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Get Out And Vote!

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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.

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

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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!

January 2022

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!

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.

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.