Archive for February, 2012
Julia mentioned Bernie Siegal and his, I think, very true statement about identifying what it is you want to live for. Well I’ve just been reading Dr. Siegal and he said something else that struck me. He said — “The patient who survives is the patient who asks questions.” It says something about our health care system — I just can’t figure out what. Ha! I mean my doc said when I was released — “Be sure and eat. Good nutritious food.” Should I have asked him why? Sounds like a stupid question yes? Except that just now, after spending the entire day feeling poisoned because nothing seemed appealing to me AT ALL I forced myself to eat some “…good nutritious food..” And now I understand the real why. It gives strength and vitality and totally defeats the feeling of being poisoned. But how would you know that if you had never had experienced the cancer, food does that so naturally that we take it for granted but we lose track of that life long understanding when being bombarded by radio active isotopes and chemo therapy, and how would you know to ask if you hadn’t read Dr. Siegal? Hmmmmmmmmmmmm. Asking about everything from here on out.
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,
“Be always drunken.
Nothing else matters:
that is the only question.
If you would not feel
the horrible burden of Time
weighing on your shoulders
and crushing you to the earth,
be drunken continually.
Drunken with what?
With wine, with poetry, or with virtue, as you will.
But be drunken.
And if sometimes,
on the stairs of a palace,
or on the green side of a ditch,
or in the dreary solitude of your own room,
you should awaken
and the drunkenness be half or wholly slipped away from you,
ask of the wind,
or of the wave,
or of the star,
or of the bird,
or of the clock,
of whatever flies,
ask what hour it is;
and the wind,
clock will answer you:
“It is the hour to be drunken!”
― Charles Baudelaire, Paris Spleen
I wanted to do write this first entry with something that sings nearly as beautifully as all the wishes. thoughts.prayers and energies that I have read since this blog began a few nights ago. If anything lays out my life energy in song it is this Baudelaire.
I am home. Wearing clothes instead of Johnny and Jammy pants. No hoses in the arms. The angels of mercy are my home girls, not the nurses. No rap om the nurses. They were professional and competent, warm and attentive, I actually miss them. But it’s great be home. Home is medicine. Like everyone’s out pouring of love and strength in this blog.
I thank you all so much.
My oncologist is aggressive about fighting this disease. Aggressive in a very funny (ha,ha) sort of way. Which is why we have the title “Slap That Rascal”! Mr. Tumor is being slapped five times a week with radiation, 3 times a week with chemo every 3 weeks plus many chapters of Bernie Siegal and Dr. Cornel Wilde on healing through foods and spirit!
Once again I thank you all for your support.
It’s odd but it feels like I am here with you, so powerful is your support that I feel that we are all one in this. So I feel confident in assuring you that I/we are going to Slap That Rascal into remission.
With my love,
We had hoped that Greg/Tate would be discharged today after his chemo and radiation, but it’s going to have to wait until tomorrow. He was getting anti-coagulants (blood thinners for the non-medical folk) to prevent his body from making clots and began to bleed from the site of his port. He didn’t bleed enough to be dangerous, just enough to make a mess. Count on Tate to make a mess!! They think the bleeding started because he was getting aspirin as well as the anti-coagulants and when he coughed it caused enough pressure that it broke through the clot at the incision site. Things were a bit delayed today, but he still got his radiation and chemo for this round finished. As much as he wanted to go home, I think we’re all glad to have him stay in the hospital for one extra day so that we’re sure the bleeding is under control. Tate’s looking forward to going home, hopefully in the morning.
Thank you to everyone for their love and all the positive energy being sent his way. It’s so appreciated.
Just a quick update to let you all know that day 2 of radiation and chemo went smoothly. Tomorrow he’ll do another day of both and then hopefully be home! The only thing that might hold things up a day is that Pulminary wants to do an Endoscope. After that the plan is radiation 5 days a week for five weeks. Several of you have asked about rides. We are going to assume that Tate will drive himself to and from radiation unless he feels to tired. So what we would like to do is set up a calendar where people can sign up to be “on call” if he feels he needs a ride. Others of you haveasked about bringing food (Dena tonight’s dinner was so great- thank you). Once Tate figures out what type of diet he’d like to follow, Hannah will also post a calendar where people can sign up to help with meals based on that diet. Ok I must sleep. We are all looking forward Tate coming home. Tessa asked me tonight if he would still be able to take her to AC Petersons as they had planned. Julia
Well….first big day of chemo and radiation treatments down!! Just figured we would give a quick update.
Today was the first day of chemotherapy and radiation treatments. Uncle Greg went early this morning to get the process started with a “port” which makes having IV’s much easier. When he came back….our good friend the Chaplain came by and gave him his ashes for Ash Wednesday. Then….the Chemo started around 1:00 pm. The chemo takes place in his room….and he felt no nausea at all today. His amazing nurse Robin said that he may feel delayed nausea which would happen 6 hours after the chemo….but I’m sitting here with him now….and he’s feeling good….which is awesome!!
He went for the radiation treatment this afternoon at 3:00 pm. He says the whole thing was a lot of prep….and just a few minutes of treatment. He was only gone from the room for about an hour. This evening….Julia brought him some Aloe Vera gel for the area where he received the radiation as well as a pretty delicious looking salad and piece of catfish from Black Eyed Sally’s. He watched Modern Family for the first time tonight. He wasn’t too impressed. LOL!! It wasn’t the best episode to watch for the first time. And now….we’re back to watching Law and Order again.
All in all….it seems like this first day of treatment went well. He is feeling GOOD!! So that is a wonderful thing. He says Hey to everyone out there reading and checking up on him. Again….he really appreciates all the love and support. He is just really happy to be starting the treatments….and actively fighting this thing.
With lots and lots of love –
Greetings from Tate’s room. Uncle Greg (also affectionately known by me as “Uncle HAM”) has had a good day!! He didn’t get much sleep because he was poked at quite a bit throughout the night….but he was still in great spirits.
The day started at 7:45 am with a Pet Scan. This test will help Doctors have a comprehensive view of all his insides. That went well….and the Pulmonary doctor just told us that we should know more from that tomorrow. Then he took a little nap while pretending not to watch VH1 reality shows with me. LOL!! I was trying to keep the volume low….and I thought I heard him say “Ash….turn these silly women off” but come to find out he said “Ash….turn these silly women up.” Love it!!
He had lots of visitors today. The Hospital Chaplain came back and when she left the room….Uncle Greg and I agreed that she’s pretty cool. He took a walk with Maureen and Hannah, and had 3 delicious cups of his favorite thing. Coffee. Now….of course….he’s watching Law & Order. Of course!! 🙂
Tomorrow is going to be his first day of Radiation and Chemotherapy. He’ll start everything early in the morning….and will go until pretty late….so it’s going to be a long day. Karen will be here bright and early in the morning….and I will be here through the night. Our evening program lineup includes the episode of Smash that I promised him we would watch together (LOL) and Modern Family. I will report back tomorrow on how he is feeling.
Julia said it best….I don’t know that I’ve ever seen anyone who is loved so fiercely. But he also loves very fiercely in return. He tells me continuously that I’m a “sister of mercy” (as only Uncle Greg would say) and has told me that he is happy we’re all here. The strong support that this fierce group of family and friends has will help him fight this thing….and as his Doctor said the other day “we’re going to punish it”. 🙂
With lots and lots of love –
Ash (Uncle Greg’s special nickname for me) 🙂