Monday, May 4, 2009

What the Hell is My Problem?

So I tell myself that I will just check the caring bridge page for this young man who was diagnosed just a couple months before me and who is the only person whose trials with this disease I have consistently followed thoughout this mess. His mom keeps a journal to keep us all up-to-date on his treatments, but also his life (college in the fall!), and her neuroblastoma activism, and also others in the fight, usually when they are in crisis or have passed. This last part is why I sometimes have to stop reading the journal. It just gets to me for reasons I don't think I need to explain. Luckily, you can usually tell by the first line of the journal if there will be a happy ending or bad news, and if I was smart, I would've just turned off the computer after that first line today.

As it turns out she wasn't reporting a cancer-related death today; just the freak occurance of a 19 year old dropping dead of a totally unexpected heart attack. But there were messages of support to other families in crisis (when I say crisis here, I don't just mean the crisis of living with cancer, I mean the heightened crisis within the crisis of relapse, or crisis of all crises, end-stage disease). So what do I do? I follow the links, from one caring bridge page to the next, and read one mother's agony after the other. I only stop when I find a truly depressing story: a beautiful little girl (not yet in the double-digits, I'm sure) who is riddled with tumors and starting radiation this week in an attempt to shrink the giant mass that is crushing her nerves and causing severe pain.

Only after my masochistic mind has found these words am I able to tear myself away. And before I can even ask myself why on earth I would torture myself in this way, I have my answer: I have scans again this week, Thursday and Friday. I can't bear the thought of my life, such as I have reconstructed it, being snatched away from me again. But the fear is there, so I seek out the tragedy of others in similar situations as a gateway to my own emotions. I think back to the last year of scans and see an AB pattern emerging (my nephew is at that level of math where you learn simple patterns like 'tonight I will sleep in the back with mom & dad, but tomorrow night I will sleep in grandma's room like I did last night--we'll make a pattern!'). Last June I got the first scare: a swollen lymph node or something on my CAT scan. But then in July no change, so things seemed okay. But come September the suspicious node has begun to glow on the MIBG--the surgeon showed me the digital image before he cut what turned out to be Neuroblastoma out of me, I let me tell you, it was as bright as an old-fashioned christmas light (remember the big bulbs?). But after blasting my life away with a few rounds of dynomite - I mean chemo - my scans looked more like they did last June, maybe even better. So according to my pattern, this time should be bad news.

But life is not a pattern. I had a perfectly lovely BBBB pattern going for two years before last June. My nephew's sleep pattern turned out to be grandma-mom&dad-mom&dad-mom&dad and so on. That's the kind of pattern I'm hoping for now.

Send a little extra no-cancer love my way this week to help me get there. Thanks.

PS - I am going to go finish packing my books right now -- Julia and I are moving into our first apartment together in Brooklyn and we are very excited (and also a little stressed). But one cool thing as I sort through all my stuff is finding all the gifts and letters and cards from all of you who love me and have helped me get through these last 3 and a half years. It really helps to get even a little card in the mail. I had saved them all and really enjoyed re-reading them, but in an effort to down-size my things as my new home is smaller (especially the closet, for those of you who are familiar with my current walk-in!), I had to get rid of most of those cards. So I am now shamelessly requesting that you send new ones! I am wary of posting my address in so public a forum, but I promise if you email me or post a comment here, I will get back to you with where to send any notes, packages, or other love-in-the-form-of-mail. :)

Sunday, March 29, 2009

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.

Wednesday, March 11, 2009


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.

Sunday, March 1, 2009


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.

Saturday, January 10, 2009

Mourning Vancouver

I have been blessed with not one but two extra weeks off from chemo. The reason, unfortunately, is that my bone marrow has been rather slow to recover after the two rounds of chemo and the ten days of radiation I have already had. But luckily I am in Vancouver and have been able to change my ticket to stay longer, I would say twice now, but I still need to change my ticket for tomorrow. It has been really great to get this extra time with Julia, and it has also made it possible for me to see other friends who were out of town still last week. I've also been able to do some work and reconnect with a number of workers I had met up here and it is good to see the work I started continuing. The organizer they have found to replace me is a really wonderful woman, my age, and we've been getting along great, which lessens the pain of being replaced.

But after putting down a $5,000 deposit in order to see an oncologist here and have my blood counts checked twice a week, it seems the obstacles to my returning here may be too great to overcome. I love this city and the team of organizers here and I would be sad to give it up even if my girlfriend wasn't here. I met with my director and the organizing director for the international union this week and they told me that it is simply impossible to insure me here. They even looked into getting me fully immigrated so I would eligible for Canadian health coverage, but as it turns out Canada is either too cheap, too smart, or too cruel-hearted to allow a cancer patient to immigrate. So I am stuck as a pawn in the broken US insurance racket. And headed back to my home local for my next work assignment--whatever that may be considering the level of treatment I will continue to receive for the foreseeable future.

Don't get me wrong--I love Local 100. It is my home. I love the staff there, and the membership. And the city I have made my home for the past 5 1/2 years. My best friends are there--one of whom is pregnant!--and it is comfortable and familiar. And it will be easier to balance work and hospital there without the added stresses of cross-continental travel and medical bills. And the union will continue to allow Julia to visit frequently, and for longer than a weekend, and I will be able to visit Vancouver as well. And after this campaign, Julia will be able to join me (assuming she is willing) in New York. And someday, when we are ready to move on, we can do that, too.

But right now, I am mourning the loss of Vancouver. Everyone and everything in it. And I am raging quietly inside at this fresh attack on my life by cancer. I am so sick of doctors and disease making life altering decision for me. And then this week to have this decision come down from on-high at the union, without even allowing me the space to speak my piece or ask for what I need and want. I know they have my best interests at heart, but that almost makes it worse. It makes it so I can't lash out and knock them over, claw at them like a wild animal, like I wish I could. It means I have to go on loving them, and forgiving their shortcomings. And it leaves me here, tears brimming my eyes, sorrow pulling down at my elbows, inside my chest, my limbs limp and my body heavy.

I am mourning the loss of Vancouver. And I am not yet ready to re-embrace my city, my home, my new life. I am not yet ready to imagine my new existence.

Monday, December 29, 2008

Nearly 2009

It has been too long since I wrote in this space, and it is hard to know where to start. Sometimes I think I worry too much about the family or the strangers or near strangers, friends of my parents, who read these words. Other times, I think that I hide behind that worry so I won’t have to work through my thoughts and feelings. And other times I choose to blame the fact that I am almost never alone. But tonight I am alone, and while my ears are screaming in the silence (shrilly telling me my short night’s sleep and pre-dawn arrival at the airport and cross-continental travel was too much for my tired body), there is a peacefulness to my solitude that has an almost miraculous quality.

I am in Vancouver, visiting Julia and reacquainting myself with the work here. It feels like the first time I have made a decision and done something totally for myself and made cancer answer to me. It is a wonderful feeling. I will be here all week, ringing in the New Year Canadian-style—whatever that means—and enjoying reconnecting with my partner.

I am also determined to figure out how to access the kind of in-between treatments check-ups and medical support I will need here if I am to fulfill my wish of resuming the work I started here last spring while continuing treatment at Sloan every few weeks. To that end I made some phone calls today, and managed to speak to 3 people at the BC Cancer Center here in Vancouver, two of whom were polite and varying degrees of helpful. I succeeded in not getting overly angry about the obstacles to getting a simple blood test. So far the roadblocks seem like standard red tape stuff, and not the truly absurd like what I encountered last week in Ohio.

On Friday I was feeling light-headed and low energy; sure signs of low hemoglobin (red blood cells). My doctor at Sloan and strongly suggested that I get my blood counts checked on Friday anyway, and I had a prescription for a simple blood test, a “cbc”, or complete blood count—the basic test to see how much blood you have (how many red and white cells, how many platelets), a 30 minute test that I have to assume is requisite knowledge for any phlebotomist. On the recommendation of my nurse practitioner I looked up Quest laboratories in Columbus. Quest is a national blood-testing company that my insurance covers and where I went once while in Florida to have blood drawn and mailed to Sloan for a special HAMA test; an experience not without its setbacks, but also quick and efficient. My experience in Columbus had utterly soured me.

First of all, they only have locations near the outer-belt of Columbus—apparently only suburbanites need routine blood testing and don’t want to have to go to the hospital every time. I chose Dublin, about a 20-minute drive from my mom’s house, because there were 2 locations there, so I figured we had a back-up in case one was super busy. Well, neither was busy at all because apparently they decided to close the day after Christmas—not that any such information was posted on the website, or at either location, for that matter. Luckily, a doctor’s office with a nice receptionist was open next door, and she gave us a pre-printed flyer with all the Columbus-area locations and phone numbers and hours (minus holiday closures) listed. I proceeded to call each and every one, only to get voicemail messages listing the same information as there was on the flyer. Convinced they must all be closed, I was nearly at my wits end, but trying not to yell in the quiet waiting room.

Mom looked them up in the yellow-pages and found an additional location listing, so I called and, low and behold, found a human at the other end of the line. But she closed in half an hour and had and attitude. She said I couldn’t go there if I wasn’t a patient of an adjoining practice, but insisted that a near-by location was open. Not having any other ideas, mom and I set out from the unfamiliar northwest side to find the outer-belt and head for the far east side. In the pouring rain. Did I mention is was raining? Pouring. Not safe for driving. Luckily, I called again and got a person this time instead of the machine. She confirmed that they were open and gave us directions that probably saved us an hour in that weather.

We finally arrive at the eastside clinic and I am seen right away. There are several questions about my diagnosis and prescription, but the phlebotomist let’s the lack of a “diagnosis code” slide and decides to draw my blood anyway (presumably in the spirit of Christmas). It takes two tries to find a vein not too scarred to let a needle in and my platelets are clearly low because even the dry stick bleeds, but hey, I have succeeded in getting the test. I should know shortly if my trials are over for the day or if I need to find a hospital to give me a transfusion and waste all evening in the hospital like I have wasted all afternoon in pursuit of a simple blood test. But no. It is not to be.

I ask the phlebotomist when I will have the results of the test, and she say’s probably not ‘til Monday, since my doctor’s office is presumably closed over the weekend. It is Friday afternoon, and despite her speculation that they are probably closed today, I know very well that the PDH does not slow down their constant attack on cancer just because Santa is in town. (I missed my goody-bag from Santa by one day this year!) I am confused, and ask her if she can call me directly with the results of the test as soon as she’s done. She explains that she’s not allowed to touch the machines or the blood there. Oh no, this blood is going to Cincinnati. A courier comes after 5pm and takes the blood to Cincinnati (a 3 hour drive from there), where the blood will be tested that night and the results faxed right away to my doctor—but by then their office will be closed. In the shock of this absurdity and the anger boiling quickly up from great depths within me, I stop talking and walk quickly out of the clinic, dragging my confused mother along with me before I can explain because explaining would mean exploding with rage—and what was the point of unleashing such a scene there in the clinic for the hapless, impotent phlebotomist?

Just to be clear: I was in need to a blood count so that I could find out if I needed a transfusion that day—not some time the next week! By Monday I would either have rebounded and made up for the missing blood, or, maybe, had a heart attack. Getting the results on Monday is useless and absurd.

When I got home I called my nurse practitioner back in New York and, after letting off a little steam, came up with a plan to have her call the clinic and have the test results given directly to me. Miraculously, she got through to the manager in Cincinnati and sent her a modified prescription allowing me to get the results myself and got me a number to call later that night for my results. They weren’t in when I went to bed at midnight, but when I woke up having to pee at 6am they were, and they were handed over without a problem. I was not in need of a tranfusion, but my hemoglobin was very low; 8.2 and anything lower than 8 is call for a transfusion. My platelets had dropped from 61,000 on Monday to 41,000; normal is 150,000-400,000, but unless you are bleeding transfusions aren’t needed until you drop below 10,000. So in the end, it was a relief. But as my uncle said the next day, if that’s everyday stuff, god help you. He had asked me about my new “setback” and I was very confused by this: I am hardly puking, I feel good, I am on a break from treatment, radiation is over—things are looking up. The only problem is, our healthcare system is defunct. Why on earth would my blood have to travel halfway across the state for a simple blood test? How is it possible there isn’t need or possibility of such a lab in the capital city, second largest metro-area in the state? Absolutely absurd.

Someday soon I will muse about the weird intimacy of radiation therapy, but for now I am content to release my discontent about blood work.

Sunday, December 14, 2008

Speaking of Christmas gifts and lethargy--brain lethargy, that is--I keep forgetting to tell/remind you all to buy cookies for people! I am not the biggest fan of the site name--cookies for kids cancer, it sounds like we are cheer leaders for cancer, but really we are raising money for neuroblastoma research. Lifesaving--possibly my life--new treatments that can't get funding from the usual sources because there aren't enough of us patients (cute as we all may be) to make any promise of future profits for bigPharma. So it is left to those of us actually fighting this disease in ourselves or our families to raise the money to save ourselves. Fucked up, right? But this little group, called Band of Parents--go to for other fun gift ideas--managed to raise a million dollars in the last year to catapult a humanized version of the mouse-cell torture, I mean treatment, that kept me clean for two years. The new version will help more kids because there won't be an issue with developing, essentially, an allergy to the cells because they're from humans, not some other species. It also appears it will be more effective. And it's coming to a cancerward near you by the fall of 2009!

That is, IF you all go buy some cookies for kids cancer. I bought some last year, and they are delicious. I gave to my co-workers at the Union to thank them for all of their support. This year I might just take my friend Sam's lead and buy them for myself. I won't lie, they aren't cheap, but almost all of the money goes toward research, and it's not any more expensive than getting cookies delivered commercially. Plus, it's tax deductible. So there you have it, no excuses, GO BUY COOKIES!!