The Rare Life: Stronger than Ever, Stronger Together

Introducing Michelle

I first met Michelle in person in 2017. We realized that we were both incredibly stubborn fighters who were determined to not let our illnesses define us. We were going to research, advocate, and fight for the highest quality of life we could obtain given our list of medical labels. In 2018, I featured her on this blog with Plan Contingency.

In 2020, she and I launched https://thecortisolpump.com/ , an online resource that strives to be the ultimate reference for all things related to the cortisol pump (complete with an online store if y’all would like to rep that “Cortisol Pump” life).

In 2021, I had the honor of accompanying her to NIH to try to provide a bit of a distraction from her medical testing. I took that challenge a bit too literal and ended up having an official rule put into place after I was taken by ambulance to the local hospital.

And earlier this year, I was able to join her again as she ventured to NIH to receive an update on her pheochromocytoma, medullary thyroid cancer, and her hyperparathyroidism. Below are her words, graciously shared on Clearly Alive Art.

My Second Home

As I lie still in an imaging tube, I feel this is my second home. I am once again at The National Institutes of Health. This is no longer the intimidating experience it once was. I’ve been a patient here for seven years now. I know what to expect. I can anticipate every snag in the schedule. Honestly, I know the routine better than some of the people that work here. 

I was once clueless and scared. I evolved into the invincible young cancer patient, going on runs around the campus. No cancer could slow me down. I’ve watched this hospital change, just as it has changed me.

Now I come back, an older, wiser version of those past selves, and yes, cancer is slowing me down. These days, the NIH feels like an old friend. I recognize the places and faces. I go through the familiar choreography of tests, scans, and clinic appointments.

A Welcomed Distraction

One pitfall of being a research participant is that in the running of the testing gauntlet, you begin to lose your humanity. Instead, you become a barcode on a plastic wristband when you are away from the things and people you love. An effective countermeasure is to bring a loved one with you. For this trip, I was fortunate that my best friend and chosen sister, Amber, volunteered to join me on what I suspected would be a difficult visit. 

I had not been seen for follow up at NIH in over two years. My life has changed dramatically since that time. Amber really is the best support to have in this situation. She’s a fellow medical rarity, and to her, being at our nation’s research hospital is exciting, not scary.

Two Cortisol Pumpers

We both have adrenal insufficiency which we manage with cortisol pumps. We know each other’s warning signs and how to steer each other out of danger. This was apparent when I started to decline at the National Museum of Asian Art. Amber took control of the situation instinctively. She found a restaurant that was safe for my food restrictions, where I could rest, re-hydrate, and refuel with some tasty falafel. What could have been an emergency turned into a fun dinner at Market Pier, watching people stroll by at sunset. 

Amber also helped me plan the meals and did the cooking, which was such a help to me because most days, after fasting for hours, multiple scans, and the freezing walks in the snow to and from the clinical building, I was just too exhausted and sore to do anything but crash. 

The Cancer Update

We both attended my clinical visit with endocrinology and pheochromocytoma research teams. This is where I received the news that my cancer is markedly progressing, and it is now time for systemic treatment. This is opposed to the surgical interventions I’ve had in the past.  I’ve had somewhere around 10 surgeries, but once cancer spreads beyond the initial sites, it tends to come back. 

I knew this day was coming for years. I’ve watched researchers create this cancer drug, I personally knew many of the people in the clinical trials. I saw the benefits and the tragedies. It’s been tested, approved and on the market for a few years now. It could potentially slow or shrink my medullary thyroid cancer. However, I have another cancer those patients did not have, pheochromocytoma. 

I couldn’t get a straight-forward answer from my medical team if any other patients with active pheochromocytoma have used this drug. Their theory is that since both cancers originate from the same genetic mutation, that it could be effective for both types of tumors. What they don’t tell me is that it might not do anything to pheo, or it could trigger the tumors to flood my body with adrenaline and cause a cardiac event. There is no precursor, only educated guesses. 

Though surgical intervention is no longer an option for my cancer treatment, I will need surgery to treat hyperparathyroidism. This is the 3rd part of the “MEN2A Trifecta.” My parathyroids are producing too much hormone, which leaches the calcium from my bones. This not only weakens the bones, but it calcifies my organs. This is unhealthy for obvious reasons, but also, it is painful. I’m not excited about more surgery, but I have to stay as healthy as possible for my two kids, who are just tweens. 

“This means that the pump works.”

This appointment also had some good news. One of the principal researchers wants Amber and I to educate his team about starting and managing the cortisol pump. He has seen me successfully manage my adrenal insufficiency with the pump over the past seven years. He was delighted to speak with Amber who has been using the cortisol pump for ten years. He pointed out to his team, “Look at them, they have no signs of Cushing’s. This means that the pump works.”

Normalizing the cortisol pump at an institution as respected and revered among the medical community as the NIH would be life changing for so many people. Not only would this help those with poor quality of life on oral treatment, think of the children and teens that struggle with compliance and may not take their oral meds as scheduled. This will save lives! It’s a patient advocate’s dream come true. Amber and I were tearing up with joy!

Clearly Alive

As we were trudging through the snow, we had a conversation reflecting on the changes since last time we were here. We concluded that we had something in common. We have both grown more confident in ourselves and our decisions. We trust in our experience and intuition. We’ve learned to be at peace with the things we cannot change and the answers we do not have. We have both seen impossible challenges and we are both coming back stronger than ever. 

Whatever may come, I’ve got my sister to help me through it, and she’s got me to help her. Together we will keep each other Clearly Alive.