Heather von St. James was diagnosed with Malignant Pleural Mesothelioma shortly after the birth of her daughter, Lily Rose. This is a rare type of cancer that occurs in the thin layer of cells lining the body’s internal organs, known as the mesothelium. It’s often associated with asbestos exposure. At the age of 36, Heather was given a life expectancy of no more than 15 months. Click here to read more about Heather, her family, and Lung Leavin’ Day.
I’m happy to say that nothing appeared on the scan (insert a BIG sigh of relief, and maybe a tear of happiness that may have escaped my eye a time or two).
– Heather Von St. James
One would think after 11 years of getting CT scans every 6 months that my scanxiety would be mostly nonexistent. Sad to say that isn’t true. Sometimes it can be just as bad as the early years, but now I’m just a lot better at calming myself down and talking myself through it all.This check up was no different. See, I have a ritual I go through everytime I go to Houston and it helps set the stage for the scans and helps me remain calm. This time though, my ritual got a bit messed up. I usually arrive in Houston late in the afternoon, check into my hotel, relax, and order room service (always a cheeseburger – room service cheeseburgers ROCK), then set my alarm for bright and early because my scan is always early in the morning before my checkup with Dr. Sugarbaker, my world renowned mesothelioma doctor.
This trip, my scan was on Monday, the day before my appointment, which meant I had to catch a really early flight to Houston to arrive in plenty of time to get checked in and to my scan appointment. I got up at 4 in the morning to catch my 7:00 am flight, trying to calm the butterflies in my stomach. I think they were also worse this time because I had been dealing with laryngitis off and on for the last month or so. I couldn’t help thinking the cause of this annoying voice loss might be more insidious than just simple allergies.
I made it to Houston with plenty of time and got my scan at 3:00 pm. Everything went as planned and I returned to my hotel room. I laid down for a short nap only to wake up 5 hours later. I decided not to order my cheeseburger and just went back to sleep, but in the back of my mind, I thought “There is something else that didn’t go according to your ritual, will the scans show anything??” I fell into a fitful sleep, and finally got up at 7am to get ready for my appointment with the good doctor.
My favorite thing to do when I go to Houston is talk with newly diagnosed patients during the orientation and this day was no different, except my voice was hardly above a whisper. It is hard to inspire people when you can’t be heard. Nonetheless, I tried my best to speak at the orientation before I went to my checkup.
I was fortunate enough to meet another patient who was 6 weeks post-surgery and recognized me from my blogs. It’s like having an instant friend when that happens! There was also another patient there for her checkup. She was the good friend of someone I knew through Facebook whose husband had passed from mesothelioma. I was happy to have people around me that day since I go to my follow-up appointments on my own.
When Dr. Sugarbaker came to see me, he said what I was hoping for: my scans looked great (big sigh of relief). But he was concerned about my voice and that there may be a bigger reason than simple laryngitis for its absence. My big sigh turned into a bit of a gasp. There it was. He wanted a PET scan to make sure that I didn’t have anything growing on my larynx to cause my voice loss.
I had not had a PET scan since I had radiation 10 years prior, having only had CT scans at my bi-yearly checkups. I was nervous and scared, but most of all thankful for a doctor who wanted to make sure everything was ok, and if it wasn’t, make it that way. My mind started racing with all the what ifs that plague every single cancer patient when something like this happens.
My PET scan was set for noon and I was to follow up with him after. I had forgotten what an ordeal it was to have a PET scan. You are given a radioactive glucose solution intravenously and then you have to sit very still for the next 45 minutes as it courses through your system. The first growing or present cancer cells gobble up the radioactive sugar and those areas glow or light up in the scan, showing the radiologist and doctor where the cancer is.
I finished the scan and went back to his office. I have never been more thankful for the friends I made that day because they provided the support I needed! I’m happy to say that nothing appeared on the scan (insert a BIG sigh of relief, and maybe a tear of happiness that may have escaped my eye a time or two). He said nothing showed up, but if it continued or got worse, I should see an ENT to see what kept causing it. Just to be cautious, he wants me back in 4 months to follow up, and I’m ok with that. I hear Houston is beautiful in September.
Guess what happened at dinner that night? Yep, my voice came back and I haven’t had any issues since. Go figure.
I guess the takeaway is this: no matter how far out you are from your diagnosis and treatment, those feelings of fear and nervousness about something going wrong or a scan coming back badly never really go away. I’m so thankful for my tribe, old and new, who I can reach out to in my time of need and know I’m never alone. I know a few people were just as nervous as I was and I could feel their prayers and thoughts from miles away.
Scanxiety is just something we as cancer patients will have to deal with for as long as we keep going. I’m just thankful my doctor is as careful as he is, so in between scans, I can concentrate on living, not the what ifs.