11 months since diagnosis.

What. The. Eff.

God effing damn it.

Am I really still here? “Is this going to be for forever?”

I’ve been doing a lot of reflecting lately. I mean, other than reading, watching TV, and playing video games. I’ve had a hard time finding things to say. Or rather, how to say the things rattling around in my head.

But, I’ve never been one to shy away from a challenge, or to let my struggles defeat me. It may take some time, but, shit, I’ll get there.

I’m finding that the closer I get to potential freedom, the more I’ve had difficulties maintaining a positive attitude. I have been utterly incapable of motivating myself to work out and get back in shape.

Part of that, I think, can be blamed on the reduction of my budesonide (steroid). As its come down, not only do I feel less and less like Superman, I’ve been having more and more blah days. My stomach and bowels have generally been, at best, annoyed with me. And at worst…well. Let’s not get into that, shall we?

A few weeks ago, it got bad enough that I had to go to Sloan, and get IV fluids and IV magnesium. I forgot just how much it burns to get magnesium through a peripheral vein. The last (and only other) time I got it was when I was initially diagnosed. At that time, I had the IV placed in my forearm, and it only really burned right around the site of the IV. This time, the IV was placed in my hand, and my entire arm felt like it was on fire, while also having a pulled muscle in my forearm.

Like I said, unpleasant. I definitely missed my PICC line and the Hickman catheter at that point.

My friend Jess will understand – Setbacks fucking suck. Er…effing. Yeah.

But luckily all the tests came back negative, so the cause wasn’t a virus or anything, it was just more of my body being generally cranky and irritable. Understandably so.

Another part, I’m finding, is that my doctor isn’t sharing the whole story of things with me. I’ve had some conversations with a few people (Jessie, notably, though others as well), and it just seems to me like Dr. Barker doesn’t “get” me as a person or as a patient the same way that Dr. Roboz did.

There were times in Dr. Roboz’s office where she would explain something, and my parents would ask a question, and I would get exasperated. It would be something that I had tried to explain a few times, or something that I just didn’t want them to bring up, and every time, Dr. Roboz would look at me, and would patiently explain pretty much exactly what I said, giving it the added weight of an actual doctor with actual know-how. Several times, particularly during the process where I decided to get the transplant, my parents didn’t necessarily understand why I would go through such a risky procedure when things were already going so well with the chemo I was already getting.

She looked at me, looked at my parents, and said “Stop me if at any point I’m wrong, Anthony, but I think he feels like this <exactly how I felt, using simple language as well as doctor speak to illustrate both to me and to her, and to my parents, why I made the decision I made>”. Dr. Roboz is awesome, and she and her PA have both sent me numerous emails to check up on me. I’m not even going to Cornell at the moment, and she even came to visit me during my transplant. I pretty much almost cried. Long and short, it is the absolute most ridiculous set of circumstances that led me to her office, and I will be eternally grateful to her and her staff.

Dr. Barker, on the other hand, is starting to get on my nerves. Initially, I picked her because she was blunt, direct, to the point, but still managed to instill confidence, and display empathy and a connection with what I was going through. She’s the only doctor that point blank told me that the TRM (treatment related mortality) rates of a cord stem cell transplant are 25%. She’s the one that told me that over 50% of patients experience GVHD, and that 10% of that is fatal.

She was what I needed at the time. A reality check, while remaining an optimist.

But in my recovery, I’m finding that she seems to avoid telling me the whole reality of the situation. I find myself googling my questions, or asking med students, or oncology residents, or PAs for answers, when really, I should be asking my Doctor.

And honestly, it’s pissing me off. I think I have displayed a pretty enduring capacity to acknowledge the depth of potential dangers involved in my situation. I think I have wrestled with and ultimately grasped some difficult concepts. I’ve made some of the hardest decisions I’ve ever had to make in my whole life. If I wasn’t before, I sure as shit am now a god damn Adult(TM), and I wish my doc treated me as such.

Ultimately, while the blame rests squarely on my shoulders, I’m starting to realize why I’ve been in such a physical funk lately. Every other time in my life where I haven’t kept some kind of physical task list, or had some routine that was striving for a goal, I have ended up overweight, unhappy, and out of shape.

Not knowing when or if my solitude will come to an end eats at me, slowly but surely, until my motivation is gone.

So, this Wednesday, when I go in for my big 6 month exam, all that shit ends. I get my biopsy – if it comes back clean, well, fuck – that’ll be just under a year of being cancer free, and if you make it to 6 months with no signs of a relapse post transplant, it bodes extremely well for your long term prognosis.

I also get my immune function test done. While the results for the biopsy might take awhile to come back, the immune function results should be available by the time they finish my biopsy. And again, the results, most likely, will allow me to go back to work and move back to my apartment. Best case, I’ll also be allowed to socialize a bit more. Worst case, status quo remains.

But the biggest thing, is that I’m going to have a talk with Dr. Barker. I haven’t really planned out what I want to say, but mostly, that I’m hurt by her lack of trust or understanding in who I am as a person and as a patient. That her behavior is actively a part of making my recovery more difficult.

And while it’s probably too late to really do much good for me – I’m already passed the most difficult and trying parts of transplant recovery (except for the whole..chance of relapse, thing), maybe the next time she gets an intelligent young person in her office, she can treat them more like the adult they are, rather than the kid they might have been.

Also, I know that a number of mothers read this blog (including my own), so I just want to wish all of you a very happy Mother’s day, and I hope you all had wonderful days.

However, a few interesting things to note.

First, I got approval last visit to go to my eye doctor and get my eyes checked, to see if my glasses prescription was still accurate. We figured, if it’s not right, it could be contributing to my headaches. Well, as it turns out, my glasses are about 25% stronger than they need to be, which could definitely be contributing to eye strain/fatigue, and leading to additional headaches. Then we thought about it, and realized, wait…am I even allowed to go shopping for new glasses?

So, today, we asked about that, as well as getting a haircut. I haven’t had a haircut in almost 2 years, but obviously, I didn’t really need one for most of 2012. The hair stylist I went to, though, Kelly, pulled some magic, I think. Initially, I was pretty pissed that my straight black hair had turned curly and unruly, but honestly, it’s starting to grow on me.

We also stopped by the eyeglass store, and got a new set of frames with the new prescription in them. Shockingly, they could be ready as early as tomorrow or Friday, so despite not getting the test I wanted done, this week is turning out to be pretty sweet.

Also, it’s my Dad’s XXth birthday (don’t worry Dad, your secret is safe with me) today, as well as fellow leukemia patient Nikki’s transplant day. I think it’s auspicious that her new marrow’s birthday falls on the same day as the birthday of the luckiest man I know. So if you have any extra good will lying around, please keep her in your thoughts as well.

Finally, I leave you with a before and after:

Before, scruffy-Tony:

After, or as Stephanie dubbed it, “Spiffy”-Tony:

Books

Using GoodReads, I went back and updated every book I’ve ever read on any of my kindles so that they have accurate (ish) read-on dates. I did that because it has some pretty cool stats that let you see how many books you’ve read in a given year, and how many pages they represent. It also let me see that I went from reading 10-15 books a year, up to 52 last year, and 30 so far this year. And that’s despite not really reading during much all of November or December. Anyway, here’s the stuff I read, in no particular order:

The Dresden Files series, by Jim Butcher

This series is just fun, popcorn style urban fantasy. It stars a Wizard who works in Chicago as a PI. Yup. The coolest part is that while each book is stand alone (there are 14 of them), and fairly short, there are also over-arching plot points and twists all over the place, and the world building is great. It, like most things I like, is firmly based first in humor, followed by great action, and touched with a surprising amount of emotional tug. If you’re into books with magic in them at all, I highly recommend this series.

Codex Alera series, by Jim Butcher

Book 14 of Dresden was released in November. I started reading the series in September. I read all 13 books that existed at the time in 9 days. Pretty much since the day I finished book 13, I’ve been hunting for another series like it. Well, the same friend that recommended Dresden mentioned that Butcher’s other series (this one) was really good. For completely different reasons, this series RULES. Legend has it that Butcher wrote the first book of this series on a dare – that he couldn’t write a novel based on the Roman Empire and Pokemon, combined. Now, I know that sounds really weird, but somehow, it totally works, and it’s totally not lame. I promise.

The Wheel of Time Series by Robert Jordan (and finished by Brandon Sanderson)

Ok, so I lied. I will mention cancer. When I was first diagnosed, after a flood of other thoughts, one thing that hit me was that I might not ever be able to read the end of this series. I’ve been reading it pretty much since I was 7 or 8, it’s 14 books long (now), and every book in the series is between 600 and 1,000 pages long. It’s an epic journey just to read them all, and so much happens I just can’t explain it. But, I was happy as humanly possible that I made it to January, when the book was released, and that I can rest easy, knowing that I know how this series ends. Serious fantasy novel fans only. Not for the faint of heart.

The Dark Tower series, by Steven King

This is up there with the Dune series, the Lord of the Rings saga, the Wheel of Time, and all the other classic sci-fi fantasy series. It’s always mentioned in lists of the best of all time, and so I finally sat down and read them all. While there are some lulls and some moments that you wish King had been able to create a more creative way to resolve, all in all, it’s found it’s way into being one of my favorite series of all times.

Various Short Stories by Brandon Sanderson

Mr. Sanderson is a ridiculously prolific writer. He puts out more than one full sized (700+ page) novel a year, plus a shorter young adult novel, and he STILL finds time to publish short little stories that he insists his publishing house put on amazon for a dollar or two, DRM-free. He’s kind of awesome, and all his stories are a blast.

Tale of the Otori series

This is like a historical fiction of Japan, filled with ninja and samurai, honor and betrayal, love and loss. It starts out with some incredibly strong books, but it really peters out after book 4. I stopped reading it. One of the only series, ever, that I didn’t finish after I started.

The Iron Druid series, by Kevin Hearne

Yet another attempt at finding another Dresden-like series, this one came recommended from Brandon and Greg. So far, there are only 5 books, and they’re only about 300 or so pages each. Really short reads, but awesome world building, awesome characters, and uses and abuses all kinds of myths from various cultures, including native american, russian, japanese, norse, and Irish. Fun magic system, and quick reads.

Various Stories set in the Culture Universe by Iam M. Banks

Banks is a prolific writer of science fiction who was recently diagnosed with a terminal illness, and he’s unlikely to make it to next year. His books are all based on a future utopian society that struggles with what to do when you remove basically all the struggles of modern life. As in, no money, no chance of death (your mind has back ups and your body can be rebuilt), no struggles, really, of any kind. Each book plays on a different theme, and the first 3 books are easily some of the best sci fi I’ve ever read. Up there with Ender’s Game, Dune, and the classics.

Rachel Morgan / Hollows series, by Kim Harrison

Basically, take Dresden, swap the genders of most of the characters, and replace “wizard” with “witch”. The rules of the universe are different, but the stories are so similar that it almost feels like you’re reading another dresden alternate universe type story. Fun, short, better written than most other cheap urban fantasy novels, quick popcorn reads.

Saxon Stories series, by Bernard Cornwell

Just started this one. Historical fiction based off Danes invading England. Seems pretty solid so far.

Prince of Thorn series

This is an attempt at a Joe Abercrombie (great writer) style anti-hero. He tries really hard to get you to like the protagonist, but the bottom line is that the protagonist is a scumbag, who’s only redeeming qualities aren’t that he actually has redeeming qualities, it’s just that you can see why he’s such a dick because his life is pretty much the worst. Even still, no excuse. Didn’t bother picking up book 2 in this series.

Daylight War, book 3 in the Demon Cycle series by Peter Brett

The first book in this series, The Warded Man was outstanding. Seriously, in the dictionary definition of the word. Nothing else like it out there, super tense, somewhat a mix of horror, survival, and fantasy, all mixed into one. The second and third (Daylight War is the third) kind of were let downs. Both were solid books, but just didn’t capture the magic of the original.

The Passage and The Twelve

An interesting take on apocalypse, survival horror, and that ilk. I don’t want to spoil too much because they’re definitely worth the read, and some of the fun is trying to puzzle out exactly what genre this book fits into and how. Starts a bit slow, but pretty good, overall.

Outliers by Malcolm Gladwell

Gladwell is one of those guys that I keep meaning to read, but I keep getting distracted by big series, and when I finish them, I totally forget about Gladwell. Outliers, though, is a pretty fun book about how success stories, by the time the public hears them, are all pretty much BS, and how the myth of the “self-made man” is often exactly that – a myth. He shows how success is often a crazy combination of luck, opportunity, timing, and drive. Very interesting read.

A few other random others, including:

The Left Overs (interesting), The Divergent Series (super similar to Hunger Games, so much so that I get confused about what happened in which series), the final book in the Fall of the Malazan Empire series (WOW – this series is 10 books of just intense craziness. Definitely not for the faint of heart), The Restraint of Beasts (hilarious), and a couple others.

TV Shows and Series that I’ve caught up, or finally watched, since getting the transplant (I wasn’t watching anything but my regular shows before hand)

Breaking Bad

Honestly, a little disappointing in my book. Slow, not too much happens, difficult to empathize with any of the characters, but the last season was pretty sweet.

Homeland

Awesome. Just start to finish. Totally excited to see the next season.

Mad Men

I hate…pretty much every character on this show. They’re all jerks or assholes for some reason or another. I mean, the show is entertaining, so I keep watching, but I just can’t help but root against everyone. I mean, Don ruins everything that’s ever good in his life. Roger is a walking penis (just about literally). Peter is a scumbag. Peggy is an insensitive jerk, which is doubly offensive, because she was in the position of those she mistreats, and yet, she still mistreats them. Betty Draper is the worst. I just. Ugh. And yet I watch anyways.

Shameless

This is one of those shows that I just can’t explain. There’s not really any plot to the show, though things happen. Horrible shit happens to their family, over and over and over, and it’s just like, Man, when are they going to catch a break. And then the show is like LOOK A BREAK, and you get all happy for everyone and then the show is like NAH HAHA WE WERE JUST KIDDING. I still watch every episode and enjoy them.

House of Lies

I’ll pretty much watch anything with Don Cheadle in it. He’s an awesome actor and his work is always entertaining to me.

Game of Thrones

I read the novels almost in order of release, when they were released. That means I’ve been reading this series for almost 2 full decades ( I was 8, or so, when I started reading them). To see all this stuff come to life, and to have the show be pretty savvy at how they are cut, splice, and merge the various parts of the book to make a compelling, not boring show (parts of the books are definitely boring), all while making the pacing flow better? Just…awesome. Though another show/book series that’s pretty brutal to the characters you like, and pretty nice to the characters you hate. [Though those of us that have read the books and know what's coming know how much of an understatement that is, haha]

Eastbound and Down

I tried to get into this show. I couldn’t. It had it’s moments where it made me chuckle, but for the most part, I just didn’t really enjoy it. And I usually enjoy Danny McBride in whatever he does. Though it would seem supporting roles are better suited for his talents. I might be one of the few that think that, judging by his success, though. I can get behind the lovable idiot. I can get behind the cocky jerk that’s really good at stuff. But incompetent  cocky, asshat? Pass.

Dexter

Second to last season happened in the middle of getting a transplant. There wasn’t really any way to watch the episodes until I got home and could watch the DVR’d episodes my dad had saved me. I thoroughly enjoyed this season, and I’m really looking forward to this summer and watching the final season. Can’t wait to find out how it all ends.

Archer

This is a cartoon that I’ve been meaning to watch for a REAL long time, but never just sat down and did it. Boy am I glad I finally got around to it. If you liked Arrested Development, you would 100% LOVE Archer. The creators have been quoted as saying they wanted to create Arrested Development, but with a Spy Agency instead. It’s dysfunctional, it’s hilarious, and it’s full of ridiculous running jokes that they reference every now and again to reward faithful viewers.

Walking Dead

I watched this while I was recovering from the transplant with Jessie. I think I get more enjoyment out of her shock and horror at the show than I do from the actual show itself. I haven’t seen season 3 yet, but I’m not particularly itching to watch it, mainly because I’ve heard some bad things about how the show proceeds. Ah well, it had potential.

Various Shows on Discovery/History

When I was really struggling (mainly december and most of January) to get going, I couldn’t really focus enough to read, I couldn’t calm my hand tremor enough to play video games, and I couldn’t really sit long enough to browse the internet all day. So, I watched terrible (but somehow good) shows with my Dad. Shows such as Gold Rush, Pawn Stars, Bering Sea Gold, American Pickers, and the one where people bid on abandoned storage containers…Storage Wars, I think it is. Oh, and I can’t forget to include Moonshiners and Amish Mafia.

I think I’ve met my yearly quota of so-bad-its-good-but-still-pretty-bad, though, so I don’t watch them much anymore haha.

On the “To Watch” List:

True Blood and House of Cards are the next two series I’ll be starting. House of Cards is free on netflix, and was recommended by the always awesome Brit, and my wonderful friend Christine actually got me the dvds of True Blood to start.

So there you have it. Those are the things that have kept me entertained since getting cancer. If you want to discuss any of those shows with me, feel free to email, facebook, gchat, text, or whatever else, me, and I’d be delighted.

In case you didn’t know, as an agnostic, I don’t prescribe to any official religion, nor do I feel particularly strongly that there is or is not a God and/or afterlife. While I lean towards there not being a God (at least not a presence described in most religious texts), as agnostic, the line I come down on is simply: I don’t know. I have no idea.

But, for example, I don’t pray. I don’t go to church. I don’t believe, necessarily, in the power of prayer, exactly.

However, I can’t even count how many people have told me that they had me in their thoughts and prayers. And I’m extremely grateful to each and every person that has done so, whether or not they’ve actually told me.

Isn’t that kind of strange? Hypocritical, even?

I don’t really have an answer. Shocking, I know, that an agnostic would think about a spiritual issue, shrug, and say “Hell if I know”. But I think that the way my brain is wired, I’m just appreciative that people care enough to express concern and desire for me to get better.

And truthfully, there really isn’t much that anyone can do for me. My family keeps our kitchen stocked with foods I like. The shows I watch are generally available either on cable, hulu, netflix, or somewhere else online. I already own the video games I want to play. Realistically, the only thing that people can do is to recommend books that they’ve enjoyed lately, or recipes for new and exciting foods that I can cook.

Unless you’re Chef Lenny from one of the country clubs we deal with. Then you make house-made pasta and send it home for me with my Dad. Because you’re just awesome like that.

But not everyone (myself included) can make fresh pasta, and so positive hopes, vibes, and prayers are about the extent of it. And while I just don’t know if prayer does anything, I can’t help but be grateful and thankful that people desire my recovery enough to think of me in such a personal moment. I really don’t know how I could possibly repay all of the good vibes that I’ve gotten, both from long time friends, friends I haven’t spoken to in ages, family members, and strangers.

And here’s another potentially hypocritical point: If you told me I could go back in time, and re-do my transplant, only, without everyone praying for me, I absolutely wouldn’t.

Now…you could say that’s because the transplant process was basically the 48 worst consecutive days in entire life (a life that includes concussions, mono, ligament tears, shoulder separations, multiple occurrences of bronchitis, and all kinds of other minor injuries that I’ve managed to give myself). But that’s not what I mean – I mean, that if I could remain where I’m at right now, but have had nobody praying for me during my transplant, I absolutely wouldn’t change it.

Personally, I rationalize this because I think that living things are more connected than we’re aware of. How, why, and how much we’re connected, I have no idea. But I fully believe that positive energy and good thoughts can help good outcomes occur.

At the same time, though, I have to acknowledge the very real fact that many, many, many cancer patients don’t make it. In fact, fully 25% of people that get a transplant, die. Fully 75% of people in need of a transplant die before a match can be found for them. And I refuse to believe that these people that didn’t make it, didn’t have just as many people praying for their recovery, hoping things would go well. I don’t believe for a second that more than a passing few of these cancer patients ever “gave up”. And I highly doubt that any of these fallen warriors did anything but what all of us have done – listened to their doctors, tried their best to stay positive, and generally just hope for good things to happen.

It’s not like you can do 100 push ups a day and suddenly, you’ll be cancer free. You just have to have faith in your medical team that they know what they’re doing, that they’re giving you the right stuff, and most importantly, that your cancer responds to it.

So for me, while I am grateful to the point of tears for all of the love and support I’ve gotten, it’s become a bit of a pet peeve when people suggest that “keeping positive is half the battle”, or any of the other metaphors associated with beating cancer. Another popular one being that you imagine your whole body as soldiers, and that the cancer is an invading army, and somehow, this visualization helps your body recover.

If it was that simple, do you think anybody would ever die of cancer?

The truth is, cancer is horrible. We don’t know nearly as much about the genetics, mechanisms, or drug interactions as we’d like. Partly because our cancer medical history is so short. Partly because I think doctors are finding out just how different 2 of the “same” cancers can be, depending on the genetics of the individuals that have them. Partly because I think a fairly high percentage of patients choose not to participate in research studies tied  to their disease (I don’t have numbers on that, though). I just know that when my doctors asked my permission to get extra bone marrow every time they do a biopsy, so that it can be submitted and stored in an (anonymous) research lab, my parents didn’t want me to do it, but I immediately said yes. Same for blood draws. Same for post-transplant phone call questionnaires. Same for the packaged sheet of questions I got at day 100, and will get after 6 months, after a year, 2 years, and 5 years. I hope that someday, my results, marrow, and blood samples can help find better, more effective, and less horrendous ways to deal with leukemia.

So the next time you talk to a cancer patient, try not to insinuate that if they don’t stay positive, that they will lose their battle. Express your concern, your sadness, your hope for their recovery. Those are all wonderful things to hear. However, everybody has their own coping mechanisms. And sometimes, they involve not being bright and cheery and happy. Sometimes it involves letting yourself feel sorry for your situation. Because god dammit, cancer really sucks sometimes.

But the truth of cancer is that not all of us make it. The truth is, sometimes it comes back. The truth is, there is a part of my brain that, for the rest of my life, will be a little bit afraid whenever I’m feeling under the weather like I did pre-diagnosis. The truth is, I will live the rest of my (hopefully) long life with the fear that it could come back, or that if I have kids, that I could pass on the genetic mutations that I had that caused the leukemia in the first place.

And the real truth is, that none of us, ever, want the cancer to win.

There are a million reasons why cancer sucks, and I think I’ve illustrated a bunch in previous posts. See; blood in bowel movements, nausea, losing hair, shaking body parts, nausea, risk of dying, being isolated, nausea, needing chemo, restricted diets, losing touch with friends, nausea, losing weight, inability to work out, nausea, oh, and did I mention constant, persistent nausea? Never mind the fact that my regular headaches become migraines thanks to half the medications I’m on having the side effect of “causes headaches”.

One good thing to come from this whole experience, though, is that I went to a neurologist, who confirmed that they are, in fact, migraines (if not cluster head aches, but the medication is the same for either). This means even after I’m done with my cancer meds, I’ll still be able to get Imitrex prescriptions. And let me tell you, if I ever met the guy or gal that invented imitrex, I would give them the BIGGEST hug. Just. The biggest.

But the funny thing about cancer is just what it steals from you that you never really thought of. I mean, there’s the obvious shit.

Cancer has stolen from me just about 120 days spent entirely in a hospital bed, on top of stealing (to date) about 10 months of my life. It has robbed my mom, father, sister and brother in law of a valuable co-worker, making them sacrifice their time and effort to cover my position at work, as well as having to figure out how to get me to my (many) doctor’s appointments, all while STILL having to cover for my absence.

It’s stolen my previous fitness, hard earned over a year spent in the gym, on the road, and in the pool, 3 to 6 times a week. It has robbed me of holidays spent with my *awesome* family. It robbed me of a girlfriend, though to be honest, I’m kind of thankful for that one. The transplant has robbed me of my entire winter snowboarding season, a birthday, a christmas, a new years, and multiple friend’s birthdays.

Now, I don’t want this to seem like I’m depressed or sad or bitter. Cancer has also given me some absolutely amazing gifts. I’ve rekindled friendships long thought lost to time and distance. I’ve gotten closer to my cousins, aunts, and uncles than I think I’ve ever been in my adult life. I’ve been reached out to by individuals, organizations, and strangers, all telling me what an inspiration I am (which is still weird). Cancer has reaffirmed my philosophy on life; we all get one shot at being happy. Life is too damn short to waste it doing things you hate in the hopes that one day you’ll do something you love. My mom and I have had lots of conversations to that effect. As a breast cancer survivor, my mom certainly has an insight into what I’m going through, especially because she had breast cancer a while ago, back when the treatments weren’t nearly so advanced or well understood. And those conversations usually ended with me saying something along the lines of “We’re all going to get some kind of cancer in our life times – people are just living too long now, and basically everything we eat, breath, or are present around causes cancer of some form or another”. Little did I know.

But the biggest thing I feel like cancer has stolen from me is my voice. Not like, I can’t speak because my throat hurt. Although for a while there, after the transplant, speaking was pretty much the last thing on my mind. No, what I mean is, I don’t seem to know how to talk to people anymore. Now, I’ve never been the smoothest guy around, but I’ve always had the gift of being able to relate to and get along with almost anyone. Now, though, I feel like I’m an awkward teenager all over again. Part of it is because my life has been on actual hold since Halloween, and before Halloween, it was on partial hold. At least before the transplant I was still able to bike outside, visit with friends, and hang out with people. Having to go into forced hibernation has cut me from the flow of my friends lives, and its really difficult to try to get back to normal.

Part of the problem, I think, is that nobody wants to complain to me anymore. I’m used to being the guy that people ask for advice, complain to, or just a good shoulder to cry on. Now, though, it’s as if I have the ultimate trump card for excuses, so nobody wants to complain about anything to me. Which is just silly. A friend of mine they other day was complaining that he was feeling like shit, and while I sympathized with him, I couldn’t help but think “HURRAY NORMALCY”.

On top of which, meeting or talking to new people is an awkward position for both of us. I don’t want to just talk about my cancer, but at the same time, that’s basically the only thing that’s been going on in my life for the last 10 months, so unless you play video games, there’s not much else I can bring up. Plus, being 28, I can’t really explain my living situation without bringing up cancer, because lets face it – I, under no circumstances, want to be living at home at this stage in my life. No offense to my parents, who have been ridiculously awesome hosts, and they have a ridiculously awesome house, and I’m basically staying in a 5 star hotel rent-free. But I’m 28, I’m single, and man, does it chafe to not be alone again. In your life plans, you always assume that you move forward. You live at home when you’re young because you’re lucky to be born with parents that care and can afford you. You go to school, you go to college, and you finish. Maybe you live at home for a while so you can get your feet under you, and then you move out. The next step is supposed to be moving in with a significant other, and starting a life or family with them. It’s not supposed to be moving back to your parents house. No matter how cool their house may be.

On top of that, there’s no way to drop “I had leukemia” on a conversation without it being a complete and utter bombshell that kills basically all topics before and after. Either I seem totally flippant about it, or if I’m serious about it, I feel like I’m oversharing. It’s just funny to me that something I’m so open about in the online world causes so many issues when I try to talk (or not talk) about it with people in the “real world”, as it were. I’ve been trying to write a post like this for a while, but that’s the other bitch about cancer. It steals your motivation, your thoughts, and your ability to connect with the emotions necessary to write honestly. Couple that with blinding migraines, and you have a recipe for avoiding the hell out of writing about feelings.

Compounding the issues is that I want to be open and honest about my experiences with cancer. I hope that someone out there learns something from my suffering, or finds comfort in my humor, or anything else. And I have no problem talking about my disease when people ask. But, in case you couldn’t already tell, I have a tendency to speak (at length) about subjects that I’m knowledgeable in. The last year has basically been a crash course in learning about blood cancers, so much so that I’ve heard “you should just go to med school when you’re done with this” more than once.  But when you meet new people, it’s tough to gauge just how much they actually want to hear about your cancer.

Do they really want to hear about all the GI issues you’ve had to deal with for the last 5 months? (probably not)

Do they really want to know how few minorities are in the national bone marrow donor registry? (maybe)

Do they want to know what it’s like to projectile leak from all orifices? (That’s the politest way to say that..but probably not)

When someone asks me about my experiences, I’m pretty much never at a loss for words. But, I’ve completely lost the ability to tell how much they want to know. I feel like the world’s biggest overshare-er.

That’s why I’m thankful that I have such awesome friends. Sunday was the second day I was able to drive myself to a friend’s house, and play crazy awesome board games all day. While they asked for updates, and we talked about my cancer a little, it was more them showing that they cared how I was doing. But at the end of the day, we were all there to play games, and we had a blast.

I’m thankful for all my video game buddies, as they’ve listened to me bitch and moan about the crap I’ve had to tolerate, and they haven’t even complained when I played terribly because I got a migraine in the middle of a game, or that my tremor got worse randomly, or my bowels suddenly decided that they needed a bathroom break RIGHT NOW.

I’m thankful for all my gchat buddies, who keep me entertained throughout the day (Brit, Gabriella, Walter in particular – you guys send me links, articles, and chat with me, keeping the boredom away).

And I’m obviously thankful for my ridiculously awesome nuclear family, fantastic cousins on both sides, amazing aunts and uncles all over the place, friends of friends, strangers, for just being exactly what I needed when I needed it.

As for the future, the next big milestone is 6 Months Post Transplant. At that point, they do an immune function test. My next appointment is on 5/1, but technically, my anniversary is 5/7. I’m hoping they do the immune function test on 5/1, and not on the next visit, which would be 5/22. Anyway, the test will determine which of 3 possible results I can get:

Super-duper-awesome (but least likely): My immune function test comes back great, they heavily reduce my meds, I’m able to move back to my apartment, go back to work, eat restaurant food (although probably take out, not actually staying in a crowded restaurant yet), and maybe even go to the gym.

Pretty gosh darn swell (I’d say like a 40-50% chance): My immune function test comes back within a normal range for 6 months post transplant. They’re able to slightly reduce some of my immune suppression drugs, and I’m able to go back to work, and move back into my apartment. Restricted diet, restricted crowds, and restricted gym still in effect.

Blegh (30%? chance): My tests come back crappy. Either very slight medication reductions, or none at all, and things stay as they are for a bit longer. Not sure how long, or when they would re-test me. While this would be a super bummer, at least the worst case scenario doesn’t really worsen anything.

Additional good news is that none of these cases include worsening of my prognosis. So no matter what the test shows, my bone marrow is still doing great.

CMV Reactivation

One of the major concerns post-transplant is a virus called cytomegalovirus. Something like 80% of the population has it, and in a healthy immune system, it’s not a big deal. Going into the transplant, I was one of the lucky few that was actually CMV negative. This was a major reason why I chose to go with the transplant – not having CMV is hugely positive, as it alone is responsible for about 15% of all deaths after a transplant (one of the leading causes of death, actually, after pneumonia). However, while in the hospital, I was exposed to CMV anti-bodies. Most likely this came through one of the many blood transfusions I received. So, while my doctors kind of rushed past that detail and kind of glossed over things, I’ve been sitting here more or less shitting bricks about it.

Being exposed means that the CMV virus could re-activate. If undetected, it’s basically 100% fatal. There are tests to detect the super early stages of reactivation, but the test is only like 90% accurate.

The good news, though, is that if CMV reactivates, it’s *usually* within the first 3 months. Make it to day 100 without reactivation, and you’re *probably* in the clear. Good news!

Dietary Restrictions

I’m still on diet restrictions. I’m really starting to miss restaurant food, shellfish, and baked goods. I want a lobster roll like very few things I’ve ever wanted in my life, and I’m definitely feeling the urge for a Minetta Tavern Black Label burger. And a Dodd cocktail (a signature drink at Minetta that is no longer on the menu, but involves bourbon, absinthe, peach bitters, and an egg white).

I have no idea when this restriction will get lifted.

What’s Next

The next big milestone is 6 Months post-transplant. At 6 months, I get a full work up again, just like I did pre-transplant. They’ll check my eyes, my mouth, my brain, my chest, my muscles, and my lungs, and see what kind of damage I’ve sustained. Then we can see what I’ll need to do to recover, and whether my goal of an olympic distance triathlon in 2013 is reasonable or not.

Tomorrow I get the results from last week’s bone marrow biopsy, as well as the previous week’s blood test to determine what percent host vs donor I am. The last time we checked, I was 100% little baby boy marrow, but as you get further away from transplant, that can change. The ideal case is to remain 100% baby marrow, but often times, the host marrow recovers just a little bit, which is ok. What we don’t want to see is my old marrow re-growing and coming back full strength. That would be big problems, and would likely mean I’d need another transplant. Which would pretty much be the pits.

Expanding My Cooking Palette

So, I am decidedly not a baker. Generally speaking, when I mess around with dough, Bad Things Happen(tm). I tried to make gnocchi once for a girlfriend, and when I put them in the boiling water, they just disintegrated into mushy paste. It was nasty.

However, my friend Jenna gave me a bagel recipe, and I’ve now made them twice, and both times, they came out just as good as any New York bagel I’ve ever had. Here are some pictures:

Raw dough ready to be baked

Apple-wood smoked bacon, freshly scrambled eggs, cheddar cheese, and a freshly baked bagel. Doesn’t get any better than that.

Additionally, I’ve had a craving for Korean barbeque ever since I saw a restaurant on Diners, Drive Ins, and Dives make a kimchi fried rice and beef burrito. So that’s what I did. I looked up a Korean beef marinade, my sister went to an awesome Korean/Asian supermarket and got Korean spices and beef and stuff, and we made exactly that. I have to say that it got some of the most positive results of anything I’ve ever cooked. I’m going to have to use all the korean spices and pastes that she got in like every meal, because they just have so much flavor its crazy. Here are some pictures!

Meeeeeeaaaaaaaaaaat

Kimchi Fried Rice

For the fried rice, I kind of made it up as I went along. I diced onion and garlic, and sauteed them in a little bit of olive oil, and salt and pepper. Then I added in some sliced kimchi (pre-made) and sauteed that until the kimchi started to get a little crispy. Next up, I added rice that my sister had cooked the day before, and liberally added soy sauce. In a separate pan, I scrambled some eggs with some butter, then folded them into the rice. Lastly, I added some Korean red pepper flakes (different than regular red pepper flakes).

Then I wrapped it all up and put it in my face. It was glorious.

Don’t you want to put this in your face?

Next on the menu, I think I’m going to try to make some chili. I make a great chili currently, but I’ve been debating adding coffee and/or dark chocolate to the recipe to add some extra body and depth. I’ve seen some places on Triple D do one or the other (or both), and I think the flavors would go really well with the current tomato and pepper flavors I currently get. I think I’ll make like 3 batches – one that I know is good with my regular recipe, one with just coffee, because I think that’ll be pretty easy to be good, and one with chocolate and coffee, because I’m not sure if that’ll work out the way I want it to.

Anyways, that’s all for now folks. Hopefully I’ll get some good news tomorrow, and I’ll be able to post a short update about what’s in the immediate future for me. Thanks for reading!

Second, I made it to MSKCC on Friday with a minimum of fuss. We were a little worried about Nemo, but we really just had to deal with some light rain on the way in, and some hail on the way out.

On to the results of the doctor visit!

Blood Test Results, Numbers, and Levels

My blood counts continue to be stellar. Last week, my reticulocyte was very high – 6.5, where the average range is 1-2.5%. This means the baby cords were really working hard on making more red blood cells. Last week, my hemoglobin was hovering in the high 11′s, low 12′s. This week, my hemoglobin was 13.0 – that’s actually at the bottom end of “normal”. Since I never really had a baseline hemoglobin to compare it to, this could actually be what my “normal” was before the leukemia. This is great news – it means my bone marrow is functioning well, despite being on multiple medications that actually suppress your blood counts. As Dr. Barker put it when I was still in the hospital “This baby has balls”.

My white blood cell count continues to bounce around between 5.5 and 6.5, which is again, well within “normal” boundaries. My neutrophil count is generally around 4, which is awesome. If not for the immuno-suppressant drugs that I’m on, these numbers would be enough that I could lead a normal life. Unfortunately, I’m still on my restricted diet and restricted visiting people …er… restrictions until I get off the anti GVHD meds. Which won’t be for a while.

My platelets are continually above 100,000, though they still haven’t reached “normal” levels (which range from 190,000 up to 450,000). The upside here, though, is that since my platelets have stabilized at such a high number, I’ve finally been allowed to take my imitrex and excedrin to deal with my headaches (more on this in a little bit). I can’t even begin to explain how nice it is not to have to try to use Dilaudid to deal with a headache. It’s amazing to me how effective dilaudid is when given IV, versus how absolutely worthless it is in pill form. It gives me a bit of insight on how someone could get hooked on injecting narcotics that I never really thought I’d have. Just some food for thought.

A new number that we’ve started to pay attention to is my IgG level. It stands for immunoglobulins (don’t ask me where the second G comes from). What this number boils down to is that it represents, essentially, your body’s effective immune response. So while having a high neutrophil count is important because it tells you how many cells you have to fight bacteria, your IgG level tells you how effective your body would be at fighting off infections. Before I was discharged, I got an infusion of IV IgG to help my immune system out while I was recovering. Since then, I haven’t needed another injection, and my doctor said that it was one, very surprising that I hadn’t needed one, and two, that it was a very good sign that my bone marrow was able to produce IgG at almost normal levels. Last week, my level was 637, and the normal range starts at 650. This week, it was in the high 500′s, which was still plenty high enough to be considered “good”.

All of this points towards a recovery that is progressing exactly how we want it.

Day 100 and Bone Marrow Biopsy

We asked my doctor about throwing a small party to celebrate reaching day 100 next Friday, and we were slightly approved. Adults only, nobody with any inkling of any kind of sickness, nobody exposed to anybody that’s been sick recently, and everybody must sanitize their hands upon entering, and upon touching surfaces. Also, no hugging or kissing me. And keep the numbers down. So, I can do a small gathering of adult family, which is nice, but I really miss my extended family, and can’t wait until I’m allowed to throw a big party and invite them and all my friends to come hang out. Gotta keep waiting, which I guess I’m getting pretty good at.

I was also expecting to get a bone marrow biopsy on day 100, which would make having people around less fun, but the other good news is that we’re bumping down to ONE hospital visit a week. Very cool! So next week I only have to go in on Wednesday, and my doctor is going to be away at a conference, so she bumped the biopsy to the following Wednesday. That leaves me clear for the day 100 party, though it means I have to wait an extra week to find out the results. Always with the trade offs.

Bumping Down the Meds

This week were able to reduce the steroid medication again, and we bumped down on my marinol (THC). I’d really like to be able to start coming down on some of the shittier meds (namely, the cyclosporine, which is responsible for basically every major side effect that I’ve experienced to date), but it’s nice to start to be able to take fewer pills per day.

Unfortunately, we had to increase my blood pressure medication, as my BP was still in the 140/90 range. Quite a far cry from my normal 100/50.

I’m No Longer A Cyborg!

I am now officially PICC and Hickman Catheter free! No more dangling lines, although this means that every weekly visit will result in a poking. Annoying, considering the amount of blood labs I have to get drawn every visit, but it’s nice that I don’t have to worry about getting things wet when I shower. The patches they gave me never stuck well, and so I was always rushed and paranoid during showers. Now I can take my time, and its funny how that changes the whole experience for the better. To be honest, though, I wasn’t really in a rush to have the hickman out, and I’ll probably miss having it after a month of getting pricked.

The funny thing about medicine, to me, is that despite all the advances we’ve made, sometimes “procedures” are pretty primitive. Removing the catheter was a doctor holding the line, picking up the sutures, then literally just yanking the line right out of my chest. No fancy machine, apparatus, drugs, techniques, nothing. Just a nice solid yank (which kind of felt like someone giving me a half strength punch to the chest) and that was it. It was in the trash before I could even ask to take a picture of it.

Migraines

I’ve been having more and more frequent migraines (3 in 3 weeks is where we’re at currently, and I used to get maybe 3 migraines in an entire year). My doctor suggested I see their neurologist, who approved me for a man-sized dose of imitrex. Previously, I had finally gotten approval from my doctor to take 25mg at the first sign of a migraine, and 25mg more if that wasn’t enough. The neurologist laughed at that dosage, and said that I should just take 100mg at the first sign of a migraine, and potentially an additional 50mg if needed (though he said that if taking 50/50 worked before (which it had, during my stay at Cornell), taking 100 up front should be plenty). So far, I had one migraine since seeing the neurologist, and I stupidly split the dosage into 2 doses of 50. I should have taken his advice and front loaded the 100mg, but instead, I had to suffer a few extra hours. Oh well.

Oh, and an interesting story about insurance. So far, Oxford has been absolutely unbelievable. They’ve covered everything that we needed covered, they haven’t taken extended periods to approve really anything (except when I had a weird pain in my right leg – they wouldn’t approve an MRI until about a week later when the pain had gone away), and we’re talking a total bill well in excess of a million dollars to date. However, trying to fill a prescription for imitrex has been a ridiculous nightmare. My plan covers FOUR pills as a monthly supply. Considering a single migraine requires 2 50mg pills, this could range from plenty of pills, to not nearly enough pills rather easily. So, we had our doctor call the insurance agency up to get what’s called “prior authorization” to approve giving me up to 18 pills at once. However, every time we try to fill the prescription, the pharmacy says they’re only allowed to give me 4 pills at once. So, I have 3 bottles of imitrex, all with 4 pills in them, all at differing doses. I’ve been assured, though, that waiting at my CVS is a bottle with 27 pills, and that should basically last me a year. We’ll see if they actually give me that many pills, or if we just get 4 again.

Insurance is so god damn weird. You’d think that after spending so much on my treatments that they’d just give me whatever the hell pills I need. Hell, my regular drug costs are already totally over $80k…what the hell could the imitrex cost in comparison?

Moving Forward

I asked Dr. Barker when I could go back to work, when I’d likely be able to get back in the gym, and when I could move back to my apartment. She said that we could start talking about moving back into my apartment in the next few weeks. She said the fact that we were even able to have that discussion at day 100(ish) was a really good sign. She said that most of the time, it takes 6 months total (so 3 more months) to get back to work, and that when I went back to work, I’d likely be able to get back into the gym as well. 

The major thing we’re watching for now is a virus called CMV. They check for it every time I go in, and for the next ~4 weeks or so, I’m still at risk for it flaring up. Additionally, the upper gut GVHD that I had that we controlled with the steroid could also flare up, which would make us have to slow down on weaning me off the steroid. Those two things could range from serious to an almost non-issue. If the CMV flares up, they have a pill I can take that should take care of it, but I might have to get a PICC placed to get a medication via IV. So that’s one of the worst case scenarios that could happen in the next few weeks. My doctor was confident, though, that I should be fine, and that if it does flare, that the pill form would be able to take care of it.

The crappy thing is that I went into the transplant CMV negative. About 80% of the American public has been exposed to CMV, and for people with a normally functioning immune system, CMV is basically just there, hanging out, doing nothing. However, when you’re immuno-comprimised, CMV is a big deal. Going into the transplant CMV negative actually significantly improved my prognosis. Unfortunately, while at the hospital, I was exposed to CMV somehow, and became CMV positive (meaning, my body produced CMV anti-bodies, not that I actively got CMV). I’m not entirely clear on how this happened, exactly, but my doctor assured me that it’s okay, and not that big of a deal. I trust her, but I hope I don’t get burned because of it.

What I’m doing with my free time

The other night I spent about 3 hours going through my kindle purchases since 2009, and updating my goodreads profile. Goodreads has a cool feature that lets you view stats like the total number of books you’ve read, and the number of pages those books represented. In 2011, I read 21 books, or about ~12,000 pages. In 2012, I read 52 books, or about ~22,000 pages. One thing is for sure – cancer gave me a lot of free time to read.

I’ve watched all of season 2 and part of season 3 of Shameless. I watched the entirety of the Newsroom (awesome show). I’m starting up on Dr. Who (which is going to be a MAJOR time sink). I’ve gotten sucked into the Alaskan reality shows on discovery (Bering Sea Gold and Gold Rush), sucked into the antique type shows on discovery (Storage Wars, American Pickers, Pawn Stars), and watched so many episodes of Restaurant Impossible and Diners, Drive-Ins and Dives that I’m actually starting to see repeats in the re-runs.

I’ve also been cooking for my family a lot more frequently, and I’ve been experimenting with making doughs. Last weekend, my sister and I made cinnamon buns (we got the wrong kind of yeast and had to make some emergency adjustments, but the end results were pretty solid), and this weekend, I made everything bagels from scratch. The bagels were a resounding success, and they were surprisingly easy to do. Considering I haven’t been able to have a bagel (one of my favorite breakfast foods ever) since Halloween, I was a pretty happy camper this morning. Take a gander at the finished product:

It was well worth the wait. It’s also probably the first time I’ve ever baked something that the first attempt didn’t end in misery, nor would I have really changed anything in the process. A big thanks goes out to my friend Jenna for the inspiration and the recipe.

Oh, and I made the wings again, and this time, they came out even better than my first attempt. The key is to keep your initial oil temp below 250 degrees, and to watch the wings really closely. As soon as the meat starts to pull away from the bones, you pull them out of the initial low-temp fry, and let them cool on a wire rack. Then, the second key, let the oil re-heat between batches. The first time, I didn’t let my oil get above 400 degrees before I dropped more wings into it, and so the initial batch was perfectly crispy, but secondary batches were sightly less perfect. My brother in law also brought a locally bottled extra hot buffalo sauce along, and that really made a difference in how delicious the wings came out. Unfortunately, I have no pictures of the wings, as they were devoured pretty much instantaneously from being batch cooked.

Next on the list;

I started the Dark Tower series by Stephen King. It’s one of the classic fantasy series that everyone says you have to read, and I just have never gotten into it. I’ve heard that the middle gets really wonky (as it was written after a horrific motorcycle accident that almost claimed his life), but that the end makes up for it. It’s 7 books long, so we’ll see what I think at the end. I like that the series is already completed, because I have about 5 series that I’m reading that I have to wait for books for years at a time. I don’t need more of those.

I finally remembered that I purchased a year’s subscription to Top Chef University, an online video course that teaches you everything from kitchen basics (like how to hone your knife) up to how you want to plate a fish course vs plating pastas, and everything in between. So far, I haven’t really learned anything new, but I am learning fancy french words for things I was already doing. Like when I add tomato paste to my onion/garlic/pepper mixture when I make chili, what I do is called “concasse”, where you let it cook out with the veggies. I also learned that most tomato sauces have celery in them, which is anathema to me, as my Dad’s gravy has no celery (or carrots), and therefore, these people are all wrong.

Get back on my bike. That’s next on the list of things to find motivation for, and while I’m struggling, I think once I set the thing up on the trainer, I’ll start to use it regularly. Have to get ready for when the season warms up and I can ride with my sister and brother in law, who will both be worlds better than when we last road, while I’ll be worlds worse. They’re training for St. Anthony’s triathlon in April, while I’ve been sitting on my ass, eating like a horse. Oh well. I’ve made this journey from out of shape to in shape twice before. Third time’s the charm, and hopefully, nothing will get in the way of me attempting an olympic distance triathlon in the fall. I might have to settle for a sprint distance, but we’ll see how training goes. I might also have to settle for a cycle-only event, as I was a terrible swimmer even when the rest of me was in great shape. I have no idea if I have the time to be able to get into swimming shape for a mile swim. We’ll see how things go!

Down to 2

For the last 2 weeks, I’ve only had to go into the city twice a week, instead of three times a week. So that’s made it easier on my parents and I, which is good news. Additionally, the last two times I went, I didn’t need to get any transfusions of any kind. That’s another good sign. 2 weeks ago Dr. Barker reduced my cyclosporine dose, which is the anti-GVHD medication that runs havoc on your kidneys. Well, with the reduced dosage, my kidneys are able to process more magnesium, which keeps my electrolyte levels more towards normal, which means, no IV drips for me. Yay! I’ve also not needed hydration since starting the budesenide (steroid), so all in all, our visits have gone from all day affairs (leave the house around 7:45am, get back around 2), to slightly shorter, morning affairs (getting home around noon or slightly before). 

All of this is pointing me towards thinking that I might be allowed to move back to my own apartment soon. I’ll miss Che Lanza and it’s 5 star accommodations, but there’s just nothing like having your own space. No matter how comfy you are in a foreign spot…it’s just not yours, and I think that’s a significant thing. Also, I have to say, having your entire living space be one floor, and having everything near each other, is something that I definitely miss. Two  massive flights of stairs between the kitchen and my room? Less than fun. At least now I’m strong enough that I don’t feel like I’m going to fall over the railing when I go up the stairs.

How am I feeling?

The most frequent question I get, for obvious reasons. So far, I’m feeling as well as one could, given the 37 daily pills, assorted random side effects from said pills, and general lack of activity for the last 2 and a half months. The big news is that my CBC numbers are all finally high enough that my doctor approved Excedrin as a pill I can take for headaches now, and she also approved Imitrex for migraines. Good thing, too, because I got a monster migraine last night, and had to do the full dosage of Imitrex (which is a drug you absolutely do NOT putz around with). 

Other than the headaches, I feel good. I can walk around fine, my joints are all mobile (this is a concern, as GVH often targets joints), I haven’t gotten any rashes or infections. I think the biggest issue I have is dry skin, which I normally get every winter, but apparently just about every drug I’m on exacerbates the issue. Could be worse.

What’s coming up?

From what I can tell, day 100 is when some/most/a couple of my restrictions will come down. I think that’s when they will really start to taper off the anti-GVHD meds (which are the ones that are immuno-suppressant, which is why I can’t be around big groups of people). As the title of the post suggests, I’m on day 84, so a few more weeks and maybe my life will start normalizing. I see Dr. Barker this Friday, and I’m going to ask when I can expect to get back in the gym, and when I can start hanging out. And most importantly, when the hell I can eat at a restaurant again. It’s been fun cooking with my mom, but man, it’s a lot of work. And I’m not even supposed to clean, so I don’t even do half the work.

On February 8th, my hiccman comes out. I’m not as excited for it being removed as I was for my PICC coming out, because honestly, I don’t really mind this thing. I only have to flush it twice a week (which is really once a week, because the visiting nurse that changes the dressing once a week flushes them for me). I don’t notice it if I have more than a tshirt on. It doesn’t really get in the way of anything. I only really notice it when I’m trying to sleep, and even then, it’s not that big a deal. But it will mean showering will be much easier, and I might even be able to convince myself to restart all my daily routines and try to get back into a normal rhythm. 

Random Tidbits

I made buffalo wings the other day, and I learned how to make them so that the skin is like extra ridiculously crunchity and crispy. The secret is that you cook them in low temperature oil first (250 degrees, for 10-15 minutes, depending on the size). Remove them from the oil, let them cool. You can even freeze them at this stage, so you can pre-prep them days or weeks in advance. Then, when you’re ready to serve, pop them in 400 degree oil just until they brown up, and you have perfectly cooked, amazingly crunchy wings. Toss them in your favorite hot sauce and you’re done. 

I’ve watched a ton of shows and read a ton of books, but I lately got on a kick of Newsroom on HBO, and I have to say, it was pretty good. They weave in real stories, and show how the media isn’t helping us become informed citizens. It’s not thrilling like Dexter, but it’s an interesting show that anyone interested in politics or broadcasting should check out. The acting is superb, too.

And that’s about it! Until next time, I’ll be sitting around, waiting in my parents’ house, reading and watching TV. 

But, we have a ton of stuff to cover. Enough excuse making. On to the meat!

HOME

In case you haven’t spoken to me in the interim, I did in fact make it home, with plenty of time to spare for Christmas. Although I think my family and I are going to do a second Christmas or something, because everybody was swamped for basically all of November and December. I managed to get my mom a kindle (who, despite protesting “I like to turn the pages” before receiving it, is loving it. Stop waiting people, and get one). My sister got me a new phone (Galaxy Note 2 – it’s comically large and I kinda love it).

But yes, I am home at my parents house if you want to swing by and visit, I’m home every afternoon and evening. I’m also on house arrest. So unfortunately, I can’t visit anybody yet. In the words of my wonderful doctor: “If you’re not here [at MSKCC], you’re at your parents’ house. Understood?”

Living with your parents after living on your own is a rough transition. Luckily I have amazing parents. After some initial rough patches, I think we’ve settled into a rhythm that works. It also doesn’t hurt that I’m finally starting to feel a little bit more normal, but more on that later.

TRANSPLANT PROGRESS

So, since we were here last, lots has happened with my transplant. I.e., nothing, pretty much. I’ve been going to MSKCC 3 times a week in the morning to get an infusion of magnesium and some saline, and just get all my drug levels checked. I need the magnesium because one of my super important pills (Cyclosporine  - it prevents denial of the graft and graft denial of me) ends up making my liver process less magnesium than it would otherwise, so I have to take 9 magnesium pills a day, and go back 3 days a week to get a stupid infusion.

That’s basically been it. Felt crappy and nauseous all the time, kept having to struggle to get to MSKCC early in the morning, and was generally not in a good mood to begin with.

Oh, funny story. Ya know how I’m supposed to avoid sick people, and crowds, and wear a mask and such? Guess who exposed me to this flupocalypse that’s destroying NYC now. Dr. Barker. As in. The head of the transplant department, Doctor who should PROBABLY know better. Oh well. I got put on an emergency course of tamiflu just in case. That drug, on top of all my others, gave me a really solidly crappy 10 days. But, no flu! So that’s good.

Another interesting story; Cyclosporine (which, if you remember, is the drug that made me sickest in IV form at the hospital) also has the side effect of causing facial hair to grow. So now I have a pseudo mustache/soul patch thing going on. And my regular hair is starting to grow back already…it wasn’t supposed to start for 3 months, so that’s about a month ahead of schedule. I’ll take it. Not having hair means I have to wear hats, and I hate wearing hats. Oh, and that facial hair grows on females that take the drug too. So, it could be worse for me.

So that was it. Dr. Barker just got back this week (obviously she couldn’t come back to MSKCC until she was cleared by a medical team), and we made some changes. She suspects that I have a touch of upper gut GVHD. That would explain why I’m still having trouble eating and drinking enough, and why I basically was perma-nauseous all day. So they did an endoscopy on me on Thursday, which I’ll talk about, and put me on a light steroid. It already has me feeling better. In fact, it’s probably responsible for this post getting put up.

Other than that, no news to report on the transplant end. It’s pretty much progressing as expected, no real curve balls.

I still have my Hiccman catheter. I’m really looking forward to when they rip this thing out of me. The sutures that are holding it in place are starting to itch something fierce.

Endoscopy

Finally, I got an anesthesiologist that didn’t play around. They wheeled me in, put me straight onto a mask of oxygen, and had me taking big breaths while they put some heaven into my IV. Last thing I remember is the nurse asking me to put my hand at my side (it was on my stomach), and then I was back in my room, waking up. Throat was scratchy, for sure, but otherwise, I was pretty ok. I wouldn’t be afraid to do this procedure again. Which is a good thing, because I almost certainly will be needing to do it again later, to confirm that the GVHD is cleared up or not.

Moving Forward, and explaining the title

So, more “hurry up and wait” for me. I have to stay with my parents until I’m well enough to go take care of myself again. So, we sit around, hope that this upper gut GVH is the only set of symptoms I get, and try to make it to Day 100. That’s the big day. The first big milestone. I don’t really know why, but it’s the cut off for acute GVHD. Anything after 100 days is considered chronic. So that’s the time when you can *start* tapering off medications you don’t need anymore.

As for the title, I just feel like everyone was just so happy that I was going home, but all I could think about was “I wonder when and how much GVHD I’m going to get”. Like, the hospital portion of a stem cell transplant is certainly no joke, and nothing to just gloss over, but for me, I just felt that the hospital stuff I could deal with. You know you’re sick, you feel sick, and there are people there to help you feel less sick. I don’t know. The hospital all makes sense, after a fashion, in my brain.

It’s being on house arrest. Having people in your space 24/7. Being back in a familiar setting, but not even being able to do simple things, like use the same butter as the rest of the family. It’s familiar, but foreign. I’m not supposed to drink from the water cooler in the house because the spigots harbor bacteria.

That, coupled with the fact that I’m more afraid of severe GVHD than I am of catching some sort of virus or bacteria from the world, means that this is the period that I feared most before the transplant even started. Sitting. Waiting. Not knowing if something is a new symptom that I should report, or its just my body still trying to cope with the torture of the last few months. It’s not a good time.

So for me, while getting home was great, and I’m thrilled to be out of the hospital, I’m not doing any victory dances yet. I’m on the hook for this whole “leukemia” nonsense for a good amount of time yet. The crazy part? I technically don’t have cancer anymore. I can’t accurately describe myself as having AML, because technically, I don’t have it anymore. This whole experience is just surreal.

Anyway, 1300+ words is enough of an update, I think, so I’ll say my farewell here. And to all of you contacting me, via text, email, facebook, whatever, know that you put a smile on my face every time. I’m forever grateful to my family and friends for being the best support group I could ask for.

Then Friday, it hopped up to 0.9. Now we’re getting somewhere. Saturday, it jumped all the way up to 1.4.

Today? 2.0.

Whaaaaaaat. Go baby marrow gooooooooooooooo!

On top of that, I’ve started to eat solid foods (granted, solely food cooked for my by my wonderful sister and mother), and the hope is that I can finally start thinking about getting out of here.

The next step is showing that I can keep enough physical calories down to not jeopardize all the oral medication I’ll have to take home with me. Then they start switching all the IV medications to pill form. Then I show I can drink enough liquid to not get dehydrated. And then, I might get to go home. WOOOOOOO.

I hoping for before christmas.

That’s all I got for now. Hope everyone is doing well out there!