Monday, September 26, 2011

Selfless or selfish?

Tomorrow, my mom and I board a plane headed for Denver, and on Wednesday I will have my physical. The last time I flew was in 2006, when I went by myself to New Jersey for training related to my job. It was, all in all, a good experience, and I don't expect this experience to be any different. However, I'm still nervous. Not really about the flying or the physical, but more about the logistics. What to pack and not pack. Making sure I make my appointment on time. Those sorts of things.

Tonight, we will have a information session via phone with the donor representative from Be The Match. She'll give me lots of information, and I'll probably have lots of questions. Most of the questions I can answer on my own with the help of Google, but I'm looking forward to talking to the rep anyway.

I'm a little out of sorts today. Not cranky or angry or anything. Here's the deal, and I don't know quite how to explain it, but I'll give it a go.

(Remember when I told you I would be really honest about this process?)

When I first found out I was a possible match, I was excited to tell people, to get people to join the registry. As the donation gets closer, I'm finding it harder to bring it up with people. I still want to tell people about it - very much so - but at the same time, I feel like they might think I'm looking for sympathy, or complements, or that I'm being selfish even bringing it up. I know this sounds crazy, but that's what's going on with me today. I haven't had a negative experience when talking to people - quite the opposite, really - everyone who has talked to me about it is so incredibly nice and complementary and encouraging and positive. And maybe that's the thing. From my perspective, it feels like I'm just doing what I'm supposed to do. It's strange to reconcile my sense of duty in this situation with everyone else's perception of selflessness, generosity and whatnot. I don't want to come across as preachy about bone marrow donation, and I don't want to come across as unappreciative of or ungrateful for support and encouragement - I need and welcome all of it. But the two sides are tugging within me today, and am out of sorts.

So what I have to work on is just being in the moment with this. Letting the good will and positive encouragement from others wash over me, take it in - I am doing a good thing, and it's okay to acknowledge that.

Do you know what I mean? Or am I really just being overly... weird ... on this one?

(this is a cross-post with my not-so-foodie site, Sit. Stay. Good Blog. It’s important, so I want as many people to learn about bone marrow donation as possible.)

Saturday, September 24, 2011

Saturday, September 24th.

I've gotten a couple of questions about how much it will cost me to go to Denver for the donation. The answer: nothing.

The National Marrow Donation Program pays all travel expenses for me and a companion including airfare, mileage, hotel, meals and even dog boarding for Finnie. They book all the plane tickets and hotels, and I keep my receipts for the rest. I don't have to pay for one thing. Pretty cool, huh?

Today was just beautiful - sunny, 68 degrees, just a hint of autumn in the air. We don't get many of these days around here - it's either too hot or too cold or too wet - so we spent lots of time outside and doing errands around town. When we got back this afternoon, a large envelope from Be The Match was waiting on the porch. Inside was a book about the donation process, along with a stack of forms for me to read and sign.

I spent about an hour this evening reading through everything and signing where necessary. The booklet included was really informative and well done. You can read it in PDF form here: You're A Match PDF

I learned quite a bit while reading through the materials. First, I can exchange letters and small gifts with the patient, but under strict anonymity. I can tell her generally my occupation, but not where I work, for example. I can knit her a hat, but can't send her a bag of Roasterie coffee, as it's too local.

This is, of course, assuming that all goes well for her. Because another thing I read was that I have to be prepared for her to not survive. I hate this thought, but it's a very real possibility. Non-Hodgkin's lymphoma is really awful, and the older the patient is, the more difficult recovery becomes. So while I am sending good thoughts into the universe for the best possible outcome, I have to be prepared for the worst - if the worst happens, I've done all I can do.

An emotional roller coaster, I tell you.

Friday, September 23, 2011

Friday, September 23rd.

So moments after I posted that I am going to be a bone marrow donor, I got a call from Paulette in Omaha (from Be The Match) with some dates.

Next Tuesday I will fly to Denver with my mom and will have a physical on Wednesday. We'll fly home Wednesday evening.

I'm tentatively scheduled to do my donation on Tuesday, October 18th, so Frank and I will probably drive to Denver the weekend prior and drive back later that week.

Those two paragraphs are so small considering what's contained within them.

I promised to tell you about the donation process itself. Be The Match has a lot of information on the subject here, but I'll give you the 10-cent tour.

There are two types of donation: Bone marrow donation and peripheral blood stem cell (PBSC) donation. The patient's doctor decides which donation method is best for the patient.

The type of donation most people have heard of is the bone marrow donation. That's the one where donors are knocked out while doctors use a needle to withdraw liquid marrow from the donor's pelvic bone. This method is kind of painful and has a bit of a recovery period for the donor.

The most popular type of donation (about 80% of donations), however, and the type I am doing is PBSC donation. This requires that for 5 mornings leading up to donation, I get injections of a drug called filgrastim to increase the number of blood-forming cells in my bloodstream. On the fifth day, my blood will be removed through a needle in one arm, passed through a machine that separates out the blood-forming cells, and returned to my body through the other arm. It's a similar process to donating blood plasma.

The primary side effect of PBSC donation, according to the online reading I've done, is that during the 5 days of injections my bones will ache, like when you have the flu. Most people report that they have back aches, or headaches, but that these are eased by taking Tylenol.

There aren't any long-term effects of PBSC donation that I am aware of, and most people report feeling 100% back to normal in less than a week after donation.

That's the black-and-white. The grey is the part where I can read all of this stuff, and sort of be aware of what's going to happen, but still not have a clue, really. I won't know until I'm going through it. Most of the accounts of donation that I've read are almost comical in their lack of information about the reality of donation - "It doesn't hurt AT ALL!!" "It was a tiny bit uncomfortable, but no worse than a little headache..." "Shots are no picnic, but they weren't that bad." I'm trying to read between the lines and form an honest picture, but it's not easy.

That's why I'll really try to be honest here as I recount my experience.

Starting with this: I'm nervous. I don't care for shots. I'm kind of afraid of the actual donation process where they take out my blood and put it back in. What if someone trips over a hose and rips out my veins and then my blood gets spurted all over everywhere but inside my body where it belongs? The hotel could have bedbugs. The plane on the way to Denver could crash. The plane on the way back from Denver could crash. The cars to and from the airport could crash. What if a freak snowstorm hits Denver and we're trapped there and can't get back home for days and days? My cats are going to miss me when I'm not there. My bones are going to ache and its going to feel like I have the flu and I hate having the flu. What if my bones hurt so much I can't walk? I could be allergic to the filgrastim and go into anaphylactic shock and die when I get my first injection. Remember in my last post where I said I don't dwell on things I can't control? That's still true - I won't dwell on this stuff - but there's certainly no shame in giving my fears a name, is there?

And then there's this: All of my fears, my concerns, my questions, my possible pain and discomfort - all of this is nothing compared to what a 58-year old woman with non-Hodgkin's lymphoma is going through. For four to ten days prior to me donating, she will be getting high doses of chemotherapy and possibly radiation to destroy the diseased cells in her body. The treatment also destroys the blood-forming cells in her bone marrow to make room for the ones I'll donate, and destroys her immune system so it can't attack my transplanted cells. This means that once she starts this regimen, if she doesn't get a transplant, she will probably die.

I'll get some bone aches that can be treated with Tylenol. She'll get her system wiped to the point of no return.

Which brings me to another confession: I have about fifty thousand emotions going through me at once. I'm legitimately scared, nervous, excited, proud, humbled, thrilled, sad, happy, worried, concerned, anxious and lots of other feelings that I can't find names for all at the same time. Sometimes, I feel like I want to cry because I'm overwhelmed at the idea that I am going to possibly save someone with a relatively small sacrifice of time and comfort. I want everyone I know to join the Be The Match registry, and start to feel holier-than-thou about it and think disparagingly about those who haven't joined. Then I snap back to reality and think of all the reasons someone might not want to or be able to donate and feel guilty for thinking those disparaging thoughts I thought moments ago. I'm a basket case, I tell ya. Up, down, happy, sad, bouncy, flouncy, pouncy, wouncy, fun fun fun fun fun!

That's out of my system... for now.

Happy Friday! :)

Stand and deliver.

There is a poem by Jane Kenyon that returns to me when things are going well. I've posted it before, but it warrants posting again:
Otherwise by Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

I've been fortunate thus far in my life to not know too much of the otherwise. There have been times, yes, but all in all, I consider myself very lucky to not know much of the kind of pain or suffering or despair or sadness that many people experience all the time. I'm loved, I'm happy, and I'm healthy. Sort of the good-stuff trifecta, you might say.

That last one - healthy - is something I work at. I eat  well, I exercise regularly, I don't overindulge in anything. But for all my efforts, there are things that come along in life that don't give a you-know-what if you're health-conscious or not. These are things I can't control, and I'm really good at not dwelling on things I can't control. What's the point, right? It's not that I'm not scared of these things, it's that I don't put energy in being scared of these things. I don't think about them. Stuff happens, and you deal with after effects. I am good at moving on and through to the after.

I'm loved, I'm happy and I'm healthy, and because of some cosmic craps-shoot that has me in the right place at the right time, I am (probably) going to be a bone marrow donor for an anonymous stranger.

In the spring of 2009, Frank told me that he heard about this organization called Be The Match, which is a bone-marrow donor registry. Be The Match would send each of us a kit that contained everything necessary to gather a DNA tissue sample and send it back to Be The Match for inclusion in the registry. Our kits came a few weeks after we requested them, containing a Q-Tip, a vial and some forms for us to fill out.

Collection of the DNA sample was as easy as could be - I  just rubbed the Q-Tip on the inside of my cheek, put the Q-Tip in the vial and mailed it back in the pre-paid-and-addressed envelope. A few weeks later, I got an email saying they received my sample and I was now included in the registry. Then I promptly forgot all about it.

Until Tuesday, August 16th, 2011.

On that day, I received a call on my cell phone from a woman who identified herself as Caree from Be The Match. She asked if I remembered joining the registry, (I did). She then told me that I was identified as a potential match for a 58-year old woman with non-Hodgkin's lymphoma, and asked if I was still interested in donating. I said I was, so Caree told me briefly about the types of donation, the method of transplant they want to use for this patient, and other information about the donation process. Caree said that this was very early in the process, so they needed to run another test on my cheek swab, and I needed to fill out a health questionnaire that they sent to me via email. The information all came at me very fast, and was too much to absorb at once. All I could really remember was a "58-year old woman with non-Hodgkin's lymphoma" needed a transplant, I was a potential match, and I had to wait to find out if I was the best match possible.

For the next couple of weeks, I spent a great deal of time researching the bone marrow donation process, learning all I could about the procedure, the experiences of the donors, etc. At the same time, I learned that at this point in the process, it was unlikely that I would be the best match - there are typically several potential candidates for donation. It was most likely that I would be cut from the field as closer matches were identified.

But on Thursday, September 1st, I got another call from Caree. This time she told me I was a strong match for the patient, but they needed a blood sample to be sure. She asked that I give a sample the following Tuesday, and set up an appointment at a local lab for early Tuesday morning. She emailed me a consent form that I had to fill out and fax back to her, and asked that I take their health assessment survey again to make sure nothing had changed. I asked Caree what was the likelihood of me being the best possible match after the blood tests, and she told me that it was about 50/50.

I was no longer dealing with exclusively with forms and Q-Tips. We were about talking needles and blood and things started to get a little more real than before.

I should pause at this point in my story to tell you that I haven't had good experiences with blood draws. Typically, the technician has to stab me multiple times in multiple places before barely a vial of blood emerges from my sad little veins. I've never donated blood for this reason. Even checking my cholesterol using the finger-prick method is a painful, time-wasting chore. So I was not excited about the thought of getting several vials of blood drawn at all. But the last time I had to give a blood sample, the technician told me that drinking lots of water before the draw helps make the draw easier. I would take this advice to heart (and veins).



I drank about a gallon of water the day before my appointment with the lab. When I got to the lab, I told them I was a potential bone marrow donor and they were ready for my arrival. They had a box from Be The Match there with vials for my blood samples and forms for the lab to process. While waiting for my turn with the technician,



You know what? It totally worked! I spent about 5 minutes with the technician, who managed in that time to draw 5 vials of blood from me with one try. It was incredible. I've never had that sort of experience before. Not even a tiny bruise.

The next day, I got an email from Caree who told me we were in the "hurry up and wait" phase of the process. It usually takes about a month from the time of the blood draw until the right donor is identified, and Caree told me I could contact her for updates around that time if they hadn't contacted me yet.

I didn't have to wait that long.

On Wednesday, September 21st I received a call from Paulette, who works with Be The Match out of Omaha. Paulette told me that I was the best possible match for the patient, and that the doctor wants to move rather fast on this one.

I'll go into more details in future posts, but the short version of a long story is that there are two types of bone marrow donation and the type they need me to do can't be done in Kansas City. I have to travel to one of a few cities, and because we fell in love with the mountains in August, we chose to go to Denver.

I'll know more on Monday when I have an informational call with Paulette to go over all the details, but I will have to go to Denver once for a physical and once for my donation. Be The Match will cover all travel expenses for me and a companion, so we don't have to worry about any of that.

It's going to be an interesting October. All I get to know about the patient is age, gender and disease. 58-year old woman with non-Hodgkin's lymphoma. She's the same age as my mom. There are no choices to be made. I have no doubt about what I am going to do, because my mom taught me to do the right thing.

Because this process has sort of been an emotional roller coaster, I want to write about it and share it with all of you. I'll give more details about the donation process and share some facts about donation that surprised me and I know will surprise you, too. I'll be as honest as possible, and if it hurts, I'll say so.

I hope you'll follow my story as it unfolds, and that maybe it will inspire you to join the Be The Match registry, too.

Here we go... I get to affect someone's otherwise.

That's entertainment.

Since we don't have cable, we watch a lot of movies and older or less-mainstream television series. Over the last few months, we've watched several of each, and I've meant to write about them here but then life happens and I forget.

Now I'm playing catch-up.

As far as television series go, our favorites in recent months have been The Mighty Boosh and Red Dwarf. If you like absurd, strange, sort-of-off comedy that has a hint (or, in the case of Red Dwarf, more than a hint) of science fiction, you'll like these shows.

Telling you all about my Mighty Boosh love allows me to post this:



Jazz, baby.

I recently watched the BBC miniseries Sherlock. It's a contemporary remake of the classic stories, incorporating modern science and gadgets and slick (but not overbearingly so) special effects. There are three movies in the miniseries, and all three are terrific. Telling you about my Sherlock love allows me to post this:



Other noteworthy shows:

Louie - the most underrated comedy on television. Every episode is brilliance personified.

The Whitest Kids U Know - the last season isn't all that great, but the first four are crazy-hilarious.

As for movies, I've tried to keep track of most of them, but undoubtedly neglected several. Here's a summary of those we've watched recently that I managed to remember:

Trust - Clive Owen and Catherine Keener deal with the effects of a relationship between their teenage daughter and a guy she meets on the scary, scary Internet. Realistic, and recommended watching for any kid who likes to chat online with people they  don't know. 3 out of 5.

Terri - John C. Reilly as a high school principal who tries to make a difference in the lives of "good hearted" kids, especially fat and socially-awkward Terri. The scenes between Reilly and the kid playing Terri are good, but overall this film feels like something is missing. 2 out of 5.

Meek's Cutoff - A western with Michelle Williams and Paul Dano sounded so promising. Too bad the film literally goes nowhere. It ended so abruptly I rewound 10 minutes just to make sure I didn't miss anything. Nope. 1 out of 5, just because I didn't turn it off before it ended.

Submarine - cute indie comedy directed by Richard Ayoade. Had a Wes Anderson feel to it. Kid falls in love, and tries to figure out what's up with his parents' relationship. 3.5 out of 5.

Tucker and Dale vs. Evil - Rednecks torment college kids in the woods. Or do they? Well-made and really funny. 3.5 out of 5.

Harry Potter and the Chamber of Secrets - A little too much snake action for Frank, but still terrific. 4 out of 5.

Harry Potter and the Sorcerer's Stone - Beautiful, exciting, entertaining, just like the book. 4.5 out of 5.

Bridesmaids - Kristen Wiig/Judd Apatow comedy. Funny, but not as great as other Apatow films. It might grow on me. I liked it more than Frank did. 3.5 out of 5.

POM Wonderful Presents: The Greatest Movie Ever Sold - Morgan Spurlock documentary about product placement/brand integration in films. Started slow, but got better. 3 out of 5.

It's Kind of a Funny Story  - Depressed kid and the hospital ward. Very sweet, moving and entertaining. 4 out of 5.

Paul - Alien and Brits together on a road trip of sorts. Laugh-out loud funny, other times really sweet. I love just about anything with Jason Bateman, anyway. 4 out of 5.

Super - Rainn Wilson is a wannabe superhero. Gritty, funny, sweet and ultimately very touching. Ellen Page co-stars - love her. 3.5 out of 5.

Limitless - Bradley Cooper takes superpills, and Robert De Niro tries to bring him down. Fast-paced, great special effects, entertaining all the way through. 3 out of 5.

Your Highness - Someone said, "let's make a raunchy medieval comedy!" and this was the result. I was entertained. There are lots of laugh-out-loud moments, and James Franco is great, but the film is ultimately forgettable. 2 out of 5.

Source Code - Jake Gyllenhal lives a moment over and over. Good premise, good special effects, good, entertaining action movie. 3.5 out of 5.

The Adjustment Bureau - A romance disguised as an action movie. Excellent emotional connection with the characters. 4 out of 5.

Rubber - An absurdist story about a homicidal tire. You read that right. I really liked this movie, even though I can't really explain it. 4 out of 5.

Tuesday, September 13, 2011

Fusion.

When we were in Colorado several weeks ago, we ate dinner at PF Chang's because they have a really good happy hour. One of the items on their Happy Hour menu is an "Asian street taco" of spicy shrimp in a red curry sauce. I thought these were delicious, so when we got home, I set out to make my own version.

The result is a blend of Asian and Indian, in a Mexican wrapper. If that's not fusion, I don't know what is.

Lynn's Curry Shrimp Tacos
Servings: 2 servings of three tacos each

18 medium-sized raw, peeled, tail-on shrimp (like the ones sold frozen at Costco)
Penzey’s Arizona Dreaming spice blend
1 c. light coconut milk
1 1/2 Tbsp. red curry paste
1 Tbsp. lite soy sauce
1 Tbsp. mirin
2 tsp. fish sauce
1/2 tsp. cayenne pepper (or to taste)
Juice from one lime
1/2 cucumber, cut into very thin slices
1 1/2 c. shredded red cabbage
1/2 c. fresh cilantro, chopped
6 small soft flour tortilla shells, warmed (wrap in damp dishtowel and put in 250 degree oven for 20 minutes)
4 lime wedges

Preheat your grill.

Sprinkle the shrimp with the Arizona Dreaming, a little on each side of each shrimp. Thread the shrimp onto metal skewers.

Combine the coconut milk, curry paste, soy sauce, mirin, fish sauce and cayenne pepper in a small saucepan and bring to a boil. Boil gently for about 5 to 7 minutes, or until sauce thickens. Add the lime juice and taste, adjusting seasoning as necessary. Reduce the heat to low to keep sauce warm while you grill the shrimp and assemble the tacos.

Grill the shrimp for about 2 minutes on each side, until done.

To assemble the tacos, place three or four cucumber slices in each taco shell. Add three shrimp to each taco, then cabbage, then cilantro, then sauce. Serve with additional lime wedges to hold up the tacos and to use for additional seasoning.

I love this sauce, which is similar to one I use in another recipe involving salmon, bok choy and peppers (I'll post that one soon) and thin sliced cucumbers in a taco are really, really good. I would never have thought cucumbers would work in a taco, but they're just perfect!

The meal comes together pretty quickly, so it's great for a weeknight. They beg for a fairly light and fresh side dish, so we've served these with watermelon and tomato salad, as well as corn on the cob.

What's an ingredient that you've had prepared in an unexpected way that worked out well?