Cup of Pencils

I'm 26. I love white-cheddar popcorn, cartwheels, sunflowers & dorky 5Ks. My husband has leukemia. We measure time B.C. "before cancer" and A.D. "after diagnosis." Cancer: one more thing to nag about!

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contribution

 I was reading a blog written by federal judge and thinking about how full it is of interesting insights and observations.  And here is my blog about the ins and outs of my life.  It’s a fairly simple and average life.  I think there is virtue in the simple and the average.  But at some point I’m going to need to push myself.  At some point, I want to be the type of person who knows a lot about society and has a lot to say.  I think I have a sound mind, care about my country deeply, and have the work-ethic (most days) to contribute positively.  It’s pretty tough right now for people around my age to chime in though.  With the economy, fewer of us are gaining professional experience right out of school, which means the knowledge of how things work is becoming much more concentrated than it has been before.  And as fewer of my peers are stepping up, it’s easier for me to think that my time to really contribute it still far out ahead of me rather than right now.  These are all things I have to keep in appropriate perspective.

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Training Day 2

I have jumped into training for this Tour de Cure event whole-heartedly.  Good thing because I had a long way to jump.  On Monday I both acquired a bike and completed my first day of training.  (Day one was a rest day.)  But yesterday A and I did the first ride of the training program.  25 minutes, steady pace.  We rode downtown, across the river and into the next state just a bit.  It was pretty good.  I finished the whole thing without too much difficulty. A finished the whole thing too.  He was too weak to keep up with me cycling down some of the straight-aways, but he made it.  In addition to completing the day, I had my first real biking experience of having a bug fly right into my eye.  It really stung.  From here on out, I'll be wearing sunglasses.  This totally counts as a battle scar.  The experience was also really pleasant.  I could do this again & again & again.  Good thing I feel that way now since that's what this training program will require!

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tour de cure

As you know, this blog has mostly been about random stuff and/or cancer recently.  But I'm going to shift gears for a quick moment.  I have juvenile diabetes.  I've had the disease since I was 9.  So, A & I have basically beat all the odds in that we're both young and otherwise very healthy and active, but combined we have leukemia and diabetes.  Most everything I've been doing recently has been cancer-focused, but I'm going to take a quick detour and have some involvement in the diabetes community.

In particular, I'm going to be riding in the American Diabetes Associaton's Tour de Cure in a little less than a month.  Right now I don't even own a bike and am kinda intimdated by the spin classes at my gym.  But, as a diabetic it's really important to me to support diabetes fundraising because the disease plays a big role in my life and will likely be even more annoying (debilitating, lame, etc. etc.) as I get older unless researchers are able to find a cure.

If you're interested in joining my team, take a look at my fundraising link and help me spread awareness: http://main.diabetes.org/site/TR/TourdeCure/A2NSD-NebraskaSouthDakotaArea?px=8776015&pg=personal&fr_id=8648.

Thank you :) :).

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a sense of peace in it all

It is raining and freakishly cold.  All I want to do is sit inside with the candles on and snuggle in blankets on the couch.  A is off doing his first physical evaluation to see where his fitness level is before he begins the LIVESTRONG training program at the Y.  Yes, he's still taking chemo pills a few times a week and going to the hospital every so often, but this is the recovery phase and I have jumped into that phase with my whole mind.  Every now and then my brain wanders, noting the odds that the cancer will come roaring back after only a month's worth of break, knowing that the whole grim cycle has come back on lots of people just as they're getting ready to push forward, but then I try to push those thoughts away.  I think about the rain, about everything A is doing to gain his strength back, about my next career moves, about dinner, about love, about God.  And there's a sense of peace in it all.

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Reverse osmosis

When I was in elementary school, I liked to write letters to my future self.  Generally, the letters contained scoldings and warnings, things like - - DON'T DO DRUGS!  IF YOU EVER THINK YOU WANT TO DRUGS, REMEMBER THEY ARE BAD FOR YOU & one of my favorites: GROWING UP IS DUMB.  MOM SAYS YOU CAN BE A TOYS R US KID FOREVER SO MAKE SURE TO ALWAYS LOVE TOYS R US.  DON'T START LIKING GROWN-UP STUFF.  GROWN-UPS DON'T EVER PLAY AND HAVE FUN.  My poor little elementary-school-aged self would be pounding fists into the sand at recess over this, but I am so excited about all my progress on reducing harmful compounds in our condo.  I have finished a ton of research and am now ready to finish convincing A and then get a home water filtration system!  If only I had known the ecstasy of finding an awesome home water filtration system at age 9.  And I called a few plumbers and called them and asked the correct questions about what to do to get the system installed.  And found a plumber I liked.  Man, I feel like such an adult and I'm ecstatic.  And have really been wanting to get our water filtered after doing some research about what is still in the water in Omaha.

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that part of myself

It's interesting to me how much I still need myself sometimes.  Even though I love A tons and things are really mostly pretty wonderful, there are still some days where I just need to be alone and emotionally worn out by myself, quite possibly worn out for no reason at all.  I keep listening to the song "Boston" by Augustana and thinking about some of the different imagery, carrying your thoughts across an open field.  And the line keeps standing out so boldly "You don't know me.  You don't wear my chains."  You don't know me completely.  There are still some parts of myself that are just mine.  There are some parts of me that feel the world alone.  I used to write poetry.  Sometimes I think that I used to feel the world a lot more deeply.  The odd thing is that I feel like I used to feel the world more before things started working out well for me - - before I found A, got a job and fell into the normal routine of life.  Generally, I think I'd prefer to have this stability and love, but sometimes I miss the deep feeling and experiences that I used to have with life.  It's not the same when you're in loving a relationship and everything is sheltered and stable.  There's no need to dramatically walk across campus alone, there's no deep inner turmoil, and for me there generally isn't the same reflection, the same playing with words, trying to grasp the complexity of all my experiences.  I used to walk across campus, tumbling my feelings in my head, sit up in the library and write until I had twisted familiar words into new truths.  Then I could leave feeling satisfied.  And wise.  For the most part, my experiences don't feel complex in the same way that they used to.  And there is a part of me that misses that.  That misses sorting through things on my own, swimming through puzzles of feelings alone, buying a cup of coffee and stepping into the shower in my own apartment alone without even taking off my clothes.  I used to love showering with my clothes on because it was like this outside reflection of feeling so far from caring about anything.  I found it cathartic in a way I suppose.  But when you live with someone else you can't really do that type of dramatic thing because someone would care and wonder what was going on and you'd be forced to explain whatever was going on in your head and whatever it was would not merit being that crazy.  I haven't really found a way to still retain that part of myself.  I'm not sure why it's important.  It's not usually important.  But some days it is.

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Professional Protip: Shoe Polish

I'm not sure how I missed out on shoe-polishing.  My mom knows about it and apparently most of the world knows about it, but somehow between debate team and applying to college I never picked up on this essential skill.  After having worked now for about nine months, I had worn the pumps I added to my wardrobe to the point of embarrassment--scuffed toes, worn off heels, tiny rips in the leather--and was complaining to A about the cost of buying the exact same pair of pumps again in black, brown, and navy.  He looked at me completely confused and I assumed it was because he didn't understand what a big deal it was to have such worn out shoes.  To the contrary, he thought they looked awful but just assumed I'd been too lazy to polish them.  Thank goodness for his military upbringing, he busted brown and black polish out of the closet and showed me how to work it into the shoe until my beat up heels looked completely brand new.  Each container of shoe polish is $3.99 (http://www.shoecaresupplies.com/Shoe_Polish_p/kiwi-tin-small.htm) compared with what have been hundreds of dollars to replace the pumps.  And they look pretty much perfect now.  So awesome.

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Such a kid

I put together a salad to go with dinner that just did not taste great.  I was trying to use the vegetables we had left before they went bad and something about the combination turned out to be awful.  A finished his up pretty quickly and tried to encourage me through my "experience" with the salad by promising me that he would take me to Red Mango if I ate everything on my plate.  (I am such a kid.)  I was still picking at it when he got up from the table to take care of something for awhile.  I cleared the table and put the remaining amount of salad down the dishwasher disposal.  (I am such a kid.)  I walked over to where he was working and he asked if I had finished my dinner.  I answered in the affirmative (I mean the word finish is open to interpretation here).  He looked at me, wrapped his arms around my oversized sweatpants and picked me up off the floor - "Did you really eat all of your food?"  I stared back pretty sheepishly and he started roughing up my hair. "I knew you didn't finish your food!" "I know everything about you!" he said setting me down with a kiss to the forehead. (We are such kids.)  But, he is still taking me to Red Mango. (Ah, the joys of being an adult.)

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I'm pretty sure that's allowed

A did his first outpatient chemo on Monday.  About an hour of Vincristine.  (Spell check doesn't recognize that word, lucky you, spell check.  I wish I didn't recognize it either!)  It really doesn't seem to be affecting him too much, which is awesome.  We'll see how the methotrexate goes starting on Friday.  But, since A seems to be tolerating things okay, I got him signed up for the LiveStrong training program at our local YMCA.  It's a 12 week twice a week small group personal training program for cancer survivors to help them get back to where they were fitness-wise.  A was really struggling with the idea of working out because it's hard for him to realize how much of a toll all of the chemo/being unable to really do anything has taken on him but he is willing to do this, I think because it's working out in  a context where he thinks he'll be successful.  I have to say that I really couldn't care less what Lance Armstrong cheated at or his been indicted for in federal court.  He has made a positive difference in our lives.  LiveStrong is a God-send and I am thankful for it all the time.  I am not saying that I don't respect the law or that I think everything was right.  I think he should face whatever penalties are appropriate and do whatever justice demands.  I'm just saying that even if he's a criminal, I like him.  And I appreciate what he's done for me.  I'm pretty sure that's allowed.  I think it's possible to be a criminal and a hero. 

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in our temple of sheets

Sunday mornings.  I love waking up in bed next to A and not having to peel myself out right away.  He sleeps longer than I do, but when I wake up I tap him on the shoulder and with his eyes still glazed, he reaches out for me and wraps his arms around me.  And I lay there awhile awake and wrapped up in our temple of sheets.

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family

A's parents and youngest sister came down from Indiana to have a celebratory dinner for finishing chemo.  A's mom brought four racks of ribs and German potato salad.  We added extra planks into the table at my parents' and it didn't matter where anybody sat.  Our parents told different stories about all the kids being nuts as kids.  My little sister R made lots of dramatic statements about how we were too slow to get to the amazing dessert.  A's little sister L and her boyfriend, K, sat together holding hands at the table, and it wasn't long before the next person was cracking a joke.  After dinner, we built a fire in the fire pit on the back porch and bundled up in coats and blankets sharing story after story.  The time moved quickly and easily and it was sad when it had to end.  It's funny.  When I was a child, nights with families were fun enough, but more of an obligation and the real party was always just hanging out with your friends.  Now that I'm older it's the reverse.  Having all of our families together was the highlight of the past few months.  The fire pit and the food were just bonus.

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3.6 miles

A's sister and I are training for an obstacle course 5K and went out to do our first training run last Saturday.  Her boyfriend, K, is one on our very good friends, so it works out perfectly, we went running and K walked some with A.  It was great to finally be outdoors and working out.  And then, about 1.5 miles in, we noticed a bunch of chalk writing on the route encouraging runners who had some kind of association with leukemia, either they were doing an LLS run or someone on the marathon team had had leukemia or something because the markings that we'd seen saying "GO X TEAM!" were suddenly saying "Leukemia sucks!" and "You got this!"  It was kind of a cool moment to have some connection through the sidewalk with somebody else doing something leukemia-related.  I looked at A's sister and I said that we'd have to tell A about the chalking as we definitely did not think he would make it that far.  But, A and K ended up walking 3.63 miles.  Yes.  No joke.  The same boy that I could hardly get from the house to the car in the garage to rush to the hospital a month ago walked 3.6 miles this past weekend. There goes a fighter.

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Thoughts turning to the wedding

(we're married but haven't had a chance to have a wedding yet):

I told A I was having trouble figuring out how to do the table-numbering.  He said, "oh, that's easy, I can do that for you.  I'll write the numbers on index cards, fold them in half, and set them on the tables."  I was sitting on the counter in the kitchen eating pretzel twists to try and cure my low bloodsugar and I laughed so hard I almost fell off.  A's answer was so logical and so right, but so impossible now that pinterest has taken over.  I explained to him that with pinterest, table-numbers are becoming a "thing" and I showed him all the elaborate table numbers involving door knobs, wine bottles, and eggs.  Shaking his head, he said "pinterest is corrupting youuuuu . . ."  Then he thought about it a moment and said, "What if we numbered the tables in binary or if everyone had to answer a riddle to figure out what table they were sitting at?"  Horror.  We are doomed :).

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The first time I said the words.

On the phone:

Me: And so I'd like a reservation for about 30, but it could increase.

Man @ Rock Bottom: Okay, we've got it.  What's the occasion? 

Me: (Pause) My husband beat cancer.

(My breath caught up in my throat.)

(My husband beat cancer.)

These words are so happy.  I could even hear the man break out into a smile on the other end of the phone line.

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A day later.  Fine.  I think he's going to be fine.

!!!

Does that mean we get to be normal soon?  Okay, pick up where we left off in September.  I can't even see back to September through all these weeds.

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Fine

Today our doctor said that he thinks A will be fine.  "I think he's going to be fine."  I do not think I have heard a better sentence in my life.  There was the sentence where A asked me to marry him.  That was a lovely sentence, but this one was even better.  This sentence was the antidote to all the nights up crying searching the Internet.  All the times I tried to answer the question myself knowing that I had no real information to base my answer on.  All the things I told myself had to be good signs that I knew were irrelevant.  

And then to finally be given that sentence.  We can't know, you can never know, but this is the first time anyone has been willing to make a guess about A's ultimate prognosis.  And this sentence is a bench to rest my brain on for a moment, a place I can come back to from time to time on this mental journey when I need to recuperate.  Do I dare to think that we might make it out like bandits without having to experience the full pain cancer so often causes?  I am starting to think it, tentatively, afraid to dip in with more than my toe.  Despite my mental discipline, with this new bolster, my mind keeps racing and coming back, thinking freedom might be out there on the horizon.  Maybe we really will be looking backward someday, free from these weights, the frozen paralysis a fading memory.

Fine.

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Eat the Rainbow.

A is out of the hospital, and, great news, he's gained some weight.  Now that A has finally been able to hold onto some weight, I can begin to focus on nutrient-filled meals rather than calorie-filled meals (thank goodness this day finally came, I'm not sure how many more calorie-filled meals I could afford to eat and haven't had the time to cook two separate sets).  We were given the advice that you should eat the same way to keep cancer from relapsing that you should eat to keep it away in the first place.  You can find lots of detailed advice, which, trust me, I'm working on, but in the meantime, we're going with the simple adage: eat the rainbow (in fruits and veggies, not skittles!).

To prep for the first week of trying to really do healthy, nutrient-filled meals, I went to Whole Foods.  And yes, I bought organic.  I've always been a skeptic of Whole Foods (so overpriced) and the whole organic movement (so overpriced) but the more I research leukemia, the more I am convinced that A's leukemia was caused by environmental factors.  A is negative for every genetic marker of leukemia and when I look at the different things in the environment where we live, it turns out that Omaha has illegal amounts of metals and chemicals in the soil and in the drinking water and these particular compounds have been shown to cause leukemia.  So, for me this is a no-brainer.  There's a chance that A is sensitive to something in the environment, so filtered water (the water stats were the scariest) and organic food it is.

Last night, I made a salad with spinach, carrots, radishes, mushrooms, green onions, tomatoes, and little bits of mozzarella cheese.  I cooked some chicken in Italian salad dressing and then tossed that in the salad as well.  We had that for a light dinner.  Today for lunch, I put the leftover salad into whole wheat wraps and paired it with a half grapefruit each.  For dessert we had bananas.  Set the oven to 350, toss some brown sugar, white sugar and cinnamon over the sliced bananas and put leave them in the oven until the brown sugar has turned into sauce and they seem well-done enough for your taste.  I dumped a lot of cinnamon on there because our doctor has specifically mentioned that cinnamon has been shown and continues to show amazing health benefits.

We'll work on keeping this up and we joined a community-supported agriculture endeavor in our community, (http://bigmuddyfarm.blogspot.com/), to help become more involved in the food we're eating and to help us to gain exposure to tons of different vegetables.  It's great to finally feel like there's a chance to be a little more on the offensive rather than defensive when it comes to our food.