Today was another long Dr appt. Thankfully Preston was with me and his brain was able to ask the most important questions...
We again discussed the surgical options for tomorrow. Even though I think my Dr is not ok with it, we are going to go ahead and choose the option to NOT take out the lymph nodes if the sentinel node is negative. There is still so much info and not enough info out there to really make a defined decision either way. Things are more challenging because none of of the studies really apply to me because we did things backwards (chemo before vs after surgery, positive node up front, but not maybe now)
We are just trying to make the very best decision that we can with the info we have and weighing the higher risks of lifelong complications vs not....
We also discussed my long term health plan. There is SO much more than I ever realized. After surgery, I will have a surical post-op appt, and will most likely have my port taken out at that time. Once my surgical site has healed sufficiently, I will start on radiation. Radiation treatments will be 5 days a week for 6 weeks. Dr M said that everyone is different, but there is the potential for me to be nauseated or have skin reactions. She said that the treatments will be cumulative, so no trouble at the beginning wont neccessarily mean no concerns by the time we are done. Really just wont know until after we get started.
After radiation is completed I will see Dr M again and she will get me started on the meds I will be on the next several years or even the rest of my life. She will also coordinate the next set of monster tests - Mammogram, MRI, CT, etc. We will also get appts set for labs that I will need to have done every 3 months. She will be helping us coordinate everything and then hand me off to the oncology PA for 2 months while she is on maternity leave. She seemed to think I would be in good hands, but encouraged me to continue my search for a primary care provider. Hoping that will happen sooner vs later...
Overall, I think both of us came away from the appt with the info that we needed for surgery and then a whole lot more we didnt even realize we needed to know. I am trying not to be discouraged with so much more that is still on our plate. It wont be near the stress and care that was required for the chemo, but still a lot to think about and be able to manage....
We had one surprise at our appt - a improptu visit from the oncology team social worker. Dr M was running behind so she popped in to check in with me. I didnt realize that I had needed someone to talk to. She mentioned she saw in my records that I had been in the hospital and that started off a whole cascade of concerns and worries and things from the last month and everything still coming tomrrow. I guess sometimes it is nice to chat with someone outside the circle of our daily everything. She is really nice and listened and gave encouraging feedback and suggestions. It was nice to just let some of that stuff out.
Well, guess that is all for now. I am going to try to get a nap (since I didnt get any rest again last night when my heart rate decided to jump almost outside my ok window) and see if I can finish up all of the pre-op preparations and get the kids packed for their auntie sleep over. Still lots to do, and lots of time to practice being calm...
Preston will probably be posting throughout the day tomorrow or will for sure post after I have gone to surgery. Stay tuned for more updates of our adventures!
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