Howdy Y’all

Hi warriors, 

It’s been a minute. Let’s be honest though, is anyone surprised? I always forget the absolute toll the start of the school year takes on me. Now, I’m not going to lie: there are going to be some updates here that aren’t that pleasant. That’s just how life is though, isn’t it? You can’t appreciate the good, the joy, and the beautiful without suffering and pain. As a cancer patient though, I’m quite over the suffering and pain. More on that later…

Today, I’ll start by sharing where I’m writing from… the air! Aka the plane. This is the absolute first for me, as I’ve always suffered from extreme motion sickness. Poor grandma (and many friends) have spent many days holding back hair, pulling over the car, and helping clean up Julia’s clothes due to vomit. This tiny accomplishment of being able to look at a screen on a moving object (without any sort of anti-nausea medicine) is bringing me much joy. It really is appreciating the small things that brings the most joy.

I’m in the air today flying to Houston. I’m headed to Houston for two reasons: 1) the ultimate IBC meetup, and 2) to be seen at MD Anderson. MD Anderson is a private hospital that is dedicated to cancer care. They are marketed as being the best in the world, offering many specialized clinics and clinical trials. In the world of cancer, MD Anderson is often seen as a “last stop” for cancer patients with rare or metastatic disease.

Health Care Inequities

I know people who have spent their last dollars and days to get care at MD Anderson. A few friends from all over the country have even moved to Houston sometimes for months, sometimes forever. Hanging onto hope that this hospital (staffed by mear humans) would provide a magical cure for their specific cancer. Help them beat the odds, meeting some artificial goal of a long life or seeing a special moment in their lives. To be fair, I have seen quite a few real successes (or some would call miracles) come out of MD Anderson. It’s not snake oil. In my mind, traveling for quality medical care is absurd and wrong. Alas, we live in America, a land full of inequities, including in receiving specialized medical care. 

While it sounds like I’m bashing MD Anderson, I’m truly not. I’m bashing the American healthcare system. The inequities it causes by its inherent nature of profit over people. This is across the board at every healthcare system in America, even at my local beloved nonprofit hospitals. The way America pays for healthcare is absolute garbage. It leaves those who are at the highest risk of dying or becoming disabled, to die and have disabilities. It’s trash. It’s not fair. It’s simply not right. This is a hill I will 100% die on, just hopefully not soon. 

Why MD Anderson then?

Education on the inequities in healthcare access aside… Why am I headed to MD Anderson when I’ve been beyond happy with my local doctors in Omaha? Well warriors, I think it’s time I see the specialist. Which is terrifying. It’s time, because I’ve had a few new symptoms that can’t be explained. A few scans without clear answers. Just one toos many “medical things” that have made my overactive medically-educated mind (and thus intuition) too nervous to ignore. 

Remember our dear friend “neck inflammation”? That which I fondly named “Sandy”? Sandy continues to come and go with no explanation. I’ve laminated on Sandy in the past. My Omaha doctors aren’t sure what she is or where to send me locally to find out. It’s a mystery that I’ve been told to just accept. “Watch and wait” is what it’s called in the cancer world. 

I could have lived with just Sandy. After many visits, scans and blood tests, Dr. Wells, Nurse Stacey, Dr. Figy, both my therapists, and oncology psychiatrist got me to accept that I have now graduated to a point in cancer care where I live in the anxiety-filled land of “watch and wait.” With the help of my hand-curated Omaha medical team, I was still able to live life to the fullest. I had accepted living in the world of “watch and wait.” I was okay with the unknown. I was alive. 

COVID 2.0

Then the disease that helped fund a lavish lifestyle during travel nursing got me for a second time. For the second time in my life, I was diagnosed with COVID at the end of August. It turned me into Will Smith circa Fresh Prince of Bel Air (this time without the extra money though) and my world was turned upside down. 

After my quarantine was over, I headed back to work. Due to a multitude of issues, there were quite a few days where I didn’t get a break. I also was wearing a mask as this is the recommendation by the CDC to help curb the spread. These things, coupled with continued cancer treatment, landed me in the ER in mid-September.  

COVID, much like a lot of cancers, is one of the great equalizers in this world. It operates by its own set of rules that seems to not follow any science out there. It’s one of the more complicated and intricate viruses in recent medical history. I witnessed this first hand working in the ER during the height of COVID. Its victims don’t just include people with multiple comorbidities like cancer, but healthy young people as well. People my own age or younger, seemingly healthy one day and then dead within a week or less. The big collective trauma for those (including myself) on the front lines during COVID is that it seemed to follow no rules of science. It didn’t matter who we gave the highest and most intricate level of interventions to; it seemed everyone died and everyone died quickly.

Brain MRI 

Because of that trauma, getting me to the ER was such a feat for dear oncology nurse Stacey. I didn’t realize how deep my personal medical and COVID trauma was until she told me I had to go in. I really did not want to go, because I didn’t want to get on the COVID train whose last stop was a makeshift morgue. I still don’t know how Stacey did it, but she got me to go in for a cardiac and blood clot work up. That workup came back sort of inconclusive. No real explanation for why I was having increased heart rate, shortness of breath, generalized pain, and memory issues.

After getting out of a feared hospital admission (on a Friday night no less), I had quite the interesting weekend. Interesting because of a myriad of symptoms, increasing in severity and concern as the hours ticked on. I exposed my sisters, friends, and husband to some really scary mental symptoms including brain fog, memory loss, and something called “word salad.”

Word Salad

While word salad is one of my favorite medical terms, it’s truly a terrifying horror symptom. Defined by Merriam-Webster as a string of empty, incoherent, unintelligible, or nonsensical words or comments, it’s only seen in medicine when someone is having a severe mental or neurological crisis. 

As the weekend moved on, inching closer to Monday morning and another week of work, I knew cognitively I was expressing this symptom of word salad more and more, but I couldn’t make it stop. It was the worst on Sunday night. Mitch and I spent an hour in the garage with me saying random words at him, while both of us got more terrified about what was going on in my brain. Something was very wrong. 

Eventually Mitch convinced me to just go to bed. Monday morning came around and I was seemingly back to normal. I went to work without saying a word to most of my co-workers. The school principal and the two other nurses in the district knew I had been in the ER on Friday night for COVID, but I kept the severity of the symptoms to myself. The ER had cleared me to work so I was going to do just that. 

After a successful two days of work I reached out again to our hero in this story, Nurse Stacey. I informed her of what happened over the weekend, which unsurprisingly led me straight to MRI to get a brain MRI. Again my medical team in Omaha worked overtime to get me on the schedule. I was able to get the MRI (with and without contrast) the next day at 4:30 pm. If you work in, or are intimately involved with medicine, you know that at least a few people worked overtime to make that appointment happen. I’m very grateful for the medical team who made it possible. 

Unsettling Results

That night my brain MRI came back with some unsettling results. The report read: 

“Punctate focus of T2 FLAIR signal abnormality in the left frontal lobe, nonspecific, may be secondary to prior insults, though may be seen with migraine headaches in patients of this age.”

Well shit, I thought. Something was found. It doesn’t say cancer, but it doesn’t exactly say not cancer either. The comment on my age is what got me. While yes I am young, cancer doesn’t discriminate (especially with inflammatory breast cancer). Over 40% of patients with inflammatory breast cancer develop brain metastasis, regardless of age. Unfortunately, since IBC doesn’t have an ICD10 code (or billable number for insurance/medical coding), there was no way to know if the radiologist who read my scan knows that I have this rare, complicated disease. I have no idea if he compared it to my brain MRI I got in January 2022, because he didn’t put it in his report. Seeing as another hallmark of IBC is how weird IBC tumors present, I got really worried. 

I saw Dr. Wells the next day after my MRI at 3:30 pm. Again, she and nurse Stacey were queens to get me in on my schedule, so I had to take the least amount of time off work as possible. Dr. Wells was very confident the brain MRI was not showing cancer, but she was unsure what it was. She believed the radiologist, a radiologist I don’t know.

It is time

Sitting on that knowledge, knowing what I do about this horrific deadly cancer, I decided it was finally time to take the plunge and see the experts. To save time and gory details of hours on the telephone/telephone tag, I landed an appointment at the Inflammatory Breast Cancer Clinic at MD Anderson on Monday, the day after the Ultimate IBC Meetup Conference is over. 

The patient navigator at MD Anderson said I would have to be okay with spending up to four or five days down here finishing up whatever tests the doctors want. I’m not super in love with that idea, as it’s even more time off work, using up the rest of my paid sick days, but it’s time I see the experts. The doctors who only treat this rare disease, day in and day out. The ones who can truly put my mind at ease.

I’m hopeful this is a one and done appointment. I’m willing to accept the reality it might not be. I’m just out here doing my best to stay present in every moment while I’m in Texas, squeezing in some extra fun with friends and being on my own, while I wait to meet yet another doctor to add to my arsenal of cancer care. I was so confident I’d never be an actual MD Anderson patient, but I guess the world, universe, God, whatever you believe in had different plans. 

I used to be one to ask for prayers/thoughts for what I wanted to have happen. I thought if enough people prayed or thought for good outcomes we’d somehow magically change the narrative, but I’m realizing now that’s not possible. It’s “magical thinking,” as my therapist queen Mary Ellen says. Instead, I’ll ask for prayers/thoughts for strength to accept what is, whatever that may be. Even if this is all nothing and Dr. Wells/Nebraska team is right, it’s still going to be extremely difficult for me to accept, because this has been extremely traumatic for me. 

It’s traumatic for not only me, but for my closest family, friends, and cancer family. In the last month and a half, I’ve become acutely aware of how fragile my health still is. How close I actually was, and may still be, to dying. It’s garbage. It’s trash. But it’s reality. A reality that is actually real for all of us in this world, because death comes for us all some day (but that’s a blog for a different day). For now, I’ll just be out here vibing in the unknown. Attempting to fill my life with not only truth and acceptance but joy and love. Living in a way that I find the most meaning and purpose in.

I hope you can do the same today too, dear warriors. And as always… have a magical day. <3