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.

Just When I Thought I Was Out….

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

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!

When You Wish Upon a Star – My Magical Month of May!

May was a BUSY month! So many amazing milestones were reached I’m still not sure if they all happened. Every day I look at all the pictures taken over the last month & I thank the universe for allowing me to be a small part of it all.

It all began with double graduations from the University of Rochester for my son & his fiancee. We weren’t sure what would happen thanks to Covid-19 until a few months prior. It wasn’t exactly ideal but what matters was I saw them both in their caps & gowns, heard their names called & what every parent dreams of; watching them both walk the stage to receive their degrees. Well, degree covers. There were five ceremonies in all spread out over three days. The big commencement & two-degree major ceremonies for each of them. All streamed live for parents and loved ones to see.

The Graduates

Immediately after the pomp and circumstances, we switched into wedding mode. They chose to get married in my daughter-in-law’s home state of Oregon. I don’t know how they planned the wedding while attending their last year of college AND working. All the while not even sure it would all happen due to all the restrictions and rules for the pandemic. If it weren’t for her parents, it would have been a nightmare for both of them. When it comes to inlaws, Adam won the lottery.

Rehearsal Dinner

They had a beautiful day weather-wise. Their ceremony and reception took place outside. Making for an ideal setting. Clear blue skies and warm temperatures all day. Actually, it was damn hot.

If it had been a contest of who cried more, Adam won. Hands down. It filled my heart to see all the emotions he was experiencing. There was no doubt just how much in love he is. The bride was stunning. She glowed with happiness as her father walked her down the aisle.

After the ceremony, there was a lovely dinner, toasts to the bride and groom, something called The Shoe Game that involved all the wedding guests and llamas. Yes, llamas.

Llamas Anyone?

When I returned home, I was given the all-important task of babysitting their five cats and dog. That week I was literally a cat herder. No easy task I might add.

The newlywed’s honeymooned at Disney World in Orlando, Florida. They had a fun and relaxing time. I won’t lie, I was a lil bit jealous.

Epcot

When I began this blog, my biggest goal was to see Adam graduate from high school. If someone had told me I’d be there for that and so much more milestones in his life I would have laughed and laughed. I never let myself hope for anything beyond the one goal I would set for myself. I was too afraid of hoping for things I’d never be part of. Cancer forces one to not look too far into the future no matter how optimistic. I don’t say this to put anyone off or to be a downer. I say it because of how grateful I am. I must acknowledge how incredibly lucky and appreciative I am.

Which brings me to share, with gratitude this last bit…

Just in case anyone doesn’t understand the photo above, these should do the trick!

I’m going to be a *gulp* GRANDMOTHER!!

Truth be told, I’ve known for a while. This has been the HARDEST secret to keep. Those that know me, understand how physically painful this was. I was SWORN to secrecy until other family members were told. Nothing is worse than finding out about important life events than on the internet. So, how long have I known, you ask?

I have a magical new goal!