Day 100 Update, Expanding my cooking palette, What’s Next

Howdy folks! So, as my facebook followers know, I’m officially passed the Day 100 milestone. While growing research is showing that this milestone is somewhat less important than previously thought, it’s a Big Deal(tm) nonetheless. The main things:

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:

Image

Raw dough ready to be baked

Image

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!

2013-02-26 19.35.56

Meeeeeeaaaaaaaaaaat

Kimchi Fried Rice

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.

2013-02-26 20.10.52

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!

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18 comments

  1. Elizabeth Breslin · · Reply

    Another great post, and it’s great that they just keep on coming!!

  2. Margaret Mateyaschuk · · Reply

    Ok – I’m reading your blog – I’m up – I’m down – Good News – Possible Bad News -Back to Good News. Good thing I have a strong heart! In the end sounds like all is going in the right direction. xxx
    As far as your pick of foods – Boy are you different from your Cousins! I get emails from Jennifer with what not to eat – I’m sure she will write and comment on your – diet??? – LOL
    In any case – loved seeing Howdy again – sounds like the old you -even if you have new marrow. xxx

    1. Thanks God Mom 🙂

  3. OK first of all the minute and I really mean MINUTE your allowed ANYONE who can NEEDS to MEET YOU AT THIS PLACE FOR A BURGER!!!! rEALLY!!!!! Even if it’s just me and you!!! I’m jones-ing for one!!!! This post was what Aunt Margie said up and down…I am focusing on all the great!!!! how did it go today??? I love you!!!!!! xxxxxxxooooooo

  4. wow that made me crazy hungry… doesn’t help that I’m waiting on dinner to be ready.. all of that looks delicious.
    not cool that the dr’s sorta just threw the cmv thing around like its nothing.. that would make a lot of people shit a couple bricks :P. But congrats on the 100 day milestone 🙂 regardless of the medical significance, its probably a good time to celebrate all your success, too. 🙂 Cant wait to hear more on what you’re up to and how you’re doing.

  5. Congratulations on making it beyond the 100 day marker!! I don’t care what research says- it’s a huge milestone. Hell- every day I wake up and can function (kind of) like a normal human being is a milestone. You should be very excited. I also hope to read good news come your 6 month post-transplant work up.

    And can I PLEASE have your bagel recipe? They look amazing and it might make my life complete.

    1. Glad you enjoyed 🙂

  6. So how are you doing? Looks like you’re cooking as much as I am painting. Are you sprung from the house yet?

    1. Nope, still on house arrest. I’m hoping that my next visit (on 5/1) will count as my 6 month visit (even though my 6 month anniversary is technically on 5/7, but seeing as my follow up visit after 5/1 is 5/22…really hoping they do the 6 month stuff early).

      If they count it as such, they’ll test my immune function, and if I get positive results from that, I could be going back to work, moving back to my apartment, getting back into the gym, and maybe even getting some of my social life back. One can hope!

  7. Melissa · · Reply

    Hey,

    You may or may not remember me, but I am definitely that stranger who left you a novel about autism a little while back. I hope you are doing well. I like your choice of food, by the way. Out of pure curiosity I typed Minetta tavern into google. It just happens that it is not too far from my school. I am near union square for graduate school 3 times a week. I am actually just curious if it is worth taking the walk there one day after class to go try something, since it seems to me that it is probably worth it. I’m not sure why this comment seems odd to me, but oh well. I would offer to buy you dinner, but it doesn’t seem that you’re allowed and some people are weird about meeting strangers. Not that that didn’t just make my comment more odd. Anyway, have a good day. I hope you get to eat a burger soon.

    1. Hey Melissa!
      I do remember! And if you get a chance to go to Minetta, it’s 100% worth your time. Always try out one of their appetizer specials. I’ve tried all kinds of stuff there that I wouldn’t ever order any where else, and I’ve always been shocked at how good its been.

      Once I get approved to go out to restaurants, you better believe I’ll take you up on your offer. I intent to basically live at Minetta until I try everything on their menu. Every time I’ve gone in the past, I’ve always gotten the Black Label burger – it really is that good. But for the longest time, I wanted to try the other items, I just never could convince myself to not get the black label.

      Well! Now, I’m going to MAKE DAMN WELL SURE I try all those other menu items, and plus, I’ve talked about this burger so much that I have lines and lines of friends, family, and strangers to bring as well.

  8. Melissa · · Reply

    I will definitely try it out one of these nights. I will even order that burger, just because I am really curious at this point. It sounds like you have a busy eating schedule ahead of you, which is always a good thing. I will try to keep tabs on the site, and when you are able to eat out again, we should definitely arrange a minetta get-together. I would offer to bring you one, but I am assuming that is not allowed. Anyway, nice new post. I usually don’t know what to say to people in general, and I think it’s funny that you are only suddenly having this problem. I definitely am less socially awkward than I used to be, but definitely still strange sometimes. I think once you are allowed to go out again and be social it will all come back to you. And strangely enough, I am starting to understand how much it sucks to have a lack of a social life because I recently moved to Westchester from Long Island for school, and it is so horrible not knowing anyone here. I literally have no social life anymore. It is not too fun. Anyway, take care. I hope to talk to you soon.

    1. Any time you switch areas, starting a whole new social circle is just the worst. Though I guess Long Island isn’t so far away that you can’t still see your Westchester crew when you’re free.

      1. Melissa · ·

        True. Maybe over the summer when school is done for the semester I will have more time to visit Long Island. How do you even make new friends? I am totally clueless in that department. I’ll figure it out someday I guess.

  9. Melissa · · Reply

    Sorry to completely bombard you with posts, I hope it’s not bothering you. Earlier I was thinking about this all natural pill that I take sometimes, and I’m not necessarily suggesting that you take it on top of the multitude of other pills you take, but I just thought you might find it interesting. It’s called Olive leaf extract, It basically boosts your immune system. It has a whole bunch of uses like bladder infections, antibiotic, antiviral, regulating the blood in the brain, etc (It even works as an antianxiety med). It works way better than most prescriptions that I’ve ever been given. I can actually prove that, but I’m not going to get into that here. Anyway, if you ever need a good immune system booster in the future and you’re not taking a ton of other meds (because there haven’t been very many studies done on it yet, it’s relatively new- although there is a list of drug interactions) you should check it out. “The tree of life”. Ironic. For some reason it reminded me of you, and I feel the need to tell everyone I know about it because it works so well.

    1. No worries about bombarding me. As for the pill, my doctors have me currently off anything that’s not on my approved medication list, including fish oil and any other natural remedies. The thought is, while they could do some good, they could also do some bad. They just don’t know how the drug or herb will interact with the rest of the medication. So, until I’m off some of the more serious drugs, they’d rather me avoid supplements and such.

      Once I’m off, though, I’ll definitely look into it.

      1. Melissa · ·

        Awesome. It’s definitely an interesting pill, to say the least. And that makes sense about the interactions. Being extra careful is definitely the smart choice.

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