One thing that I noticed even as a young child was that my dad always treated people fairly, even when someone might not technically have deserved his kindness. In one of his first jobs as a manager, he found out that one of his employees was using the company’s money to make unauthorized purchases. I remember that Dad was upset that he had to fire the guy; he said that, even though the guy had made a mistake, he wished he could give the guy another chance, because we never know what kind of problems someone else has had or has currently. One of the things this guy bought with company funds was an expensive hunting knife, and, after Dad had fired the guy, Dad’s superior told him to keep the knife since it couldn’t be returned. Dad said that he had really liked the guy and decided to call the knife by the guy’s first and last name, Jason Veck. I remember many times when we needed to open a package or do something else with a knife and Dad would get Jason Veck out of the glove compartment of his car. Every time he did that, I thought about how it was a shame that the guy never even knew how much he had lost as a result of his poor choices, not just a job but an opportunity to learn from someone who has so much to offer and is so accepting and nonjudgmental. I am so grateful that I got to spend so much time with my dad and that I did take away so many valuable lessons that I have often used and will carry forward. One of the many that I will certainly remember is the "Jason Veck" lesson: Because we never really know someone else's circumstances, we should always try to give that person a second chance.
This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Wednesday, June 15, 2011
Tuesday, June 14, 2011
The Question to Never, Ever Ask
Everyone knows this is the Question to Never, Ever Ask: "Could things get any worse?" I want to go on record to say that I most certainly am not dumb or brazen enough to say that and I definitely did NOT utter those words anytime recently. However, I am starting to wonder what the HELL is going on!
I drove to a neighboring suburb Saturday morning and parked my car in a parking lot on a busy street near the trailhead. I locked my purse in the trunk and took off on my run around the lake. It was already hot, and so I only ran for about 40 minutes. When I rounded the last corner on the trail and saw the car, I thought about how great it was going to be to have already gotten the run in and how I was looking forward to having some down-time that day. I decided I would stop to get a drink on the way home, and so I took the car keys out of my shorts pocket and popped the trunk to get my purse.
Except it wasn't there. The trunk was empty.
For a few seconds I was confused, and then it hit me. Some asshole had stolen my purse! At first glance, the car looked untouched though - no broken glass. I actually wondered if I'd had a lapse in thinking and didn't lock the car doors earlier, but when I thought back to before the run I distinctly remembered doing that. I called the police and then called my husband. While talking to him, I paced around, which is how I noticed the passenger-side door lock had been pushed in so that there weren't "key teeth" in the edges of the lock anymore. Ah-ha. And damn.
Of course I felt violated, but mostly what I felt was stupid and MAD. It was a safe part of town! And it was broad daylight! And I HAD locked the damn car! I told all of this to the officer who chucked a little and said, "Oh, it happens all the time around here. They watch as people get out of their cars, and the ones who look like they are going to run, walk, or bike on the trails always leave their purses or wallets behind, so they know who to target." WAIT A FREAKING MINUTE! For some reason it seemed like he was bragging when he said this! If my job is to "serve and protect," though, I certainly wouldn't be spilling the beans so easily about a crime that happens "all the time"! How about stepping up the patrol and/or installing video surveillance and/or at least posting signs warning people about the frequent break-ins???
So Officer #1 calls for the Fingerprint Officer, who does a little precursory fingerprinting in slow motion while discussing his Saturday night plans with Officer #1. In the meantime, my husband calls to tell me that he logged in to our online banking account and sees that my debit card is being used repeatedly at a gas station just around the corner. I relay the info to both officers, they discuss it for a good 5 minutes, and finally I ask if they are going to check it out or if I should (heh!). Fingerprint heads over to the gas station while #1 sticks with me so he can ask me for every number I have ever had to memorize - social, date of birth, checking, phone numbers, any other credit card numbers, etc. etc. I kept waiting for him to ask for my IQ, my annual income, and my bra size, too. It felt like another violation and made me feel even dumber and madder.
I tell him I am getting a migraine and very unfortunately all of my migraine medicine was IN MY EFFING PURSE. My insurance only covers a few of those pills per month (a whole 'nother topic!) so I am going to have to pay full price for more or take something else that may or may not work and will probably knock me out. Not that the latter sounds too bad at this moment in time. #1 tells me all about how his wife gets migraines too. Thanks for sharing, now GET TO FREAKING WORK!
Fingerprint comes back about 15 minutes later and says he got a DVD with footage of Asshole Thief using my card to fill up his gas tank (they got the model/make/color of the vehicle but no license plate) and then casually trying on sunglasses, picking himself out some treats inside the gas station store, and making those purchases also. Dude had on a white linen shirt and pants. (I'm so glad he dressed up for his day of crime!) The two cops shared some laughs over how dumb the guy is, wrote down my "case number" on one of the tiniest scraps of paper I've ever seen, and advised me to call the station with that number on Monday morning to get an update.
I got in the car and drove away so I could try to make it home before my head split in two, and then it hit me: in the little zipper pocket of my purse were a couple of sentimental things of my dad's, and they are now GONE. Damn. It's everything I can do to keep myself from asking the Question to Never, Ever Ask.
Monday, June 13, 2011
The Beginning - One Day While On a Run
On Saturday, October 23, 2010, my husband picked me up at the airport as I returned from a business trip, and as soon as I was seated in the passenger seat he said, "Your dad was running this afternoon and had to be taken to the hospital by ambulance."
I need to give a little background to this: my dad, an avid runner/biker/swimmer since before I was born, had had lots of accidents over the years related to his workout regiment. I guess my family had become somewhat desensitized to it after so many close-calls and even a few "hits;" my dad was hit by a car while running at least twice that I know of and while biking at least three times, not to mention the many of emergencies like falls, sports injuries, and other things like heat exhaustion he'd had. Like a cat with nine lives, somehow Dad always ended up ok after something happened to him, although a few times he'd ended up with broken bones and needing stitches or at least debris picked out of his skin as a result.
So the first thought that went through my head after the news was delivered was the question of whether he'd injured himself or if someone else was involved. My husband told me the rest of the news that he had at the time, basically that Dad had some trouble on a run, had not been able to get in touch with Mom because she was out of town, had given out my aunt's phone number so she could be called, and then an ambulance had taken him to the hospital where he had had a seizure and a "large mass" had been detected in his brain.
Instinctively, I wanted to hurry to the hospital where he was, about a 3-hour drive from my house. I frantically called my aunt, my Mom, and my siblings to see what everyone else knew and what they were all planning to do. Somehow we decided that one of my sisters was going to drive Mom from where she was to the hospital, where they would meet my mom's two sisters, both of whom were at the hospital with Dad already. My sister that lived in L.A. was going to get a flight the next morning so I would pick her up at the airport and we would go together to the hospital. At the time, I was convinced that the findings were wrong or at least that if there was a mass in his brain it would turn out to be easily treatable; in my mind, it was a short-term emergency that we would just add to the list of things that he pulled through, and he would be back running in a few days.
I don't remember much of that night or the drive the next day. I do remember that, as I was taking things out of one suitcase from the previous trip and throwing them into another that first night, I tossed in a spiral notebook because I'd read one time that when someone is in the hospital, everything should be recorded to watch for mistakes and to keep a log of things. I remember thinking how completely surreal everything seemed as I picked up my sister at the airport and we drove to the hospital. The shock was all-consuming; it was easy enough to move forward because we didn't really think this stuff was happening. Dad was awake and alert and evidently had been planning to play a joke on us, and so when we walked into his room in the Neuro-ICU, he acted like he didn't recognize us. Our other sister and our mom recognized that we were about to panic, and they "busted" Dad. It made us feel good, though, to see that he was up to his usual pranks, even though he seemed a little confused as to what had happened that resulted in his ending up in the hospital and very noticeably did not have any sensation in his left arm or leg.
We were told that the neurosurgeon would be doing a biopsy in a few days and thus began the waiting and the slow-motion panicking as we tried to find out everything we could about what was happening and what was going to happen. We were told by the surgeon that cancer was suspected and even told what type of cancer he thought it was, glioblastoma multiforma. Denial had its arms wrapped tightly around us, which was comforting and helpful in many ways at the time. "THIS IS NOT HAPPENING, OR IF IT IS, THEY ARE WRONG IT ISN'T CANCER" became our mantra.
We didn't want anyone to be negative in front of Dad; he asked over and over what was wrong with him and what was going to be done about it, at one point even saying "I get that it's a mass in my head, but I know it isn't cancer! I'm way too lucky to end up with brain cancer." We agreed with him wholeheartedly!
To read about what happened next in our story, click here.
I need to give a little background to this: my dad, an avid runner/biker/swimmer since before I was born, had had lots of accidents over the years related to his workout regiment. I guess my family had become somewhat desensitized to it after so many close-calls and even a few "hits;" my dad was hit by a car while running at least twice that I know of and while biking at least three times, not to mention the many of emergencies like falls, sports injuries, and other things like heat exhaustion he'd had. Like a cat with nine lives, somehow Dad always ended up ok after something happened to him, although a few times he'd ended up with broken bones and needing stitches or at least debris picked out of his skin as a result.
So the first thought that went through my head after the news was delivered was the question of whether he'd injured himself or if someone else was involved. My husband told me the rest of the news that he had at the time, basically that Dad had some trouble on a run, had not been able to get in touch with Mom because she was out of town, had given out my aunt's phone number so she could be called, and then an ambulance had taken him to the hospital where he had had a seizure and a "large mass" had been detected in his brain.
Instinctively, I wanted to hurry to the hospital where he was, about a 3-hour drive from my house. I frantically called my aunt, my Mom, and my siblings to see what everyone else knew and what they were all planning to do. Somehow we decided that one of my sisters was going to drive Mom from where she was to the hospital, where they would meet my mom's two sisters, both of whom were at the hospital with Dad already. My sister that lived in L.A. was going to get a flight the next morning so I would pick her up at the airport and we would go together to the hospital. At the time, I was convinced that the findings were wrong or at least that if there was a mass in his brain it would turn out to be easily treatable; in my mind, it was a short-term emergency that we would just add to the list of things that he pulled through, and he would be back running in a few days.
I don't remember much of that night or the drive the next day. I do remember that, as I was taking things out of one suitcase from the previous trip and throwing them into another that first night, I tossed in a spiral notebook because I'd read one time that when someone is in the hospital, everything should be recorded to watch for mistakes and to keep a log of things. I remember thinking how completely surreal everything seemed as I picked up my sister at the airport and we drove to the hospital. The shock was all-consuming; it was easy enough to move forward because we didn't really think this stuff was happening. Dad was awake and alert and evidently had been planning to play a joke on us, and so when we walked into his room in the Neuro-ICU, he acted like he didn't recognize us. Our other sister and our mom recognized that we were about to panic, and they "busted" Dad. It made us feel good, though, to see that he was up to his usual pranks, even though he seemed a little confused as to what had happened that resulted in his ending up in the hospital and very noticeably did not have any sensation in his left arm or leg.
We were told that the neurosurgeon would be doing a biopsy in a few days and thus began the waiting and the slow-motion panicking as we tried to find out everything we could about what was happening and what was going to happen. We were told by the surgeon that cancer was suspected and even told what type of cancer he thought it was, glioblastoma multiforma. Denial had its arms wrapped tightly around us, which was comforting and helpful in many ways at the time. "THIS IS NOT HAPPENING, OR IF IT IS, THEY ARE WRONG IT ISN'T CANCER" became our mantra.
We didn't want anyone to be negative in front of Dad; he asked over and over what was wrong with him and what was going to be done about it, at one point even saying "I get that it's a mass in my head, but I know it isn't cancer! I'm way too lucky to end up with brain cancer." We agreed with him wholeheartedly!
To read about what happened next in our story, click here.
Sunday, June 12, 2011
Anticipatory Grief
Another thing I have learned about in reading about grief is anticipatory grief, which is a reaction that occurs before an impending loss. The term was coined by the American psychiatrist Erich Lindemann during World War II as he described a situation in which a soldier had returned home after being away a long time to find that his wife was no longer in love with him and wanted a divorce. According to Lindemann, the wife had mourned her husband's absence and had detached herself from him, in anticipation of the possibility that he would not return. In the way that the term is used today, though, most of the time the family and friends of the person who is terminally ill do not realize they are already grieving, and it is certainly not intentional. At the same time they are grieving in anticipation of the loss (death) of that person and how that will change their lives forever, they may be, in fact, grieving both the loss of the person as they knew them (healthy and independent), their relationship with that person (instead of patient-caregiver), and their lifestyle from before the person got sick. Even though we didn’t know about anticipatory grief at the time (and even if we had known about it, we would have been way too busy to stop and think about how it was affecting us), I think this “dual-grieving” is what my family and I were doing during the ten weeks my dad was battling cancer.
Some of the literature says that when anticipatory grief is experienced by a loved one of someone who is terminally ill (or by the terminally ill person himself), the five stages of grief described by Kubler-Ross - denial, bargaining, depression, anger, and acceptance - can often be observed. Anxiety, dread, guilt, helplessness, hopelessness, and feeling overwhelmed are also common. While it may prompt attempts at closure at the loss approaches, it does not soften the blow of or shorten/lessen the grief experienced after the death. Some studies have shown that, while post-death grief lessens over time, anticipatory grief almost always increases over time as the death nears, as sadness, stress, and fear increase as well and the weight of caregiving is paired with the realization that the end is near.
When I first read about anticipatory grief after my dad died, the word “anticipatory” hit me the wrong way. It seemed to imply that we knew he would not survive when actually, for nine of the ten weeks, we didn’t. Dad’s case, and the way we had to care for him because of the way he was affected, were very different from cases when the doctor tells the person that he or she is terminally ill and then that person has a limited amount of time to make decision, do what he wants to do, and have lots of heart-to-heart discussions with loved ones. Because the cancer was in his brain and because of the effects of the tumor, the seizures when he was first diagnosed, the medications he took, and the surgical scarring in his brain, we were not afforded a chance to do these things, which, in many ways, seemed to make things harder to deal with and to cause the grief fan out like a river tributary, both while Dad was sick and since his death.
One of the things that held both good and bad while Dad was sick was the fact that he slept very little (sometimes none in a 24-hour period), which we think was mostly due to the massive amounts of steroids he was prescribed in attempt to manage swelling around the tumor site. The medication, the area of the brain where the tumor was located, and the anxiety he was feeling resulted in a constant stream of talking from Dad around the clock. It was exhausting. But, at the same time, whoever was with him at night (we took shifts) got the privilege of having long, in-depth discussions with him, some of which were very thought-provoking and touching. I remember so many of those late-night talks with him, in the hospital, in the rehab center, and at my parents’ house. He needed that contact at the time, and so did I. Even though many of those nights I was so tired I could hardly keep my eyes open, our conversations from that time are something I will always treasure.
From the time that Dad was diagnosed on Oct. 23, he had to adapt quickly to changes that would have brought an average man to his knees, possibly quite literally. Somehow, though, he took things in stride, which helped us to do the same to a certain extent. The only time that I remember Dad asking why or how he got cancer, it was in a completely non-“why me” manner. It was investigative, not self-pitying; he asked because he really wanted to know if there was a chance that anything he had ever done caused him to get sick. Looking back at how my family dealt with the losses and hardships that happened during his illness, I can see now that some heavy-duty “bargaining” was going on; everything about everything we did during that time was a demonstration of how badly we wanted him to be with us, in any shape. We were sad and angry and we missed the “pre-diagnosis him,” but we were happy and proud and so appreciative to have him as he was after Oct. 23, too, because we realized it was better than the alternative. It was so very impressive to see a man who was fully prepared to compete in an Ironman triathlon (that’s a 2.4 mile-long swim, a 112 mile-long bike ride, and a 26.2 mile-long run, back-to-back) be driven to using a walker or a wheelchair literally overnight and never complain. He got frustrated, he didn’t like it, but he didn’t complain. After his diagnosis, he wasn’t allowed to drive a car, to swim, or even to be left without an adult in the house, because of the potential for seizures. He lost his right to privacy, his ability to participate in almost all of the things he enjoyed, and his independence, but he forged ahead. That’s courage, tenacity, and toughness on a level most of us cannot even imagine, and it’s so humbling. For all of the sacrifices that my siblings, my mom, and I made to take care of Dad, he made so many more in order to stay around to be with us for as long as he possibly could. Maybe seeing that is “acceptance,” I’m not sure, but one thing I do know for sure is that it’s something I will always appreciate and admire about Dad.
I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It's when you know you're licked before you begin but you begin anyway and you see it through no matter what. -- HARPER LEE, To Kill a Mockingbird
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