I left work to pick up my mother so she could help me remember all the things they might tell me during the consultation. It's also nice not going to these appointments alone and sometimes you just need your mom. This appointment seemed like it would be a breeze though. It was a consultation. I had no expectations of needles or tests. I envisioned sitting in his office discussing the chemotherapy treatment plan. Maybe sipping on some kind of beverage.
We arrived early and I got a cup of tea. They used real coffee mugs!? So very trusting of their clientele. I hadn't even had a sip of my drink before they called my name. No office, as I imagined. It was an exam room. Ugh. Okay, maybe they just preferred these conversations in the exam rooms. I mean it was a consultation, there should be no needles, right!?
First a young nurse took my blood pressure and then another nurse joined us in the exam room. The first nurse left. (Trying to remember people's names during all of this will be impossible, I've already met so many). After going through a series of questions, the second nurse then left me to sit with my mother and wait for the doctor. I figured that this meeting wouldn't last too long. I mean, "Here is the plan. Go on about your way." The appointment started at 1245, mind you, so I planned to be out of there by 145 or 200?
My mom and I sat chit chatting about random things. I realized that, even though I talk a lot and quickly in my normal day to day life, the level of chatter had increased dramatically. Clearly, I was nervous.
The doctor finally came in and proceeded to ask some of the same questions regarding the history. It seemed to be par for the course, repeating my entire history for everyone. But, as I mentioned, I was in a chatty mood.
He stated that I would definitely need radiation. I had a lumpectomy and since I had that instead of a mastectomy, having radiation would ensure my prognosis would be the same as if I had a mastectomy. Okay. Then the chemo talk. It was another moment where the ball was in my court on what we should do. To stick with that analogy, I passed it back. I wanted their advice on what his medical professional opinion was as far as what we should do next. I felt and feel ill equipped to make those decisions. Honestly, I can do research til I'm blue in the face, but at the end of the day he is the one that went to school for this. He is the one that has been doing this for 21 years. I needed his professional opinion. Which he was more than fine to give me, in a sense. We took the long way though.
Sometimes I wonder if I should have just gone with the radiation. But here are a couple of things I found myself explaining to other people so they understand why I'm doing what I'm doing. Many people think chemo is bad or worse than the illness. I get that. In a lot of ways it is, but statistically it has been proven that chemo works very well with breast cancer. Especially, triple negative breast cancer.
Some people ask why I wouldn't just have the double mastectomy. According to my doctors, my survival rate is the same. So if they removed all of the cancer and I do the radiation, it's not necessary. I tested negative for the BRCA genes. So again, no reason to go that route. And my mother did not have breast cancer or never had it before. (knock on imaginary wood) My grandmother did, but because she was not a direct link to me and she was in her 60s when diagnosed, they did not feel this would constitute a worrisome connection to me.
You also must understand, I may not say things exactly right, but the point is correct. None of these things will change my survivability. And then I thought about odds. I had a 1 out of 8 chance of having breast cancer in the first place and I got it (based on the above). (probably even less because of my age) I had a 25% chance of the biopsy producing cancer results. I had/have cancer. I had a 10% to 20% chance of having triple negative breast cancer. Ding! Ding! Ding! Got that too. So when I look at the 12% odds of NOT surviving 5 years and 17% chance of NOT surviving 10 years, I want to close that gap. Whatever is in my power, to the best of my ability.
Without chemo (based on all my specifics) I have 88% chance of a 5 year survival and 83% of a 10 year survival. With a milder form of chemo these numbers raise to 90ish and 85ish. However, with the most aggressive form of chemo, known as AC + T or the Red Devil plus Taxol, I have a 92% and 87%. Again, I want to close the gap.
The other good news is that in 2007, triple negative survivability was 77% instead of 88%. Perhaps in the next 3 to 5 years where I really need to be worried about a recurrence, they will have found or uncovered more treatments to help get me closer to 100% survival, no matter the stage.
This all sounded good. But again it's not fully up to me. There would be tests. That is when the disappointment really set in. I was being told to disrobe from the waist up and put on the gown. Ugh! Really!? And then told after that I would need a blood draw. NO!!! One appointment. I did manage to avoid the flu shot. He brought it up in the consult, but forgot at the end.
Also, I was told that before they could decide on which chemo to use, they needed to test my heart strength as the red devil will weaken it. (This is where the type of chemo may not be up to me) So I need an IV dye in my arm. Scheduled for Monday. A chemo class on Tuesday. Port "installation" (sounds like a cable company) on Wednesday. I then meet with the oncologist again on Thursday, have a chest xray on Friday and another blood test on the following Monday. Oh and let's not forget the counselor appointment on the 8th. And chemo hasn't even begun....Blah!
I disrobe and he returns to do an exam, check my breathing and etc. He asks my mother if I've always been like this. I assume he means the incessant rambling. She confirms that it is true, I'm a jabber jaw.
Then I'm dressed again and being thrown booklets, brochures, and more paperwork than I know what to do with. Including freezing eggs as the aggressive chemo will likely make me infertile. However, it doesn't really matter. We can't afford that procedure anyway and my insurance doesn't cover enough to make it affordable.
Then the patient navigator comes in and goes over the "Angel Foundation". It's all things for my daughter and helping her cope. Counseling, classes, dolls, markers, and even the possibility of tickets to ice capades and a free summer camp of some kind.
I did get a pink pillow for my port to place between my port and the seat belt, but I explained that the pink pillow would likely be commandeered by my four year old, so she retrieved a more "boring" pillow and stuffed the pink one in the blue little back pack they brought out with the rest of her things.
I found I can even attend a make up class and get some free cosmetics in the process. I love make up, even though I don't wear it often.
We left with even more paperwork and the string of appointments scheduled and headed to Cowboy Jack's for a quick bite before I picked up my daughter from my mom's. We walked through the door. I laughed and said, here I was trying to find the perfect wig in preparation for the hair loss coming my way and I should have just come here instead.
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