65 and going strong!
It was fifteen years ago when I was diagnosed with a rare cancer, Leiomyo sarcoma, in the groin. I had surgery and radiation and than God that worked. It was difficult living with that cloud over my head and my children being only 14 and 16 at the time. But we all survived and moved on to the next chapter of our lives. The girls now adults and settling down with their own families and my husband and I looking forward to real retirement. My prayers were answered for beating this and being able to finish raising my girls.
Fast forward eleven years, during one of my follow up appointments with my oncologist, she feels a slight swelling on the left side of my neck. It's not visible to the human eye, not even doctors could "see" it, but she felt it should be checked and sent me for tests. Sure enough, the ultrasound showed a mass, the CT scan confirmed it and then there was an MRI. You can't have too many tests. What it was at this point no one could tell me, but I was referred to a very sweet surgeon who wanted it checked further and sent me for a needle biopsy. Those results showed a benign growth that I was told could have been growing for 20 years very slowly. The biopsy showed it was a schwannoma tumor, another very rare condition in a rare location, in the vagus nerve (which controls speech and swallowing) and is also very close to the carotid artery and other vital structures. My surgeon said we should wait and watch before considering surgery. For four years we have been waiting and watching. When I would bring up surgery, he would just say "let's sit tight."
This year I saw my surgeon for our regular appointment. He examined the MRI results and as usual there was a small amount of growth, but over the four years the tumor was now clearly visible to everyone. He suddenly suggested I should see a radiation doctor. I was a little taken aback because he seemed against radiation in our previous conversations. I protested. I had a daughter due to give birth and another daughter's wedding to plan. I didn't have time for radiation and any side effects right now. I asked if it could wait until after the wedding without losing the option for radiation and being stuck with surgery. He said it would be fine if I waited. Then I saw my oncologist a couple of months later and told her what the surgeon had said. She also was against radiation, but said she would speak with him and get back to me after I said he mentioned it could affect my swallowing.
Next thing you know I have an appointment with a radiation doctor. I look up the doctor online to see what other patients think of her. I am very impressed. She is renown in her field. She is chief of the radiation department at MSKCC. She has been working with Proton Radiation Therapy for years and it's been curing some cancers. I watched a video where she explains how it works. The beams are pencil point thin, they stop before exiting the tumor, it has less side effects than regular radiation and less harm to healthy cells. But this is not cancer, so I wonder if I will qualify.
At our appointment, Dr. Nancy Lee meets with me. She is so nice and takes the time to explain everything to me. She says it will be "easy peasy" to get this tumor to stop growing with the treatments. She has found it to be 100 per cent successful in stopping growth, but probably won't shrink it. In any case it would put off any surgery indefinitely. Her only concern was getting me approved financially because most insurances will not pay for this new radiation. I tell her I will be on Medicare next month and have supplemental insurance. She is very happy to hear that. Medicare is one of the few insurances to cover this therapy. And, up until now the only place to go for Proton Radiation Therapy has been to New Jersey. Just so happens, a brand new state of the art Proton Center opened in New York City at this exact same time. It's like all the stars were aligned to make this happen. Dr Lee. said she wanted to commend my surgeon for recommending this therapy rather than surgery. Many surgeons only refer inoperable patients. I realize that maybe he had been "stalling" these four years because he knew Dr. Lee and that the Proton Center would be opening soon and I would benefit from it? I really owe this doctor a big debt of gratitude.
I went for my first appointment yesterday at the New York Proton Center. They treated me like a VIP. I had to have a fitted mask made to hold my head perfectly still during treatments. Then they did a CT scan and an MRI with the mask on. This is going to be used to map out where the proton beams will go during treatments. I'm glad I decided not to put it off. No one really knows if waiting might have taken away this option. I will be going for 30 treatments, Monday through Friday, which will extend into early February.
The timing isn't as convenient as it could be. Traveling in the winter months can be an ordeal. Trying to plan a wedding between treatments might be a bit of a challenge. Having free time to babysit will depend on my appointments. My appointments will begin the day after Christmas, so I will have time to do my traditional decorating and wrapping and cooking without any added stress. It may be a bit of a challenge, but it's doable. I have been blessed with fantastic doctors who have been very caring and conscientious all these years. Medical science is making things possible that were never possible before. Christmas time is really a season of miracles.
I want to wish everyone a very Merry Christmas and Happy New Year. I hope you all get your prayers answered and your own miracles are granted.
