Misha said...
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