I had no idea.
On November 18, 2012, I published the first entry of this blog. A week earlier I learned my cancer was growing.
I decided to write about “My Life With Brain Cancer” for a number of reasons. At a basic level I wanted to chronicle my experiences for myself and others. On another level, I hoped to feel sense of catharsis through writing about it. Also a large part of me wanted to inspire others dealing with brain cancer or other difficult obstacles in life. I thought I could begin to give back to others and raise awareness of this terrible disease by writing about my experience. Given where I was at that point, what I had accomplished since being first diagnosed, and where I hoped to go, I felt almost a responsibility or obligation to reach out to others. I thought I had a pretty good handle on things. I suppose I did at the time.
When I wrote the first entry entitled “Beginnings” I had been living with brain cancer for 8 years. I had been living with brain cancer in the sense that I had been living with a cancerous tumor in my brain. But, really, I had no idea what it was like to “live” with brain cancer. I thought I did. Now, that seems foolish and naive.
Certainly, I had no idea what my life with brain cancer would become. I suppose I had an idea of what to expect if things took a turn for the worse. I talked with others worse off than me. I read about the experiences of others; and to be fair to myself and those close to me, there were some tough and difficult times over the years. My initial chemotherapy treatments were difficult to say the least. Emotionally, the diagnosis of terminal brain cancer was tough. It took years for Linda and me to come to terms with it. But this, this is different. This “life with brain cancer” . . . I had no idea. I really had no idea.
Even now, a year after learning my cancer is growing again, after 6 weeks of radiation and chemotherapy, after 4 additional cycles of chemo, after brain surgery, months of steroids, learning that my cancer progressed to a stage IV GBM, and trying to wrap my mind around a 15 month life expectancy, I am only just beginning to appreciate “life with brain cancer.”
I do know a lot more today than I did in November 2012 and a whole lot more than I did in 2004 and 2005 when first diagnosed and treated. I know enough now to know I am going to learn a whole lot more whether I want to or not. There is no stopping this train I am on. It is simply a matter of how fast it is going to travel before it wrecks and how bumpy of a ride it will be.
For years I thought I was “living” with brain cancer. I was living. And I did have brain cancer. But for the longest time, the cancer did not have a significant impact upon my life. At some point, a couple of years after my initial brain surgery and chemo therapy, living with brain cancer became just living. I took Keppra, an anti-seizure medication everyday. I got an MRI of my brain every 3 months. Neither bothered me much. If I forgot to take my Keppra, I might get a little visual disturbance from a small seizure. Every week or so I would get one anyway. I always viewed them as a subtle reminder that I did have a brain tumor, because other than those infrequent mild visual seizures, I was “kicking ass and taking names.”
I rather enjoyed my MRI appointments. I slept during the actual scan and after, Linda and I would get some breakfast together before heading to the Neurosurgery Clinic to view the scan and discuss the results with the doctor. Until November 12, 2012, the results were always great. Incredibly, my tumor seemed to look better each time making the appointments incredibly positive experiences despite the fact we were looking at a cancer in my brain. Afterward, we usually stopped at Starbucks to relax and celebrate life before we each headed back to work.
I worked hard and played hard. Men half my age couldn’t keep up with me. That was my living with brain cancer for years. The cancer was always present in the back of our minds, but we kept it there. Most people who knew me didn’t know I had brain cancer. For the most part, I refused to recognize it myself. Just a year ago, life with brain cancer was running a marathon at a 7 minute mile pace without feeling tired or finishing an Ironman triathlon in 12 hours and drinking beers while I watched the rest of the field finish for the next 5 hours. I was enjoying a smooth ride on a slow moving train. At times I let myself believe the train had stopped.
Life is different now.
Today, I walk with a limp because I can’t lift the toes on my left foot as I have lost nearly all the strength in my left calf. Apparently it is the result of some brain swelling that occurred before and from the surgery. Hopefully, I will regain most if not all of the use of my left side at some point. Because of the different body mechanics involved I actually find it easier to slowly jog than to walk. But, for other reasons, that isn’t easy either.
For the past week, on a couple of mornings I have been able to muster up the strength to do a very slow 3 mile jog with Linda. “Jog” is an overstatement. It is more of a trot usually intermixed with a shuffle. I am physically unable to do more. One of the reasons is my blood levels are shot. I am anemic, my platelets, hematocrit, and hemoglobin have plummeted. No one is sure why. There are a couple of theories but no good thoughts on how to get my blood back to normal. The bottom line for me is the low levels make me incredibly weak and tired. Most mornings, after a couple of blocks of my jog/trot/shuffle I feel like my chest is going to explode as I gasp for air. My lousy blood counts also significantly limit my treatment options. Not that I have a lot of options anyway, but when your life expectancy starts to get measured in months rather than years, additional options would be nice. More important to me at this point, I would prefer to go through those months I have left with some energy rather than feeling like I am going to pass out every time I walk up a flight of stairs.
Compounding the destruction to my body by the surgery, radiation, and chemotherapy is the steroid I have been taking since July. The first week of July the doctors placed me on Dexamethasone (also called Decadron or “Dex” for short) to reduce the swelling in my brain caused by bleeding and treatment. Dex is both an effective and evil drug. It quickly reduces brain swelling. Almost as quickly it destroyed the muscle tissue in my arms and legs. This is another reason why I am physically unable to do anything more than a walk/trot/shuffle for more than a couple of blocks. I simply lack the muscle strength to do anything more. My leg muscles have deteriorated so much that most days I can’t walk up a flight of stairs without pulling myself along grasping a banister. Dex also caused other body changes. It made my face swell up like a balloon (a condition referred to as “moon face”), it created an accumulation of fat on my stomach, back, and neck, it causes my stomach to bloat at times and my digestive system to shut down. Sometimes I have an insatiable appetite, others I have no appetite for days. My hands and feet tingle all day like they are “asleep.”
Speaking of sleeping, it is an elusive concept while on Dex. Despite the complete exhaustion Dex causes me during the day, I am lucky to sleep more than 2 hours at a time during the night. Making matters worse, while on high dosages of Dex, in the middle of the night I frequently experience an onset of incredible pain in my knees, ankles, and elbows. Some nights the pain so intense it literally reduces me to tears, like an intense gout attack in each of the six joints. I lay in misery unable to move as my joints ache, throb and cry out at the slightest touch. Try sleeping without allowing, either, knee, elbow, or ankle to touch anything. It is not possible. I know. I tried without success, intense pain proving my failure.
On the mornings following these Dex attacks, after I pull myself out of bed, crippled by the pain I am unable to walk without help for an hour or two. As I grasp the wall and hobble the 50 feet down the hallway from our bedroom to our kitchen, running a marathon in a couple of minutes over 3 hours or finishing an Ironman seem a lifetime ago. It is hard to believe it was just a year ago. That was living with brain cancer then. This is living with brain cancer now. I had no idea.
I have tapered down from high doses of Dex three times now. The first time was in August when it was hoped that I could avoid surgery. The significant negative impact Dex had upon the quality of my life was part of the reason we decided to proceed with surgery. After the surgery it was necessary for me to again take a high course of Dex in order prevent post-operative swelling. Fortunately, in short order my doctors tapered me down off of the drug over a couple of weeks. I was completely off of the drug for just a few of days, feeling better than I had in several weeks when, after consulting with a hematologist, they decided to put me back on a high dose in an attempt to get my body to produce platelets. I wanted to cry. I had just started feeling somewhat “normal” again.
After a couple of weeks of no sleep, painful Dex attacks, further muscle deterioration in my arms and legs, increased “moon face” and no real improvement in my platelet level, I convinced them to taper me down again. It didn’t take much. At that point there did not seem to be a good reason to keep me on the drug. It was starting to completely destroy the quality of my life with no real benefit. When life is measured in months, the emotional toll from the weeks spent feeling they way that I have is far worse than the physical hell I simply endure. Although I desperately try to live in the moment and enjoy the ride, when I struggle to walk up a flight of stairs, or simply walk at all, I can’t help but to think “time is a wasting.”
. . .
I started writing this blog entry a week or two ago. I am not a fast writer nor do I have a lot of time to spend writing. Normally, my current daily life events are not relevant to what I am actually writing about. Consistent with the theme of this blog entry, life is different now. It threw me another curve. I thought it might be good to insert some “current events” and then continue on with where I ultimately wanted to go with this entry. I am currently writing from Neurosurgical Intensive Care Unit of University Hospital. A couple of days ago I was admitted to the the NIICU with what started out as a little indigestion and diarrhea the night before and quickly moved to vomiting, high fever, and delirium by morning.
By midmorning I was basically non-responsive. Linda called my brother to help get me to the hospital. I don’t have much memory of the day. I know that I was surrounded by medical professionals constantly who were very concerned. My temperature rose perilously close to 104, my white counts dropped dangerously low, and my red counts continued upon their downward spiral. Nothing was looking good. How or if this was related to my cancer and treatment is unknown. What I do know is it scared the hell out of me and everyone else. Everyone else because I was rapidly moving toward demise if things didn’t get under control, me, because I don’t know how I got there. If my immune system is that weakened, I will need to be all that more careful and balanced in how I live.
After a 4 day stay in the NICU, it looks like I will be discharged tomorrow. I have been on massive IV antibiotics, white blood booster drugs, poked, prodded and stuck with multiple needles, shots in my stomach and a PICC line which is basically a blood catheter that runs from my bicep to my heart. Truthfully, none of it bothered me much. None of it except I am back on a high dose of my nemesis Dex. The hematologist feels keeping me on a high dose until mid next week will help rule out some reasons why my blood counts are remaining so low. If they continue to remain low through mid next week he has agreed to let me taper down yet again. I will undergo a bone marrow biopsy. He said it is painful. I told him given what I have been through thus far, I am not worried. Where we go after that I don’t know.
Life is different now.
I suppose the one good thing out of this brief interruption to my life is I was able to get an MRI of my brain. GBM’s can be extremely fast growing tumors. That is why they can kill you so quickly. One theory as to why I am having trouble with my blood levels relates to fast tumor growth. I haven’t had an MRI since immediately after my surgery. I have been a little worried that my cancer was starting to rapidly grow. Fortunately, the MRI showed that not to be the case. There may be an area of new growth, but it is a little early to tell yet. The bottom line is that my brain is not riddled with new tumor. My neurosurgeon is O.K. with the scan at this time. If he is, I am, though the area of enhancement concerns me.
They rushed me into the NICU on a gurney puking, delirious, and with a fever near 104. I walked out 4 days later after two blood transfusions, massive amounts of IV antibiotics and with no real explanation as to what happened or why and back on a high dose of my old friend Dex, for the 4th time, in a renewed and more urgent attempt to stimulate my bone marrow to produce blood cells.
And so goes my life living with brain cancer. As I said before, I had no idea. Back to rest of the story.
. . .
I pushed myself my entire life. “Driven” does not describe my odd behavior over the years. Maybe my DNA is just different. From a young age I thrived in adversity. I rarely took the easy path. If there was a way to challenge myself I seized it. I gravitated toward that which seemed difficult or impossible.
As a young kid I played baseball. I was pretty good at it. Better than most. Excelled at every position. I enjoyed it. Baseball came natural. My dad grew up wrestling. As fathers do, he encouraged me to wrestle. I joined a wrestling team but never became good at the sport. Built like a beanpole with the body strength to match, a natural I was not. I competed in both sports for a couple of years but my heart remained true to baseball. It did until the summer of 7th grade when I lost a wrestling match I knew I should have won. After the match, I stormed out of the gym, ran to the nearest pay phone, still dripping with sweat called my baseball coach, and told him I quit to wrestle full-time. From that point forward I never stepped on a baseball diamond again.
Despite years of working myself to death at wrestling, routinely staying for hours after practice to work on my strength and conditioning when all others were at home, living and breathing the sport for years, I never came close to the success at wrestling I obtained in baseball as a 5th grader. In fact, in the final week of my senior year of high school, I lost in a wrestle-off and did not even make the team for the final match of the season. Through all of the years of frustration, tireless work, and ultimate failure, I never once regretted the decision to take the more difficult path. I thrived on the challenge. It served not as discouragement but as intensified motivation and strength for future struggles.
Years later, after dropping out of college at CSU, I joined the Navy. The nation just a few years removed from Vietnam. Not surprisingly, my decision to enlist was not popular with the folks. I didn’t help matters that I came home from the recruiter and informed them after the fact. Despite their concern they handled it fairly well. With angst on his face, my father sought assurance from me that I joined for only 2 years. I explained it was a little longer. “Three?” he asked, to which I replied, “no not for me” which was followed by the hopeful and inevitable “four?” At which point I explained that “no, for me it was six.”
As with baseball, I did well in the Navy and could have easily turned it into a great career. I thoroughly enjoyed the Navy. I enjoyed everything about it. I even enjoyed boot camp. I served with pride.
As it turned out, my six years became eight so that I could put myself through college at night while I ran a department during the day. For four years I worked more than 60 hours a week, took 9 credit hours a semester, including the summers, at American University in D.C., and spent 3 hours a day commuting back and forth, all with the ultimate goal of gaining entrance into law school. The easy path was to remain enrolled at CSU and move on to law school after graduation or to stay in the Navy and enjoy a successful career.
Managing a department while muscling my way through school were difficult sleep deprived years. I often was so tired by Friday night that my bones literally ached. Simple pleasures such as watching a movie or a enjoying a football game with a beer were virtually non-existent. To this day, I do not know how I survived.
My earlier life experiences served me well. I graduated with honors from American and then put myself through law school as I raised two kids, worked nearly full-time, and again graduated with honors. Those years even more sleep deprived than before. And as before, I never once regretted the decision to take the difficult road. I felt good about it. Something about facing adversity sits well with me. Maybe I was made for it.
This past week I have worked with my doctors to put together a treatment plan for the next month or so. Just prior to my hospitalization I began treatment with Avastan. The treatment is relatively simple. A weekly IV infusion every other week that takes about 30 minutes. Avastin blocks tumor blood vessel growth to create hypoxia (oxygen deprivation) in the tumor and shrinking it. It has shown mixed results. In some it has been effective to a degree. In others, the tumor finds new pathways and comes back with a vengeance. My Avastin treatment has been slightly delayed in order to get my blood levels stabilized at a level high enough for me to safely tolerate the drug. To accomplish this, next week I start weekly infusions of another drug called Rituxan. These infusions take longer. In the neighborhood of 4 – 8 hours. In the meantime, I will continue to take Dex, in stark contrast to the gaunt sinewy athlete I was but a short time ago, my body swollen like a balloon, unable to tie my shoes or fit into my suits, I will slowly walk a few blocks each day during lunch to maintain a sense of balance in my life and get in what little exercise I can manage.
While I wish I did not have to go through them, the infusions don’t concern me greatly. The tenuous nature of my life does. This is nothing like one of those difficult roads in life I took on willingly as a challenge. This is not an adversity I relish. I want nothing more at this very moment than to wake up from this horrible nightmare, find myself on the easy path, sit back, relax and enjoy life. It is not to be so.
This “living” with brain cancer . . . I had no idea. And even if I did, it would not make any difference. My hope is that all my past life experiences in never taking the easy road will again serve me well and help me navigate the most difficult journey I have faced.
Life is different now.