First of all,
THIS is my doctor.
Dr. Bradford Hoppe (pronounced "hoppy").
The first thing I asked him when he walked into the room was, "Are you really a doctor?"
He really is a doctor. (He doesn't just play one on TV. Ha ha.)
He is not only drop-dead (...) gorgeous, he also has a very nice (okay, sexy) voice.
The universe is hilarious.
If I have to put my life into someone's hands, they might as well be his.
(Ah..hem.)
Anyway,,, Dr. Hoppe is the "Principal Investigator" of the research study I am going to be a part of : " UFPTI 0806-HL01: Improving the therapeutic ratio by using Proton Beam Radiation Therapy for patients with stage I-IIIBX (bulky/non-bulky) Hodgkin lymphoma involving the mediastinum following standard chemotherapy."
There are still quite a few more tests to be done, but assuming I am still in remission and my body (heart, lungs, etc.) is in good shape, I will begin a series of approximately 20 treatments in about two and 1/2 weeks.
The purpose of this study sounds very ideal: "The purpose of this study is to reduce your risk of radiation related side effects (as listed in section 9) and complications by treating you with the type of radiation (protons or photons) that exposes less of your normal organs to low dose radiation."
The scientific part of me is kind of, I hesitate to say this, because it is not exactly the right word for the situation, "excited," to be part of something new and experimental. My "contract" admits that I "may or may not personally benefit from taking part in this study," but says that "the information obtained from this study may help improve the treatment of Hodgkin lymphoma in the future."
Since my insurance company wouldn't cover the proton therapy and Dr. Hoppe et.al. are intestested in using me for research, the costs of my treatment will be covered by UFPTI. Considering the original and remaining size of my tumor, radiation is the recommended next step. Proton therapy seems like the best option because there are less side effects associated with it. Also, there is just so much synchronicity involved, including: how I learned of the institute from a good friend of mine who designed UFPTI's logo, the fact that there are only five places to receive proton therapy in the country and one of them happens to be an hour away from where I live, the fact that Dr. Hoppe has just started w0rking there recently and happens to be studying the kind of cancer I have, etc., etc. (There is also a beautiful baby grand piano in the waiting room! The place is fancy fancy.)
This is getting quite long! But I want to share a few things about the "Planning CT." First of all, the process took a long time. I was lying in the same position for a few hours I think. There were two technicians who helped me and they were both young and very nice. There were a number of people who popped in and who were in another room behind a glass window, including a physicist. There were four or five different "simulations." The first thing they did though, was get me situated in this sort of "bean bag" body cushion type thing. They "mold" it to a person's body by using a sort of vaccum to suck out all the air, and the "beans" solidfy and stay in place. It sounds crazy, spacy, and high tech, and it was. Then they showed me how to use this breathing apparatus, which was used on two of the simulations. Another strange thing was being "shrink-wrapped." They put this thin, plasticy, syran-wrap, body-bag, type thing over my head (it has a hole for the persons head to be free) then sort of taped it down, then took out all the air until it was super tight around my body. It felt very strange. The purpose of it is minimize breathing. On only one of the tests did they use my power port- they flushed the iodine stuff/contrast in on that simulation. Another thing they did was to line me up with little red lasers and mark six crosses on my upper body. (Each time I come in for treatment I will be lined up the same exact way.) These crosses have clear stickers over them and I they are intended to stay there. If they start coming off, I will have to go in and have them fixed.
So what is the deal with the simulations? I will explain the best of my ability. They took about 4 or 5 CT scans. Each time they had me in a different situation, i.e., breathing through the breathing apparatus, shrink wrapped, flushed with contrast, etc. They do these simulations to see which situation will work best for the actual treatment. For the actual treatment, I will only be in one of these situations. Does that make sense?
One strange/funny thing is that at the end of it all, when I was changing, I noticed a tiny little lizard crawl under the door into the room! It was funny to see a little creature like that all the way in that building. Dr. Hoppe also noticed it in the hallway when he came back to check on me.
Another funny thing is that Dad and I were in the parking lot getting ready to leave when I realized that I my port was still hooked up! Meaning, there was still a needle in my chest! I had totally forgotten about it and my nurse had been off doing other things when I finished with the simulations. So I went back in and got that taken of, need(le)less to say. (Ha ha. I'm so funny tonight.)
Dad and I ate dinner at Bistro AIX, a restaraunt in San Marco I went to a couple times when I lived in Riverside. It is fancy and the food is quite delicious. I had a salad with very green greens and the best tomato soup I've ever tasted. I also had a couple of glasses of a Rose' wine. Yum.
It was pouring, thundering, and lightening while we were there! The lights flickered a couple of times.
Then dad drove us home to St. Augustine.
So.....that was the part of the day that I really didn't sufficiently cover yesterday as I was too absorbed in my gloomy mood. And....it WAS a long day. You can tell by reading this blog, we did a lot. Yes we did.
(Ah..hem.)
Anyway,,, Dr. Hoppe is the "Principal Investigator" of the research study I am going to be a part of : " UFPTI 0806-HL01: Improving the therapeutic ratio by using Proton Beam Radiation Therapy for patients with stage I-IIIBX (bulky/non-bulky) Hodgkin lymphoma involving the mediastinum following standard chemotherapy."
There are still quite a few more tests to be done, but assuming I am still in remission and my body (heart, lungs, etc.) is in good shape, I will begin a series of approximately 20 treatments in about two and 1/2 weeks.
The purpose of this study sounds very ideal: "The purpose of this study is to reduce your risk of radiation related side effects (as listed in section 9) and complications by treating you with the type of radiation (protons or photons) that exposes less of your normal organs to low dose radiation."
The scientific part of me is kind of, I hesitate to say this, because it is not exactly the right word for the situation, "excited," to be part of something new and experimental. My "contract" admits that I "may or may not personally benefit from taking part in this study," but says that "the information obtained from this study may help improve the treatment of Hodgkin lymphoma in the future."
Since my insurance company wouldn't cover the proton therapy and Dr. Hoppe et.al. are intestested in using me for research, the costs of my treatment will be covered by UFPTI. Considering the original and remaining size of my tumor, radiation is the recommended next step. Proton therapy seems like the best option because there are less side effects associated with it. Also, there is just so much synchronicity involved, including: how I learned of the institute from a good friend of mine who designed UFPTI's logo, the fact that there are only five places to receive proton therapy in the country and one of them happens to be an hour away from where I live, the fact that Dr. Hoppe has just started w0rking there recently and happens to be studying the kind of cancer I have, etc., etc. (There is also a beautiful baby grand piano in the waiting room! The place is fancy fancy.)
This is getting quite long! But I want to share a few things about the "Planning CT." First of all, the process took a long time. I was lying in the same position for a few hours I think. There were two technicians who helped me and they were both young and very nice. There were a number of people who popped in and who were in another room behind a glass window, including a physicist. There were four or five different "simulations." The first thing they did though, was get me situated in this sort of "bean bag" body cushion type thing. They "mold" it to a person's body by using a sort of vaccum to suck out all the air, and the "beans" solidfy and stay in place. It sounds crazy, spacy, and high tech, and it was. Then they showed me how to use this breathing apparatus, which was used on two of the simulations. Another strange thing was being "shrink-wrapped." They put this thin, plasticy, syran-wrap, body-bag, type thing over my head (it has a hole for the persons head to be free) then sort of taped it down, then took out all the air until it was super tight around my body. It felt very strange. The purpose of it is minimize breathing. On only one of the tests did they use my power port- they flushed the iodine stuff/contrast in on that simulation. Another thing they did was to line me up with little red lasers and mark six crosses on my upper body. (Each time I come in for treatment I will be lined up the same exact way.) These crosses have clear stickers over them and I they are intended to stay there. If they start coming off, I will have to go in and have them fixed.
So what is the deal with the simulations? I will explain the best of my ability. They took about 4 or 5 CT scans. Each time they had me in a different situation, i.e., breathing through the breathing apparatus, shrink wrapped, flushed with contrast, etc. They do these simulations to see which situation will work best for the actual treatment. For the actual treatment, I will only be in one of these situations. Does that make sense?
One strange/funny thing is that at the end of it all, when I was changing, I noticed a tiny little lizard crawl under the door into the room! It was funny to see a little creature like that all the way in that building. Dr. Hoppe also noticed it in the hallway when he came back to check on me.
Another funny thing is that Dad and I were in the parking lot getting ready to leave when I realized that I my port was still hooked up! Meaning, there was still a needle in my chest! I had totally forgotten about it and my nurse had been off doing other things when I finished with the simulations. So I went back in and got that taken of, need(le)less to say. (Ha ha. I'm so funny tonight.)
Dad and I ate dinner at Bistro AIX, a restaraunt in San Marco I went to a couple times when I lived in Riverside. It is fancy and the food is quite delicious. I had a salad with very green greens and the best tomato soup I've ever tasted. I also had a couple of glasses of a Rose' wine. Yum.
Then dad drove us home to St. Augustine.
So.....that was the part of the day that I really didn't sufficiently cover yesterday as I was too absorbed in my gloomy mood. And....it WAS a long day. You can tell by reading this blog, we did a lot. Yes we did.