So in what now seems like a different lifetime, I had written about an issue we had had with The Third Reviewer and one of our manuscripts at a Fancy Journal. To summarize, we had two initial good reviews who had agreed to accept the paper, when the journal decided to add a third, who trashed the paper and thus, this being a Fancy Journal, got the whole thing rejected. Against all odds, we went on the warpath against this reviewer and appealed the decision, this never having worked in the past.
And... ten weeks later WE WON!! Paper is accepted, Third Reviewer has been vanquished, and a piece of the Mojo Banjo has been recovered! Now it's time to...
"That's fucking Dr. Namnezia to you, you little intern. And I would be feeling better if you hadn't fucking burst into my room without knocking and turned on the light and scared the shit out of me."
"Oh, sorry about that Mr. Namnezia. Are you in any pain this morning?"
"Look you little fuck with your little suit and tie, none of the other interns wear suits, they wear scrubs, and at least express some sort of sign of humanity when dealing with patients. Why are you wearing a suit? You remind me of all those over eager premeds I teach everyday. Maybe you can spend some time developing some real bedside manner rather than the fake concern and "professionalism" you are expressing now."
"Are your bowel movements OK?"
And the worst thing about all of this, is that despite me wanting to say all this, I didn't. I just answered his questions obediently, let him listen to my insides and let him off, with his smug sense of authority. This is one of the hardest things I've had to deal with in being a patient, basically becoming an object, a body to be treated and not a person. Having spent last week in the hospital (I'm home now) really took a lot out of me, both physically and mentally. After a week of not walking or eating much I am ridiculously skinny/weak and my body does not feel like mine. During my stay I was visited by a slew of hospital doctors, and every time I would have to explain my whole situation as they poked and prodded me during every shift change. Plus of course nurses coming in and out to give you medication, silence your beeping I/V pump, take your vitals, draw blood, etc. And in all of this the stress of making sure things stayed clean and that nobody made any mistakes. The whole thing is very dehumanizing. Not just being in the hospital, but being a patient in general.
In the 1960's French philosopher Michel Foucault wrote in "The Birth of the Clinic" about the emergence of the "medical gaze" in the medical profession since the late 18th century. The idea being that a doctor cannot look at a patient as a whole person, but rather as a body, with a bunch of symptoms. Now, I have to admit that the only reason I've read Foucault is due to my undergraduate institution's penchant for adding obscure poststructuralist philosophy to pretty much any class. I also have to admit that I can only can makes sense of about half of a things Foucault says. But after being in the hospital, his point becomes incredibly clear. It is a dehumanizing experience.
So what is there to do? Ever since I got sick I've been approached with offers of complementary medicine – Reiki and such. They say these are for the mind, conventional medicine is for the body. But why? Why do I need someone reorganizing some energy forces or whatever to make me feel more human? Why can't regular medicine be for both? Why can't it be more human? And I really think that the solution is simple – it's called good bedside manner, listening to patients and treating them well and like equals. That's it. But I found this lacking in so many doctors.
That's not to say all doctors are like this. We were fortunate enough to find a doctor who really takes his time to answer all of our questions (between my wife, brother and I being scientists, believe me, we've put him through the ringer) thoroughly and intelligently, has been great at helping us get second and even third opinions, facilitating medical literature and just overall caring. He welcomes emails with questions and checks in at random times to see how I'm doing. Likewise, in the hospital there were a handful of nurses that you could tell went above and beyond to provide good care and look after your best interests. So medicine need not be so dehumanizing, it just takes someone to care and listen to make a huge difference.
One thing I've learned about this is that in order to make my body mine again, I'm going to have to put up with being poked and prodded for a while, but hopefully, little by little I can reclaim myself again. That slowly I will fatten back up and regain my strength and feel like me again. But for now the most important thing is to maintain perseverance, strength and most importantly patience. And to stay out of fucking New Jersey…
Note from Namnezia: The following is a guest post from my smart and lovely Supercool wife, who has been indispensable in navigating this bumpy road. Enjoy!
Having only been in the hospital for the birth of our children, I guess I didn’t know what to expect when we showed up in the hospital 3 weeks ago and were given what can only be described as a knock-out punch to the stomach. In the past three weeks, we have dealt with pneumonia, lymphoma and some serious hemolytic anemia that has us talking about types of red wine every time my husband visits the loo.
Being a scientist myself, maybe I expected nurses to hand us daily charts and graphs, detailing progress. I expected protocols and treatment plans that wouldn’t change hourly. During the day we spend so much time focusing on the science of what is happening – a crash course in cancer biology, hematology and immunology. At night when I lie down to sleep in a cot placed too far from my husband’s side to actually reach him, I listen to the monitors beep throughout the oncology ward and I wonder how did my love become part of this cruel experiment with an n=1?
Aside from his physical appearance my husband remains unchanged. Thankfully, his sense of humor is safe from the cancer that has invaded his body. Immediately following his first round of chemo, to which he responded with rigors so severe it was as if he was undergoing an exorcism, he opened one eye and with the little strength he had left, said to the oncologist, “That is some wild shit.”
His jokes have taken on a bit of morbidity but he throws them around with the same spirit as always. When the bad news started coming in, he didn’t want to hear it all at once and let the oncologists know by telling the following joke.
“So, a man is going on vacation and asks his neighbor to look after his cat for the week, and to call if anything was wrong. On the first day of vacation, the phone rings. The neighbor says, “I’m sorry, man, but your cat is dead.” The man is distraught, cannot enjoy his vacation and promptly returns home. He says to his neighbor, “Listen, you ruined my vacation. If you have bad news for me, you should break it to me gently. You could have called on the first day and said, “Hey, your cat is up on the roof.” On the second day, you call and say, “Hmmm….your cat is close to the edge.” On the third day you call and say “I’m really sorry, but your cat fell and might have broken a leg.” Fourth day, “Man, your cat isn’t doing too well, he might be a coma.” Fifth day, “Sorry, but your cat is on life support.” Sixth day, “Maybe you should come home.” Seventh day, “Sorry, but your cat is dead.” The neighbor apologizes. Next year comes around and the man goes on vacation again, instructing his neighbor to call if anything goes wrong. On the first day of vacation, the phone rings. It’s the neighbor and he says, “Man, your grandmother is up on the roof.” My husband is not on the roof, but these past few weeks have definitely been an uphill climb – with bumps in the road as big as mountains.
Now – to get to the title of this post. I’ve always been pretty ambivalent about the color yellow. Didn’t really love it – but really had nothing against it. Well, now that’s a different story. Yellow can instill panic in me - but can also instill a sense of calm. It is all about placement. Yellow – and all colors for that matter - should stay where they belong. Yellow should not suddenly show up uninvited in the skin, but should be a color that one sees when visiting the commode. Quite rightly, mustard nitrogen - one of the chemotherapy agents - should not be going into my husband’s body. I’ve been thinking a lot about yellow recently, and can definitely say that I am a bit mad about it. Twice right.
I guess one of the advantages of spending some time at home is that you get to explore the inner depths of YouTube to dig up all sorts of things. One popular category I found is famous soccer goals of which there are seemingly endless videos of them, ranging all the way to the 1950's. One of my favorite "classic goals" scored during a World Cup match was scored by Brazilian player Pelé during the World Cup final against Sweden. Pelé was only 17 at the time and scored 2 of Brazil's 5 goals for a 5 -2 victory. His first goal during this match is probably one of the most amazing I've ever seen and always gives me the jimmies when I see it. In the goal, Pelé is standing in the goal area and receives a pass with his chest. In front of him is a huge Swedish defender, twice his size. Pelé stops the ball, looks the Swede in the eye, does a little kick to lob the ball over him, runs around him and as the ball is coming down on the other side he kicks it in with his foot past the viking goalie for an amazing goal. You can see the whole thing for yourself here:
That being said, this trick of lobbing the ball over the defender seems to be a favorite of Pelé. Digging further in the YouTubage I found this amazing clip from a game from 1959 in which teenage Pelé is playing for his local Brazilian league team Santos. Here, after receiving the pass he does not one, not two, but three consecutive lobs over the defenders heads without the ball touching the ground. During the last lob, he fakes out the goalie and uses his head to score. Fucking amazing. This has gotta be one of the greatest goals I have ever seen. Here is a little clip (they'll show the goal in the second half of the clip):
So there you have it. Two amazing goals by an amazing player. However, I can't write a post about goals without showing you another of my all time favorites: Maradona scoring against England in the World Cup in Mexico, in 1986 where he singlehandedly dribbles the ball past what seems to be the entire British team. Check this clip out, the Argentinian announcer sounds like he has just seen God:
I've been debating for a bit now whether or not to write this post. In the end I figured that in order to continue blogging in any way that is meaningful to me, I should. Initially it was going to be longer with little observations along the way, but I think a short version should suffice, for now. So here it is:
I was actually quite thankful that we had made it to New Jersey the day before Thanksgiving in less than three and a half hours. The idea was to spend a couple of days visiting family and head home on Friday. My family and I had been getting over a series of cough/colds over the last few weeks. On Thursday I had hurt a rib coughing and was in quite a bit of pain for the ride home. Friday night my cough got worse and in the morning, to make a long story short, I went to the emergency room. I was given a chest X-ray and confirmed that I had pneumonia. Unfortunately they also found that I was very anemic, blood counts were off and my spleen was the size of a football. So I was admitted, pumped full of antibiotics and let out after almost a week. I also learned that I apparently have a slow-growing form of lymphoma, which I've likely had for a while. Bummer.
The good news is that this disease is supposed to be highly-treatable (I already started) and several new drugs are available, I have access to good doctors at a a major research university, and so far I feel fine, other than a bit winded from recovering from pneumonia. So that's the news. Right now I'm taking things day by day, and things have been hard on me and my family. Needless to say I'm scared. Something like this definitely changes one's perspective and priorities.
Since I started my blog, I've found it very therapeutic to write about things on my mind, and as opposed to, say, keeping a journal, its nice to get feedback and be forced to crystallize what I am writing since I know others will be reading it. So I hope to continue blogging throughout all of this, mostly about the usual stuff, maybe occasionally about being sick, but I promise I will not make this blog depressing. As long as the blog is helpful to me, I'll continue to write here. Expect the same kinds of posts, with the same kind of humor (maybe a bit darker) and the usual shenanigans.
One thing for sure is, I'm staying the hell away from fucking New Jersey.