As I work on trying to promote to upcoming Sarcoma fundraiser: a Lancaster Barnstormers baseball game on 7/16 and a bike/walk/run in East Petersburg, Pa on 9/24, I am trying to get the information out to all the locals who are affected on a daily basis by Sarcoma cancers. Of course, my history leads me to check in often with the Angiosarcoma Cancer group right here on twitter. Everyday I read the stories posted there, and realize how many more lives are being destroyed by this cancer. Today I looked at it a bit differently after reading some articles on Corrie Painter, one of the ladies helping to lead this great group, along with Lauren Skop Ryan (who happens to be throwing out our first pitch at the Barnstormers game!). I realize that she’s NOT ALONE.
This is extremely important. Most better known cancers, such as adenocarcinoma of the breast, lung cancer, even prostate & colon cancers which have become more popularly known, have large and frequent support groups. If you hook into your local American Cancer Society, as a cancer patient you can usually find several people who are journeying these cancer battles at the same time and location.
With Angiosarcoma, it’s just not like that, or at least, it wasn’t.
When Kevin was diagnosed in August 2008, I had never heard of the word Angiosarcoma. Most of you haven’t either, except for some of my previous mentions. One have may as well called Google ‘useless’, for the information I found after Kevin’s diagnosis was on Angiosarcoma tumors found in dogs. DOGS. Ironically enough, a friend’s dog would die from what they thought was an Angiosarcoma tumor just 2 years after Kevin did, but that’s another story. Anything besides information on this cancer found in dogs was bleak. Very bleak. You’d read the statistics basically reading your obituary.
Support system? None. So little in fact, that once we left the comfort of Johns Hopkins hospital, and our expert Sarcoma doctor, Dr. Katherine Thornton, we would return home to Lancaster and Lancaster General Hospital to find that none of our local doctors had a clue WTF was with Kevin’s case. They had HEARD of Angiosarcoma, but dealing with it head on? Not so much. Tie into that his unique feeding tube (which I had to show the ER doctors on more than 2 occasions how to properly use) or his esophagectomy (a procedure normally never done on a permanent basis as was Kevin’s case, usually only done for temporary means during a removal of the esophagus for esophagael cancer, resection and repair surgery with the colon,yet another story) and we were a case for no one but ourselves. Unique.
Unique isn’t good when it comes to cancer. Rare isn’t either.
Our local American Cancer society had no Sarcoma support groups, in fact, I couldn’t find any meet-in-person support groups. I tied in with a Sarcoma non-profit, the Liddy Shriver Sarcoma Initiative where I felt a little less alone. During our time at Hopkins, I met another family. Her fiance had also just been diagnosed with Angiosarcoma. Neither of us could believe the other existed in the same hospital, it was such a rare occurrence. Their prognosis was even less inviting. There would be no treatment, just palliative care. They were going to go home, get married, and wait it out until the end. From what I understood, this was a common occurrence in the Angiosarcoma world. Found too late, misdiagnosis, diagnosis,still too late.
Then I met more Angiosarcoma patients. One during Kevin’s treatments, an amazing girl named Jenn in NY. She was trying EVERYTHING that might work to kick the cancer. She was never free of it, but in and out of thick stages of the disease. Homeopathic meds, traditional meds, on and off. She was battling, and had been for a few years. She would talk to me on the phone as I waited in the hospital at Lancaster General, waiting for nothing it seemed. She gave me hope. We waited – For Kevin to stop bleeding internally, for our oncologist at Johns Hopkins to call with all the answers and a transfer, for something other than waiting to happen.
We got the transfer to Hopkins. We got the answers too. Chemo would do more harm than good at this point. It had “worked” to reduce the size of the tumor, but in turn had opened up vessels in his body leaving him with massive internal bleeding – this was the ‘more harm than good’ part. It had spread in new areas, figured out how to grow around the parts that the chemo had killed. In addition, he had developed a blood clot, unfound until we arrived at Hopkins (after having spent several weeks at Lancaster General I might add). No blood thinners for the clot otherwise he would bleed out. Couldn’t fix that either. There was nothing to do. But wait. Kevin remained hopeful, even at the end.
He died just 2.5 days after arriving back at our comfort zone, Hopkins. I haven’t returned to the city of Baltimore since, but again, that’s a different story.
Then I read in the local paper about a man, IN LANCASTER, who had Angiosarcoma as well. What were the odds? He had started a non profit assisting families who had been hit with bad news. But then he died.
Then Jenn died. The same week as my grandfather. 6 months after Kevin. Devastation.
Through various types of stalking, I was determined to find Angiosarcoma people that LIVED. I found Tracey. It took me a little while to get in touch with her, but once I finally did, we became internet friends – She is one woman, living with Angiosarcoma, who is seemingly kicking Angiosarcoma’s ass. I’m fearful to ever say the word remission in connection with Angiosarcoma, but hey, she’s doing GREAT. And has been for years, even with a misdiagnosis and late treatments. She’s rockin’ it.
And then a group started here on Facebook. I came across another Angiosarcoma survivor, and was linked with dozens of others. Now there seems to be nearly 100 people connected online, through this disease. While I’m devastated by what seems to be a string of people who have been taken by this disease in the past few months, one who happened to live in Lancaster and only was diagnosed weeks before his death, I’m still encouraged. Why? Because now people have heard about it. When I google Angiosarcoma (which I encourage you to do now) you’ll find roughly 185,000 results. If I remember correctly, there were only about 10,000 mentions of this disease when I googled it 3 years ago. Big change.
Despite the fact that people are still dying from this cancer, I know that people are living longer with this cancer now. LIVING LONGER WITH THE CANCER. Trust me, this is GOOD in the Angiosarcoma world. Anytime that I can tie ‘life’ and ‘angiosarcoma’ together in a sentence, means good things ahead. Two amazing women, Lauren & Corrie, can be applauded for all of these efforts. They’ve bonded people together, and even if the research they are helping to fund takes a while to have positive results (all research does), when you bond survivors together (oh yes, I DID just type survivor) you build strength. You build community. You make one less person feel so alone on this ridiculous cancer journey.
In the Angiosarcoma world, there may only be about 300 people at any one time living with this disease – about 100 of them are connected on Facebook because of these women. In my heart, I know those 100 people have a better shot at survival simply by having a community of support.
Does this make you want to help? It should. Consider donating, supporting, showing up for a cause. http://www.angiosarcomaawareness.org/ Help get those other 200 people joined together, and connect the rest of the world to this disease, so if they are ever diagnosed, they have heard the word, they can figure out where to go. They’ll have the support that we did not.