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.

Monday, August 30, 2010 – Day 1

Gathered in my living room last night were some of the best friends anyone could hope for: Barbara and Jerry Bowns, Pam and Wayne Thomas, and Janet and Steve Smith. One of our less weighty discussion items was what to call this new blog of mine. If you are reading this, you know that a couple of weeks ago I was diagnosed with a rare non-Hodgkin’s lymphoma, Waldenstrom’s macroglobulinemia, to be precise (“WM” for short). Janet has just run the gauntlet of surgeries and chemo for breast cancer, and she highly recommended a blog as a helpful way to keep informed those who wish to be kept informed. The Smiths’ daughter, Shannon Hyer, quickly created the blog for me (thanks, Shannon!) so I could launch this blog on Day 1 of my chemo treatment, and all I had to do was come up with the catchy name.

The thing is, Janet came up with a title for her blog which I have thought truly shows her courage in her humor: The Flat T-Shirt Report. The pressure was on, and I was drawing blanks. By last night, I had hit the mental – and emotional – wall from two weeks of intense processing, researching, thinking, analyzing, planning, explaining, questioning, praying, deciding, organizing. . . .and besides, I usually leave being clever to Jeff Parkin.

Then Janet threw me a lifeline: is there a sailing term you like? And then another lifeline from Pam across the room: what about a musical term? That was the inspiration I needed and one term about sailing AND music came to me instantly: “Wing on Wing.” I think sailing wing on wing is a fascinating and beautiful technique to help keep your momentum going forward in the challenge of sailing in light wind. By setting one sail (the mainsail) on one side of the boat with the other sail (the jib) on the other side, the effect is to produce the maximum amount of sail area with the two sails spread out 180°. Looking at the mast towards the front of the boat, the sails look like the spread wings of a bird. Akemi and I have just returned from a wonderful trip to Maine where we sailed Penobscot Bay in a 90-foot schooner. Sailing on a double-masted windjammer with four sails set wing on wing was a majestic sight to behold.

In addition, Esa-Pekka Salonen composed a piece written for the opening of Walt Disney Concert Hall entitled Wing on Wing in homage to architect Frank Gehry’s design concepts for the hall as billowing like wings of sails. (This is a photo that Akemi took at the time of WDCH’s opening in October 2003.) So there you have it: a title with sailing and music connotations.

After my dear friends left me to carry on with the rest of my preparations in anticipation of a month of chemo, I started to feel more and more that “wing on wing” captures what I’m feeling right now. At the risk of stretching the metaphor, I think this little-understood cancer of mine is indeed like sailing in light wind. It’s squirrely – you might have an idea of what you’re dealing with, but you really don’t know what’s going to happen next. It’s not a good thing and definitely a challenge, but it’s also not the worst thing, either – we serendipitously caught it early, and I have some good prognosis factors going for me. There’s not a lot you can do in light wind, but you can do something – the frontline course of treatment for WM for my situation, at least at this moment, is established, and it was deemed important to start treatment right away. So the goal is to make the most with the wind you’ve got until you can go back to zooming along in stronger wind – which means for me getting through the chemo, hoping it puts me into a long-term remission, and assessing research on genetic implications and treatment options for the future.

So today on the first day, I was at USC Norris Cancer Hospital and Center in the day hospital section for about nine hours, getting a combination of a chemo targeted to clear out the lymphoma cells in my bone marrow and a drug to help boost my immune system to get and stay on top of taking out lymphoma cells that my bone marrow will produce going forward. Today was the longest day; treatments the rest of the month are shorter.

Future posts will be about how we even discovered this, what is known – and not known – about WM and its treatment, and what it means for my family and me. Right now I actually feel okay but am waiting for the other shoe to drop. I’m not supposed to lose my hair or be violently nauseous, but I’m told the side effects feel as if I constantly have the flu: low-grade transient fever, muscular aches, and extreme fatigue. The nurse today said to watch out for the second week. More tomorrow about the incredible support system I am blessed with here in Pasadena. In the meantime, thanks for all the good wishes and prayers. I’ve needed them, and have benefited from them already.