Saturday, May 31, 2008

Six Months Already?

As of the 27th of May I have been taking chemo for six months.

It was an eventful day here in Houston as I celebrated with a press conference with the mayor. Ok, it wasn't a press conference for my six months of chemo, but there was a press conference! I stood with the mayor as he announced a detailed plan to continue the fight against benzene, a known cancer causing agent that is pumped into the air around Houston by industry and autos. I was 'exhibit A: the leukemia person who grew up on the east end'. None of the press had questions for me, but it was good to stand with people who believe in fighting benzene. Kudos to all those warriors who stand up for what they believe will make the world a better place.

In other news... the side effects of my chemo have been kicking me around during the past two weeks. LOTS of nausea and a sort of dizziness have kept me out of the game for the most part. I feel very unproductive and a bit freaked out by how far I can get behind in a such a short period of time! THe doctors have added several new medicines to help, but each one brings its own set of side effects too. I am confused at times how to take all the meds and which ones can't be mixed with other ones, blah blah blah. Add all this to a sinus infection and wow... I feel mega crappy.

Nevertheless, with some bursts of energy here and there Lili and I did plant some basil and tomatos in the back yard. It's been nice to see our plants growing and blooming. Next blog I will try to post some of our favorite blossoms!

Lili finished up school so the official start of summer has arrived. I am happy to be free from the drop off and pick up patrol for a few months! Lili will be starting driver's education very soon, and she is doing well backing the car out of our skinny driveway.

Last week I spent most of the week at the hospital with doctor appointments and another bone marrow extraction. There were huge mixups with the meds and the whole day got turned upside down, but I did finally get through the maze at MDAnderson and got everything done for the moment. Test results will be back in a few weeks (we are accepting bets now for when the results will actually arrive).

Warning: It's not uncommon for the test results to 'bounce' meaning I may have 'worse' results this next go around. I keep telling myself that it's normal to 'bounce' so don't freak out. When I was feeling good, I did worry less. As I am a mess of side effects at the moment: swollen, headaches, snotfilled, rashy, feverish, with nausea... I tend to worry more.

I'm sure that the raw vegan way of eating is best for fighting cancer. However, the more tired and sick I get, the less likely I am to eat raw vegan. How wierd huh? It takes more time and effort to juice and eat right, so when I feel bad, I have all the stuff I don't normally eat. It tastes good, but I don't think it's helping my immune system stay strong (evidence: the sinus infection and swelling).

So today Lili and I are once again trying to get back on track and 'go raw'!

Thanks again to all those who sent great cards, comments, emails and phone messages! I enjoy them so much! Many thanks to my family and Peggy, Gracie, Melody, and friends for coming over for birthday fun last weekend. I loved seeing each of you, and the sweet potatos from the grill were fab!

The past month a friend died from metasticized cancer, however there are success stories from some friends this month too. My friend Della, from Florida, came through her heart surgery with flying colors. She is a bright silly star and Lili and I have enjoyed her staying with us and sharing her tenderheart, sense of humor, and of course her amazing love for our darling Daisy dog. Della also inspired us to get henna tattoos at our friend Betty, Douja, and Norma's party!

Please do keep in touch, and I hope to see each of you very soon. You are welcome anytime, just call to see which side effect is in residence at the moment. You may not enjoy watching me sleep!

Tomorrow Lili and I will celebrate 3 years since her arrival. It seems like just yesterday and then it also is hard to remember life before Lili. We hope to celebrate by doing some of the things we did on her first day (go to Target and then go get a hamburger)! Let us know if you want to join in on the fun!

Wishing "all ya'll" hugs and kisses, health and adventure,

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.

Rhonda, Lili and Daisy