Metastatic Breast Cancer

The End Of The Year Took A Sharp Left Turn

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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.

1st Thanksgiving
1st Thanksgiving

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!

Vaccines, Shots and Scan Results

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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

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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.

Just When I Thought I Was Out….

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Last July, the last time I published a blog post, I talked about how I was ‘breaking-up’ with advocacy. Between the pandemic and the death of my partner in crime, Tori Geib, I didn’t have the stomach for it the way I did in previous years. The constant (it sure felt constant) petty drama between advocates was also pretty draining. In addition, my son graduating from college, his wedding, and the announcement of their first child. My priorities had shifted.

Since January 2022, my life has revolved around my perfectly perfect beautiful peanut of a granddaughter, Piper. I had no idea my cold black heart could love a tiny person I didn’t personally birth as much as I love her. She smiles SO big I literally could cry. I shouldn’t know her and for reasons I may never understand, the universe had other plans. I’m super cool with that.

Kathryn & Beautiful Piper

But I digress…..

Then on August 8th, they pulled me back in. An iconic celebrity, Olivia Newton-John, died from Metastatic Breast Cancer. It was widely known that she had been diagnosed in 1992 with breast cancer. She went through all the standards of care – mastectomy, chemo, and reconstruction. She was considered ‘cured’ (insert eye-roll). In 2013, she discovered cancer had spread to her bones. Specifically, her shoulder. Then in 2017, metastasis was found in her spine. It was then, in 2017, that Stage 4 was mentioned, but let me be clear – Olivia Newton-John was diagnosed with Metastatic Breast Cancer in 2013. The same year I was diagnosed. However, when she died, the media reported she had a 30 yr (choke) ‘battle’ with breast cancer. I had expected to see battle language from the media but what I didn’t expect was all the inaccurate information that followed. Dame Olivia did not have active breast cancer for THIRTY YEARS. There were 21 yrs that she had no evidence of disease – meaning she was not in active treatment. It was only in 2013 when cancer metastasized to her shoulder and again in 2017 when it spread to her spine did she have active cancer.

The media reported that she had ‘spine cancer’ or she died from breast cancer when it was metastatic breast cancer. Words matter here because breast cancer that doesn’t leave the breast isn’t lethal. When it spreads to a major organ like bones, well, then it’s incurable. It’s Stage 4. There isn’t a Stage 5. Reading all of this inaccurate information made my head want to explode. I couldn’t hold it in. I couldn’t stay silent. So, I took to Twitter and created a thread of five tweets to make some points clear. I had no idea that almost 15K people would end up seeing that thread or that it would be re-tweeted 60 times.

https://twitter.com/stickit2stage4/status/1556765429112229890?s=21&t=JdoiMs1I29y2aAqZnWq_xA

I definitely didn’t expect to get an email from journalist Beth Greenfield, Senior Editor at Yahoo.com on August 10th. She saw my tweet thread. She wanted to talk to me. It took me 3 seconds to email her back. I am no stranger to interviews. I know that sometimes what I want to be included and published doesn’t happen. We talked later that day. She truly understood where I was coming from because she had lived through a breast cancer diagnosis. I felt really good after our conversation. While I wouldn’t know for sure until I read her article, I was confident that she wanted her readers to understand what I was trying to convey on Twitter.

The article came out late on August 17th. I didn’t see it until the following morning via a tweet from a friend and fellow advocate Jo Taylor. I am super proud of this article and cannot thank Beth Greenfield enough for writing it. What I am most proud of is that she included the organizations I told her about that the public should seriously consider if they want to help further research for metastatic breast cancer. Those organizations are: BCRF, Metavivor & The Cancer Couch Foundation

I haven’t changed my mind about actively advocating. While I did get worked up over this ridiculous confusion about metastatic breast cancer, I don’t have the bandwidth to get back into being an advocate and traveling full time. I plan on spending time with family, my husband and (as much time as possible my kids will allow) with Piper.

If you missed it, you can read the article featured in Yahoo Life

Dear Advocacy, It’s Not You; It’s Me

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At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

The Quiet Time

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Most mornings, I am the first one awake. I like that. I have a routine that I follow. I go into the kitchen, turn on the Keurig, put hazelnut creamer in my coffee mug, and while the coffee is brewing, I prepare Bella’s breakfast. The first of her several small meals throughout the day. I grab my coffee, my meds, an “after breakfast” cookie for Bella, and head for the couch. While I check my phone to see what I missed overnight, Bella & her full belly snuggles up next to me & falls asleep.

Morning puggle snuggles

This quiet time is my favorite time of the day. The only sounds that I hear are the clock’s ticking on the dining room wall, the soft whooshing of the traffic below us & Bella snoring. It’s peaceful & relaxing. My Twitter feed is full of tweets about what’s going on in the world & updates from friends sprinkled in between them.

It’s ironic how the brain triggers the memory of events that happened in the past. Songs, smells, places, reading a book, or specific dates. It happens even when we don’t mean to or even want to, depending on the memory it triggers. That happened to me this morning. Not just one memory, but two.

These memories are both exceptional, each in its own way. They are separated by fifteen years. I can recall every last detail of each memory. When I think of them, it’s as if I am back in that moment again. I hear the sounds, what was happening around me, and who was there with me. I even experience the feeling as if it’s happening for the first time. I don’t always remember them in the order in which they occurred. However, one always triggers the other. It’s like being in a time machine but without the “Back to the Future” Delorean. Does this happen to everyone?

This morning it happened backward. My memory placed me back in one of the many waiting rooms at Memorial Sloan Kettering in Manhattan. I was waiting for the nurse to call me for the first of four scans I was having. I was sitting in an armless chair; the bright sun came through the windows on my left. Above me, in the corner of the room, the TV was on. Good Morning America was on. A couple won a contest to be married, live on their show. The hook was that John Legend would also be there to serenade them with his wildly popular love song: “All of Me.” Later that afternoon, I would be in the exam room sitting next to my Oncologist and, on the other, my husband. She read the results of my PET scan. It was the first one I had after I started treatment and the first time I heard: No Evidence of Disease. I was confused. My doctor put her hand on mine, looked me dead in the eyes, and said, “The cancer is not detectable. The Aromatase Inhibitor is working. This is the best possible news.” It took a minute to sink in. I cried & laughed at the same time. That was seven years ago.

GMA 2014, Courtesy of ABC News

I will always be grateful for that memory. It’s probably the only positive, happy experience I’ve had living with cancer. I had hope again. Hope that cancer had taken from me. That feeling is what triggers my next significant memory. It was a snowy day in 1999. I had the ultrasound that every expectant parent looks forward to. I saw my son, for the first time, cramped in my belly. He looked so chill. The tech pointed out his tiny little finger buds, his spine, his legs. She was reassuring that all was well. Did I want her to tell me the sex? she asked me, YES, I wanted to know. She moved the wand back and forth over my stomach. “There it is,” she said. “You’re having a boy” The rest of the story can be read Here

As I sit here remembering these two events, I think about what’s to come this month. My son & future daughter-in-law are graduating from college. They will have commencement ceremonies this year. While the No Visitor policy is still in place, I’ll be watching the live feeds. The following week I will have fully realize a dream I never imagined I would have the honor to attend; my son’s wedding. I am so looking forward to watching his bride walk down the aisle to exchange their vows.

I adore these two

I’m still trying to wrap my brain around all of this. When did he grow up? Most parents who get to this point in their children’s lives want to turn back time to when their kids were little. I honestly don’t. I cherish this time right now as he builds his life with his soon-to-be wife. They both have accomplished a lot in the last four years. I couldn’t have imagined a better future for my little pup.

My lil pup

At the last minute, I chose to have my PET scan last Friday. I wasn’t going to do any significant medical stuff this month as I didn’t want anything to put a cloud over these monuments occasions, but in the end, I knowledge is power. I didn’t post anything about it or the “look at me; I’m having a scan” picture on social media. Many of my friends are dealing with their health that it just didn’t feel right. I realize it shouldn’t stop me from talking about what’s happening with my own health. It’s separate, but I guess I’m becoming more empathetic now that I’m in my 50’s. Is this what happened to the Grinch?

May 2021 will be the most fantastic month. I am going to take in every second & enjoy it to the fullest. I feel so, so fortunate, and I thank the universe for keeping me No Evidence of Disease for now.