Whining v. Crying

Last week was my last week of chemo at the Pediatric Day Hospital (PDH) of MSKCC! I still have one more round of chemo this week at my local hospital. I am exhausted and anxious to be coming to the end of 9 1/2 months of chemo.

When I was first diagnosed last October, we were surprised to learn that although I am 43 years old, I would be treated by the Pediatric Cancer Team in the Pediatric Ward, as they are best equipped and experienced to handle my pediatric cancer, osteosarcoma. I thought that makes sense, sort of, I guess....not feeling entirely certain (about anything).

My husband and my first experience at the PDH was unlike ANY of our many subsequent visits - it was almost deserted, and very quiet. John and I were the last appointment of the day. As it turns out, this is the time of day reserved to deliver troubling news. Troubling news it was - nine rounds of not one, but three types of chemo, with the option (which was later exercised) to add 5 rounds alongside the original nine, of another fourth type of chemo. In addition there would be Limb-Salvage Surgery (where they remove the cancerous bone(s)), or there would be amputation - TBD by surgeon, without one or the other, I would certainly be dead within two years. We were told of the side effects not only to my body, but to my life and my family's life. We were told to expect to be fully debilitated by this treatment, to be on crutches/in a wheelchair for a year, to have to stop working at my job that I loved, and close my company that I worked hard to build.

At the time, I was unsure of almost everything, including how I felt about being in the PDH, being 3-4 times older than my fellow patients. Now, almost 10 months later I am so grateful to have been treated in this brightly painted, colorfully furnished ward that is full of authentically devoted and caring staff. What's more, I feel I have unwittingly "been to the top of the mountain to visit the wise old man" - only to find that he is not old at all. The kids at the PDH that have cancer are so enlightened about what is important in life, they know the difference between whining and crying. There was not a day spent at the PDH where I heard one whine from a child, crying - yes, including me, whining - not once, except for me.

Part of my treatment is not at the PDH, it is with adults. Here is what adults with cancer talk about - cancer. Kids with cancer play games, ride the halls on their IV poles, talk about sports and friends and occasionally - if it comes up, usually by an adult -cancer. I want to be with this group, the sage and delightful kids. Plus, the kid's hall has ukulele-strumming, roller-skate wearing NYC performers wandering the halls, the best BandAids, and an occasional Jake Gyllenhal visit (which I missed, argh!), all of this and and no whining.

At the PDH, there is more than a little crying (thanks Honey for the noise-canceling headphones), real pain and certainly more grief than I care to ever see again in my life. Being in the presence of so many sick children and their parents, I know this much, there are far too few dollars spent on childhood cancer research. There are some childhood cancer fundraising warriors out there, but they are way out-marketed by other worthy causes. We need to do better for these kids, as any parent with a sick or heaven-dwelling child can tell you with one look in their eyes.

The finish line is in sight for me, finally! Once I am done with chemo, there will be post- treatment scans of every possible variety on July 11th, followed by monthly chest CTs, four bone scans and MRIs per year, and lots of PT for my new leg. I will not cry, nor will I whine about these things. I will have gratitude for having been in the PDH, hope the cancer is completely gone, and have faith that it will never return. I will be grateful for having been treated alongside the bravest of souls, by doctors and nurses that are among the best, supported and loved by my husband, daughters (and Andrew), and encouraged by my friends, all of the above -and more- for whom I am eternally and overwhelmingly grateful.