Heart of Darkness
Yes, I love my life. Yes, I feel like the luckiest girl on planet earth.
Also, this shit is exhausting. I get really tired doing things that don’t seem to make other people tired. I am physically exhausted two hours into a volunteer or work shift despite getting plenty of sleep, exercise, water, food. While everyone else is warming up, hitting their stride, I am wrapping up, gathering my things to head home and nap.
I am like one of those baby dolls that close their eyes when you put them on their backs. I can sleep nearly anytime I go horizontal.
On a typical day, I am slower and sleepier than everyone I know. I might have a few hours of frenetic energy every week, enough to get a lot of things done at once, but otherwise I have about as much forward momentum as a jellyfish.
I occasionally have days interrupted by three hour naps. These naps feel inevitable. Sometimes I am so tired that I don’t have many memories from before I fell asleep. I will wake up fully dressed knowing that I walked the dog, taught, and had lunch, but don’t remember climbing into bed to shut my eyes. I can go back to sleep for the night a few hours later effortlessly.
A doctor prescribed Adderall. It helps me a bit when I am awake, I do notice a difference most of the time. On a “wipeout” day, however, I can take a 10mg pill in the afternoon to try to stave off the impending nap, yet climb into bed an hour later, and fall right asleep. These wipeouts are both acute and profound.
I have several tumor buddies who feel the same way. I can think of three other people who are living very close to the edge, toeing the line of poverty because they simply cannot work a 40 hour a week job. Any 40 hour a week job. Like sitting in a comfortable room waiting to answer a phone that occasionally rings might feel like a sisyphean task. Our speech might slur out of fatigue, we might get a migraine.
And yet, we have all experienced doctors who don’t seem to believe us.
My friend had a tumor resection, radiation, and chemo in the course of a few months. He described his fatigue and daily naps to the doctor, and the doctor told him to lose weight.
This is the same doctor who prescribed the gym when I asked him about those bizarre, severe naps I just described to you above.
I realize some readers will be thinking *depression* Morgan, you and your friends are depressed and exercise and so on is good for depression.
Yes! depression accompanies tumors plenty, and fatigue and depression go hand in hand
BUT listen to me folks, this ain’t that.
I KNOW that feeling, I have that too. I have a whole toolbox to deal with that.
Neither this daily fatigue, nor these borderline blackouts are related to depression
Over the past nine years, I have come to realize that fatigue is normal for me and people like me. I also know that it isn't our fault - it is nothing that we are doing or anything that we have failed to do. We are not to blame, everything that has happened to us is to blame.
Why a doctor, a neuro oncologist, would deny a person’s fatigue is unfathomable to me. He knows better than most what I have been through.
Imagine, for a moment, having a brain tumor.
Now imagine having someone take a jigsaw to your skull and scooping around in your brain with a melon baller using a grainy black and white image as their guide. You now have a HOLE in your brain where the bulk of the tumor once was.
Look, I know not all tumors are the same and not all brain injuries are the same, but I'd guess that having a brain tumor (and surgery) is a type of (or at least akin to) a traumatic brain injury.
Now imagine getting a lethal dose of radiation blasted directly into your brain, meted out over thirty visits so that it doesn't kill you immediately. There is the initial cell death it causes, but it lingers, slowly causing more damage and cell death over the course of years.
Imagine the haunting knowledge that it also causes brain tumors, and there is the very real possibility - no, likelihood - that it will create another tumor in your brain in time.
Imagine taking a HUGE pill twice a day every day to keep your brain mellow. Epilepsy drugs are depressants - they prevent seizures by keeping your brain from going haywire (which your brain with all this damage is likely to do).
D E P R E S S A N T S A R E D E S I G N E D T O M A K E Y O U T I R E D
I feel like it is like walking around with a heavy bag all the time to keep you from, I don't know, dancing. You become accustomed to it, but other people are not walking around with this extra chemical weight. Despite taking this depressant loyally - you take it everywhere you go, you worry if you start running low, you are physically and emotionally dependent on it - you still have seizures on occasion.
Imagine having a seizure disorder.
Imagine having so much chemotherapy that your blood is still janky five years later.
Imagine being hurled into menopause about 20 years early. Hormones in flux wreak havoc on your body. Peeing-your-pants-at-the-copy-machine level havoc and fatigue.
Imagine having wonderful friends and family members watching out for you. It is a salve, a wonderful thing, a blessing. But it can also, at times, feel incredibly taxing.
Sometimes I have to work to prove that I can be independent. I need to make my case for being “fine” - really, I can travel alone please stop worrying.
Other times I have to console. I might not feel good but I need to convince well-intended loved ones not to worry, it’s just a headache, no I don’t want to try to get an MRI sooner.
Imagine paralysis for a moment. You can do everything you need to do to take care of yourself but this arm nuisance is an unwelcome addition to an already tough situation.
The kicker is that you are corresponding with insurance, doctors, and the pharmacy more often than most people.
Oh the paperwork!
The fatigue is real. You have less to work with and more to do. It is truly the most horrible paradox of this whole thing.
And yet the doctor tries to gaslight you, acting like you are crazy for feeling tired.
Michael needs to lose weight? Maybe, but Michael also needs you to believe that how he feels today, after all the bullshit he has been through, is worse than how he felt last year (at the same weight).
Regarding my fatigue, one doctor told me "my other patient whose case is much worse than yours just went back to the office full time."
How am I supposed to respond to a statement like this? At the moment I felt shame, like a child who did something wrong and who should have known better. I felt guilty. Only later did I feel the appropriate anger: I am not your other patient.
Maybe this “other patient” has a job at his family’s company and they allow him lots of down time.
Maybe this “other patient” has a job that can be easily stopped and started. An hour here, three hours there.
Maybe this “other patient” had a full time office job that used to only take him 15 hours a week to do - the other 25 filled with Facebook and chatting around the water cooler and that same full time job now takes him 50 hours to complete.
Maybe this “other patient” started going back to the office full time, got a migraine on the second day, and you haven’t spoken to him yet to be updated on his new employment status.
Everybody is different, every tumor is different.
Maybe this “other patient” really is thriving at work.
I knew someone like this - he got a graduate degree, started a family, got a bigwig job in DC - despite having a very similar diagnosis and general tumor location as me. He did things that exhaust me to even think about, he lived the high life, had boundless energy and crammed a lifetime’s worth of love and travel and success into a few short years.
He also had a different course of treatment than I did - no radiation, different chemo - and he struggled more with seizures than I do.
I would never have taunted him that I had fewer seizures, suggesting “why couldn’t he be more like me?”
He never balked at my wanting to meet for coffee early in the day instead of a beer later in the evening, never questioned my quiet life, my dislike of EDM, or my part time work. He would never have suggested that I take on a high pressure job, or hinted something like “if he could, I could.”
We would never have done this because it simply doesn’t make sense.
Why would HOW COULD a doctor ever make similar implications?