Friday, February 25, 2011

Dance Your Troubles Away

Yesterday was a tough day. It was my second spinal tap in a week. I had to wait 2 1/2 hours for the pharmacy to get the correct doctor's order for my chemo, which sort of fueled my anxiety. Then, as I lay on that skinny little table, face down, back exposed, the doctor almost hit a disc in my spine and had to prick all over again.

Yes, I admit it, I cried. It didn't even hurt--thanks to beautiful modern drugs. It was the whole situation that brought me to tears. The thought of laying face down on a skinny table, and that I'm going to have to do it again and again and again. (but that's all. three more times!) And knowing that my back would be oh-so-sore for another week and that I would lay at home alone on my back. It's sort of funny that the discharge instructions after an intrathecal chemo injection tell you to drink 8 oz. of water every hour, which means you have to get up and go to the bathroom every 20 minutes. Not comfortable.

But you know what? Those nurses, my two at interventional radiology, Mary and Tina, they kept me in that room and hugged me and shared an orange with me and made me laugh. And Tina came in and hugged me every time she came to check on me. And Mary called me today to make sure I was doing ok.

But the best? Julie Brady came over last night and danced my troubles away. After Virginia's frantic call ("I think Jenny needs you to come over tonight" which is code for "I don't know how to help Jenny stop crying"), Julie marched into my room, wearing her paint sweats, her awesome hair in three tiny pigtails, and danced. And I laughed my head off and all my troubles melted away.

Wednesday, February 23, 2011

Here Comes the Sun

And I say, it's all right!

I'm trying to see how many blog posts I can title after songs about sunshine. I have this fascination with the sun. I love the sun! Perhaps it comes from a few years in a basement bedroom with no windows. Now of course I absolutely LOVE the two windows in my bedroom, upon which I hung my most sheer Ikea curtains that let in as much light as possible.

Today Marni and I took a beautiful sunny though chilly walk. We went much further than I've gone in the past. I think that means I'm getting stronger. With a little more energy. Yahoo! Bring on the marathons! (Not really. Please no. Not now. Maybe later.)

Of course just as I feel like my back is recovering from last week's spinal tap, I go again tomorrow morning. I like to think I am going to get this stuff down. At least I'll be friends with all the people at interventional radiology! (especially the ones with the happy drugs)

I decided this morning that even when we don't have control over what's happening to our bodies, we always have some kind of control over the way we care for our bodies. I believe that we have been given a custodianship over our bodies in this life--and regardless of the disease or accident that may befall us, we have a responsibility to care and feed and rest and water these bodies. I am convinced that even with poisonous chemo running through my veins (and spinal sac!), I can eat the proper foods to provide my crazy body with appropriate nutrients, that it may heal and grow proper cells and blood and serve me throughout all my years.

I need this little body. I've got miles to go and I need to make sure I get there intact! Or at least taped together.

Monday, February 21, 2011

Pocketful of Sunshine

Sometimes you have to find your own sunshine on gray, gray President's days.

I think I may have overdone it yesterday, with two whole hours of church (mind you, I had to be on task with the New Move-in class AND conducting Relief Society), a Relief Society presidency meeting, the home teachers coming, and such. But I just felt so good and capable and I handled it all very well.

But this morning when I woke up to gray and the promise of rain, I just wanted to stay in bed. My body wanted to stay in bed. So that's where I am.

Don't worry--every lamp in my room is on and it's bright as sunlight in here.

And double don't worry--I'm about to put in a movie and actually work on my ever-mounting email inbox. After a snack. and maybe a nap. and maybe some girl scout cookies from the Maxwells.

Saturday, February 19, 2011

One Thing at a Time

You know, the only way to get everything done is one thing at a time. Whether that's one chemo treatment, one bill, one spinal tap, one email, one task. One thing at a time.

This past week on Thursday I started my third round of chemo--it's called Maintenance and Prophylaxis. First spinal tap: done. It's the third I've had in this cancer experience, and while I must say it's never as bad as it sounds, I became pretty anxious about it the night before. I happened last time, about six weeks ago, to see the needle as I waited for the doctor and nurse to confirm the dose of chem with the pharmacy. That's a picture that I can't get out of my head. I also have to say they have pretty incredible nurses who are so sweet and so positive and give me the best happy drugs. PHEW for happy drugs. And the doctor who administered the chemo into my spinal sac was FAST. Yeah for fast spinal taps.

And this week I put together a spread sheet of all my bills and insurance claims. Holy cow. This stuff is crazy expensive. CRAZY. I got an itemized bill from the hospital for my care from Dec. 14 to the present, which is pretty much all outpatient infusion stuff, and it is CRAZY. The only thing I can do is practice my Excel spreadsheet skills (I'm a historian. I have very little spreadsheet skills) and try to organize my information. Because if you don't know your information, you can't figure out what you're going to do with it, right?!

One thing at a time. One day at a time. I love how D. Todd Christofferson talks about how in the wilderness the Israelites received their manna one day at a time. It is enough.

Wednesday, February 16, 2011

Dear Friends,

Wow--this blog auction stuff has been incredible! I had no idea. No idea. And honestly, I've felt a little embarrassed by all the attention. But as a friend of a friend said, an experience like this opens one up to the amazing outpouring of love and to begin to know how much we are loved.

And oh boy, do I feel the love. It fills me, straightens my bending, strengthens my weary bones, and fuels my exhaustion. I feel the support and find purpose outside of my bed.

So a few acknowledgments are in order:

To those who donated for the auction--you are amazing. You demonstrate your skills and talents and the ability to create and make the world beautiful. I love how every item up for bidding was so individual to your abilities, from Dutch oven dinners to quilts to babysitting and math tutoring. I realize that we all have a contribution to make and we all need to rely on each other because individually we can't do it all on our own.

To those who bid--you are generous. Beyond generous. I want to be like you. I want to learn to dig deep and spread what I have to help others. To those of you who outbid each other, you are funny. Stay friends, though, ok? Don't be bitter, be better. To those who won, congrats! I hope your winnings are everything you wanted them to be and I hope you always remember the love and gratitude I have for you. To those who didn't win, again, don't be bitter, be better. Thank you for raising the stakes. You have boosted me in many ways. I love you.

To those who advertised on Facebook and blogs, thank you for spreading the word. I don't know many of the people who participated, but I feel like I found a whole bunch of new friends. Thank you.

To those who donated directly into the Paypal account, thank you. Thank you from the bottom of my heart. You all are helping me to realize that I can get through this, that I can figure out how to manage it all, and that I will beat cancer.

To Emily who coordinated this all, your quiet service and love and support are incredible and I will always appreciate this. Thank you for sharing your time and hard work.

But most of all, to all of you, far and wide, I have learned something that will stay with me the whole rest of my long life. Marjorie Hinckley once said, "Oh, how we need each other." Thank you for being here for me in this crazy experience. I will be here for you.

In other news, I have a spinal tap tomorrow morning. The first of five weekly chemo jabs into my spinal fluid. Think happy thoughts for me!

Sunday, February 13, 2011

Valentine Shout-Outs

Image from here.

So tomorrow is Valentine's Day.

I used to dread it--I had these crazy ridiculous expectations and I didn't realize that I could choose-my-own-adventure on Valentine's Day.

But this year--and this past week in particular--I've realized that even in the worst of circumstances, we can still choose.

And I choose to shout out to a few things that I have come to love:
  • I love all you dear folks who have so generously donated items and services to the We Love Jenny Auction. It's been really weird and surreal to be on this end of such a venture. I have been amazed at the ingenuity and creativity of the talents of friends and people I don't even know. There is some amazing stuff, here. Check it out!
  • I had no idea when I chose to come to George Mason University for my PhD that I would end up in the most supportive history department in the country. On Friday my adviser visited me in my home with a valentine from the faculty of the department. She and I both cried at the generosity of such wonderful people. Thank you for the financial and the intellectual contribution. And for those of you in the department who asked and wondered, yes, oh yes, I will be back. And you will never regret the decisions to admit me to the program, but to continue me in the program. Mark my word.
  • I value the ability to work. In our house, each roommate takes a weekly turn to clean. I have been relieved of the duty since oh, October, and I'm so grateful to live with clean roommates. Yesterday I cleaned the kitchen. It took me a really long time and I had to take a few breaks and a little nap after, but it's anti-bacterially sound and I feel like I can contribute. And it felt good.
  • After a tiring week--I literally stayed in my house from after Tuesday's appointment through Friday--I ventured out. On my own. I drove to the pharmacy and to Target. And then I came home and took a nap. But there is something about being independent and driving around, something liberating, even if it is only to Target and the pharmacy. And it was sunny. And I loved it.
  • I love modern medicine. Even though it often makes me sick--it also makes me sleep and eases my pain and--I believe, deep down--it will make me better. You just watch out.

Thursday, February 10, 2011


Yesterday was one of those days. You know how you wake up and you know immediately it's just not going to be an A+ day? Or even a B or C day? Not really even passing?

I got up, let in the plumber to look at our rusty sink (he had to make a special order so he didn't stay long), and then crawled right back into bed. And stayed there. Until I had already cried my eyes out because my body STILL hurts from chemo last Friday and I knew it was time to take matters into my own hands.

Yesterday I felt like I had ADD. I have a million different things started and I just can't finish anything. A sewing project that looks like a first-grader made it, piles of laundry, piles of stuff, even an unfinished box of Skittles. I just felt unfinished. My bones hurt, reminding me that my chemo, though finished for round 2, is not in fact finished. And that darn nausea resurfaced last night. Grrrrr.....

So I dragged my tired bones downstairs, had some lunch, did some laundry, and didn't even think about really doing anything else except to watch HGTV and Gilmore Girls and read my latest book, Listening is an Act of Love. It's a collection of Storycorps stories of just run-of-the-mill Americans. And I cried my eyes out again. Life is tough for a lot of people. Stories of how other people have made it work in light of tremendous odds sort of filled me. And finished me.

Finished me in the sense that I realized this one point: I need to take care of myself. I need to be gentle with me. I need to allow for the unfinishing and finishing and be patient. I need to relinquish the expectations I have and recognize the moment. Finishing requires a lifetime and more. And that recognition means taking things slowly, pressing through, finding completion in the small things, like a load of laundry or a meal staying down.

I loved waking up this morning feeling entirely different. I knew in my bones that it was going to be a better day. I let in the stove-fixer guy and didn't go back to bed. I made a list that I know is going to take me months to finish. And I've finished 2 things on there, working on more. And I'll take some breaks and maybe a nap.

And try again tomorrow.

Tuesday, February 08, 2011

You know it's a good day when...

  • You make your bed.
  • You can drive yourself to your appointment. Even if you have to park on the third floor of the parking garage with no elevator and walking up and down those stairs wears you out a little bit. You did it!
  • You go to the hospital to get your PICC line dressing changed and blood drawn, and while the line flushes, no blood comes out. Just when you begin to panic a little that the leukemia is back and has sucked all your blood, the nurse decides to try a clot buster, and after a half-hour flush, the blood comes out just fine. PHEW!
  • You have a cheeseburger at the Carlyle for lunch with Sheila! Delish!
  • You take a two-hour nap.
  • You haven't taken any anti-nausea meds so far today.

Monday, February 07, 2011

The End and the Beginning

It's true! I finished my second course of chemo on Friday! HOORAY! Let the records show that I SURVIVED. My stomach, however, continues to pay the price, as do my bones.

I met with my oncologist this morning and we've scheduled round 3, starting next Thursday. He promises me that this round will be much easier--that I will be able to get out of bed and have a life. We'll see about that!

Sunday wig shot...

And in other news, what a wonderful weekend with Debbie in town. We were quite the sight--she's six months pregnant and I'm bald and sort of a hot mess. And she was the best thing that happened to me this weekend--she cleaned my bathroom, organized files, helped with laundry and errands, and made me laugh. Oh how I love her.

Thursday, February 03, 2011

Move over, Barry Bonds

On certain chemo and blood transfusion days, depending on the drug, I also receive a pre-med of steroids to prevent an allergic reaction (which believe me, are NOT fun although they ARE memorable). For some reason, Tuesday's steroid treatment totally pumped me up. I had energy, an appetite, rosy cheeks, and a racing heart to last me through the next couple of days. I answered emails. cleaned a little bit, ate a LOT, and attended a very productive ward council meeting last night.

Good news: my white blood cell count went from 0.3 on Monday to 6 yesterday! Which means no neupogen shot today! No more aching bones! for now!

Bad news: lack of appetite and nausea is back. I didn't want to get out of bed today. Did you know that chemo also causes lots of burping and heart burn? Oh my heart. It burns. And last night by the end of the meeting, my hands turned into claw hands and wouldn't unclench. I couldn't even turn on my lamp. Dang neuropathy.

Good news: tomorrow is my last day of chemo this round.

Better news: Debbie is coming this weekend. Oh my goodness. I can't wait.