UPDATE, 2 weeks post surgery:
I developed a fever of 102 from an infection, and felt like crap again for a few days.
I learned that I actually had REFILLS on my antibiotics and should have remained on them for 3 weeks, not just 6 measly days. (Really wish the pharmacist or the doctors had gone over that!)
Two of the four drains were removed, so I’m less of a bulky octopus than I was before.
Steri-strips came off and I can see the incisions and what will become scars across my new breasts. It’s a very shocking thing to get use to seeing. The doctors and nurses say, “Wow, you look amazing!” What else would they say? (“You look like a hideous monster! My God, what did they do to you?!”) …be thankful, I keep telling myself.
I’m pretty sure I’m driving my husband crazy. He watches over me like a hawk to make sure I don’t do something stupid, like use my arms. Joey takes care of me, Julian and the household and manages to stay up on his Mets games and catch a few hours of sleep each day.
There is a more important story to tell though… On Friday, we had an appointment scheduled with the oncologist. This was to be our second time meeting since the first meeting shortly after diagnosis, although we had spoken on the phone a few times after that. The intention was to go over the surgical pathology report and lay out a plan for the chemotherapy treatment ahead. We were going to look at all the data, run through a computer model to see what outcomes of survival and reoccurrence would look like with or without chemotherapy and compare stats for different types of chemotherapy drugs…. or so I thought. I have been feeling very nervous about this pending appointment and starting to dread this next part of my treatment.
Here is what happened. We show up on time for a noon appointment, sit in a drabby waiting room, are asked to fill out paperwork that I had previously already filled out. OK. We are taken back into an exam room. After a nurse takes my blood pressure, and tells me the doctor will be in soon, we are left to take in our surroundings. I know after my many doctor visits, my 2nd opinion at Sloan Kettering and from my research that patients undergoing chemotherapy have zero immunity and are very vulnerable to germs. (At Sloan, even the security guards wear face masks and there is hand sanitizer everywhere!) What we saw was appalling. There was a thick layer of dust on things, dirty walls with bad dry wall patches, dried blood on the floor, and stuffing sticking out of the exam table upholstery which had no paper on it. We waited for a half hour and finally some random Dr. came in and tried to begin the appointment and I had to explain that the visit was scheduled with MY oncologist, who knows my case. A total of 90 minutes later, we start to walk out of the room. Enough is enough… and here comes MY doctor, ready to see me. She apologizes for the delay, but after she thumbs through my folder and tells me she doesn’t have the pathology report, we head for the door. I had called her office one week prior and earlier that same morning to make sure that they had obtained the report. Are you kidding me!? The hallway of this place was lined with people who looked like they were dying, lying on cots for us to see as we walk out. I felt so sick to my stomach. This is a place where people come to die.
Moral of the story… Do not feel bullied or pressured to be polite and quietly suffer in a place that does not feel safe and respectful of your rights as a patient and a human. Do not settle. Ask questions. Ask for help. Bring someone with you if you are not well enough or confident enough to advocate for yourself.
Now, I am armed with a long list of approved oncologists in my network and I know I’ll find a better fit to round out this leg of my treatment. Onward!