Bungle Grind

 

Brant and I celebrated our 19th anniversary with some sweaty  VR and an amazing (carry out) dinner from C3! It was a bright spot in what has been a mentally challenging week.

I have now completed 6 days of radiation. It was going ok, and I was enjoying the complete and utter confusion I’ve caused the radiation techs by my choice of music (the “Mike Patton Essentials Playlist”) from their Apple Music library…😆 The various songs are so wildly different and/or offensive that they have apologized for playing the “wrong thing” after the death metal switched to Italian pop and then, well, Mr. Bungle… (It was all the “right thing”. 😂🤣😂)

I was under the impression that my radiation would be 3 beams- one aiming from the left side, at an angle, to my chest wall, one aiming from “above” my head down into my collarbone area to hit the lymph nodes there, and one from the right side that would hit the lymph nodes in my armpit. I was discussing this with the tech, to help make sure I’m putting the required lotion in the right places, when she said there aren’t 3 beams, there are 2 planes, and that those planes include the armpit. I was very confused, so she said she’d pull up the imaging to show me.

She opened up the image, and explained that all of the area surrounded by yellow is in the “Target zone”. I was completely floored- the ENTIRE implant is being radiated!! I couldn’t believe it! It’s not actual breast tissue, nor is it chest wall tissue nor lymph nodes, so I did not understand at ALL. She told me I would be having my weekly meeting with the radiation oncologist the next day, and that I could ask him about it before that day’s radiation.

I was already frustrated by the lack of transparency of the radiation oncologist, and the distinct sense that he’s treating possible cancer cells with no concern for me as an actual person. He has been difficult, loud, and practically secretive about what all is involved with my plan, and I really, REALLY hate that. After the major medical mistakes that I’ve experienced, it’s necessary for my mental health to feel like I can trust my doctors. I don’t feel that way with him. And, I realized that he told his colleague I’d be doing “28 days plus a boost” but that he did not say that to me, or explain what exactly a “boost” is! He just told me I’d be having 33 days of radiation. Some later googling showed that a “boost” can mean lots of different things, so it was just one more instance where I was left out of the discussion, explanation, and  plan. 

(For the record, I have since learned that MY boost will be 5 days of targeted therapy directly to the axillary lymph nodes and nowhere else.)

I was ready to go in the next day blazing (armed with knowledge and attitude, not weapons…) and had my phone set to record the conversation. But then… he was totally reasonable??! He said that he’s been doing this for decades, but that it’s all new to me, and it absolutely makes sense that I would have questions and concerns. He said it can be hard to answer with words, and that imaging is more clear, but I was welcome to write down any questions I have each week and he will be happy to answer them at our weekly appointments. Brant and I joked that he must be reading my blog because he’s never been so agreeable and helpful before. 😁

He said that the reason he’s radiating the entire implant is because he has to radiate the skin, and there’s no way to do that without also hitting the implant. He said the skin is also at risk of developing breast cancer in the future. I wish he would have been clear/upfront about that from the beginning, and I always have a little, nagging voice in the back of my head that wonders if he actually WANTS to ruin my reconstruction because he didn’t want me to have it done in the first place. He told me he’d be doing the two areas of lymph nodes and the chest wall, but never mentioned the skin, and had even implied that I was very fortunate because my implant wasn’t going to be a problem. I guess he only meant the left one? That said,  he was so much easier to get along with that it felt like a turning point, so I let it go.

The next day, I had another radiation session. I asked the techs if I could get a pic of the imaging they had pulled up for me the day before. The techs absolutely froze. It was a very strange vibe. They said they couldn’t do that, but that the doctor would be back the next day and I could ask him then.

Ummmmm… these are MY images! I just wanted to put it here on my blog! There is no reason that I should not be able to have a copy, and I even offered to let them take the picture to make absolutely sure that nothing else was included in the background or anything. It made me feel all weird and paranoid again, and I hate the whole culture there where it seems like my medical care is none of my business.

Regardless, the next day they did allow me to take the photo:

The jagged yellow edge on the right is where they are hitting the chest wall while missing as much lung as possible, the upper area is where it hits the subclav nodes and armpit (I have to put my arms over my head) and the left yellow line shows that they are hitting the entire boob, which was why I was so confused. 

Radiation damages cancer cells, but it also damages healthy tissues (and implants). It can cause damage and scarring to muscles, skin, organs, and fascia. The problem is not that it will ruin my current reconstruction (although that’s likely, too), but rather that it could cause infection, capsular contraction, or other problems down the road. My plastic surgeon said that a lot of the time the tissue expander can’t be successfully swapped out for a regular implant after radiation without complications, so I may have to use tissue from some other part of my body. I’m much more worried about this now that I realize how much area the radiation is covering.

Anyway, as far as the treatments are going, I’m tired, but that may be residual from the chemo. They said the pain, burning, blistering, and other possible side effects likely won’t start until around week 3. So far, I’m having no physical issues.

There is another thing that’s really been troubling me about the facility, but I’m going to save that for another post.

BALD!