Dallas, Indian Food, Gratitude

Tomorrow, I go to Dallas for 6 days for what I call "spring break for data geeks."  Its actually the Teradata Partners Conference that brings together 3,000 data and analytics professionals from the top companies around the world.  I'm on the conference steering committee that plans the conference.  Normally, I have a good grasp of the conference details but I missed all of the planning sessions for this year except the first one in San Diego in February...and I missed half of that because I was too sick with the Amyloidosis to attend the entire meeting.

I always look forward to this meeting because I can talk data and analytics for 24/7....well, that's some of it but I also get to see a lot of former colleagues I've gained in my 15 years in this field.  It's a rewarding time both personally and professionally.  Because my team does such advanced work in the field, there are always a lot of companies that want to learn about what we do.  I have meetings scheduled with folks from a bank in Australia, a bank in Russia and an insurance company in South Africa.  Its always interesting to "talk shop"with folks from across the globe.

But this time, it will be different because it's in the "after."  My fellow committee members and some former colleagues know about my battle but many do not.  I'm sure I'll spend a fair amount of time talking about the disease, treatment and diagnosis.  But I'm OK with that.

It will also be the longest I've been away from Alan since my hospitalization and recovery.   When I was in the hospital, we were together at least 10 hours a day, 7 days a week.  For the 6 weeks after I was discharged before he went back to work, it was 24/7.  Before I got sick, I would have worried how that much togetherness would effect our relationship.  But during my hospitalization and recovery, he became my rock, my protector, my cheerleader and ass-kicker--most of the ass-kicking happened after I got out of the hospital and he pushed me to regain my strength.

We went out to dinner tonight at an Indian Restaurant and talked about my upcoming trip and reflected on my hospitalization and recovery.  We both agreed that it felt like that time was 2-3 years ago, not 5-6 months ago.  I think its similar to what happens when you have a baby.  It's so painful at the time but the memory of the pain fades away.

We joked around about his gruff bedside manner with his hospital patients and I complimented him on how caring and patient he was with me in the hospital.  I said, "But, you were kind of an asshole when I came home pushing me so hard to regain my strength."  He said, "Honestly, there were times I looked at you and wondered if you'd ever get back to some version of normal."  But we both commented on how quickly a decent version of normal has returned.

I still spend a lot of time reading the medical literature on the disease and I'm watching videos from a semester-long immunology course from UMass so I can better understand the science behind the test results I now watch like a hawk--monoclonal protein immunoglobulins, serum kappa free light chains, serum lambda free light chains, serum kappa/lambda ratio.  I check my test results as soon as they come in and ask questions when I see anything that looks like variation.  I'm sure my doctor's nurse practitioner gets tired of my questions but, as I told her, I have an almost post traumatic stress reaction when I see things change.  The reaction is getting less extreme as time goes on.  Maybe that's part of my "new normal."

I'm now at a point where I can talk about the stem cell transplant without crying.  For the first few months after, any discussion of it would take me back to that scary place.   The transplant itself wasn't scary but the pain from all the fluid was. I cried a lot after my diagnosis and during my treatment and recovery.  Those were tears of fear, pain and emotional despair.  I still cry more than I used to before my diagnosis, but now, those are almost always tears of gratitude--for my transplant response, my prognosis, my husband, my daughters, my sisters, my family, my church family, my prayer warriors, my friends, my coworkers.  I have so many things for which I'm grateful.

I subscribe to an Amyloidosis Support Group on Yahoo.  Tonight, the president of the support group sent out a note about a 57-year-old woman who just died from the disease.  She shared this in the discussion...

Dr. Vescio coined the phrase that “Someday this disease will be a treatable nuisance”…and we know he meant if diagnosed quickly and treated well…and Dr. Skinner at a meeting recently said that this disease, in her mind, was almost at the “chronic stage” and we know she also meant if caught early….and treated well so it does all go back to awareness..

Both of those physicians are among the top Amyloidosis specialists in the world.  It's encouraging to see their perspective.  A chronic disease like diabetes or asthma.  So maybe it is incurable.  For me a 30-year remission is as good as a cure.  I get more and more hopeful that its possible.

So, tomorrow I take another giant step toward the old normal...or adding to my new normal.  I'll miss Al but we both agreed that this is much more like normal.  Look out Dallas.  I'm back and better than ever!