A New Decade Begins

Decades make me pause. Individual years trip merrily along and things change slowly as the calendar flips from one month to the next. The days grow longer for a while and then shorter for a while, longer, shorter, longer, shorter. But decades are different. Chunks of time. Chunks of changes. Ten years ago I was beginning to feel grounded in my Costa Rican home. We had a family farm in Silverton. I was on leave from a fifth grade teaching position, Peter and Hope were newlyweds. Gretchen was living in Idaho working in the beauty business.

Now the farm is sold; we’re living in Ashland; Gretchen lives here too and has been working in retirement communities for the past four years; Peter and Hope have two children, Jude and August; Jim is fully into retirement mode, and I’m just about retired (still working part time in the schools and for the Oregon Writing Project, but it’s winding down). So the decade is kind of buttoned up, and it has been full of adventures, new learning, and transitions. As this new decade begins, our family is transitioning into a new kind of challenge. Having pretty much taken good health for granted and, I must say, having been a bit cocky about my strong body and healthy life style, I was shocked last October to get a diagnosis of cancer.

Many of you already know this and have been wonderfully in touch over the last few months. I know that you want information regarding how things are progressing and what is going on with me, so I’ve decided to put you into a group e-mail. This way I can keep you up to date without feeling negligent that I’m leaving anyone uninformed. For those of you who are just learning I have cancer, I’ll begin at the beginning.

In September my rheumatologist was concerned about a spike in one of my blood proteins and recommended I see a hematologist. She was also concerned about my blood and sent me for a bone marrow biopsy. This came out positive for a rare, slow growing non-Hodgkin’s lymphoma called Waldenstroms Macroglobulinemia. It is an incurable cancer of the blood and lymph system, but it is treatable and if the treatments work well on this body, I should have this whipped into remission in six months. After that, it’s a “watch and wait” and when it gets active again we treat it again. The good news is that there is a lot of research going on for WM now and it is anticipated that a cure will come in the next few years. (See brief description at the end)

Because it’s a very slow growing cancer, I’ve had time to explore what it means and how to get the best treatment. My research led me to a Dr. Pamela Becker (Harvard trained, residency in Boston, lived in Brookline, MA…. etc. and works with a top researcher in the field of Waldenstroms). Jim and I went to see her on January 6th at The Seattle Cancer Care Alliance and found, to our surprise, that my lab tests done in Medford indicated I was in need of treatment right away. This led to more lab work, more information gathering, and the decision to get started with chemotherapy Jan. 26th here in Medford, the city fifteen minutes up the road from Ashland. The Seattle doctor set up the protocol for treatment and the Medford doctor will oversee it. It’s a six-month regime, so I’m pretty much tethered here through July.

The symptoms I’m trying to get rid of are high serum viscosity. Basically my blood is too thick because the immune globulin M is making too much protein. The other part of this is the anemia (no more iron doesn’t help), so I feel anemic and lack the energy to do what I used to do. My hiking partner likes that because now I walk at her pace. The local yard maintenance team like it because I now hire them to prune the hedges and rake the leaves. So there’s good stuff going on!

I have had two treatments so far. Jim has been my sidekick and support for all doctor appointments and treatments, and has been wonderful about talking through the tons of research and questions I’m raising and Gretchen comes to every doctor’s appointment and infusion session to get the information from the doctor and to hold my hand as they prod and poke and get the infusion going into my bloodstream. I just about broke her hand on the first infusion, but yesterday was much easier. Because blood draws and infusions will go on once a week for six months, I’ve decided to get what’s called a port inserted in my chest. With this, the blood can be drawn and the infusion given with the same needle (I know my brother John is fainting right now…enough information!).

So that’s what’s going on in my world. It comes on the heels of spending most of December and January in Portland where I rented a house five blocks from Peter’s family. That was a very special retreat for me. I walked the kids to and from school, hung out at the local tea house, walked all over Northwest Portland, reconnected with old pals, had a week long visit from my sister, and spent lots of time being Granny, my most favorite role in life so far!

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What is WM? Like lymphoma, it has an uncontrolled proliferation of B Cells which are white blood cells formed in the bone marrow and lymph nodes. These cells clog the bone marrow inhibiting the production of vital red blood cells, resulting in anemia. Unlike lymphoma, the cells also produce excess amounts of an immunoglobulin protein, IgM, which thickens the blood and, if left untreated, can cause additional complications. It is a rare disease, affecting only about 1,500 people per year in the US. Fortunately both the anemia and the blood thickening (hyperviscosity) respond to treatment.