advocacy

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!

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.

And God Laughs

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I should be sleeping. It’s 2:33am. I have to be up in four hours.

I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.

Today is my day to share my reason.

Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.

(This is the most unnerving coincidence – I know God is laughing)

Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.

Facebook Memories Suck

Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.

Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.

Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.

It’s not a religious issue – It’s a personal choice.

It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.

I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.

I’m livin’ the dream, Melissa.

Livin it for you babe.

Two hours until I have to be up…..