Team Zoe.
I'm Deb. Aka The Debutaunt, aka Debster, aka Aunt Debby. I'm a mom with a sweet 8 year old named Zoe (that's her). And I'm one of those blogger people. I like to write. I have 6 siblings - 3 brothers and 3 sisters. I'm super tight with them. I don't call them by name, but I usually say Sis or Bro #1, 2 or 3.
Generally speaking, I've discovered that it is better to have a blog that is kinda like Seinfeld. Funny stuff mostly about nothing. And that is how it was for a while until my new adventure started in October.
On October 21, 2005, I was diagnosed with Acute Lymphoblastic Leukemia (ALL) that is Philadelphia Chromosome positive (PH+). Between October 2005 and February 2006, I had five rounds of chemotherapy. I was then going to have a stem cell transplant (aka a bone marrow transplant) because of the PH+ diagnosis. My oncologist said that if I didn't have the transplant, I'd definitely relapse. I lucked out in that my younger brother, Bro #1, was my 100% match. (only about 30% of recipients of transplants have a related match.)
A little less than 4,000 people in the United States get ALL each year. Most of those people are children. No one knows what causes ALL. I have no idea how I got it, and didn't have the typical symptoms, but I went to a local ER with a raging headache. The headache turned out to be a nasty sinus infection, but the bloodwork showed that my white count was 117,000. Normal is between 3 - 11,000.
When I was diagnosed, I was told that my daughter couldn't live with me any more because of the risk of infection (kindergarten cooties) Zoe lived with Sis #2 and her family for nearly 9 months. I think being apart from my Zoester was much harder than the cancer treatments.
On Sunday, February 19th, I was admitted to the hospital for a stem cell transplant. It is a serious, scary, and fairly rare procedure, but it is the best treatment for my form of the disease and hopefully will forever be my complete cure. I had four days of full-body radiation and chemo that is nicknamed Hiroshima. I was in the hospital for about a month. It was a horrible treatment to go through. (Not too bad for Bro #1 - as it was like giving platelets for him). I tried to write my way through it, because I equate it to childbirth. The longer you are out from it, the less you remember of it.
In May I contracted encephalitis - which is the swelling of your brain. It was bizarre and I was in the hospital - hallucinating, delusional, and paranoid for about three weeks. Why people do drugs on purpose, I'll never know. I feel completely lucky and blessed to be alive as I have had many friends this past year die of post-transplant related infections and diseases.
I am currently in remission and pray that I stay that way to live to be an old old lady. An old lady who is completely dorktastic.
In the meantime, I'm just growing out my hair, recuperating, making observations about what is happening and trying to focus on the positive and absurd stuff that could possibly come from this experience and share how much we should appreciate life - everything little and small, joyous, precious, amazing, silly, frustrating and annoying. You can take nothing in life for granted - so choose to enjoy it the best you can with what you have.
I am also on a mission to find a cure. Since I'm not a doctor or a researcher, I figured the best way I could help out would be to talk about cancer, spread the word about blood donations, guilt talk to people about signing up on the bone marrow donor list, and raise money. Lots of money. Because there are so many people who need help. We need to stop this horrible disease in its tracks.
Anyhow, I have had a lot of people email me about providing a link that says all the ways they can help with the stuff that is going on, so here goes:
1. Blood/Platelet Donations. Many, if not most, people with cancer undergo chemotherapy, which can temporarily reduce the number of circulating blood cells. The fatigue most cancer patients experience is caused in part by low levels of red blood cells (anemia), which carry oxygen to muscles. This is particularly true in patients with blood-related cancers such as leukemia, lymphoma, or myeloma, in which the disease itself can dangerously lower the body's production of blood cells
When my counts were low, there were a number of times where I had to wait for platelets or blood until after surgeries were completed due to shortages. There are shortages nearly every day they tell me.
If you live in Houston, you can make a blood or platelet donation at MD Anderson Cancer Center. Also, if you can, you can request the MD Anderson Mobile donation center to come to your place of business by calling (713) 792-7788.
If you live outside of Houston, well, just donate blood if you are able. I had over 20 blood transfusions. You might save someone's life. As many "someones" saved mine.
2. Prayers. I'm taking as many as I can get if you know what I am talking about. I forever will live in the shadow of cancer. I pray every day that I can remain in remission so that I can continue to help others. I feel so blessed and grateful to be alive, that I feel like I should honor the many friends of mine who are not.
3. Donate to the Leukemia and Lymphoma Society. Or participate in one of their events. I'm trying to raise a million dollars in my lifetime. I'm just stubborn enough to do it. Here is my 2008 donation site.
4.Sign up on the bone marrow donor list. Especially if you are a minority. Less than 6% of the registry is made up of minorities. You don't even have to give blood. They can do it through a cheek swab. But if you are chosen, you really could be saving someone's life.
5. Spreading the Word. If you know any other people who would like to help me with my fight, spread the word. The power of the internets is a funny thing - some of the best support I have received have been from people I do not know.
Anyhow, Sis#1 told me about a sermon she heard at her church. After Hurricane Katrina, her pastor did a talk about why bad things happen, and he said that he didn't know and hated to speculate, but what he did know is that God loves us, and wants us to be part of a community of people that helps each other. That as a human, you are to help others, and that even when it is difficult, you need to ask for help as well. That we are not islands. Some people in modern society think that churches are not relevant, that it is OK just to have a personal relationship with God, but I do think that as you grow and see the good and the bad of the world around you, it makes you realize how much having such communities to help is important, and how it is important to reach out to others, because that is what God's love for us is all about.
Not meaning to proselytize or nothing, but in the words of the not-so-successful-governor of Texas, Kinky Friedman, "May the God of your choice bless you."
Thanks for whatever support you can offer. It means more to me than I could ever express with words.
I love you internets.
And, as always, I will say (with your help) We can do this!!!
Besos,
~ Debs & Zoe