cancer

She May Be Gone But She Never Really Left Me

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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.

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.

It’s Not Just Broken, it’s Fractured

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When I first learned of my diagnosis, it was essential to my husband and me that we consider a cancer center that would offer cutting-edge research and clinical trials. We wanted to make sure that I would have every treatment option available. That’s why I am also a patient at Memorial Sloan Kettering. At my first meeting with my oncologist there, we discussed clinical trials. I had even asked if there was one I could get into immediately. That’s how important I felt they were. Now, I’m not as confident as I was then.

Research Matters

While I didn’t know a lot about cancer research, I knew that research would be my only hope to keep on living. I counted on whatever clinicians were currently working on would be FDA approved and for my specific pathology before I exhausted my options. In the beginning, doctors told me I might have 2-3 yrs with the current standard of treatment. I wanted longer – a lot longer. I wasn’t going to accept what was “my fate,” and I became a vocal advocate for metastatic research. I was disgusted with how little money was going to metastatic breast cancer research. Large non-profits known for bringing awareness to breast cancer were mainly focused on preventing and treating early-stage disease. That’s great, but where does that leave me and others like me? It left us forgotten and ignored. We were the misfit toys on the island far out at sea.

After all, we are dying, and research typically moves at a snail’s pace. Doctors were treating us and keeping us as comfortable as possible. Another organization bluntly stated that metastatic breast cancer is just too complicated for research to focus on. Prevention was the key to save future generations, and we should accept that because it was too late for us. Whelp, the joke is on them. Shortly after my diagnosis, in 2014/2015, the first CDK4/6 inhibitor was on the market. Ibrance was the game-changer for estrogen-driven breast cancer. Maybe research wasn’t as slow as I thought. Little did I know.

There Is A Process

Over the last eight years, I have had extensive education in all things MBC. If one wants to create change, one must learn all about what needs to be changed. What I learned was disturbing. Clinical trials are a complicated process. There are four main phases each new drug must go through before getting acceptance from the FDA. Here is the cliff notes version for those that aren’t familiar with them. 

 Phase 1 is for figuring out what dosage is enough without being toxic and whether or not the drug effectively treats cancer in humans.

Phase 2 takes that dosage Phase 1 resulted in and monitors the drug’s safety and possibly pair it with existing drugs. 

Phase 3 tests against the current standard of care. Patients are usually randomized, so clinicians can assess patients by which group they are in. 

Phase 4 tests drugs that the FDA approves. These people are monitored to get better data on side effects previously seen in earlier phases. 

This entire process can take YEARS—five to ten years in some cases. 

Before ANY of that can happen, clinicians need people to qualify for the trials. It’s not just a matter of identifying people with a particular kind of illness. If it were, every clinical trial would be full. Patients must meet a laundry list of qualifications & parameters set by drug companies. The number of inclusionary criteria can be (and usually are) in the double digits. There are also exclusionary criteria that can deem you as not acceptable. That list can be just as long or longer, including previous biologic (cytotoxic) chemotherapy, having brain mets, prior radiation, etc. Scans have to be done, forms have to be filled out, and patients must adhere to a washout period. Patients can not have any trace of treatment drugs in their system before starting a trial. However, this “period” can be as long as six weeks or, in some cases, even longer. Think about that for a moment. Do you know how fast metastatic cancer can progress in six weeks? When the cancer is already active, not being on any treatment can make it progress exponentially quicker. Some patients die during this washout period. Next time you hear there aren’t enough people for clinical trials, remember that washout period.

What I find unacceptable is when clinical trial parameters don’t/won’t make reasonable accommodations for patients who have common and real-world contraindications because “it’s how other locations are doing it.” Even something as simple as how the stability of disease is measured can add another layer of anxiety to a patient participating in a clinical trial. Imagine a patient whose PET scans have previously been monitored due to a common iodine allergy to CT dye unable to have contrast in scan required to monitor the patient in the study. The only way they will monitor if the trial drug is working is with a CT WITHOUT contrast. PET scans are not allowed because the other locations/countries involved don’t do PET scans. Having a scan without contrast is similar to being in a room with the lights off and trying to get around. Something is bound to be overlooked. Even things as simple as blood work for the trial can require the patient to travel to the trial’s location weekly, or in some cases even more, JUST to get a basic CBC Blood test that is common enough to be run at home. What could be a local trip now requires commuter patients to potentially drive hours or find a flight to have a basic lab draw. Sure it’s good and convenient for the trial, but it can be utterly prohibitive for the patients, even if it’s their last hope.

The High Cost of Trials

Not all trials are local to where patients live. They often require regular travel, extended stays in the city the clinical trial is in, which means money for food. The clinical trial doesn’t always cover all of these expenses, so there is a component of financial toxicity that can be very overwhelming on top of everything else. Hotels haven’t gotten cheaper during the pandemic. Many of the free or reduced lodging programs through major cancer centers have stopped during the pandemic making it nearly impossible to find free or deeply discounted lodging for the patient. You would think by now we would be in a place where people could participate in a trial from their home base and have doctors communicate with each other. 

So, what if you’re in a trial that’s located at a different hospital? Who is responsible for your care above and beyond the clinical trial? If you develop a problem while you’re home, do you go to your doctor? I would assume it to be yes. I found that it’s not that simple. Clinical trials can complicate things. If you need a medication for a separate issue, will it kick you out of the clinical trial? Maybe.

In one situation, a patient currently in a clinical trial has all but been dropped by her local medical team. When she called her oncologist about a new infection that is not a side effect of the trial, her doctor told her to let the people overseeing the clinical trial know or go to urgent care. As far as they are concerned, she’s now under the care of the clinical trial 4 hrs away. The clinical trial folks instruct her to see her regular doctors. Palliative care has all but been stripped from her. Imagine having breathing issues with oxygen levels that don’t even reach in the ’90s, and NO ONE is monitoring you. She’s now in cancer limbo. You’d be OK with that. No, no, you would not.

Now when I hear there’s “not enough people for clinical trials,” I think, no shit. Why would anyone enroll? The burden on us patients is too high a cost -financially, physically, and emotionally. It outweighs the benefits. Becoming a human hot potato tossed back and forth between doctors while they cry “not it” is very unappealing.

It’s not a secret that the clinical trial process is broken. Those involved in advocacy have been trying to make changes with clinical trials – making them more inclusionary, basing the washout period on the most recent drug the patient has been on (they don’t require the same amount of time to leave the body). From my perspective, it’s not only broken; it’s fractured. In order to remedy this, drug companies must make clinical trials easier on the patients they need. After all – the goal is to help extend the lives of people, right? Maybe by allowing for basic accommodations, we can reiterate that the data points in studies all have faces, families, and stories that shouldn’t include extra barriers beyond their diagnosis to survive. The following MUST be part of the clinical trial protocol:

  • Provide a clear understanding of the financial toxicity in and outside the clinic to participate in the trial and were to apply for grants or assistance if the clinical trial doesn’t help pay these costs.
  • Make reasonable testing accommodations. 
  • Regular communication between the patient’s medical team to ensure proper care is provided.
  • Have palliative care continue or be available to those that need it.
  • Assign a navigator that patients can address questions or concerns.

I still support funding research; howthefuckever, something has to give for the clinical trials themselves. We are people who are sick that want more time. We do not need to be spending the extra time we are gaining, falling into crippling debt, or pushing to have our humanity acknowledged. 

We deserve better.

Six Month Increments

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It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

I go about my life like everything is normal, like nothing is wrong.

Don’t let them see. Smile. Laugh. Don’t let them hear any worries or fears.

Celebrate all the moments, create lasting memories.

It’s the happiness I want them to have when I’m no longer there.

It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

Those on the outside looking in are scared of what they see.

It could be them as easily as it was me.

Anger is mistaken for bitterness.

Determination is mistaken for anger.

Knowledge is mistaken for negativity.

People I thought were my friends turned into ghosts.

It was easier to dismiss what wasn’t understood.

It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

Making friends just like me. Forming strong bonds.

Watching them get sicker, seeing them die.

Feelings of guilt while being happy, I’m still alive.

Every day I take pills.

Every day there are side effects.

Every month I have appointments.

Every six months, I get scans.

It’s been six years, six months, and 24 days.

I am living my life in six-month increments.

Let’s Talk About Bucket Lists

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Bucket lists.

They’ve always made me itch. From time to time I’ll hear friends talk about making their list or they will post pictures with a lead in of “Well, I checked this (whatever ‘this’ is) off my bucket list.” I immediately think about what happens when they finish the list or worse; they don’t get to finish because their health suddenly takes “that turn” no one wants to happen. Because of that, I’ve associated bucket lists with bad karma and never really put one together. I’m already living on borrowed time, why would I wag my finger in the face of fate just begging to get a clap back?? Ask anyone, I can be a pain in the ass with the whole – “no one’s going to tell me what to do, if I want to do it, it’s happening” but this is a whole other animal and I don’t think I’m ready to poke that chupacabra. Know what I mean?

All that being said. I still don’t have a formal list. Not even a Post-It note. However….

There has always been one thing, just one, that I’ve wanted to do. Even before cancer became my dark passenger. I had even kind of resigned myself to the fact that it wasn’t going to happen.

Then . (holy shit) . It . Happened.

What I consider a once in a lifetime opportunity landed in my lap to go home. Well, not where I grew up, but close enough. San Francisco, California. This was huge. I haven’t been home in 25 yrs. I truly believed I was going to die from this hideous disease without ever going back. The ironic thing is the way it worked out, I missed my 30th High School class reunion by four days but that was OK. Totally, absolutely, 100% fine.

This past Wednesday, two days ago Wednesday, I got on a plane and flew west. It was surreal. It really didn’t hit me until the plane touched down. As the plane taxied in and as I looked out the window, the familiar mountains in the horizon was like a hug to my senses. I cried. I cried the same way I am now typing this on the plane back (looking absolutely ridiculous to anyone that may catch a glimpse of me. I need a damn Xanax)

Oh those mountains

San Francisco Neighborhoods are Awesome

I only told one person I was coming home. There was only one person that was important enough to occupy the precious time I had. I only wish it could have been two. Both classmates. One from elementary/junior high and the other from high school. Unfortunately, Laurie, my dear friend from elementary school tragically died in 2011. That will always be my biggest regret, not coming back in time to see her.

I was able to give the biggest hug to Melanie. She’s no slouch giving hugs back! We had the best time catching up and hanging out. It was like I’d never left. Kind of. We ended up at at a casual neighborhood pub that made the evening even more memorable. We had no idea we walked in on trivia night. We opted out which lent to even better comedy. (We were compared to the old men on the muppet show but in a good way – I swear).

Our “30th Reunion”

It was the most amazing trip. I cannot emphasize this enough. This was everything.

I still don’t have a bucket list. After this week, I honestly don’t need one because I completed it without ever needing to make one.

To those that made this all possible (the whole thing), I could spend the rest of my days thanking you and it truly wouldn’t be enough.

Seriously, Thank you.

The Underbelly – Changing Breast Cancer Narratives

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In my last blog post, I left a link at the bottom of the page to a project that I’m involved in with two of my closest friends – Melissa McAllister and Melanie Childers. (I hope that you clicked thru and took a look!)

The Underbelly was an idea conceived by Melissa and Melanie after many conversations about all the harsh realities that come with having a diagnosis of Breast Cancer and the aftermath of it all. Everyone hears of the “happy celebrations” and “bell ringing” after treatment ends but no one ever talks about what REALLY happens. The issues that can arises after surgeries, the depression, the feelings of isolation, how your body changes with treatments, PTSD and the list goes on. Men and women need to talk about these things and many feel they don’t have an outlet for these conversations or a safe place to go to read about others with similar experiences.

The flip side is what those dealing with Metastatic Breast Cancer live with. The shock of getting a terminal diagnosis, having to be in treatment for the rest of our lives, having to process grief sometimes on a daily basis when another friend dies, the anxiety that comes with every blood test, scan and test.

Factor into all of that there is a discord between those that are diagnosed with Early Stage Breast Cancer and those living with Metastatic Breast Cancer, the three of us wanted to create a community all of it’s own where it would be inclusive of ALL of those that have ever had a diagnosis of Breast Cancer – past or present. The Underbelly would be a place where we could share real, raw stories that were not ‘sugar coated’ or covered in ‘pink platitudes’. And not just our stories – we invite and encourage others to contribute their stories and experiences.

And that’s just what we did.

In August, The Underbelly had a soft launch of it’s website and Facebook page. We were extremely pleased with it’s success and the embrace we received from the Breast Cancer community.

We have now expanded our mission and we have some pretty lofty, although very attainable goals, for The Underbelly. However, to make it all happen we have started a Crowdfunder and have set a goal of $20,000.

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The magazine is not supported by way of subscription fees, which means we get to deliver amazing content to our community for FREE. The costs of running the site are around $2000. That includes hosting, a code monkey on the backend, equipment, and storage.

We’d like to pay back our initial investors (Melanie’s awesome folks) at $2000.

Most importantly, we need YOUR help to fulfill our commitment to providing a source of financial assistance in and for the breast cancer community. Cancer really sucks your wallet dry. Giving women & Men who’ve been diagnosed with breast cancer an opportunity to tell their stories and make a little cash on the side is incredibly helpful, so your support will directly help contributing writers get PAID. Three articles/writers a week @$50 per article for 9 months is $5400.

We also intend to grow and expand our reach and voice in the community, including podcasting and video. For that, we need funds to invest in joining with other projects, traveling to conferences and events, advertising, and sponsoring causes that positively impact the community.  We estimate $5000.

To continue growing and supporting ourselves, we will also be launching a store to generate income and distribute super cool swag, such as bracelets, t-shirts, mugs, posters and other awesome items. $2000 will go toward launching the shop.

Additionally, a percentage of proceeds from certain merchandise sold through our store and this crowdfunder will go to nonprofit organizations who either fund metastatic breast cancer research or directly assist patients in need. 10% of the bracelets will go to the non-profits we’re supporting, around $2000.

And of course, if fully funded, the administrative fees for running the funder itself come to around $1600.

As of last night we reached 16% of our goal!!  Not bad for launching just one week ago today, but we are still a long way off.

We have some pretty nice “perks” that can be chosen when making a donation. There are 6 different Mala Bracelets that represent the 6 Non-Profits that we support and each were designed in their respective colors by our own talented Melissa McAllister. 10% of each bracelet goes back to that NPO.

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Your contribution may support a writer directly, or get your ad in front of our email list, or a full sponsorship of the site for a week, two weeks, or a whole month!

If you can’t give to our campaign, that’s OK!  I still love you an awful lot.

It would be SUPER awesome if you’d share our campaign on your social media platforms or even this blog post and encourage your friends to help us out. You never know who might be looking for something just like The Underbelly, or who might want to share their story!

Also – and this is a pretty big deal, at least I think so. TODAY – well tonight at 7pm EST. I am going to do a Facebook LIVE on The Underbelly Facebook page and broadcast to whoever may be out there to talk about why The Underbelly is important to me and perhaps if some of you pop on and don’t leave me hanging you can even ask me some questions. I’m kind of nervous about doing this but Melissa and Melanie have already done it and today is my turn and I can’t let the team down!!  So, set an alarm – mark your calendar – SOMETHING!!!  Please SHOW UP!!

The Underbelly – Changing Breast Cancer Narratives