She impatiently lies in a hospital bed. The room is painted a vague shade of beige – a color selected to imitate neutral. The problem is, it appears dirty. Like the walls need a good scrubbing. The remote control is missing; the television is only accessible manually. There is no volume. She looks around and suddenly realizes that the trash receptacle is full; she is germ phobic.

Diagnosed with a rare form of cancer—a malignant nerve sheath tumor, the twenty-something woman is currently confined to her hospital room personally adorned with a heart monitor and IV. She has a pulmonary embolism in her right lower lung. “Not uncommon,” the doctors say as a matter of fact. Sorry, but I don’t know any other person in the emergency room of any hospital being diagnosed with an embolism today, Yet alone, a 29 year old who up until a couple of months ago was leading a normal healthy life. They say that it has nothing to do with the chemotherapy,

Hope Fund for Sarcoma Research Co-Founder Marianne Bouldin
but I find that hard to believe.

Of course, I am the mother, the advocate, the note taker, the ears and the driver. It is my job to be: understanding, skeptical, supportive, humble, assertive, cheerful, I dare not show too much emotion lest I influence my daughter’s state of mind—I have to remember that she is one with the diagnosis of cancer—not I. As a mother, I want to take it on. Claim the disease as my own—I’ll take it, leave her alone. But that is not how this works—the disease is random. Cancer chooses its victims indiscriminately—it doesn’t look at your insurance status, it doesn’t care if you are married or single, childless or mother of a family of four.

At the end of April, my daughter told me that something was bothering her. It began with a lump, as it often does. A woman with a lump is not uncommon. Most lumps are benign and can be related to the reproductive cycle. I shrugged when she told me, encouraging her to contact her doctor, but seriously not giving it much credence. Ten days later, I began to pay attention. The lump was hard and it hurt. Now, if you listen to wives’ tales, cancer doesn’t hurt. Wrong! As my daughter worked her way through the maze of primary care physicians, radiologists, and finally surgical oncologists, I was with her. At every turn, we expected a favorable outcome; at every turn, we were disappointed.

Without throwing a pity party, my daughter’s cancer is an unwelcome interruption in her life—and heck, why not say it. Mine too. She is on indefinite disability from her career and her beloved dog remains in Maryland with her boyfriend. She has been in the hospital more times in the last month than most individuals will ever be. And she underwent the first of six rounds of chemotherapy last week. Eight hours a day for three consecutive days, I watched as big bad chemo drugs—a cocktail especially designed to kill the cancer cells, trickled drop by drop slowly down into my child’s body through a surgically implanted port. Her fair skin was rendered bright red from the steroids—the dizziness and nausea left her weak. On the last day, she could barely walk to the car a few steps away. More than once, she spoke profoundly, “this sucks.”

I can’t tell you what the outcome will be. I do know that tonight my daughter is feeling more like herself. She is home from the hospital and is cleaning her room, replying to the many emails sent from friends around the country. Later tonight, she will give herself a subcutaneous shot to thin her blood. Tomorrow, she will begin a seven-day regimen of antibiotics to keep her white blood cell count up. I know right now that my daughter, my husband and I are together in our comfortable home and we love one another. We faithfully believe that this is merely a blip in our lives and while it is certainly an inconvenience and definitely not what we had planned for the summer of 2005, it is what it is. And if new age wisdom prevails, we will eventually learn the life lesson that this formidable experience is offering.

Marianne Bouldiin
July 18, 2005

January 4, 2008 – Bouldin’s daughter is cancer-free today and has resumed a “30 something year-old” life in Washington D.C. The family created a charitable foundation, The Hope Fund for Sarcoma Research, (www.NFCR.org/HopeFund) in order to fund “discovery” research projects which will hopefully lead to more effective treatments and a cure for soft tissue sarcomas. In their quest for research, it was revealed that the sparse number of tissue samples was a huge problem for scientific researchers. Today, Bouldin and her colleagues develop international partnerships with scientists in the United States, Asia and Europe in order to overcome the issues faced by this rare form of cancer.