I wanted to offer an apology, but that doesn’t sound quite right, Maybe more of an explanation. Most of us keep our RL and SL two separate things. Few people reveal their real selves. For me, it is getting harder to keep them separate. RL keeps kicking in the door and it is affecting my SL.
For some of you old timers, you may remember this… 7 years ago, Flynn was diagnosed with Myelodysplastic Syndrome (MDS). It is a rare blood failure disease… cancer actually, that if left untreated progresses to AML (leukemia) and death. Although there are a variety of ways to treat it, the only treatment that offers a cure is a Stem Cell (Bone Marrow) transplant. In SL, he worked with RFL, promoted causes for the American Cancer Society, and stem cell research, to name a few. At the time, he told a few people about it, but didn’t make it into a big deal.
When he was diagnosed, we went to Seattle to a pre-eminent center that works with MDS. They wanted to go to transplant treatment immediately. They believed in treating it very aggressively. Unfortunately the survival rates at that time weren’t very good. Flynn felt that he was not prepared to go into immediate treatment. We sought a second opinion on treatment. We went to another very highly regarded center in St. Louis. Although the treatment was the same, the doctor there felt that the quality of life you have before and after treatment is extremely important. More over, Flynn was relatively healthy. He was young. This doctor did not feel that immediate invasive treatment was necessary. That we could wait until it appeared to be necessary, that treating it immediately would not increase his survival rates any more than waiting, as long as we caught it before it transformed into AML (that is the tricky part).
So we waited. Typically, this proceeds from diagnosis to end (either treatment or death) within 2 years. Some of you may be scanning back. Yes, I did say diagnosis was 7 years ago. Flynn never does anything in the typical fashion. Why should this be any different? While we waited, he decided that in order to fight this, he needed to be in the best health possible. I used to joke that he went “granola”. In actuality, he started eating only organic whole foods, receiving acupuncture, practicing Taiji, Qigong, meditation. He credits this to stabilizing his cancer for seven years. Although chinese medicine cannot cure MDS it can compliment the treatment of it.
So, we waited, and lived, and played, and waited. Since this is a blood failure issue, what happens is the blood cells start to stop maturing fully. Dumbed down science lesson: red blood cells carry oxygen to all the parts of your body, platelets cause the blood to clot in wounds, white blood cells fight infection. Oddly, all three come from the same stem cell, they just turn into the blood types that are needed. When the blood cells can’t mature these things stop happening. Over time, as the disease progresses, the ability of the blood cells to mature gets worse and worse. You get tired easily, simple cuts bleed like crazy, you bruise easily, and you catch every damn bug that you come across (and they become very hard to fight off).
But like I said, Flynn was healthy, so setbacks were minor and able to be over come.
Until the end of 2012. Suddenly, he was catching one virus right after another, with out having the chance to really recover in between. His blood counts were terrible. They could have been worse. Some people become transfusion dependent. They get blood and/or platelet transfusions several times a week. Luckily, Flynn has never got to that point. But he was sick, it felt like, all the time. We were in the hospital several times. He is in the hospital right now, because he developed a fever and a fever is a big no-no, since he is unable to fight off infection. So anyway, when we went to see his doctor in St. Louis in January, he said it was time. We got a lot of extra years that most people don’t get. But let’s not push our luck.
On February 27th, Flynn will be admitted to the hospital to begin treatment. That treatment is eight days of intense chemotherapy. That is to basically kill of all the growing cells in his body. Sounds barbaric, doesn’t it? Then he gets a couple days rest. After that they infuse him with donor stem cells. That is the transplant. Then we wait and pray that the new cells and his body decide to play nicely with each other and live in harmony. The new stem cells become his and teach his body/marrow how to produce good healthy blood cells that mature fully and do their job and keep him alive. Only after it looks like the new cells have accepted their new home and start giving him some immunity again will they release him from the hospital (about 30 days). Then he has to stay within 20 minutes of the hospital for another 30 days, just in case. We live 120 miles away, going home is not an option. So we have to rent a place to stay for those 30+ days.
The good news about waiting so long, other than just the extra years we got, is that the medical field has made great strides in the transplant process and outcomes are much more favorable than they were 7 years ago. That means Flynn has a better chance of fighting this thing and surviving.
(Are you still reading this? God bless you!)
So what does all this have to do with SL? It means that my RL plate has become so full, that I haven’t had as much time for SL. I haven’t surfed in, it feels like forever. I don’t get to log in everyday. I am not able to put together the variety and quantity of posts I want for Surf Side. The next two weeks are going to be jammed with Flynn and me trying to get ready to move to St. Louis for 2 or more months.
I will post and report on the goings on as often as I can, but honestly, not as often as I used to. The good news is that this is temporary. When we have gotten over this hump and Flynn is truly on the path to recovery and remission, I plan to be back bigger and badder than ever, to annoy you with my surf blathering.
On that note, I will stop… a couple of great places to visit if you haven’t already are Kantbe Thursday’s blog, Kantbe Serious, and Sunshine Zhangson’s blog Sol Existence. But I am not going anywhere, I will just be a little scarce for a while.
Thank you to everyone for reading and supporting me and my blog. And to everyone who has been made aware of Flynn’s situation and what we are facing, thank you from the bottom of my heart for your love, kind words, support and positive energy. If you would like to follow our journey in RL, you can check out our blog from real life chronicling this adventure, Just Flow.
If you want to do something, to make a difference, to save a life, consider being a bone marrow donor. Registration is easy-peasy. Be the Match. It’s also a great place to get more information on the diseases and the treatments.
Mahalo and much Aloha,