breast cancer

Pumpkin Spice & Everything Else

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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……

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

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.

Until We Meet Again

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Social Media tends to bond people with similarities. Similar interests, hobbies, music and even illnesses.

Cancer is one of one of those illnesses that bonds people rather quickly. Especially terminal Cancer. We are a group of people that bond over treatments, side effects, helpful hints, advice, support groups and stories of when diagnosis happened.

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Deb Mumma is one of those extraordinary women I was lucky to have met thru Social Media because of our common diagnosis. Right down to the same pathology. We became fast friends and talked quite frequently thanks to our mutual friend – insomnia. There were many 3am conversations when Deb was recuperating from back surgery. If you’ve ever spent time in the hospital you know how difficult it can be to sleep for any length of time.

Deb loved her family. She spoke of her parents and how after as many decades they had been married they were still just as close as in younger days. Her husband, Ron passed after a long illness. It was very clear how much Deb missed him. The way she spoke of their marriage made me a little jealous.

The pride and joy, that always brought a smile into Deb’s voice were her Children and Grandchildren – 12 little ones in all! And of course her pups, Sully and Kiki.

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At Christmas we talked about our kids. Deb worked furiously on two identical doll houses for her Granddaughters. And then there was the trip to Disney World in March. Deb was so excited to tell her Grand kids and witness the expected ‘freak out’.  It was very important to her to make lasting memories as her health began to decline. Although she would never admit it or want to talk about it.

The first weekend in April, Deb helped me with a speech I gave in Buffalo (See previous post dated April 7). She knew how nervous I was and offered to read it and give me the honest criticism I needed. Then on Saturday night we Skyped so she could be my audience and I could practice giving my speech to her. Deb was selfless like that. Even though she had been feeling sicker from chemo and her liver failing she still made time to video chat.

Many of us with Metastatic Breast Cancer are active in some way with advocacy. Deb was no different. Her advocacy was on a local level. It was important for her to raise money for those receiving care at Cumberland Valley Breast Care in PA. Deb even designed a beautiful necklace with the help of a jewelry designer with part of the proceeds going to CVBC and to Breast Cancer Research. “Ribbon of Hope & Tears”. This is one ribbon I can endorse. It doesn’t have to have a pink gem. There are 10 gem options and 3 metal options for the ribbon.

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In the time I’ve gotten to know Deb, we had meaningful conversations and we were there for one another whenever we needed each other without question and regardless of the time of day or night. Deb knew I never muted my phone and that I am a very lite sleeper so the ‘ding’ of my messenger would never go unanswered if she needed to talk. I’m going to miss that. A lot.

“A dragonfly to remind me even though we are apart, Your spirit is always with me forever in my heart”…..Until we meet again Deb. I love you.

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Sharing My Story With Compassion & Choices for the NYS Aid-In-Dying Campaign

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The following is a speech I gave in Buffalo in support of Medical Aid in Dying Laws for New York State

I’m a wife, a mother, a daughter, a sister and an aunt. I’m also a supporter and advocate of Aid-in-Dying laws in NYS and I’d like to tell you why.

In August of 2013, I was diagnosed with Stage 4 Metastatic Breast Cancer. I went to my Doctor for what I thought might have been a kidney infection but an MRI revealed I had a tumor on my spine so large that it was compressing the nerves causing me the constant pain I was feeling. It was 1mm away from my spinal cord. It also showed a tumor in my ribs. It wasn’t until after the PET scan that we learned that the primary tumor was in my right breast. It was shocking, because 9 months earlier I had had a clean mammogram. I was 43 and I had terminal cancer.

There wasn’t a question then or now of how I would treat this cancer. Despite the median lifespan of 36 months, my mind set is that I will do whatever treatment options my Dr’s recommend until I’m physically unable or there just aren’t any more options or clinical trials available.

Having Stage 4 Metastatic Breast Cancer means that I will always be in treatment. I will stay on whatever treatment plan is working until it fails – and by fails I mean that we will see the cancer spreading on a PET scan or I can no longer physically tolerate it. I’m currently on my 4th treatment plan.

To date, I’ve had radiation to my spine and ribs, my Ovaries have been removed and 2 breast surgeries. I receive 3 monthly injections – 1 to increase my bone stability and 2 injections to supress what’s left of the estrogen in my body (estrogen fuels my cancer). I take an oral Chemo pill that affects my blood counts and at times makes me want to sleep for days and I take a few other medications to help with the side effects from the Chemo.

As you can imagine a diagnosis like this sends your mind into overdrive. I began thinking of things I thought were decades away like “I’m going to need a will”, “What do I want my funeral to look like”, “I need a Health Care Proxy” and “Who will take care of my son.”  I had a lot of conversations with myself in bed at night. Of all these decisions I’d have to make, I already made up my mind about one very important decision: How I want to die.

I did a lot of research and asked my doctors a lot of questions. The way Metastatic disease works is that once it figures out how to get around a particular treatment, it continues to travel to distant organs. In my case, it began in my bones so the next major organ will either be my lungs, liver or brain. That’s when it gets harder to treat. Ultimately, I could end up suffocating if my lungs become too compromised.  If my liver fails I’ll be unable to eat and be in horrible pain. If the cancer travels to my brain I will suffer seizures, uncontrollable migraines and could lose things like my memory, sight and speech. Quite frankly, none of that is OK with me.

I remember being with my Aunt when she was in hospice. She had pancreatic cancer. Seeing her so medicated that she was unaware of anything and anyone was awful to me. There were times she writhed in pain and was unable to communicate. She lingered for 2 excruciating weeks. That was not how I wanted to die.

As I look back over my life; my greatest accomplishment without a doubt is my Son. He’ll be 17 this summer. No question, my Son is the reason I do and will continue to do whatever I have to in order to stay alive. He’s the reason I take the Chemo pills that cause me the constant fatigue, headaches and nausea. He’s the reason I happily get the injections that make me cry when they stick the two 3 inch long needles into my muscle that I can feel for days after. And he’s the reason I will keep going and never say “I can’t” or “It’s too hard”

Since my diagnosis we’ve gone on some really nice trips and had some great experiences. It’s all about making memories now. The one memory I’m absolutely positive I do not want to leave him with is my painful and lingering death. I don’t want him to look back and see me in a bed, unable to communicate, medicated and waiting for my body to give out. That would cause me unimaginable stress.

You may have heard or read or even feel that Aid-in-Dying is suicide. I’m here to tell you that it’s not suicide at all.. Aid-in-Dying is about having end of life options. I want more than anything to live another 40 yrs but the reality is that I won’t. I will do whatever treatment options are available to me and any clinical trials I qualify for. I will continue to utilize palliative care team for pain and comfort, but when that stops working; that’s when I want another option.. My terminal illness has taken so much from me already and ultimately it’s going to take my life. I want to be able to choose how I will die when my time comes. I don’t want my illness to make that choice for me. I need my representatives in the State Legislature to make sure I have that choice in the end. If you also want to have a choice, I encourage you to contact your State Legislator so you can be heard.

Thank you.