Concocting a Cure for Waldenstrom's

I’m a single professional woman living in San Francisco. Currently, I write cookbooks for professional chefs and have been writing about food and wine for more than 25 years. I have always been an active person, used to running daily, up to 6-8 miles. I loved backpacking and hiking.

But by the late 90s I began feeling weak. I noticed that I could get fairly strong by taking my dog up every hill we could find (Twin Peaks, the forests above UCSF in San Francisco) but I couldn’t depend on my strength–it would seemingly melt away within days. I also began getting migraines and felt dizzy and out of breath when toweling off my dog. I chalked it up to age and menopause.

But, at age 50, after years of seeing no doctors, I thought I would be a good citizen and take myself for a check up. That turned up some anemia but enough to make the doctor wonder why. More tests ruled out iron or B12. Even though I was ready to drop the investigation, the doctor referred me to a hematologist.

When I first went to his office, I did not know that hematologists are often oncologists as well. When a nurse burst into the examining room where I was waiting to see the doctor and asked if I’d had my chemotherapy yet, I became very anxious. The oncologist did more blood work and finally a bilateral bone marrow biopsy.

On the day of the test, he told me, because of the high protein level in my blood (total protein 8.9 g/dl with 3.2 g/dl gamma globulins and a monoclonal component registering in the gamma globulin region), that he thought he knew what I had, and wrote the name, Waldenstrom’s Macroglobulinemia, on a little slip of paper and mentioned that he thought there was a web site. (Note: Now I know what those numbers indicate, then they were Greek.)

I had walked from my house that day, a heart-pumping hill climb up 17^th Street in SF to the doctor’s office across the street from the UCSF Medical Campus. I left, sore and scared, and walked home to take a nap. I woke up with the idea that I’d go to the library and check the Merk Manual, fearing I would have no luck finding the IWMF web site. There I read the scary words "cancer", plus the then indecipherable "indolent" and "low-grade", as well as the "untreated survival rate of five to seven years".

Feeling completely alone and helpless, I wondered if I would outlive my animals. The next day, I found the IWMF web site easily. I logged on, sent in my registration, and before I logged off, the founder, Arnie Smokler, was on the telephone to answer questions and reassure me. "People live a long time with this," he said, "even 25 years." I needed that number. When my oncologist said "people live with this for years and years", I was suspicious. How long is "years" to an oncologist, I wondered?

When the preliminary results from the biopsy did not show the number of abnormal cells my doctor expected, he withdrew his diagnosis. So maybe I did, maybe I didn’t. Finally, he spoke directly to the pathologist who had run the test and they agreed in January 1999 that I had WM. It took a good while before I could say it and longer before I could spell it.

At diagnosis, my numbers were not so bad: IgM of 2691, serum viscosity of 2.43, and hemoglobin of 9.9. Having been told this was a slow-moving cancer, I thought I would not have to make a treatment decision for a long time. But I did read the listserv regularly and began to take abstracts of articles posted to the site to my doctor. He always looked at these and sometimes he had not yet seen them. This helped me feel that I was contributing to my own care.

Luckily for me, the 1999 IWMF Patients’ Conference took place in San Mateo, very close to me, in April. I admit that I wondered what people would look like–would they look sick?–and was relieved that they looked pretty much like me.

Over the months after diagnosis, I battled with anxiety and continued to get weaker. I noticed, for instance, that several times while stopped at traffic lights, I released my foot from the brake too soon and tapped the fender of the car in front of me. There was no damage and the other driver and I shook hands but, inwardly, I was shaking. Walks that used to be no effort were becoming harder and the sixteen steps up to my front door left me breathless.

What is so pernicious about this disease is that it is hard to see and harder to understand. My color remained good even as my hemoglobin dropped so I never looked anemic. When I talked about feeling lethargic, people asked if I was depressed. If I mentioned that I needed to nap and did not have the energy to push a vacuum cleaner, they said they felt the same way. It seemed everyone had a diagnosis for me but it was never cancer.

These "diagnosticians" meant well. They wanted to reassure me, to make everything okay. But instead, I felt alone with WM (except for our online support group), that somehow I had to fight to make myself understood. Eventually, I came up with a comparison that seemed to register with people: I compared WM to driving a car with ever-dirtier oil. That this put a tremendous strain on all the body’s systems.

Finally, in September 1999, my oncologist would no longer allow me to postpone treatment. At that time, my numbers were: IgM, 6300; serum viscosity, 5.5; hemoglobin, 8.3; total protein 10.5.

I had noticed by that time that whenever I was in the doctor’s office–I had been going to see him alone–that I went into a state of shock and didn’t really hear or understand what he said. So, when I had to make my treatment decision, I took a medically sophisticated (and breast cancer survivor) with me to make sure I understood what was going on.

We chose Fludarabine plus Cytoxan, three days on and three weeks off. I wanted to go with Rituxan, but it was still rarely used as a first line treatment then. And, too, my doctor wanted results FAST, as he felt I was bordering on needing transfusions and the high serum viscosity worried him. Eventually, I would complete five rounds of Fludarabine and Cytoxan with the time between rounds being extended to four weeks followed by four weeks of Rituxan. Stubbornly, I refused to take either epogen or neupogen shots, but I just could not stand the idea of any more needles nor even the thought of any side effects.

Just before treatment, I had an attack of vertigo, brought on most probably by high serum viscosity. It woke me out of a sound sleep and was worse than any college experience of drunken dizziness. It was the first time I seriously contemplated calling 911.

Facing the prospect of treatment, knowing that the doctor would be pumping me full of poison, was the most terrifying experience I have had to face. I had the very unfortunate experience of another attack of vertigo just as the first day of infusion was completed. I spent the rest of the afternoon puking until the doctor said I needed to see if I could pull myself together to get home or he would have to send me to the hospital.

That warning helped me rally and get myself into a wheelchair and into a friend’s car. More friends met me in the driveway and helped me up the stairs and into bed. Later, another friend arrived and spent the next several days with me. I am most fortunate that several of these friends are nurses! It is ironic that during the next day’s infusion, when I was in tears with pain and my caregiver suggested the doctor give me pain killers, he had none in his office. I could not help but joke: "They only poison people here."

But by the end of the first week, I was feeling not only better, but better than before treatment and began to understand why I was going through this.

However, I did break out in a bad rash with big, itchy blisters that worried the doctor. Not knowing what they were, he gave me massive doses of anti-virals and antibiotics. The rash quieted but all that medication took a toll. The body rash has returned several times, never as badly as the first time, and a prescription cortisone cream relieves the itching. I also got dandruff and my doctor said this was common among people with weakened immune systems. Again, another topical cortisone medication brought it under control. It, too, continues to come and go.

While my doctor had counseled me to get a wig, but I couldn’t bring myself to do it. When my long hair began falling out, each strand felt like a tear. I had it cut so short I was no longer aware of it falling out. And I never lost it all though it got so thin I could easily see my scalp and when I looked in the mirror the person I saw looking back was my mother at about age 85.

By the end of my fourth round, the doctor charted my progress and began to worry that he was only giving me doses of toxicity for little to no result. But we agreed to pursue the regimen with one more course and that is when the, until then, unthinkable happened. I was overdosed. Thank goodness, I complained so about being nauseous and weak that the doctor took a second look at my dose and discovered that he had given me my full three-day dose plus some in two days.

I am now in partial remission and holding steady. Soon (March 14, 2001) I will celebrate the first anniversary of my last infusion. I remain slightly anemic at about 11 and my IgM is around 1400 while my serum viscosity is normal at 1.7. Naturally, I wanted my cancer to continue to diminish but that it is instead just holding steady.

Just as I completed treatment, I took on a writing project. This was to write the content for a web site for Michael Chiarello, with whom I have written three cookbooks, the most recent of which is The Tra Vigne Cookbook. It was exciting to learn that I could again concentrate and put in hours.

Then in the summer, I took on another writing project, doing research on spices for a client. I also turned down three cookbooks which gave me confidence that my time out of circulation had not cut me entirely out of the loop. Right now, I am developing a cookbook project with another chef and sketching out ideas for a little book of my own.

Finding a balance between work and downtime is an ongoing exercise. I have always worked best when a deadline loomed and cancer is a sort of deadline. One that I am still learning how to meet.

I have lived my life as a loner–with a lot of friends. Cancer crashed through that perception. My sister came from Florida to care for me during a treatment round. My roommate from prep school arrived from Pennsylvania for another. Friends accompanied me to every chemo session and often read to me. Once a friend juggled and made balloon animals just like at the circus.

Several times during infusions, something would strike a friend and I so funny that we would burst into such gales of laughter that the doctor and nurse would come in the room to get in on the joke. Someone always stayed with me the night after the first infusion of a monthly round. It wasn’t really necessary but the nightmares and nausea I had had the first few rounds so scared me that I just did not want to be alone.

My friends taught me that I was held firmly in the web of life, despite my thrashings, and strangely, I was profoundly happy.

Cancer taught me the visceral meaning of gratitude even as it stripped me down to the bone. For me, a diagnosis of cancer was not a thrown light switch illuminating a suddenly new and different landscape.

Instead, rediscovering my life is a long process of testing. Just recently, after scuba diving for the first time in ten years, and then a few weeks later, hiking into and out of the Grand Canyon on my own two feet, I have begun to trust that yes, indeed, I will live.