A Wild Cancer Appears

Here is a picture I took on the day I found out I might have cancer. I find it so funny that MD Anderson was in the picture. It was almost a sign!

It was February 8th, 2017. This was the day of my first ultrasound outside my local hospital. I had just arrived at Baylor College of Medicine in Houston, Texas. The clinic was smack dab in the Texas Medical Center. The parking garage feels like a twisted American Ninja Warrior course. Objective: Reach your appointment ALIVE. I was dodging cars and people. Pro tip: If you are in a parking garage at any TMC facility, never close your eyes. Don’t even blink! Hold your eyes open as if you were waiting for expensive mascara dry, but you have to sneeze. Look at yourself in the mirror EYES WIDE OPEN with a half sneeze praying your eye shadow stays unscathed. This is what your battle plan needs to be. Running isn’t the best solution either, you’ll need to play the visibility game. If you must, flail your arms around or wear a safety vest. No judgment here. To those parking, would you PLEASE go slower? All of us have the same goal, we want to live. That is why we are going to specialty care after all. Thank you for your consideration. This concludes my public service announcement.

When I successfully arrived at the correct floor, I did the usual check in and sit down routine. I started chatting with other patients because 1. I assumed there would be a long wait and 2. I needed my adrenaline to go down from my live action Frogger experience. I was called back no more than 5 minutes later. I did what people do when they are picked out at a concert or TV show. Pointed to myself and stated “Me? Me?? ME???” several times to be sure. Surely this was a mistake, since I didn’t have to wait until I was on the fellow patient’s Christmas card list. She assured me that I was indeed the one she wanted. All without breaking into the musical number from Grease. I was incredibly disappointed.

She led me back to the ultrasound room. My tech seemed tired and not feeling social at first. Following the typical instructions, I laid on a surprisingly comfortable hospital bed. I had nice real sheets (not paper) and pillows! What was this? The Hilton ultrasound suite?? That wasn’t the only impressive thing. I stared at the ultrasound machine like I had never seen this technology before. Ooooohhhs and Ahhhhhs occurred several times during the actual ultrasound. I was captivated by how vivid and sharp the images were. I’m sure my tech was wondering “does she use a horse and buggy to get around?” but was polite enough not to ask. At some point her demeanor suddenly changed. She asked me questions like what I was told about my nodules, had they been biopsied before? Finally it was over and she handed me plenty of towels to clean up with. Ultrasound techs can’t tell you anything. We know they know, but are sworn to secrecy. After all the ultrasound goo was gone, she started to discuss thyroid cancer in general and that the survival rate was good. We parted ways with jokes and cheerful conversation.

I walked out to my mother waiting for me. Each step seemed longer than it was due to processing what just occurred. She started talking about getting lunch and where we could go shopping. After all, she knew that no news comes from the ultrasound. We would have to wait for the doctor appointment the next day. I stopped her and said “Mom, the ultrasound is abnormal”. We have a policy in our family that we try not to worry about something until it is certain, but I shared what happened. While cancer was looking like a real possibility at this point, we agreed to wait until confirmation. After arriving at the hotel later I tried not to think about it too much. I was sure an answer was coming the next day either way. Having the comfort of a definite was enough to get me through the night.

The next morning I ate a Texas shaped waffle. It was my feeble attempt to harvest the Lone Star State’s power to face the parking garage situation once again. It obviously worked because I arrived at the Internal Medicine/Endocrinology clinic for my results. After the typical vital signs I sat and waited even less than I did for my ultrasound. The doctor comes in and says:

“Hi, are you Alexa? You need a biopsy as soon as possible”

Getting told I needed a biopsy stat was quite the introduction. This was the chosen ice breaker? That would be equivalent to proposing on your new date’s doorstep. “Yeah, I saw your picture on the app and got the ring right away!” Dude, can’t we go out for dinner first? Or in this case some basic small talk.

“What do you mean as soon as possible?” I asked the doctor. She explained how my ultrasound showed signs of thyroid cancer. My nodules were solid, hypo-echoic, calcified, and with ill-defined borders. Now, these particular signs don’t always mean cancer separately. But together this was a Crocs and socks combo of the imaging world. I apologize for the disturbing metaphor, but we all know that is not a good look. I was so confused because none of my radiology reports at home had these terms. I consulted Dr. Google later to learn exactly what they meant.

I told her that I couldn’t have a biopsy. I “failed” my other one. I wasn’t a good patient after all. I would probably fail again and what would be the point. Now fully confused, she asks if a local anesthetic was used. Uh no. I had some sort of alcohol solution put on my neck that suspiciously looked like it came out of an alcohol container. Did I mention it also smelled just like alcohol? Does that count? I got the same look as the ultrasound tech gave me the previous day. Let me set the record straight: I do live in this century. I also have an iPhone and data plan if that helps my case.

I think she felt relieved that we were talking about two different types of biopsies. Mine: Unrealistic expectations, no local anesthetic, lack of skill, and not to mention lack of compassion. Theirs: As many breaks as needed, local anesthetic used, significantly quicker, and consideration of my comfort. Once we established this she returned to the urgency issue. Ideally, it needed to be done within a month, but her schedule was backed up. I was given the option of having the Interventional Radiology team do it. They only do procedures while she still has to see patients, which might help with scheduling. Not to mention they do complicated biopsies all the time. I was sold. She put the order in and assured me I could do this.

Unfortunately, for whatever reason, 2017 was a bad year for nodules requiring a biopsy. Shout out if you were part of this crew. The best I could get was in 6 weeks, and that was expedited. It was bad for my sanity. Being that far out my appointment the pep talk hype went stale. I also didn’t appreciate all the time my brain had to create bizarre scenarios. Would Steve Martin come in the room to reprise the role of Orin Scrivello in Little Shop of Horrors while mischievously looking at the biopsy instruments? This is where my mind goes people. Moral of the story: Try to get any procedure like this done as soon as possible to reduce your marathon thinking sessions. I found one upside to the wait. It gave me plenty of time to decide where I wanted be treated if it was cancer.

In our next adventure together I will walk you through the biopsy process and share some (hopefully) helpful tips.

Diagnosis: Impossible

Here is an actual picture of my arm after the lab incident!

Every cancer patient has a moment in their story where they knew something was off. Mine is a bit more complicated. As stated in my “About” section: My butterfly (thyroid) was already broken before cancer. I started thyroid hormone replacement therapy when I was 16 due to Hashimoto’s thyroiditis including a goiter (enlarged thyroid gland).

I was losing my hair. My skin looked like the Sahara Desert. My nails were brittle like glass. My face was droopy like the sad cat memes. And oh, the fatigue! No vitamin, supplement or caffeine amount would save me. Something was wrong. In an effort to find out what was causing my symptoms I visited several doctors. They said I had some sort of “anxiety issues” or puberty is rough for everybody so stop complaining about it. Or the big one: I was too young to have health problems. Just “relax” and all my issues would ~*magically*~ disappear. Did they learn these lines from med school? And if magic IS essential to my recovery, does that mean they attended Hogwarts School of Medicine? Your guess is as good as mine. I kept trying and found a doctor who ordered lab work for me.

I had 20 vials of blood taken. While that was a lot, it feels like even more when the much older phlebotomist is hitting on you the whole time. He got both my blood and on my nerves. Medical staff can’t claim ignorance of your age, that pesky wristband crushes any excuse. I wanted to run, but the needle in my arm kept me in that chair. I hoped Chris Hansen would pop out at any second and declare this was an episode of: To Catch a Predator. Unfortunately, Mr. Hansen never appeared. For the record, I did jump up as soon as my arm was bandaged and ran out afterwards. I also freaked out the receptionist. “What did they do to that poor girl, am I next??” were probably her thoughts. I apologize.

Since I finally got diagnosed with a thyroid problem, I was prescribed Armour thyroid for my replacement therapy. Armour is essentially dried pig thyroid in a pill. I used it for 3 or so years. For whatever reason that was making my levels worse and caused uncomfortable side effects. I had uncontrollable urges to roll around in mud and oink instead of talking. I knew the pain and embarrassment I was causing my family had to end. Just kidding, obviously. I started having issues with forgetting things and passing out randomly. I had some other problems, but I actually don’t remember them. Which proves the whole forgetfulness thing. My primary care doctor told me it was time to try Synthroid (levothyroxine), the most common and synthetic option. I didn’t want to because I saw so many horror stories and read that I would be making a terrible mistake. Not to mention it might appear that I was abandoning my holistic health philosophy. I was expecting a tar and feather treatment at my next visit to Whole Foods. Shockingly, none of those things happened. I started doing much better on “levo” and felt like I turned a corner at the time.

When I was 20, I was in an unfortunate (violent) situation. As a result of that, I had to visit my primary care doctor. He checked my neck again and told me something felt abnormal. He said he would order a neck ultrasound. Even though I was monitored with labs regularly, I never had an ultrasound before. Although it was awkward that my appointment was sandwiched between ultrasounds of babies, it was easy. Just lay there with some inconsistently warm goo on your neck. I didn’t think much of it really. I thought my neck was still swollen and that my doctor was just doing his due diligence. I received a phone call quickly after the radiology results came in. I had 3 nodules and they were large enough that they needed to be biopsied.

I was referred to a local endocrinologist and a biopsy was quickly scheduled. I was told it was going to be easy and that sometimes patients fall asleep. It wasn’t. I received no numbing medication on my neck and was expected not to swallow for an unrealistically long time. I know this now due to my second biopsy. It was nothing like my first one. Only 2 nodules were able to be biopsied. The samples were poor, and they were blamed on my skill as a patient. This statement still confuses me because I didn’t complete multiple years of schooling and residencies like the doctor did. But my skill gets blamed? Yeah, okay. This made me feel horrible, like a failure. I had been through more painful tests in the past. I pride myself on being a strong, red-haired lass. My morale was very low after the biopsy and it haunted me for years. It was something that “defeated” me. It was “stronger” than me.

If you are a patient or potential patient reading this before I write about my second biopsy, PLEASE KNOW: They aren’t all like this! Don’t worry, my second-opinion doctor looked at me like I came from the dark ages when I described this to her. If you have a good doctor, you should be in good hands. To the patient who has had this bad experience before PLEASE KNOW: Your biopsy excessively hurting, going bad, or not good samples. That is NOT YOUR FAULT! I have seen in other areas of the Internet where this story repeats. Please understand me clearly, it is not your fault. And it doesn’t mean your next biopsy will go that way, just like mine didn’t.

Answers were not coming from the biopsy. The pathologist understandably lacked enough cells to give any opinion on my nodules. The endocrinologist shrugged and said most nodules aren’t malignant (cancerous) so we could do follow-up ultrasounds. That was fine with me at the time, as long as I didn’t have to go through that again! I took my yearly ultrasounds seriously. My nodules kept growing, but I was prescribed higher doses of “levo” in hopes of shrinking them. I was concerned about the growth, but I was once again assured that most nodules were not malignant, and it could just be my Hashimoto’s. I tried to reassure myself. I was being a responsible patient after all.

After a few years of the monitoring, there became a point where deep inside myself, in my spirit, I knew something was wrong. I was having more fatigue than ever. My mind seemed like it stopped working. It felt like having the flu all the time. I wasn’t functioning well in daily life. Not only was my health failing, but I had this unshakable feeling. I blurted out months before what was my second-opinion appointment (even before it was scheduled) “I have cancer” to my confused family. No, I didn’t “speak this on myself”. It already was cancer. I just finally realized it. I knew it was time for a second opinion, including at a different hospital.

And that is when the story changed.