Paul dropped me off early and then dropped the kids off and then he went to work. I walked into a fabulous place that looked like a nice hotel and spa and I was unsure if I was in the right place! There was a coffee bar, craft room, puzzle tables, a mini fridge, patio and more. The receptionist took my picture and made a badge for me so that only I can go into the rooms that are for my treatment and so that they can keep track of everything. I met with some people to sign a bunch of papers and then I met with my radiation oncologist, Dr. Rockhill again. I was able to ask quite a few more questions and I feel a little more clued in to the radiation process.
I'm going to be receiving Proton radiation which is different than photon/electron radiation that most people receive. Proton radiation has primarily been used in children over the past few years because it doesn't have as much residual damage to surrounding tissue. Doctors had to fight to get proton therapy used for adults with the argument that no one really needs or benefits from surrounding tissues getting damaged. Protons are heavier than electrons and therefore can be controlled more effectively. With protons the dose can be higher because the treatment can be more specific to a very certain spot. With photon radiation the photons are lighter and travel more easily, thus affecting more of the surrounding tissue. Two months ago the most I new about protons and electrons was the minimal science I had in high school Electrons were the ones on the outside of the diagram on the test!
In any case, I'll go Monday-Friday for 6 weeks to receive this high level dose of protons directed at the exact spot where my brain tumor was resected. I knew that I would have to wear a mask/helmet to be sure that my face was in the exact same position for the treatment each time.
I was directed to a room where two technicians were working on preparing the medical materials to make my mask. It was sort of like screens from a window that were put in a hot water bath and molded around my face. That part really didn't bother me at all, but because of the location of my tumor the doctor wanted me to lie on my stomach and so I would need a front and back mask. They completed this process but once I was lying on my stomach with both the front and back masks on, they clamped it all together and I started to panic. I couldn't lift my head, open my mouth, turn my head and I felt really trapped. My eyes had to stay closed so I couldn't see. I kept taking deep breaths through my nose, but it wasn't enough and I couldn't proceed with the process. I tried 4 or 5 times, but I just couldn't do it. They called in the doctor and he helped to calm me down and changed the protocol for me so that I could just have the mask on my front and be sitting up, able to see in front of me. I felt a lot calmer and able to deal with it. The next option was to take some calming medicine to get met through it. I did fine with the mask on the front and was able to complete the CT scan.
The room was complete with many different sets of lasers in the ceiling that had to line up with different parts of my head and body. The technicians drew on my face to make sure that the lasers were lined up accurately.
After I finished with my mask, my CT scan, and my meeting with the doctor, I met with my nurse. She will be with me at every treatment and I can call her anytime 24 hours a day.
The next meeting was with the financial department to discuss the payment for proton therapy. This type of treatment is often rejected by insurance companies in favor of the photon therapy because photon therapy has been around a lot longer and is cheaper. If I didn't have insurance, the proton treatment for 6 weeks would be $42,000. Because we have insurance and have already met our deductibles for the year we won't pay anything. Thank. God. Thank. God.
At this point I had been at the center for over 4 hours and I was emotionally and physically spent. I called Paul to get me and he grabbed me some lunch and left work to pick me up.
I learned a lot during this day at the center. I found out that I will lose hair, but only in a small circle where the protons go in. From the front I'll look exactly the same. To most people I'll likely look the same from the back as well. If I put my hair in a pony tail you'll never see the missing hair spot. This hair is likely not to grow back (perhaps ever). I'll have to wear a hat for quite some time because this area will be hyper sensitive to any sunlight. The hair will come out in a clump around week 2 but won't keep coming out and won't be an ongoing hair loss concern.
I found out that the type of tumor I have and the genetic markers I have really do give me a very good prognosis. With the radiation and chemo together we have a great chance of killing all of the "sleeper" cells and though a stage three brain tumor is malignant and aggressive, the doctor said that what I have is a "well behaved" tumor which means that it is generally very responsive to treatment.
I asked again about the cancer/brain tumor question and the radiation oncologist kind of confirmed what I thought. Brain tumors are not considered cancer by definition because they can not spread to other places. Typical or traditional cancer can start anywhere in the body and spread or grow anywhere else in the body. Brain tumors cannot grow in any other area of the body. They are however considered like cancer because of how aggressive and malignant they can be. They are treated in the same way as cancer and therefore often the terms brain tumor and brain cancer can be interchanged. What I was wrong about is that when it is a stage 4 or a glioblastoma that doesn't change how it acts or reacts. It doesn't "become" cancer as it will never end up in my liver or pancreas, but it just describes how it progresses in the brain.
The doctor also explained the long term implications of the radiation treatment and shared that common long term side effects are memory loss, forgetfulness, confusion, and trouble in chaotic situations. These are all struggles I have identified since the brain surgery but he said that they will likely continue slowly. Many people never know whether these side effects are just part of the aging process in general or from radiation treatment. He assured me, however, that the side effects from radiation are much less dangerous than not having radiation and increasing the risk of another tumor.
So, I went home with my head spinning. I should get a call in the next week about when my first radiation appointment will be. On Tuesday I meet with the neuoroncologist to discuss how to take chemo and its side effects. On Wednesday I have an MRI to follow up from the surgery and get an idea of how things are looking in my brain.
Please pray for those meetings and scans and pray that I will find some peace as the next whirlwind begins.
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