On the Eve of Pink

I feel like a pin cushion. After my Tuesday appointment, I was suddenly scheduled for all sorts of consults and tests: urinalysis, arterial blood gases (which was especially fun since they needed an artery and not a vein and that resulted in a few extra pokes), ECG, Pulmonary Function, and the usual blood work. On my birthday Wednesday, I will spend the entire day at the University of Chicago medical center to go over all the results of these things this past week and hopefully will hear the words "strong enough to handle surgery" and "Yes, I can take these out." My PFT showed that my rate of diffusion was in the low average range but when they opened my bronchioles with albuterol, the rate of diffusion improved. Don't know how the Dr. will interpret that but as I spent half an hour coughing up mucus, my guess is my seasonal allergies are partially to blame. The only other thing that stuck out was that my blood doesn't carry as much oxygen as a person my age should. It was "good" but low average for my age. I wonder if that is why I faint in areas of low oxygen? I remember a trip to Pike's Peak as a 12 year old. The thin air didn't bother the rest of the family. I found myself on the ground after a slight swoon and I had a HUGE cramp in my side. Living above the tree line and mountain climbing are off my bucket list!

It is the end of September and we are on the eve of "pink." Yes, October is breast cancer awareness month. We celebrate the success in this area. Breast cancer went from one of the least talked about, least researched cancers to one of the most curable. We have made great strides in this area but ladies, though we celebrate your success with you, we mourn that so many other cancers are left in the dust and we are mounting losses by the day to cancers with no treatment options, inferior treatment options, or a lack of effective treatment options developed solely for that tumor type. July is the unofficial "Sarcoma Awareness Month." The events surrounding this area were little discussed, unadvertised and unless you know of someone with this cancer, you were probably unaware that events for awareness existed. Curing this cancer is no less important. The lives of these patients are no less valuable and we need everyone's help to bring awareness and funding and a cure to them. As a woman, I threw my money into curing breast cancer. I threw my money into curing Ovarian cancer. I threw my money into curing cervical cancer. How ironic that after being aware of all these other cancers, that I completely missed the signs associated with having a Sarcoma. For 5 years, I walked around with a little lump that never blipped my radar as being something to be concerned about and how fortunate for me that it was a slow growing, lower grade cancer or I would be among the 50% destined to die after a sarcoma diagnosis. How absolutely fortunate that I am stable with stage 4 sarcoma after 4 years. I can dare look towards some sort of future. For some of us diagnosed with Sarcoma every year, that is not as possible. Rhabdomyosarcoma, a cancer that occurs mainly in children, has a 20% survival rate over 5 years. That is for ANY stage. If the cancer recurs after the first line treatment ends, the child has a 5% chance of surviving. 5%!! Can you imagine being a parent of a child with Rhabdo and being told that this is the chance your child will survive? Malignant Peripheral Nerve Sheath tumor, the tumor type I have, has a 50% survival rate among all stages. If the cancer recurs, the odds slip to about 24%. 1 in 4 will survive. Over the past 4 years, I have met 5 people with MPNST. 3 died. 3 children, a 9 year old, a 14 year old and a 19 year old: Kelsie, Derrick, and Tyler. Milly and I continue to live with stage 4 disease. Melissa is NED, the only one of us who had caught it small enough, early enough and low grade enough. Whereas breast cancer is most often operable, Sarcomas, more often than we like to see, are inoperable. Growing deep within the soft tissue, they weave in and out of arteries and veins making total resection an impossibility. With chemo as the only treatment option, imagine being told with your inoperable tumor that there has been no research and therefore no chemo that has been proven effective on your inoperable tumor. If they occur in limbs, amputation is often the course of treatment. Children with Sarcoma lose arms and legs sometimes before they even learned to use them. Rarely do we see a breast cancer amputee and whereas breast reconstruction surgery is paid for by insurance now, a prosthesis that will allow the children and adults complete mobility are often denied by insurance and we deal with debilitating, unsightly disfigurements that are not so easy to hide. One gentleman at the U of C, had a sarcoma in his face. One little boy I know of, had a sarcoma on the salivary glands. He lost his jaw and his teeth and his family fought long and hard for reconstructive surgery. So while we focus on pink this month and celebrate the successes, please look at the body count that has mounted and mounted and mounted. With your pink, wear yellow and gold in honor and memory of the children and adults lost to rarer, underfunded, little known about cancers that need as many voices as we can get. Someone in my family said "I can't look at sick children." That right there is part of the problem. We don't like to look at ugliness. We don't like to see the young people suffer but we cannot sweep this under the rug and pretend it doesn't exist and it's not happening. Sarcomas are cancers of the young, the forgotten groups: the children, the teens, the young adults, and those in their 30's, often with young children, are most affected.
On the eve of pink, remember yellow and gold.
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