The first thing you do when you get a cancer diagnosis is consult the Internet. THIS IS A MISTAKE. The World Wide Web, for all it's usefulness, is full of frightening misconceptions as it pertains to cancer, treatment regimens, and especially survival rates. The most prudent thing to do is have a notebook with you for every consultation, and ask questions, lots of them. Make notes on everything. Be prepared, but don't put a lot of stock in the answers you get on-line. Trust your doctors, but ASK QUESTIONS. None of them are dumb. If your feeling it, say it.
We literally got home from the match and went right to the computer. What we found were scary accounts of what Gastric Cancer would mean, none of it we were prepared to see. Partial or total removal of the stomach? How does one survive without a STOMACH? Use of a feeding tube? What would this all mean? While I was emotional on the surface, Ellen Toy went all warrior.
We decided to have the surgery done at Allegheny General Hospital, and then receive treatments at the Cancer Center at Allegheny Valley Hospital in Natrona Heights. Dr. Donald Atkinson would be Ellen's surgeon. He has a great reputation in Pittsburgh, and was described by one of the prep nurses as an "aggressive resector" which was reassuring and frightening at the same time. On November 6th, 2010 Ellen had surgery to remove the bottom 2/3's of her stomach. The operation took about five hours, and the waiting was the worst part. It was about 1:30 in the afternoon when we finally got to see Dr. Atkinson. He was confident by appearance that he had resected all of the cancerous area, and that there didn't appear to be lymph node activity. The nodes would go to the lab for testing, and that would take a few days.
Ellen was soon awake, and doing pretty well considering the 10" incision from her sternum to her belly button. She received excellent care at AGH, except for the nurse who flipped her into bed a day after the surgery. I'm not sure I have ever seen her angrier than that day! After a few days the tests came back positive for lymph node involvement. Ellen would have to undergo chemo and radiation therapy after all. This was disappointing news to say the least, because it meant the cancer had pierced the stomach wall and was present in the abdomen.
We met with Oncologists and Radiation doctors while at AGH, and decided to have treatments at Allegheny Valley instead for driving through winter weather into Pittsburgh. We were assured that the regimen would be the same. Her Oncologist would be Dr. Gene Findlay and her Radiation Therapist would be Dr. Arshoon. Both men are highly thought of in the area, and it is comforting to know the people you place so much trust in are good at what they do. They are both terrific to deal with, easy to talk to, and we never felt hurried, or as if we had stupid questions. This is so important!!!
It was decided that Ellen would start with the North American approach, which consisted of 12 chemotherapy treatments, once a week, followed by radiation to the affected area, and then a combination of radiation and chemo. It was an aggressive approach. These doctors felt as if with a previously healthy patient, they were going for the kill. Six months of this and cancer would be in the rear view mirror!
After a period of time to heal up after surgery treatments began. We had read all of the material available on side effects and issues one might have during treatment. Ellen was so sure that she would not get sick while in treatment. She has a real phobia about throwing up. She was never the parent who ran to the kids when they got sick. I had to do it, and now she was facing medications that were KNOWN for causing it. She was so determined. It just wasn't happening to her!
Meanwhile Jaime had gone to work. She felt obligated to pay back for all of the community members who had rallied for her during her two battles with ALL leukemia. She almost single handedly organized two fundraisers at Pizza Hut and Dairy Queen, relying heavily on the volleyball program for help. It is always so inspiring to see so many mobilized to help when it is your family in distress. Having Jaime fronting these efforts just made it all the better.
It was pretty obvious from the start that Ellen would not be available for the coming Jr. High season, so Jaime also took the helm of the program, tapping a familiar face to help her. Jodie was not only Jaime's twin sister, but her teammate in Volleyball and Basketball at Kiski, and again in basketball at St. Vincent. Jodie also taught in the district so it was an easy call for her to join the staff. With Dan along to help, Kiski volleyball was in good hands. It was partway through that Jr High season that open gyms began for the High School kids. Interest was at an all time high, so even with Ellen on the sidelines, many of the players made the extra effort to get to these sessions. Jaime had been doing the Tony Horton P90X at home for the second time, and integrated the movements into many of the conditioning drills the players did. She was demonstrating one of the more difficult moves when she noticed some bruising on her legs. After finishing up practice, she consulted her fiance Mark, and decided to get it looked at.
The Leechburg teachers led by Ellen's niece Niva Tola planned a beautiful fundraiser at Lingrow Farm in Gilpin Twp. It was a day before this event when I fielded a call from my brother Don. Don was a Phys Ed instructor at the intermediate school where Jaime also taught. Everybody had been periodically checking in with me, concerned about Ellen's status, so I calmly answered all of Don's questions. Then he said, "Have you heard about Jaime..."
There was a sad way that he said those words that tipped me off.
I really became physically ill, and I couldn't speak...
The words he said hurt.
Jaime's Leukemia had come back.
The next night at the fundraiser I had planned to give a speech, thanking everyone involved for their efforts. I really didn't feel as thankful after hearing this news. Jaime had been such a source of encouragement and now she was being ask to go through this again. How can I feel thankful? With everything that was happening around us? Not since our baby Maggie passed away had I felt this betrayed and my faith was shaken.
Not surprisingly, it was Jaime who set me straight.
She told me how important it was that I give my speech, that so many were here, waiting to hear what i had to say. It took everything I could muster just getting started. The speech was about angels and how they appear when you need them most. They do too...