I have acquired a total of 3 stitches in two separate incidents prior to this in my whole life. Both were biopsies, prearranged and with local anaesthetic. Both were also almost 25 years ago. And so I have lived happily in the labs, hallways and cafeterias of the hospital most of my adult without ever having to be a patient. I thought I had filled my quota with my admissions for childhood asthma.
However, 5 or 6 years ago I noticed that I felt like I was slowing down, or getting old. I wasn't able to do everything that I was used to doing without feeling tired. I had had a habit of operating on 4 hours sleep most nights in order to get everything done, and so I thought I had just pushed too hard for too long, and accepted fatigue as part of getting older (yes, I have always thought 30 was ancient!). After I moved to Bermuda I noticed that it was even worse. If I didn't HAVE to do anything, I could lay in bed and sleep, something I had never done before in my life. For the first time, exercise was draining and something I had to force myself to do instead of doing for enjoyment. My niece Jaycena had been killed earlier that year, and it so damn near killed me as well that I just assumed grief was what made me feel so different. The following year I began to wonder if I was depressed and just unable to recover from that grief. I finally went to my general practitioner, and although my Calcium level was high, everything else was OK. That summer, as the sun came out and a new group of friends gave me the energy to go out, explore, and enjoy the island, I felt a lot better. When January came round again, I found myself lethargic and ready to sleep the month away again. When I ran out of prescriptions for my routine asthma inhalers, I had to go back to the Dr. Routine bloodwork again showed a high Calcium, and to his credit he forwarded me on for an ultrasound right there and then as the body regulates its Calcium like a cache of gold, and any variation indicates and endocrine problem. There are only a few possible scenarios. Vitamin D deficiency, non-symptomatic presentation of a MEN gene mutation, and primary hyperparathyroidism. The ultrasound was negative, meaning that none of the 4 parathyroid glands showed enlargement typical of hyperparathyroidism, nor would that be typical in my age group. Frankly, that type of adenoma is rare, affecting 0.03% of adults, typically after the age of 60. Vitamin D deficiency fits better with the case study of a Caucasian Canadian female in my age group. So the Radiologist referred me to the endocrinologist (Dr. Annabel Fountain in Bermuda who is great should anyone else find themselves in this predicament) who did further tests which indicated a low but not deficient Vitamin D level, increased parathyroid hormone production, and an obvious hypercalcemia. Since I did report feeling better during the summer, which fits with Vitamin D deficiency, it was thought that I could indeed just be a flower that needed lots of sunlight.
Nope. Monitoring of the levels showed that my calcium could dip up and down, but it never fell into normal range again. Parathyroid hormone levels decreased with Vitamin D supplements, but clearly the off switch was broken. Genetic screening was negative. Bone density scans showed osteopenia, proving that the excess calcium leaching out of my system was coming from the breakdown of my skeleton. My endocrinologist scratched her head at the non-classical picture that was emerging, and consulted with colleagues overseas, but the process of elimination, the only diagnosis possible was primary hyperparathyroidism, caused by a rogue gland that we could not see on imaging. The next step was to try a nuclear scan, to inject a radioactive dye with a specific target to see if one of the four glands might not be enlarged, but be hyperactive. It too was negative. Surgery is the only correction for primary hyerparathyroidism. With the information as to which gland needs to be removed, it can be a short surgery, approximately 2 hours. With no target, it can take up to 8 hours, and be unsuccessful, later requiring further exploratory surgeries. This is not a venture my endocrinologist wanted to send me off to with the information we had. And so we waited and monitored it for another year. The next bone density scan showed a marked bone loss. I still felt old and tired and not my old self. And so, because this is a low incidence illness, I was referred overseas to an endocrinologist at Massachusetts General Hospital in Boston, hence all the Boston trips in this blog the last few months.
I fell a little bit in love with Mass General Hospital. Every member of staff I dealt with had a smile on their face. There were no surly desk clerks, no short tempered responses to questions for directions from random busy people, I was never rushed out of an appointment like a nuisance, but instead every thing was carefully explained, and every person waited patiently after they explained in case I wanted to ask any questions. In addition to having a great reputation (MGH stands for Mass General Hospital, but when a radiologist here asked where I was having surgery and I replied MGH, he said "Man's Greatest Hospital, that's great news!"), the pride of labour and employee satisfaction shines out of every individual I encountered there. I told my family that I was happy to be in a place in my life that if I need surgery, that everybody in the room that gets to stay awake will at least have attended Harvard. My first Dr. was an endocrinologist, Dr. Guiseppe Barbesino, who again I would highly recommend. He personally performed another ultrasound to ensure that no adenoma was visible, reviewed results, and reconfirmed the diagnosis and the outcome. "You need surgery. You are too young to survive this disease." I had been on the fence on whether surgery would really be necessary, and if I could possibly avoid it, or delay it until it got bigger, just out of a general aversion to being unconscious (and terrifyingly out of control) and having my body cut open. It freaks me out a bit. I was not admitting it, but the idea scared me. A lot. But those gently stated words and a description of the complications that would damage heart and kidneys and make me brittle made me understand there was no real choice to make here. He carefully laid out a plan of action, and promised I would be referred to the very best surgeon there was for this type of surgery, and scheduled a 4DCT scan.
On my next visit to Boston, I went for the 4DCT Scan and meeting with a surgeon. The CT scan feels a little weird as the heat washes over your body, but I had been sufficiently warned of every sensation I would feel by the 2 awesome techs doing the procedure. They also let me know that this particular test had been pioneered by Mass General's very own Dr. Hunter, that he was the only person who read the scans, and that he was successful in 96% of cases in finding the adenoma. I later pulled up the research, and his paper was just published in July 2013, and so I was certainly receiving the most cutting edge technology available. After that it was off to meet the surgeon, Dr. Gaz, and I did so armed with my little checklist of questions to ask. While sitting in the waiting room, I noticed the sign "Department of Gastrointestinal and Endocrine Surgery, Mass General Cancer Center." What a strange place for my appointment, I thought, I don't have cancer. I just have some cells proliferating out of control. "Oh, crap," I thought, as the realization sunk in. The good news is there are some situations where cells go wild, but in a way that they are contained and not a danger of moving to other areas, and aside from office signs, they don't even warrant the use of the C-word because they are totally survivable and totally manageable. So much so that we just give them another name, like primary hyperparathyroidism. Dr. Gaz is considered the best by everyone I talked to, but, all my research shows that one should be certain their surgeon has done this type of surgery many many times. And so, after he explained all the complications, and also basically that they wouldn't happen under his hand, I asked him how many times he had done this before. The answer was "Nine-thousand, nine hundred and..." Good enough for me! I could only hope my question didn't come across as totally offensive at that point. I figured if it did, I would just wake up from surgery with a scar on my neck that read "10,001 and awesome," or something like that. But I jest. Dr. Gaz is incredibly professional and skilled, and every person I talked to pre and post op told me how very lucky I was to have him for a surgeon. He is know not just for successful surgery, but for leaving almost no scars, and for being protective and diligent with his patients. Once again, I was lucky to be right where I was. Dr. Barbesinso called me in the next morning to go over the results and Dr. Hunter had identified an area with 80% confidence where he believed I had an adenoma. While that is a long way from 100%, it was a heck of a lot further away from the 0% we were at earlier in the process, and a very good sign indeed.
In 2 weeks, I was back in Boston for surgery. Once this became a little real to me, that is when I started to feel a little vulnerable. I didn't want anybody else around. Initially I thought it would be fun to meet up with friends in the city, maybe have family fly out and visit, but the closer it came to it, the more I realized I wanted to hide away in privacy until it was all over. I knew I would eventually be more open about it, but I wanted to get it over with, alone, and as soon as possible. And so I swore my 5 immediate coworkers to silence and headed off quietly to Boston. I relented when a few friends and family insisted that someone be there in case of emergency, in case the anaesthetic left me queasy for a few days, or there were complications. So, who better than a nurse, who was available at the time, and who I had travelled and roomed with before. Enter Margaret, who came down after being warned I may be incredibly grumpy (in addition to my uneasiness about surgery, apparently disconnecting parts of the endocrine system can make you incredibly grumpy for a while, enough so that the handout tells you to warn your family and friends that your personality changes should not be permanent). She quietly flew in the night before surgery where we had a quick dinner at Foggo de Chau (this is a Brazilian steakhouse chain that you MUST eat at, just because it's fun. You don't order, you flip your card to green or red, and when it's green, you are bombarded by waiters with skewers of meat...it's literally a frenzy of people trying to feed you until you quickly flip the card back to red), and first thing in the morning it was off to the OR.
In keeping with my being impressed with Mass General, my surgery was scheduled for 11:45 and I was asked to check in at 9am. At 9:45 I was already being wheeled into the induction room, as the amazing Dr. Gaz had already completed his first 8am procedure ahead of schedule. No matter how good any facility is, the TV series Scrubs was so popular because it exaggerates some very true quirks of working in a hospital. Firstly, the lab is both reviled and feared by everyone in the hospital, mostly because I truly don't think anyone knows what we actually do. I have decided the last thing you ever want to do when anyone approaches you with a needle is to answer their question about what you do for a living with the words "I'm a lab tech." Nobody wants to insert a needle into a lab tech, and it is likely to induce shaking and require a do over, and the lab tech is not likely to be able to withhold from giving advice, which although successful, is probably not appreciated and would not have been needed had everyone remained ignorant to the profession of the patient in the first place. The second truth is that the best doctors have to be extremely confident, and there is a satisfying comfort in knowing that the residents are at least moderately afraid of the physician molding them. There is also a hierarchy that trickles down, the rewards of advancement being skill, the pride of surviving the earlier years, and the joy of knowing more than the newbie below you. I saw all of this play out as the team descended upon me in the induction room, the introductions being a little hard to catch, but "Hi, I'm the surgical resident," definitely got my attention amid the swab going up my nose and the needle being poked at my hand. "WAIT...resident? Are you scrubbing in on this? What part are you doing and what is Dr. Gaz doing?" Having worked many years in a teaching hospital and knowing how well the oversight and training goes, this really should not have been my response, but...it was out before I could think about it. "Well, it's not a one man job, someone has to clamp and stuff," he said. "OK, you may clamp," I said. While drawing the line on my neck with a purple marker for the incision, I knew that they would try to follow any natural crease to minimize the appearance of a scar. While feeling what seemed to be a really really long line being drawn, one person said, "I don't think your line is straight, see how it veers off there?" Bless him. However, when I said I didn't catch his name, "You are Dr.....?" the rest of the team were quick to respond. "He's not a DOCTOR, he's a medical student." So, knowing that he was just there to observe explained that my line was probably not straight yet following the perfect natural path. But I appreciated him speaking up, it takes a lot when you are the littlest fish in the pond. At that point I just laughed and said "This really is a lot like Scrubs. Doesn't the student get a name too though?" I am not sure if this is all comforting to other people, but for me, this is the most comfortable thing, and this is where I finally relaxed. This is the element I know and understand, and I knew that I was in excellent hands, that were not in the slightest bit worried about this procedure, because it was routine, normal, possibly even boring for them. As they wheeled me into the theatre, the student quietly leaned in and showed me his id badge "My name is Kutar," he said with a little smile. He deserved a name, and I am sure one day he will be a doctor with his own nameless minions to command. Next thing I knew there was an oxygen mask and I was being asked to breathe deeply to fill my lungs with oxygen, which I knew was a step before before they put me under, so I figured I had a few seconds left to prepare. On the third breath I realized I was getting no further warning...and finished that thought a few hours later in the recovery room.
The surgery was a success. The surgical resident stopped in to check on me and said all had gone well. I woke up without nausea. There was no hoarseness, which is good because the surgery can damage the vocal chords, but Dr. Gaz is too skilled for that. There was no irritation from the breathing tube. My nurse asked if I felt any pain and I said I can feel a little sensation on the left....and then I was asleep again for a few hours. Those IV meds are quick. The next time I woke up and was asked I just said no, and quietly ate my ice chips. Another hour later and I was slurping back a Venti Peppermint latte compliments of my private nurse Margaret, and settled in for the night with my Kindle and snack supply that Margaret had also brought. I slept away most of the day and night, and had a warning that Dr. Gaz's residents would be in very early to check on me, probably 5 or 6 am. At 4am, a nursing student was sent in to draw my morning labs. He too made the mistake of asking about my profession, which caused his hands to shake uncontrollably while he stared at the little x he had drawn on my arm in the dark. However, I did not have the side effect of being grumpy that they forewarned me about, in fact, although exhausted, I felt better inside than I had in years. And so at 4:30am, the old teaching tech side resurfaced and I patiently guided him through the second attempt and directly into a good vein, and then told the nurse who poked her head in how awesome he had just done all by himself. Reassurance precedes confidence after all. As daylight dawned and the hospital woke up, Dr. Gaz appeared in my room before I sighted any residents to remove the surgical dressing and replace the external stitches with steristrips. He gave me all of my lab results, intra and post operatively down to the picogram (knowing a lab tech would never be satisfied with anything less than the exact numbers rather than "everything looks good"), as well as the pathology report from the cryostat frozen section, and a disclaimer that the adenoma was trickier to find and deeper than expected, making him have to extend the incision, something he was obviously not happy about, being renowned for his tiny incision sites. No less than 5 minutes after he left, 2 young attractive men in scrubs skidded into the opening of my door, looking all of about 23 or 24 years old. Ah, my resident's have arrived, I thought. "Hi, we're Dr. Gaz's residents," they said, eyes obviously taking in the lack of a dressing on my neck that they were supposed to change, and the opened sterile packaging fresh on the bedside. "He's already been here hasn't he," the tall one said nervously. 'Yes, less than 5 minutes ago. If you run you may head him off at the next patient." "Thanks!" they said and they rushed off as fast as they could go. Another Scrubs moment, I thought.
A few hours later, I had my discharge papers and was cleared to go. It took a lot longer than expected, but I suspect they hung on to me because I was the easiest patient imaginable, fully able to disconnect myself from 02 sats, iv, and compression booties to move about, and be reconnected and sitting innocently in my bed when they nurse came to check why there was a beep on the monitor a few minutes earlier. When I was discharged, they would have to trade me in for another patient who probably needed a bit more maintenance.
When I left the airport, I saw this billboard for MGH Cancer Center while I stood in line at Dunkin Donuts at Logan International. It's a bit blurry, but the important part is this, "A partial list of amazing things Greg can do. Have coffee. Walk the Dog. Wash the car. Dinner with Janet." It made me smile. I have my health. Life is really that simple.
So, 2 weeks later, the dressings are off, and I have a thin purple line that will likely fade and look natural in a short period of time. My calcium levels have dropped, and instead of being high, I will have to monitor being a little low while my system recalibrates. When I start getting tingling and numbness, I reach for the calcium supplements, but this too should fade over the next few weeks. I have needed a lot of sleep in the recovery period. Like 12-14 hours, and after 4 hours of being awake I am ready for a nap. This too is part of the process. Medically, there is no guarantee that I will feel better, or more energetic, but the measurable complications of the adenoma have been thwarted. I am lucky enough to know another patient, a friend who went through this a year earlier, and she said within about 3 months she was feeling much much better. And so that's what I am hoping for. In the mean time, I just decided to tell this little but long story today with that friend of mine in mind who is going through their own medical experience. Because I know how draining the process is. That it makes you feel tired. Vulnerable. Irritated at the lack of answers, the lack of control. That it can change your mood and how you live day to day. And it's not something you get until you do it. I am thankful for the excellent care and expertise that was made available to me at Mass General. I am excited and hopeful to get back my old hyperactive exhaustingly busy self...she has been missed. And I am wishing the best news for a friend today.
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