Check-Ups - 3/18/21

In the past week, I have had my 6 month post-op check-ups with both my Breast Surgeon and my Medical Oncologist and my 4 month post-op check-up with my Plastic Surgeon.

The good news...I am still showing NED (aka no evidence of disease). The not so good news...I found out last week during my appointment with my Breast Surgeon that from here on out, there is no preventative screening or imaging that is done on a regular basis to watch for local or distant recurrence. It will be up to me to be 100% in tune with my body and speak up if anything is different, I feel off or find a lump or something. Hearing that was such a shock and very upsetting to me. I literally was in tears in the exam room and felt so lost. We are told over and over “ get your mammogram every year, early detection saves lives, yadda yadda” and it does! But no one tells you when you are diagnosed with Breast Cancer and have a bilateral mastectomy that they don’t replace mammograms with an annual ultrasound or MRI. They only do them if something is wrong or you are in pain somewhere.

Well.....that was kind of the case when we went to see Dr. Bisi, my Oncologist yesterday. We first met with her Nurse Practitioner who asked me all sorts of questions. How was I feeling? Was I taking my medication? And what, if any, issues was I having? I literally asked where I should start because the list was long and she said “what’s giving you the most trouble?” so I started with my bone, hip, & back pain. That it has gotten progressively worse in the past few months and nothing helps the pain other than staying off my feet and my heating pad (which just eases the pain but doesn’t make it go away). The first thing out of her mouth was "well then we'll do some XRays to check it out". THAT was such a relief to hear! We ran through the rest of my list which included pain in the joints in my thumbs, my hair is thinning and falls out by the handful when I shower, my nails are yellowing, my voice disappears on me at least 2-3 times a week, fatigue, insomnia, random bruising and I am constantly thirsty and feel like I am drinking a ton but it does nothing other than make me have to use the bathroom constantly. That last issue prompted her to say "You need to contact your PCP to have them run some lab work to rule out Diabetes". Great.....something else to worry about!

The rest of the appointment went well and both Dr. Bisi and her nurse practitioner reiterated to us that if ANYTHING CHANGES to let them know and not wait for my next appointment. From there we went next door and had X-Rays done and I kid you not we were finished in 20 minutes and headed home on I-270 when I got the notice that my XRay results had been posted to my account already! Of course, I didn't wait to hear from my doctor, I looked and read it to Tim. The only thing that I could make out of the medical speak was degenerative disc disease & osteoarthritis to L3-L5 and osteoarthritis in my right hip. Why all of a sudden? We aren't sure other than the medication that I am on causes bone/joint pain so it could have just exasperated it and made it show up. The other thing that I read was NO LESIONS which meant no metastases to my bones - Phew! So......I'm now being referred to a Rheumatologist for treatment to hopefully give me some relief and I'm also being put on a super high concentrated dose of Vitamin D as well.

Today, it was the Plastic Surgeon. Things are looking good and the muscle spasms that I have been experiencing on my left side are settling down and now we are talking about revisions. Yes, I'm crazy to think about another surgical procedure but I am NOT happy with my reconstruction results and I have learned from other women who have gone through breast reconstruction that I shouldn't have to settle, and more often than not, it's a process and not a one and done procedure. My Plastic Surgeon gave me 3 different options as far as HIS recommendations, so we have some decisions to make. We will probably be seeking a 2nd and/or 3rd opinion and then decide what the next steps will be.

So.......................a little more than 6 months ago, I had my mastectomy surgery. I am doing okay and I take things a day at a time. I am still dealing with the anxiety and fear of recurrence but am working with a great therapist who I really like who is helping me learn how to manage and handle those feelings but the biggest thing that will help me is time. Cancer survivors who I have talked to tell me that the fear is real, that it never FULLY goes away but it gets easier and further from the front of your thoughts.

As I type this, I am looking out the window at the rain that will not stop falling here in St Louis and am thinking about my dear friend Laura, who is laying on an operating table somewhere near Long Beach, CA having her bilateral mastectomy. She was diagnosed shortly after my surgery and we have been virtually holding each other's hands through our journeys. While our paths have been different, it has been so nice to have a "friend" to be able to text with and talk to when I'm having a not-so-good day or to share good news with. Someone who "gets it & can relate". I am a firm believer that people are put in our lives for a reason. I met Laura years ago through an online Mom's group and we have been friends for years but our diagnoses have brought us closer than we were before! We have even said that once we are both done with treatments, surgeries, healing and COVID is gone, we're going to steal away somewhere for a spa weekend and just celebrate being Breast Cancer Survivors! XOXO LLA

That's my update for now! Oh, and my 2nd COVID vaccine is on 3/31/21. We have to drive back to Moberly, MO which is 2:15 from us but it was the closest one we could find so we took it. Tim & I just considered it good quality time together.