May 11, 2008

Happy Mother's Day

In my cancer-related correspondence, my mother comes up quite often. Usually people convey regards to her; other times they ask me about how she is doing, or how we are getting along. She is often in the background of my updates, because she’s around me all the time and takes care of me when any other person (except probably my father) would let me kvetch myself to death or starve. I don’t talk about her explicitly very much because her presence is so ubiquitous that it rarely occurs to me to discuss it. Recently it occurred to me that not all of the readers know about the role my mother plays in keeping me alive, and that she might not know how much I appreciate her. To remedy this, I present the following shameless plug for my mom.

I tried to come up with a short list of the best reasons I have for loving her:

1) She hasn’t killed me or returned me to the vegetable stand yet: if you got to know me through cyberspace, chances are you have no idea how annoying I can be when unscripted. If you got to know me in the flesh, you think you know, but you have no idea how much worse it was when I was whippersnapper. My mom was smart enough to know I’d be trouble on Day One. The first thing said upon seeing me was “he’s a redhead! Put him back!” Fortunately for me and her uterus, I was a blond - with blood on my head. I should add that when I was three years old, I absent-mindedly asked my mom where “children [like me] come from.” She told me that she bought me for 25¢ from a woman selling cabbages. She brought home the cabbages, and there I was in the bag. In all fairness to my mother, Cabbage Patch dolls were the rage at the time. 

My continued biological existence is strong evidence that my mother is incredibly cheap, or really likes cabbage because before I hit puberty I: tricked my brother into drinking pee, bit another pre-school student to “teach him what a carnivore is, [we were studying dinosaurs and apparently he was some kind of idiot]” told a teacher that my new baby brother would be named “Chair,” precipitating the most bizarre parent-teacher conference of all time (I convinced her by telling her that “it could’ve been worse, at first they were going to call him ‘Tug Boat’”), made her read me a book called Spring is Here, Spring is Here (the plot is somewhat predictable) for 18 hours while flying to Israel, cried so loudly about letting a frog my dad caught in our backyard that the neighbors suspected child abuse (it went something like “[scream] but I love him [scream] (anyone know how to tell the sex of a frog?)!” and gave her three descriptions of my dream job: “butterfly,” [age 2] “garbage man [this at age 3, as we drove past Harvard and MIT - forever ensuring that both institutions would reject me whenever given the chance],” and “telling the President what to do” (age 6). Needless to say, pubescent hormone surplus did not make me easier to deal with.

All of that said, the jury is still out on the whole infanticide thing. Speaking of which, does anyone want to volunteer to come to my last treatment to make sure she doesn’t make good on her threat to “kill [me] once [I’m] cured?”

2) She has pushed me to find all of my great loves: without exception, my mother has encouraged me to do everything I love. My fascination with guns, bombs and jets, my boundless enthusiasm for all things dinosaur and Japanese, Peter Sellers and Mel Brooks, drawing and my lifelong bond with animals. She also taught me to love women and other humans (but that’s covered below).

Two items of particular significance stand out. First, books: my mother and father both read to me when I was little, even though they both worked. Even when I was way too old for that they kept doing it because I had trouble learning to read. Most people I know who read the way I do started doing it around pre-school or kindergarten. I didn’t really start getting along with whole paragraphs until I was nearing 3rd grade. Appeals to my desire to please, my intellect, a learning disability therapist and God only knows how many versions of Why Johnny Can’t Read had no appreciable effect. Distressing as this was, my mother ultimately solved it by appealing to my all-consuming infantile avarice (best embodied in my long-running response to any offer of cake: “the biggest and the most, please.”). My parents told me that I would only get new toys on holidays and birthdays but they would buy me books wherever and whenever I wanted. The predictable result is summarized by my parents’ oft-repeated statement that they “should’ve bought stock in Barnes and Noble.”

A normal, competent parent teaches their kid to read, but my parents made me so curious about the world that it got me to teach myself how to read when I was ready. In other words, they didn’t give me fish, or teach me how to fish, they taught me how to teach myself to fish and gave me an infinite supply of tackle. My reading skills basically went from zero to Jurassic Park in a year. My appetite for books is so great that even now, when I can’t really stare at pages for too long without getting nauseating vertigo I consume so much trashy literature that my mom has to force me to give away books or my shelving will collapse on itself. Anyone need a novel? I don’t do delivery…

Second, debate: no one knows my mom brought Muhammad to the mountain on this one. When I was in 8th grade, I gave a speech at my junior high graduation. It had something to do with how my high school class would be the class of 2000, and the significance of leadership in the new millennium. My mom helped me write it. I suspect that people were very impressed that I could 4 to 1996 and get 2000. Some nice old lady came up to me afterwards and said I would be “the President someday.” I was so insulted that I went to tell my parents, but before I got there, one of my classmates stopped me and told me that his older brother was in the audience and “wanted me to join the debate team.” I said okay, and he said “no seriously, he says he’ll rip your nipples off if you don’t join.”

At the time, I had no idea how serious a threat the team captain posed to my nipples. Not only did my mother insist that I comply with the threat (thus saving said nipples), she upbraided me for showing insufficient enthusiasm about the “inside track” I was being offered. About 3 years later she realized that being a national champion involved constant travel, the complete absence of a normal social life, brought me into contact with weird, lives-in-mom’s-basement evil-genius types, and made me even more argumentative and stubborn than usual. She tactfully suggested I “move on to something else.” FYI: “tactfully suggested” in Jewish Mother sounds like “insistently, repeatedly, loudly and forcefully demanded” in Gentile Mother. Fortunately for the debate community, I’m roughly half as obstinate, willful, and stubborn as she is.

A fact that no doubt infuriates my mother to this day whenever the word “debate” is used in conversation is that she and my father made me good at it long before I ever joined a team. Aside from the small matter of literacy/illiteracy, they did two things that prepared me for a long and distinguished career as a Debate Jedi Master. 1) They never treated me like a kid. A kid’s opinion on adult issues is insignificant. By contrast, my parents always talked to me like a small, somewhat-undereducated and ill-tempered adult. When I had contrary opinions, they heard me out and paid me the respect of explaining why they disagreed (then usually they did me the service of overriding my preferences with parental fiat). One of my biggest problems in school (life) was that some teachers (bosses, cops, professors, TSA agents, landlords, significant others’ parents…) had trouble enjoying the company of a child raised in a home where disagreeing with adults was de rigeur. 2) They never set a curfew for me (until I lost my virginity; then it was 1030). Since both my parents worked, if they put me to bed at 8 or 9 like a normal kid, it would give us only an hour or two together. Instead, they came home, made dinner, and then we would eat and talk at the table (no TV in the dining room). At dinner, we would talk about the world, our family, my parents’ jobs and the economy, and as long as the conversation was in English, I was included in it as an equal.

3) She made me a culinary citizen of the world, or rather, of a globalized America. About 10 years ago “polenta” became a common feature on the menus of hoity-toity eating establishments. I started eating that stuff when I was a toddler, except in our house it was always called mămăligă (same food, slightly different consistency, Romanian name). She made it when she was too tired to cook something else. Foods from Southern and Eastern Europe and the Middle East dominated our table and refrigerator. I always assumed that other families ate this way, until I learned that it is not uncommon for parents to baby their children by serving only those foods that the children immediately like. Since children tend to like unhealthy food and that which is advertised heavily, it is unsurprising that our society suffers from twin epidemics of obesity and ignorance. My mother often cooked foods I did not like – when I complained, she told me I didn’t know what I was talking about, and ate them with my father while I watched. I since have learned to enjoy what I repeatedly and loudly rejected (notable exceptions include: brain, mămăligă eaten as breakfast cereal, gefilte fish, and head cheese). To her credit, she rarely says “I told you so.” More generally, my mom taught me to take joy in the simple pleasure of good food.

Furthermore, she taught me to cook (“so you won’t marry the first dormitory slut who makes you decent macaroni and cheese”) and to eat like a civilized person. When I held a utensil like a savage, reversed my fork (left) or knife (right) hands, or committed another gross faux pas, my mother would (depending on the severity of the offense) correct, yell, or reach across the able and whack at my hands until I rectified the situation. She took this to the ludicrous extreme of punishing me for eating French (freedom) fries with my fingers – my brother and my strenuous and sustained objections to this ultimately created an exception, and convinced my mother to eat fries like a good American as well. Although she snickers at my consistent use of chopsticks, I see it as a extension of the good manners she taught me – they, like nearly everything else, are situation-specific. Ultimately, she taught me the value of an internationalized palate and a willingness to try new things. As a result, I have spent countless joyful hours sampling the delicacies of our big, complicated blue world.

4) She made me an intellectual world citizen. My mother made a sustained effort over the course of my entire life to explain the wider world to me, while admitting when she did not have all the answers. She told me about living in foreign cultures, about the Cold War, living under Communism, living with Arab-Israeli conflict, and about how different America was from other places. I grew up hearing two foreign languages spoken every day. I grew accustomed communicating across cultural barriers, and learned to view problems from perspectives alien to my own. I learned to translate and move between my Levantine-European house and my suburban American schools. Americans who are ignorant of the wider world do not fully appreciate their country (that they die for it nonetheless says something impressive about America and Americans). She cultivated in me an abiding curiosity about global politics and history because she always pushed me to ask “why,” as in: “why do Arabs and Israelis kill each other?” Or, “why is there a a nuclear arms race?” She taught me about my ethno-cultural “roots,” and she never went on vacation without me. She turned my natural curiosity to the task of understand why and how peoples are different, why they miscommunicate, why they hate, fight, kill and destroy each other. Today, I study international relations at Georgetown and work in the defense sector – she had more than a little to do with this (but if she tells me I was “born to litigate” one more time, I may commit matricide).

5) She taught me the value of (hard) labor. One of my earliest recollections of my mother’s way of explaining our economic position is her saying “I have news for you, kid, in this world you won’t get anything you don’t earn for yourself.” She never, ever let me do a half-assed job on anything without a dose of serious criticism or a forced repetition of the task. Over time, she tattooed “if it’s worth doing, it’s worth doing right” along the inside of my skull right near where the part of my brain that thinks is located (just left of the part that sucks at math). As a debater, a student, and at my job (where I occasionally get flak for this), my mantra has been that anything worth thinking about is worth approaching with unstinting diligence and unyielding curiosity. Whenever I protested that others were also neglecting their responsibilities, she gave me some line about others “jumping off the Brooklyn Bridge,” and then excoriated me for using their laziness as an alibi. I didn’t know it then, but she was teaching me to lead by example.

When I taught “the best of the best” high school debate students at Northwestern University, I was utterly appalled by the quality of the work they turned in. At first, I gave more help and advice. I even produced literature reviews and citation lists for them (thinking their research skills were lacking or the tasks were too complex), but got no results. Finally, I gave a long, blistering, vicious and immensely cathartic rant about how pathetically inadequate their effort was. Over the next two weeks, I administered several more individual dressing-downs and two other lectures similar in tone and content. The quality and quantity of work increased. When the program ended, around ten students (out of nearly 20) approached me to say thanks. Each one said “thank you for yelling at me, no one has ever done that to me before” (or something similar). At first, I saw this as teenage hyperbole, but around student #6, I asked “what do you mean ‘no one has ever done that to you?’” He/she told me that no one, not a teammate, not a friend, not a coach, not their parents, not a teacher - not one single solitary human being worth remembering had ever told a 17 year old private school student that his/her work was inadequate, or that he/she was being lazy, or acting stupid, or inept. A vile culture of universal positive reinforcement excised them from reality – where ineptitude, laziness and stupidity are cause for criticism and worse. Thankfully, my mother keeps me firmly tethered to terra firma even when others heap praise upon me.

6) She taught me to respect women. My mother is capital-t Tough. She (in)famously reduced an extremely pregnant (and spectacularly unhelpful) airline employee to tears in a crowded Canadian airport concourse. She was being mean, but not unfair: she worked until the day her water broke. She had her adenoids ripped out with pliers, sans anesthesia. She birthed two children – during the second birth, her leg was in a giant plaster cast because her ankle was shattered and full of screws. She lived in a dictatorship and in a war zone. She once calmly talked a man out of killing her. When she came to see me in the hospital, she was convinced that her first born child was going to die there. I thought I would probably die too, but I was pretty sure I would at least get to go home first. I was utterly stunned to learn how pessimistic she felt, because I saw my mother cry a grand total of two times during the week we were together there (the first time, I was crying too – we had just found out I had cancer).

As near as I can tell, my mother has worked two full-time jobs nearly every day that I have known her. She occupies an office where she designs the plans a multinational corporation uses to cope with the unexpected. If rioters run amok, a transformer explodes and an entire country goes dark, or an air conditioner breaks in a tropical country where a heat-sensitive server farm is located (these have happened in the 5 months since she moved here, several of them in a single day), panicked and confused people call my mom to fix it. Don’t even ask what she was up to when Katrina hit. In her second job, she cooks, cleans, and administers for a family of four. She has always done both of these jobs with skill and grace, and only rarely complains that the distribution of labor unfairly saddles her with a lot of tasks that would reduce the rest of us to quivering piles of male jelly. A doctor friend informed me that women have greater stamina and pain tolerance than men, in a tone that strongly implied that this should come as a surprise. It did not.

Not only does my mother do her gender great credit with her strength of character and work ethic, she stands up for her fellow women. She has consistently called me out when I mistreat, underestimate, or malign the women in my life. On dozens of occasions, my mother has informed me that I am being a “male chauvinist pig” (it changed from “piglet” around 14) and pinched, hit or slapped me, if warranted. She routinely goes so far as to say that she “hopes someday someone does the same to [me] so [I] will know how it feels.” When I was 18 and had my heart broken, she brusquely informed me that I “had it coming.” That was the first, but not the last time my mother has said that. Informed of my most recent heartbreak, the first words out of her mouth were “well, she was too good for you.” My repeated protestations that when I date, she is supposed to take my side – even (especially) when I am wrong have been greeted with what I can only describe as amused disdain. I would be mad at her about this, except that in nearly all of the cases that I can recall, she has been absolutely, overwhelmingly correct.

Because of her, I am friends with most of my ex-girlfriends, and have more female than male friends (the latter also has something to do with the fact that I do not really understand “sports”).

7) She taught me how to love someone. My parents have been married for 37 years, and are still obviously in love. In the 25 years I have known them, I have only feared that they would split up once (for exactly one day when I was 10, and this was because I did not understand “divorce” and my father worked about 1,000 miles from home). My father, temperamentally (placid) and intellectually (scientific, quantitative) is nothing like my mother. I used to think that it was amazing they ever got along in the first place, but what strikes me now is how they compensate for each other’s weaknesses and reinforce each other’s strengths. They have a division of labor, and each of them handles what they are best equipped for, although they collaborate on every decision. On some pretty major issues, they have diametrically opposed views. They disagree, sometimes vehemently, but they rarely disrespect or hurt each other. If they do, they quickly apologize.

My mother’s most important interpersonal rule is that “in this family, we never go to bed angry [because only God knows if we will wake up]” and no matter how much she wants to, she never deviates from it. She also never lets any of us violate it. She never treats her marriage, or her husband or her family as disposable (or even replaceable). She forgives us our mistakes, even when we hurt her. I have never doubted for one day in my life that my mother loves me. Even when I know she is angry with me, hurt, disappointed, or all of the above, I know she loves me. I know this because she tells me – usually, when I see her, several times a day. She hugs and kisses me, because she knows small gestures are important. She does unsolicited kindnesses and surprises me with things she knows I will like. She never conflates “unconditional love” with the absence of criticism or judgment – when I have overstepped or underperformed, she tells me because she loves me, and says so. She never lets me take myself too seriously, and she refuses to allow me to slip into self-pitying victimhood, even though she is charged with my care and we both know I might die.

8) She came here for me. As I got in a taxi to go back to the hospital having been told “there’s something abnormal on your chest x-ray,” I called my parents. My mother didn’t pick up, so I talked to my father. I told him not to get her upset until we knew what was going on, and he promised to keep her calm. He did such a good job that when I woke up in my hospital bed less than 24 hours later, she was standing in the doorway. She was on a business trip to Newark and took the 5AM train to Washington – before she knew what I had. This didn’t come as much of a surprise.

My mother was 11 years old when she decided to give birth to me in America. At the time, she was living in a small town in Romania, and her parents were working hard to emigrate – to Israel. Fourteen years later, she was my age and left behind her family, her friends, and her home and moved 5,600 miles away. Seven years after that, she was a US citizen and I was born. My mother and her family could have accepted life in a squalid, poor, viciously anti-Semitic totalitarian state but they refused to. She could have stayed near her family and friends, avoided learning a third language, and given birth to me in a country where war never ends. My mother refused to compromise, and refused to have children until she knew they would live in peace and freedom.

Because I know my mother already made a transcontinental voyage for me, it did not surprise me to learn that she was willing to make another, shorter one when I was sick. After all was said and done at the hospital, we had to decide whether I would stay in my adopted home and keep working, or if I would quit work, pack up, and go home to Chicago with my parents. Quitting would put my career and health insurance in jeopardy, disrupt my life, and deprive me of distractions from my condition. It was an undesirable option, but life with cancer is full of find-the-least-bad-option situations and it was a distinct possibility.

We did not have the passionate argument for which I had assiduously prepared. My mother declared almost immediately that I would keep working, and she would move into my apartment to take care of me. Allow me to elaborate on the context of this decision: I am 25, not 15. My mother has a full-time job. During the week that I spent in the hospital, my parents were supposed to close the sale of their home and move into their new condo.

Sight unseen, she transferred to her company’s Washington office, and has spent less than a week in her new home. She knew no one in DC. We share a studio apartment. To put it mildly, I am not an easy person to live with. For medical reasons, I am not allowed to scoop out my cat’s litter. I am supposed to avoid nicks and scratches, and I can barely sustain the energy required to do my job and maintain a semblance of a social life, so I contribute virtually nothing to the upkeep of our shared home (I do pay the rent). I am not a morning person, and I can be a mean bastard. I constantly need pills and injections. Even before I got sick, I was persnickety about my food. I hate having cancer, and I hate being a patient. Occasionally, I fight off the Black Dog. I keep odd hours, and alternate between insomnia and hypersomnia. I snore. Loudly and often. Every other week, I go to the hospital and get shot full of toxic chemicals. This exacerbates all of the above problems.

In the time that we have lived together (almost exactly five months) we have had less than half a dozen arguments that one might reasonably call “fights.” None were particularly bad, and all were resolved quickly. She has complained only rarely, and never without cause. A lot of this is because she knows I am sick, and is holding off on punching my lights out until I am better. But we also get along because I love my mother, I respect and admire her, and I know she came here for me, and won’t leave until she knows I am safe again. It is so hard to forget how wonderful my mother is that even as I fight my cancer, I appreciate her enough to avoid pointlessly fighting with her over nonsense.

That said, I don’t tell her how I feel enough, and everyone that knows me should know how fantastic she has been - so I am posting this to my cancer blog.

Happy Mothers Day to her, and to all the mother figures in my life (you know who you are). Everyone else should find at least one mother to thank today.

May 6, 2008
May 4, 2008

Treatment 10 5/3/08

This is my first designed-for-blog post, and will be brief. I was treated on Wednesday and I have been struggling to deal with the nausea and pain. Each treatment is getting more difficult than the one that preceded it. I have two more chemotherapy treatments coming. Considering the possibility of additional treatments – because of a recurrence, or something worse - is terrifying. The thought itself, the act of writing about it, makes me ill.

Two items to file under “good news”:

1) My doctors believe I am unlikely to require additional chemotherapy in the foreseeable future. You can see the treatment protocols used by the Lombardi Center physicians responsible for my care. They are from the National Comprehensive Cancer Network, and show the “decision trees” that guide the process of treatment. You can see that I have two unfavorable factors (p.13) – “B symptoms” and “bulky disease,” but no others. The relevant page deals with Stage 2B Bulky Disease (p.7). I am likely to receive two additional chemotherapy treatments – since I have had 10 so far, that makes a total of 12. Once that’s over, I will most likely receive IFR. Debate dorks note: this is Involved Field Radiation, not an Integral Fast Reactor (non-debate dorks: a liquid sodium-cooled nuclear reactor that is supposed to reduce waste and proliferation risks). I was told these treatments are usually easier to tolerate than chemo. The radiation oncologists will decide about how to treat me but it will probably receive 5 15-minute treatments over 2-6 weeks, for a total of 30-36 Gy (gray unit, one gray = 100 rads).

2) One of the hematology-oncology fellows told us about a new study that suggests a rapid response to chemotherapy, indicated by an early “PET-negative” response, “was able to predict with 92-percent accuracy how effective a complete course of the chemotherapy would be. The PET scan was able to distinguish between patients who would achieve long-term control of their disease and patients whose disease would progress during treatment or immediately thereafter or would later relapse.” If you re-read my post about my February re-staging, you will see that my PET was negative. In other words, if this study is correct, there is a very good chance I will achieve “long term control” of my lymphoma.

In other news, Drake and Hen have returned to Kew Gardens.

Here he is.
Here he is.
And the brown lady… but they’re never around at the same time. Perhaps their lawyers (Jewish-looking sea-gulls, no doubt) were able to come to an agreement on visitation rights.  
And the brown lady… but they’re never around at the same time. Perhaps their lawyers (Jewish-looking sea-gulls, no doubt) were able to come to an agreement on visitation rights.  

Nightmare

I recently had a nightmare come true. I have discovered that being confronted with the reality of a nightmare: “you have cancer,” for example, is nothing like the nagging anxieties that accompany a long-running terror. I suspect it is one thing to be confronted by an insoluble nightmare: “your beloved dog is dead” and quite another to face a potentially-soluble one: “you need to fight off a treatable but deadly disease.” My experience with the latter has been that condensing diffuse dread into a defined challenge transforms an emotional quagmire into a task. Once the rational, purpose-driven, task-accomplishment frame of mind takes over, it is harder (but not impossible) to be terrified into quivering impotence.

Other times, as in the case of long-feared social confrontations, the reality occasionally turns out to fall far short of one one’s expectations. In my Passover update I described the “utter terror” I experience when I imagine the hoses of my catheter might “get caught on something and the catheter will be ripped out of my arm. It runs… into the vena cava (the big vein that brings blood to the heart)… I have a recurring waking nightmare where it gets torn out and I bleed out or lose an arm or something. I… have learned to sleep without really sleeping…”

On Sunday night, I was working on a final exam from my first semester of graduate school (I was admitted to the hospital on the last day of final exams in December). I was offered an A- but allowed to do additional work to make a run at a possible A. That they even made this offer says a lot about the kindness and character of my graduate program and its faculty/staff. Those of you who know me well will be unsurprised to learn that I felt compelled to pursue the higher grade. You will also be unsurprised that a) when my family arrived at my apartment in mid-hospital stay, it looked like a hand grenade had exploded inside a small International Relations library and therefore b) all of my reading materials for the exam had been filed away neatly (needless to say, untraceably) and c) in my typically ADD-perfectionist way, I stayed up until the very last possible moment working on the exam.

I fell asleep around 7AM and around noon, I leaned over the side of my bed and saw a smallish puddle of red liquid. Lest you think I am some combination of paranoid and intelligent, I saw this puddle and thought “hmm, that looks like it might be blood.” I then tried to inspect it more closely and tumbled out of bed, over my shoulder, flat onto my ass. I managed to miss most of the blood-like substance, at least. My awkward gymnastics also convinced me that I was not noticeably injured. I could not find a wound, and did not feel any pain, so I concluded that the blood did not come from me: a wounded victim of Anastasia’s mouse-hunting, a bloody nose (my mom’s nose, obviously), or something… my best defense is that I was very tired and less than 100% functional.

About two hours later, I was feeling a little better, and ready to shower. When I took off my shirt, I saw my catheter nightmare come to life.

It’s not as bad as it looks, and it didn’t hurt. The catheter is still 50% functional.
It’s not as bad as it looks, and it didn’t hurt. The catheter is still 50% functional.
May 3, 2008

Passover Update 4/19/08

All –

[Advance warning: I wrote this thinking that some images might help convey the experience of living with cancer. If you are easily upset by things like veins and injections, or images of cats and ducks, I suggest you cut and paste this into text or only read the first two paragraphs.]

First, the medical situation. In many ways, the news on this front is positive. As you may recall, I have to have 12 chemotherapy treatments (2 a month, 6 months). Every third of the way through (4 treatments) I am supposed to have scans to confirm that the treatments are working. I spoke with my nurse last week to ask why I hadn’t been pumped full of radioactive sugar and stuffed in a metal donut with spinning magnet doohickeys. She told me that my oncologist decided that my first re-staging scan (after treatment 4) was so good that there was no reason to re-scan this time.

This is good news (Mom says, “VERY good news!”) and in typically Jewish fashion, I have found a way of making it upsetting. Every time I get pain in my chest, or have trouble swallowing, I get a mild panicky feeling that something is growing in my chest again. There is a special kind of terror that comes from having found out about cancer from seemingly insignificant symptoms – in my case, night sweats, a very bad chest cold, trouble swallowing and breathing. It is hard not to become a hypochondriac. My oncologist half-jokingly chided me for complaining about “every little thing,” although he knows that I over-report because little things could matter in big ways. One particular reason I need to avoid seeming like a panic-stricken moron is that it increases the pressure on me to “(soft voice) see someone, a professional.” If any of you ever consider a run for president or Secretary of Defense, please consider fixing this problem: people like me can’t see “mental health professionals.” without jeopardizing our careers because we will have to tell the people who run our background checks and waive our right to medical confidentiality. Personally, I don’t like shrinks, so this doesn’t bother me too much – but a lot of people are coming home with combat stress. Their most valuable possession may be their Top Secret/SCI clearance (which opens a lot of private sector doors) and they have to choose between risking it and seeking care for their PTSD and other issues.

I decided that in this update, I would try to convey the everydayness of my disease. It’s one thing to explain to people what I have, how far advanced it is, how they treat it, how they discovered it, and other dry details. It’s another trying to relay the experience so that others can see through my eyes. I recently tried writing a letter where I attempted to explain how cancer has dramatically altered my life. I was trying to explain why even “cured” patients only “get over” their cancer in the way that one “gets over” the death of a loved one. After about 5,000 words, I realized that I was a) doing a bad job and b) nowhere near done. Keeping in mind the 1:1000 picture:word ratio, I have decided to make this note a bit of a visual show-and-tell so you all can walk in my shoes for a bit. I hope it works.

Let’s start at the beginning: every day when I wake up, I take my daily medicines: Allopurinol, Prevacid, Colase.
This picture shows my medicine basket (which includes other drugs I take for nausea, a lot of Tylenol and my prescription painkillers):
This picture shows my medicine basket (which includes other drugs I take for nausea, a lot of Tylenol and my prescription painkillers):

Allopurinol is a medicine that prevents Tumor Lysis Syndrome. As chemotherapy kills cells (hopefully mostly tumor cells) they “lyse” or collapse/explode. The remnants of lysed cells are toxic, and if enough of them accumulate in the body, it can cause TLS, which is apparently very unpleasant. Allopurinol helps the body excrete lysed-cell toxins. Everything I am taking, including the anti-nausea drugs and painkillers, causes constipation, which Colace helps mitigate. Prevacid prevents heartburn. Chemo drugs are “anti-neoplastic drugs” – that is, they kill all “new [cell] plasm” e.g. anything that is rapidly growing or dividing. Tumor cells divide more rapidly than normal cells, so the chemo kills them. It also kills or injures other cells that divide rapidly, including: sperm, mucus membranes in the nose and mouth (sometimes causing sores), and cells of the digestive tract, causing heartburn, indigestion and nausea. 

After I wake up and my mother tries to make me eat breakfast, I go to wash up. This used to be simple. Now, because of the catheter in my arm, a full-body shower or bath requires that I have my mother cover my arm with a garbage bag, poke a hole in the bottom, pull my hand out, tape the bag around my wrist and tie the upper opening tight around my upper arm. This keeps the catheter from getting soaked. Taking a bath (with a cup to splash water away from the affected arm) doesn’t really do the job because I also have to wash my hair. I’ll talk more about my hair later, but suffice to say that taking a bath in water covered in a skein of hair like a nightmarish Chemotherapy Sargasso Sea does not make a man feel clean.

Even before I take my clothes off, my cancer is externally noticeable. I have a scar on my neck.
Even before I take my clothes off, my cancer is externally noticeable. I have a scar on my neck.
When I was first hospitalized, they did not know what the mass in my chest was. A biopsy could provide answers, but this created a problem: Whatever-it-Was was wrapped around my airway and my superior vena cava and right next to my aorta. It looked a little like this (in the image to the left, the whitish thing towards the top of the ribcage is the tumor, the whitish thing towards the bottom right is the heart, and the image on the right shows how the heart is compressed by the tumor):
When I was first hospitalized, they did not know what the mass in my chest was. A biopsy could provide answers, but this created a problem: Whatever-it-Was was wrapped around my airway and my superior vena cava and right next to my aorta. It looked a little like this (in the image to the left, the whitish thing towards the top of the ribcage is the tumor, the whitish thing towards the bottom right is the heart, and the image on the right shows how the heart is compressed by the tumor):

The location of the tumor created a problem: there was no way to get access to the tumor for a biopsy without putting pressure on my airway or heart. Because my airway was already “in crisis” (read: very, very, narrow) further constricting it while pressurizing my heart was deemed a Bad Idea that Might Kill the Patient. My ingenious thoracic surgeon solved this problem by cutting open the little area where the scar is. It is right above the “notch” where the collarbones intersect. There are no major blood vessels, muscles or nerves there. Doing it this way avoided having to pry apart my ribs with a medieval-torture-device looking thing, or giving me a general anesthetic that might result in the “permanent closure of [my] airway.”  So, good news: no general anesthetic. Bad news: local anesthetic, which, it turns out, does not work very well on me (standard procedure is to use Lidocaine, which does not really work on me. They now know to use Markane (sp.?) but at the time, everyone was a little too worried about death to be too worked up about using excessive amounts of local anesthetic). Incidentally, the surgeon, a UC Berkeley alum (go Bears!), refused to let other surgeons do the surgery because she considered it too complicated for an inferior surgeon. No Operating Room had been booked, so she promised to stay at the hospital for as long as it took to get one. On top of that, she also made other members of her thoracic surgery team (most notably an anesthesiologist) stay. Several hours after her shift ended, an OR came open.  

When they did the surgery, I was fully conscious. I did not handle this event Like a Man. They accidentally dropped a sheet over my head at the start. A nurse apologized and said they’d move it in a minute. I said “I plan to lay here with my eyes tightly shut. Leave it, it helps.” They did, and only laughed at me a little.

Every day when I climb in the shower, I see the unpleasant, lingering side-effects of steroids. Some patients experience severe psychological stress from the scarring effects of sustained steroid consumption (see the NYT story below).
Here you can see my upper chest and shoulder. You should be able to see scars from steroid-induced sores, and largish blue veins. Because the tumor restricted blood flow and diverted my blood supply to feed itself, my body tried to build blood vessels around it. As the tumor was inside my ribcage, new blood vessels (or old, enlarged ones) formed outside it, just under the skin. When my oncologist first asked me “have you noticed that your upper-body blood vessels are a lot more visible?” I said “Yes, but I’ve been doing a lot of upper body work in the gym.” He laughed at me. He’s a nice guy, for someone who fills people with toxic chemicals for a living.
Here you can see my upper chest and shoulder. You should be able to see scars from steroid-induced sores, and largish blue veins. Because the tumor restricted blood flow and diverted my blood supply to feed itself, my body tried to build blood vessels around it. As the tumor was inside my ribcage, new blood vessels (or old, enlarged ones) formed outside it, just under the skin. When my oncologist first asked me “have you noticed that your upper-body blood vessels are a lot more visible?” I said “Yes, but I’ve been doing a lot of upper body work in the gym.” He laughed at me. He’s a nice guy, for someone who fills people with toxic chemicals for a living.
In other news, I have had no serious problems with the catheter that in my arm, called a PICC line. A woman who had a similar device implanted in her chest wrote a memoir that was excerpted in the NY Times. Having had quite a bit of steroids and a nasty conversation or two (ok, twenty) about my future fertility, I sometimes feel similarly about my sex life. Unfortunately, I remember the probable effects of radiation and chemotherapy on fetal development. Having been brought up with a strong, pro-choice mother figure, this probably wouldn’t have bothered me, but for my good friend Prof. Lundberg. Chris, in about five sentences explained to me why he is a single-issue voter on abortion. I can’t say that he swayed me on the public policy question. But as far as my personal choices are concerned, he persuaded me to err on the side of protecting defenseless life. For me, right now that means not taking a chance, however small, of creating a being with virtually no shot at a normal, happy life.