Continuing my trend of writing from exotic locations (and I mean that a bit tongue-in-cheek), I am on Long Island today, mixing some business and some pleasure. The best part of this trip is staying with Mom. There is just nothing like time with Mom.
Mom was at my house two weeks ago, for the first time since my sister Deana was diagnosed with multiple myeloma. This is my first visit to her house since late April 2011 as well. These happenings, while seemingly minor, serve as reminders that we are thankfully residing in “the new normal.”
Deana’s September appointment with Dr. Agha was terrific. Her hemoglobin was 11.7 g/dL, and her IgA protein was below the normal range. If she were in kindergarten, she would have come home with a big star on her paper – and Mom would have promptly displayed it on the refrigerator. There is nothing more we could hope for right now…except for a cure.
Deana’s next appointment with Dr. Agha is December 17.
Deana, our sister Darrie, Mom, and I will have just returned from a mother/daughter trip that Deana arranged back in February. The trip was planned to coincide with my late father’s birthday, and it will be very nice to all be together that day to remember the man we loved so dearly and miss so deeply, even more than 17 years later.
At Deana’s appointment with Dr. Agha, there will be many issues to discuss. This appointment will be the first since Deana’s new birthday – November 23 will mark the one-year anniversary of Deana’s stem cell transplant. With the one year anniversary of remission also approaching on January 25, we need to dialogue about his plans for Deana’s future treatment.
In late January, he indicated Deana would take maintenance Revlimid for a year. In much of my reading and research, I see that some of our fellow multiple myeloma warriors engage in some type of maintenance treatment for longer periods of time. While I know Deana is anxious to be done with taking pills, we want to do all we can to be sure that we choose the best course of action to keep Deana in remission. We are doing well with “the new normal” and want to stay on track.
It feels strange not to have seen Deana for 10 weeks. Being with her, Darrie, their children, and Mom every month (and sometimes more) for the period of Deana’s treatment was a pleasant byproduct of a really awful situation. I find myself missing my sisters, nieces, and nephews a lot.
Thankfully, I’m only three weeks away from seeing Deana, Darrie, and their girls, Kate and Clare. We’ll all gather for the Marine Corps Marathon the last weekend in October. I am again participating and will be holding thoughts of those of you I have met through this column and elsewhere and will honor your multiple myeloma journeys as I traverse those 26.2 miles.
As always, there’s more I could share, but literally, I’ve gotta run…training for a marathon is akin to taking on a part time job!
Bringing this column to a close, I want to offer special thanks to those who share comments month after month. I appreciate every one.
Deborah Dietzler is a columnist at The Myeloma Beacon. Her sister Deana has multiple myeloma.
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