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August 22, 2020 - Plan B
One month ago, I was rushed to the ER for a precarious brain tumor. It is hard to believe all that has transpired in 30 short days. As I sit at home on this cloudy Saturday, I am thankful to experience it.
For those of you that read my last blog, my apologies for all of the grammatical errors. Note to self - updating your journal while you are still sedated from medical procedures is probably not wise. I attempted to update the egregious errors, but I'm sure some still persist.
For those wondering, I am feeling good. I am no longer taking any medications (at this juncture). I still have a nagging headache, but it is very minor. I wouldn't even mention it if I weren't writing about it. Of course, I didn't mention the extreme mind bending headaches that I experienced before the Craniotomy. At least we are all on the same page - I suck at pain threshold and the appropriate time to "cry uncle".
Mason is doing well. I think that my current foibles has only aided to his Lego addiction. My cancer is certainly enabling his habit! Between his daddy, aunt, and many friends, he is successfully adding to his Lego collection. He did "buy me" the Statue of Liberty yesterday. He is putting it together as I type. I promised that I will take him to see it in person after Covid subsides. I will keep that promise!
He is such a sweet kid. As he is putting it together, he is watching the movie "Wonder" again. He loves that movie. He is actually reading the second book, "Auggie & Me". Usually it is an Avenger type movie or something in line with Boss Baby humming in the background, so I'm all in favor of Wonder!
So, next steps and what are they? Last Wednesday, Jamie and I met with my Oncologist.
Side note: When I see my oncologist, she always gets a blood draw to analyze my numbers. On Wednesday, it only took ONE stick. Winning!
I have mentioned it before, but I will say it again. I love my Oncologist. She is a straight shooter, doesn't pull any punches, truly cares about me, and gave us her cell phone months ago. AND, she answers it if we call! Well, we usually text, and not often, but when we do, she is johnny on the spot. And, I trust her.
She has a plan for me, but her biggest plan is for me to transition my care to the Mayo Clinic in Jacksonville. She assured me that she is not abandoning me, as I tearfully asked her. She assured me and promised that she will still be a doctor on my case. Her point is simple. She said, "I care about the quality of Your life. I care about Jamie, and most importantly, I care about the quality of life of Mason".
I should probably back up. I have Stage 4 Metastatic Breast Cancer. This means that I will undergo some form of treatment for the rest of my life. It could be in the form of oral medication, but more than likely it will be an infusion on a regular basis, such as every 3 weeks. She has a plan for me. It will involve adding a new port and receiving a targeted chemo drug every three weeks.
In fact, we have it scheduled at Northside in Atlanta for Port Insertion on September 8th and my first chemo dose on September 9th. (Interesting Fact: September 9th is the 1 year anniversary of my First chemo dose). That is our Plan A.
She made a referral on my behalf to the Mayo Clinic in Jacksonville. I now have an appointment with a "new" oncologist on September 1st. If we like him and if he agrees with her treatment, we will likely proceed with the same path at Mayo. There is a chance that he will disagree with her treatment plan and wants to try a different drug/process. Once we meet with him, I will update with our decision and the path of treatment.
We have learned that there has been much study on HER2+ breast cancer. This particular drug that she would like me to start specifically targets HER+. There are many others. Net net, the outlook and possibility to find a drug to quell this demon is very high.
I will still travel to Atlanta every 3 months for a brain MRI. I'm not ready to abandon the Neurosurgeon who just cut open my brain and left me with 21 staples, LOL! However, if things go well at Mayo, I can see me fully transitioning there over time. A 15 minute drive to Mayo sure beats a 6 hour drive to Atlanta. This would also solve our heart wrenching hurt of leaving Mason so frequently and for multiple nights at a time.
People may still ask why we left our beloved 30A for Ponte Vedra Beach, well this is it! We wanted to be near quality healthcare in the event we needed it. Of course, we were thinking we wouldn't need it for many many years. I am hopeful that we believe in and trust the medical professionals at Mayo. AND, my Atlanta oncologist has offered/agreed/insisted on remaining on the case. We will see her when we are in ATL and she will confer with the new doc - as long as we like him :-). This would mean choosing Plan B.
So as soon as I know the Plan, I will share. In the meantime, I am returning back to work on Monday. Mason begins 5th grade at his new school on August 31st. And on September 1st, we hope to have clarity on Plan B!
Love to you all!