Words, words and more words. I've got words coming out of my ears. Words from Mothers, words from books, words from medical journal, words from new stories. I've got so many words of others in my head, that I cannot sort them out to find MY words.
I read one of my essays for Spokane's first annual Listen To Your Mother Show, this past Sunday. On Mother's Day. It's taken me a while to decompress. There were 12 of us that read essays (our WORDS) on Motherhood. It was amazing. Flawless. I really hope it was as well accepted as I witnessed it. I am incredibly proud of my contribution. I know this sounds incredibly egotistical, but the piece I read came off exactly as I wanted it to. It was powerful. I rocked it. I was going to share the text of the essay, but I'm not going to do that until the video is available. If you get a chance to read the text first, it will lessen the impact of the spoken words. So.... you'll just have to wait. Yes, I did speak about Childhood Cancer. That much I'll tell you.
As I am processing this experience I am starting to tap into my "Me". The parts of me that have been dormant for the last 2+ years. I've been resisting it. I think this gorgeous weather is helping. I also think I am ready. I've been walking a tight rope between the childhood cancer world and the outside world. I won't say that I am finding a balance between the two. I'm just finding that I can be me. My authentic me. Which now looks different than it did prior to February of 2009. I already did the blooming thing, quite a few years ago. I followed my favorite Anais Nin quote and bloomed.
"And the day came when the risk to remain in the bud was more painful than the risk it took to bloom." - Anais Nin
The fact that I have to bloom AGAIN was getting me down. The idea that I was the same flower was getting me down. Then it struck me. I am NOT the same flower and I CAN bloom again. Yesterday I was a sweet Daisy, today I am a hearty Sunflower. With a thick bristly stalk, great green leaves and a big bright face that produces nourishing fruit. A flower that comes back year after year after year and blooms where ever it's planted.
Part of this catharsis was also getting together with seven other local Momcologists. Several hours of leisure time and great food. I looked around the table at these women and felt such a deep love and connection. We had eight women. Between us we have 11 Cancer Kiddos. Four of those kids no longer walk this green planet. One of these women adopted a small child with the same cancer that killed her daughter. One of these women have two daughters diagnosed with ALL. One of these women lost two of her kids to cancer. Somehow we have found one another, connected in a way that cannot be explained. I cannot wait to do this again. There is much to be shared, learned, witnessed and received from these women. I love them.
Gregory has had so many changes in the last several weeks. He has remained OUT of the hospital since February 25. I have had a raging chest/sinus cold and he barely has a whiff of it. We are still tapering his prednisone and we are down to 2mg, every other day. He has small symptoms, but nothing that needs to be treated. His IgG was low at his April visit, so he did receive IVIgG the last week of April. I had forgotten that his GVH likes to attack his marrow production. I also forgot that steroids artificially increase the white blood count. His last WBC was a measly 1.9 with an ANC of 1,670. His platelets remain really strong. His Hematocrit still is below normal. 32 at this last visit. "Normal" range is 34-40. Yet, from what I could tell, his labs did not reflect that his marrow was working overdrive to bring those numbers up. These are acceptable numbers. Just lower than I would like to see him. Only time will tell what is to come.
I bit the bullet and asked for a Pulmonary Function Test (PFT) At his last visit his oxygen saturation was 92. While it's not decreasing with the pred taper, it's not getting better, either. His High Resolution CT's are still showing no signs of GVH (Last one was in December. He'll have another in June for his 2 year follow-up in Seattle.) I'm not sure if there is anything that can be done, either way, but I feel the need to be proactive. If there is something going on and we can avoid further deterioration, thus avoiding the need of oxygen, THAT is what I am looking for. In the world of GVH, being reactionary is NOT a plan of action.
He has also finally lost his lower two front teeth. MAN! His adult teeth have been coming in behind them and he was just too nervous to loose them. Which means that he does not have the infamous toothless grin. *shrug* His memory book has pictures with hairloss, hickmans, G Tubes, Ng Tubes and gigantic IV poles. I think we can live without a toothless grin picture. He also had his first "little boy" haircut since April of 2009. I just have not been able to let anyone cut it short. I have enjoyed the soft, wavy length of it. It had to be done, though. With the added warmth of the weather, it was time for it to go, for his comfort. His eyes and skin are so sensitive that he MUST wear a sun hat at all times. He's been playing outside, post haircut, and is sweating. Yes, it was a good idea to cut it. Although I prefer the long locks. It's only hair, but for some reason it is an emotionally laden part of our existence.
As always, I send you love.
Until another time....
*I need your help. Won't you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research.
Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, Children's Cancer Hospital at MD Anderson Cancer Center