I'm sleeping wih someone

It seems people make a big deal out of focusing on the positive, the nice images. So here's one:

Sometime around 4am. The scream-whine of my roommate has knocked me out of sleep again, but I am used to it. The light is climbing, probably already dawn out at Robert Moses Beach on the South Shore. Here the weird new-town buildings across on Roosevelt Island are back-lit by the growing gray white blue. The river is still, changing its mind again before spin-churning either up or down for a tide. No tugs pushing gravel and gas, no cop boats cutting deep Vs with their twin outboards.

And across from me, almost on the windowsill because of the height of the cot they have let her sleep on every night so far, is my wife. Right where I can reach out if I need to. We do that sometimes, in the middle of the night. When night sweats or the roommate pull me out of it, when I have to go measure my pee, when I am just scared and there's nothing to do but be scared. She'll sense it, or I'll move and she'll see me. I reach out from my mechanical bull of a bed. She'll reach out from under our sleeping bag on the cot, and we can just touch hands.

Like that excerpt from Michelangelo. She's the artist, so I guess I'm god. Nice to feel that way as the light grows.

Live! Direct From Hell! This Is Spinal Tap!!

So now I think I can put the Spinal Tap references to bed. Partially because, as gnarly as this looks, it wasn't painful, and partially because even I know when I have beaten a joke to death. But again, when N told the two techs that I loved the band, the reaction was about the same as if I had said that you always have to respect the coaxiality of cable...crickets. Sheesh.

More important, this tap had two jobs and seems to have done both so far. The first part was to take and check fluid again to see if I have any baddies in the nervous system, and so far I do not, which seems to make everyone happy.

The second job--the syringe photo Neela calmly took above--was the insertion of chemo directly into the column so that it can get to the parts of me they want it to with the least obstruction. And that seems to have gone well also.

At some point between getting the needle in and draining some of my, I don't know, memories of third grade or whatever you lose when they take spinal fluid, the tech said to her partner 'can you take this?' Then there was some mumbling, then he took over, then she left, then he said "I think she's going to pass out."

I didn't know if he meant N or the other tech, as I was kinda paying attention to not moving one friggin whit. Turns out it was the tech--N was rock solid--and she hadn't eaten or something, and she is dedicated enough to her job to not want to risk any sort of wobble with my spine in her hands. So in the end I'm OK with that. Go get some air. Have a bagel, learn to macrame. Fine by me.

This means I have now had two chemos. Now they watch me for a day or two and I get some more--still not through all they intend to hit me with. I think that may be by the weekend, so each chemo now is something new and, clearly, sometimes with different delivery systems.

Also taking the steroid prednisone, so I am looking forward to 'Roid Rage any moment now--scream and yell, strangle a hooker, and hit 500 home runs. You know, another day as an American hero.

My step-father Jim had an issue with his chemo that the 'roids kept him jumpy and made the first night's sleep after that chemo tough, but so far so good on my end. I have other reasons to not sleep well, but that is a post or two away: Stefan.

For now just I'm pleased to have gotten past another hurdle.

There are cheesy-but-well-intentioned "Walk your way to recovery!" sign along the ward. 175 feet per hallway, two hallways with a short turnaround at each end. So I did the math and 15 laps of the ward is a mile.

Now I have a workout again. Day one took 22 minutes or so. Today took 18 and a half. Gotta keep the longer goal (for those not following along: not being dead) in mind and not push myself, but good to have some accomplishments and chores while I am in here.

Mom and Jim come back up this weekend, which will be another wonderful diversion and help, as it was last time. I feel like I will bore them to tears as I have such limited movement, but I think my Performing Bear DNA needs to maybe just cool it for a while and not worry so much that everyone enjoys their time with me.

They are surviving their own cancer scare with flying colors and their experience and 'over here from the other side' outlook helps N and me line up priorities and mindsets.

They are not out of the woods any more than I may ever be, but the first battle was won, and the methods used were similar, so it is nice, for any number of reasons, to have them nearby and so generous with their willingness to sit in a hospital room and watch me watch them staring at me, while N watches all of us.

Now I am on the team!

At three in the morning I was given my first two chemicals through the newly installed double-tap IV tube system that utilizes my Medi-Port. Vincristen and Doxorubicin--assume crappy spelling. The second of the two is the trade name of Adrimyacin, commonly referred to as the Red Devil which is also the name of a cancer charity near and dear to my soon-to-be-stressed-by-chemicals heart.
So I feel it has begun. Which I have been waiting for for a while now-nobody's fault, and I cannot fault any of the care I have received at any point so far, but I just wanted to get started, get fighting.
Part of getting started included changing doctors and hospitals, and I am now a tenant at New York Presbyterian/Cornell Medical/Columbia/Episcopal/Rosenberg, Wakefield, and Monsanto Hospital Powered by The Home Depot and Brought to You By All New Oxy Cleen!
Was going to insert a pic but cannot figure out the iPad just yet. Yes that is right, I have an iPad now! And all I has to do was get cancer. So hurry right out and swim in the Gowanus or whatever will get you sick fastest, because they are the fun cool tool of the month.

Anyway, enough for now. The opening round went deceptively well and I got blood transfused and some more platelets in the middle of the night to prep for more chemo in a few hours.

Live! Direct from Hell! This is Spinal Tap!!
(I am going to beat that one to death until it isn't funny to me, so settle in for a long ride).
My next chemo will be via spinal tap, so that should be fun.

Run-up to the present, eventually

Still trying to get caught up to now. And where better to start than with Sperm?

A couple of people--one pleasantly embarrassed union colleague--did have the guts to talk to me about banking sperm when the diagnosis hit. Neela and I were gearing up to 'try,' as the somewhat bloodless euphemism puts it, this summer. So Murphy's Law gets a point on timing there.

While there is always a chance that chemo doesn't permanently sterilize you, it is just a chance, and banking makes sense. You are supposed to 'abstain' for at least five days between 'gives.'

Off we go to the sperm bank--insert travel music here. The Sperm bank is in the Empire State Building, the largest phallic symbol in the universe. We choose to see that as a good omen as opposed to rank mockery.

The man running the sperm bank is named...wait for it...Romeo. I will leave you with that one and you can make up your own funny line for it. I'll wait...


I will now jump ahead 30 seconds, I mean 40 intense seconds, oh screw it I mean a minute, to when I emerge from the somewhat surreal sterile lust that is the room they provide. I walk back down the hall and round the corner, precious Tupperware in hand. I give the hopes and dreams of my ego and our life together to Romeo, and he goes "Yay!" like I just finished a little race, or I am a baby who managed to pick out the dinosaur from the other stuffed animals correctly. Very, very odd.

Because of pre-chemo timing I am able to bank another time, and it looks like the numbers etc are good. So if you all meet some kid of ours in a few years, feel free to maybe hold up a sippy cup or a casserole dish with an air-tight lid and say "Look familiar?"

While we are in my crotch, let's move on t the PET CT Scan. they take you into a room and inject you with radioactive juice that attaches itself to glucose-seeking cells, which means cancer cells more than the rest of your body. Then you sit for a while so it can circulate, then they scan you and see where the cancer cells are hanging out.

The toxic juice collects after its journey in your bladder because your boy is smarter than modern medicine and thinks maybe the radioactive shit should be disposed of as opposed to injected. This means that you are somewhat radioactive until 3 half-lives of the juice have passed, which is about 30 hours. So you are supposed to, if you wanna be safe, stay 6 feet away from people and pee a whole lot. Which is, I guess, better than being told to stand right next to people and pee a lot.

I spend the rest of the day trying angle my bladder region away from my wife, which means I am walking like an old Tim Conway character from Carol Burnett. And I sleep on the hide-a-bed to be sure. It looks like the PET CT came back good, that I have cancer but it is not rushing to any places that would be more worrisome. it has moved to the lymph nodes, but that was to be expected with this diagnosis. they are a bit swollen but not too bad.

A friend has hooked us up with a classmate by now who has gone through a version of what I have, and he is being very generous and getting us in touch with his Dr, who is out of an Upper East Side hospital, that, while being in the worst neighborhood in the whole world, may offer the best care. So Monday is meetings with Drs from the current team and possibly the new team, and we will make a decision.

Currently I am slated to start chemo Tuesday April 27, a day that will live in infamy...unless it changes.

My mother and step-father came up on short notice from Baltimore and have been wonderful, balancing care and concern with humour and companionship. And elbow grease. We took a whole Ford pickup load of crap out of here that they will drive back to Baltimore for us so that the apartment was easier to keep clean and livable. A friend of N's made killer lasagna--one meat, one veg--that didn't stand a chance against us.

N is still a sequoia in the middle of this, mandating and listing and reading and holding and frankly making me feel like maybe 'the one with the cancer' is the eaiser of the two jobs. I could start on the whole 'I don't deserve this kind of love and loyalty' thing here, but frankly it would sound disengenuous and affected...and she'd kick my ass. I'm just lucky and we'll leave it at that.

Mom and Jim head out again tonight--Jim managing to keep his reunion with his High School Basketball team, which makes me very happy--but that's probably good timing if that's when chemo starts. I will have enough on my plate, and as wonderful as it has been to have them, N and I will probably cocoon up in whatever reality medical poisoning brings and get used to the new world order.

Neela also has a dentist appointment Monday, which is a second point for Murphy's Law--it is either a cavity or a root canal. When it rains...

I think that pretty much brings everything up to now. I am sure there are things I have missed, and I am sure there are things to which I will refer as I go along that I was not nice enough to put in here so far. But that should get us all somewhere near on the same page. Except of course that I have cancer, and you don't. Unless you have it too, in which case I feel very bad for you, but you should be off writing your own damn blog, and not hanging around mine. Go on, shoo!

Catching up faster

So I could mumble on and on about what has happened already but there's been a lot and I think--hell, I hope--that there's lots to talk about moving forward and so I will try and just get scrolled forward to 'now.'

After we got enough of a diagnosis to send the first post's email, we were just buried in tests.

Echo-cardiogram: a sonogram of my heart, ostensibly to make sure it wasn't weak because chemo hurts the heart--along with everything else. The oddness here is that my name means something totally different to cardiologists and heart people. My great-uncle--or whatever you call people that far off in the branches of the family tree--Jeff Holter and his either father or son (sorry, not sure which way the lineage goes) Norman Holter invented the Holter Heart Monitor. So cardio people always say it right on the first try. But this cardio center actually had a room they referred to as Holter. So during our longish wait for my turn, we kept jumping up as the group behind the reception desk kept shouting to each other "Have you cleaned Holter?" "Seriously, Doug, get Holter washed out because I have to put an old lady in there in ten minutes!"

The Echo went a little weird because my running and training make my heart act different, so I had to hold my breath extra to try and stress it for the pictures, and the numbers came back a little low in the 'contracting to pump the next batch' category, but Dr R said that is what happens when your heart is extra strong--it is just hard to piss the heart off enough to really make it show you what it has. I like that: my heart's a fussy, yet muscular, diva.

Head MRI: lie inside a toothbrush travel-case for half an hour while the plastic machine around you gurgles and thrums like the kids who play paint buckets as drums on the subway platform. Then they give you a shot and you go back in for 15 more minutes. Head MRI came back clear, so another indicator that the cancer hasn't gone in places that would make everyone a lot sadder.

Live, Direct From Hell! This Is Spinal Tap!!!!

OK, I gotta say, I was looking forward to this one. One of my favorite bands, in all seriousness. And the Spinal Tap has the reputation, you know: Most Painful Thing Ever!

Kind of a let-down. Apparently the pain thing is from the old days. It never actually hurts: it is more just a destruction of your sense of self-protection. You have to curl up in a fetal ball like a scared kid or a dog under the coffee table in a thunderstorm, and then, when the needle pops! through the sheath and into the spinal fluid, you just know that the person behind you has all the power. It isn't pain, but if the person twitches, or you piss them off, he or she can invade you and ruin you in a way you've never thought about before. It is almost liberatingly terrifying, like learning to see a new color. A color that can flay your nerve endings, I guess.

Then, when the doctor was done--having taken a bunch of vials of fluid from an area I didn't think had that much to spare--and I shouted Hello Cleveland!!...Nothing. The guy had no idea what I was talking about. Zip. C'mon, you do Spinal Taps, fer chrissakes! Rent the dvd. Sheesh.

Tap came back clear, another positive indicator.

Then I get surgery to take a lymph node out and biopsy it, and to put in a Mediport. The surgeon who did my last hernia, Dr. P, does this as well, and it goes as well as the stealing of a hunk of your body and the insertion of an ipod into your chest can, I suppose. I didn't react well to the anesthesia--really impressive how a bunch of doctors and nurses don't even really stop their discussion of your procedure while you gently puke bright yellow whatever off to the right side of your mouth. They just sweep it away, replace the sheeting, and move on. But because of that I felt a bit more of the operation--not pain because there was local, but all the tugging and yanking that makes you realize that surgery is as much carpentry as science (not to take anything away from the craft, but at some level it is just a guy stuffing something that wasn't factory-installed into your body, so there's a good bit of elbow grease.) Imagine putting a new car radio into a 1991 Jetta one summer day, but you're the Jetta.

The Medi-port is, frankly, fascinating. I love stuff like this; I was a big fan of the The Way Things Work books. It looks like a tadpole with huge eyes, and it makes poisoning you a whole lot easier. It sits under my left clavicle, under a very obvious bump, and the 'eyes' of the tadpole are pierce-able bubbles of a tough plastic. A needle slides through the somewhat tough skin of my chest, and into the port's bubble, and then they can give me whatever they need to. The tail of the tadpole is a long tube that goes way down into my bloodstream, so the delivery is more efficient. The two eyes of the tadpole mean they can alternate which bubble they pierce and that means that I can use the port longer before infection-risk and over-use mean they need to replace or remove it or whatever. Cool stuff. Though when they were done my transfusion--the first time the port got used--they seemed to push the flushing/cleaning fluid into there way too fast. Guess I just have to assume they know what they are doing. Whenever I see someone pushing a syringe of shit that fast into someone I have flashes of James Bond films and the like where that's the way to kill somebody.



I have been transfused with platelets and two units of blood so far, and it seems to have gone well. The platelets made me less likely to bleed out, bruise, etc, and the transfusion did a huge bit to getting me some of my energy back. I felt a lot better after the first blood unit when the Tylenol was kicking in and the new blood was pumping. By the second unit my somewhat permanent headache was back, but I still felt so much better.

The morning before the transfusion was the so-far lowest moment. I was tired, scared, shaky, achy, and mainly just as weak as I've ever been. Tears, befuddlement, the works. Neela took it all like a caring rock--looking back to that morning, she amazes: just keeping enough forward momentum to get us to the Cancer Center, but absorbing my freak-out and lowness, taking it into herself, so that I could get past it and get there. A simple act of absorption and care that greased the gears enough to get me there and transfused, and then I felt so much better, and a little ashamed to have been so low so early on in this, and I felt the first twinges of the terror at how bad this could get.

But we got there an did what we had to do, and it was better when it was over. That's what I remember: that's what I make sure I remember.

I will try to get through the rest of the 'past' in the next post so we can go forward, and then I can really ramble. That's what I am looking forward to: mad ravings! Yeah!

OK, let's back up

It is April 14th. I am walking up 16th street calling my oldest friend Henry to wish him a happy 39th birthday, and I am pretty sure I have cancer or something.

The day before our GP, Dr. B, called with blood test results. I was scribbling things like 'blood low, plat low, red cell low' on a Skidmore note-pad that was the nearest thing at hand. That pad is now an integral part of my treatment.

Neela walked in, hearing something in my tone. I wrote extra hard 'Leukemia' on the pad above most of my scribbles, where she could see it.

Se just said 'no' and sat down, straight down onto the couch in a kind of elegant collapse that is really solid and weighty, but already with a sense that the person next to her is sick and needs to be cared for, needs to not have a body slam down on the couch next to it. In retrospect--and I think most things of value are found in retrospect--it was the beginning of the fierce protection she has already stepped into for me.

The next day, the 14th--I will get better at this blog-time-handling thing, hopefully--we spend the first of what will become many hours with Dr. R, a scattered but deeply involved hematological oncologist (blood/marrow cancer guy). His lab coat could be cleaner and his office papers could be more arranged, but at no point do I think he has any other interest than making people better.

He takes a core sample for marrow from the back of my pelvis. Neela holds my head and helps because I have been having extreme bone pain in the front of my chest and so lying on my stomache for anything is really rough. I had to lie on a blank slab of x-ray table a couple of times the day before for chest x-rays back when we were gloriously only worried I had busted a rib (oh those were the days). And was, o that point, the most pain I had felt in a long time.

So N is holding my head and Dr R is leaning most of his weight into the core thingy--like some reveler on a blanket trying to get the corkscrew deep enough into the wine bottle, except the cork is my ass. After a second try he says, heartily "well, you've got nice strong bone!" and leans into it again. N says "Oh, OK" and has to turn her head away--she's got guts of steel except when people she loves are getting hurt; we'll probably grow some callous over that.

He finally gets through to the marrow and takes his sample. He has looked at the previous day's bloodwork and thinks more Lymphoma than Leukemia, but that final diagnosis will waver back and forth until, frankly, ever.

But he knows it is a cancer of some type. He assumes we'll beat it, or at least try hard as hell, but I have cancer; it is now just semantics.

Which brings us back to me, walking up 16th street, trying to sound normal as I wish a friend a happy 39th. A friend who lost a fiance to cancer years ago.

Ah, hell.

First email

This is the email I sent out when we first told people. We'll start there and build.



Hey everyone! I have cancer! How are you?

OK, we've gotten that over with. Neela and I are writing to tell you that I have been diagnosed with what the doctors refer to as a likely curable B Cell Acute Lymphatic Leukemia/Lymphoma. Or something.

There're a lot of words up there but 'curable' is the one we are concentrating on. We are still in the process of getting a massive amounts of tests, so nothing is totally official or locked down (except that it's definitely cancer), but the general info seems to be that I have a very aggressive form of blood/bone cancer that--because it is aggressive--is treatable and hopefully curable. I will likely start chemo early next week, and it looks like it will be a rough few weeks of chemo and then a longer road to remission and recovery.

But I don't want anything to sound too certain as we are still getting all our info in order.

Suffice to say this comes out of the blue and kicks us in the ass, but we are handling it as well as can be expected and trying to concentrate on the road to beating the cancer. I have had to postpone or cancel a bunch of running races and multisport or endurance events and I fully intend to return to all of them as soon as possible. I hope to be head-banging and driving extreme distances again very soon.

We apologize for the mass-mail but we have a lot to concentrate on and schedule these days and I get tired more easily than usual. Nobody will be punished for not responding. As lovely as good wishes are, they are fine in the ether: answering a dozen emails will be as draining as it will be helpful.

For those who are curious, a series of crappy results in races and an oddly painful set of push-ups sent me to my doctor last Monday, and the blood tests he ran showed us we needed to get going. I had the same blood tests in January before hernia surgery and there was nothing wrong, so this is clearly a quick disease. We're trying to be quick about handling it.

In the next few weeks and months our schedule will, obviously, be at the mercy of doctors. So we apologize in advance for whatever we skip or miss. But rest assured, it is our intent to very soon be back to enjoying, mocking, or avoiding you all as soon as we can.

We'll keep you updated as much as possible. If we need anything we will let people know, but if you don't hear from us it is simply that we are spending our time and energy on my health.

Find a loved one and hug them. Thanks,

Holter and Neela