But in spite of my desire to withdraw and escape, I have still had to face a lot this week.
Monday was my "planning" session with the radiation oncologist. They use a CT scan machine to locate the remaining tumor and map where they will zap me with radiation. This involved becoming tattooed. Nothing fancy. Just three little dots as reference marks.
Have you ever done something or been somewhere and thought to yourself, "This is just not right . . ."? That was how I felt at my planning session. It wasn't the people helping me or the place, it was just the whole idea of that type of radiation in general. After hearing about all the side effects and risks of damage to my body, everything in me is fighting against it (when I allow myself to think about it at all).
But at the same time, I can't really skip radiation altogether. The lymphoma might come back and we would have to start all over again. And I definitely don't want to start over with chemo!
Wednesday I had another PET scan to take a look at my tumor again post-chemo. This was just the usual injecting of radioactive glucose into my body to be absorbed by the tumor cells. And taking a picture to see just how "active" the cells are.
It was actually a good mental break for me, sitting in quiet for two hours, because my brain has literally become "hypersensitive" as a side effect of the chemo. It has become difficult to even single-task (as opposed to multi-task). If I have to think too hard it actually makes me nauseated.
Thursday we got the report on the PET scan and it was an "improvement" over the last scan. It is difficult to say if what remains is actually tumor cells or just residual inflammation. But if any cancer cells are remaining, radiation should take care of it. According to my doctor, I definitely don't need any more chemo!
Also Thursday I started looking into another type of radiation called proton therapy. We have had three doctors tell us that it was not an option. But our friend, Bernie, a cancer researcher, had mentioned it WAAAY back at the beginning of all this and so I still held out hope that I might be eligible. There just has to be a better way to radiate me without permanently damaging my insides . . .
I called the MD Anderson center in Houston (the only one in this part of the country) and they said the ONLY TYPE of lymphoma they treat at the proton center is one involving a MASS IN THE CHEST. Hallelujah!!
Stay tuned for the Proton Center story . . .
3 comments:
Dear Molly,
There are five proton centers in the U.S. I too sought out proton over photon because of healthy tissue potential damage. My 3 yr. old son Jacob had his proton at MDAnderson. You can check his story out at www.caringbridge.org/visit/jacobralston. Best of luck to you! I hope you get to protons.
Susan
Jacob's Mom
Molly, I am so sorry for what you are going through. How exhausting. I think it's hard, too, when you identify yourself as a sick person. First you are this person, then you are a wife, then a mother, then you feel more like a patient and sick person and not at all feminine or a caretaker. And you also would love to be the person doing for others instead of being on the receiving end.
I hope the radiation works for you- especially the protons. My dad was a radiation therapist until a year ago.
I'm glad to hear this Molly. As I have been praying for you as I walk, I have been praying for the side effects from the radiation. I have been praying that they would not hit you all at once and gradually, but you know never know how your body handles it. This may be a better option for you as your heart and soul is telling you it does not feel right with the current radiation plan.
Teresa
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