The week started with some true tests of patience. I failed all of them. As of Monday, I had still only met with a general surgeon. The VA had denied my oncology meeting, I was told the plastic surgeon did not have availability until June and the VA hadn't released my genetic testing referral yet due to understaffing.
All three of these specialists are critical pieces to gathering as much information as I can about my plan forward, specifically my reconstruction choices. Do I get a lumpectomy with radiation? Do I get a single mastectomy with a lifetime of scans, tests and biopsies every 6 months? Do I take the aggressive approach with a double mastectomy? Also, I have fucking cancer - so I feel like meeting with a cancer doctor isn't too much to ask for.
I called my primary care provider at the Rockford VA. Actually, her nurse and my angel. SIt was refreshing to hear that she too was just as frustrated with my case and had never seen this treatment before. She said this was way too slow. She shared with me all the leg work she had done to try to get these moving and we were both at a loss. She advised me to 1.) Call the Madison VA patient advocate line to put in a complaint and 2.) Call the White House Veterans Affairs hotline to elevate the complaint.
I did. Less than twenty-four hours later, an oncologist called me, my genetics test was approved and I was able to schedule an appointment with my plastic surgeon (it's for Monday 28th).
I did lose my shit on a few people on Monday. I did drop the F-bomb on the man with patient advocacy when he compared finding a good plastic surgeon to defining a good baseball player. Otherwise, I'm optimistic. I was able to have a few good days this week without letting cancer consume my day. It felt good to use my brain energy on things not-cancer related and to enjoy the moments with my family without being distracted.
PSA: Here's a PSA announcement for you. I may appear to be holding it together. For the most part, I am. However, when you ask me "How are you?" please know you are playing Russian roulette. It's a very loaded question. If I have just gotten off the phone with the VA, you aren't going to get the answer you are looking for. Also, please please please continue to get your updates here. It is exhausting to respond to everyone individually. And I get especially agitated when you ask me on a day I am choosing to not give cancer any of my energy. If I don't answer, please don't go around me to my husband....or my mother. It is exhausting for them as well. We love that you care, but please respect the boundaries we have set.
Comments