I survived a brain tumor

I survived a brain tumor

Postby Samr on Sat Sep 01, 2007 11:00 pm

I know I've come here very infrequently over the past few years, but hopefully posting this update/story is still entertaining to a few of y'all! :)

For those of you interested, this is the abbreviated story (laugh, I know) of my brain tumor, which was diagnosed and surgically removed earlier this month. Today represents only the second day in nearly three weeks I have not been grounded by pain, so this post is a bit late coming (though admittedly, I first posted it elsewhere about two days ago). The experience itself was horrid, and I wish no one can ever relate. But, I would not go back in time and change it, not for anything in the world, because the experience has already taught me so much, and I know the lessons will only continue.

At the present, I am 19 years old, and realistically I should be dead right now. I did nothing to deserve or earn the privilege of my current situation -- Most people with tumors, especially ones that have gone undiagnosed for years, die. And I didn't. Believe in miracles? I certainly do. In fact, I think I experienced a few::

August 24, 2007.

Today I was given the best news ever: the lab reports show that the tumor removed from my brain on August 9 is not cancerous, causes no diseases or conditions, and is completely benign. Translated from the implications of this, it means, simply: I am going to live. That is better than the alternative, which on August 7th I feared would come true.

[Always one to over-prepare – a habit I think I inherited from my mother – I gave my last wishes to her and my step-father before surgery, just in case. I told her what I wanted to happen to me and my belongings in case I died. Also, I made two witnesses (they were strangers; I didn’t get their names), myself, and my mother, sign a Power of Attorney. This contract gave her the ability to make any and all decisions on my behalf in the event I entered a coma, or on was placed on life support, or in any other way not capable of a reasonable thought process. It also gave her the ability to make decision on my burial process, in the event it came to that. It was the worst, most morbid experience of my life and I hope no one anywhere ever experiences this. Lesson here: always be prepared]

The tumor had existed in my head, undiagnosed, for years. It could have been a bad kind – and the number of bad types far outweigh the number of benign types – doing damage and slowly killing me, and they wouldn’t have known simply because no one knew it was there. The miracle here is that my tumor defied the odds, which were heavily stacked against me. Simply because it was benign, the lack of a diagnosis does not make me angry. More specifically, the lack of diagnosis did not kill me. In fact, it almost certainly saved my life.

Only after an eye doctor visit on August 7th, when I was sent for an MRI, just as a precaution and not expecting the scan to find anything, did they see it. And it was big. The main tumor was only the size of a grape (there were several smaller ones and the surgery team had to use a microscope for those), but the cyst encasing it was the size of a lemon; it occupied, roughly, about a quarter of my brain cavity. It was so big it had actually, slowly over the years, moved my brain out of the way, and that is the second miracle: had the cyst been caught earlier, the doctors would still have done surgery. Except they would have cut through brain tissue to remove it. Then, there’s the potential for hearing issues and difficulty with balance (I talked to one brain doctor who actually had a similar tumor and operation; he is now clinically deaf in his right ear and he has trouble balancing – He can no longer practice surgery either), you could also lose eyesight, or memory. Those kinds of things are kind of important. In short, you are never the same, assuming you actually wake up, after they cut brain tissue. So you can see why I’m glad they didn’t have to cut through mine.

Here’s another fun part: the operation was supposed to only take an hour and a half, but I was open on the table for four. The reason was because the doctors had to be extra careful, due to a small surprise. Turns out, the team of doctors discovered only once my skull was open that the cyst was just two millimeters from the brain stem – basically the control system for your body. You damage that, and the repercussions are horrendous. This means when I went in for the first MRI on the 7th, I was (per the doctors’ best guesses) very, very close to a seizure, or going into a coma. Or worse. The thing could have killed me if I had gone on much longer without knowing about it. Just good luck? Maybe. But I’d like to think that was a miracle, too. I had every chance to die during this – if even one small thing was different I very well could have – but it is had become more and more obvious that someone wanted me to live. My reasoning is that you just can’t dodge that many obstacles without a little outside help. There was only one right road to take, and I know I wasn’t behind the steering wheel. (for the record: it wasn’t a fun ride, and I'm glad it is almost over)

Originally, the doctors prepared me for weeks of physical and occupational therapy either at an institute or at my house, being as the tumor was located in a place that effects balance, and both fine and gross motor skills. I am stubborn and impatient and I wanted out of intensive care. To prove I was ready to be released from the hospital, the physical therapist watched as I went up and down two flights of stairs with no help. And this was only four days after brain surgery -- Another miracle right there. Now, weeks later, I am walking, and talking, typing and seeing normal. In fact, I only have a few minor side effects: a quarter of my head is numb, my hearing is much more sensitive, and writing by hand is a slower process. No complaints from me. I think I got lucky.

And fortunately, once I fully recover, I have an almost certain shot at a normal life. I’ll be able to raise a family some day, with a wife, and kids, and teach them all the lessons that the experience taught me so suddenly. I’ll teach them that as long as you are healthy, and your family is healthy, life is always good, and you should never complain. I will teach them that there is nothing as important as a family that cares. Because they are the ones who will support you, and cry for you, when you are too weak to support yourself, and too worried to cry. One day too, I will be able to teach them that you need to take advantage of every opportunity, and to always make the best of what you have, because you don’t ever know when it all will come to a halt, like it did for me on the 7th. But the most important thing is, I will teach them that miracles do exist. I know, because in a matter of days, I experienced several. And I am alive and typing only because of them.


The morning of August 7th we were running late to an eye doctor's appointment so we stopped by a place for a hurried bite to eat. Unknown at the time, a doctor would find a tumor in my brain only two hours from then, and I would be rushed to the hospital for a surgery that would save my life (in more ways than one).

I woke up this morning feeling well, so we decided to leave the house, for the first time since surgery. At my request, we went to the exact same restaurant, and I wore the exact same t-shirt. Except today, we took our time to eat. Like I said, I'm kind of a bit stubborn.


Go Spurs Go.
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Postby Blondie on Sat Sep 01, 2007 11:04 pm

WOW Sam I am glad you are OK.............
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Postby tphuey on Sun Sep 02, 2007 5:03 am

Sam, I am very happy that everything turned out okay for you. Good things happen to good people!

Best wishes for a full recovery! We miss you on this board, and want to keep hearing from you!
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Postby missmyzte on Sun Sep 02, 2007 12:31 pm

An incredible story Sam, thanks for sharing. So glad to hear you're doing better and are on the road to recovery. There had to be moments in the pain where you didn't feel like you were being blessed by many miracles but clearly, from what you wrote, you were. Keep in touch here and let us know how you're doing.
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Postby ryno on Mon Sep 03, 2007 2:31 am

Well man your writing is as sharp as ever. What an experience. I can't even imagine going through something like that. My wife just had surgery on Friday, we just picked her up from the hospital today. Her procedure was far less intense than yours and it has been so emotionally draining. Your story is truly a miracle, its a good thing that god loves the Spurs. He knew they couldn't be without one of their greatest fans.

Sounds like you are recovering extraordinarily quick. I wish you the best of luck with your continued recovery.

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Postby kmgospurs on Thu Sep 20, 2007 10:39 pm

Wow amazing. Sometimes you don't think that these kind of things are going to happen to you and they do. I'm glad your going to be ok. Hope you get well soon and get back on your feet quickly :thumbsup: . It already looks like you've done a great job of that.
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Postby shrae_diggz on Thu Sep 20, 2007 11:41 pm

Sometimes life is a beautiful mystery... It is good that you are able to enjoy it and I'm glad that despite so many negative things drawn from the experience, your focus is always on the positive! You could call that being stubborn, I just see it as the right attitude to have. I'm a firm believer that if you think positive, positive things will happen, even in the bleakest of situations.
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where I am now

Postby Samr on Sun Sep 23, 2007 12:04 am

Since my surgery, I have had countless people (who have seen the true and extensive nature of my predicament) tell me that I need to turn the tumor story into a book. And I always respectfully dismiss them with the same answer (along these lines): "Yes, I'm going to write a book about it, but not now. It isn't finished. The story I write now will not be the same story I write a year from now. I want people to read the story I'll write five years from now. "

Right now, the story is constantly changing. On August 24, when I wrote the quoted text to start this thread, I was only 15 days removed from surgery. A hair over two weeks. It took me a full day to write those seven paragraphs because I'd have to take constant breaks to deal with the pain ( I vomited countless times from the intensity alone). I wrote those seven paragraphs at the start of this thread while my body was experiencing a kind of hell I thought was only reserved for people like mass murders and Michael Vick. I felt completely fine 8 days later when I posted the story on here.

On September 8, almost a month removed from surgery and 5 days after I posted this, I drove myself to my boss's wedding and even made it to her reception. I was feeling great, and thought I had finally finished with all the bad stuff. In fact, I had already scheduled my return to work for the following week and would have bet money I was finally "back." Good thing I didn't bet money, because two days later I was vomiting again, and had begun another downward spiral (but this time only toward a Tim Donaghy-level hell). I managed to write the following before I turned into an invalid again:



8.7.07

A month ago today. It was a Monday I will relive as long as I live. It was normal, and by that process, was abnormal all in itself. I will never forget that Monday. I hope. It was a great day.

I woke up that Monday morning at 7:35, ate some toast, took a hot shower, dressed into work slacks and a dress polo shirt, grabbing an energy drink from the fridge on my way out the door. I used to be big on routines and I would get disoriented if I broke them. This used to be my morning routine.

That day I did most of what my bosses asked me, harassed my co-workers for my amusement, answered absurd questions for parents, and over-exaggerated my expressions when I talked with the kids. I love my job – still do, even more – and this day was just like every other. And I loved it for it. But in just under a month, I knew I’d be back in college and had already begun to back my mental bags in anticipation. I went home that night without saying goodbye to the people I work with, and the kids I saw every day, because I assumed I’d get the chance to do that anyway when I left.

The upcoming weekend I was supposed to go shopping for my college apartment, where I was supposed to live starting August 25. I was supposed to graduate St. Edward’s in three more years with an English Writing degree, and then go to law school at St. Mary’s in San Antonio, and have a normal, simple life after I graduated and returned to work in the family business. I knew where I’d be three years from now, six years from now, ten years from now and maybe even twenty years from now. And I was happy, because I already saw the road in front of me. And I was completely content with driving it.


8.8.07

Location: Methodist Hospital, San Antonio

The surgeon had been notified I was on my way, and he was en route. He had already seen my MRI scans; I had not. I knew exactly and only this: I was going to the hospital, for at least a week, because the MRI had found a tumor that made some very intelligent and educated people very scared.

One doctor told me, “I am surprised you are alive right now.”

It completely knocked me off my feet. That knowledge, right there, completely knocked me off my feet a month ago today: that it was a miracle I was alive.

To go from living one day, in a place in life you enjoy, and thinking you had all the time in the world to tell everyone what they meant… to hearing that your mere functioning is a medical surprise, is a surprise. Going from being “normal” to being a “miracle” is the hardest part.


7.31.07

The fluid apparently left my head while I was sleeping, because I woke up that Friday morning without pain. It was the first day in three weeks I awoke with a smile. I’ve never felt so relieved. Three weeks, filled with one emergency return to the hospital, taking enough medications to make me feel full, and pain so intense, often, and exhausting and that I’d often throw up as a temporary solution. First person to make a bulimic joke gets puked on… oh wait.

Over those three weeks I made jokes, thinking if I laughed about my situation it would make it better, about how I wanted to “just crawl up under the porch like a cat and die.” Unfortunately, there would have been justification for it if the statement was serious: I couldn’t bend over because the blood would go to my brain. Someone else had to wash my head in the shower because it was numb. We had doctor’s orders to place a baby monitor in my room. I was to be never left alone for the first two weeks. I actually had to sleep sitting upright. For four weeks. (Yes, that’s right, today is the first day since I left the hospital that I am allowed to remove the “wedge” from my bed, which looks more akin to some medical torture device than a pillow.)

Also, for the first three weeks of recovery I was hydrocephalic (fluid in head didn’t drain down my spine) so I faced the possibility of another brain surgery for that problem. I was looking forward to that about as much as I was looking forward to the catheter they’d have to use again. Or the IV tube they’d have to stitch into my jugular again (a month later and I still have the scar). Or the “compression hose” (those white little f*** look like women’s pantyhose, damnit) I’d have to wear to avoid blood clots in my legs which could kill me. Yep, I’d have to wear those again too. There’s no such thing as humility in hospitals. Those assholes.

Relieved that it is all, finally, in the past? Yeah, but I’ll never forget it.


9.9.07

The doctors said I was lucky to be alive, at the time I was diagnosed. Then they said I was lucky to hear, and walk, and write, after I awoke from a surgery wherein the definition of “success” allowed “some complications” to occur. And then my brain surgeon cleared me to I walk out of the hospital, only a week after he rushed me into intensive care. In fact, he released me straight from the hospital to home, instead of to a predicted two-week stay at a rehab clinic.

Sunday today marks a calendar month since surgery, and I am currently doing better than a best-case-scenario. I can drive myself again, and go out to restaurants again, and yesterday I made it to my boss’s wedding. Before I went to the hospital, I made it a goal to be at her wedding. The day before I went into surgery, I promised her I would make it, even if I made it in a wheelchair. Sappy, yeah, but when you aren’t sure what you’re future holds you need something to shoot for. Yesterday, I drove myself to her wedding, and to the reception, and back home. Small steps, but steps nonetheless.

Today I awoke at 9:30 from the sitting position after managing to sleep for no more than an hour at a time (thank you, medication side-effects!). Then, I went downstairs to continue the process of eating back on the nearly 20 lbs I lost through surgery and the recovery process. Much of a lifestyle change? Yes, in fact, it’s been a laughably complete one. But if you went by what one doctor told me a month ago, I am lucky to just be alive. And you know… I think I’ll be happy to just go from there.



Funny how things change. I wrote that story September 9th, when I was feeling like I owned the world, and then wasn't able to leave the house again until September 18th, a little over a week later. Between 9/10 and 9/18 I was throwing up (this time from being legitimately sick) so often I took a plastic trash can with me as I walked around the house. I would sleep with it next to me in the bed. My temperature was between 99-101 degrees for almost a week, and I had a sustained heart rate around 125 bpm (I'm normally around 80 or so since the surgery). During that time, I also went from hearing my CAT scan was horrible and I probably would need a shunt in my brain (which would require another surgery and cause a lifetime of issues), to hearing my newest CAT scan was incredible and there was no chance I'd need a shunt at all.

The doctors said recovery comes in waves, as a series of ups and downs, not a consistent or predictable process. They said I'd have my days where I would feel on top of the world, and then a day later I'd be regurgitating my lunch at the bottom of it.

Two days ago, on 9/21, my mother and I traveled to Austin for business, and while we were up there we swung by my college and took my roommate to lunch (coincidence, his birthday was that day). I drove us the hour and a half up there, was excited and energetic when I saw my friends, and relished every minute we spent in the daycare centers. The trip was the single most revitalizing thing I've done since the surgery. I feel great again; I feel like I am recovered. Like I am, finally, genuinely, over all of this. I feel just like I felt on September 9. And I'm scheduled to return to work in a few days, just like I was on the 9th as well.

If I finished the book the last time I thought I had recovered, it would not have been complete, or truthful. Only a few days ago did we learn (through a radiologist friend who researched my case) that the doctors had essentially withheld from us the full extent of my situation. They didn't even tell us how bad it was once I was "well" and out of danger ("well," I've learned, is a relative term). The cyst/tumor had apparently already pushed some glands down into my spinal area, and build-up of fluid was so bad that she was surprised it didn't push my brain down onto my spine as well. Our doctor friend said, "I am surprised they didn't immediately drill a hole in your head to drain the fluid." The reality was that the hospital was shedding procedures and testing like a dog shedding hair in the in the summer (apparently, these tests would delay my surgery which is something I couldn't afford for them to do. It was a calculated risk). I was supposed to receive an angiogram. Didn't happen (thank God). I was originally going to be shunted immediately. Didn't happen. Even after the surgery we were still ignorant to the full extent of my danger.

So, the story is constantly changing, but right now I'm definitely on a good chapter. Probably somewhere around the middle, maybe a bit further. Who knows. But definitely nowhere near the end. Like I tell anyone who asks, a year from now things will have completely changed. I could very well still be in the beginning, for all I know. But, it's been an exciting ride. A long, painful, unpredictable and exciting ride. And five years from now, who knows. Maybe this story will turn into something worth reading, or maybe this is all just a forward to a bigger book. Or, maybe, it will never be one at all. I'm happy just to be alive to tell it.

As of now, I now know the ending did not come at the end of my topic post. And it won't be at the end of this one, either. But, this is where I stand today. I went Halloween shopping with my nephew earlier, and I should return to work in about three days. For now, though, my trash can is still beside me. Just in case. I hope it will all be worth it in the end.
Last edited by Samr on Sun Sep 23, 2007 8:47 am, edited 2 times in total.
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Postby missmyzte on Sun Sep 23, 2007 12:27 am

All the lessons in all the classrooms in the world can't compare to the lessons that life teaches you. I'm riveted by your story Sam and hope that you keep posting and keep us updated on how you're doing. Aside from your affinity for writing, I barely recognize you as the same guy who started posting on SC just a couple short years ago.

Congrats to your boss on her wedding.
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Postby SilverAndBlack4Life on Sun Sep 23, 2007 10:15 am

i hope you're doing better Sam. right now im a student at St. Mary's University and if you ever come for Law School, or just come to visit, i'd encourage you to look for Prof. Alex Hutchison. He is a survivor of a brain tumor as well and by far the best professor i have had at StMU
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Postby Samr on Sun Sep 23, 2007 11:01 am

missmyzte wrote:All the lessons in all the classrooms in the world can't compare to the lessons that life teaches you.


Nothing could be more true. I quoted this to make sure people read it.

Four years ago, when I started posting here, I would have completely disagreed with what Misti said. I thought learning only took place in the classroom. Shows where I was at the time. Now, I can't help but be thankful for the bad moments in life -- they're when I grew the most.

If I hadn't developed osteoporosis (this condition was discovered two years ago), I wouldn't have learned to find the courage needed to deal with my brain tumor. If I hadn't learned I could handle brain surgery, and the month and a half of painful recovery that came with it, I wouldn't be able to emotionally handle the fact that my grandfather was recently diagnosed with cancer and is going in for surgery this Tuesday to get some organs removed (hopefully, after they remove everything, he won't need chemo). I wouldn't have known what to say to him to make him feel better. I wouldn't have been able to relate with him on the possibility of not waking up again. Funny, because four years ago, I wouldn't have wanted to be able to relate to him. Now, I can't be happier about having known his fear.

I consider the tumor experience to be the best thing that has ever happened to me. Not because it was fun (I am serious when I say the recovery was hell as I imagine hell would be) or because it was interesting (the most complicated part of the whole ordeal was pronouncing my medications correctly), but because it made me grow up (I think). It gave me a perspective on life, and my life specifically, that I never could have gained by any other means. I think I learned a lot in the past month and a half... I hope.

That being said, though, I can't wait to get back to college in a few months. I can't wait to get back to a simple life again, where my only real obligation is to get to class every day. Where I will learn less in 15 hours, than I learned after August 9th, when I was in surgery for only four.
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Postby Samr on Wed Dec 12, 2007 9:21 pm

Ok, so, here's the deal:

There is now a book. So far, it is a long book (and funny as hell too). Substantial enough that I feel I now have adequate proof of concept, and have begun contacting literary agents so I can gain representation and thus an in with the larger publishers. I have motivation in writing this, and for once I am doing something for someone other than myself.

In the hospital, knowing there was a chance I would not survive the surgery, I gave my family a living will. I decided if I passed, my money and possessions would go toward assisting underprivileged families send their children to pre-school. Education during these early years was something I believed in strongly and facing the reality of a surgery which might kill me and a recovery which could leave me brain dead, I could think of no better cause.

So now I am writing the book with the intent of donating a significant portion of the sales toward the same cause. I want to write this book for the sake of helping children, and their parents.

I am no longer sure what kind of traffic this place gets, so I am not sure how effective this post will be, but if on the remote chance someone either is themselves or knows someone in the literary/book agent field, I cannot tell you how much I would appreciate it. Unfortunately right now I have nothing to offer other than a sincere thank you in the back of a book.

The following is the opening to the query letter I am sending to agents/publishers:

My name is Sam Reinhart, I am nineteen years old, and right now I should not be alive. Last August a chance MRI uncovered a brain tumor roughly the size of a golf ball, which was lovingly surrounded by a cyst roughly the size of a large lemon. It was every parent’s worst nightmare, and suffice to say it scared me quite a bit as well. I was scheduled for surgery only thirty six hours after entering the hospital, and the night before my operation I gave my mother a living will: if I died, I wanted all my money and liquidated possessions to go toward helping impoverished parents send their children to preschool. Unfortunately for the kids I survived, but the goal has remained nonetheless intact – now, I want to write a book, about my surgery, to raise money for the same cause.

In the past four months I must have told my story to several hundred people. It seems like everyone has migraines, or gets dizzy occasionally, or has had one of their eyes twitch for several seconds longer than it should. These were my main symptoms, but in and of themselves they are not entirely abnormal – everyone thinks they have a brain tumor, and statistics say that nearly every single one of them are wrong. It is human nature to fear the worst when part of your body goes astray. Well, this is the story of what happens when that migraine really is a sign of something worse, and when that right eye twitch should have raised a flag. I am nineteen years old and it has been four months since what should have been the last day of my life. This is the story of what it feels like to get that second chance.


The book is titled "Baby Steps." It's what I had to take.
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Postby Blondie on Wed Dec 12, 2007 10:19 pm

good luck with your venture SAM - hopefully you will connect with someone who can help you make it happen..........
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Postby txstr1986 on Thu Dec 13, 2007 2:50 am

Wow, congratulations on you accomplishement and good luck with the book.
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Postby Samr on Fri May 02, 2008 11:03 pm

ok, so sorry to bump an old thread, but I am not a fan of saying something and then not having it come to fruition. Plus, a few people here said I should keep y'all updated. I now have an update:

The book is "complete." Over 63 thousand words (which translates to 250-275 pages in a standard book), I completed the final chapter about a week or so ago. As a general rule of thumb, for every hour of writing I spend another 5-8 hours of editing that same text. Well, I am now going through a major re-read of the entire book to pound out the last of the errors. At this point, there are very few changes as far as overall content goes, and it is mostly just things like commas and minor changes in word choice and phrasing.

Sound boring? It is. But I could quite literally write another book on what I learned from writing this book.

I just don't like saying something is going to happen, and then not backing that up. Even if it is half a year later. Well, here it is. In maybe 2-3 weeks I will once again start contacting agents and editors, and this thing should soon get off the ground and off my laptop. What I realized was that a proof of concept was not enough, especially for a first-time author, and even more so for someone of my young age and relative inexperience. So I decided I would finish it completely, and then take it to the various areas (publishers, agents, etc). Though it will never really be "finished" in the way I would like it, at least it is now a legitimate, complete story to meet my standards. I hold them high.

I've been living in my own house now for about four months, down here by college. Going to school full-time, working full-time, and putting in 2-4 hours a night on the book, though I've pulled a few 16 hour days typing. It puts the smaller pieces into perspective, like writing articles. I miss when an hour or so would produce an armchair insight on Tony Parker or a joke about Shaq being fat. And that was only two years ago. It feels like it has been twenty.

As far as recovery, unfortunately I still have a slight bit to go, but it is only extremely minor things as far as improvements mentally that only me and my family recognize. I do not know how many times I have declared myself recovered; too many times to count in fact. I am not sure I will ever truly realize when I am "there." But, about a month ago I ran in the Race for the Cure (3 miles) and got a time I can actually respect (24 minutes). The doctors told me to expect my endurance returning around a year to a year and a half. After 8 months, I hit close to where I used to be.

But, at least I am "there" enough for an update.

Y'all take care. GO SPURS GO!!!
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