A small detour...

I have felt the need to update my blog for quite some time now as there have been some interesting developments in my personal fight against cancer.  But I haven't really known what to say, or more honestly, how to say it.  The events and my thoughts about these events have been so fractured and non-linear that it has been difficult to sit down and write about them.  It would be nice if my story had been more straightforward where I could say everything I needed to say starting at point A and finishing at point Z, but that hasn't been the case.  So I am afraid this blog entry is going to be somewhat muddled as I try to say everything I want to say but really having no idea how to say it or say it in an orderly manner.  So please bear with me as I attempt to just regurgitate the information in an informative manner, although at times it may appear to be haphazard.  I just want to get the information out there and I may stray in doing so.  This is my apology for the rambling nature of this post.   

So.  Where to begin?  I guess I'll start with where I left off.  I finished my chemotherapy for Hodgkin's Lymphoma last Spring and since then have had some interesting developments.  And by interesting, I mean really crappy.  After the eighth chemo treatment I had a PET Scan to check the presence of cancer.  At the time of that PET scan, the cancer was gone.  There was no detection of cancer anywhere in my body and I was told the chemo had done its job.  But a clear PET scan didn't mean I was finished with treatment.  I was told to complete the remaining four chemo infusions and that I would have another PET scan after that to verify my cancer-free status.  So that is what I did.  I finished the last two months of chemo and went in for my PET scan feeling very optimistic that my life would go back to normal soon and after recovering from the chemo toxicity I would have no lasting effects.  Well, my post-chemo PET scan was not clear.  Crap.  There was a faint glow on the scan in my collar bone area.  This spot was pretty small and my doctor thought it might mean the presence of cancer or it might mean something else entirely.  He recommended that I rest and recover from chemo and then come back in for a follow up PET scan in three months and see if the spot was still there.  So that is what I did.  I rested and began to recover.  

Excuse me please, as I begin to ramble.  My friends wanted to celebrate with me.  They wanted to show how excited they were for me.  They gave me a surprise "Cancer Free" party and I received such warmth and love for making it through this whole unfortunate mess.  It was truly awesome and heartwarming to receive such love from everybody that I had come out on top of cancer.  It was good for my soul to rejoice with my friends after such a difficult year and a half.  But at the same time, I couldn't help but feel tentative about celebrating.  I didn't want to tell anyone that the cancer may be back.  Not because I didn't feel it wasn't important enough to share, but because I was tired of the sad and uncertain days and the thought of cutting short the celebration for a small little glow on a PET scan didn't seem fair.  I wished for certainty in my rejoicing.  But I worried about it.  I don't think I was as jubilant about beating cancer as I should have been.   While everyone was telling me how happy they were for me, I couldn't help but think in the back of my mind "Yeah, but…"  So i joined in with the celebration and I tried hard not to be bummed out and I tried hard to appear more like a person that has just defeated cancer.  I feel I didn't reciprocate the enthusiasm as was expected.  I feel that I let people down for not being as happy as they were.  And I still feel bad for that.  

Three months passed and it was time for my next scan.  I went in and had the procedure and met with my oncologist a few days later.  As soon as he walked into the exam room I knew it was bad news.  I just knew it.  His demeanor and lack of usual humor was my first clue.  His desire to delay talking about the results was my next.  So when he said that I had another tumor and it had grown since my last scan, I was not shocked.  Instead I just asked him what this meant.  According to him, it meant that I had Recurrent Hodgkin's Lymphoma.  The use of the word recurrent means that I got rid of the cancer as previously thought, but it had come back versus another form of Hodgkin's Lymphoma called recuperative Hodgkin's in which the cancer never went away entirely.  I asked him if this was common and he said that it is not entirely common but it does happen.  He added in a more somber tone that it usually doesn't come back this fast though.  And that is a concern.  The prognosis for recurrent Hodgkin's patients can be affected by how quickly the cancer comes back, and anything returning within a year is not as favorable.  My cancer came back in less than three months.  But a silver lining to this grey cloud is that my cancer only returned at a Stage 1 level (meaning I only have one tumor) whereas before I started taking chemo I was a Stage 3 cancer patient.  He told me it would have been even worse had my cancer come back at the Stage 3 level.  So that is good news.  like I said - a silver lining.  So now I have this new tumor beneath my collar bone.  The same place I had had a previous tumor - not the same one, but within the same nodal group.  And now I have to tell people the bad news.  Which I hate.  Absolutely hate.  

Ramble on…  Breaking this news to people has been one of the hardest things I've had to do since this illness has started.  Now I was telling people who had been praying for me, wishing me well, keeping me in their thoughts, celebrating with me three months prior - that it was back.  I felt like a failure.  I did.  I honestly felt like I failed these people.  What was even worse was I felt like my cancer coming back was a nuisance for all of my friends and family.  I know it's not true, but I can't help but feel that people are thinking "Sheesh!  Again?!?!  Come on Nathan.  I've already prayed for you.  I've already given you all the support I can.  I'm not going to go through all this again."  I know, I know.  I am silly for feeling this way, but it is how I feel every time I tell people the bad news.  Partly due to this feeling of failing others, I have been less vocal about my struggle these past several months.  I feel like I shouldn't bother people again with this news and that I can get through it this time on my own.  It's not like I hide the fact that I still have cancer.  If asked, I share all the gory details, but I don't actively seek prayer and support as much as I had before.  It is a false belief on my part that people's sympathy has limits.  And perhaps what I am learning through this is that people have more to give than can be imagined.  I am extremely thankful for my friends who have cut through my shortsightedness and have reached out on their own to lift me up.  I have a friend who on his own decided that I needed regular prayer for healing and has been fervently meeting at my house every Friday morning for prayer time.  I am so extremely thankful for that time.  I have another friend who despite the cancer coming back has kept his promise to get a tattoo of my choosing to celebrate me beating cancer - the first time at least.  So he and I went into the tattoo parlor and I had them write "Romans 12:12" on my body and he did the same.  I am glad that he made me do it instead of waiting until this was entirely finished because I have been thankful to draw strength from seeing that verse daily and being reminded to be joyful in hope, patient in affliction, and forceful in prayer.  I need that reminder now more than I do in a month from now, or a year from now, or ten years from now, or whenever this is all behind me.  

A biopsy was the next step so I went to the hospital and had a needle biopsy performed.  I was a little pessimistic as to what they would find - or would not find as it turned out.  Throughout my battle with cancer, I have had four needle biopsies - all of which have come back as "Non-diagnostic with abnormal cell structure".  It was because of these nondescript findings early in my illness that I was sent to the Mayo Clinic.  It was there that the doctors decided to remove an entire tumor to dissect and finally found the tell-tale signs of Hodgkin's Lymphoma - the elusive Reed Sternberg cells.  So when my latest needle biopsy came back with the same non-diagnostic result, I wasn't surprised.  I was upset, but not surprised.  Of course this finding threw a wrench in the whole treatment plan.  You see, the next step for a patient with Recurrent Hodgkin's Lymphoma is a procedure known as Salvage Chemotherapy.  Not a very endearing name for a procedure, but nonetheless, this is what it is called.  Salvage Chemotherapy is a chemo treatment in which the patient goes to the hospital and has healthy stem cells from the bone marrow collected and frozen.  Then the patient is given 96 straight hours of Chemotherapy in hopes of killing all the cancer within the body.  But in doing so, the chemo drugs kill most of the other cells as well.  Which is why the stem cells were collected in the beginning.  Because after the 96 hour chemo regimen, the stem cells are reinserted into the patient's body in hopes that they will restart everything and healthy new cells will replace the dead and dying ones.  Basically, it is a procedure that kills the body before bringing it back to life - with the hopes that the cancer doesn't come back to life as well.  Needless to say, this is a pretty severe treatment approach and it is not used without absolute certainty of it being needed.  So with a non-diagnostic result from my biopsy, my oncologist was hesitant at ordering the salvage chemo and consulted with the doctors at the Seattle Cancer Care Alliance (SCCA).  They agreed that at this time I should wait for the cancer to develop into something more attainable before treating me with Salvage Chemotherapy.  It sounds crazy when I say it - that the doctors want to wait for my cancer to worsen before treating me - but when I hear it from my doctor it makes perfect sense.  So I am trusting him on this matter.  You may be asking if there are other treatments beside Salvage chemo - I did.  What about radiation?  Well, I went to see a radiation specialist who looked over my case and said with complete certainty that he would be able to zap my tumor and kill it entirely with minimal damage to my body.  Because of the tumor's location, the radiation specialist said that a part of my lung and perhaps a part of my throat could be affected leaving me with some damage to those areas, but he felt the damage was worth it to kill the tumor.  He passed his recommendation on to my oncologist and I began to prepare myself for some  radiation treatments.  But after meeting with my oncologist, I found out that he changed his mind about the radiation approach for a couple reasons.  First reason being that blood cancers like Lymphoma and Leukemia aren't typically treated with radiation for the reason that just because you treat the tumor at one location, it doesn't mean that the cancer won't show up elsewhere since these cancers typically travel throughout the body.  Which leads me to the second reason that he didn't want to treat my cancer with radiation.  If we did manage to get rid of the tumor, or the cancer that we can see, we have no idea if and when it may pop up somewhere else.  By treating with radiation we may actually slow the diagnosis process by hiding the cancer in my body until it pops up somewhere else and in that case it may be worse or too late.  So we decided to grant my tumor a stay of execution and monitor it closely.  I was told to get a CT scan every two months to monitor the progress of the tumor's growth and development and hopefully catch the cancer in time as it progresses into something more definitive that the doctors can stick their forks into - their words, not mine.  

Ramble.  So now that the cancer is back and people have been told, I am constantly asked how I am doing.  My first reaction is to give a nondescript answer of "Great, thanks for asking."  Which is always followed up with a second question of "Really?"  Now here is where I make that difficult decision every time someone asks that follow up question of "Really?".  Do I stick to my original answer and repeat that I am doing great (which is often followed up with the assumption that the cancer is gone) or do I tell this person the actual details of how I am feeling.  I usually just tell them that I am actually still having symptoms and there is still a tumor and because of that I am pretty tired a lot of the time and just not feeling quite right.  Then I receive the typical consoling sideways head tilt of concern and a small pep talk from this person and usually praise for how I am dealing with all of this and that is that.  Let me tell you something, hopefully without sounding too much like a prick - I am getting so tired of this routine.  I know, I know.  I sound like an ass here.  How can I be mad at someone who is genuinely interested in my well being.  But I am.  I have gradually become cancer or simply the person that has cancer.  Nothing else.  It happens more in church than anywhere else which is sadly why I don't go to church when I wake up and am just too tired to deal with telling people how I am doing.  People see me as the guy with cancer and they feel they need to inquire about it.  But I am tired of it.  I am tired of talking about it constantly.  I am tired of it being my identity.  I have learned through all of this that if I ever have a friend with cancer, I will not berate this person with ceaseless questions about how he is feeling.  Sure I will inquire from time to time how he is doing and ask if I can help in any way - or better yet, just do something for him without being asked.  But I will also remember that he is a person defined by other interests and pursuits and this cancer does not define him.  I feel that this could be a reason why I feel it is so important to continue with my blog so if anyone wants to know how I am doing they can simply read it here and treat me like Nathan when they see me out in the real world.  I know.  Prick.

So how am I feeling?  Well, if you recall from earlier posts, I have a paraneoplastic disorder.  Which means that when the cancer first presented itself in my body two years ago, my body tried fighting it off on its own and in doing so, caused some neurological damage.  If you may also recall, some of this damage was done to my urinating pathway.  I am still experiencing difficulty with this but nowhere near as bad as it once was.  I no longer have to self-catheter to urinate and the act of peeing comes much more natural now.  There is still hesitancy and difficulty at times, but like I said, it is much better.  It appears that this side effect may persist and become my new normal, but after going through everything that I have had to experience, I think I am okay with this new normal.  My other paraneoplastic symptoms (difficulty swallowing and breathing problems) have all but disappeared.  My other symptoms are more cancer oriented.  I have been dealing with fatigue and tiredness for a few months now.  I am just worn out and need naps more than ever.  However, I will say that I think I may have turned a corner with my fatigue, as it has been a couple weeks now where I don't need a nap a day to survive.  My strength is coming back and perhaps the prayers for healing are working.  Unfortunately, my itchiness still persists.  I have unbelievable itchiness throughout my body.  I can't stop itching.  I can't sleep on my side because my face can't touch the pillow or I will scratch it raw in the middle of the night.  I know, weird, right?  I experienced this itching at the beginning of my illness, but it went away during chemo.  I am hopeful that once the cancer is gone, the itchiness will cease to exist.  And take the fatigue with it as well.  

I had my first follow up CT scan in October and at that time the tumor had not spread and had actually decreased in size a little.  Once again, my doctor was stumped by the atypical path my cancer had taken.  It was good news that it had shrunk, but it was still there, so we decided to get another CT scan in two months and reassess the situation at that time.  My next scan was today, December 1st.  I now wait for the good news (of which I am sure it will be) and discuss my results with my doctor next week.  Now we are all caught up.  You know as much as I do and perhaps a little more.  I am hoping to have one more post after this one - simply titled "Cancer Free".  Wouldn't that be nice.

My life on drugs

Where do I start?  I have tried several times before to write this particular post and have had a really hard time doing so.  In the past, whenever I wrote a post for my blog I was able to simply write what was happening to me and lay out each event as best I could.  There is an effortlessness in writing this way - to simply remember and write.  However, each time I tried to write about my life on Chemotherapy I got frustrated with how negative my story quickly became.  And how dangerously close my words and tone came to whining.  That type of writing is annoying.  It annoys me.  I got fed up with how it sounded.  Nobody wants to read a “poor me” sob story.  And I don’t want to write it.  So I would usually just scrap what I had written and tell myself that I’d try again another day.  Maybe with a little more success.

This post was also difficult to write because I was never feeling good enough to write.  While on chemo, I lost a lot of motivation, especially when it came to writing about how bad I was feeling while feeling bad.  Does that make sense?  I hope so.  But now I have been off my chemo drugs for four weeks and I am beginning to feel better - I am slowly becoming more like myself.  I am becoming less and less nauseous from the smell of hand soap or from the taste of my toothpaste as I brush my teeth.  And now I am beginning to carry out my normal day to day activities like a regular person.  And that means I think I am ready to write again about my experiences.  So here it goes.  My life on drugs.

My drugs consisted of a four drug combination regimen of Adriamycin, Bleomycin, Vinblastine, and Dacarbazine.  Or ABVD for short.  To be honest with you, just thinking of these drugs fills me with anxiety and nausea right now.  It’s kind of surprising to see how affected I am by the mere thought of these drugs four weeks after my last treatment.  I was given this four drug cocktail every two weeks for over six months.  I would usually receive ABVD on a Friday and feel like death for a week and then slowly feel better until the next treatment began and then - BAM - death all over again.  You may be asking, “But Nathan, what does death feel like exactly?”  And that is a great question and one that I don’t know if I can answer to your satisfaction.  But I’ll try.

To begin with, Chemotherapy sucks.  It not only sucks, but it sucks balls.  Big, fat, hairy balls.  (Sorry for the blue language, but it’s true).  There is nothing - I repeat - NOTHING good about receiving chemotherapy.  Sure, it can kill your cancer, but make no mistake about it, it kills you while doing so.   And this is why I feel the best way to describe Chemotherapy is to liken it to death.  Most people often gain their impression of Chemotherapy by hearing the many nasty side effects of Chemotherapy.  Nausea, diarrhea, constipation, mouth sores, throat sores, hair loss, flu-like symptoms, weakness, and many more.  But those symptoms alone don’t fully illustrate what it feels like to be on Chemotherapy.  Because underneath all of these symptoms is a feeling far worse than all of them combined - it’s death.  It really is.  Imagine having the worst flu possible and all you want to do is just sleep and ignore the pain.  And you do that.  You do sleep.  Whenever you can.  I would sleep for days after my chemotherapy if I was able.  I would wake up at noon, eat toast, and then go back to bed.  However, chemo isn’t entirely like the flu in that sleep doesn’t help alleviate the pain.  You see, when you have a flu, you usually sleep and allow your body to fight off whatever bug is in your system.  When you wake up from hours of sleep, you generally feel a little better as your body has successfully combated the virus.  With Chemotherapy, you fall asleep with poison in your body. And you wake up with the same amount of poison in your body.  It didn’t go anywhere.  It’s still there.  In fact, sometimes I felt worse after waking up because as I was sleeping, more of my body was killed off by the drugs.  And all you want for days after receiving treatment is just to feel better.  Not to feel death throughout your whole body.  Not to smell it in your sweat.  Or your urine.  Or your breath.  I would smell the drugs as they worked their way out of my body and I felt dirty.  And tired.  And sad.  Starting to whine a little here.  Need a detour.

Last year when I began this adventure, I came upon a verse from the bible that has meant a lot to me throughout this struggle.  For those of you who don’t know, I am a Christian.  So I am sorry if my speaking about the bible makes you uncomfortable.  Well, wait - not really.  I’m not sorry.  It’s who I am.  Anyway, the verse is found in Romans.  Romans 12:12 to be exact and it goes a little something like this:

“Be joyful in hope, patient in affliction, faithful in prayer”

Even thinking about this verse now makes me somewhat emotional.  I have grown attached to these words and these words became my mantra as I struggled through my early symptoms and then onto cancer treatment.  When I was in pain from not being able to urinate.  Or every time I used a catheter.  And each time I felt like throwing up, I would run through this verse.  It helped.  It continues to help.  It reminds me what to focus on.  Granted, I had a few blow up moments for sure.  I told God that He sucked and that this should not be happening to me.  After all, He designed this body.  This is His creation.  Why isn’t it working?  But after I would have my little hissy fit and calm down, I realized being angry didn’t help me pee any better.  It didn’t heal me.  Blowing a fuse wasn’t the answer.  The answer was hope, patience, and prayer.

And I was right to have hope.  I was right to be patient.  I was right to faithfully pray.  After all, look where I am today.  Over a year and a half after all this has started, my cancer is gone.  Some of you may say that the drugs got rid of my cancer, and that’s absolutely true.  But the drugs didn’t sustain me.  The drugs didn’t keep my hopes up.  Not even close.  In fact, as I mentioned bluntly earlier in this post, the drugs sucked.  Cancer wasn’t the worst part of my illness these last six months, chemo was.  Chemotherapy was what I needed to endure - not cancer.  And these words found in Romans helped me do that.

So then getting back to my thoughts on Chemotherapy.  What do I really think about it?  I hate it and I curse it every chance I get, but it has taken away my cancer.  It has taken away the fear of losing my life to this horrible illness.  It has taken away the fear of never seeing my kids grow up.  It has taken away the fear of never growing old with Erin.  In the end, it has given me my family and for that I am grateful, bitterly grateful at times, but grateful all the same.

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.

If at first you don't succeed...

Amusing anecdote -
My daughter, Coren, asked my wife the other day who was in charge of our family?
Erin said “God is in charge of our family. But He asks Mommy and Daddy to help Him be in charge. And when Daddy isn‘t around, Mommy is in charge and when Mommy isn‘t around, Daddy is in charge. But God is in charge of all of us.”
Coren thought this over and replied “Hmmm, Sometimes I think Daddy thinks he’s God.”
I can't argue with that.  It's true.
　

If at first you don’t succeed…
Wow. A lot has happened since my last post. And I can’t wait to tell you all about it. But first let me tell you what happened when I met with my Oncologist, Dr. Kominsky. A whole lotta nothing. Well, that’s not true, but it sure felt like it. Since numerous tumors were found in my PET scan, my first order of business with Dr. Kominsky was to get a biopsy. That sounds logical enough. I had a tumor under my left collar bone, a couple behind my heart and kidney, and another one in my lower gut. The tumor located under my left collar bone was determined to be the easiest to reach for a surgeon performing a biopsy. So Dr. Kominsky scheduled an appointment at the local hospital for me to have a needle biopsy. The procedure was pretty simple. I went to the hospital, checked in, dressed in the hospital garb, got wheeled into a laboratory office, received an injection of happy juice, felt a couple of pin pricks near my collar bone, and then got dressed and went home to await the results. Simple enough.

Now even before I had this biopsy, Dr. Kominsky was mentioning the possibility of Hodgkin’s Lymphoma. Because of the way the tumors were spread throughout my body and not confined to any specific internal organ, it appeared that they exhibited the patterns most associated with Lymphoma. A simple blood test was administered and immediately ruled out Non-Hodgkin’s which meant that if I did have Lymphoma, it would be the more treatable form of Hodgkin’s Lymphoma.  That's good news.

Well after several days, I heard from Dr. Kominsky and was told that the result of my biopsy was inconclusive or non-diagnostic. It appears the pathologists did not get a good enough sample to determine much of anything. So a second needle biopsy was scheduled, this time with bigger needles. Once again I went to the hospital, got checked in, dressed up in the hospital garb, got wheeled into the same laboratory office, received some more happy juice, felt a couple of bigger pin pricks, and was wheeled back to my hospital room. Now unlike the first time, I wasn’t able to get dressed and go home right away because I had to have a bone marrow biopsy, as well. The doctors came in to my hospital room, had me flip over onto my stomach, and then used some sort of medieval boring tool to screw a hole into my hip and excavate marrow from my bone. Not pleasant. Not pleasant at all. But luckily I still had some residual happy juice in my system so I bared it with relative ease. Once they were finished and I had rested the required time, I got dressed, limped out of the hospital, and went home to wait again. Well, thankfully the bone marrow biopsy came back benign, but wouldn’t you know it - the results from the needle biopsy came back non-diagnostic. Again. Shoot! I guess they were still unable to determine anything from the needle biopsy sample size.

Dr. Kominsky was done fooling around now. He wanted a bigger, substantial sample that would prove once and for all that I have Hodgkin’s Lymphoma. It was decided that a large wedge-shaped section of the affected lymph node would be removed. As I met with the surgeon performing this operation, he told me the reasoning behind acquiring a larger biopsy sample. He said that with a needle biopsy a pathologist doesn’t always get a full assessment of the infected area. He likened it to a slice of pizza. If a person were to blindly grab with their fingers at a piece of pizza, they would likely get some cheese, tomato sauce, and crust. But chances are they would not grab all of the toppings of the pizza so they would not be able to determine what kind of pizza it was. So because he was going to go in and take out a slice of my lymph node, the pathologist would be able to see a whole slice with the cheese, the tomato sauce, the crust; but also the pepperoni and the olives and mushrooms and cancer. Hmmmm, yum. Cancer pizza. I asked a question that seemed logical at the time, “If it is better to get a slice of pizza, why not get the whole pizza? After all, I know a lot of people that get half pepperoni, half cheese on their pizza. What if I have a half benign, half malignant pizza?” Well, I was told that the complete removal of this particular lymph node would be tricky because it lies on top of some pretty major blood pathways. The surgeon did not feel comfortable slicing underneath the lymph node and risk possibly slicing up some things that are not meant to be sliced up. I appreciated his reluctance to needlessly slice me up and accepted that a slice was better than nothing.

I went to the surgeon’s office and got knocked out completely this time with some extremely powerful happy juice. An hour and a half later I woke up in a haze suffering from a severe sore throat - the tubes that were inserted into my throat to administer the anesthesia left me raw for a few days. I was asking for water for my throat when I saw Erin by my side talking to the surgeon. I heard a few words, not many, but what I did hear included “went well”, “good sample”, and “he did great”. That’s right! Did you hear that? I did great. I am able to lay motionless on a table for an hour and a half with the best of them.

Feeling confident that I will have answers from my latest biopsy, I looked forward to hearing from Dr. Kominsky. Unfortunately, when I heard from him I was greeted with more uncertain and vague results. The sample slice of the tumor was tested and deemed benign, but still looked highly unusual. It was sent to the NIH, National Institute of Health, for further review and hopefully, more clarity. Well, after three biopsies and three inconclusive results, Dr. Kominsky was a at a loss and decided it would be best if I stopped messing around and saw the big guns of medicine. He referred me to the Mayo Clinic and asked that I see an Oncologist and Neurologist to discuss my illness. I was scheduling the trip to Arizona and getting everything set up when we heard back from the NIH. They said that the sample they received was highly suspicious and they strongly suspected Hodgkin’s Lymphoma, but they wanted another lymph node, a whole one this time, to dissect and examine. Because my trip to the Mayo Clinic was just a couple of weeks away, Dr. Kominsky suggested I see the doctors in Arizona first and if they still didn’t have answers when I returned, then we would go ahead and remove another tumor. As it turns out, I didn’t have to wait to come back before having another tumor removed. I ended up leaving a piece of myself in Arizona. A Cancerous piece. But that will all be told in my next post, when I share the details of my trip to the wonderful land of Arizona and it’s fine medical facility.

We are almost caught up to the present and you have almost been told about my past year which means we can stop toiling over the past and start focusing on the days ahead. I’m looking forward to that.

What the what?!?!

Okay. Where were we when I left off? I think I was going to have another MRI done to verify that I did not have MS, multiple sclerosis. Well, I won’t keep you in suspense any longer. I don’t have MS. Okay then, so what do I have? Interestingly enough, some blood work came back from my last visit with Dr. Mackay, my neurologist. The results showed an increase of a certain antibody within my body and from this result, Dr. Mackay was able to say with confidence that I had a neurological disorder known as Anti-acetyl choline receptors on the autonomic ganglia (not myasthenia gravis). What the what? You may be saying to yourself that this is some sort of made up diagnosis. That this is actually something doctors tell people when they have no idea what ails them. I know because I thought this same exact thought. But no, there is actually something known as anti-acetyl choline receptors on the autonomic ganglia. And I have it. It is extremely rare and there doesn’t appear to be much information concerning this particular disease. Dr. Mackay told me it was very treatable, however, and all I needed was a series of IVIG infusions, a week’s worth, and I would more than likely be fixed. And he said that once this illness is treated, that it doesn’t come back. I couldn’t believe it. I was so excited. I had an answer and it was a treatable one at that. I was told that my insurance company would need to approve treatment as it is very costly, but once that is done, I can come back and start treatment immediately. I went home, told my wife the good news, and waited for the insurance company to respond. Well, the insurance company responded. PAYMENT DENIED. You have to be kidding me! WHAT!?!?! Let me get this straight. I now know what is wrong with me and I have a method of treatment to make me well and the insurance company is denying payment?!?! My doctor’s office wasn’t too worried and they seemed to think this was quite normal. They said that insurance companies tend to deny expensive treatments straight away, but once an appeal with a strongly worded letter from a doctor is made, the insurance companies usually backs down and allows treatment. So a letter was drafted, a second appeal was made, and I sat back hoping for the best. Nope, not this time. PAYMENT DENIED. Again. Well, I am not going to lie to you. I was extremely perturbed. Some would say I was downright pissed off. Now get this - Because the medical system is completely looney, I only have three appeals per calendar year before my insurance company pulls the wool over their eyes and puts their fingers in their ears and starts singing “la la la, I can’t hear you. La la la.” After a denied third appeal, I have to wait until the next calendar year to begin the appeal process again. I was a bit worried that I would be turned down for a third time, so Dr. Mackay suggested that I see some other doctors and see if I can get them to sign off on the recommended treatment. Perhaps my third and last appeal could be made stronger if I had a panel of doctors all recommending the same thing.

So over the next few months I saw a whole slew of doctors and had a whole bunch of tests done. Some tests I had had before, but some were new. I told them all my sob story. And I answered all their questions. One Urologist I saw at Virginia Mason in Seattle wanted me to have a Urodynamics test. “Sure” I say, “Bring it“. I don’t know what this test is but I figure if it helps me get answers and gets my treatment then I am all for it. However, I now know that I really should look into what a test is before I arrogantly say “Bring it“. Lesson learned. For this test, the nurse inserts a catheter up the penis and drains you of all your urine. They push down on your abdomen and sensitive areas to ensure that every last drop is out of your bladder and then insert a couple of other tubes up the penis. One tube being a monitoring device and the other being a tube used to force liquid into the bladder. That’s right - INTO the bladder. You see, the purpose of this test is to fill your bladder with a known amount of liquid and then once full capacity is met, the patient is required to urinate the fluid back out while the muscles are monitored for functionality. All of this while being X-rayed. Well, if you recall, throughout this whole experience, my bladder has stretched to hold an insane amount of urine. So they took one bag of saline and injected it into my bladder.
“Okay, do you have to pee now?” they asked.
“Nope.” I said.
“Interesting.”
Bag number 2 comes out and more saline is injected.
“How about now?”
“Still nope.”
“Hmmph, well do you think you could urinate if we let you try a little longer. You see, we don’t want to put too much fluid into your bladder.”
“I appreciate that. I’ll try.”
So there I am. Standing naked in front of an x-ray technician, two nurses, and my doctor trying to urinate when I know I can’t. I physically can’t. Some time passes and I am obviously frustrating them as they slowly begin leaving the room one by one until I am standing there all alone. With tubes coming out of my penis - standing over a urine receptacle. Occasionally, the nurse pokes her head in the room. “Any luck?’ “Nope. I’m afraid not.” “Okay. Just keep trying.” Oh you mean I should be trying to pee. So that is what I am doing wrong. I haven’t been trying. Interesting. I’ll give that a shot. I’ll try now…

Sorry. I don’t mean to sound pouty, but I was extremely frustrated. I wanted out of there. I wanted to be done with that test and in my car heading north on I-5. Heading home. Finally. Thankfully. Something opens up and I am able to void my bladder completely. The x-ray technician is long gone by now so none of this was recorded by the x-ray machine. But I didn’t really care. And truth be told, I don’t think the doctor cared either. He could clearly see something was wrong and tells me as much. I let him know what Dr. Mackay found and asked him if he thought that sounded like a reasonable diagnosis. He said it sounded reasonable and then said he would add his name onto the insurance appeal. Yes!!! Success! One more doctor to add to the list. I thank him for his time and leave.

During this time I also saw a Neuro-Urologist at Virginia Mason. What a waste of time that was. After getting a physical and answering all the standard questions, I was told that I should try and drink more water and see if that helps. Thanks for the advice Mister Neuro-Urologist. Next!

I found my way to the University of Washington’s Neurology Department and met the nicest old man named Dr. Philip Swanson. This guy rocks. He found out I was a stay at home dad and told me to read his friend’s book, “The Kitchen Sink Papers”, which is about his friend’s experience as a stay at home dad. He asked about my kids and told me amusing anecdotes of his own grandkids. After our chit chat he administered his own examination. I told him about my diagnosis and wondered if he thought that might be a likely cause of my problems. He said it might be and ordered some blood work to verify the results obtained from Dr. Mackay several weeks before. I went down to the lab, drew some blood and went home. I came back a week later to meet with Dr. Swanson. He asked if I had a chance to read his friend’s book yet. I hadn’t and he looked a bit disappointed. I need to look up that book. He asked after my kids and told me to bring them next time as he would like to meet them. I told him I would. I won’t though. I don’t want to drag my kids through a hospital for half a day and have to worry about taking them to the potty when I am trying to meet with the doctors. But it was sweet of him to suggest it. Anyway, my blood work results confirmed the previous findings. However, instead of recommending IVIG treatment, Dr. Swanson suggested I have a PET scan administered. You see, our bodies do interesting things when fighting cancer and producing irregular volumes of antibodies is one such thing. Dr. Swanson wasn’t expecting to find cancer from the PET scan, but he said it’s better to be safe than sorry. So I had a PET Scan two weeks later and heard from Dr. Swanson a couple days after that.
“Well, hello there Nathan. How are the kids? “
“Fine, thank you.”
“Have you had a chance to look at that book yet.”
Dang!
“No, not yet I’m afraid.” I really have to look up that book.
“Well, I’m calling because we found some interesting results from your PET Scan.”
“Really? Interesting how?”
“Well, the scan revealed several tumor like growths throughout your body.”
“Wow. Really?”
“Yes, I’m afraid so. I think it’s best if you and Dr. Mackay contact the oncology department in Bellingham and get these growths looked at.”
“Ok. I will. Thank you.”

Enter Dr. Kominsky. My newest doctor. My oncologist.

Chew and Swallow ... and say "Cheese"

It’s kind of like a coffin. Or what I would imagine a coffin would feel like. I know, weird as it may sound, I don’t try and spend too much of my free time laying around in coffins. But the MRI machine is close to what I would imagine one would feel like. The sides and front of the machine are insanely close to your body and I can understand why it freaks claustrophobic people out. I had had an MRI once before, a few years ago, so I knew what to expect. This time, unlike my previous experience, I was offered the chance to listen to some music while the MRI examination took place. They gave me a pair of headphones and offered me a choice of music to help drown out the noise of the machine. The nurse asked me what kind of music I liked and what I wanted to listen to during the procedure. I wasn’t sure and asked what kind of music was available. She said, “We have Blues, Jazz, Hip-Hop, Classical, Alternative…” I wasn’t sure what I felt like listening to so I went with what I assumed was a safe bet and said Alternative. At the last moment as I was being fed into the tube, I had a fear that it would be cheesy, mainstream alternative music like Creed or Fallout Boy or Linkin Park. And sure enough, it was. I was on my back and looking up at the rounded roof of the machine six inches from my face as the sweet dulcet tunes of Blink-182 began. “Aw (bleep)” I said under my breath. It wasn’t too soon after the music started that the cacophony of the MRI began. CHUNGA CHUNGA CHUNGA CHUNGA - tweep tweep tweep tweep - CHUNGA CHUNGA CHUNGA CHUNGA. After awhile I began focusing on the bangs and blips of the MRI to drown out the music being fed to me by the headphones. It was a mighty battle as to what least offensive noise would win out. In the end, I gave up and just took a nap.

With the MRI done and waiting to have my follow up with Dr. Mackay, I went back to my speech language pathologist for my Barium Swallow. I went into my speech pathologist’s (Patty‘s) office and was introduced to a whole new team of doctors and radiologists. Then I was escorted to a new section of the hospital and presented with a tray of soft foods. Bread, pudding, applesauce, etc. They placed an X-ray machine next to my head, covered my nether regions with a lead blanket, and then asked me to begin eating. The barium liquid that my food was dipped in or mixed into was pretty bland and kind of had a vanilla flavor. I almost didn’t even notice it except the fact that all the food had a weird milky white hue. While I was being given directions from the doctors who were standing behind a protective wall, I first began to notice something different about my swallowing. It had suddenly become easier to swallow and it felt better than it had in weeks and weeks. I thought to myself “This is great. I have a chance to show these people what is wrong with me and my throat decides to start functioning properly.” After working my way through the applesauce and pudding, I was asked to describe my problems I was having so that they could try and look for any complications. I guess they weren’t seeing any on their x-ray machine. I tried my best to describe my difficulties. How it felt like my throat would close and not allow any food to go down it. Or how the food would try to go back up my nose whenever I swallowed. Or how I had developed a little hiccup every time I swallowed a bite that was too big. They hadn’t seen anything yet of concern so they decided to have me swallow food that was bigger and might pose more trouble while swallowing. So I moved onto the bread. And thankfully this seemed to work as I immediately developed my problems again. “Whew,“ I thought, “You see? I’m not crazy.“ My hiccup was back and as I swallowed I had to stop and bring the food back up before swallowing again. I was actually thankful that the problems returned. After the bread, they were happy with the results obtained and came out from their protective lair to show me the video of me swallowing on a little monitor in the room. It was pretty cool to see an x-rayed image of my head as I chewed a bunch of food that illuminated on the screen. I saw my muscles working and the food moving around to the back of my throat and my little hiccups helping the food go down. Unfortunately, they weren’t able to really diagnose a problem but said they had a good baseline to refer back to if my problem got any worse. And that was all. They said thank you, have a good day, and I left.

I met with Dr. Mackay later that week to review my MRI. The images are pretty amazing as you get to see your brains and all that stuff right there in front of you. I was thankful that there were brains to see and they were pretty big if I do say so myself. New nickname - "Big Brains" Knudson. Dr. Mackay said that the images did not clearly show any signs of MS, multiple sclerosis, but that there were some blurry areas of concern. He didn’t like the quality of the images and asked me to get another MRI done so that he could say with more certainty that it wasn’t MS. Luckily for me, the lab downstairs had an opening that afternoon and I was able to get an MRI that same day. I walked into the MRI examination room with the confidence of a man having done this before. It was almost becoming commonplace. I laid down on my back and prepared myself for the coffin. I was handed the headphones and without even being asked I said “Classical, please.”

Other Symptoms

During the time I started having urination difficulties, I also began developing other weird nonsensical symptoms. I first noticed my problem swallowing when I was playing a game of outdoor soccer and went to get a drink of water at halftime. I took a big gulp of water from my water bottle and for some weird reason when the water moved to the back of my throat it didn’t go where it was supposed to go. Half the water went down my throat with a painful swallow, but half the water went upwards at the back of my throat and out my nose. I stood there on the sidelines with water pouring out of my nostrils. It was like I was using one of those neti-pots thingies that you use to clean out your nasal passages. I had a stream of water shooting out of my nose. I wiped away the drippings from my nose and tried again. Same result. The water wanted to go up my nose instead of down my throat. Uh oh. What does THIS mean? Over the next few days I began to notice how difficult it had become to simply eat meals. I would take a bite of food and move it to the back of my throat and I swear, this is the only way to describe it, it felt as if my body “forgot” how to swallow. My body froze and my throat muscles ceased to work. I would move the food to the back of my throat and it went halfway down and then stopped - no further. I would bring the food back up, chew it again, take a smaller portion, and then move it back and try it again. Sometimes it went down, sometimes it didn’t. On more than one occasion I had to spit out my bites into a napkin because there was no way it was going down at that point in time. I eventually worked out a system of taking smaller bites, chewing thoroughly, and swallowing every bite of food with a drink of water. The water helped the food go down but I was always fighting to keep this new water-food slurry from going up my nose. I had asked my Urologist if he knew of anything that could be causing this behavior. He was bluntly honest and told me that was not the part of the body he dealt with, but that it sounded to be something caused by a neurological disorder. And since I had no structural or physical damage that was causing my urination difficulty, he said that was probably neurological, as well. So he referred me to my first Neurologist, Dr. Mackay.

I met with Dr. Mackay and described all my symptoms to him. The urination difficulty, the swallowing difficulty, and another problem that had recently surfaced - my itching. I first noticed the itching when I woke myself up one night scratching the back of my legs uncontrollably. I couldn’t believe how bad my legs itched. I scratched and scratched and scratched but I never felt relief. There was no rash or hives or anything of that sort - there was just an intense need to scratch an itch. This symptom wasn’t necessarily a painful one, but it was very irritating. And it would migrate as well. It started off on the back of my legs and would persist for two to three weeks before it moved to my upper back. Then after another couple of weeks it would move to my upper thigh and so on. The worst was when it spread to my face. I looked like I had a nervous tic or something as I was constantly scratching my face and squishing my nose and eyes to seek temporary relief. Even my eyeglasses as they rested on the bridge of my nose caused me to tear up from the sensitivity that now surrounded my face. Dr. Mackay heard about all of these symptoms and pretty much summed it all up when he said “humph, that’s bizarre.“ He’s a straight shooter that Dr. Mackay. I underwent all of his neurological tests, a lot of which had to do with my balance and muscle strength. They were actually kind of fun as I stood on one leg and touched my nose and walked back and forth with my eyes closed. I’m a pretty good walker so I passed those tests with ease. Once he finished his exam, he entered some notes in his computer and then ordered me to have an MRI of my head and spine. He told me his first thoughts were that I might have MS, Multiple Sclerosis. Difficulty urinating, trouble swallowing, and itching can all be signs of MS so he set me up for a time to have the MRI and made another appointment to see him in a couple weeks to discuss the results. But in the meantime, he wanted me to see someone concerning my difficulty swallowing. During my examination, Dr. Mackay had noted that my soft palate at the back of my throat wasn’t moving correctly when I opened my mouth and said “aahhh”. He referred me to see a speech language pathologist/speech therapist for an initial consult and swallow evaluation.

I met Patty, my speech language pathologist, the following week and conducted my initial examination in her office. She began by asking me to describe my swallowing difficulties and took down notes in her notebook as I spoke. After talking in great detail for about a half an hour, she left her office and returned with a tray of food from the hospital cafeteria. The tray had a slice of bread, some peas and carrots, a bowl of soup, some sort of chicken cacciatore, and a glass of juice to wash it all down. She asked me to go ahead and dig in while she sat back and watched. I must admit, it was a bit odd. I felt like I was in some strange fetish film and ate my food in silence as she just sat there watching, writing notes, and occasionally asking me questions or giving me directions. “Try swallowing this way” she would suggest, “Now turn your head to the left before you swallow to see if that might help.” It actually did help. After I had a good amount of the hospital food, Patty told me it was plain to see that I was having difficulty swallowing and she would like to administer another test known as a Barium Swallow. Once again, I will not bore you with all the specific details so feel free to google “Barium Swallow“ if you‘d like. But basically it is a test in which I eat bits of food soaked in a chemical liquid known as barium that shows up on an x-ray machine. Images of my swallowing are recorded by an x-ray video machine and the barium helps to illuminate the food and shows its flow as it moves down my esophagus. By using x-rays, the specialists can get a better idea as to where any problems might be occurring along my upper digestive tract. Of course I wasn’t able to do the X-ray test during this appointment. No. Of course not. Instead, I had to set up another time to come in and perform the barium swallow. Now, on a side note, it seems to me that doctors enjoy setting up appointments. Why else would it be that every time I go and see a doctor, it appears that I leave with another appointment or two set up for some future date? Appointments, appointments, appointments. I am always scheduling appointments. I have become a master appointment maker. If only there was a way to harness this talent and use it for good. I haven’t thought of it yet. If you have any thoughts, let me know. Anyway, on the bright side, at least I was making the necessary appointments to see the doctors to try to find the answers to my mystery illness. I was working my way towards a finish line and it felt good taking the steps needed to get there.

So I have just reread what I have written so far and I am a little bothered by how depressing and gloomy it sounds. I have only tried to write what has happened to me this past year to give you all an idea of what I am going through, but how boring it must be to read about this doctor’s visit and that doctor’s visit and blah and blah. So I think I am going to stop here for the day. To give you and myself a break. Don’t worry though. I have plenty of doctor’s visits to tell you about in future posts.

I also thought this would be a good time to tell you about an incident I had with my daughter the other day.

So I was sitting in the living room reading a magazine when my 4 year old daughter walked up to me and said, “Dad, do you want me to grow?”. She had asked this question in an accusatory tone as if she thought I had secretly never wanted her to grow. And that she had finally found out my secret and was now onto me.
I was taken aback and said “Of course I want you to grow. Why?”.
“Because if you want me to grow you need to get me dannun-go-guhs. They help you grow.” she said.
“dannun what? They help you - wait. What?!”
“Grow dad, they help you grow. And you can make popsicles out of them.”
“What are you talking about? Where did you hear this?”
“On TV, on a commercial. Dannun go-guhs help you GROW”.
Clarity finally dawned on me, “Do you mean Dannon Go-gurt?”
“Yes. Dannon go-guh. Can we get it?”
“We’ll see.” I say.
This response is good enough for my daughter and she leaves me to my reading, but not before yelling back over her shoulder as she exits the room, “And you can make popsicles out of them!”

This is the reason we prefer commercial-free PBS.