The End Of The Year Took A Sharp Left Turn

Missing In Action

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 on her 1st Christmas
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…..

Bless My Black Heart

Did I mention that My Beauty has an affinity for The Grinch?? She’s a girl after my cold black heart!

Get Out And Vote!

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.

She May Be Gone But She Never Really Left Me

It’s almost been a year since I said goodbye to my hero. Tori was more than just my friend. She was like a sister even though she was young enough that she could have been my daughter. That was something we always joked about. In the short time Tori was in my life, we managed to create a lifetime of the best memories together.Wether it was sharing a Starbucks at a convention, letting our inner tequila monster out on a flight or making a video of the hilarious way Benedryl affected Tori there was always side-splitting laughter to the point of tears. It’s been challenging doing life without out daily phone calls.

The Last Bestie Selfie

Friends Are The Family We Choose

More than just being able to see me one last time. Tori wanted to make sure she connected three people she loved dearly. Dan, Elaine and me. We all had our own special friendship with her. Dan and Elaine knowing her longer than me but she had wanted us all to get together. Under different circumstances of course but Cancer waits for no one. I finally met the two people Tori always talked about in her hospice suite.

Dan was kind enough to scoop me up at the airport and bring me to where Tori was. I could see the pain in his eyes. He made me feel welcome – like family. I has already “met” Elain over FaceTime this past September but this was the first time we all were in the same room. It was oddly comforting being with them; an extension of Tori.

Me & Tori at Starbucks, San Antonio, TX

The Missing Scissors

Tori always said she would tell me she was still around after she was gone. She’s made good on her promise. At least, that’s my interpretation.

I have a nasty habit of trimming my bangs. It usually doesn’t end well. Tori has always strongly discouraged me from reaching for the scissors. Well, she fixed my wagon the last time I went for them. They . have . vanished. I know she’s behind it. I kept them in the same spot. I used them in the same place. There is no other reasonable explanation. Now I look like Cousin It from the Adams Family when my hair is down.

There’s also the Ohio State hooded sweatshirt we found in a spot that was not accessible to the public. Don’t tell me that’s a coincidence. Ohio State is her alma mater, and she was a HUGE fan of their football team.

I Know She Hears Me

It may sound odd, but I talk to Tori. Not always out loud, and I don’t carry on a conversation or anything. A few times, I did get caught saying something out loud to her. I explained I was talking to my dog Bella because everyone talks to dogs. It was also easier than admitting I was talking to my bestie in heaven.

So, if I am reticent the next few days or don’t seem present, you’ll know why. I’m Ok. I’ll just be looking for my scissors while talking to Tori with a shot of tequila in my hand.

Pumpkin Spice & Everything Else

All things Pumpkin spice is a popular flavor in our household so I felt compelled to make pumpkin cookies. But is it just me or do Pumpkin Spice Lattes make their appearance earlier each year? I’ve even seen Halloween candy on store shelves last month. August. WOAH! SLOW DOWN!

My Beauty

The most amazing happened this past Tuesday. I was to watch my beautiful granddaughter for an hour or two. Right before my daughter-in-law left, while My Beauty was in my arms, she said Da-Da! Her first word! I thought my heart would burst. It was even captured on video by my daughter-in-law. I will have it anytime I want to see it. I wanted to cry, but I didn’t want to scare My Beauty.

When my son said his first word, I missed it. I was at work and he was with my mom. I will never forget the disappointment I felt because I wasn’t there. There are so many firsts and as parents we want to be there for all of them. Being with My Beauty when she said her first word more than made up for the disappointment I felt all those years ago. It’s cliche to say, but I truly feel blessed for having this moment. Never in my wildest dreams did I imagine I would be here to hear it.

Scan Day

Friday, I’m having a PET/CT. The scans I had in June were questionable so now three months later this scan should give a clear picture of what, if anything, is going on inside my body. I’m just a little nervous this time around because there are a lot of questions that will be answered. I’m not sure I’m ready for some of them.

In preparation, I have created a new playlist to listen to while I sit and wait for the radioactive tracer to make it’s way through my body. When I figure out a way to share it here, I will. Tomorrow, (24 hrs before my scan) I have to eliminate any and all carbs. I cannot chew gum, have candy, drink soda or (worst of all) caffeine. I also am restricted from any kind of exercise, heavy lifting or other strenuous activities. That means I cannot leave my apartment. We have been taking the stairs due to an issue with the elevator. Six flights up and down. Since last January. Unfortunately for me, it’s done nothing for me weight loss wise. Figures.

One thing I haven’t mentioned is that a slow-growing new primary cancer was discovered last November. Renal Cell Carcinoma is the medical term. Broken down, I have a tumor in my kidney. It was small then and because of the location, a biopsy was not possible. It may never interfere with the treatment for MBC. As long as it stays small (less than a centimeter) it won’t be a concern. Truth be told, that little bugger is the least of my concerns.

Also, I’ve updated my website again. If there are any glitches encountered, (and I think there are) shoot me an email or comment on this post to let me know.

Does music help you find your zen the way it does for me? Let me know what some of your favorites are. Until next time……

Vaccines, Shots and Scan Results

When I scheduled my COVID booster, I didn’t look at the calendar. I always check my calendar—this time, I did not. I checked with my oncologist to see if I could get the vaccine before a PET/CT. You can’t, by the way. So when I scheduled my COVID booster, I didn’t know it was the day before my Faslodex shots. I will never make that mistake again. I historically have a complete immune response that includes high fever, muscle pain, bone pain, chills, and headaches. To add insult to injury, I also had them give me the flu vaccine because why not feel the absolute worst I can possibly feel at one time.

I did try to change my vaccine appointment, but it would have pushed it out to the middle of October. I wasn’t comfortable with that. Onward. As expected, I had all the side effects. I also didn’t sleep because of them. I shivered and sweated while watching my new favorite show: Bones. How did I miss it when it was on? My fever reached 102.5, and I contemplated canceling my Faslodex appointment more than once. Hourly, in fact.
When Tuesday morning arrived, I choked down some Tylenol with some very strong coffee and slowly got ready for my appointment.

An Unexpected Surprise

It turns out this wasn’t going to be a normal Faslodex appointment. It was also time to get my Xgeva shot. Xgeva helps keep my bones strong-ish. It’s a small subcutaneous injection but really packs a punch. I get it every three months. Let’s not forget the port draw I wasn’t expecting. Honestly, that is typically the least painful even without numbing cream. We did the Faslodex first. The alcohol they swab your behind with didn’t dry completely. I knew this as soon as they jabbed the needles into me because it burned something awful. The sensation went all the way down my legs. That always makes it feel like the shots last FOR-EVER.

My angry port.

The port draw was next. The nurse jammed the large thumbtack-like needle into my port. She fidgeted with it and told me to turn my head to the left (my port is on the right). She wasn’t getting a blood return. The nurse raised the foot on the reclining chair I was in and released the back, so I was lying down in this chair. Still no blood. The nurse explained she needed to use a medication called Alteplase which would break up the small clot preventing the blood from coming thru my port. I had to sit while the Alteplase did its thing. Thirty minutes later, the nurse could get blood return and draw my labs. Finally, she administered the Xgeva, and I was free to go.

Scan Results

Good news. There were no new metastasis seen and my new friend in my kidney is still too small to be seen. I’m thankful my oncologist agreed to the PET after my previous scans. It makes me nervous to think if she had gone with the June scans, and the inconsistencies, and decided to change my treatment how that would have gone. We agreed to scan again in March.

Dear Cancer, Kiss This!

Let’s Talk About Labels

It seems as though we are obsessed with slapping a label on things associated with illnesses. These labels, regardless of stage, can be isolating to some extent, even off-putting. Other people closely identify with them.

I will be the first person to tell you that cancer is difficult. One size does not fit all, and living through it can fundamentally change a person. While it makes perfect sense to want to celebrate being done with it all and putting it in the review mirror, is it essential to identify with a specific label that constantly reminds you of that experience? And what happens if cancer returns? Does “survivor” still resonate?

So, when did this start, and why has it changed over the years to incorporate a whole month and a specific day dedicated to survivors & survivorship?

To Be Or Not To Be

The term “cancer survivor” was introduced by a US physician Fitzhugh Mullan which appeared in New England Journal of Medicine in 1985. He suggested that survivors included people from diagnosis to the end of life. Distinguishing them from others with a worse prognosis.

Margaret I Fitch, RN, Ph.D, Editor in Chief, Canadian Oncology Nursing Journal wrote an article entitled “Take Care When you use the word survivor in 2019. Fitch acknowledges that there are several ways in which to define the word survivor and that none are universally accepted.

“The word itself likely grew out of the declaration of ‘the war on cancer’, and is connected with a notion of ‘winning a battle’

Margaret Fitch, RN, PhD

Additionally, a small study was conducted in the UK focused on 20 young women (between 18 & 44 yrs of age) that were 1 – 10 yrs post diagnosis. The study acknowledges 23 previous studies that explored how individuals who have had cancer view the word survivor.

The conclusion of this particular study was not unlike the others in that 

“…not all individuals living beyond cancer identify as survivors and that this language may indeed be alienating and harmful for the well‐being of many”

Let’s Try Something New

It’s clear the term survivor does not resonate with everyone who has had a lived experience with cancer. Even those who are no evidence of disease years after completing successful treatment. So, why is it still used? Why can’t we adopt something new that doesn’t alienate anyone while being truthful to everyone’s experiences?

I challenge everyone to stop using survivor and instead say: “lived with” or “living with” cancer. Cancer isn’t who we were or what we are. It’s something that, for whatever reason, happened. W are all doing the best we can to live through or with it.

How do you feel about the term survivor? Let me know in the comments.