Rare Disease Day 2013

rarediseaseday2013banner

Rare Disease Day is here again – 28 February 2013. Congrats on their sixth anniversary!

This year’s slogan “Rare Disorders without Borders” emphasizes the need for international cooperation to find drugs and treatments for the 6,000 to 8,000 rare diseases/disorders.   The lack of scientific knowledge and quality information on each disease often results in a delay in diagnosis. The need for appropriate quality healthcare magnifies the inequalities and difficulties getting access to treatment and care.   And because of the broad diversity of disorders with relatively common symptoms, initial misdiagnosis often occurs.  In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

Continue reading

Third Cancerversary and More

Three years ago today, on February 5, 2010, I saw a 6.5 cm mass on the CT scan of my abdomen and knew that my life was suddenly changed.  Cancer.  No warning, no prep.  Just wham, down for the count.

The months of chemo, surgeries, sweat, tears and trips to Houston and the fantastic folks at MD Anderson are a blur from this vantage point. (I do have a 6-month check-up in April.)

Today, I’m much more at ease cancer-wise than at this time last year or two years ago.  I’m so very thankful to still be here!  I am a three-year cancer survivor.  There was a time that I didn’t think I’d be here to say that.

Continue reading

So Much to Say

Where do I begin?

Good News

  • My little friend, Kethan, is doing well. He’s just going through the mind-numbing wait for his new bone marrow to grow and mature until his counts are higher and stable.  Going through the targeted gene therapy, chemo, radiation and then the bone marrow transplant process over the past five months has been no easy ordeal for Kethan and his family.  He is nothing short of one strong, amazing kid.
  • Last week, my mom and I had our four-month check-ups at MD Anderson.  I still have no evidence of disease (next month will be two years disease-free) and I have been moved out to a 6-month check-up schedule.  My mom’s low-grade b-cell follicular lymphoma is still stable.  Can’t get better than that.  We are both so thankful.

Not So Good News

  • My dad passed away this past April from a massive hemorrhagic stroke.  Losing my father was, and still is, painful.  But the experience left me with a gift.  Within days of his death, whatever baggage I may have been carrying around fell away.  With such clarity, I felt as if I fully understood who he was and the intention with which he lived his life.  I’m so thankful for the close relationship we built over the years.  My dad had a tremendous and profound effect on me. I miss him so much.
  • Two of my Appendilooza pals relapsed this past spring.  One brave Appendilooza pal underwent HIPEC in August and –  hooray – has no evidence of disease again. My other Appendilooza pal, Randy, is undergoing more chemo as his surgeon advised no surgery at this point. We are rooting for the chemo to shrink the tumors or at least hold them at bay!  These two relapses of close friends definitely threw me for a loop.

Curveball

  • About a month ago, my long-dormant brain arteriovenous malformation (AVM) decided it was time to get some attention. After a morning swim, I had a small hemorrhage in my left frontal lobe where the AVM is located.  The bleed was so slight that I just thought it was fatigue from the work-out and drove myself home. But the effects were just setting in. I had some difficulty with word-finding and slight right-sided weakness in my arm and leg.  After an MRI showed the bleed, I spent a couple of days in the hospital for tests, observation and then was discharged with instructions to rest.  I slept for almost two weeks straight. Sleep is how the brain handles trauma and is needed for healing. Then two weeks ago, I came out of hibernation, regained most of my energy, my word-finding difficulty quickly resolved and I have full-use of my right side. Just a little residual weakness.  You almost wouldn’t know anything had happened. But it did. So now my doctors are exploring ways to prevent this from happening again.  Thank you for your help and prayers during this rough patch.

I am reminded, once again, that life is unpredictable. So my advice to you – go play, dance, hug and kiss the ones you love! And let them know everyday how much they mean to you.