January 9, 2013 Update
Sadly we learned that Marty passed away on Friday, January 4th. We, here at Lazarex, send our love to her family and friends. Thank you Marty, you brightened our world and gave us inspiration.
September 25, 2012
This morning I received the email that confirmed the clinical trial drugs I am taking are still working. My husband, Paul, and I travel to New York City once a month so that the medical team conducting the clinical trial can run multiple tests to see how my cancer is reacting to the “cocktail” of drugs. Unfortunately, the test results are never back while we’re in New York, so we return home with uncertainty, and wait to hear. But so far, so good!
I was diagnosed with multiple myeloma in 1996, a cancer of the bone marrow that was, for the time being, indolent or lazy. Encouraging words when you’re describing cancer! My doctors all said “let’s watch and wait, as the treatments we have are not curative, and are more toxic than the disease right now.” That didn’t stop me from changing my life style, embracing acupuncture, qi-gong, well supervised vitamin supplementation, learning to work less, play more, saying “no” far more often than I thought possible.
During the ensuing years I fell in love with Paul. He knew I had this diagnosis, but it never seemed to rise to the surface as a big issue, or “deal killer”. Maybe it was because we were both naive? In January of 2003, Paul asked me to marry him, and we had the most wonderful, happy, fantastic, fun, intimate wedding that year in August. Paul, a chef, cooked the meal for over 100 family and friends. We danced, we sang, we feasted.
One year later, my myeloma decided to stop being lazy. Since that time I have been through a failed stem cell transplant and countless drug treatment regimens with all of their attendant side effects. Some of them are more successful than others, some of them more tolerable than others, but always, eventually, my disease develops resistance and I must move on to the next available drug or combination of drugs, one notch weaker, and with just a little more fear lodged behind my throat. Yet through thick and thin, Paul helps me laugh. Always, daily, we laugh. It gets us through bad news, and bad nights, and some really bad stretches. Sometimes our jokes are off the charts black humor – no one else could possibly understand what we find so funny. He has adapted to my being a complete germ freak, as I try to avoid infection. I have adapted to his need to disappear on a regular basis into the depths of a good old fashioned blow-everything-up boy movie. And his off limits “office/man cave/dressing room”? Oh please, don’t get me started.
We have both had to learn the nuances of the language of myeloma, but we have also learned the nuances of the English language as we play our weekly Scrabble game. I’m SO sure he takes advantage of the days when I’ve had to take too much medication and my brain is foggy to mop the board with me. I KNOW I take advantage of the days when I’m sharp as a tack to challenge his sloppy spelling! Not a day goes by that I don’t feel loved and cherished – even as my hair thins, my idea of fashion is a new shade of gray sweatpants, and, oh my, can I be hard to live with on steroids.
This past spring, my last treatment regimen failed dramatically, and my doctor decided I needed to get myself enrolled in a particular clinical trial in New York as quickly as possible. It would require traveling back and forth to New York City once a month for a few days. We had no time to plan, no time to think. My doctor wanted me there “next week”. Under the circumstances, I was unclear how Paul and I could make this happen either physically or financially. Well, physically the challenge was erased by Paul, and an understanding boss. He let her know that he needed to be gone for three days each month, and there has never been a question that this is priority one. He does all the heavy lifting, gets me into a wheelchair at the airport, sees me through the process without me having to lift a finger.
Lazarex Cancer Foundation was there to help with the rest. My social worker told me to give them a call. When the staff at Lazarex told me what they do, I burst into tears. I couldn’t fathom that anyone understood how hard it was to be very ill; yet need to figure out how to sign on for a clinical trial, with all the financial burdens, travel logistics, record gathering, schedule changing, etc. And then build a foundation around that need! Yet, within a week, Lazarex approved me for help with travel and lodging costs. I was able to enter a clinical trial in another city with about 10 days advance notice, and all the obstacles simply melted away in front of me. I am now almost through with my fifth cycle of the clinical trial drugs. The drugs are holding my myeloma at bay, which is everything I can hope for. The team in New York is great and attentive, my husband, my family, and friends at home are my rocks, and the Lazarex team makes the whole thing financially possible. They have helped give me the gift of time. My future, as always, is an unending question mark. But my present is filled with laughter, hope, and deep gratitude.
November 30, 2012 Update
In October Marty’s cancer stopped responding to the clinical trial treatment. A search for another clinical trial is underway.