Burgers & Beets

I really wanted steak and eggs, but I just couldn't see paying $22 for breakfast, even if I had had that much cash on me. So got a burger to try to boost my red blood cells and help my marrow recover in time for another round of chemo. I did the math recently, and I have, on a day-to-day basis, when I am doing well and don't need any transfusions, about half the blood of the average person riding the train next to me. Two-thirds as much if they are on the low-side of normal and I am on the higher side of anemic. Maybe only a quarter as much if the person beside me happens to be a pregnant woman.

So if I choose to take the elevator up from the subway platform rather than jog up three flights of stairs when I get home from at the end of a long day, don't assume that I am being lazy. And when I ask to slow down from my usual New York trot, it's not because I don't want to exercise--it is more likely because my heart is pounding after half a block, working triple time to circulate my diminished reserves of hemoglobin to my tired muscles. And that hesitation before I agree to check out a new restaurant in the next neighborhood over, it's not that I have a craving for the cuisine around the corner, it's just that I am calculating whether or not I can walk that far without getting nauseous. And if I accidentally glare at you on the train, or refuse to give up my seat just behind the bus driver when some senior citizen gets on, it's not that I'm cranky or insensitive; it's just that I am disabled, and this city is exhausting enough for the able-bodied.

But I won't tell you any of this unless I have to. Unless you notice that I am out of breath when I walk into the office, and you happen to comment on it. But even then I won't really explain. I won't give you the science lesson behind why my youthfully robust facade is not as strong as it may appear. Not as strong as it ought to be. And I certainly won't open up about how draining it is to really need to sit on the subway, but be too embarrassed to ask, and unreasonably angry when no one assumes that the patchy hair on my near-bald head is not the latest counter-culture trend but the results of chemotherapy, the give-away that ought to at least earn me a seat on the train. I won't tell you any of that because I don't want to admit that I am disabled, weak. I don't want to believe that at all, but it keeps presenting itself as a reality. And I do resent it when you don't recognize it, even though I don't want to be seen as a sick person and I will resent it even more if it is pointed out without amount of grace and understanding. I'd prefer it was treated as one more practical consideration when making plans, rather than an obstacle for me or anyone else.

It is so hard to be physically weak when my will is so strong. So I remind myself that I am lucky--that I am so much stronger than I was three months ago, and that I am still, in spite of everything, living the life that I want to be living, maybe not in all the details, but on the whole. The bigger picture is painted in the colors of my choosing. But then again, to butcher another cliche, isn't the details where the devil lives?

On Friday I had lunch with my boss, who asking about my health. I appreciated the gesture, even after he admitted that he had an ulterior motive: he needs more organizers and he wants to know if I can take on an organizing assignment. My heart jumped and I said yes, but then my brain won back control of my tongue and told him I'd have to think about it. So I ate a burger for brunch and bought beets for dinner, trying to eat my way to more blood and better energy. I would like so much to be organizing again. But he is also asking me when I feel like I just started liking my current assignment in the office--we just met a deadline that no one, including me, thought we could meet with as much success as we did, which gives me great hope for the possibility of really improving the functionality of our office. But it won't be possible if I don't keep putting an intense amount of energy and focus into it, and I don't think I can do that and add organizing to my schedule. I already spend at least 6 hours out of my work week at the hospital, or traveling to and from it. I cannot reliably predict when I will need a transfusion, which means the whole day is gone and I am passed out asleep from the benedryl, so I am no good for even checking in on the phone, which is a level of unreliability that is acceptable for over-seeing clerical staff, but not for organizing. And sitting behind a computer is tiring enough! Could I really handle running around the city visiting workers at home, or walking through hot commercial kitchens and trying not to slip on the wet scraps of food by the dish machine?

I don't know. But I would like to.

Mortality

A friend shared with me tonight some worries he has about a family member's health. I didn't think much of it at the time--just a normal topic of conversation--but now as I lie sleepless in bed it comes back to me, and I realize how cancer has changed the way I relate to the types of thoughts and concerns he was having tonight. He was worried about his aunt, first and foremost, but that thought lead to worries about her husband, who has his own worrisome health history, and how terrible it would be for their family, for his cousins to be without parents. And these thoughts led for him to thoughts of his mother, and worries about her health (although as far as anyone knows she is perfectly healthy) and wondering how he'll be able to help care for her from across the continent, when the time comes.

And all that seemed so normal I sort of brushed over it (to the extent, even, that I am extrapolating most of his concerns from mere fragments of sentences), and there was plenty else to talk about anyway, besides. But I realize now that there was something else to my blithe nature. Something inside me bristled at the conversation.

For one thing, the health concern involved a "precancerous" polyp, and as far as I know, all polyps in the colon are precancerous and as long as we get our colonoscopies when we are supposed to and have them removed, colorectal cancer is highly preventable. And since I have a cancer that came out of no where that no one even has a clue what causes it and I therefore had no such opportunity of prevention, I get frustrated by the reminder of other cancers that are more common, more preventable, more treatable, and, above all else, that just get more money and more attention than my disease.

And it reminded me of Ray, who died of colon cancer because he didn't get his colonoscopy when he was supposed to even though he knew it ran in his family and waited instead until he had symptoms. And all at once that makes me angry at him and miss him and love him and with that I could just hug him again and talk to him about Obama and Wall Street's demise and hear his laugh and just one more cynical comment from his with that almost undetectable undertone of optimism. Because Ray was, surprisingly, the most bouyantly optimistic person I have known.

But the real reason I bristled inside, the real reason I didn't want to dwell on the subject of my friend's aunt's mortality, is more a matter of perspective. I cannot think about someone from a previous generation passing--whether in good health or poor--without instantaneously wondering if I will even be alive for their funeral. I joke with my mother about her having some favors to call in when the time comes, but the truth is that I am afraid I won't be able to deliver. That I won't be around to return the favor. I can't remember what it was like to see things from his perspective--the unconscious and complete assumption that he be around, and healthy even, when his parents start to get old and need help, and long after they are gone, too.

I can't remember what that feels like.

Crazy

I just had dinner with a good friend of mine from college and as we are leaving I had this realization: this is my most sane friend at the moment, and I feel totally insane sitting here with her trying to have a normal conversation. And then on the way home I realized that this is also a person who is investing significant amounts of time and energy in her spare time working on the following recession layoff contingency plan: a homemade popsicle business. This sort of idea is just one more endearing example of the eccentricity that makes her so lovable, but it is worth mentioning in this context as the bar for sanity that I have set recently, and how far from it I am feeling lately.

Most of the time these days I feel like I am standing in the middle of a great windstorm with all the essential components of my life whipping around me, ungraspable. Maybe that's not true, maybe that's just the metaphor that comes to mind because I can still feel the wind on my cheeks from the icy winter snow storm I walked home in tonight. But I do feel off balance and it seems harder than usual to regain my footing these days. I know that is perfectly understandable--My cancer has relapsed, I am in a long-distance relationship, I am back to work, which is great, but the politics at union are such these days that I feel constantly underseige, one of my roommates just moved out, and failed to communicate properly about it, so those of us remaining were left scrambling to find a subletter while we continued to wait for the closing of the sale of the building we live in and get to meet the new owner and learn whether or not we can stay here, and at what price, and I will be starting chemo in a couple of days and the roommate took her couch. So it is perfectly reasonable to feel a little crazy. But I just don't know what to do with it all.

I know that writing helps me flesh things out, but there is just so much that I never know where to start. I think I am going to start seeing a therapist. I am a little worried that I will put up too many walls with a stranger to really let down in that scenario, but I'm putting up walls with everyone else in my life right now, so why not try a new context? If I could allow myself the space to cry in for an hour every week--even if I never finished a complete sentence--it would probably be therapeutic enough to do a great deal of good.

I'm not sure what else to say. I think I've been building walls against myself, because I can feel the turmoil building in my chest. And my brain can list all the things that are making me crazy. But my brain can't quite access the feeling in my chest to be able to articulate the emotional consequences of that ever growing list of worries my brain keeps adding to. And so I am all stopped up. And I wish I could pour baking soda and vineagar down my throat to unclog my pipes and have done with it all.

I guess that's sort of what the chemo is trying to do.