It is fitting that my long awaited post comes on April Fool’s Day. I haven’t written in so long it feels like a prank! But it is not. I finally sat down in front of my laptop to put words on a page.
The last 2 months - yes it has been 2 months since I posted - has been fraught with a lot of emotion, frustration, worry, heartbreak, but also much happiness. I have enough content to span multiple entries, but I will try to focus on the highlights. No promises, as you know my penchant for oversharing!
We have been lucky to spend time with many friends over the last 2 months. We have had visitors come from far and near. It has been busy, but worth every second that we get to share our lives with those we love. I also have a network of very strong and vibrant ladies in my neighborhood. They provide a constant stream of love and support. I am so blessed.
Mason’s Spring Break was in March. I feel very fortunate that we were able to create a once in a lifetime memory with him. I am also thrilled that I felt well enough to participate and enjoy! If you are a Star Wars fan, then this is for you. We were lucky to “board” the Star Wars Galactic Star Cruiser for a 2 night voyage into space. It was an all immersive Disney experience that put Mason right into the middle of the action. He was fighting for the Resistance against the First Order. He received light saber training, bridge training, and even built his own heavy duty light saber. Our trip also included a stop on the planet Batuu, which allowed him to experience that planet, pilot the Millennium Falcon, and actually Rise with the Resistance.
Mason knows this was a once in a lifetime voyage, and he enjoyed every minute of it! Sigh, to be an 11 year-old boy with such an imagination. It’s hard to believe that his 12th birthday is coming up soon. We will not be able to top this.
[Disclaimer for non-Star Wars people: We really didn’t leave the galaxy. It is a Disney hotel that is so immersive, you really do feel as if you are in another world. Ohh….and the planet Batuu is the Star Wars section of Hollywood Studios.)
There is no good segue from Star Wars to Insurance, or if there is, my brain is incapable. As you know, one of the drugs in my chemo cocktail is Hylecta (Herceptin that is injected via a shot). This drug is given to me every 3 weeks at Mayo. I am thankful that I am able to take the shot versus an infusion. Alas, the insurance company “updated” their formulary list and it is no longer available to me.
Literally, 2 weeks before my injection, I received notification that the injection would not be covered. The insurance company recommended that I have surgery to receive a PORT1, and begin taking an infusion of a biosimilar drug. I repeat, the INSURANCE company recommended my care. As you can imagine, this was not welcoming news.
My oncologist at Mayo stepped up in a big way. He had a Peer to Peer discussion with a “doctor” from the insurance company. That meeting occurred on the Monday of my Wednesday appointment. The insurance company remained steadfast and did not change their decision. My doctor then did an expedited appeal. By the grace of God, they finally approved it. I was able to receive my injection on Wednesday as scheduled. Whew!
Those 2 weeks were nerve racking. It wasn’t just the thought of getting a PORT again, which I would like to avoid as long as possible. It was also changing up my chemo cocktail that is working! Even though the “new” drug is a biosimilar - it is only similar, not the same. It would bring on a new host of side effects.
I am very fortunate that my doctors at Mayo remained committed to my care. My employer, SAP, also stepped up and had many conversations with the insurance carrier on my behalf. I am forever thankful that my care is determined by my oncologist and not an insurance company.
Cancer is big business, and I mean big money business. I have a lot of opinions on this topic, but I will save it for another day.
In March, I also had another PET Scan. Thankfully, my results remain steady. My meds are working! My goal is to stay on this path for as long as I can!
This is probably the main reason that I have been silent for so long. In January, two people that I personally know succumbed to cancer. They were both colleagues. One was a gentleman that I worked with on the same team many years ago. We are about the same age. He had brain cancer that took his life way too soon. He left behind his wife and kids. He was a kind soul and is gone way too soon. My heart breaks for his family.
The second was a beautiful wife and mother. She was much younger than me, with 3 small boys. She had breast cancer that metastasized to her liver and other organs. As recent as last October, I watched a video that she recorded for SAP about her journey and continued fight. She looked healthy, happy, and determined. She inspired me. She only lived for 3 more months. It was hard to hear the news. It’s so unfair.
These deaths are a sobering reminder of how insidious cancer is. Cancer does not discriminate. Cancer marches to its own time table. And, I am very lucky. I am still here.
As I began this post, the last 2 months have brought much joy to me and my family. There is always the shadow of cancer looming behind our laughter. It is important to keep perspective, and not lose sight of what is important. Jamie and I made a commitment to make each day our best day. And, as long as I have good days, we are going to exploit them. As we all know too well, tomorrow is never promised to anyone.
What is a PORT? A port is a small disc made of plastic about the size of a quarter that sits just under the skin. The placement is typically in the upper chest area. A soft thin tube called a catheter connects the port to a large vein. Chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port.
Pray for you every day and cherish our times together and can hardly wait to see you again!!!!!!
Love this picture of you three. What a fantastic adventure this hotel offers! Mason must have been SO stoked. Would love to catch-up. Take care and call when you can. 😘
Girl, you are my hero and one we pray forEVERY DAY. We love you bunches. Hugs to your guys 💕
Thanks for posting, updating and getting into gory details … yep Carol still has her port but fortunately remains in remission. Glad to hear you managing the disease as you do and the personalities that we at times would love to hate … glad you made it through that insurance hiccup (or derailment). Think of you all constantly … wish you well continually, pray for you regularly … thanks for sharing with us … love from Don & Carol
As a fellow Star Wars junkie, I can say that my mind is blown! So great that you could take Mason for this. It is something that I likely will never experience - since I would have to go on my own :-) (Paula would roll her eyes at me). Tomorrow is never promised, and I'm so happy to hear that you, Jamie and Mason are able to make so many great memories. Praying for your continued positive results.