One day, I was going along just fine. I even thought I was finally doing good.
I had graduated with my master's degree several years ago. I had landed my dream job. I loved what I was doing. I had a good salary, I could finally afford to pay back some of my (incredibly massive) student loan debt. I bought a car, I even was looking at purchasing a house. I was doing all around good...
And then, everything changed.
I had been having really severe abdominal pain for at least three to four days back in March 2016. I was having stomach/intestinal problems fairly regularly, so I thought that my stomach had just not agreed with something that I ate, but this time it was so bad that it hurt to walk. I causally mentioned the pain and how bad it was to my mom, and she panicked: "Oh my goodness, go to the emergency room right now! Your uncle almost died of appendicitis!"
So I begrudgingly went to the emergency room. The doctor there said it was possible I had appendicitis, but he sort of doubted it because my appendix probably would have ruptured at that point. He ordered a CT and ended up diagnosing me with diverticulitis: a really nasty intestinal tract infection that young people aren't supposed to get. He said he would prescribe antibiotics and then I'd be fine.
He walked out of the room, and then came back and stuck his head in the door again, almost as if it was an afterthought. He said very casually, "By the way, you have a small mass. Probably benign, probably nothing to be concerned about. But have your regular doctor follow up just in case."
So I went home. I took the meds and started feeling much better. I scheduled a follow up appointment with my regular doctor the next week who wanted to wait several weeks to do the MRI so that the diverticulitis and possible resulting inflammation was cleared up. I had the MRi toward the end of the month, completely worry-free. Everyone had said this mass was probably benign.
After the scan was complete, the technician came into the room and asked me what my personal cancer history was and when was the last time I had cancer. Then he asked for my family history of cancer. I probably should have been concerned about that, but I just answered the questions. The next day I was at Walmart early, buying decorations for Easter. It was 6:30 AM when my phone rang... and it was my doctor's phone number.
She said that they really just were not sure about what my tumor was at all. She said that it could be something or it might not be anything. She said she wanted to make a bunch of referrals (oncology, biopsy, blood work, specialist visits). I was getting more concerned at this point--- scheduling for a biopsy and an oncology visit is generally not a great sign.
My local healthcare system has an online mychart system. Once my MRI results became available, I think I already knew for sure. It said the mass does not meet the diagnostic features for the most common benign tumor… or the second most common benign tumor… and that it was "atypical" for another type of benign tumor. The report said my mass was highly suspicious for possible malignant neoplasm and a biopsy was recommended.
I started doing research on the cancer type
the report suggested was most probable: an incredibly rare cancer which affects relatively few people worldwide. It was like a horrible checklist and I just kept checking off things, like:
- Normally strikes people in their late teens to twenties.
- More common in females than males.
- More common in Caucasian persons.
- Unlike "classical" form of liver cancer, this type does not have underlying cirrhosis or liver disease.
I fit all the characteristics.
On April 12th, I met with the gastrointestinal specialist. She was a Fellow and said she had never even heard of this type of cancer, and she wanted to treat it like a more typical liver cancer which generally affect persons over 60. I then presented her with about 12 printed research articles from NIH, MD Anderson, etc and recommendations for treatment (pre-highlighted because I'm a little type A anyway, but a lot more so when it comes to cancer). She very graciously accepted my research articles and was very humble about not knowing what to do.
She excused herself to go and speak with her Attending Physician. They both came back into the room and the Attending said that it was most definitely cancer, and that I was a textbook case for this rare variant. She went on to tell me that for most people, they do not find the tumor until too late and they can't do anything for them. She said I was so incredibly lucky that it had been found and I would be "a slam dunk" for treatment. She said she was referring me for surgery right away, we didn't even need the biopsy because it was 100% cancer, no doubt.
I think this is when the shock hit me. Because even though I did my research and I knew the typical characteristics for diagnosis (and that I fit all of them), I just thought it had to be wrong. I had to be wrong. I couldn't possibly be right. It figures that I'm right the one time I DON'T want to be.
I left the doctor's office and was scheduled to meet with the surgeon two days later to discuss surgery.
I am a huge music person. I'll get stuck on certain songs when they feel particularly applicable to my situation. Ever since the diagnosis, I have been relating to "Closer to Love" by Matt Kearny
close enough that it's practically the theme song of my life right now:
She got the call today
One out of the gray
And when the smoke cleared
It took her breath away
She said she didn't believe
It could happen to me
I guess we're all one phone call
From our knees
We're gonna get there soon
And don't apologize
For all the tears you've cried
You've been way too strong now for all your life
I'm gonna get there soon
You're gonna be there too
Cryin' in your room
Prayin' Lord come through
We're gonna get there soon
It's hard to imagine that things can all change so fast, but it just takes an instant. One call really can rock your entire world. All I can do is play this song on repeat, and hope that "I'm gonna get there soon."
What was the first symptom of cancer that you found? Share with everyone in the comments below!
Photo courtesy of Allef Vinicius.