I was wondering how today would hit me. Although I forced myself not to think about it. It’s just another Friday. How is anyone supposed to feel on the anniversary they had their world blow up in their face? It’s a slope I can never seem to navigate comfortably.Â
I Don’t Know What To Call Today – Does It Need A Name?
Ten years is a long time to survive in the world of metastatic cancer. This particular year is such a mixed bag of emotions. So many friends are gone, a few are really struggling, and another I’ve known almost as long as I’ve been in these circles and have the utmost respect for will be entering hospice. While I know this is how it all goes, I have conflicting feelings about celebrating my longevity. I can count on one hand the people I know who are living double-digit years with MBC. A few, like me, have reached the elusive 10 yr mark. Are there more? No doubt, but I can only go by who I know. Am I grateful? Absolutely, yes. However, I didn’t do anything unique or different than anyone else has or will.Â
I wrote about this in an article featured on Health Union’s AdvancedBreastCancer’s website earlier this year. Now that this day is here, I relive that particular day as I do each year. Groundhog day, if you will.
Hour by hour.Â
Minute by minute.Â
Each action, conversation, and phone call that happened that day is engraved in my memories and replays like a D-list horror movie, whether I want it to or not.
What I Wish I Knew Then And Burden Of Loss
I wish I could go back and tell that frightened and angry younger me that while the doctors meant well, they would be wrong about my prognosis. I would tell her this ride won’t be all pink glitter and sunshine but that she would meet people and have experiences that would fundamentally change her. I would say to her it’s OK to feel all the feelings, that a perpetual smile won’t help or cure her no matter how many insist that positivity is the key.Â
Since Tori died, things don’t seem to hit the same way for me. Her humor, her wisdom, and her understanding of all of this was such a comfort. It hasn’t gotten easier. It never will. I have to learn to live without her. I hold on to our conversations, shenanigans, and the other close friends she introduced me to. I know she would be so that we talk regularly and have helped each other.
The Bright Sunshine Burning Away The Gloom
The day is half over, but not the worst part. That comes at 5:30 p.m. That’s when I received THE call. That’s when I finally understood the gravity of those words. When my brain began to swim, I felt like I was drowning. The oxygen left my lungs as I thought of how I had to tell my loved ones and my then 14-year-old son what I knew.
As the clock ticks down to that hour, I will focus on my beautiful granddaughter, Piper, and my second granddaughter, arriving in October. Piper has been the gift I never dared imagine I would know. Her sister, Sophie, will be another blessing in my life. It’s those girls that I will be focusing on.
I don’t know what the scans in November will show, and right now, I choose not to think about that. I know that whatever the results are, I will continue to live a life my granddaughters can be proud of.
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In my last post, I mentioned my blood pressure was unusually high. Since that post, my breathing has become more labored, and my fatigue has been off the charts. My chest was also beginning to hurt. It’s like a cramping feeling with pressure. My heart was OK. Was something wrong with my lungs?
At my Pulmonary appointment, the NP suggested we walk around the office while she monitored my blood oxygen levels. On starting our second lap, the pain in my chest began to feel worse, and I had a hard time catching my breath. My oxygen level plummeted to 89%. I was on the cusp of reaching the point where they would suggest oxygen.
Instead, I was scheduled to have a CT Angio. I was not in any way anxious about this scan. There’s no way I had a blood clot in my lungs. As I left the radiology office, I half expected to see a notification that test results were ready to view – meaning nothing was wrong.
Lungs, Why Are You Betraying Me?
It wasn’t long after I got home that my phone rang. Still not concerned. It was my Pulmonologist. She called to tell me I had several small blood clots in the left lingular subsegmental pulmonary arteries. I had to start a blood thinner immediately.
Anatomy of Lungs
I was floored. This was not how I expected the day to go. Definitely not that call or those results. BUT – at least there was an actual reason for why I had all these symptoms.
Answers Lead To More Questions
Now all I can think about is, why? What caused this? Both of the medications I take for the cancer have a possible side effect of pleural effusions. Is it a fair assumption that this would happen after seven years on the same meds?
Could the cancer have woken up and become active again? OR is it as simple as I previously had a DVT when I was first diagnosed, and I’m at a higher risk? Regardless, I would like to know why or what caused this, but I may never know.
As for now, scans will be in March. Hoping to have a very UNeventful February.
Oxygen is going UP!
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To put it bluntly, the last half of last year was a nightmare. We have been without an elevator in our building since December 2021. It wasn’t so bad until the building we are attached to also had its elevator become out of service. Living on the fourth floor, means there are six flights of stairs to climb every time I leave my home. While exercise is good – especially for me since I hate doing it- climbing all those stairs over an extended period makes my body revolt in several unfun ways. When you’re in your fifties living with cancer, it definitely doesn’t help.
At the end of summer, I was in a world of pain. My back, hip, and leg hurt terribly, and my whole lower leg was numb. We were pretty sure it wasn’t a cancer issue, but it couldn’t be ruled out, so I was sent for a few MRIs. I had two pinched nerves. One at the bottom of my lumbar spine and the other at the top of my sacral joint. There are also herniated & bulging disc’s all down my spine. I was sent to a doctor that specializes in pain.
He recommended I undergo an epidural nerve block to help with the pain. At that time, I would have agreed to put bamboo under my toenails if it would help. I have gotten some relief though I still have numbness in my lower leg, which may be permanent. Time will tell how long that block will work. Would I repeat the procedure if I needed to? ABSOLUTELY NOT. That procedure was the worse thirty minutes of my life. God bless those who do that regularly because I will never do that again. If you’ve been following me for a while, this was worse than my acupuncture experience.
I was looking forward to the holidays. It would be My Beauty’s first Thanksgiving and Christmas. I know she won’t have memories of this holiday, but I sure will. She liked all the food – Turkey, Green Beans, Stuffing & Mashed Potatoes.
We Make Plans & The Universe Laughs
I traveled to Florida the Friday after Thanksgiving to see Oldest and his family. Oldest recently had a baby boy with his girlfriend. He is two months younger than My Beauty. I hadn’t been in Florida for 4 hours when I found out my Dad had a bad fall. Dad fractured the top of his femur near his hip. This wasn’t good. Dad already has two artificial hips. He didn’t just fracture it in one place; he had a fracture on either side of his femur. I would realize later that my life, in that moment suddenly and significantly changed. Since I wasn’t in NY, my Mom was alone until I got back. In my absence, my son helped out as much as he could. I wasn’t sure if Dad would have surgery or how long he would be laid up. Regardless, I knew I would be tied up with my folks for a while. Surgery had been declined. The doctors felt trying to heal it on its own would be better in the long run.
I stayed with my Mom for 28 days until Dad was back home. I can’t even put into words how stressful that time was.
Everyone Needs An Advocate
Growing up, we believe our parents were superheroes that could do anything. As we grow up and become adults, reality slaps us back to earth and the realization that one day we will have to be responsible for our parents hits us like a ton of bricks. Those bricks came down on me hard in the form of panic attacks.
After a week in the hospital, he would be transitioned to a physical rehabilitation center. It seemed simple enough; until we were told we had to choose where he would go. We were given four double-sided pages of options. However, not all of them take the same Insurance plans. Of course, the one place we wanted him to go to didn’t accept the Insurance he had. It became evident that I would have to take the wheel and do what I had to so he wouldn’t end up in a nursing home situation. The only option I had was to switch my father’s health insurance plan to get him into our preferred rehab center.
Insurance Is Complicated
I contacted the ONLY person I knew could help with this – Hector DeSessis. Hector has a long-standing relationship with my folks concerning health insurance. He also helped me choose a Gap plan that would be right for me. Hector found a plan that not only would the rehab center accept but was a better value overall and offered more benefits. The best part was that this new policy would be effective on December 1st, the day he was going to be moved to rehab. This all happened on November 28th. When I say Hector was a miracle worker, He is brilliant.
Thankfully, it all worked out. Dad spent 20 days in rehab getting the care and physical & occupational therapy he needed in order to come home. Every day, twice a day, Mom and I spent time with Dad. We ensured he had fresh water, helped him shave, and made sure he had whatever he needed. Even if we didn’t spend the whole time talking, he knew we were there with him and not alone. Finally, on December 23rd, Dad could finally get discharged. It would continue to be a relatively long recovery process while his leg continued to heal. But all that mattered was that he was home for Christmas.
A Magical (unconventional) First Christmas
2022 wasn’t a typical Christmas. There were no homemade cookies or a Christmas Tree. But that’s not what Christmas is supposed to be about. I put up some Christmas decorations to make the house feel more festive. I put up decorations that would be easy to add around the house and take down. I wanted Dad to come home to a festive environment, not to mention this would be My Beauty’s first Christmas!! Everyone was excited to see her and watch her open presents! This child is always happy and has the biggest grin ever. It melts my heart every time.
My Beauty’s 1st Christmas 2022 with Mommy
It’s astonishing to me that her first birthday is aroud the corner! She’s walking (more like running) and ‘talking’ to everyone, including her stuffed animals. I get the most joy seeing her happy smiling face and spending time with her.
Back To Reality
Aside from the issues with my back, I’ve recently been having issues with my blood pressure. Apparently, 150/110 is frowned upon. All the tests I’ve had in the last year indicate all is well with the mechanics of my ticker. The next step is seeing my pulmonologist. I will have a V/Q Test scheduled. My regular scans will be in March, and I have a separate MRI later in March at Sloan Kettering to check on a cancerous lesion in my kidney.
I sincerely hope everyone had a joyous holiday and stayed as healthy as possible.
Look out for newsletter updates soon…..
Did I mention that My Beauty has an affinity for The Grinch?? She’s a girl after my cold black heart!
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I’ve never used my blog for political purposes. Today, that changes.
Today, I spent three hours with my granddaughter. I truly cherish every second I’m with her. Her curiosity, smile, and watching how she processes information even at this young age of (almost) ten months is an irreplaceable gift.
I couldn’t help but think about what is at stake regarding her future. Her ability to access healthcare and total autonomy over her body. The person she chooses to love and build a future with could potentially put her in danger. These are issues I never had to worry about growing up. These are issues NO ONE should have to worry about.
I’m not overstating when I say freedom is on the line with tomorrow’s midterm elections. People are running for office with no business in politics, let alone making decisions for the country. Most of us know this. To some people, what matters is a warm body getting elected simply because they agreed to regurgitate what others tell them to do.
I cannot emphasize enough how important every single vote is in tomorrow’s midterm elections. Don’t waste your voice through your vote. Don’t allow politicians to take personal or family decisions away from the people who should be making them.
There is a cancer running rampant right now in this country (and I don’t mean Covid). This country must be put back on track before it metastasizes and we run out of options.
If you haven’t already- get out and VOTE.
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