October might be breast cancer awareness month but for me, it is the month I seem to have follow up appointments with my oncology team so it is like Alexis' Cancer Awareness month. It is always a little scary to go for follow up appointments but I had a good feeling this time because I'm feeling pretty good and haven't felt any new lumps or bumps. I also didn't have any new scans which keeps a level of calm around.
I started with an appointment with Dr. C, my radiation oncologist. It had been a year since I saw him last. He was mainly interested to see any residual side effects left from the radiation. I have him trained well as he came bounding in with a smile on his face and an optimistic view. He was basically thrilled with the eye. He was so excited I regrew eyebrow and eye lashes. He said he was really hoping that would be the case and was thrilled everything stayed basically symetrical. He asked about the dry eye which I told him is still an issue. In fact, I had tear duct plugs installed (a surprised to me) at my last eye appointment. But I can live with that and it seems to be helping. I still have a slight dent, most likely from the surgery than radiation. But I can sort of live with that. And most important, my vision was not impacted. Well actually, most important is that there is no sign of cancer lumps in there. He said sometimes they can be very stubborn. I reminded him we "fried the shit out of my eyebrow" so we did a good job and obviously it did the trick. All really good stuff.
One thing that caught me off guard is he reviewed my medical history before coming in the room. He was floored with what I had been through this year. I had practically wrote it all off. It was like I needed a reminder. Starting with Johns Hopkins in January and again in June. Throw in a hysterectomy in March. And an adjustment in my diagnosis for my muscle disease to include a terrible and detrimental diagnosis of IBM (inclusional body myositis). That is alot. And I guess it is. I just seem to take it all in stride. Maybe it is a case of denial but I think I am living it all. I just choose to not focus on it. I can't let all this crap define me. And honestly, I've been feeling really good all summer. I credit that with the weight loss and removing my uterus. Both very positive things that I had no idea were weighing me down so much. He mentioned I was "Beating the Odds" with my cancer. I knew that inside but it made me a little emotional to hear an member of my cancer team celebrate that as well.
Thursday, I saw my most favorite oncologist, Dr. L. In the cancer world, going 6 months between appointments is huge! Since then, the MA that I usually see had a baby (and lost all the weight). There are new people at the front and back desk. And there are new nurses in the infusion area. What is not new is Dr. L and the great relationship we have developed over the years.
Since I don't have an cancer concerns, we spent time talking about IVIGg which was the recommended option from Johns Hopkins for my Myositis. Dr. D had done some pre-labwork that showed my immune system is "low" (tell me something we don't know) but she wasn't positive what would cause that and asked that I ask Dr. L. Dr. L frankly didn't know either. He said sometimes you see it low in people with active lymphoma or people that have had heavy duty chemotherapy. Neither of those fit me. So we just agreed that my immune system is weird and doing weird things and as long as it isn't getting worse, we are probably okay. He said he would support IVIGg for me but agreed with me in the thought of "why rock the boat?" when I am doing relatively well. If I change my mind and decide to try it, he will partner with Dr. D on the plan to make sure I am doing as good as possible. He also said he has options for infusion centers we could use. That made me feel pretty comfortable since he knows the IVIGg process better than Dr. D.
On the cancer front, there are no lumps or bumps. Blood work looks great (I'm doing okay even with a cocktail once in awhile) and feeling pretty good for a girl with a messed up immune system. No scans this time and no reason to do scans since things seem well. I will see Dr. L again in 6 months unless we have anything "lump" up on me.
I am beating the odds like a BOSS!
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