My trip to the Mayo clinic was rather uneventful, which is certainly a good thing. Let me rephrase that: my appointment was uneventful, my trip, however, was made eventful thanks to the unintentional comedy of my travel companions: my mother and aunt Paula. In an effort to protect the not so innocent, I won’t say who did what, but here are a few questions that will hopefully help you understand a few of their more absurd moments: What’s a walk through the airport without your bag knocking down a display case of metal water bottles and shot glasses? Or a trip to a coffee shop, a coffee shop that garnishes their beverages with hair from the pelvic region? Who wouldn’t drop to the floor laughing and pee their pants as their sister chokes/vomits on said garnish? Of course this happened at what’s arguably one of the most renowned hospitals in the world, so why wouldn’t a couple healthcare professionals stop to make sure they weren’t walking by a seizure? And to think, I was willing to go on this trip alone. Fortunately for me I didn’t, and equally important, I’m not easily embarrassed (I’ll cover more on that shortly).
I arrived for my appointment about fifteen minutes ahead of schedule (shocking, I know), checked in, and waited at a computer terminal with the dynamic duo. As we waited, Frick nonchalantly shopped for undergarments online. Frick asked Frack what size she needed…I couldn’t help but wonder what onlookers were thinking, as they must have been able to see the screen, and if they couldn’t, surely they could hear the conversation. Such a shopping endeavor may have embarrassed me pre-diagnosis, but after a couple of weeks in the hospital, a place where tubes are inserted into ONE WAY EXIT ONLY orifices, as well as man-made orifices that don’t belong on ones body, one would be hard pressed to embarrass me. Anyway, I was paged for my appointment after about ten or so minutes of waiting. After a quick check of my vital signs, I was directed to an exam room where I waited another five or so minutes for the Doctor. Notice the short wait times? The Mayo Clinic is undoubtedly a well oiled machine. After months of waiting, two flights, and the annihilation of a display case, I was finally about to meet Dr. Young.
Following introductions, the Doctor asked what brought me to Mayo, I wanted to say, YOU, but instead I said it was my pheo. I gave him a brief rundown of my story, how it started, and where I am today. He then asked to go through all of the medical records that pertain to my condition (there are a LOT). As I handed over the stack, he chuckled, “it’s going to be a while”. We all sat there in silence as Dr. Young poured over my records. Silence was broken only by the doctor as he marveled at my more impressive stats, “Wow, you were going for a record here with your normetanephrine levels. I’ve seen higher, but only in 2 or so patients.” That’s one record I’m glad I didn’t break. A few moments later, I noticed he picked up a packet of papers from the stack. As he began reading, his face changed, it was as though he had been gripped by a riveting novel. As he leaned back in his chair, I peered over in an attempt to see what had piqued his attention, it was instantly recognizable–the operative report. Being that I had witnessed that same intense look on many a doctor’s face following a read of the ‘ol operative report, I was fairly certain there would be a reaction. “Wow. Is this your only copy of this? I’d like to make copies of this if you don’t mind, this is very impressive.” I told him that he was welcome to copy anything he’d like, adding that I was speechless after reading the operative report. To which he replied, “oooohhhh I bet you were”. If you’re interested in reading the seemingly science fiction literary work of art, let me know!
Next, it was on to the CT, PET, and MIBG scans. Doctor Young first asked if I had seen them before, I hadn’t. He then asked if I wanted to see them. Obviously I knew what they showed, but up to that point, I hadn’t yet been able to bring myself to actually look at them. But, I felt comfortable with Doctor Young, and since he had asked (something no other doctor had done to date) I felt the time was right. We started with the first pre-op scan. It took about thirty seconds for the fun to start. “Wow. The human body is just amazing,” Dr. Young said as he explained in detail how the primary tumor had been pushing on my left kidney, left lung (partially collapsed), and pancreas. He also illustrated how some of my major blood vessels had essentially re-routed themselves to accommodate the monster that was trying to kill me. I couldn’t help thinking to myself, I’m glad that little expletive is out of me. Doctor Young continued by explaining several nodules near the primary tumor as well as my lung metastasis. We reviewed my most recent scan, noting that the primary mass, as well as all of it’s localized invasion and regional nodules had been removed, leaving just the small nodules on my lungs. It was during the review of my most recent scan that Dr. Young admitted, “You know, if you were having your surgery here, I would have told you that you’d almost certainly lose your left kidney and your spleen. I’m not sure how your surgeons were able to do what they did.” As I mentioned previously, this wasn’t the first time a doctor shared their bewilderment regarding the magic that happened in the OR. It seems as though referring to my surgeon as MacGyver was warranted. Side note: I’ll never forget how at ease my surgeon always made me feel, even when using words like formidable to describe the operation, his demeanor and confidence was always reassuring. I look forward to shaking that mans hand again, gently of course! I’ll also be sure to pass along that every time a doctor reads the operative report for the first time, they look like a kid seeing snow for the first time.
At last, Doctor Young had finished going through all my records, and scans. The verdict was in. “Well, I agree with everything that your doctors are doing, which is nothing.” This is what I wanted to hear! Given my current tumor burden and catecholemine levels, Dr. Young described my disease at present as, “wimpy”. Also what I want to hear! I realize that many of you may be wondering why I’m not undergoing any treatment or more surgery right now. As Dr. Young explained, there is no cure (YET) for this disease, so the punishment must fit the crime. In this case, the crime is what the tumors are doing to me, and the punishment is what my doctors do to combat the crime. Any punishment the doctors dole out comes with it’s own risks and side effects. Right now I’m in an observation phase during which the doctors will determine the growth rate of my disease (so far, everything is stable). If in a year or so things are still stable, I may undergo additional surgeries in an attempt to remove residual disease from my lungs. If the disease is more aggressive, we can use chemo or radiation to slow it, or hopefully even cause it to regress. The reason surgery isn’t recommended at this point, is in case the disease is more aggressive. In this case, I would need chemo or radiation, so there would be nothing gained by subjecting me to a risky major surgery. Dr. Young said that one of his greatest challenges with this disease is explaining to other endocrinologists as well as oncologists that it doesn’t make sense to hit a pheo patient in the head with a sledge hammer because there’s a mosquito flying around. I’m fortunate to have an exceptional team of doctors here in Boston that know what they’re doing, some pheo patients aren’t so lucky. Just to re-iterate: at this point, my disease is stable, which is what we want!
Meeting Doctor Young was well worth the trip. In no way did I ever doubt that my doctors here were taking all the right steps, but with such a rare disease I feel that it’s important to be known to as many big guns as possible. It’s important to me that information about my case is shared and studied by as many people as possible, in the hope that progress can be made against this disease for current and future patients. Additionally, meeting with Doctor Young was an absolute pleasure. At no point did we feel rushed, and I certainly appreciated the time that he took in explaining the scans to me. I must add that I immensely enjoyed his sense of humor, most notably his ability to throw in a compliment to my medical team at MGH. When my mother asked if he had any secret treatments, he explained how the number of secrets he has is directly proportionate to the number of trees around where you live. If you’re coming from the backwoods of North Dakota, then boy does he have secrets for you, but coming from Boston, specifically MGH, then he doesn’t have many, if any secrets. In closing I’d like to say thanks again for all of your support, spiritually and financially. Things are going as well as they possibly could be, and without your help I wouldn’t have had the means to seek a second opinion from such a respected expert. THANK YOU!!!