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.