Tuesday, August 31, 2010

Tuesday, August 31, 2010 - Day 2

Last September, just after I returned from Boston helping Akemi move into her freshman year dorm, I tripped and gracelessly fell down the stairs going into Vroman’s Bookstore on my way home from work on a Friday night. I caught my breath, brushed off my skinned knee, and carried on with my errand – no big deal. But over that weekend, I realized I had really bruised my left leg, which continued to swell. I ended up spending four unfortunately exciting days in the hospital before the bleeding stopped.

Because the bleeding was suspiciously like the bleeding I sustained many years ago which resulted in a life-threatening subdural hematoma, I got referred to a hematologist with USC Norris who specializes, among other things, in bleeding disorders. She diagnosed me with a platelet disorder which I have had all my life undiagnosed, and which most likely inherited from my father, who suffered a similar serious bleeding episode.

In the course of analyzing the sophisticated and extensive blood panels, the hematologist, also a leukemia/lymphoma expert, picked up an abnormality that is linked to a particular lymphoplasmacytic lymphoma called Waldenstrom’s macroglobulinemia. Now you see where this story is headed.

The hematologist continued to monitor my blood levels and my platelet level continued to steadily fall. By the end of July, my platelet level had fallen to a clinically low level, and I agreed with her call that I needed a bone marrow biopsy. I got the results with the WM diagnosis hours before I got on the airplane to meet Akemi for our Maine vacation.

It was a real blessing that Akemi and I had the time to process the news together. We concentrated on having a good time, and we had many great experiences. I felt fine on the trip as long as I didn’t get overly tired, and I was very, very careful not to get bruised or hurt sailing. When the captain invited me to climb up on the cabin top to help flake (fold and take down) the mainsail one night as we were anchoring, Akemi gave me the evil eye which kept me standing by on the deck, lest I got konked with the boom or sustained some other injury. (Her flaking job, for the record, looked textbook perfect.)

It’s only Day 2 and already I’m considered a regular in the Day Hospital. “Good morning, Susan – how are you feeling today?” Tonight I am starting to feel the saliva glands drying up. But a dry mouth didn’t stop me from savoring Bonnie McAlister’s homemade chicken soup and Aubrey Poffenberger’s homemade bread with her special mix of whole grains. It was a tough job, but someone had to do it.


  1. Susie, thanks so much for setting up this blog and letting us follow your progress. I love reading what you write (even when it is about difficult things) just because I feel like you are talking to me. Your writing is so genuine. You have such a great way of expressing yourself. We are thinking of you and sending up prayers on your behalf. I know you have heard this a million times, but if you need anything, we are here.

  2. So glad you are doing this! We are thinking about you and praying for you over here! I love all the info you are giving on your blog. And FYI, when all is said and done, you can have the blog printed into a book as a journal...I plan to do that for my mom...I'm working on mine right now.