How We Got Here
The Nitty Gritty Details from the Beginning...
Chapter 1: Early Detection Matters
In 2002, as a high school senior, a benign lump on my thyroid my pediatrician was monitoring turned into a rare thyroid cancer (cribiform-morular papillary thyroid cancer). It puzzled pathologists all the way to the Milan Cancer Institute (at least a part of my body got to jet-set to Europe). At first it was linked to this genetic disorder, and then that…possibly, and depending on whom you asked. We initially put the pathology questions aside and proceeded with my treatment plan. Because we caught this as early as possible, treatment was minimal by comparison to others; thyroidectomy, one dose of radioactive iodine, done.
By the spring of that year, however, something in my body just didn’t feel right, and there was a possibility noted in the thyroid pathology that could potentially be linked to a genetic gastrointestinal disease called Familial Adenomatous Polyposis (FAP). It was a disease that my family had no history of so the assumption was that we would eliminate the most serious potential culprit. I am so thankful that they took this approach. When I woke up from the test, the diagnosis was confirmed by thousands of colon polyps — a polyp party — in my colon; it would need to come out. Six weeks before my freshman year of college, I had a complete colectomy. If these steps had not been taken, I had a 100% chance of getting Colon Cancer by the age of 35-45. Instead, however, the major risk was eliminated and I have a procedure every 6 months to remove anything questionable.
Chapter 2: Find the Humor Where You Can, Rave the Tatas
In 2014, I felt a lump on my breast and I wasted no time calling my primary care doctor. Self exam ladies (and gents too really)!! I was seen right away for imaging and a biopsy. I knew something was wrong before they even called me with the news - on my 30th birthday (yup, true story) and I was diagnosed with breast cancer (grade 2 ductal carcinoma ER+/PR+/HER2-). Because I do not have the BRCA gene, I followed the advice of my doctor and had a single mastectomy and breast implant in what I now affectionally refer to as my party tit, or righty tighty, lefty loosey depending on my mood.
It was, however, the first treatment plan that involved both surgery and chemotherapy. I knew the process was going to be long, and my thyroid cancer would feel like a breeze comparatively. I wanted to find the fun and the humor where I could. That's probably what inspired the Rave the Tatas day party prior to surgery, complete with a boob cake (which I proceeded to motor boat). That's also the energy I was determined to carry through treatment. I had a great summer in spite of it all, and we threw a little "party" in the infusion bay on my last day of treatment. The pink feather boas and Shirley Temples were a whole vibe.
Chapter 3: Trust your Gut, Be the Squeaky Wheel
As my breast cancer treatment was wrapping up, I was still continuing my 6 month GI screening procedures from my FAP diagnosis. It was around this time that one of these procedures triggered a bout of pancreatitis. Now, I've had these here and there as a complication, managed with a short term liquid diet and pain medication. This time, however, and perhaps simply because my body was still recovering from breast cancer, things escalated. I was diagnosed with acute necrotizing pancreatitis and spent 3 weeks inpatient. My body just never felt the same after that.
I was getting pain and pancreatitis outside of procedure complications, seemingly unprovoked about every 3 months with no real secondary diagnosis. I attempted to get a second opinion once, but was assured that my team was the best there is and if they didn't see something, all they could do was symptom manage without an additional diagnosis. I didn't push any further, and perhaps I should have. This was my first big lesson in self-advocacy. You are not bothering your doctor when you are being persistent, and do not be afraid to be the squeaky wheel until you feel like you are being heard. The toll the chronic pancreatitis was taking on my body and mind is really most obvious to me in hindsight.
Chapter 4: Don't Put it Off, and Sometimes Progress Isn't Linear, Take Pride in the Small Victories
It wasn't until 2020, during Covid lockdown when one of these episodes happened out of state that I finally got some clarity. Out of state often means out of network care. I ended up at an emergency department in Long Island, NY without any access to my medical records. This meant all new scans and blood tests. It was in this CT scan result that the radiologist noted a lump in my pancreas that could be fluid due to the pancreatitis, but could not be ruled out as a tumor.
And yet still, I did not push my doctors for follow-up immediately when I got back home. This was partly avoidance on my part, but also the difficulty in accessing care during Covid peak. I did not have any check-in appointments scheduled with my care team around this time, and did not prioritize dropping off these scan results for them to review. It wasn't until a few months later, with my next bout that I couldn't push it off any longer. I went into the Emergency Department as I normally would, but this time brought the CT scan results with me. I was immediately admitted for treatment and additional testing. This confirmed that the New York team was correct in identifying a tumor. It was Pancreatic Neuroendocrine Cancer (grade 3 pT2N1, positive for Chromogranin and Synaptophysin), and the treatment was going to be aggressive, invasive, and isolating (during the height of Covid protocols, much of it had to be done inpatient and alone).
While that was the most difficult 2 years of my life, it was also the most empowering. I learned to speak up for myself, grow in my self-awareness and articulation of how I am thinking and feeling, not to be ashamed of the bad or hard days, to be vulnerable and open with family and friends, lean on others, and maintain my determination to celebrate of the good. I am all the better for it.
Chapter 5: Learning to Be Open to Help, Learning to Ask For Help, Helping Others
I had one recurrence of PNET in the fall of 2022 that was fairly easy to treat with an additional few rounds of radiation, zapped that one pesky lymph node back to normal size. I've learned not to fear "check under the hood maintenance" as I affectionately call it - mostly procedures to remove gastrointestinal polyps. But, this was my first recurrence of anything cancerous, and the first time something was inoperable with a goal to "shrink", not "cure". That in itself was a mental shift; but somehow, I feel more content and at peace with all this than I ever have. It is what it is. While I've been maintaining my 3 month scan schedule since, and living it up in between (like really, living it UP), my last scan could not rule out something cooking in there, and an MRI confirmed it the day after my 40th birthday. (Here's a tip - refuse to do any scans just before or on your birthday).
At this point I don't understand with these odds how I have not won the actual lottery yet. In all seriousness though, I feel so thankful that I have the team that I do, and that everything is caught so much earlier than it could be, or often is for others. I know how lucky I am, and I do not take that for granted. My doctors have recommended me for a radioligand treatment (RLT) called Lutathera. Honestly, I am geeking out on the science a bit, so I have included some of it here. It has been used for a while to treat late-stage PNET patients, mostly overseas. Believe it or not, my stage 4 diagnosis is still relatively early in the context of this particular, hard to detect cancer. Recent studies have shown earlier use of this treatment can lead to remission, not just the delay of disease progression, and I will be one of the first at MGH to get this earlier intervention.
Because of this, Premera Blue Cross Blue Shield is deeming it "not medically necessary". Essentially, I am not sick enough. If I wait until I am sicker, however, the goal will shift from remission to "disease progression free" time (an average of 40 months with Lutathera). While I have just worked with my Oncologist to submit a second appeal to PBCBS (the first was rejected), I will be proceeding out of pocket. One hundred thousand dollars; it's a staggering amount of money, the healthcare system is so broken in the US. Considering asking friends and family for financial help has been difficult for me, but I know it is what I need to do. I think it is a mix of not wanting to inconvenience people, and also wanting to remain independent and self-sufficient. But the reality is by paying out of pocket for treatment, and reducing my hours and pay at work, patients can get behind quickly; I can get behind quickly. This also makes me think about those in similar situations; where some strangers click of the mouse is the difference between life and death, sickness and health, who may not have the support system I do. We have to help them too! I didn't originally intend to include specific charities in my blog, because how can you possibly preference some over others. But, with my desire to pay it forward, I will start to include patient and family/caregiver-focused charities here:
