Sunday, June 12, 2016

Working for a Cure

Yesterday was thankfully uneventful. I got my second infusion and slept away most of the day. I did not pass out yesterday, or this morning when my standing blood pressure was taken. My eyes have started swelling up, but so far my vision is fine. With the shift from 6L to 9L in water a day I have gained 8 pounds in 2 days. It was about 15 pounds that I retained in water with cycle 1 and it came off in a matter of days after I got home and was put on the meds to flush the excess water out.

It was a big day at home yesterday, the Moss Ave Sale. Annually, our street is blocked off and people's yards are rented out to Antique dealers, crafts people, and food trucks. Then there is live music every few blocks. Even though we were not living in Peoria yet last year, Chad was here working, the girls and I came in town for the weekend and loved it. The girls have literally been working all year crafting for it making jewelry (earrings, necklaces, and cuff links) out of polymer clay, and in the case of the cuff links antique typewriter keys and bottle caps, too. They also had drinking glasses they had painted and old books they had carved out to make book boxes.

In total, they made $240. They want to donate this to LLS (Leukemia and Lymphoma Society). I'm so proud of how hard they worked. Chad said they did a great job talking to people when they came by, and it was a brutally hot day yesterday day.

My brother in law, John, is also helping fight for a cure. He is doing the PMC bike race to raise money for cancer research at the Dana-Farber Cancer Institute. Below is the link if anyone is looking for a great cause to support!

When you get admitted at NIH and sign the consent forms, under your name it asks for the signature of the "Patient / Research Participant". I have approached this as the best shot I have as at a more durable remission, and think of myself as a patient, but the longer this process goes on the more I have realized I am a Research Participant and it is different than a well established drug, or protocol. Hopefully what comes out of this trial is not just a better outcome for me, but also many others, through a new approved drug.

On many fronts, my family is working for a cure. Hopefully my children, and their children, will have far more effective options to treat cancer.

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