And for now I’m not talking about financially. I’m talking about physically, emotionally and mentally. I’ve had so many opinions it is getting difficult to navigate the murky water. The swiftness with which my position and plan can change is astounding both me and Jeremy. I left an oncology appointment today at UCSF wanting to pump my fist in the air. Feeling like I had it figured out and I knew what to do. I sent a text of thanks to one of my healthcare advocates. Minutes later the phone rang and there I was… I was swirling again. My plan doesn’t work; the team is not correct for me. It immediately feels like a step backwards, like we are losing footing, losing time. But I know that is not the truth as my dear friend reminded me tonight - you have more time to plan than to execute. I only have one chance to get this right and choosing the correct team (surgeon and reconstructive plastic surgeon) is essential for my success. So now tomorrow I will wake up and once again start working hard advocating for myself, leaning on those I trust, trying to get more appointments with the right people. One thing has definitely become clear, I am having a bilateral mastectomy, non-nipple sparing with reconstruction that starts with expanders.
For those that are keeping track on my surgery date, it will likely change. As mentioned, I have a few more appointments that still need to be scheduled and I would not be surprised if the date of 2.26 moves back by 10-14 days.
Yesterday had already been a long day... like a really long day. I already talked about that in my last post and was so happy to see that today was the last long day planned this week. That might not still be the case as the week progresses, and that has to be okay. I don’t think I knew what they meant when they talked about fighting cancer. You fight from day one. You fight for your doctors, you fight to keep your family safe and protected, you fight for your own well-being. And then once you have a few things figured out, I guess you start to fight the cancer.
I finally started a spreadsheet to track all the appointments I have had. There is no way to track all the calls and emails with doctors, nurses, nurse navigators, nurse coordinators, counselors and more. I think that number would spike my anxiety to new levels. What I can tell you is that in the last three weeks, I have had 21 doctors appointments or procedures. That is a lot. For some reason they have seemed to come in clusters. Maybe this is the way to prepare me for the roller coaster that will likely be chemo. Really hard days and really good days.
I am really worn out. I’m trying to stay positive and not get overwhelmed with the information and decisions but it is hard. There are so many moments I feel strong, but definitely more moments than I would like that I feel very weak and helpless. So like I said before, one foot in front of the other as I fight to make the best decisions possible.