Proton Therapy

I met with my dosimetrist today. To give you a quick idea of who that is, I yoinked something from the internet:

It is the medical dosimetrist’s job to ensure that radiation treatment does the most good with the least harm to the patient.

When a cancer patient is prescribed radiation therapy, a medical dosimetrist determines exactly how to deliver the prescribed radiation dose.

The medical dosimetrist first employs a three-dimensional computer model to calculate exactly where and how to distribute the radiation. To minimize damage to surrounding tissues, the medical dosimetrist may decide to use beam modification devices to better target the radiation. 

Before the patient receives treatment, the medical dosimetrist runs computer simulations and makes necessary adaptations to make sure the plan will work as designed. Then the medical dosimetrist supervises the radiation therapist in implementing the treatment plan. Radiation treatment can require one dose or several treatments scheduled over days or weeks.

So with her, we looked at the model of my body created from the CT scan. She drew in the organs in the areas being radiated so we could see where they fell in the treatment field and how much radiation each was receiving. She should us what it would look like if I had been treated with standard radiation using photons and what it looks like with the treatment I am receiving with protons. I took a picture of the screen do give you guys an idea. The left breast is what is receiving the majority of the treatment. The organ receiving radiation as a results of this is some of my left lung. With traditional radiation, my heart and more of my lung would be receiving radiation as well. My heart appears to be completely protected because of proton therapy. This is HUGE for my longterm health, especially considering one of my chemo meds can cause heart problems. My auxiliary nodes are also receiving a great dose along with the nodes in my neck. My esophagus is getting radiation because of the treatment going to my neck nodes. So far, this is posing the greatest problem but thankfully this should only be short-term damage with no lasting side effects. Right now I can only have liquid foods. Swallowing feels like razor blades are in my throat. The pain has started crawling into my ears which are now starting to hurt. When it is really bad my headache gets worse and the only relief is sleep. Broth feels pretty good, if only there was a way I could get it all down without having to swallow! I'm meeting with my doctor shortly and am hoping for some kind of relief from this. When I have spoken to other cancer patients who have had radiation to the throat area it seems like this is the normal and does go away a few weeks after treatment. I am counting down the days. 18 more secessions to go..

I went to a new patient orientation with my parents and got to learn more about the proton center and meet some patients. I really like the community this place creates. They call you family there and they mean it. I will be meeting with the media person from the hospital this week to learn how to be a patient advocate for proton therapy. There is a huge gap in education on the importance of this kind of treatment which is why no insurance companies will pay for it and few radiologists even know of it or think to suggest it. Had it not been for my cousin Mandy and the team at MGH I would have never known the importance of radiation therapy and fighting to receive this kind of treatment. I hope to be able to share information on it with my doctors back at Evanston Hospital and more locations in the Chicagoland area. 

Other than the medical stuff I am trying to have some fun. My weekdays are quite lazy, full of resting and snoozing, walks with the pup, and finding little projects to do to pass time. Usually I rally for one day of fun on the weekend. I have been lucky enough to see my Nela quite often who is always guaranteed to make me laugh and have a good time. I got to see Sam and Peter and Ryan with one of my favorite bands on Friday and had a birthday dinner for Christina the night before.

It is quite an interesting time in my life. I'm trying to find relief now while remembering every moment of this for others. These tough times fuel my need to help others in similar situations when I am finally healthy enough to.