Ricochet

 

I haven’t checked in since last week. It was chaotic and stressful and my brain needed to sort it all out before I tried to post about it. I have still been receiving radiation treatments, though, and (as you can see^^) I am starting to get the burns and rashes.

I guess I should backtrack, though, to where I left off last time. I did, in fact, call my medical oncologist and express my desperate desire to be seen by a radiation oncologist who sees me as a person, considers the big picture, and respects the decisions I have made this far in my cancer treatment (in this case, my decision to have reconstruction).

She said there is a radiation oncologist in Martinsville that I could see, and that she has the same type of radiation machine as the doctor here, so she wouldn’t have to redo my mapping and there wouldn’t be a delay in my treatment. Her office called and set it up.

The appointment was scheduled for the next day. The radiation oncologist called me herself that morning and asked me to come in earlier so that we would have plenty of time to talk(!!). We ended up being there for about an hour. She was nice, and explained basically everything about radiation. I would not say that I had the opportunity to ask questions, but she was very informative. At the end of the appointment, I was shocked when she said that she would not be able to see me, it would be best if I continue with the same doctor at the same facility where I started, and that she would “call him tonight and try to get him to be more empathetic”.

 I was completely confused and upset, but it was clear that she had never intended to take over my care. I felt very “set up”- like it was all just a tactic to placate me and keep me in-network. She said that she would still have to come up with her own plan, and that their machines are still different because they’ve had different levels of use, and by the time she came up with a plan I would be almost done with radiation, anyway, because it would be the end of June/beginning of July. She also noted that a lapse in my treatment could increase my cancer risk, so waiting the 2 weeks was not an option.

We told her that I wouldn’t be finishing until July 14th. At this point, she became confused because she thought I was doing 28 days. We told her that was true, but he was also going to add a 5 day boost. She said that a boost would not be appropriate for my diagnosis, and that she would talk to him about that, too.

I was extremely stressed to go back to the original facility the next day. The doctor and staff would, of course, now know that I had gone elsewhere. On my second day back, the doctor wanted to meet with me…

This particular visit, Patton was with us. He had never gone with us before, but it was a Friday so we didn’t have a nurse. I will spare you the whole conversation, but apparently he does respect the colleague who called him. He agreed to remove the boost, as well as reduce my sessions from 28 to 25. He said that the standard of care is listed as 25-28 sessions and that he was comfortable with that. He said it would not compromise the efficacy of my plan. I’m not sure why he didn’t offer this in the first place, or at least after I’d asked if there was anything we could do to try to minimize the damage to my reconstruction, thyroid, lung, muscles, tissues, and skin… but at least he finally did offer it.

We had a long talk about his lack of respect for my reconstruction, and basically left it at a point where we agree to disagree but he will still actively try not to cause damage.

We also discussed Patton’s birth, and how my tumor was originally missed, and how all of that has forced me to be a person who asks questions and is an active participant in all diagnoses/plans/decisions/etc. I told him that I’ve learned the hard way that I can’t always blindly trust doctors, and he was in full agreement. 

Overall, it was a much better meeting with him, and now I only have to see him 2 more times! My end date was originally July 14th, but now it’s July 1st!!!

The side effects have been tolerable. I have a lot of fatigue. I have the rash and redness that you can see in the above photo. The worst and most painful burns are in my armpit.

I have to use an assortment of creams and ointments to try to keep the skin from breaking down, which is why it’s so shiny. It hurts, but so far it hasn’t blistered, oozed  split, etc.

I have some sleeping difficulty, dry skin, occasional lightheadedness and nausea, and the hot flashes are absolutely awful again.

^^This is what the hot flashes look like. I did not just finish exercising- I just finished a cup of coffee in a fully air conditioned house… Uggghh…

I see my medical oncologist Tuesday to find out the next steps of my treatment. I have my first haircut next Thursday, because I (mostly) have hair now! In spite of my burns, I’m actually doing quite well with radiation, and now that I’ve sorted things out with the doctor I don’t dread it every day. Overall, things are pretty good right now.