My trip to the desert

It was hot. I don’t know what else I should have expected stepping out of the airport into the night air of Phoenix, Arizona. It is a desert after all. But still, it was hot, and surprisingly so for being almost 10 o’clock at night. I hailed my shuttle at the curbside service and gladly stepped into the Air Conditioned climate of the van. This is what I am always told about the desert. When I bring up my displeasure of the sweltering temperatures I am swarmed with comments of “But everything has Air Conditioning.” or “But it is a dry heat.” I have never quite understood the dry heat comment - hot is hot. And as for everything being Air Conditioned, does that mean you live your entire daily existence running from one indoor building to another? Just to escape the outdoors. I don’t like that idea. Anyway, I will step off my soap box for now and stop complaining about the weather in Arizona. I have other important matters at hand after all. I had not flown all the way down to Phoenix to discuss the pros and cons of desert living. I was there on a mission. I was there to find answers from some of the best doctors in the world as to what has been ailing me for the last year.

After settling into my spacious hotel room at the Courtyard Marriott for the night, I woke up early the next morning and headed down to the hotel lobby. There was a shuttle provided by the hotel to take any patients staying there to the Mayo Clinic. I asked the receptionist behind the counter for a ride and was escorted to an awaiting van outside the front door. I climbed into my seat, put on my headphones and began reading my book as I waited to arrive at the clinic. Since I came to the hotel after dark the night before, I never fully grasped the lay of the land. So I hadn’t noticed the big cluster of buildings about 100 yards away from the hotel. It just so happens that these big clusters of buildings were the Mayo Clinic. So after a shuttle ride of approximately 30 seconds, I was delivered to the doorsteps of the clinic. I got out of the van and looked back up the road the way I had come. There was the hotel, in plain view. I thanked the driver and said “I think I’ll walk back. Thank you.“ I entered the front doors and made my way up to the third floor which consisted of the Oncology and Neurology Department. I checked in and was received by a nurse who took my height, weight, and blood pressure before dropping me off into an office down one of many hallways. After a brief wait, a super cool and super confident oncologist by the name of Dr. John Camoriano knocked on the door and let himself in. We made our introductions and then got down to business. He asked me to tell him what was going on with me and why I was at the Mayo Clinic. Well, I let him have it. I told him my life story of the past year. My urinating difficulties, swallowing difficulties, developing a freak case of Bell’s palsy, gaze palsy, breathing problems, and all the other symptoms as little as they might seem. After 15-20 minutes of my rambling and a few interjections of pertinent questions asked by the cool doctor, I finally slowed my pace down enough which cued Dr. Camoriano that it was now his turn. He reviewed the notes he was taking the whole time I was talking and said “This anti-acetyl choline neurological disorder…hmmm…Hold on a second. “ He picked up his phone, dialed a number, and waited for an answer on the other end. “Hello? Linda? This is Dr. John Camoriano at the Scottsdale Mayo Clinic.” Linda? Who is this Linda? Dr. Camoriano went on to tell Linda that he had a patient displaying the Anti-acetyl choline disorder and other puzzling symptoms. They exchanged some medical terms and some pleasantries and as quick as he was on the phone, he was off again. After hanging up, he turned to me and said “That was Linda Vasser. She discovered your neurological disorder 14 years ago and wrote the preeminent paper on the topic. I thought it would be wise to get her in the loop.” Shut up! You have to be fricking kidding me. I can’t believe it. So this is what makes the Mayo Clinic so unbelievable. Experts of all fields are just a phone call away from one another. I was stunned. And anxiously eager to see what was next for me.

Dr. Camoriano had reviewed my previous PET Scan and decided that I needed a new one. He ordered the scan to be done, as well as, a few other blood tests to be carried out. He told me to head down to the scheduling department where I would receive a new itinerary with these tests scheduled over the next couple of days and laid out plans to meet up again on Thursday to discuss the results. He was going to do some research and digging on his end and hopefully my results from these new tests will help him paint a picture of what was going on and have an answer for me on Thursday. That was his hope. Mine too. So I thanked him for his time and went back to the lobby to receive my new itinerary. Five minutes later, my week’s activities were taking shape.

My next appointment that morning was with a Neurologist named Dr. Bosch…I don’t recall his first name. He wasn’t as flashy as Dr. John Camoriano, but looked like he knew his business nonetheless. He had a thick accent that I couldn’t place and had the appearance of the old man from the Pixar movie, Toy Story 2. You know, the old man who fixed Woody‘s arm and cleaned him up. The same old man that was in the Pixar short film, Geri’s game, where he plays chess against himself in the park. If you have no idea who I am talking about, you probably don’t have kids. But you should see both of these films nonetheless. They are classic. Anyway, this is who my Dr. Bosch reminded me of - the old man from these films - or at least a slightly younger brother of his.

The good doctor put me through the regular gamut of neurological tests - all of which I had become a pro at performing. Close my eyes and touch my nose. Walk in a straight line on my heels - now walk back again on my tippy toes. Push against his arms - now pull them towards me. All of these tests that help him get a better idea of my neurological state, but all of which make me feel like a dog in training learning to shake paws or heel. There were some standard questions thrown in. All of which I had heard before and all of which I quickly gave my rote answers. He seemed to understand less and less as to what my problem could be as the meeting prattled on. He seemed perplexed and for this reason alone, I believe he ordered an insane amount of tests for me to perform throughout the week. I had no idea what some of these tests were for, but I feel he was taking a shotgun approach at finding solutions and hoping that one of these tests might provide answers or insight. He then told me to put on my clothes and head out to the lobby to pick up my newly revised itinerary. He told me he would meet with me again on Friday. Unfortunately, we never met again. Little did he know that I would be in the hospital on Friday having surgery. Little did I know for that matter.

I made my way to the lobby and picked up my newly revised itinerary. I saw that my once free week had now been crowded with appointments which would keep me busy for the duration of my stay at the Mayo Clinic. Each day found me making the familiar walk to the clinic and back. Each day I met with a new set of doctors, nurses, or technicians; each performing a test that they were specialized at performing. On one of these days, I had a test known as an Electromyography (EMG) performed. I had familiarized myself with this test before having it done hoping to know what to expect. It said online that some people may find this test a bit uncomfortable. I found it entirely uncomfortable. Electrodes were attached up and down my leg and foot while electrical currents were shot into the muscles causing an involuntary and painful jerk. It felt as if a series of jumper cables were attached to my skin and the doctors were trying to jump start my lower body - awkwardly twitching and kicking as I lost control of my legs and feet. After several rounds of this testing, the doctor excused herself to review the results. Several minutes later she came back and produced the needles she would use to reach the deeper skeletal muscles of my legs. Instead of hooking me up on the surface of my skin, she plunged the needles into my legs and searched for the right nerve. Even before the needles were given their electrical surge, I could feel a painful throb as the needles probed deeper into my leg. Once the needle was in the right place, they would turn up the juice and a pain I can’t even describe took over my body. Instinctively I reached down to pull the needles out, stopping myself just before doing so. Now as painful as this was, it was nothing compared to when they examined my foot. I don’t have much fleshy mass on the top of my foot, so one would think any nerve would be easy to find. But the doctor inserted the needle into the top of my foot and moved it side to side under my skin, exploring and searching for just the right nerve. After what seemed like hours, but was surely just seconds, she found the right nerve and revved up the juice and let it flow. YOWZA! That hurt. And this time I did not restrain myself and let her know that it was painful, extremely so. I think she got the message as she said she was done and didn’t need to pursue this form of testing any longer. She said that she couldn’t see any nerve weaknesses and everything looked fine. I have no idea what they would find if my nerves were deficient, but I am assuming if my nerves were bad or unresponsive I wouldn’t have jerked or felt anything. But I jerked. And I felt it. I gratefully put on my clothes, said thank you, and left as fast as I could - hoping that was the worst test of the week.

Luckily, the remainder of the tests were easy and mostly pain free. I had another barium swallow test and a weird test that assessed my skin’s ability to sweat. Some seemed reasonable and some seemed nonsensical, but they all seemed to have a purpose, and that was to find out what was wrong with me. After having my PET Scan, I met with Dr. John Camoriano on Thursday. He entered the office with the cool swagger that I had grown accustomed. He fired up his computer and began showing me the slides from my PET Scan. I had seen the slides from my previous PET Scan I had done in Bellingham, and compared to these new ones, they looked like ink blot tests. Whereas before I think I saw the slightest hint of a tumor, these images glowed on the screen. There was no doubt what was and what wasn’t a tumor. The lymph nodes under my clavicle, behind my heart and kidney, and below my gut lit up the screen. These images were also able to tell us which of my tumors were the biggest and nastiest. Dr. John Camoriano said the tumor found in my gut was the baddest of the bunch and recommended that I have surgery immediately to remove this tumor and have it examined. He asked me when I was planning to fly home. I told him Saturday. He asked if I could delay my flight as he would like to admit me to the Mayo hospital the next morning for surgery. I was kind of shocked. I was looking forward to heading home in two days. Now it looked like I would be staying an extra week. But I was here to find answers and it seemed that this surgery would be able to provide them, so I took it all in stride and left his office and headed to the Mayo Hospital for a pre-op consultation. I met with Dr. Madura later that afternoon and he told me that he believed he could get to the tumor with laparoscopic surgery. After discussing the surgery and agreeing that I would need to stay in the hospital overnight, I headed back to my hotel room to get one last night of peaceful sleep.

The next morning I made my way back to the hospital. I checked myself in and waited in the lobby before being wheeled back to the surgery prep room. I signed all the papers releasing liability and received information on a living will. I really need to do one of those. A nurse hooked me up to an IV and I was placed on a gurney. They pushed me into a room with what appeared to be a dozen doctors, hooked me up to an oxygen mask, and began pumping my body with anesthetics. And then I was out. Dead to the world. The next thing I remember, I was waking up in a hospital bed in a post-op section of the hospital. I overheard a nurse tell a doctor that I was coming around and looked to be doing just fine. My throat hurt and there was tenderness throughout my gut. I was in a daze and didn’t fully come around until long after being wheeled into my hospital room. It was then that I noticed I had a catheter in place and thought to myself that this was the reason I was having surgery - so as to not have to use these anymore. But as I wasn’t in any shape to get up and out of the bed to use the restroom, I accepted this catheter reluctantly. Luckily, I had a TV in the room and I turned it on and completely zoned out, counting down the hours that I could leave the hospital and make it back to my hotel room. The hospital wasn’t all bad, I just didn’t feel comfortable there and wanted more then anything to lay in bed in my hotel room - in my brief stay it had become my second home after all. Over the next several hours and into the night, I was checked on by the nursing staff quite regularly. If they wanted me to get a peaceful night’s sleep, they failed miserably as I was being poked and prodded every hour or two. I was being woken up to take my blood pressure or give me a shot of blood thinner or whatever it is they felt was more important than my sleep. It was a miserable night and I couldn’t wait to get out of there. The next morning I did everything I could to make myself look fully recovered. I stood up out of bed and walked around my room dragging my IV behind. I asked to have the catheter removed and breathed a sigh of relief as it was pulled out later that morning. I was beginning to feel somewhat normal as the hangover from the drugs began to subside. I asked the nurse when she thought I could leave. She said as soon as the doctors made their rounds and gave me the okay I could leave. So I waited. And waited. And waited. Finally around 3:00 that afternoon, the doctors gave me their okay to leave. By then, I was more than ready. I had already packed my bag and actually had to wave down the nurse to come take out my IV and walk me out of the hospital. I had a cab called for me to take me home. And after waiting several minutes on the curb, the cab arrived. I hopped in and headed back to my home away from home. Ready to relax and heal, in the comforts of the Courtyard Marriott.

Strangely enough, the pain I felt didn’t come from the site of the surgery, but from my shoulders instead. I was told that in order to perform a successful laparoscopic surgery, air was pushed into my abdomen to enlarge my gut and make getting to the tumor easier. Well apparently there was still some air left over in my gut and it was now rising up to my shoulders causing pain and discomfort. Fortunately, that was the only real pain I felt from the surgery and it only lasted for a few days. All in all, my recovery over the weekend was smooth and I passed the time watching TV and reading a book.

I had more testing that was rescheduled for Monday and Tuesday. These were the tests that I was going to have done on Friday, but couldn’t because of the surgery. Dr. Bosch was off on vacation the week following my surgery so I never had the chance to meet with him again. But his remaining tests were simple enough and didn’t require much energy on my part.

I met with Dr. Madura on Tuesday as part of a post surgery consult. He checked my surgery incisions and said that things were healing nicely. He also said that it was too soon to know the results of the tumor biopsy. He said that the lymph node he removed looked big and nasty and he felt confident that he got the right one. Now we just sit back and wait for all the tests to come back and hopefully have some definitive answers. I made my way back to the hotel room and packed up my stuff. I was flying out early the next morning and had to be completely packed before heading to bed. I was leaving the Mayo Clinic without definitive answers, but hopefully that would all change in the next few days.

I stepped off the plane in Bellingham wearing my usual shorts and t-shirt and immediately felt the chill of the cool autumn air. It was 65 degrees outside and sunny. A perfect day for me any other time, but having spent nearly two weeks in the desert, it felt cold. And I couldn’t wait to put on a sweatshirt. I gathered up my luggage and waited on the curb for my ride. Erin pulled up and I was so happy to see her. I went to the Mayo Clinic hoping to find answers and was so certain of finding answers that if you had asked me how it would feel coming home without them, I would have probably at one time said it would be greatly disappointing - even soul crushing. But standing there on the curb watching Erin get out of the car and take me in her arms I couldn’t care less. I was home.

Two days later I received the call from Dr. John Camoriano. He asked how I was doing and then revealed that he had answers. And this time he was certain of it. He dove right into it and let me know that I had Hodgkin’s Lymphoma. Cancer. This is what I have. Apparently I have a very rare combination of cancer with a form of dysautonomia. Which means I have a disease or malfunction of the autonomic nervous system and in my case it was caused by my cancer. It was this disease that I was expressing symptoms for and not the cancer which is why it was so hard to diagnose the Hodgkin’s Lymphoma. But they were able to determine I had cancer from the tumor they removed and found the telling signs from the testing they administered. Dr. John Camoriano told me that mine was the first case he had ever seen. My particular combination of Anti-acetyl choline receptor antibodies on autonomic ganglia and Hodgkin’s Lymphoma had never been reported in all the literature that the Mayo Clinic had at their disposal and only one other case of Hodgkin’s Lymphoma combined with a dysautonomia was found.

So there you have it. I am unique and one of a kind. But we all knew that.

I took this news in stride and prepared myself for what was to come. I knew cancer treatment was now in my immediate future. I had the answers I had searched for and now I needed to switch my tactics from fact finding to problem solving. I have a problem. It is cancer. And now I intend to solve it.