Just a quick update: this healing stuff is at least one full time job if not several!
Tate is home and started his outpatient radiation yesterday. Thanks to all of you who have signed up for ‘ride duty.’ It is extremely helpful.
I went with him yesterday for the first day so that we could also ask some questions of nurse Karen (yes the nurse working with him is also a nurse named Karen. Not to be confused with the Karen that is also and nurse and Tate’s girlfriend). It was a good session and we got our questions answered but Tate and I both agree that the care seems almost a bit haphazard. There is no one person overseeing his total care ie nutrition, emotional health, side effects etc. Most often we don’t get information unless we ask for it which leaves us wondering, “what information are we not getting because we don’t know enough to ask about it?” This is one of the main reasons we are looking for other possibilities. Tomorrow Tate has an appointment at Hartford Hospital and were are getting his records sent to NIH, Yale and the American Cancer Center. We have connections at the former two and the third has been been very highly recommended by two current patients.
Thanks again to all of you who have brought food by. It has been a huge help. We are still researching what the best diet is for Tate during treatment but his taste buds are already being affected by the chemo and he is saying what feels really good to him now are fresh veggies and things like lemonade.
I want to avoid speaking for him since he can write and tell you all how he is feeling. I would however like to share one story that he and I were both a part of. The night before he came home Tessa (my 6 1/2 year old daughter for those of you who don’t know her) was very nervous. She began to cry and said she was afraid that Tate would not be the same. That he would be too sick and that she would not be able to hug him. I tried to explain that he is still the same person and that so far what he was feeling mostly was tired. We talked about how his voice is still affected by the tumor but that hopefully that will change soon as the tumor shrinks. She said that he had promised to take her to AC Petersons (a local ice-cream shop) and that that was “supposed to be their special thing.” I said I had a feeling that Tate would still want to go with her.
Tate came home on Saturday and on Sunday, he and Karen took Tessa to AC Petersons. Apparently, while she was eating her cotton candy ice-cream, she put her head on his shoulder and said smiling, “I have my Tate back.” Tate started to tear up when he told me this and I am tearing up just writing about it. Tate said it reminded him of what Dr. Bernie Siegel says; That went battling a disease like cancer, it is essential to identify very specific things that you want to live for. I can definitely say that of the many, many reasons I want Tate to live beyond cancer, at the top of the list is so that he can continue to be an essential part of both my children’s lives.
Carry it on,