The first time I remember crying in the last decade or so...well, that story will undoubtedly be told when I get back to writing the prologue to Sam's story. Let's just say that involved me, my deck, and one of the moments in my life that I truly felt the weakest. But telling that story now would do disservice to the actual context of it. Just...stay tuned. The second time I remember crying in the last decade was last summer, days after my sweet Grandmother had died. I didn't actually cry at her viewing, nor at her funeral (I got close, watching Lukas shed tears as they closed her casket), nor at her internment. Instead, I shed my tears in the quiet of my kitchen. Everyone had gone to sleep, and I had agreed to put together a slideshow of photos of my Grandma's life for the viewing to be held the next day. In that quiet...alone and staring at the many faces of my Grandma's life...that's when I cried. It was cathartic. It was meaningful. And then it was over.
So you must know how emotionally unprepared I had been when we got the news from the HHT Clinic that they believed the genesis of Sam's story was contained within my genetic code...my blood. Truth be told, they weren't 100% sure. They couldn't be. Only a genetic testing of my blood would really let them know if CM-AVM was the cause of all that had (and was to) happened. During that fateful meeting with Sam's Genetics doctors, they had assumed that CM-AVM was the cause because of the similarities of red birthmarks between father and son, and the fistula that had wrecked havoc on a young little infant. And due to their assumptions, a couple things needed to happen in short order. First was preventative. If they were right, I needed a MRI. We needed to rule out the possibility that I had a similar AVM/AVF, and recent statistics involved with this genetic disorder indicated that 30% of all cases included a spinal or brain AVM/AVF. But what they really wanted was my blood - they wanted to do a multitude of genetics tests to try to find the specific marker for this disorder. They would be looking at the RAS-1 gene, hopeful that they would find what they were looking for. That test, however, took 3-4 weeks to get results. Hence the MRI. Hence the quick schedule.
So the plan was simple. I was to return to the HHT Clinic the following Monday, this time as a patient. I'd get a full examination (more than just the "take your shirt off" quickie I'd encountered during Sam's appointment), get my blood drawn, and then would head into my first ever MRI. I should note that my personal medical history has been quite boring. Besides getting stitches in my pinky , and a tooth and thumb thing while I was an infant, the most exciting thing I had experienced was dropping all of my body weight onto my thumb just months ago while holding Sam. So going from nothing to MRI was slight exponential growth on the medical scale. On that Monday, Elisa said she would meet me for the festivities, but we did end up driving separate. And it was here (I was about 10 minutes early) that I cried for the third time in the last decade or so. Again, I picked my timing carefully. Alone in a hospital parking garage, with few around me. I didn't sob, nor was I sure why I was crying. But the guilt of Sam, the fear of something in my own brain, and the weight that this story - one that I had decided to chronicle in words - crushed down on me for a few moments. I collected myself, adjusted my mascara (okay, maybe not), and got out of the car to see what my own story would be.
Elisa was running late, so I headed in myself. I walked to the desk to check-in and was promptly told that I didn't have an appointment. Suddenly, I wondered if I'd made the whole thing up. Maybe I would wake up from the dream and be back at home, blissfully ignorant to a cause of Sam's fistula beyond that "one in a billion". I was then told that she just didn't have access to the right schedule, and to sit and wait. By the time they called me in, Elisa still wasn't at the hospital, so I texted her to just wait until I was done, and then we could head for the MRI. I was greeted by Jamie MacDonald again, and after a few requisite questions, my examination with Dr. Stevenson began. Apparently, my heart and lungs were great. My blood pressure was quite low. And sure enough, as he had with Sam, he found multiple red birth marks on my body. I was quite impressed that I was already aware of them, but it was strange to have him identify them as a physical manifestation of a genetic condition, as opposed to just a "birth mark". After he was satisfied that he had recorded every single mark on my body, he left and the poor nurse brigade came into draw my blood.
And oh, they tried. Numerous times, I was told that getting blood from someone my age shouldn't be this hard. Ummm...I'm sorry? One nurse failed, and sent another one in. I was just getting ready to meet my third nurse when Jamie MacDonald returned, saying that I was going to be late for my MRI. Apparently (it would have been nice to know this a bit earlier), my MRI was actually all the way across campus and was scheduled to begin in 13 minutes. Oops. So the blood draw was off, and I needed to get going. Unfortunately, in the day and age of smart phones, I made the mistake of asking for directions. I lost 5 of my 13 minutes watching them fumble on Google Maps for proper directions. I lost another 3 when they tried to print. I guess it is true that everyone has a specialty...and work outside of that specialty leaves a lot to be desired. Don't ask medical professionals to navigate Google and printers. Scary. Almost as bad as trying to draw my blood. Oh wait...
So I left the HHT Clinic in a mad rush, met up with Elisa, and we both headed across campus to get to the MRI. Don't worry - I didn't have time to shed any tears. I was trying to remember how to get around campus. You know, I went to the University of Utah for 4 years to get my Bachelor's and 2 more years for my Masters, and I still screwed up my path. Somehow, I thought that the road to the Union building had an exit. It didn't. So I got to take the scenic tour, openly wondering where the golf course had gone, and arrived quite a bit after Elisa. I was 10 minutes late. I wondered if they would punish me with bad music during the actual MRI. We headed in to find out if I had something festering up there in my brain. I checked in at the desk (it appeared that no punishment would be coming for me), and then we waited. I filled out paperwork that found 1,232 new ways to ask a basic question: do you have any metal in your body? I honestly started wondering how many people checked yes to half of these questions. If so, they need to step away from metal of any kind. They are gluttons for punishment.
A few minutes later, they called my name and I headed into the "preparation" area. For those of you who don't know how this works, let me enlighten you. First, they are nice enough to remind you that this will be the last time you can use the restroom for quite awhile. They strongly encourage you to try. Yes, honestly. So after that necessary step was taken care of, you then turn your attention to the lockers and changing stalls. The instructions are clear. Put on a gown. Put on the pants. Put on a coat. Yet, when you get in there, it's not quite as intuitive. Why? Well, the gown opens at the back, the pants have a draw string, and the coat is pretty large. I have no problem admitting that it took a couple times to realize that the combination was meant for ultimate protection...as you go back out into the open waiting room. Nothing awkward like wonder if your money maker is hanging out in between your too large pants, open gown, and awkward coat. All I needed was a pipe and I could have probably been the next Hugh Hefner.
Which brings me to the best part of this entire experience. I wonder what someone does when they come in alone. Why, you might ask? It has to do with the locker. The key to the locker is quite large, and is attached to a large metal ring. So after you dispose of all of your clothes and put on the three piece outfit, you walk back out and stare at a door that plainly states that no metal can accompany you. I was lucky. I passed the "one ring to rule them all" over to Elisa. But I can only imagine the conflict in a MRI patient that doesn't have a friend to come along. You have to have the key...because otherwise other patrons could get into your stuff. But you can't take the key. Maybe it was a puzzle that you had to solve...and if you couldn't, they punished you with bad music in the MRI machine. I started expounding on this conundrum to Elisa, who just stared at me like I had better things to be worried about. To my credit, I'd gone from private tears to openly wondering about metal keys and their difficulties to a MRI patient in the span of an hour.
Soon enough, the metal key and the ring of death stayed with Elisa and I was called back for the MRI. The tech was nice enough...he asked me what kind of music I liked and promised to pump a Pandora station into my headphones. He then told me that I'd be getting an IV, as they had to inject dye into my veins so they could take pictures. Lovely. That wasn't really expected and I started to wonder if I'd be like Sam was, smelling like bad Chinese food for the next couple of days. While the nurses at the HHT clinic hadn't been able to draw some simple blood, this tech had no problem establishing an IV. He asked me if I was claustrophobic, to which I said "I doubt it", and then I laid down. I wasn't prepared for the metal head trap of doom to come over me. And as I was wheeling back into the tube, the tech gave me the brilliant advice of "just listen to the music...don't count the booms". Don't count? Is he even slightly aware that counting booms plays right into my slight OCD? Hey then added "some people come out and have heard over 1,000." Ummm...now, I almost HAVE to count don't I?
I spent the first 30 minutes trying to focus on the music (I chose Dave Matthews Band). Ants Marching....34, 35, 36, 37....Don't Drink the Water....112, 113, 114...What Would You Say?...232, 232, 235....and then got distracted by an all bigger problem and annoyance. For the last week, I'd been getting over a cold and heading into the MRI, I was feeling pretty good. I'm not sure if it was the angle of my head in the metal ring of doom around it, but suddenly, I felt like I couldn't breathe properly out of my nose. I could only imagine what the tech was thinking as I started this strange swallow/sniff routine to try to save myself from passing out due to a lack of oxygen. Let's just say by this point, I wasn't counting booms anymore. I was trying to breathe. And no, it wasn't claustrophobia. I doubt if it was, I would have noticed how many little dots of some black stuff were right above my head (13), nor that there was a big scratch the kind of looked like a moon from a Van Gogh painting about 30 degrees to the right. Don't judge. OCD, I tell ya. But it was disconcerting to not be able to breathe because of my outgoing cold. It was more depressing when he came in and said I needed an extra 10 minutes because the pictures were fuzzy. Hey tech...you try to get perfect pictures when you have post nasal drip!
Before I knew it, though, the MRI was over, the IV was out, and I stood up. I gasped for air as if I had been deprived, and I could almost feel the post nasal drip subside. I stumbled out of the MRI room and retrieved the metal ring of Mordor so that I could remove my custom three piece suit and get dressed again. When I came out, I was informed that results would probably come from my doctor in 24-48 hours. We walked out together, said our goodbyes, and Elisa and I went our separate ways. As I drove back from the MRI to work, there were no more tears. Just a vision that I never expected. Sam and I, each on a gurney, each getting an embolization that neither of knew we needed and neither of us truly wanted. In truth, I wasn't sure if I had an AVM - I had been the picture of health for 35 years, so I was quite confident that I didn't have anything up there. But the thought that I could was daunting. And for that one moment, I stopped being Sam's dad, helping him in his journey. I was Sam. I realized the fear and worry that Sam never would...but that he should. A threat to something you never really worry about unless you have to - damage to your brain. And as I drove back to work, I didn't feel scared. Or sad. I felt paralyzed.
I'll spare you waiting for the next blog post to find out the results. The next day, I called Jamie MacDonald (of course I had to call...they couldn't do me the honors) and asked about my results. She looked them up while I sat on the phone in my office and stared out the window. She stated that the results were only preliminary, and she would absolutely call when they were official (she never did), but my MRI results were completely normal. No AVM. Just red birth marks, and the wonder if this was actually CM-AVM at all (I still hadn't gotten my blood drawn). I called Elisa first and told her the news. I wasn't sure what reaction I expected, but I was pleasantly surprised when her only reaction was that she was now left without a medical reason that explained me being clearly abnormal. I had to laugh. Count on Elisa to find the silver lining in a bad situation.
As for me, when I got home knowing that I didn't have an AVM, I immediately went over to Sam and picked him up. I held him close and whispered the only words that came to mind. The only words that seemed to matter in that moment. The words that continued to paralyze me, long after I realized that my brain was pretty damn normal. I whispered "I'm sorry". For he was carrying the burden that my blood potentially had caused...and that I had avoided.
And quite clearly, the world didn't seem like a fair place at all.
A few minutes later, they called my name and I headed into the "preparation" area. For those of you who don't know how this works, let me enlighten you. First, they are nice enough to remind you that this will be the last time you can use the restroom for quite awhile. They strongly encourage you to try. Yes, honestly. So after that necessary step was taken care of, you then turn your attention to the lockers and changing stalls. The instructions are clear. Put on a gown. Put on the pants. Put on a coat. Yet, when you get in there, it's not quite as intuitive. Why? Well, the gown opens at the back, the pants have a draw string, and the coat is pretty large. I have no problem admitting that it took a couple times to realize that the combination was meant for ultimate protection...as you go back out into the open waiting room. Nothing awkward like wonder if your money maker is hanging out in between your too large pants, open gown, and awkward coat. All I needed was a pipe and I could have probably been the next Hugh Hefner.
Which brings me to the best part of this entire experience. I wonder what someone does when they come in alone. Why, you might ask? It has to do with the locker. The key to the locker is quite large, and is attached to a large metal ring. So after you dispose of all of your clothes and put on the three piece outfit, you walk back out and stare at a door that plainly states that no metal can accompany you. I was lucky. I passed the "one ring to rule them all" over to Elisa. But I can only imagine the conflict in a MRI patient that doesn't have a friend to come along. You have to have the key...because otherwise other patrons could get into your stuff. But you can't take the key. Maybe it was a puzzle that you had to solve...and if you couldn't, they punished you with bad music in the MRI machine. I started expounding on this conundrum to Elisa, who just stared at me like I had better things to be worried about. To my credit, I'd gone from private tears to openly wondering about metal keys and their difficulties to a MRI patient in the span of an hour.
Soon enough, the metal key and the ring of death stayed with Elisa and I was called back for the MRI. The tech was nice enough...he asked me what kind of music I liked and promised to pump a Pandora station into my headphones. He then told me that I'd be getting an IV, as they had to inject dye into my veins so they could take pictures. Lovely. That wasn't really expected and I started to wonder if I'd be like Sam was, smelling like bad Chinese food for the next couple of days. While the nurses at the HHT clinic hadn't been able to draw some simple blood, this tech had no problem establishing an IV. He asked me if I was claustrophobic, to which I said "I doubt it", and then I laid down. I wasn't prepared for the metal head trap of doom to come over me. And as I was wheeling back into the tube, the tech gave me the brilliant advice of "just listen to the music...don't count the booms". Don't count? Is he even slightly aware that counting booms plays right into my slight OCD? Hey then added "some people come out and have heard over 1,000." Ummm...now, I almost HAVE to count don't I?
I spent the first 30 minutes trying to focus on the music (I chose Dave Matthews Band). Ants Marching....34, 35, 36, 37....Don't Drink the Water....112, 113, 114...What Would You Say?...232, 232, 235....and then got distracted by an all bigger problem and annoyance. For the last week, I'd been getting over a cold and heading into the MRI, I was feeling pretty good. I'm not sure if it was the angle of my head in the metal ring of doom around it, but suddenly, I felt like I couldn't breathe properly out of my nose. I could only imagine what the tech was thinking as I started this strange swallow/sniff routine to try to save myself from passing out due to a lack of oxygen. Let's just say by this point, I wasn't counting booms anymore. I was trying to breathe. And no, it wasn't claustrophobia. I doubt if it was, I would have noticed how many little dots of some black stuff were right above my head (13), nor that there was a big scratch the kind of looked like a moon from a Van Gogh painting about 30 degrees to the right. Don't judge. OCD, I tell ya. But it was disconcerting to not be able to breathe because of my outgoing cold. It was more depressing when he came in and said I needed an extra 10 minutes because the pictures were fuzzy. Hey tech...you try to get perfect pictures when you have post nasal drip!
Before I knew it, though, the MRI was over, the IV was out, and I stood up. I gasped for air as if I had been deprived, and I could almost feel the post nasal drip subside. I stumbled out of the MRI room and retrieved the metal ring of Mordor so that I could remove my custom three piece suit and get dressed again. When I came out, I was informed that results would probably come from my doctor in 24-48 hours. We walked out together, said our goodbyes, and Elisa and I went our separate ways. As I drove back from the MRI to work, there were no more tears. Just a vision that I never expected. Sam and I, each on a gurney, each getting an embolization that neither of knew we needed and neither of us truly wanted. In truth, I wasn't sure if I had an AVM - I had been the picture of health for 35 years, so I was quite confident that I didn't have anything up there. But the thought that I could was daunting. And for that one moment, I stopped being Sam's dad, helping him in his journey. I was Sam. I realized the fear and worry that Sam never would...but that he should. A threat to something you never really worry about unless you have to - damage to your brain. And as I drove back to work, I didn't feel scared. Or sad. I felt paralyzed.
I'll spare you waiting for the next blog post to find out the results. The next day, I called Jamie MacDonald (of course I had to call...they couldn't do me the honors) and asked about my results. She looked them up while I sat on the phone in my office and stared out the window. She stated that the results were only preliminary, and she would absolutely call when they were official (she never did), but my MRI results were completely normal. No AVM. Just red birth marks, and the wonder if this was actually CM-AVM at all (I still hadn't gotten my blood drawn). I called Elisa first and told her the news. I wasn't sure what reaction I expected, but I was pleasantly surprised when her only reaction was that she was now left without a medical reason that explained me being clearly abnormal. I had to laugh. Count on Elisa to find the silver lining in a bad situation.
As for me, when I got home knowing that I didn't have an AVM, I immediately went over to Sam and picked him up. I held him close and whispered the only words that came to mind. The only words that seemed to matter in that moment. The words that continued to paralyze me, long after I realized that my brain was pretty damn normal. I whispered "I'm sorry". For he was carrying the burden that my blood potentially had caused...and that I had avoided.
And quite clearly, the world didn't seem like a fair place at all.
1 comment:
having had several MRIs of my own, I could SO relate to this, Brad....including all the thoughts that go along with the experience. This one got to me, buddy!
Connie
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