Day 458: Mount Washington

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In my mind’s eye, June 20, 2015 represented the end of an extensive journey back from a major operation. Long ago on the eleventh day of my recovery, I began keeping a log of the daily indicators of my progress, small steps all leading towards this late-springtime Saturday morning in New Hampshire when I would return to racing by competing in the Mount Washington Road Race and, upon reaching the summit, declare my recuperation complete.

Beginnings and endings make for nice stories, but they are sometimes just myths. Even as conditions improve and problems slip into the past, they still exist somewhere. Perhaps that is why alcoholics often still label themselves as such even after decades have past since their last drinks. My back will always demand my attention and vigilance, just as diabetics must continue to practice daily blood sugar management, as opposed to achieving their target A1C values and leaving their endocrinologists’ offices thinking they have wiped their hands clean of the disease. Not that I am complaining or feeling bad for myself; we all know that life could have dealt me a much worse hand.

Next week, I undergo a third back operation to correct what my surgeon terms an “extremely rare” complication related to last year’s procedure. Although I can run up the highest mountain in the northeastern United States, I cannot jog around the block or even go for a walk without significant pain. Go figure.

While this past Saturday was not the metaphorical finish line that I anticipated, the occasion still carried a significance. As I neared the summit, I remembered that exactly 15 months earlier I laid in a hospital bed unable to do anything more than slowly shuffle about the unit with my walker and a back brace. The days that I thought I would actually make it back to competitive racing were vastly outnumbered by the days I felt in my heart that I never would, but I always kept working and accumulating small daily indicators that I was inching back towards my old self.

Effort alone, however, is not enough, and I never would have gotten to this point without the help of many people, including my surgeon, Dr. Jean-Valery Coumans, my physical therapist, Sue Bloom, and most of all my wife, Joanne, who has experienced this saga from spending sleepless nights on a couch in my hospital room to waiting for me at the summit. Literally and figuratively, it was a long way back to the top of that mountain, and I could not have gotten there alone. We got this far, and will go even farther, together.



Day 366

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Today marks the one-year anniversary of my surgery. Because my spirits were so dismal in the days immediately following the operation, on day 11 I began writing a log of the small daily victories that marked my healing and recovery. While I was initially unsure how long I would keep it up, I have maintained the log to this day and have no plans to stop, not when I still have so far to go.

One year ago tomorrow, I strapped on my back brace, leaned on a walker, and shuffled slowly from my hospital room to the nurse’s station and back, flanked by my wife and a physical therapist. Due less to pain and more to my fear that the operation had not worked, I cried the whole way.

Going into the operation, I was under the impression that I would not need a brace. When I found out the surgeon was prescribing one, I angrily and defiantly informed the nurse that I refused to wear the contraption. Over time though, I became attached to it. While the brace was at first just a literal support, over time it took on a figurative role as well, sort of like my version of Wilson the volleyball. During the first two months of healing, my brace and I walked for hours and hours together, and during long walks when I was otherwise alone, unsteady on my feet, unsure of my present, and scared of an uncertain future, my brace was always there to keep me upright and give me the courage to keep moving forward.

On day 67, we walked the entire Boston Marathon route together. Shortly thereafter, my surgeon told me it was time to stop wearing the brace. Truth be told, I was sad to jettison my sidekick. Finding the brace by surprise in the house triggers a similar fondness to randomly running into an old friend in the grocery store.

My surgeon was astonished by how quickly I progressed in the first few months after the operation. “You will be back to your crazy workouts in no time,” my physical therapist told me last summer. Turned out she was way off. As I wrote on day 197, we are only somewhat in control of our destiny and life does not always unfold the way we might expect or wish for ourselves.

Setbacks have been plentiful. Activities that my surgeon said should be fine at the time, like swimming, remained intolerable until seasons after his timetable indicated. Some of the bone grafts were unusually slow to heal and for a couple of months we faced the legitimate possibility that they might never fuse. Once I got the green light to resume weight training, I hurt one shoulder, then the other, and had to leave the weight room once again while I rehabbed them. Raking leaves in the November twilight and rushing to finish before darkness, I swiftly walked into my leaf blower, broke my big toe, and ended up in a walking boot. My most recent MRI showed a bulging disk at the surgical site, a highly unusual complication, and the radiating pain down my leg has returned. What can I say, Robert Smith taught me a long time ago that life is neither fair nor unfair.

Before the surgery, I expected that my healing would plot out a linear trajectory with each week being better than the previous one, but quickly I realized that was unrealistic and a setup for disappointment. Real life has its downs, but thanks to good fortune, hard work, and help from many people, it also has its ups.

Although my ultimate goal remains to resume playing competitive tennis and I am working hard in a physical sense to make that happen, simultaneously I am doing my best to prepare myself emotionally for the possibility that it may never come to fruition. Although I remain light-years away from returning to the court, accepting the latter feels much harder – and much less likely – than ever achieving the former. Past opponents and fictitious foes have contract court time in my dreams and we battle it out several nights most weeks, and my wife does not know that I often tear up when I watch her own matches from the sidelines.

Recovery does not end once the surgical site heals. Despite all that has happened in the past twelve months, in some ways I feel like I am still at the beginning of the journey with a long and unmapped future ahead of me. One year ago, I was bawling on a hospital gurney awaiting my turn in the operating room. Today, I went for my first run outside in 18 months. It was slow, short, uncomfortable, and really, really difficult. And it was totally and completely awesome.

I Get Knocked Down

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The first six weeks of 2015 have been pretty rough for me. It started on January 4th. I made the fatal mistake of running down our wooden steps in just my socks. What happened, you ask? Well, I slipped and fell down the steps with such a thud that Jonah thought a piece of furniture had fallen on me! Luckily, the fall only resulted in a broken baby toe and a whopping bruise on my butt, but I was still pretty shaken up about it.

Just as I was healing from my trip down the stairs, I woke up the following Wednesday with my throat on fire and feeling feverish. My doctor told me to come in to her office so she could do a strep test on me. While the rapid strep test came up negative in her office, she took another swab and sent it to the lab. What are the chances that the second test would be positive? Well, apparently, they were pretty good – I had strep. I haven’t had strep since I was a kid, and boy, was this a bad strain. After taking a course of antibiotics, however, I started feeling better and thinking to myself that I was finally out of the woods.

How wrong I was! Just a week after recuperating from strep, I again woke up with another sore throat. This time there was no fever, and it was definitely better than the strep I had previously, but this illness along with a cough that is driving me crazy, just won’t seem to go away! Today I feel like I might finally be kicking this cold in the butt, but it has really wreaked some havoc on my mood.

All of these illnesses and injuries got me thinking – you know, I never really appreciated how wonderful it is to just be healthy until all of a sudden I wasn’t. I wish that I wouldn’t be so hard on my body when I feel like it has let me down. My body has gotten me through 36 (almost 37) years of life, most of which have been relatively healthy and safe. I should feel lucky that I can walk, swim, ride a bike or play tennis. Many people cannot do these things.

So, while the start to 2015 may not have been the best ever, I am determined not to let these past six weeks get me down. I love my body and everything it allows me to do. I will do my best to take better care of it, and that’s all I can do!

Warning Bells

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The following piece was written by KC, the mother of one of our patients.

I heard the faint warning bell early but didn’t really want to believe it. When she got in the car after a trip visiting a friend and asked if I noticed that she had lost weight, when she started to eat “healthy,” when she became “lactose intolerant” (really? since when?) and couldn’t eat ice cream, when chicken repulsed her– all of these behaviors I noticed. The running and working out increased but it was under the guise of getting ready for fall practices. I started to get nervous, but I kept waiting for her to get tired of the running, to get tired of reading labels. This was my daughter who never considered her size– who would happily try on any clothes– and only knew her weight when she went to the pediatrician. It was not until she told me her weight one morning, at which point I said, “Enough!” and then a week later told me, with what I thought at the time was a rather smug smile, that she had dropped another four pounds that I heard the cathedral bells tolling loud and clear.

I spent the next six weeks taking her to the pediatrician in the practice who was the most knowledgeable about eating disorders– mistake #1– I should have taken her directly to a specialist. She also began therapy with a psychologist who was finishing up her doctorate and had “some experience” with eating disorders– mistake #2. Being referred to Joanne as her nutritionist was the only step she made towards recovery in those first six weeks. I remember clearly my daughter’s initial visit to Joanne because it was the first time I felt I had an ally in the battle against the eating disorder. My daughter sat perched on the end of a chair with a sweatshirt and a down coat on clutching a cup of black coffee while I sat there sweating because it was so hot in the office. Joanne was extremely patient and kind while explaining her meal plan in spite of my daughter’s overt hostility. My daughter contained herself until she reached our car and then started to sob. Uncontrollably sob. Crying was nothing new in our house– she had been doing it daily for months– but looking back I realize it was the first time someone challenged the eating disorder, and it was angry.

The six weeks prior to my daughter entering a treatment facility were incredibly painful. I ate every meal and every snack with her when she was home. And it took her forever. Plus it drove me crazy the way she ate each meal– veggies first then protein then the grain. There were many forbidden topics in our house. No one could discuss exercise or bodies or food. What went on the plate had to be eaten. No one could say that he or she was full halfway through the meal. The list went on. And again, she cried all the time. At one point she confessed that prior to the meal plan, if she ate two apples and a bowl of soup as her food for the day she could tell herself at night that she had done a good job. I learned later that it was actually the eating disorder praising her. After she showered, I would find fistfuls of hair in the drain. She had a bald spot in the front of her head. We took the full length mirror out of her room. I packed up all the clothes that she used to body check and gave them to the Red Cross. She wore pajama pants, baggy shirts, and sweatshirts. Her behavior became child-like– she wanted to sit on my lap, sleep with me, wouldn’t leave my side. We could no longer go out for dinner as a family or a couple. It was far too stressful. When I was not with her, I worried that she was throwing her food into the garbage disposal– when she did come, no one could enjoy his meal– the tension and anxiety emanating from her was palatable. When my husband and I were finally able to get an appointment at Children’s for an evaluation, he expressed concern about her being taken out of school– not to be a part of the peer group. I had to bluntly tell him that our daughter was already gone, and the only hope we had to get her back was residential treatment.

It was frankly a relief when she finally entered treatment. I can honestly say that I could not handle her disorder on my own, and she needed good professional care. Picking the treatment facility is a personal choice, but I am very glad she landed where she did. Her case worker was incredible, and the women who managed her daily were loving but firm. She stayed for a period of time, and we began to measure the success of a day by how many boosts she had to drink or not. I’d like to say that she came out of treatment fully recovered but that was, of course, not the case. I was extremely lucky to be able to put together a post-treatment team for my daughter whom she embraced and respected. Her school was incredibly supportive, but I have heard horror stories where schools have not been. Families who have been told that no allowances would be made– it was either sink or swim. I will be forever grateful to her school administrators for working with and not against my daughter. An acquaintance whose child was a recovering anorexic visited with me while my daughter was in treatment. She imparted some wisdom which I found to be extremely helpful. One, it is not her fault. Two, following the meal plan and finishing her meals is non-negotiable. There is no negotiating with the eating disorder. And finally three supports, love, prayer (if that is one’s thing), and food will help to battle against the eating disorder.

It helped me to think of the eating disorder as a separate entity from my daughter. A few months after she got home from treatment, I made a flippant comment, and she laughed, really laughed. It was her first spontaneous expression of joy in months. I am so proud of her because she has worked incredibly hard to separate herself from the eating disorder. She has listened to her team, gone to therapy, followed her meal plan, and found books on her own to study. She has also developed a spiritual side to her personality which in our barely-go-to-church-on-Christmas family is a wonder to see. She has embraced her treatment and truly wants to get well. Does all this mean she has fully recovered? No, she has not. There have been setbacks, but I am extremely hopeful that she will live a full joy-filled life which has no room for an eating disorder.

Day 67: Marathon

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Boston Marathon starting line, Hopkinton

Selfie of my feet at the Boston Marathon starting line, Hopkinton

A little over a month ago, my surgeon gave me permission to slowly ride the recumbent exercise bike and perform basic upper-body resistance movements with light hand-held weights. The doctor’s clearance for new exercises is mandatory, but so is my body giving me positive feedback in response to said activities. Unfortunately, I only had one of the two. After a few times of giving these exercises a try, my back pain seemed to worsen, so I put the bike and weights on hold and returned to exclusively walking.

Because several walks in the range of 12 to 16 miles felt fine and left me feeling like I could have done more, I decided to go a bit farther today. Early this morning, my back brace and I took the first commuter rail train of the day out to Ashland, where I met the taxi that then dropped me off in Hopkinton, right at the starting line of the Boston Marathon. 7:28 later, I walked across the finish line in Copley Square.

Boston Marathon finish line, Copley Square

Boston Marathon finish line, Copley Square (Photo courtesy of a tourist who was nice enough to take my picture after I told her I had just finished walking the entire route)

Looking the Part

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Wow, I am hard pressed to remember an instance when something I read made me as angry as Juliann Schaeffer’s article in Today’s Dietitian entitled “Dietitians and Their Weight Struggles.”

In summary, the article contains quotes from dietitians who offer their opinions as to whether or not a dietitian’s weight and appearance should matter. Although the piece improves at the end when some sanity and rationality is injected into it, the beginning quotes from one of my fellow dietitians are so shamefully off base that I feel deeply embarrassed to be associated with her.

“If someone has a weight issue, then in my opinion, they should choose a specialty that does not conflict with being overweight.”

“If you can’t make it work for you, how can you make the case for someone else?”

“. . . the reality is that health care is a business, and people do judge you by appearance. Is it right or wrong? That doesn’t make a difference. It’s a business, and it is what it is whether we like it or not.”

“I wouldn’t think much of advice from a cardiologist if I knew he had had a heart attack.”

So wait, are we dietitians supposed to list our BMIs on our resumes and websites now, or how does this work?

It is one thing for some personal trainers, chiropractors, life coaches, “nutritionists,” therapists, doctors, and other dietitian wannabes to go outside the scope of their expertise and give harmful dietary guidance, but when an actual dietitian represents the profession the way she has there is just no excuse for it. This is our wheelhouse. We should be better than that.

When I was an intern, I had a rotation in a bariatric surgery clinic where two dietitians worked. One was heavier, one was leaner. Some patients did not want to work with the heavier one because they questioned, “Look how heavy she is; how can she possibly help me?” Yet other patients did not want to work with the leaner dietitian because they worried, “Look how skinny she is; how can she possibly relate to what it is like to be fat?”

Last year, a new patient told me she almost cancelled her appointment because she was intimidated by what a “great athlete” I was. Just a few months ago, another new patient came to me all impressed that I had “beaten cancer.” Well, no, I did no such thing. She had misunderstood my online autobiography. When I told her that, she deflated like a balloon.

Let’s get real for a moment. The whole notion that a practitioner has to look or behave a certain way in order to help patients is incorrect. Out of all the questions I asked the surgeons I met with before my most recent back surgery, I never thought to ask who among them has back problems. But I should have because if a surgeon has back problems then it is logical to conclude he or she cannot help me with my issues, right? Or wait, I want a surgeon with back problems because he or she can relate to my experience, is that how it goes?

How about just finding the surgeon whose approach, experience, and demeanor made me feel most comfortable and confident? I know, crazy me and my outlandish notions.

During my first year as a personal trainer, few members were interested in my services. Although I had good relationships with many of them and they routinely asked me questions about exercise, few were willing to cross the line of actually hiring me. However, after I took two months off to ride my bike across the country, suddenly members were booking sessions with me left and right and my boss began to refer new clients my way, too. Other trainers treated me and my opinions with more respect. The gym even gave me a raise without me asking for it.

Come on.

Sure, more money and clients were great, but the driving force behind the upturn in business was so ridiculous that I felt insulted. It took riding my bicycle 4,000 miles, up and down mountain ranges, through all sorts of weather, for my expertise to be recognized and taken seriously? The ride did not make me a better trainer. If anything, I was a worse trainer after my trip because I was rusty from not having worked in two months. But hey, perception is all that matters to some people.

Right now, I have a patient who wants to be a CrossFit coach and feels she needs to lose 15-25 pounds in order to be taken seriously by potential clients. Sure, she has room for changes in her lifestyle, just like we all do, but she generally eats well and takes great care of herself. As disappointing as it is for her to hear, it seems her body just naturally belongs 15-25 pounds heavier than she would like it to be. Do I push her further down the path she feels obligated to follow, risking perhaps disordered eating or an eating disorder, as she sacrifices health for a number and a look, or do I guide her towards the reality that she can be a great trainer no matter her weight and appearance?

Due to my surgery, it has been seven weeks since I lifted weights and did any physical activity in earnest. Muscle atrophy is setting in. My shoulders and chest are smaller. My six pack is gone.

Am I a worse dietitian now than I was two months ago?

What if you did not know that major surgery had affected my fitness and you came in here and saw a scrawny dietitian without any context? Would you have less confidence in me than if you knew about my operation?

What if I had not undergone surgery and I just decided to take two months off from working out?

What if I had a healthy relationship with both physical activity and food, but my body just happened to be thinner, less muscular, or heavier than society feels its dietitians should look? Would you go elsewhere?

I have blogged about my athletic accomplishments, such as my mountain running, on a small handful of occasions because it can enhance patient care for them to understand that I am a human being with a life outside of this office and I face challenges just like everybody else. Perhaps patients garner some inspiration from those postings, but if anybody reads one and then comes to see me with the mindset, “Jonah is thin and Jonah is an athlete; therefore, he can help me,” God, that would just make me want to take all of the posts down. I just cannot be part of that act.

The purpose of self-disclosure is to enhance patient care, not to serve as an advertisement, not to capitalize on misconstrued ideas, and certainly not for a practitioner to defend or justify his or her behaviors or body shape.

I disagree with the notion that health care is a business. The first priority should be patient care, not money. If the dietitian I quoted earlier had her priorities in order, she would be helping to reeducate her patients and change a culture of misunderstanding rather than playing into it for profit. Giving people what they want and expect for the sake of financial reward does not justify providing poor care and perpetuating a myth.

Or maybe I should just play along and take up steroids, lest patients go elsewhere because I no longer look the part, right?

Come on.

Day 26: Mindful Movement

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This morning I went for a 14-mile walk, which was miles farther than I had intended when I left home. Carrying my MBTA pass with me, my plan was to walk from station to station in Newton and then take the green line home whenever I got tired. But the fatigue never came, so I ended up walking home instead.

This afternoon, I called my surgeon’s office just to make sure it is okay that I am walking that kind of distance at this point in my recovery. They told me that 14 miles has to be some sort of record for this soon after major back surgery, but as long as I am feeling good (which I am) then they see no problem with it.

Joanne and I talk about mindful eating with our patients, but the concept of mindfulness extends beyond just dietary habits. Adjusting mode, frequency, duration, and intensity of physical activity yields all sorts of permutations of movements, and our bodies are great at giving us feedback regarding which ones work for us. We just need to make sure we listen.

Approaching physical activity with a spirit of mindfulness means paying attention to and honoring the feedback that our bodies give us in response to our movement choices. Today, for example, I was fully prepared to end my walk as soon as my body told me it was time to stop, but instead I felt great so I honored that and kept going. Yesterday, in contrast, I was hoping to go for a long walk, but my left heel felt uncomfortable just a couple of blocks from home, so I turned around and called it a day. Although I was disappointed to go home early, better to nip whatever it was in the bud and let it heal immediately, rather than push it and risk a long-term injury.

Besides injuries, other consequences can arise from not being mindful with our movements. We risk increased stress, overtraining, undertraining, burnout, and simply not enjoying ourselves. Although I was never the type of personal trainer to push my clients past the point where their bodies were telling them to stop, holding myself to the same standard and listening to my own body’s feedback has been a challenge at times, and I have paid the price via overuse injuries and getting sick of activities I once enjoyed. Moving our bodies can, and should, be fun.

Given my personal challenges, I consider yesterday’s aborted walk a greater accomplishment than today’s 14-mile trek. By listening to my body and honoring its signals, even as it was telling me something I did not want to hear, I put myself in a position that made today’s walk possible.

Day 15: Acceleration

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A few years ago, I spoke with a woman at the gym about the time she had to take off from work for cancer treatment. Upon her return, some of her co-workers treated her as if she had been on vacation, which infuriated her. As she explained to me, and I know first-hand, there is a big difference between using vacation time and going on medical leave.

Spending all day on the couch watching television might be fun and relaxing when you do it by choice, but being forced into it because there is virtually nothing else you are capable of doing is an entirely different matter. My first week home from the hospital was the slowest seven-day span I can remember.

As that first week came to a close, I made the decision to focus less on what I could not do and to instead emphasize the small indicators of progress that came with each passing day. Each evening right before going to bed, I wrote myself a quick note about what I had accomplished that day.

My whole perspective shifted. Powered by a more positive outlook, I have nudged myself to do just a little bit more each and every day, and the results have come at a rate so accelerated that I never would have expected it. Just one week ago, for example, I went outside for the first time after my operation and slowly shuffled around the block with Joanne’s help. Today, I walked six miles by myself.

Yesterday was my first post-operative appointment with my surgical team and they could not believe how well I am doing. They were floored that (1) I am already off of all of my pain medications, and (2) that I have been off of them for a week already. My baseline fitness going into the operation and my generally-healthy diet, they said, are likely significant factors into why I am recuperating so quickly.

That is probably true, but I like to think that my resolve to get off the couch and do something productive with my days also has something to do with it.

Day 11: Small Victories

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My spirits have been pretty dismal, to be honest. As somebody who values independence and taking care of myself, being stuck at home and needing my wife’s help for nearly everything I do has been sad and depressing.

On the other hand, I am mindful of my own advice: long-term success grows out of patience, perseverance, and the tempered resolve to wake up each morning and inch just one day closer to the goal. With that in mind, rather than focus on what I cannot do right now, a much more positive mindset is to focus on the small indicators of progress that have come with each passing day:

Day 7: I was able to get up and sit at my computer for the first time since my surgery.

Day 8: I was able to step outside for the first time since getting home from the hospital.

Day 9: I was able to walk around the block by myself.

Day 10: I was able to go for two walks in a single day.

These are basic activities of daily living that never would have crossed my mind as anything special before my surgery, but now they are small victories showing me that I am well on my way to regaining my freedom and independence.

Day 7: Picking My Poison

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Given the dearth of diversity in the NHL, I was surprised to turn on the Boston/Montreal game the other night and see two players of color skating side by side. Upon further inspection though, I realized I was not seeing two teammates; rather, I was seeing a single player twice due to double vision.

The days since my surgery have been a constant struggle of picking my poison between the direct effects of the surgery itself versus the side effects of the drugs designed to cover up the former. These side effects go well beyond just double vision. My constipation was so awful that the hospital staff felt compelled to pursue it aggressively, which resulted in overtreatment and approximately 30 bouts of diarrhea in a 24-hour span. The nausea was so stubborn that one of the most powerful oral medications they could give me did little more than to turn down the volume just a little bit. My sleep and concentration were both so disrupted that I had difficulty discerning actions that happened in real life from those that occurred in a dream state. Dizziness kept me in bed. A lack of appetite kept me from consuming the nutrition my body needs to heal.

Given these side effects, yesterday I made the decision to stop all of my pain medications except for over-the-counter Tylenol. My clarity and nausea have both improved somewhat (Although later I will likely realize that this entry is filled with typos and lines that make no sense.), but now I am dealing more directly with the aftermath of the surgery itself. The pain keeps me horizontal and unable to sit or stand for more than a few minutes at a time. As a result of a chronic low-grade fever, which the surgeon tells me is fairly typical after an operation like mine, I alternate between bouts of chills and sweats. When I’m really lucky, I simultaneously experience both.

Joanne is right when she tells me that my first experience with back surgery probably set me up for false expectations this time around. Although the aftermath of my first surgery was long and difficult from a psychological standpoint, physically my recovery was rapid. After just a couple of days in the hospital, I was discharged to my parents’ house. Just one week later, I was back on campus at Tufts and resuming classes.

This time around, my recovery seems to be on a much different trajectory. Then again, the procedures themselves, while on the same part of my back, were quite different. Last time, the surgery was little more than a resection of the tumor. This time, the surgeon used rods, screws, and bone grafts to reconstruct a portion of my spine.

I need to keep my expectations in check and remember to heed my own advice about patience, perseverance, and waking up each day with nothing more than the simple goal of getting one day better before going back to bed and doing it all over again.