Tender Mercies

Little Miss PICC-y

2011-07-18T12:25:00.003-04:00

Today I bid farewell to an old friend, affectionately known as Little Miss PICC-y. Goodbye to the little dangly patch right above my left elbow.

Goodbye to the little sock covering it every day so the dangly didn't catch on everything or poke out.

Goodbye to weekly flushes and dressing changes.

Goodbye to sutures pulling on the skin of my arm.

Goodbye to three-minute showers with Glad Press 'n Seal and cloth medical tape (3 boxes!).

Goodbye to 3/4-length sleeves.

Goodbye to not being able to sleep on my left side without my heart going into flutters.

Goodbye to flinching anytime anyone grabbed my left arm.

Goodbye to not being able to lift weights and my lost guns.

Today I started my maintenance chemo--a 10-minute IV of vincristine once a month and a bunch of pills. (which means I'll have to get an IV once a month. and weekly blood draws where they now have to poke me.) Hooray!

The new me--Little Miss Somersault
(note her long ponytail... my dream hair-do)

Gorgeous

2011-07-06T13:12:00.002-04:00

My nieces use that word to describe very beautiful things, like pashminas and jewelery and fancy dresses. I love it.

This morning my oncologist used it to praise my blood counts. "Your labs are GORGEOUS!" he said, all in caps, with an explanation point. Higher than he even predicted. This little body is a fighter! Hooray!

He did say that I have 60-year-old bones, due to all the steroids and chemo that has pumped through my body. I'm to begin exercising. A lot. And drink a lot of milk. HOORAY! Who wants to go running tomorrow with a baldy with neuropathy in her feet? I may be slow but I'll be out there! (unless it is entirely too hot and humid. Sorry to disappoint.)

The plan is to start my maintenance phase in a week and a half. One IV-shot a month, with a blood draw, and then just pills! And my PICC line (affectionately known as Little Miss PICC-y) will come out after that first day! I only need to see my oncologist every three months! I told him I would miss him. But not too much.

On other fronts, as I drove to the hospital this morning I passed a man in his car with a parrot on his shoulder. Alas, no photo. I took a picture in my heart, though.

On another front, I just lit a match and it broke in half, the flaming end falling onto my skirt, before falling to the ground and burning out. Yes, it burned a hole through my skirt. The nerve! Who does that?!?

The Bibopsy

2011-06-28T15:47:00.002-04:00

Remember my horrible rash last week? Well after days of no changes, my nurses sent me to a dermatologist. A mystery dermatologist. In McClean.

The mystery dermatologist took one look and said, "well it could be leukemia cutis," and immediately wanted to do a biopsy. The idea made me nervous--I had just been cross & matched for a transfusion; my platelets and white blood cell counts were VERY low and I worried about the risk of bleeding and infection.

But she didn't listen. And she didn't ask any other questions. She just dug out a piece of my neck and stitched me up. No other rash possible explanations, no consultation with my oncologist, no cream or anything to care for the rash.

Of course on the drive home I called Janiece, who looked up leukemia cutis while I drove. Not good. It's the spread of leukemia to the skin. Basically, it means the chemo isn't working, that I would need an immediate bone marrow transplant, and that my body is falling apart and has a very good possibility of not going back together.

Needless to say it's been a very uncomfortable week, fraught with anxiety and fear.

BUT as I pieced together things my oncologist had said to me in the past ("you are leukemia free;" "leukemia doesn't hide; it always shows up in the blood;" tri-weekly blood tests with no leukemia showing up; "the chemo is working"), and the lack of information from the dermatologist or from cancer websites, I worked to discern the words of the dermatologist.

And I prayed. A lot. As did my close friends. And I reached down deep. I remembered promises and blessings and all sorts of things. I realized previous answers to prayers. And I tried oh so hard not to let my fears carry me away. Even as the angry red bumps on my arms and neck came and went and came back and went.

Well today I have some great news. It's most definitely NOT leukemia cutis. I'm still waiting to hear what these bumps are--most likely a side effect from chemo.

So while I'm still a baldy, I have a whole life ahead of me.

Ready to be DONE.

2011-06-22T10:00:00.004-04:00

So I thought I made it through that last nasty round--the late intensification round. I only had one really bad day of barfing and the worst side effects were extreme exhaustion (try 3-hour naps every day!) and loss of hair (I swear I'm more bald than I was before. Is that possible?).

So this week I thought I was back to normal--meaning I could go on walks and do a little exercise and work on my dissertation and my quilt. I so wanted to feel normal.

BUT.

I got this super weird mystery rash last Wednesday night after Ward Council (was it because the meeting caused undue stress? Ask anyone else there...) that looks strangely like pimples on my arms and neck. My nurses have no clue what it is and after taking Benadryl for a week (does NOTHING but make me more tired), they decided I need to see a dermatologist. They kindly made me an appointment for today.

Then yesterday as I went in for my daily neupogin shot, I was informed that I'm severely anemic and that I need a transfusion. So not only do I have my pimply rash on my arms and neck, but a bright red cross-and-match transfusion wrist band. And my platelets went down from 350 to 22.

BUT the outpatient infusion center is too booked to schedule a transfusion for me today.

Let's just say yesterday was very frustrating. I'm tired of non-communicating medical professionals who make decisions about me without consulting ME. This is my deal and today I'm taking charge. Enough of the pimple-rash and how about we schedule a transfusion of 2 units of blood and platelets for Thursday? Just an idea. Then I can go to the Mormon Tabernacle Choir concert at Wolftrap tonight if I promise not to touch anyone or cut myself in the meanwhile. And wear sunblock (85 SPF) and a hat in this lovely 90 degree 100% humidity DC summer weather.

And thank you, Eliza, for your sweet thoughts--they were exactly what I needed to hear yesterday. And thank you dear Jill for sending them my way.

Hair Part 2

2011-06-05T22:20:00.004-04:00

Who needs to shave your head when you can just shower and fill up the drain with hair?

I'm sorry. It's been a traumatic week, what with hair loss and all.

By Friday I knew... it was time to shave the noggin again. And I went through every single emotion from last time. Again. This time I armed myself with the following verses:

Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.
But the very hairs of your head are all numbered.
Fear ye not therefore, for ye are of more value than many sparrows. (Matthew 10:29-31)

But there shall not an hair of your head perish.
In your patience, possess your souls. (Luke 21:18-19)

The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame. (Alma 40:23)

And not one hair, neither mote, shall be lost, for it is the workmanship of mine hand. (D&C 29:25)

Stand fast in the work wherewith I have called you, and a hair of your head shall not be lost, and you shall be lifted up at the last day. (D&C 9:14)

Let him trust in me and he shall not be confounded; and a hair of his head shall not fall to the ground unnoticed. (D&C 84:116)

And this one:

Who shall change our vile body, that it may be refashioned like unto his glorious body, according to the working whereby he is able even to subdue all things unto himself. (Phil. 3:21)

This I believe--this unshaken faith and firm hope and conviction in a God who loves me and in a Savior whose resurrection means my body will one day be perfect. And not one hair will be lost down the drain or on my pillow. This.is.temporary.

The following pictures are not for the faint of heart... but are merely proof of the need to pull out the razor. Thank you Lindi for your mad skillz to clean up my head. Sorry--no after picture. Just know it's awesome. Clean and smooth!

I do love those curls. I hope it grows back in curly!

Hair Today, Gone Tomorrow

2011-06-01T17:55:00.003-04:00

This is what I've been waking up to every morning on my pillow since Sunday. My hair.

Darn that doxorubicin. It's taking its own sweet time to leave its imprint.

At least my curls hide the thinning and loss. So far. You MUST promise to tell me when it gets patchy and I need to wear a scarf.

And I just checked the side effects of the next two weeks' chemo: hair loss.

Well. At least I know it grows back.

Chemo and Quilts

2011-05-30T22:06:00.000-04:00

Last week I sort of took a turn for the worst. I mean, my chemo caught up with me.

I was hoping I could run fast enough to stay out of its blasted reach!

I've had this awful, awful cough, all due to the fact that my body somehow has become this super-charged mucus-producing machine. Seriously, people. Come on, come all! See the cancer girl and her NOSE! The nurse said it is mucositis. Look it up your own self.

I overmedicated on Sudafed, Benadryl, Mucinex, cough medicine with codeine, cough drops. So I slept and slept and slept.

Then my absolute neutrophil count went into the toilet. Meaning I'm neutropenic--very few white blood cells. No more fresh fruits & veggies. And... daily neupogin shots.

And then... horror of horrors!

I got thrush. In my mouth.

My throat was raw and my mouth burned. I couldn't swallow very well. And my whole body ached from coughing. My stomach. Even my butt.

And then. My hair started falling out again. On my pillow in the morning. In the shower. Blast.

So, pumped up on antibiotics, I started feeling sorry for myself. Chemo is ripping my body apart. I just wanted to crawl into a hole and wait out the next four weeks.

But I didn't. I mean, I took naps and I slowed down considerably. And I pulled out some old quilt blocks from a quilt block exchange four years ago (I think. I can't do math with chemo brain). I had used many of the blocks I had originally received in two other quilts, but I had saved all the pink and brown ones. And it was time to put them together.

I had purchased extra fabrics to match some of the blocks (and boy, am I glad I did--this line has become obsolete!). So with the help of Katie, who figured out dimensions and made practice blocks, and Amy, who had this brilliant idea for my adjusted pattern, I got to work.

I ironed.

I measured.

I cut.

I sewed.

Repeat. Several times. In the cool of my basement, while all the world was at the pool for Memorial Day weekend. (I love the pool. I cannot go to the pool because of chemo and antibiotics. Don't be bitter; be better.)

I figured quilting is like my body on chemo. Cut apart. Put back together. Cut apart. Put back together. I can't wait to see my finished product(s).

Goodbye, Doxorubicin

2011-05-24T16:00:00.003-04:00

Yesterday I bid farewell to my last dose of doxorubicin, the red poison.

Six doses over seven months

A quick push-infusion

You prevent cell division by binding to my DNA to prevent cancer replication

And yet...

You kill my hair, you cause mouth sores, you make me oh so tired.

And you make me cough. A LOT. I can't stop.

Go in peace. And don't come back.

Here's to 17 more months of doxorubicin-free chemo treatments. And hair growing back. CURLY.

Put your Steroids to USE!

2011-05-22T21:30:00.003-04:00

I know I've been complaining about all my drugs and premeds. And allergies. And on and on. I just hate them. I do.

But today I realized something. I've been pumped full of steroids, and while I don't like my puff face, or my huge appetite (all I can think about is FOOD!), or my weird sleeping patterns, and I have joked about wanting to use this opportunity to bulk my guns back up again (not a chance in all honesty), I have put my energy to use.

I have cleaned and organized (I wish you could see my room! my desk! my files!).

I have finished a conference paper and applied for a job.

I have monitored my blood work and tried to adjust my diet accordingly.

I have tracked bills.

I have caught up on some email (although I continue to have a mountain--and then people respond and I have even more!).

I have baked and visited people with baked goods.

I have planned how to finish a quilt started a couple of years ago.

I have gone on walks and worked in my garden.

And it feels so good. I feel like things are in order. I am where I need to be.

We'll see what this week brings!

Another Year... another future...

2011-05-19T14:42:00.005-04:00

I'll be honest. Today is my birthday and I haven't really looked forward to it. For a lot of reasons.

Namely that I'm in the middle of an intense round of chemo. Sitting in a recliner on Mondays for three hours being pumped full of red poison tends to make me feel sorry for myself. That and puffy steroid cheeks. And heartburn. And occasional digestive distress. And worrying about blood levels. And upcoming shots that will kick my stomach lining. And bones.

Not cool.

But.

I turned a corner. I made an important realization:

I have a birthday to celebrate. (yes, I feel like I've aged 20 years in the last year!)

I have a future. (with only 6 1/2 weeks of intense chemo left!)

There is hope. (and I have SO much I want to do!)

This morning I woke up and went on a walk, drinking in the misty humid spring day with all the green and flowers around my neighborhood: peonies! a few lingering azaeleas! columbine! begonias! impatience! I've been working on my own little garden, too. Yesterday I finally planted my bean hyacinth seeds--I can't wait for them to overtake my back fence, winding their tendrils through the ivy and bursting purple and proud.

Then I had a reflexology massage. New-age-y, right? Well, I am in mid-life! It was delightful. And perfect. And it soothed my tingling neuropathy feet and reminded me that I am alive! I need to care for this crazy body and remind it good it has been to me.

Then I went shopping! I'm in a baking mood, so first some mini-loaf pans. Then some 3/4-length shirts--no short sleeves for me this summer with my PICC line. Great colors! Comfy and fun!

Now I think I'll go take me a nap. Rest up. I've got a big year ahead. Just you wait.

Day One, Check!

2011-05-09T23:16:00.002-04:00

This morning I started my fourth round of chemo.

Because I've felt relatively good over the last few weeks, and have ached for independence, I didn't ask anyone to give me a ride.

But on Sunday night my uncle, who's in town for the weekend with his wife at my cousin's house, and who can't stand to be alone himself, asked if he could come with me.

And then I realized... I was scared and a tiny bit discouraged and daunted at the start of a new round that may very well kick my butt.

So he came. and just sat there for two hours while I got pumped up with vincristine and danurubicin. And some serious steroids and zofran. We both mostly just worked away, reading the Post and working on our laptops. But just having him there with me meant the world. I wish I had a picture of the two of us.

Then I went and got the chest x-ray I was supposed to get last Friday. I have a nasty cough from my allergies that just sits there and worries me about bronchitis or infected fluid in my lungs. I guess chemo makes you a bit more susceptible. At any rate, I knew I had Diedra's wedding on Saturday and a crazy busy important day at church on Sunday, and I was so afraid they would want to admit me. So I took my cough medicine with codeine, did my nasal rinse, and prayed and prayed. And went in today. The tech had the radiologist send the results to my doctor, and I haven't heard anything from him, so... no news is good news, right?!? But Steve was there with me.

And I received such sweet texts of concern and offers to come with me today. I'm so grateful for my friends--and even a perfect stranger at church today who offered to come with and actually brought me chicken enchiladas and strawberry shortcake tonight. And we're backyard neighbors so we can be friends.

And tonight when I was just entering the "feeling sorry for myself" stage, I went on a walk with Marni, Lindi, and Noelle. It was just enough to keep my neuropathy feet moving and lungs burning and emotions at bay. How I love these women.

Onward!

I'll Show You...

2011-05-06T11:13:00.002-04:00

This morning I took a long, hot shower (keeping my cling wrap-wrapped arm as dry as possible), hoping to steam out my awful allergy cough (please don't let this turn into something worse). As I let the hot water dart over my body, I prayed and prayed that I would feel better and that I would make it through a very busy weekend.

And then I saw my old, trusty friend, the razor. I was told at the beginning of my cancer adventure I couldn't use a razor because of the danger of cutting myself (what am I, in 7th grade?). Friends, let me just tell you, if you didn't already know, that electric razors do not shave your legs well. At all. I've had stubbly legs since November, except for the time when I lost all hair on my legs. Stubbly hair isn't fun, especially when the weather is getting warmer and you have a wedding tomorrow.

So I defied them. I shaved. Long, delicious strokes, every single hair coming off. Oh boy do my legs feel smooth! Oh there is nothing like it!

It makes up for the stranger who the other day said to me, "Wow! You are brave to cut your hair that short! I would never dare do that!" To which I responded, "It's called chemo" and promptly started crying. She just turned around and walked away. I'll show you, too!

Cough, cough, sneeze, sneeze, BLOW

2011-05-02T13:59:00.003-04:00

A view of the old Cape Henry lighthouse at Fort Story, near Virginia Beach

These allergies are kicking my trash! I had no idea I could blow my nose so many times in one day. I'm doing everything I can think of--sinus rinses a couple of times a day, saline spray ALL the time, allegra-d, mucinex, robitussen. I just don't want my persistent post-nasal cough to aggravate my lungs and turn into some kind of bronchitis, putting off my chemo.

Is that weird that I don't want to put off my chemo? I just want to GET 'ER DONE!

That's right. Let's move past this chapter of my memoir already, ok?

Last week I met with my oncologist. Everything looks great. Yahoo! My hair is growing back (I even went bare-headed to stake conference this weekend! Oh the freedom! liberty!) and my blood counts are looking good. I successfully convinced him to wait a week before I start Round 4, the late intensification--back to IVs and shots and pills but no spinal taps. Hooray again!

In the meanwhile, time to press forward with a conference paper, Relief Society reorganization, and Diedra's wedding! Please don't let me have to blow my nose in the middle of that!

Everybody Needs a Laughing Place

2011-04-26T14:18:00.003-04:00

A laughing place, to go "Ho, ho!"

Take that frown, turn it upside down,

And you'll find yours, I know, ho ho!

I found my laughing place last weekend. A last minute trip to Virginia Beach turned out to be the best medicine for this allergy-infused chemo girl. After being duly warned by nurses about staying out of the sun, I wrapped myself in long linen pants and shirt and a floppy straw beach hat, with SPF 85.

It was cold and gray, so we went to the Virginia Aquarium and hung out in Norfolk. We played a lot of games and stayed up way too late. And we laughed and laughed and laughed. I had tears streaming down my face. My emotions were so closely entwined and so close to the surface that they quickly interchanged. It was crazy, but it felt so good to get that out!

Tomorrow: an appointment with Dr. Feigert to determine when to start the next intense round of chemo. Part of me wants to just git 'er done, and the other part wants to wait a week just to get through these crazy allergies (post nasal drip makes me nauseous!), my roommate's wedding (yahoo Diedra!), a ward split (a complete overhaul of visiting teaching!), and lovely spring weather.

Super Powers... ACTIVATE!

2011-04-17T20:34:00.003-04:00

This evening I went on a walk with Marni in the delightful, perfect spring air, bursting with blossoms and the smell of charcoal barbecues warming up all around our neighborhood. Oh it made me hungry. And then I saw it--a perfectly normal little two-door white Honda, with a sketch of Spider Man on the side.

I asked Marni what superpower she would paint on HER Honda if she HAD to paint one on. She wants Wonder Woman. I decided on Inspector Gadget (I believe he has super powers--Go-Go Gadget spring feet! Go-Go Gadget whirly helicopter head! Go-Go Gadget rubber band arms!). Oh the places we'd go!

Tonight Debbie and I were texting our weekly check-ins back and forth. She's due with her third baby in the next couple of weeks, and I, well, have cancer. We joke that we're both getting dumber by the day--I with my chemo brain and she with her prego brain. We're a good match.

As I expressed my concern that each chemo pill is making me dumber AND less fertile, Debbie made a new suggestion (and I quote): "It will probably super charge them and you'll have super powers!"

I love it. It's my new plan. My chemo is super charging me. It's not JUST killing my cancer. You just think my short-term memory is failing. In reality, I worked on a chapter that was due in November and it's in pretty good shape. And I have plans this week for my dissertation. Plans, my friends. And those eggs? Well they are being super charged to make one or two or three REALLY bright, darling, talented children. Just you wait.

And all that anxiety-energy that keeps me up at night? Well maybe I'll super charge that into some incredible PhD power and rip out my dissertation this summer. (my advisor is now rolling with laughter at the possibility)

It all comes down to this. I really believe that our greatest weaknesses can become our greatest strengths. I believe that deeply and fully. I believe it takes a lot of hard work and even more divine power. Grace.

I love the quote Janiece sent me tonight from Neal A. Maxwell, my fellow leukemia-super hero:

Her deprivation is like an excavation, the readying of a reservoir into which a generous God, one ... day, will pour the Malachi measure of compensatory blessings, “that there shall not be room enough to receive it.” (Mal. 3:10.)

Hair Update

2011-04-08T19:56:00.002-04:00

It's time again, friends. I know you've been waiting with baited breath to see how much my hair has grown... and now you know...

Unfortunately my doctor said it'll fall out with my late intensification round of chemo which will run in May and June. Also unfortunately my nurses said exposure to the sun will make my chemo-infused skin will turn it a weird, streaky color. Exciting!

At least I know my hair will grow back in, right?

Chemo Filter

2011-04-05T15:10:00.000-04:00

Yesterday I lost my filter. I blame it on chemo.

I went to a Look Good Feel Better workshop at the Cancer Resource Center at the hospital. It's a great program aimed to help women with cancer literally look good and feel better. They give you a makeup demonstration and free makeup and they show different ways to wear wigs and scarves. There was a lot of helpful information and they even had sheet cake for a 20-year anniversary celebration. I couldn't bear the thought of that much sugar and frosting, but it was a nice effort.

I think I was the youngest of the six cancer women there by at least 30 years. That, for some reason, made me feel a little feisty. And--I'll be honest--a little vulnerable and defensive that these are my peers. That I'm here, learning how to paint on eyebrows, especially when my eyebrows didn't fall out (for which I am eternally grateful). I didn't want to talk about hair falling out (mine obviously already has) or nausea (mine will return next month) or any of the discomforts of my life.

Then they showed us some creative head coverings--one with a pair of tights placed on your head and the legs wrapped around like a turban. My immediate thought was something along the lines of fear and discomfort at the thought of putting the crotch of a pair of tights on my head. My head is pretty vulnerable and I'm pretty particular about what touches what. Hey--I have cancer.

The lady kept talking about how she buys all this great stuff at thrift stores, including ratty wigs, shoulder pads, and tights. Now, don't get me wrong, I LOVE a good thrift store when I'm at my ultimate health, even then, with a big can of Lysol. But then when she told me if I wanted to try a pair of her cute tights-turban wig, my reaction?
"Uh, no. I don't really want a stranger's crotch on my head."

She looked at me, completely baffled, and said, "oh."

Why, oh why couldn't I just say "no, thank you"? I blame it on chemo killing my filter.

Two Days and Counting...

2011-03-28T11:19:00.002-04:00

Guess what, friends? Wonder of wonders, miracle of miracles... I've now gone 2 days without a headache. I'm not quite sure what to do with myself.

I think part of it came because of a little prayer. You see, I had somehow scheduled quite a busy day on Sunday: PEC before church, then I really wanted to be at church for all three hours because I hadn't been for a couple of weeks and Sue, my Relief Society counselor, was out of town (on a much needed break, bless her heart!), and I didn't want to leave Emily to fend for herself. Plus I just miss all my church peeps. Then I had a visit scheduled and a surprise birthday party and home teachers.

Now I was willing to negotiate, I told God. Emily was at the ready in case I couldn't make PEC or the new member class at church. I was willing to leave Relief Society right after opening exercises. I could cut the visit short, or skip the party.

But guess what? I managed it. All of it. And it made me feel a bit successful.

That and I checked the messages on my landline. My spinal fluid is clear. No additional worries there. PHEW!

So yes, it's true, I haven't taken a tylenol or an advil since Friday. Although my head did buzz and swirl at the birthday party yesterday--let's just say there were a LOT of kids in a small-ish room hyped up on birthday cake. Oh boy.

Guess what I'm NOT doing today?

2011-03-24T12:53:00.002-04:00

That's right. It's Thursday. And I'm NOT at Interventional Radiology at the hospital getting another spinal tap. Wahoo! To celebrate, sweet Laurel sent flowers.

I feel like I'm still recovering from the weekend. Yesterday I had cravings for random foods: pastries, hot dogs, mangoes, ice cream, and Tex Mex. I satisfied with some Baskin Robbins (thanks Sarah!), a kiwi mango ice pop at Dairy Godmother (oh YUM!), and some Baja Fresh (in that order). Still working through the headaches.

Yesterday a friend of my roommate Virginia offered the services of her housecleaner. She was here for four hours yesterday. WOW. I feel really really clean. It's amazing how you can consider yourself a clean person, and then cancer kicks your trash, and a few months pass, and then someone comes in and takes charge. It's awesome.

Land of the Living

2011-03-21T17:25:00.003-04:00

A nice spring view at Monticello back in 2009

And I'm back in the land of the living...

After a few days where I felt like I was in the Valley of the Shadow, I woke up this morning and actually brushed my teeth and went downstairs to eat breakfast. And I saw spring outside my window. The neighbors' tree suddenly burst into bloom sometime within the past four bed-ridden days.

Signs that you feel better:

You can brush your teeth without throwing up
You shower and put on a little bit of make up, even if you wear sweats and go back to bed
You eat at a table instead of in bed
You transition from Pedialite to Gatorade (Virginia made me choose between drinking Pedialite or going to the ER after I didn't eat or drink for 2 days. It tastes slightly better than children's cough medicine and is much better when diluted with water)
You think about responding to emails again... and blogging!

I think the hardest thing for me right now is patience. I haven't quite bounced back--it's a slower transition to get back to the lower-level I was at just a week ago. As a cancer survivor friend reminded me, it's especially hard because I felt so much better. I've been on both sides--the feeling junky and the thriving. And obviously I choose the thriving side. And while I don't always have that choice, at least I have the memory.

Maybe tomorrow I'll feel good enough to go on a walk around the block. Or make my bed. Or send some more emails. Maybe I'll be even better at managing my new headaches (it's much lower now and kind of in my ears in a weird way). But I'll figure it out. And if not, I'll just lay in bed and watch HGTV on my new digital converter. Ahhhhh...

P.S. Thank goodness for March Madness basketball, the greatest distraction of all...

You Look Different...

2011-03-17T21:13:00.002-04:00

Yesterday I stopped at the local Safeway. The cashier, one whom I had seen many times, particularly before my diagnosis, stared unabashedly at me. "You look different," she said.

"Well, back in November I was diagnosed with leukemia," I said, not able to look her in the face. "In fact, tomorrow I have a spinal tap."

"Oh, everything will come back clear. It's going to be fine." It was nice of her, but I think she really just didn't know what to say.

Meanwhile I walked to my car and cried. Of course I look different. I'm bald (well with slowly growing hair). I don't have that spring in my stop--I move quite slowly so I don't fall down. I'm slow. My life is completely different.

I was buying ingredients to make cookies for the cute nurses and dr giving me my last spinal tap today. I haven't baked since before. It took forever and ever. Cute LuAnn came to visit and helped with the last part. Thank goodness.

Last night I heard the disappointing news that my dear friend Laurel couldn't make it--a security breech and the Salt Lake City Airport prevented her from making a connection in Chicago and making it to DC to hang out with me for this last spinal tap. I had been overwhelmed with her desire and love and devotion to support me.

Thank goodness, Terry picked up and picked me up and sat with me and carried my cookies. It was another throw-upy day. I had Terry pull over twice, and I think twice I still ended up throwing up in her car (I learned my lesson with an empty plastic bag!). Even while throwing up at the hospital, Terry switched out my barf bins and found me a washcloth. The silly thing was that there was just nothing to throw up! They loaded me up with some serious ativan and fentonyl and I don't remember anything after that, between the spinal tap and restitching my PICC line suture.

I do remember waking up when the Dr. Washington came in to say that my spinal fluid had abnormal amounts of white blood cells. It could be an infection, or it could be from poking me so often, week after week.

And I came home and slept and slept and barfed and slept. No wonder I look different!

ERS

2011-03-15T14:28:00.004-04:00

A dear friend Jill shared this quote with me recently from another dear old friend, Eliza R. Snow:

It is a blessing to us that we, at times, are brought into circumstances which are calculated to bring into exercise every power and faculty which we possess. It is true, it may not seem very desirable for the time being, but it has a tendency to strengthen and develop our abilities and prepare us for greater usefulness.

Eliza Snow remarks, 18 February 1869
Minutes of the 28th Meeting and First Annual Meeting
of the Female Relief Society of the 17th Ward, S.L. City
Deseret News Weekly, 14 April 1869, p. 117

I love that. I feel like my experience right now brings into exercise every power and faculty I possess. Even my stomach muscles when I barf while driving. After this, I probably should have a six-pack.

Today when I had my PICC line dressing changed, the nurse noticed that one of the stitches holding it into my arm had come out (um, excuse me, how does that just come out? what happened to the part of my arm it was stitched to? where is it?), so I have to get the stitch replaced when I have my spinal tap on Thursday. My last spinal tap, if you were wondering. They just said to be careful that my PICC line doesn't come out. Can you imagine? This little tube that goes all the way up my arm all the way to my heart, just slipping out of my arm? SCARY! So I'm also exercising my arm power to keep that baby in.

Do you know what other power I'm exercising? My faith and hope. Faith in a much higher divine power. Hope in that divine power to carry me through this and beyond, to a life full of love and work and rest and peace.

And as Eliza says, this present life sure doesn't seem desirable a LOT of the time, but if I can strengthen all these weak parts of me, just you wait. Just you wait...

Unveiling the head

2011-03-13T17:25:00.004-04:00

But first, a question:

Say you have a horrible headache and you hold out at church as long as you can, but then just before Sunday School starts, you decide to go home before you burst into tears. What do you do if you're driving down King Street and you suddenly have to throw up? There is literally nowhere to pull over, and even if you did, you're the driver and you'd be opening your door and throwing up into traffic. Or some random driveway. The only alternative I could think of was to keep driving... and so I just threw up into my skirt. I cried. I laughed. I mean, what else do you do with the ridiculousness of your life?

No pictures of that event. But I do have pictures of my growing hair. It might make you throw up. I encourage you to use something other than your skirt.

I think this was 2 weeks ago...

Today...

The exciting news is... it's GROWING! Like spring! right?

Surprise!

2011-03-11T12:19:00.002-05:00

My spinal tap went surprisingly well yesterday. Hooray!

I love my doctor and nurses. I've become acquainted with everyone down there in interventional radiology. While I was in the waiting room yesterday morning (at o'dark thirty), a nurse whose name I don't know walked in and said, "Oh, Jenny! I was just thinking about you yesterday!" And my regular nurse, Tina, told me that no one has the same doctor every week, but Dr. Washington requests me every week. He always comes in early to see how much my hair has grown. Yesterday as I walked out, he said he can't wait to see my afro next week, with a pick stuck in it and everything. Then again, he also told me to dress like Sonny D for my last spinal tap. Any suggestions?

I came home, all ready to lay flat on my back and veg with my beloved HGTV. Unfortunately, my roommate forgot to tell me that starting yesterday, my TV needs a special digital box. That little surprise sort of threw me. I ended up watching some stuff on my lap top on my stomach, but then I got all hot and felt like I was getting a fever, and then I just got depressed that I need my TV because this is my life. I am so not a TV person. And yet I need my TV. Surprise!

I finally decided to take an ambien and go to bed. Sometimes it's just better to start over fresh, you know?

Coming up: Jenny bares her head and shows the growing hair on her noggin. Aren't you excited?!? It's DARK... surprise!

A Usable Past

2011-03-09T14:38:00.002-05:00

Those of you who know my dissertation topic know that I'm intrigued with the idea of a past--how we use the past to benefit us in the present. It also means we choose what we don't want to use--the unusable past.

The other day a dear friend emailed me with the hope that I forget the discomfort and headache of my cancer experience. I had never thought of that.

There's so much I want to remember: the love and support of so many dear friends and family.

And yet there's so much I want to forget. Like yesterday when I had such a raging headache that as I bent over to sort laundry on the floor of my closet, I ended up sitting on a pile of dirty clothes, leaning back against my Ikea dresser, crying because I was in a tailspin and I didn't think I could continue.

What do you choose to remember? What memories do you hold on to, that define you? What do you gladly forget?

Good news: with my headaches--I can switch off throughout the day between ibuprofen and acetaminophen. That TOTALLY cuts the pain.

A really great deal...

2011-03-09T14:33:00.003-05:00

One of my suave NYC roommates has made an extremely generous offer on her photog skills to help raise money for me. She's going to be in Pittsburgh, Philadelphia, D.C., NJ, NY, Boston, and then the Other Coast in June/July. Check out her explanation here.

I must say: one of my favorite memories of living with D'Arcy was a fall Sunday afternoon photo shoot we did in Central Park. So much fun.

Thanks, D'Arc.

How to Get Out of Bed

2011-03-07T18:59:00.002-05:00

So I'm getting crazy chemo headaches--the kind where I go into a tailspin when my head changes location--turning, bending, going up or down stairs. Tylenol helps, but it doesn't last long. Plus, this particular chemo pill that I'm taking causes high liver function, which also creates problems with Tylenol. Boo.

Last night I thought I'd just sleep through my headache. Not so. I was in and out of sleep for a couple of hours, and every time I moved my body, the pain in my head sort of reverberated in waves throughout my body. So around 3 am, I forced myself up (knowing the movement would be more tailspin) to take some stronger Tylenol.

When I woke up this morning, I did not want to get out of bed. Or move. I was afraid to, actually. I thought I might just stay in bed all day. After all, I may have overdone it yesterday with three full hours plus of church yesterday as well as another Relief Society visit in the evening. I was pretty ok with reading my new favorite book (The Hiding Place--I swear I read it years ago but I do not remember anything. And I love it. LOVE it.).

Let me just say a couple of things got me out of bed this morning:

A sweet email from Sara, who wanted to come visit later. We had a GREAT walk in the sun (and fully loaded on Tylenol).
A phone call from my oncologist's billing office. After filling out a bunch of forms and providing them with information about my awesome current financial status, they decided to overwrite my entire bill. I owe them $0! Oh my gosh! I told Vanessa on the phone (we've become friends over the months) that she just gave me a reason to get out of bed. She said, "You get out of bed, girl! You gotta celebrate!" Now... if my other peeps and providers can be as generous...
Lunch with Jen, my fellow PICC-line day-club friend. Her visit got me in the shower and made my bed AND emptied the dishwasher. We had salad and sandwiches. And a great visit.
A phone call from Jana Banana Cherry Hairy Pitts, one of my dearest junior high/high school friends. Oh she makes me laugh.

One day more!

A Single Streak of Green Inside

2011-03-05T13:34:00.002-05:00

I love the healing properties involved in gardening--in pruning, planting, pulling, nourishing, in seeds and water and sun and fresh air. I also love the musical Secret Garden, and this morning I had the words from the song "Wick" rolling through my head.

When a thing is wick, it has a life about it...
Somewhere there's a single streak of green inside it...

This morning Virginia and I tackled the jungle of our little back patio. We laughed to think about the two invalids of the house outside, pulling and tugging and raking. She's had a sinus infection all week and I, of course, am cancer girl (don't worry--we quarantined each other during her infectious phase. We don't share germs.). It was cloudy but about 50 degrees, so we put on our gardening clothes, found some gloves and garbage bags, and went to work.

When a thing is wick, it has a light about it
Maybe not a light that you can see.
But hiding down below a spark's asleep inside it,
Waiting for the right time to be seen.

I felt responsible for the out-of-control bean hyacinth vines that had taken over two fences. My dear grandmother sends me seeds from her garden every year, and I plant the little wrinkly black and white seeds along the back fence. This year they really took off and crowded out the entire back fence, even crawling up into the low-hanging limbs of the neighbor's apple tree. I loved those delicate purple blossoms. I love the deep green color and the wild life they filled my patio with last summer. And then I let their vines wither and die this fall and winter while my blood freaked out and created its very own lymphoblasts, slowly destroying everything in its path.

Well, the lymphoblasts are gone, and it was time for those darn dead vines to come down. I took to them with a vengeance (until I had to sit down and take a little breather), but down they came. Clean. Free. Gone.

Virginia attacked the flower beds and found growing tulips and hyacinths underneath all the leaves and vines and dead flowers from last season. I found a dead mum in a pot, and right as I started pulling it out, I found a little streak of green. Something was growing down in there, and it wasn't a weed. It was growing out of the old dead stalks. I didn't have the heart to uproot it, so I carefully cut off the dead stuff and put the pot in the sun, where it could grow to its heart's content.

It felt so good to be out there in the fresh air, working my hands and getting dirty. Oh I can't tell you. But I can tell you, spring is coming. It's a little deep in the ground this morning--the gray skies threaten to rain all day tomorrow. But it's a warmer breeze. It's coming. And it's bringing life and hope.

You clear away the dead parts,
So the tender buds can form,
Loosen up the earth,
And let the roots get warm.

Deep Breath

2011-03-04T18:08:00.002-05:00

Sometimes you just have to take a deep breath. In. Out. In. Out. Because sometimes that pause, that moment, helps you realize that you're alive. That you breathe. That sometimes that's most important. And the rest isn't that bad.

That's what I did yesterday. Spinal tap number 5. Two more to go.

And I didn't even cry until after I got home, took a nap, and talked to a lady on the phone from the hospital who called, concerned that I am running up a huge medical bill and my insurance has stopped covering me. In. Out. In. Out. I'm alive. I'm ok. I'll figure this out.

I took down her address and mailed a letter this morning with a formal request for financial assistance (which I thought I'd done in November).

In. Out. We're alive. It's ok.

Small Victories...

2011-03-01T12:51:00.002-05:00

Well this one is a big one: I met with my oncologist this morning and he gave me the good news that my spinal fluid remains clear and leukemia free. YAHOO!!!!

I'd begun to wonder over the past few days. I feel like my brain can't wrap around life very well. I haven't dealt with life's normal little glitches, not to mention the trauma and anxiety of weekly spinal taps, mounting medical bills, and just dealing emotionally and mentally with cancer. One crazy thought was that leukemia had spread. It hasn't! Don't worry about that any more!

Another small victory: as I drove into the parking garage to park for my appointment, a woman pulled out without looking and hit my car. Awesome. It's just a small dent in the bumper, but the thought of dealing with such business almost freaked me out. The good news is that it DIDN'T. I didn't get upset. I didn't cry. I'm not going crazy. Don't worry. I already took care of the details with my car insurance.

Now... if only Geico could give Aetna some pointers on customer service. Yesterday my health insurance claims rep was so confusing and ridiculous on the phone--she told me I shouldn't worry so much about all these random details, like multiple Explanations of Benefits for the same services, or trying to figure out separate occurrences, requiring a new diagnosis and new claims, or that I don't need to put together a spread sheet to keep track of all the claims and actual bills. Now that is all so over my poor, confused, chemo-brain-headachy head.

Dance Your Troubles Away

2011-02-25T14:54:00.002-05:00

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.

Here Comes the Sun

2011-02-23T15:45:00.002-05:00

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.

Pocketful of Sunshine

2011-02-21T11:58:00.003-05:00

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.

One Thing at a Time

2011-02-19T16:24:00.002-05:00

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.

Dear Friends,

2011-02-16T12:40:00.003-05:00

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!

Valentine Shout-Outs

2011-02-13T08:54:00.004-05:00

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.

Unfinished

2011-02-10T12:24:00.003-05:00

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.

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

2011-02-08T15:59:00.002-05:00

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.

Phew!

The End and the Beginning

2011-02-07T15:42:00.002-05:00

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.

Move over, Barry Bonds

2011-02-03T18:54:00.003-05:00

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.

Minimize the Damage

2011-01-31T22:00:00.003-05:00

One of my favorite lines from the elderly Lady Grantham of Downton Abbey: "When something bad happens, instead of asking why, we need to minimize the damage." Or something to that effect.

For more awesome Lady Grantham lines, see this story.

This needs to be my war cry.

I feel like I've been complaining a lot lately--and I know I have a lot of reason and that it's totally normal to be discouraged and even a little depressed. But I'm tired of it. I'm ready to minimize the damage.

It's like these crazy neupogen shots. The chemo of course kills everything, and the neupogen stokes up my bone marrow. But lately the aching of my bones has become much, much worse. Like it hurts to stand up. Tylenol helps for about an hour or two, but then sometimes some of the chemo affects my liver and I can't take tylenol.

But you know what helps? A sweet friend dropped off a heated mattress pad. Oh it is heaven for these aching bones. Minimize the damage.

And you know what else helps? 2 more days of chemo this round--tomorrow and Friday, with neupogen shots every day until my white blood cell count gets to 5 (today was 0.7). There's an end in site. Just get the darn thing done with. Minimize the damage.

And Coke Slurpees. Oh I love them. Thank you Noelle for lighting the way. They settle my stomach and it's so much easier to eat cold icy than warm spicy. Minimize the damage.

At the End of the Day

2011-01-29T10:41:00.004-05:00

Image taken from here. Africa. One day I'll go...

Sometimes at the end of the day all I have to show for myself is that it's one day over and that I get to go to bed. Ambien or ativan, take me away.

I've been a bit discouraged. I thought I knew what I was getting myself into with this repeated second round of chemo. And sure, the schedule has been the same, but I haven't had the same small surges of energy. I haven't felt any better; in fact, I've felt worse. Nausea, fatigue, lack of energy or desire to really do anything but nap and watch useless TV. I feel like a lump. I feel like the past three months have been a black hole--a waste of time and money. A LOT of money.

And that, I believe, is the problem. Unsubstantiated expectations. I didn't take into account that I started this second round tired already from the first half, with no break. My body feels like it's still breaking down; there has been no recovery and recouping time. So even with my excitement that on Tuesday my white blood cell count shot up from 0.2 to 3.4, I didn't expect it to drop by Friday back down to 0.4. And I thought my new blood would give me energy, but I think they gave me tired blood, because all I want to do is sleep. And NOT eat.

My only expectation is that there is an end of the day. An END.

But you know what comes with knowing there's an end of the day? That there's a new one coming. So even though I woke up at 5:00 am with a crushing sense of nausea due to yesterday's chemo, it also means it's one day closer to less nausea. Right? And one day closer to watching the last episode of Downton Abbey.

Image taken from here. Bali. One day I will travel again.

blood and geraniums

2011-01-26T19:59:00.004-05:00

Image taken from this website.

Last summer I visited my grandmother for a few days before and after a conference I had in Missouri in her neck of the woods. One day we bought a whole bunch of flowers and planted them in various pots and baskets all along her beautiful wrap-around porch. I still remember what joy I found in digging my hands into the soil and dirtying up my fingernails, in finding just the right spot for each pot or basket, and in watering those flowers, hoping they would thrive and provide my GranNomi with just the amount of color and life she needed in her rural hideaway. Every phone call throughout the summer would include the question: "How are the flowers doing?" Her response, every time, was that the red and white geraniums were blossoming the brightest and the best. Even with her extended time in Utah, and throughout the fall, those geraniums plugged along.

When I was diagnosed with leukemia in November, GranNomi emailed me every day. She sent me my dear Grandad's leather-bound hymnbook and sent me a hymn every day, hoping to strengthen my faith and hope. Oh how I felt both of them near me, from both sides of the veil. One day she emailed me with the news that those red and white geraniums were still blooming. And that she found great joy and blessing in the connection to her hope for my red and white blood cells.

Image taken from this website

Well my blood cell counts have risen and fallen dramatically with each injection of chemo and each neupogen shot. I've had a couple of crazy reactions to platelets and red blood cells, and then the neupogen shots, which boost my white blood cells, also cause my bones to ache. And oh how they ache. Two opposing powers.

Today I had another transfusion--two units of blood and platelets. I left for the hospital this morning at 7:30 (after yet another unfortunate barfing incident, this time safely in the bathroom!), and didn't get home until 4:30. It was a long day, with a LOT of Benadryl and steroids to prevent another reaction. So there was some good napping in there. Now my heart is pumping and my new blood is coursing through my veins. And I'm safely home, through the snow storm, watching American Idol.

Here's to hoping that my own bone marrow will start producing my own blood. And like those darn geraniums, blooming away, it will. Believe you me. Until then, I love that friends like Leslie donated blood today. Bless you.

Fellowship

2011-01-24T11:01:00.004-05:00

My LDS chapel on King Street, Alexandria, VA

All of you who know me, even a little bit, know that I'm LDS. My dissertation is based on Mormon women's history. I'm super active in my church and I talk about it and the people I associate with all the time. I love it. My membership and my beliefs make up a huge part of my identity and worldview.

Well, I've only been to little bits of church four times in the past three months. Understandably. I've been really sick, either in the hospital or home in bed. Or on the couch. Every week my home teachers have brought me the sacrament. I've maintained my calling as Relief Society president with the most active and loving counselors and committees. And dear ward members and others have literally flocked to my every need.

But.

I didn't realize how much I missed the fellowship of the Saints. Sure, I've listened to my favorite Mormon Tabernacle choir and BYU choir cds on my ipod. Their hymn arrangements are incredible. I've read some pretty great talks from the internet, and I've even watched some on DVD and listened to podcasts. And of course I've prayed and read my scriptures.

It's just not the same as actually singing hymns with the congregation, or listening to a talk from the pulpit or participating in an actual Sunday School or Relief Society lesson, or praying together with a common cause and saying amen. Together.

Yesterday I braved the cold and the germs. I armed myself with hand sanitizer and anti-nausea pills. I made arrangements for the Sampson boys to save me a seat in the front, and I slipped in right as sacrament meeting started, surrounded/blockaded by my healthy roommates. I sang, I prayed, I partook, I listened. And then I slipped out as soon as the meeting was over. I was there.

But more importantly, I felt the fellowship of my fellow Saints. I winked and waved at dear friends across the pews. I saw babies who have grown considerably over the past months. I listened to talks about sharing the yoke of Christ. I watched the sacrament passed by new 12-year-old deacons that have received the priesthood since I've been there. I noted new members of the ward and thrilled at the idea of belonging. I saw my dear bishop and felt his love and concern, not just for me, as I've certainly felt over the past months, but for every member of the Crystal City Ward.

One day I'll be more regular. I'll stay for all three hours. For now it's baby steps, depending on how I feel and what my counts are. And regardless of strict attendance, I know I belong. But I rejoice in the opportunity for actual fellowship.

Quantifying JennyReeder

2011-01-22T16:11:00.002-05:00

Raise your hand if you remember the number of the day pinball sketch from Sesame Street!

Ever since 5 November, I have felt like my life and identity have been measured by numbers.

Every blood draw, every encounter with any medical professional has involved a count of white/red blood cells and platelets, blood pressure, temperature, weight. The nutritionist looks at my protein levels. My liver has been functioning at a high level, according to my CMB (complete metabolic blood). This week my white blood cell count went from 3.5 on Monday (normal is 4-10), to 0.5 on Wednesday, to 0.2 on Friday. That means I have like seriously 2 white blood cells dancing around my entire body to protect me from infection. And every single time my temperature is taken, I pray. Any slight rise means an infection and admittance to the hospital.

I have a medical records number and a blood bank number, and every time I get any medication, I have to give my birth date.

Every day, even, is a number. Each chemo course is scheduled by drug and by the number of the day in the course--so each day is measured by what day it is in the treatment cycle. Today is day 12 of course 2B. I'm in the second course of treatment; the sixth course lasts until 24 months from diagnosis.

This past week I had an appointment with my oncologist, and I asked what my recurrence risk is and what my percentage of fertility are. 40% and 30% respectively. I don't like these kinds of numbers. On Tuesday those numbers actually sent me spiraling first to the toilet to barf, then to bed. And there I stayed all week as that chemo did it's job. Physically, but also emotionally.

I'm so quantified.

And yet.

Each day I have to remind myself that I am more than the numbers that quantify me. I have a mission in life! I have hope in my future! I believe in miracles! I have millions of friends--and my work in history has accorded me friends both living and dead!

How do you quantify courage? or faith? or love? You can't. It's just there or it isn't. And I get to decide.

As for that 30% number, I just have this to say:

A few letters

2011-01-21T22:45:00.002-05:00

Dear Methodist Church on Glebe and 16th,

I am so sorry. Your parking lot was the only available place--much better than poor dear Marni's car. I hope you can have compassion.

Dear Marni,

I'm so so so sorry. You were so sweet. Thank you.

Dear Lost Dog Cafe,

I still love your food. I just couldn't keep it down today.

Dear Ara-C,

I don't love you. I'm extremely happy to be done with you. You pretty much kill cancer (which is FINE by me) but you also kill the lining of my stomach. And it's not pretty. I know I will see another two weeks of you later in my next round (oh help), but I'm so so so glad to see you go for now. Peace out yo.

Lift up the hands which hang down, and the feeble knees

2011-01-19T19:05:00.002-05:00

Hebrews 12:12
Last night we had to take a picture of our Relief Society presidency. It was due on 31 December as part of our auxiliary history to send to the annals of the Church in Salt Lake City (oh how I have come to love those annals on my previous monthly trips to do research/contract work). So we're a little late with the official portrait of our presidency. And a little unorthodox.

Only there's a lot you can't see in this picture. Beyond our classic Sunday attire (yes I'm in purple pjs with my green sweater) and the rest are in jeans and khakis and fuzzy socks--we do not dress like this for Sunday, I promise), you see our perfectly coiffed Relief Society hairstyles. No--this is solidarity, sisters. Everyone chose a hat from my hat rack.

But the thing about these women is this: they truly know the meaning behind lifting hanging hands and strengthening feeble knees. They have filled every Relief Society need while I've been literally flat in bed, as I have been the past three days. They have attended all meetings, visited the needy & downtrodden, fed the hungry, met the new move-ins, coordinated and invited and planned and carried out. I've experienced it firsthand in my absence, because they have done it for me, too: comforted, fed, visited, planned, coordinated for me. Literally yesterday as I hit an emotional and physical bottom, they lifted my hanging hands and strengthened my feeble knees.

So take that, Salt Lake City. Not your picture-perfect Relief Society presidency, but one that provides perfect relief.

I have a dream...

2011-01-17T12:46:00.010-05:00

Arches National Park, August 2010

Inspired by MLK's dream of hope, I choose to look past my headach-y, nauseated, nap-all-the-day-long, bitter cold outside. Here is what I'm dreaming of:

Labor Day, 2008

OBX. I love you. I crave your warmth and sea peace. And my tan when I'm there. If only you can promise not to get sand in my PICC line, can I come have chemo on your soothing shores?

My dissertation. I think I ran away from you for a long time because you were so unwieldy and at large, but now that I look at these pictures of my summer research, I feel you, deep inside of me. You are there, stronger than my impure blood, pulsating and waiting for my body to get well enough to shape and mold you. Oh my dears. I have so many dreams for you. Hold on. I'll be here. So will you.

Nauvoo Relief Society Minutebook, chapter 1
Relief Society banners, chapter 5
Relief Society halls, chapter 4

My sisters/grandmothers/great-grandmothers. I came from some good blood somewhere... and I have so many dreams for the future... so this dream is for my eggs, wherever you are and whatever shape you're in. Chemo can't kill ALL of you--we are too strong for that. We have so many things to do...

Jenny, Annie, Lisa, and various dolls

My grandmother--"GranNomi"--Naomi Foster Goodman
My great-grandmother "Granna"--Hattie Esther Williamson Foster

links in a chain

2011-01-15T13:24:00.004-05:00

Some days it's all you can do to survive.

Those are the days when your biggest success is taking a link off the chain. And that's a big success, people.
28 days. 4 done. 4 links gone.
Thank you for the beautiful fabric chain, Janiece. Genius.

Put your left foot in, put your left foot out

2011-01-13T17:07:00.004-05:00

Image taken from here.

Today I feel like I'm living the hokey pokey. I'm not sure why, but it's just what I thought of.

I think it's the up and down, pass it around. Oh wait--that's another song. I'm getting my songs mixed up. Chemo-brain, I tell you.

My white blood cell counts go up and down, all around. And I am left to wait. Until blood results come back. Wait until the oncologist decides if I should go ahead with the chemo for the day. Wait for the chemo to be mixed. Then wait for the shot. That's my life these days--the pokey (shot) in the hokey (the hospital).

Then come home, load up on anti-nausea drugs, nap, and watch Gilmore Girls reruns.

In the news: my blood work reveals that my liver is functioning high (does that mean overachieving? or working too hard?), which means no tylenol or herbal supplements, which is a slight problem with the cramps and headaches I've been getting with my chemo. Heated corn bags are awesome, and they keep me warm, but it's not the same. And because of kidney problems when I was first admitted to the hospital in November means no more Advil for the whole rest of my mortal life. So if you have any ideas about how to survive, just send them my way. And a crazy rash on my trunk, which is most assuredly NOT shingles (like one nurse who hadn't even seen me was sure I had). Thank goodness for the small things, right?

Shake it all around--that's what it's all about!

Oh the inexpressible comfort...

2011-01-11T17:24:00.006-05:00

... of feeling safe with a person.

I must say that I feel like I'm surviving--nay, riding--on the wave of hope entirely built by dear friends and loved ones. Because I surely on my own could not press forward on my own accord.

Yesterday was spinal tap #2. It was fine--again, thank goodness for happy drugs and really sweet nurses. But once I got home and took into account that this is my life and that I really really really don't like the looks of my immediate future, and that I'm bald, let's just say it was a teary afternoon. I know what I'm getting myself into. And it's not pretty.

Today I had my long day of chemo, but after waiting for an hour to get my blood results, and seeing how low my white blood cell count has dropped and then waiting another hour for the oncologist to approve chemo, and then waiting an hour for the chemo to be mixed, and then six hours of chemo that makes me sick, I just don't know. At least I got steroids, which gives me an appetite for another two days.

Then I came home today and there in the mail was a lovely package. From Hope. Full of Hope: hope lives here. And hope only lives here, in my house, because of the incredibly hopeful people whose love surrounds me and fills me and gives me life right now when I can't seem to find it myself.

Like Marni, who sat with me all day long today, working away on her laptop. We rarely even talked--I mostly slept. But she was there. And because she was there I didn't lose it in my wait.

And Lauren, who brought over breakfast for dinner last night, and sat and listened to me, then bore her soul out to me and I recognized that other people have souls that have needs besides my own.

And Emily, who again sat with me yesterday all through my spinal tap experience, and fed me chicken nuggets and fries again while I lay flat on my back, and watched hours of HGTV with me in that tiny Intravenous Radiology room.

And Yvette, dear Yvette, who did my Sunday extremely scary laundry and the bathroom rug. Bless her heart. Heaps of blessings. And on that note, Krysta, who pulled her car over some weeks ago to let me throw up on the side of the road.

And Julie, Megan, and Rachel, who braved their own bouts of pneumonia to come over and dance outside my front door one frigid night (no germs inside!), just so I knew they can still shake their bodies. (and they can. They can.)

And Emily, who brought me bravery, and Stace and Jana and Amy who email me the most encouraging emails and don't expect replies, and Laurel who doubles her prayers, and all those who call and comment and fill me. I don't even know who they all are, but I know they are there, because this is really beyond and outside of me.

And those out-of-town visitors--Deb and Janiece and Jessica and my mom and my grandmother and my cousin and my sisters.

thank you.

spoken too soon...

2011-01-09T19:54:00.001-05:00

Bad night... bad morning... and I had such high hopes for today... let's just say that my spinal tap tomorrow will probably make for a better day than today has been... I hope!

Saturday is a Special Day...

2011-01-08T22:03:00.003-05:00

So I got some new blood on Thursday. Literally. It was necessary, like how you get out of breath just standing up and walking across the room, and your heart is pumping like crazy because it's working extra hard to pump less blood. All of that calls for 2 units.

Question: when you're low on blood, where does it go? Does it just dissolve into your internal organs?

Unfortunately I had a little reaction about 20 minutes into the first unit: hives. Everywhere. Which called for a break and some extra benadryl and steroids. Sweet. Second unit went fine. Plus my chemo yesterday which requires steroids and ativan to prevent a reaction--let's just say there are a lot of steroids in my system.

Steroids on Jenny Reeder = rosy cheeks, rapid heart beat, a seriously huge appetite, and a lot of energy (relatively speaking!). It's a good thing, because I finished chemo round 2A on Friday and I start 2B--the exact repeat--on Monday. And this time I know exactly what I'm getting myself into: a couple of weeks of lack of appetite, some serious nausea, and daily headaches. Bring it on. Starting Monday with the spinal tap.

So seeing as today is Saturday, a special day, the day we get ready for Sunday, and the fact that I have new blood and a little bit of energy and white blood cells, I took full advantage. I did some yoga, I ran a few errands (got a new hat rack and some socks to cover my dangling PICC line on my arm), I went to lunch with Marni, I cleaned my bathroom, and I did some laundry. And I took a nap. And I'm exhausted.

But I think I'm ready. I hope.

We Love Jenny Auction

2011-01-06T08:29:00.001-05:00

I just wanted to spread the word about an upcoming online auction we are having for Jenny to help raise money for her medical and housing expenses! (Disclaimer: Jenny is very, very grateful for all the support everyone has given her and she doesn't want anyone to feel AT ALL obligated to participate! This wasn't her idea and she wouldn't push it on anyone! Whew, now that that's out of the way...)

For the auction, you can donate items and/or bid on items and all of the proceeds will go to Jenny's paypal account. The auction will be held on February 14th from 9am EST to 10pm EST at http://welovejennyauction.blogspot.com/ (more details on the blog if you have any questions). You bid by leaving a comment on the post featuring the item you want.

We're modeling the auction after the Bloggers Give Back Project, so check out their blog if you'd like an idea of what to expect.

If you'd like to donate an item for auction, check out the guidelines here.

Again, no pressure to participate! But we think it will be fun for those who decide to join us.

-The WLJ Team

neutropenic no more!

2011-01-06T01:00:00.006-05:00

so i'm now back home again....alas. very sad to leave miss jenny, but i'm posting once more because today there was reason to celebrate! though jenny was a little out of breath this morning as she and jessica took down her christmas tree, she got more blood results today and.....white blood cells are at 2.3 (woo hoo!) and she is not neutropenic any more! now she can really enjoy the lovely just bloomed lilies from randall.

she met with her doctor today--her oncologist who calls her his adorable patient--though never to her face. (i like him.) she will start her next round of chemo immediately (with spinal taps...eh.) and then it is one more month of crappy chemo and then on to more manageable rounds. woo hoo! forward and onward.

her heart has been racing a bit--unfortunately not for any good reasons. between that and the frequent losing her breath jenny will get more blood tomorrow. much better that way. the heart racing also means that jenny needs to drink more water! jenny is working her way through her gatorade stash.

and the nurse also reminded jenny (and all of us that get to see her) to use hand sanitizer again and again. and again.

jessica and i loved our time with jenny in the last week. LOVED. and if any of you have wondered about jenny's now bare head, we have to say that it is really quite perfect. i think very few of our pates would be quite so perfectly bald...or wear the very cute wig quite as well.

jenny drink your water!

loves.

ativan take me away....

2011-01-04T22:27:00.007-05:00

hi again. today jenny and i went to the lovely infusion center at the virginia hospital center for jenny's chemo treatment. alas, before any sort of chemo treatment could begin jenny got her blood report. white blood cells were at 0.6 (aka almost absolutely nothing--down from 1.7 last week....eh) and neutrophils were at 0.3. not good. not good at all.

and then it took them 2 hours to decide whether or not she could get chemo. sitting around is a significant part of jenny's life now and sitting around and feeling crappy is not a fun combination.

so i went to the lost dog cafe to get sandwiches....and when i returned someone was....hmmm....perhaps a little spacey. somehow i missed the ativan dispersal. she eagerly ate her falcon sandwich (very good as was the turkey rueben) and really only spilled a little bit. but now it seems the several couple of hours are pretty fuzzy for jenny. she talked, she napped, and ate her whole sandwich. the elspar shot that generally burns her butt was diluted today and much more comfortable even though she had to be stuck twice because there was twice as much. (lamentably we have no photographic evidence of said shot.) then a bit more through her IV and jenny could head home.

it was quite miraculous we made it home since i had no idea how to get there. jenny somehow woke up just in time to tell me when to turn. (she no longer remembers any of this.) she went up the stairs and was gone for the rest of the afternoon. gone.

ativan makes everything better. especially dreams. but i won't talk about that...

regrettably jessica and i will head back west manana....and leave jenny to all of the wonderful people who are doing so much to help her. i'm glad we could be here for a few days, but i leave confident that she is well taken care of and i still hope to come back soon.

we love jennyreeder!

we heart the carlyle

2011-01-03T20:27:00.009-05:00

thanks to jenny i, janiece (the one who can't take a photo with her eyes open to save her life these days), get to contribute a bit tonight for the first time. jessica and i have been here since friday and we are loving our time with jenny. we had a fabulous low-key NYE with zpizza, virgina's lovely array of chips and dips, and jenny stayed up until midnight. saturday i attempted a re-creation of the liege waffles from bruges (only 5 million calories a piece). we all witnessed the wig's coming out day and jenny's beautiful lesson on sunday; and topped off sunday with jessica's fabulous island pork with coconut rice and a lovely group of friends. after a lot of organizing, the hospital for a shot, and a first-rate nap today, jenny felt good enough to go out. so we had dinner at the carlyle and jenny drove! it was jenny's first drive so i had to document a bit (to mauri's chagrin). jenny's neuropathy in her feet has subsided a bit and she chauffeured us to the carlyle brilliantly (that is without running into any stray roadsigns or people despite the temptation of points she would earn with a free-pass excuse). at the carlyle jenny had chicken palliard with roasted red peppers, mushrooms, angel hair pasta and this amazing brown butter sauce...mmm....even if she had to pick out the arugula. the wig lasted just until we got back into the car when she donned a much warmer scarf. and now we're capping off the night with the second half of north & south (the british one, not the civil war one).

we love jennyreeder!

p.s. if jenny looks a little shiney in the last photo this is not a side effect of the chemo....she was all lathered up with her super moisturizer.

Be Still and Know That I Am God

2011-01-03T10:21:00.000-05:00

Jenny has been sneaking into church lately, which is hard to do because that building is so crowded! But she's good at it. One day I was lucky to spot her wearing a sassy red hat. So fun. But yesterday, I spotted her with hair! She shared with us that it was her wig debut. She said it felt so fake. But to us it looked very real and great. She looked amazing. I really had expected to see Jenny look more weary and it was wonderful to see that she looked so healthy!

And then she came to Relief Society. We were all so excited to have her there, because she is the president of this local church women's group, and we've missed her so! And we were even more excited that she was able to teach our lesson! She chose a beautiful theme from Psalms 46:10, "Be still, and know that I am God." Many in the group shared thoughts about turning off the noise in our lives to be able to have quiet times to reflect on our relationship with God. It was wonderful to hear some of Jenny's personal experiences with Leukemia and to see how it has given her time to be still and reflect on who God is and how he can help her in her life and with her struggles. She mentioned that she has especially learned how to ask God for specific blessings that can help her get through a treatment or a day.

One of the things I took from her lesson is that I tend to complain about my little struggles and I quite often let them get me down. Seeing Jenny talk so positively about her big struggles made me realize that I need to be more positive and use even my little struggles as ways to grow. This is why Jenny is our spiritual leader, to teach us these great things. We all look up to you! Jenny, thank you for teaching us this lesson and especially for teaching us with your life example!

My New Year's Hope

2011-01-01T18:53:00.001-05:00

By John O'Donohue, sent to me from my old, dear high school friend, Lael: "To Bless the Space Between Us"

On the day when
The weight deadens
On your shoulders
And you stumble,
May the clay dance
To balance you.
And when your eyes
Freeze behind
The gray window
And the ghost of loss gets in to you,
May a flock of colors,
Indigo, red, green,
and azure blue
Come to awaken in you
A meadow of delight.
When the canvas frays
In the curragh of thought
And a stain of ocean
Blackens beneath you,
May there come across the waters
A path of yellow moonlight
To bring you safely home.
May the nourishment of the earth be yours,
May the clarity of light be yours,
May the fluency of the ocean be yours,
May the protection of the ancestors be yours.
And so, may a slow
Wind work these words
Of love around you, an invisible cloak
To mind your life.

I feel this love and support and comfort, even on the days of my greatest ineptness and inability. I feel this cloak of love from you all cover my mind and my heart and I embrace it and wear it.

I rejoice in the small pleasures--today I wore jeans for the first time! I also took a 3-hour nap, one of those coma-hit-by-a-train naps where you can sense things are going on around you but you have no ability to participate in the present. And you enjoy it.

Plus Jessica and Janiece are here. Oh my. Dear friends fill my heart.

And, for the record, I totally survived Friday's chemo--the one I was really anxious about because of the anaphylactic reaction last time. This time was in the form of a shot with plenty of steroid and anti-nausea premeds. It sure burned going in, and the ativan totally snowed me, but I slept it off and am alive! No pictures of puffy red steroid cheeks.

After All, the Show Must Go On

2010-12-30T12:30:00.005-05:00

You know, I think it's the every day-ness of life that sometimes makes it drudgery. The part about getting up and going through the same motions. For me, that means waking up, taking meds, drinking as much water and gatorade as I can to stay hydrated and flush my kidneys, wrapping my PICC-line in saran wrap to take a shower, freezing when I get out, deciding if it's a sweats day or a real clothes day.

Perhaps it's the anticipation of knowing how certain chemo treatments or meds or doctors appointments (constant waiting!) will turn out--that my mercaptopurine will cause a splitting headache about three hours after I take it, or that the asparaginase will cause some kind of reaction. And knowing that I'll have to go get blood drawn, and it'll take an hour to get the results, and that I'll have to walk all the way from the outpatient lab to the doctor's office then to the outpatient infusion center. All those steps down those hallways with the crazy random yellow hospital linoleum.

And the unexpected things: like when sweet nurse Cathy calls from the 8th floor where I was Monday night just to see how I'm doing, and to assure me that with the proper pre-meds I probably won't have the same reaction to asparaginase tomorrow and that I shouldn't freak out. Or when I get a pair of these in the mail (my cold feet thank you Heather & family!).
But it's these little bits of knowledge that help me figure out how to make it work. Why not take mercaptopurine at night--and pre-med with some extra strength tylenol? How about expecting that my lab results will require some platelets, like they did yesterday, and always take a book (ALMOST done with Founding Mothers, thank you Liz & Trent!)?

It's those small, tender mercies that help me find the ability myself to shake things up a little bit. What if I feel like making my bed today and taking a nap on the couch instead? What if I feel a burst of energy and am able to respond to a bunch of emails (and then the darn people email me back and I have even MORE to catch up on!)? And what if I don't feel good and just need a nap? Or I can't think of anything I could possibly stomach--and that's ok? It's ok. It really is. The monotony, the daily-ness, and the unexpected.

After all, the show must go on.

Goodbye yesterday to Mom & GranNomi. You were so sweet and patient and kind to have the most boring Christmas ever with me and to take such good care of me. And thank you roommates for coming home and helping me feel normal again.

Home again, home again, jiggety jigg

2010-12-28T16:47:00.002-05:00

After a short (well long because I did NOT sleep) night in the hospital, I am home. Home again, home again, jiggety jigg. In my own bed. Phew!

As much as I grumbled yesterday when the nurses downstairs in outpatient infusion insisted on admitting me because of my low counts, and the nurses upstairs were sure I'd be discharged after I got my precious and energizing blood, the on-call oncologist voted to keep me overnight to administer today's chemo upstairs.

Well done, Dr. Rodriguez. Even if I complained about sleeping another night on that rubber mattress and facing the thought of hospital food right when my appetite was making its way back. It paid off today when I had a major reaction to the chemo they would have given me downstairs this morning. Instead, my primary oncologist, Dr. Feigert, was on the 8th floor, and the two very best chemo nurses immediately jumped on and saved me with an emergency dose of steroids and ativan.

Thank goodness, because I could NOT breathe and I thought I was going to die.

But I am alive to tell the tale. And I'm home in my own bed. And we have a plan for that same chemo treatment on Friday morning (premed with steroids and ativan).

Tender mercies all around, friends. I had an added dose of humility and gratitude for being in the right place at the right time, for capable medical hands and meds, and for a renewed determination to rise up.

And I still loved the breeze I felt when I was rolled out of the hospital again!

back at it

2010-12-27T14:03:00.002-05:00

Jenny has been admitted back into the hospital. Her Neutrophyl count dropped to zero, meaning she has no white blood cells and nothing to stop infection. The good news is hopefully she will only have to be there overnight and can come home after tomorrows chemo treatment. As along as she doesn't have a fever, which she hasn't had in over a month. So keep her in your prayers, and as always calls and (pre-approved)visits are appreciated. We love you Jenny keep those spirtis up and think good white cell growing thoughts!

Yahoo Dooray

2010-12-26T15:42:00.002-05:00

What a Christmas!

For a while there I thought I might have to spend it back in the hospital... my white blood cell count dropped from 11.2 to 1.1 (normal is 4-10), and I'm back to being neutropenic, which means highly susceptible to infection. I've had some pretty yucky chemo side effects--nausea, no appetite, severe headaches, fatigue.

BUT... nothing that a little lovin' from Mom and GranNomi couldn't handle! It's been the most relaxed Christmas I've ever had. We would play a round of dominoes (as pictured above), then I would go take a nap before the next round. We would watch a movie, then take another nap. We opened some presents, then took a nap. Seriously. A round of Skipbo from the couch, then another nap.

The best part was Christmas dinner! Here's what you have for Christmas dinner when there are only three of you and one of you (you guess which one) has had some recent stomach issues (yes, that's me in the pic above eating Indian food because it sounded good. No it didn't last in my tummy): rotisserie chicken (we love Costco); 1 sweet potato, split three ways; mashed potatoes; steamed veggies; jello salad; rolls. I ate for about five minutes, then adjourned to the couch so I wouldn't have to see and smell food. But it was so good and it stayed down. Yahoo!

Thank goodness for family. And for doing absolutely nothing except keeping food down. Thank goodness for wonderful gifts and friends (you London girls--I loved that package!). Thank goodness for not having to go to the hospital--I'm done with the awful Ara-C chemo shots (yes, I have to be there at 7:30 tomorrow morning for a four-hour blood transfusion).

And thank goodness for the true meaning of Christmas. My favorite Christmas message this year is an old one from Jeffrey R. Holland: the story of the birth of Jesus Christ is one of intense poverty. Not only was there no room for Joseph and Mary in the inn, but this was "a night devoid of tinsel or wrapping or goods of this world. Only when we see that single, sacred, unadorned object of our devotion--the Babe of Bethlehem--will we know." Mary and Joseph did the best they could with their circumstances. And from the beginning, Christ learned how to "descend beneath every human pain and disappointment. He would do so to help those who also felt they had been born without advantage." We know that soon after, angels heralded the news of the birth to shepherds, who came quickly to bless and worship the babe, and that wise men came bearing gifts. The hope and promise of triumph holds greater significance as I have come to understand the pure need for grace and divine assistance in the most impoverished moments of my life.

Grow!

2010-12-22T21:02:00.003-05:00

This image was on the cover of the Economist, 9 October 2010. I love the headline ("Grow, dammit, grow!). Sorry if that's offensive. I think a lot of stuff in my life is offensive right now.

That encapsulates how I feel right now. The command form. I wish I could dictate so many different things. Eat. Don't hurt. Get some energy. Get stuff done. Get out of bed.

And of course, I wish my hair would grow. It actually is. It's peach-fuzzy right now. I had a patch of dark hair in the back, like a reverse bald spot, but it rubbed off, just like a newborn baby's hair. Now it's growing in and it itches. But. It'll fall out again--probably starting next week, based on the chemo schedule. My head just gets so cold that I keep it covered. I even sleep in my Northface polar fleece hat with underarmor. Love it.

Today I went in for my chemo shot, and I just hurt all over. I'm dizzy and my head pounds--all side effects of zofran so I don't have nausea from my chemo. We stopped for lunch at the snack bar before my next appointment. And I sat at that table and cried. My panino was gross, I dropped a penny at the cash register and my head was swimming as I bent over to pick it up (why did I think I needed to retrieve it?!?), and I had to go to the bathroom and the closest one was a long ways away. And there was a creepy guy who kept looking at me. Jealous of my head, I bet. Then my gyno appointment ran slow and I didn't think I was going to make it in that waiting room. But my sweet doctor came when she heard I wasn't feeling well and put me in a room so I could lay down and gave me a hug. I have the most amazing medical team ever. My chemo nurse today--the sweet Irish woman--gave me a big hug, too.

I hate that chemo kicks my butt. I hate that my days are so inconsistent. I love that I can come home and sleep. I love sleep. I love my bed. I love my neckwarmer. I love my dear friends and nurses and doctors. And now I'm going to sleep, dammit, sleep.

Good News Minute

2010-12-20T14:55:00.002-05:00

This just in:

cue reprise from Wicked...

Final results from last week's spinal tap are clear! No leukemia in my brain! Hooray!

Great news after a long, yucky weekend of nausea and no appetite and no energy.

It was exciting enough that I ate the doughnut MB brought me for my ride home today. And I love that he sopped the car so we could say a prayer of gratitude.

This good news fuels me for another week of chemo and preventative zofran! Take that, you!

The Grateful Game

2010-12-18T14:44:00.002-05:00

Some days you have to play the Grateful Game just to stay on top. First, two things about gratitude from our own dear President Monson:

Sincerely giving thanks not only helps us recognize our blessings, but it also unlocks the door of heaven and helps us feel God's love.
If we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given.

So here goes.

I am grateful for the kind, wonderful people who give me rides to my appointments and wait with me while I navigate my full-time job of waiting. Today BD picked me up with a ginger ale (perfect for my rocking stomach) and some Hershey kisses (couldn't quite stomach them). Yesterday JB danced while I got a shot in my booty. I wish I could list all of them--these wonderful people. I have chemo-induced neuropathy in my toes which sort of scares me from driving safely. That and I'm just so tired that my reflexes are pretty bad. So safety first!
I am grateful for people that bring me food. AS just brought me fajitas from Rio Grande--and I ate one! It's lasted a whole 30 minutes and counting! YM brought some Venezuelan deliciousness and made me eat before my regrettable Thursday chemo (which produced a bout of nausea and no appetite since then!). SB brought chicken noodle soup yesterday and crackers, always perfect for such occasions. And my sweet roommates have catered me with popsicles and potato chips--hey, you go with what you can stomach, right? And so so so many other treats and meals from so many people. Thank you.
I am grateful for the people that come visit. Yesterday MCS came and brought her violin. It was so beautiful--and reminded me of my Grandad (and uncle Steve and cousin Arian) and just soothed my soul. The other might PP came and cooked dinner, then seriously cleaned my room. It feels so uncluttered and clean now. Then she rubbed my feet! Yesterday MA came and sat downstairs while I showered so I wouldn't miss the Fed-Ex guy. I could go on and on and on. I so appreciate these kind visits. Every day someone calls me to make sure I'm good.
Hats! People have sent me the GREATEST hats ever! Oh I love them! I have beanies and knitted hats and fancy Sunday hats with feathers and bling. I have Brittney Spears hats and scarves and my bald, cold head thanks you. I feel so covered--both physically and emotionally. I can't explain what that means to me and my very vulnerable head. For some reason my head has been one of the hardest parts of this experience.
I am grateful for books. People have sent old classics and new favorites. I have a stack of reading material--and I am so so so grateful for it. From spy girl detectives to Pulitzer Prize winners to C.S. Lewis to church books. I'm covered. I don't always feel like reading, but sometimes reading is the only thing I can do. It's the perfect escape. And the magazines! Thanks, friends.
I am grateful for gifts of money. I have a really hard time wrapping my head around the generosity of so many people in so many different situations. Thank you. Thank you to the E family and the B family for sharing your Christmas with me. Thank you to the anonymous people. Thank you SB and SS for the Delta miles so my mom and grandmother could come for Christmas next week. Thank you for the countless people who send checks and cash. I can't express my gratitude--I just feel so taken care of. And so indebted. Thank you. I can handle the prescriptions and the gas and the food (ok, so I haven't been buying too much but I will the second I can think of something!), the rent and the bills. This is a whole new life for me.
Thank you for the pajamas and lounge wear and socks. I think I have put on real pants four times in the past six weeks, and a skirt three times. And it was great to feel like a real person. But there is nothing like feeling warm and comfortable.
And the quilts! I don't know what to say! Thank you JJ, JB, NS, AP, MR, RA. You pulled together a work of art in a matter of days and I love the bright orange and cheery green. Thank you LBC and AUS for the Union Jack delight--London Girls ARE forever. Thank you DW for the brown and yellow Ohio lovelies. Thank you JPH for the patriotic stripes. You have lifted my spirits and warmed my body. Thank you, ARH, for sending our fave family blanket. I know I need to upload pictures, but I just don't have the energy right now.
Thank you for all the cards and emails and letters and phone calls and facebook messages and IMs and texts, for the sweet thoughts and uplifting inspiration. From the sister missionaries to the printed talks to the mix cds. I so wish I had the energy to respond to each and every one. It drives me nuts. Please know I read each and every one and feel your support and love. Thank you.
Thank you VA for the beautiful Christmas nativity! Oh your work is so exquisite! Check it out here. I love it. It makes me shine.

I know there are things and people I have forgotten. I do, after all, have chemo-brain. But I have felt your love and prayers--you have fed me and covered me and warmed me and delivered me. I am so blessed. And I feel so indebted. And I feel to commit myself to feeding and covering, warming and delivering for the rest of the long life I have ahead of me.

All that he requires of you is to keep his commandments; and he has promised you that if ye would keep his commandments ye should prosper in the land; and he never doth vary from that which he hath said: therefore, if ye do keep his commandments he doth bless you and prosper you.

And now, in the first place, he hath created you, and granted unto you your lives, for which ye are indebted unto him.

And secondly, he doth require that ye should do as he hath commanded you; for which if ye do, he doth immediately bless you; and therefore he hath paid you. And ye are still indebted unto him, and are, and will be, forever and ever. (Mosiah 2:22-24)

Cancer is a Full-time Job

2010-12-16T18:20:00.002-05:00

Who knew? Seriously. It takes everything out of me. Literally. You can imagine what that means.

Today I had my blood drawn, then wait for the results, then an appointment with my oncologist. He's still waiting on one more test result from the spinal tap, but he said it looks clear so far. He's going to the Caribbean tomorrow (and he so deserves it. I told him to spend one minute in the sun for me.), so I'll have to ask the on-call dr. to read me the results tomorrow.

Then I had to sort through a prescription that I was supposed to start on Tuesday. It costs a lot of money, and because I've already hit my prescription limit on my insurance, and I'll have to take this drug for basically the next two years, I have an amazing prescription-nurse who has been working since Thursday to find some prescription program to pay for it. We thought she found one, but it panned out. Then another one panned out today (because I'm a full-time student. Explain that!), which is when I started crying, while I was on the phone with the Arlington Free Clinic while sitting in her office. The nurse started crying too--she was so frustrated! The lady on the phone started crying, too. It was awful. At that point I was ready to give my first-born child and just pay for the stupid prescription, when my sweet nurse found another low-cost program that is shipping the meds to me tomorrow. We all cried again and then it was off to my next step: the chemo shot.

You would think when I'm scheduled for a chemo shot, that's easy, right? Well, they can't order the chemo until I get there. And today there happened to be a million department holiday parties all over the hospital, and apparently a meeting for the pharmacists. Now my pharmacist friend explained to me the other night how hard it is to mix chemo, but friends, it took a full 2 hours to mix a tiny shot. And as I sat there waiting, I looked around at my new peer group in the Infusion Center. I am the youngest by far--by say 50 years (ok. maybe 30 years.) Oh. my.

That took forever. And I was starving. So Stalwart Sue, who sat with me all day long, and I stopped at Burger King on the way home. Too bad it didn't last long. But thank goodness for Zofran. And Sprite. And my own bed. And Glee episodes on the DVR.

I'm looking for another job. I hate this one.

Chemo, Schmemo

2010-12-14T17:29:00.003-05:00

Here is a list of things I am grateful for after a very long day of chemo (try 7 hours):

I can do chemo as an outpatient. Do you realize what this means? I CAN COME HOME. And here I am.
I am grateful that on long days, if I get there early enough, I can get a little room with a bed. Not just a recliner in the general infusion areas.
Which is good... especially because one of my chemos today has major effects on my bladder, so they had to give me like 3 other drugs to protect my bladder, which meant a serious need to go to the bathroom like every 15 minutes. You all who know me well know how well that works (yeah, I'm talking about you, LH. In front of Blair House.).
NS. Period. She picked me up this morning, and after we found out it would be 7 hours, she went to my house to get my quilt (I was FREEZING! Zofran always does that to me!) and my laptop and some Panera soup yumminess, then came back to pick me up in between carpooling her children all over town. Bless her.
I love a good, organized, slightly OCD nurse. Love her/him. I had a great nurse today, and I met the nurse supervisor who does all the scheduling, who answered ALL my questions and warned me that she would be changing things up a little when she knows it'll make me sick (shot vs. IV). Plus she's the one behind color coordinating my schedule. And she cleared things up with some scheduled shots that I do NOT need and some pills that I DO need. You really have to stay on top of things.
Whenever my oncologist is around, he always stops by to see me and answer any questions. I have an appointment with him on Thursday, when we'll get the results from my spinal tap. Pray for no leukemia in my brain. That means trouble plus more spinal taps.
I love happy drugs. I had them yesterday with my spinal tap, which I'm convinced is why I survived. I think some of it has carried over today. That said, I'm the world's biggest couch potato. I have no energy. I'm OUT of it. I worried yesterday that my towel rack was crooked. And then I just gave up and took a nap. And watched Househunters International.
I love my roommates and friends. Last night I laid flat on my back on my futon. VA came up to watch TV--we found the Sing Off. VA settled in my bed, and then LC came and settled in my bed with her. It was an awesome night. KB came but didn't fit in my bed, so she went home. Really she went home because her husband wanted to have FHE. Tonight DS carried my laundry downstairs so I could do it.
And the best? For the next two weeks, the only chemo I need is a shot!!! How fast and easy is that?!?

Cake

2010-12-13T18:59:00.002-05:00

Spinal tap: check.

It was a piece of cake, compared to the bone marrow biopsy, and even getting a picc line or the ultrasound. Maybe it has something to do with the "happy drugs" they gave me (one nurse even called it the "bravery drug"). At any rate, I didn't feel a thing. I just had to lay on my back for four hours after to seal the puncture.

FYI1: if the wound doesn't seal, the lack of pressure will cause major headaches. Do you know how they make the wound seal? They take some of my own blood and cover the puncture area, and my blood will make a glue and it will automatically seal. Cool, huh? Not that I hope we get to that.

FYI2: the spinal tap (or lumbar puncture) is to check the spinal fluid for any negative side effects from my first round of chemo, and to check for leukemia in the brain stem, a secondary place besides the bone marrow where the cancer can spread easily. The results should come in a couple of days. They also administer one of my new chemo drugs for this regime into the spine.

Many thanks to dear Emily, who sat with me the whole prep time and the whole four hours after while I lay flat on my back. She even fed me chicken strips and french fries. It's a good thing that baby Claire gives her good practice to feed people! And to Lee Ann for bringing yummy dinner. I've been sleeping and laying on my back all day ever since.

Here's to four more spinal taps over the next two years!

More Ways To Help

2010-12-12T00:01:00.009-05:00

This is so much fun to sneak on as a guest blogger again. Okay, I didn't sneak, I really did ask permission. :) I told Jenny when she began blogging again that I was selfishly disappointed because I enjoyed the few times that I was able to check in with her and guest blog on this amazing blog of hers. But really I am so happy that she is already feeling up to blogging for herself again, because I love hearing her strong spirit in her posts! Jenny, we love you and appreciate the wisdom and strength you share with us!

Okay, so for the real reason I get to sneak on here again . . . Jenny continues to need a lot of help with rides, meals, and visits to check in on how she's doing. (That girl has quite the schedule now of DAILY appointments! And no breaks for holidays!) In order to coordinate this effort, we have set up an online network which has a calendar and list of needs that we continually add to. If you live in the area or are visiting and would like to be a part of this online network, please join by sending an email to welovejennyreeder (at) gmail.com and let us know how you know Jenny and we will give you the information to join the network. By joining this online network, you are not committing to service events, it just gives you a chance to see the opportunities and decide whether you would be able to participate. Jenny and all of us thank so many of you who have been so helpful to Jenny while she was in the hospital and now that she is home.

Thank you!

The Crystal City Ward Relief Society Compassionate Service Committee

Your Mission, Should You Choose to Accept It...

2010-12-11T11:21:00.002-05:00

Yesterday was a much better day, thank you very much. My white blood cell count went up from 2.2 to 2.4 (normal is 6-10. coming: a post about how my life is measured in numbers), I had a lovely afternoon nap, I went to dinner for my roommate's birthday (a real restaurant! I wore real pants not sweats! the public!), and I did yoga. Oh yoga, I love you.

Last night as I knelt down to pray before going to bed (yes, I'm that kind of believer), I felt a prayer well up out of my core that I didn't know was there. I always thank God for the very specific blessings of the day, and after my gratitude came this inner voice, the real Jenny Reeder, that I forgot existed. And this is what she said:

I have a mission to perform in life. I must fulfill it. I have things to do. I must get through this. I must push past the pain and discomfort of this temporary thing in my life. I cannot let cancer beat me, nor can I be a victim to it or to its many fears. I must rise up and fight it.

And that, ladies and gentlemen, was a turning point for me. My life is so much more than complaining about tingling feet (and oh boy, do they tingle and are cold!), or being scared of the first of many spinal taps and many more bone marrow biopsies. I am greater and bigger and much more long-lasting than this. And I've GOT to get better so I can get to work.

Keep Calm and Carry On

2010-12-09T20:08:00.002-05:00

Many thanks to sweet Janiece for sending me this poster. It was on the door in my hospital room, and now it's on the wall in my room, staring me in the face, daring me to have courage.

They told me it would happen, the depression stuff, that it would come and go. I thought, "Oh, they don't know me. I've got this great support system. Plus I have faith and strong religious beliefs." I smiled and said, "Ok. Thanks." And I forged forward.

Well, it hit. Today. I didn't want to get out of bed. I'm tired. I'm tired of all of the rigamarole of my new lifestyle. I'm tired of using the neti pot on my nose, of gargling salt water, of trying to stay hydrated, of getting blood drawn, of waiting for doctors and nurses and phlebotomists. I'm tired of very short, newly growing hair covering my pillow every morning and my hats and scarves. I'm tired of chemo-brain. I'm tired of being tired. And I'm tired of carrying on.

Part of it is because my mom left yesterday, and I'm here. Independent. Alone.

But so not alone. Sweet Krysta picked me up this morning and brought me home today, and filled me with news of dear people around me who are also struggling. Shireen met me at the hospital as I waited for blood labs and just sat with me and talked. She brought me a huge basket of Trader Joe goodness. Then when I could not make myself get up out of bed after my afternoon nap, Laura called and came over. She helped me make a list of things and she vacuumed my room. Julie, Elliot, and Bronco brought me some delish butternut squash soup and bread. Ken left a book at my door.

And as I tried to sort through my packet of my next round of chemo and all the side effects, my mountain of emails and all the thank-you cards I should be writing, the yoga I should be doing, the piles of papers I should be organizing, and the overdue articles and reports I should be writing, I decided to start with some scripture studying and seeking faith. Just a few I found:

The Lord in his great infinite goodness doth bless and prosper those who put their trust in him. (Hel. 12:1)
Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. (Prov. 3:5-6)
Faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith. (Eth. 12:6)
The trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing. (James 1:3-4)

I love that last one. I love the idea that the word perfect means complete, or whole, and that I can be made complete, whole, and entire, through my patience and faith.

One last good news: my bone marrow biopsy came back clear and we proceed as scheduled! I'll be honest--I wasn't in the frame of mind to ask more questions when the nurse called (and she's the less-than-helpful one), other than to make sure it was good news. It is. Keep calm and carry on.

By Way of Explanation

2010-12-08T17:53:00.002-05:00

Not much to report today, but a visit to the Infectious Disease doctor (follow-up visit from the three infections I had while in the hospital--I'm done with my $1,300 8-day antibiotic--and if I get any fever, chills, or diarrhea, I'm to contact my oncologist and probably be admitted to the hospital for IV antibiotics--pray for me), and the departure of my dear mother (I don't want to talk about it--but she'll be back soon for Christmas).

So... some explanation based on numerous questions:

I have A.L.L.--acute lymphoblastic leukemia. Acute means it came on super fast--my oncologist said if I had had a blood test three months before, this never would have shown up. Lymphoblastic means my bone marrow is producing distorted lymphoblasts instead of the correct ratio of white and red blood cells. As one friend said, it's really an awful name, but I should work with the acronym, playing on the famous Mormon hymn, "Come, Come Ye Saints": "A.L.L. is not well, but A.L.L. is OK."
My bone marrow biopsy from yesterday will determine whether or not my leukemia is in remission. That means a close look at my bone marrow will tell what kind of blood it's making--if it's making regular ratios of the right kinds of white and red blood cells, then I'm in remission. If not, then we fight it more aggressively.
I will have chemotherapy treatments for the next two years, even if I'm in remission. The first phase was an "induction" phase, and the next two phases are "intensification" phases, followed with "maintenance." This is to ensure that the cancer is indeed gone and doesn't return. Supposedly these next phases are not as hard as the first one.
If I'm not in remission, this will change the next course of chemo to something more aggressive. But we'll talk about that when we get there. My oncologist doesn't think this will happen, based on how I've responded to this first round.
Chemo kills my blood cells, both the bad stuff (lymphblasts) and the good stuff, which is why I've had to have several transfusions, platelets, and shots to boost my white blood cells. And this is why I have to have my blood drawn nearly every day. So far since I've been discharged, I haven't needed anything extra. But I will. Oh I will. And I'll be prepared with benadryl to prevent another allergic reaction.
I am scheduled to start my next round of chemo on Monday. Day 1 is a spinal tap to see how the fluid in my spine has held up through chemo, and to administer the first type of chemo through my spine. It's done in the radiology department in the hospital. I'll be honest: I'm a little freaked out. And I'll have to do this on the first day of each round of all remaining five rounds of chemo. BUT, they say it's not as bad as a bone marrow biopsy (or as I like to say, in a Greek accent, bibopsy. Name the movie). I've done that. Twice. So I can do this, right?
The remaining 24 days are done as an outpatient in the Outpatient Infusion Center at the hospital.

So when people ask me if I'm back to normal, the answer is no. No I'm not. And I don't know if I will be. I'm still so so so tired. I sit around a lot and read or sleep or watch TV. I can't wait for the day when I can catch up on my missed deadlines for articles, or actually work on my dissertation. Or catch up on emails. And thank-you cards.

And I'm saving up tonight for a Ward Council meeting. I'm so excited for an hour or two to get out of my bed, NOT for a doctor's appointment. I get to put on a skirt! and boots!

Good News!

2010-12-07T15:04:00.002-05:00

It's [my cyst] dead!
The cyst of my ovary is dead!
The wickedest cyst there ever was, [certainly not in all reality--but for today, in my body]
The enemy of all my future kids IS DEAD!
GOOD NEWS! GOOD NEWS!

This song from the musical Wicked has been running through my head ever since my sweet ultrasound tech last night told me that my ovarian cyst is no longer there. WAHOO! As I sat through the depths of an uncomfortable ultrasound last night, I was trying to prepare for the worst, and I was almost prepared for the worst case scenario, which in my mind, last night, in that dark, cold room, was a hysterectomy. But it seems that that scenario has been spared me.

I was so excited that on the way home, we stopped for ice cream. But then I was too tired to eat it. Man, I'm one tired person. I'm kind of a hot tired mess.

The other GOOD NEWS is that I survived my bone marrow biopsy this morning. I tell you, it's weird. But I also tell you that if you ever, ever have to have a bone marrow biopsy, I highly recommend my oncologist, Dr. Feigert. He's performed over 2,000, and he has it down to a very quick science. And his sweet nurse held my hand during all the really hard parts ("now you're going to feel some sharp pressure."). As one person said, isn't all pain really just immense pressure? Think about it. Results will come in two or three days. Let's hope it's the same kind of GOOD NEWS that I heard last night.

My mom is leaving tomorrow. Oh how I love her and how grateful I am for her to drop everything and be here with me, almost 24-7, for the past month. Oh how I hope she is able to pick up the remnants of her life and find a job. If you know of any jobs in the Provo area, please oh please keep us posted. And I can't wait for Mom and GranNomi to come back for Christmas.

The New Normal

2010-12-06T14:19:00.002-05:00

Now that I've been home from the hospital for nearly a week, I'm settling in to what I call "the new normal." Here is my new normal schedule:

Wake up, have some breakfast, saran-wrap my picc-line arm, take a shower, get dressed. This sometimes takes me a long time, depending on how tired I am and where I have to be.
Most weekdays: go to the hospital for lab work. This, I've come to learn, takes a while. You have to check in, like at a dr.'s office, wait to be called to a registrar/billing person, who takes forever to look you up and resubmit all your information every time--and last time I found like 6 grammatical/spelling errors on their patient consent form while I waited. THEN you go back to a room and have your blood drawn by a phlebotimist (people--remind me why I have a picc line? When I was in the hospital they drew blood and administered chemo/ivs in my picc line. Now I still have to draw blood. My right arm is turning into a big bruise).
Go to the nurse practitioner at the oncologist's office. Luckily it's right down the hall from the hospital lab. Unluckily, it takes FOREVER for the lab blood work to be done, which is the whole reason to go to the nurse to look at my blood work to see if I need a transfusion or platelets or neuprogin shot to boost my white blood cells. The good news is that while my numbers have dipped a bit, they haven't dipped low enough for anything extra. The nurse asked me today what I've been doing--my levels should be much lower. I think that's a good thing.
Go to any other appointment. For example, today I had an appointment with my primary care doctor. Luckily her office is in the hospital and she is awesome. Unluckily, I thought I planned it right to see her, get my lab work, and see my oncology nurse all in good time. Nice try, french fry. I waited an hour for the first appointment, which set everything off. By the time I was done with the nurse, I had to have food. Fast. Which means hospital cafeteria food. Which is not awesome.
Usually I come home and crash for a couple of hours, then wake up in the late afternoon and enjoy the evening before popping my ambien so I can sleep at night.
Or if I have the courage, I go for an afternoon walk. And if the wind isn't blowing.
I have an antibiotic I have to take every 6 hours--and I have chemo-brain, so I have to set my alarm to remember. It still surprises me. I also have to use a prescription mouth wash to prevent any mouth sores/fungus (awesome side effect of chemo) and gargle with salt water and baking soda after every meal. And I have to use a water pic instead of flossing my teeth. I kind of like it better.

That is my life. I'm settling in. But I'll be honest. Every once in a while, I'll stop and realize how this IS my new normal. It freaks me out. I don't like this normal. But as Dr. G. said today, this is a new normal for now... but it's temporary. There will be another new normal. Thank goodness.

On other fronts:

I get to go back to the hospital for an ultrasound tonight to check an ovarian cyst and fibroids. We have to figure out their condition and take some preventative measures before next week.
I have a bone marrow biopsy tomorrow to see if I'm in remission. Pray for me. Not fun.
I start my intensification round of chemo next Monday for eight weeks. Day 1 includes chemo through a spinal tap. Awesome. This round should be much easier than the last round. Serious awesome.

Milestones

2010-12-05T14:16:00.004-05:00

Friends! I'm back! It's ME! I have so much to say and so so so many people to thank. It's a bit overwhelming. But, as with everything else in this crazy adventure, I can only take one step at a time. And today I want to talk about a few milestones which have become mighty tender mercies.

Today marks one month--on Friday, 5 November, I got blood results at the student health center at GMU and was sent to the ER. Little did I know my life would never be the same.
Tuesday, 30 November, I was wheeled out of the hospital. I'll never forget. It was about 60 degrees, cloudy, and all the brightly colored leaves that I had seen walking in were gone. But the breeze--the fresh air--I have never felt anything like it. I wanted to sit in the breeze and soak it all in. And sure enough, on the way home, I noticed trees here and there who had maintained their bright, vivid fall color just to see me home. I love how long seasons last in DC. And I love love love my own bed.
Wednesday, 1 December, I went on a walk! Outside! It was wind-whipping cold, and I only made it across the street and half a block before being driven back home, but I was out! Untethered to an IV or neuprogenic room restriction! My cheeks become rosy in the cold and it felt great.
Thursday, 2 December, I went back to the VA Hospital Center for lab work. My levels were all normal--even if it was the low end of the range. Take that, chemo (which is supposed to drop everything)!
Friday, 3 December, daily lab work showed my CBC (complete blood count for you newbies) was down slightly, as to be expected, but not low enough for a transfusion, platelets, or shot to boost my white blood cells (they thought I surely would drop enough to need something).
Saturday, 4 December, a walk all the way around the block with Emily and baby Claire. It was cold, but so so so great. Visits from old roommates (one came from Colorado and one from NYC with real New York bagels!).
Sunday, 5 December, I ventured to church this morning! I slipped in as sacrament meeting was starting and out just before the closing hymn. It was delightful and wonderful and exhausting. And I wore my new purple hat--I'm going to bring hats back to church, I tell you. I came home and promptly slept.

Love you all! More tomorrow!

And shout-out to Chris Jones in the hospital somewhere in California--be strong, my friend!

there's no place like home

2010-12-02T22:52:00.003-05:00

Jenny is home and is very happy to be there, I stopped by yesterday and she seemed so relieved to be out of that hospital room. She modeled some of her many hats that have been given to her and she looked fabulous in all of them. She will be needed daily rides to the hospital for her second round of chemo and treatment starting next week so let us know if you would be willing to drive her occasionally. I for one am jumping at the opportunity to spend some quality time with Jenny Reeder. She has her bone marrow biopsy next Tuesday or Wednesday to see if she is in remission, so keep those prayers coming. We love you Jenny Reeder!

Ladies and Gentlemen, Jenny has left the building

2010-12-01T01:11:00.000-05:00

Good News! (Insert JennyReeder happy dance here.) Our cancer-fighting superhero is nestled all snug in her own bed tonight.

Despite some drama at the time when she was going to be released, she was finally allowed to go home. She said she got teary just breathing the fresh air and feeling the breeze on her face. (Can you imagine how much we take just walking outside for granted. After today, I hope I never take it for granted again.) Jenny was also thrilled beyond measure to eat dinner at a real table (with a tablecloth no less!), in a real chair with a glass to drink from. She's been getting a little excercise going up and down stairs as well.

Today was not all sunshine and roses however. This morning's final chemo treatment gave her her worst reaction yet. Jenny could feel the burning from the inside, it made her throw-up and put her in a lot of pain. But chemo is DONE! There is still antibiotics for 3 more weeks, and a huge maze of insurance, perscriptions and appointments to get through, but she knows that somehow things will work out. The Lord is in charge and some how everything is going to be okay.

The Sister Missionaries stopped by to visit with her yesterday and shared a talk from Dieter Uchtdorf about Patience that lifted her spirits tremendously. President Uchtdorf says: "patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"

I am so proud of our Jenny for enduring well.

Now that Jenny is home many of us would like to rush to her side to be uplifted by her amazing spirit and to offer what comfort and good cheer that we can. In light of that enthusiasm I would like to share some important guidlines that Jenny's Bishop (local church leader) has outlined:

Please call before stopping by to visit Jenny, and please understand if Jenny declines some visits so that she can rest and recuperate. In addition, visitors who are not 100 percent healthy (or whose families or roommates are not 100 percent healthy), are not permitted to visit -- so if you have a cold or even just feel a cold coming on (or have a sick child or roommate), please wait to visit Jenny until you (and your children and roommates) are absolutely healthy. And children -- healthy or not -- are not permitted to visit at this time. Thanks in advance for complying with these restrictions. We want to do our part to watch over and care for Jenny.

My thanks to all of you who are doing so much to watch over and care for Jenny. I think I speak on behalf of many of us JennyReeder fans who are far away and feeling rather helpless in our long distance status during this time. Our prayers are not only for Jenny, but for the many people who are doing so much to help our beloved friend. Thank you!

The great escape . . . is coming

2010-11-29T17:04:00.005-05:00

Ladies and gentlemen, fresh air is around the corner.

JennyReeder enjoying an alpine picnic in Wales, 1993

As of this afternoon JR's neutrophil level has DOUBLED! She's now at a high enough level that they'll let her leave - soon. She's trying not to get her hopes up but there's a chance our dear JennyReeder will get to leave tomorrow. (Say prayers & cross fingers, everyone.) Tuesday is her last day of chemo and if she's still doing as well, she is going to get to go outside and eat fresh fruits and vegetables again!

If that news wasn't exciting enough, today JennyReeder is trying on hats - lots of hats. I imagine it's like an 80s chick flick in her room today. Weren't the girls in those movies always trying on hats and laughing? Apparently she's trying on all kinds of hats that people have sent her. She says she looks stylin'. How could she not? She did mention that she's going to look for some kind of hat liner since her head now has a different texture and putting a hat straight on her head doesn't quite feel the same.

The prayers are working, so keep them coming. Just think, our girl could be out soon!

Of Naps and Neutrophils

2010-11-28T21:03:00.002-05:00

As most of you know, Jenny is very organized and structures her time well. One of her long-standing Sunday rituals is the Sacred Sunday Nap. As the name implies, this mandatory practice occurs after church, when she gets to snuggle down under a quilt and doze for a couple of hours, helping to guarantee that her Sabbath day is indeed a day of rest.

Jenny needed the Sacred Sunday Nap a little earlier today than usual, because she was woken up at 5 or 6 o'clock this morning by someone wanting to take her blood. She couldn't fall back asleep and finally resigned herself to a few hours of wakefulness until her blessed Sunday Nap mid-morning. Ahhhh....

Here's the news on the cancer front:

Jenny's white blood cell count is down but her platelet count is up, which means her bone marrow is doing something good. Hooray!
That Sacred Nap was even more important today because Jenny had some unexplained bloating and cramping that totally wiped her out. (As if getting woken up at 5am by someone poking a needle in your arm isn't tiring enough!) She's going to discuss this more with her doctors tomorrow to try to identify the cause.
Jenny is probably not going home on Monday.
Jenny's will receive her last chemo treatment on Tuesday, which means she could go home on Tuesday or Wednesday.
In order to be released from the hospital, Jenny has to have a neutrophil count of 1000. (She's not 100% certain what the neutrophil count/measurement is but has been told it has to do with the ratio of white blood cells to red blood cells. According to an entry on wisegeek.com, a neutrophil is a type of white blood cell.) Right now, her neutrophils are at 700.

Stay tuned as more news on Jenny's release date becomes available. You know you'll read it here first, folks. In the meantime, pray for more white blood cells/neutrophils for Jenny!

The Long Journey Home

2010-11-27T22:41:00.003-05:00

Good news and some bummer news for our most loved Reeder today. The very, very bummer news is that Jenny will not be coming home for her last treatment and will remain in her love adorned room until her blood count is higher (it dropped again today as a result of yesterday's chemo). The good news is that Jenny only used the word "bummer" and not a stronger and more colorful word to describe how she was feeling about the news from the oncologist. Although very disappointed, Jenny seemed positive and strong as she talked about her new do and how she spent the day experimenting with scarfs and hats. She discovered that she prefers scarves as they keep her sometimes chilled noggin' warmer. Jenny is anxious for fresh air, fresh fruit and veggies and the comfort of being at home. We decided that a HUGE fruit salad (and cold-sore medicine) will be waiting for her at the end of this next week. We absolutely adore you Jenny and will be sending high blood count vibes your way!

As Jenny was telling me how she was experimenting with new looks, she sent this photo to my email. She can totally rock pink.

The Real Deal

2010-11-26T21:40:00.004-05:00

While some of us were out getting awesome Black Friday deals, Jenny was getting her own kind of Black Friday deal, in the form of great news from Dr. Wonderful.

Apparently, during today’s visit, Jenny learned that, although she is only on day 18 of treatment, her body (and blood) is acting like day 22. This is GREAT news!

When I asked for a translation of what that meant, Jenny explained, “My blood counts are showing that progress. My white blood cells are going up and the red blood cells are stable. That means that they are not going up, but at least they are not falling as they have been for the last few weeks. However, they’re still pretty low.”

The best part of this news, is that now there is a slight chance that she can come home this weekend, or maybe Monday. Jenny tells me that the oncologist that is on call this weekend is very (almost too) conservative, so it wouldn’t surprise her if she didn’t get the go ahead to go home from him.

To be able to be cleared to go home, Jenny has to

1) Be weaned off of all of her IV antibiotics. She has been weaned off of one now, but isn’t sure how many more she is still on.

2) Be weaned off of the steroids.

3) Finish off her chemo… maybe. She had chemo today and will have one more round before she’s done, but the doctor thinks she may be able to do it outpatient.

4) Learn how to tie a mean headscarf. Ok, just kidding. But, if you do know someone that has headscarf tying skills, she would totally love to be put in touch with them.

There are so many things that excite Jenny about the prospect of coming home. “I can’t wait for fresh air! I can’t wait to eat a tomato or fruit, or carrot sticks or sleep in my own bed.” She probably would have continued on, but then made sure to point out that she’s trying not to get her hopes up too high, she’s counting on Monday-ish, but does not want to jump the gun and come home before her body can handle it.

In the spirit of Thanksgiving, I asked Jenny to give me a list of things that she is thankful for. She had so many that I stopped her after the first 10.

So many I am thankful for:

1) SO many people that call and say they think of me all the time.

2) People praying for me

3) People who send emails and texts…. All the people that send me stuff!

4) A girl detective/spy school book that was sent to her from a friend

5) The book of Sudoku puzzles that Sheila gave me

6) Ginger Ale – a rediscovered love

7) Michelle Loosli’s roasted cauliflower

8) People that bring me food

9) So thankful for the quilts – they brighten my room

10) Kind, kind nurses

The unveiling

2010-11-25T20:51:00.003-05:00

Today was a weird day she woke up feeling fine, took a shower and then just crashed. The day was a total relapse and she just felt awful. As a sidenote Jenny has had an unwelcome visitor in the form of a old lady with a New York accent loudly chatting on her cell phone outside her room. Today Jenny was not in the mood to have to listen to her loud rantings so she called the nurses station to ask them to quiet her. Nothing changed so after waiting five minutes Jenny got up and went to the hallway and said "lady you have to lower your voice" she didn't hear her so Jenny raised her voice and said it again and told her that she was tired of being woken up by her, after sizing her up the lady slinked away. Jenny felt like she had just cleansed the temple. (read that in a not sac relig way).

Good/Great news of the day Jennys white blood cell count is up to 1.5 and the oncologist says that they will just skyrocket from there (woot woot). For those keeping count Jenny has just two days of chemo and just five days of treatments.

And now for the new haircut, we had a small quiet head shaving party and Jenny was incredibly brave. There was laughter, dancing, tears and a heated discussion about whether Katie Perry sings about a plastic bag in her new song Firework (she does and I was wrong). In the end we were surprised to find that shaving her head didn't make her look sicker in actually made her look strong and powerful and beautiful, seriously she rocks this look. She prefers the top photo, she feels it looks more like her. we love you Jenny and are continually inspired by your strength and determination in this situation.

My Thanksgiving Wishes

2010-11-24T17:55:00.007-05:00

I have three Thanksgiving wishes for Jenny...

1. Sleep.
Jenny is feeling better now that she has gotten a little more sleep, though last night she didn't get as much as she would have liked. She says she has been sleeping better overall, though, and that it has been AMAZING.

2. A hearty appetite.
A friend is bringing Jenny Thanksgiving dinner tomorrow (thank you, MM!). The doctors tell her she is malnourished and she tells them that she's eating as much as she can. Hopefully she can follow the American tradition and chow down tomorrow.

3. Her own bed.
Jenny told me that they may release her at the end of next week (or sometime near then), so I'm adding that to my prayers and hope you all do the same!

Happy Thanksgiving, Jenny!
We are all grateful for you.

A New Look for Fall

2010-11-23T18:26:00.004-05:00

You know that Jenny Reeder, she's always been a little avant-garde. Years ago, when she and I were bunkmates in London we shared a tragic hair appliance experience. It was our first morning in town and I wanted to look my best. (Chuck & Di were on the outs . . .) So I plugged in my hair dryer. I turned it on, it made a scary noise and then exploded. It's too bad that we hadn't yet realized that you can't plug American appliances straight into the wall and expect them to work.

Jenny Reeder (as that is what I will always call her, not Jenny but JennyReeder, like it's Southern or something) had confidence in her curling iron. She plugged it in and it sounded normal. Hooray! Then she grabbed her bangs and began curling. Unfortunately, the curling iron also grabbed her bangs - and didn't let go. "I just burned off my bangs!" became one of my favorite London memories. We all learned from that experience, from Jenny Reeder's great attitude and enjoyed watching the bangs grow back. They did, you know, and they looked fantastic!

Jenny Reeder and the author of this post posing after their Hwat Chawcholate Tawk skit at the, ahem, "talent" show. Look how great her bangs look a few months after the famous curling iron incident! By the way, we are stuffed with extra clothes, not just with the Fred Bread.

Jenny is going for a new look tonight. Once again it's not entirely her choice but she will rock her new look. Tonight she's having a celebration by shaving off her old hair and starting fresh. Has she been looking forward to this? Um, no. But that Jenny Reeder has been having a lot of pretty exciting experiences lately. Why not one more?

Here are some other exciting updates:

Jenny Reeder has some new blood! Yeah!
She also has a bunch of new platelets! Also yeah! Today her platelet count is 44. Normal is 100 but at least it's not 10 anymore.
Her protein count is very low. To help her get it back up her mom went to Ted's Montana Grill and brought her a big steak. She told me she's going to also help raise her protein levels with some delicious Ensure. "At least it's chocolate," she quipped.
More big news - she slept last nigh! The doctor upped her Ambien dosage and it worked!
Jenny Reeder was STANDING as I talked to her this afternoon! She also sounded so much better than I had imagined. She still feels pretty crummy but being able to stand is a big deal.
She's had some lucid moments lately and has been able to do some Sudoku and just finished the Hunger Games trilogy.

That's the scoop for tonight. Send a few extra prayers her way when you read this. We all love her and want her better soon. Congratulations to JR on being a trendsetter with this new look!

Sleep.

2010-11-22T18:59:00.002-05:00

You know that scene in THE WIZARD OF OZ where Dorothy can't stay awake in the field of poppies? She has no choice but to sleep and the sleep comes easily?

Well, that's what we need for our Reeder.
She so desperately wants to be able to get some good rest so she can get some strength back. And we need to pray...for sleep.

Today was "relatively better" (so much of this is all relative, isn't it?)

The CT Scan was the easiest thing she has yet experienced. 3 minutes and it was done. They confirmed she has sinusitis (my apologies to the good spellers out there) but it's a lot better today. It's tender but she can breathe.

She watched a little GILMORE GIRLS tonight...so that explains a lot of what made the day better (who can't benefit from a little bit 'o Lorelei?) and her mom is still there and that's just such a blessing.

Visitors have slowed down and Jenny is actually grateful for that. It's just so tiring. But, she knows she is loved and prayed for and is so grateful for everyone's thoughts and kind deeds.

And now we just need to pray for the best night's sleep she's had in a long time.
God can do that.
He can put her in a little field of poppies and help her sleep tonight.

Pray that He will.

The Storm

2010-11-21T16:52:00.004-05:00

Jenny's mom attended church services today in Jenny's ward (a ward is what Mormons call an individual church congregation), of which I am also a member. I spoke to her briefly afterward as she was leaving and of course asked her how Jenny was doing. "This is the storm," her mom replied. "She's going through the storm."

As I'm sure you've all been able to piece together from the blog posts this past week, The Storm means that Jenny's body is simply getting beat down by the chemo. Positive attitudes and supportive friends notwithstanding, it's a rough ride and it's taking a toll on Jenny.

Since the doctors discovered Jenny's infections, she hasn't been able to leave her room for her daily walks due to the increased risk of further infection. Not that she has the energy to go for a walk most of the time anyway. Nor much of an appetite either (but also no nausea lately--yay!). Her good friend Mauri brought some falafel last night that tasted so good.

Today's big news that Jenny wanted all her blog readers to know about is that she spent an hour trying to blow her nose. Yes, you read that right. It took her an hour just to blow her nose. Here's how it went: Spray saline solution into the nose, try to blow the stuffiness out. Repeat. Repeat again. When all was said and done, some "scary stuff" had come out and she'd used almost an entire box of tissues.

When asked about her hair, Jenny said, "I don't want to talk about that." It has started to come out.

In spite of being in the middle of The Storm, Jenny continues to look for the positive elements in her days. For instance, her two sisters have been here all weekend, visiting from The West. (They fly home tomorrow.) It's been wonderful to have them here, not only to boost her spirits but also to take advantage of their mad artistic skillz. To wit, today they gave Jenny a pedicure. Not just any pedicure, but a very snazzy designer pedicure. Check it out:

This just in! One of the blood infections Jenny has is connected to her sinuses (hence, all the nasal congestion). Consequently, she's going for a CT scan (tonight?). Keep your fingers crossed they'll figure out what's going on.

Jenny continues to be very popular and hosted a steady stream of visitors this weekend (in addition to her sisters). She appreciates all the love and support everyone is showing her and enjoys seeing her friends. She also appreciates it when visits are short, as she tires easily. In fact, she had to end our phone call this afternoon after only a few minutes because all the talking was leaving her out of breath. Please keep that in mind when going to visit.

Tomorrow Jenny will get a new PICC line put in and another round of chemo. Two weeks down and two to go! I'm sure we are all counting down the days with her until the chemo is over. Hang in there, friend! I have no doubt you'll weather this storm and soon you and all your new white blood cells will be basking in the light of the rainbow that follows.

Views

2010-11-20T05:00:00.006-05:00

When I visited Jenny last weekend I took pictures of the views out her hospital window, about at the level of her bed, to give you all an idea of what she sees everyday.

Of course then I had to ask her about her favorite views, the good views, the bad views, the funny views... here are her answers:

Not-so-pleasant views: the bottom of a barf bucket, the low numbers of my blood counts on the charts I keep every day, the one mean nurse missing a tooth, and sometimes the sight of that black room service tray...

Good Views: The favorite quilt from my childhood. We always fought over it--it was so soft, yellow with orange ties. Whoever was sick got first dibs. It's been patched up over the years. After her own health scare and legitimate "claim" to the yellow blanket this summer, my sister Annie just mailed it to me!

Whenever I get a prescription or new iv, the nurse has to scan my wristband. So I see a lot of red-green-blue barcode light. I had my first wristband for a week and a half before it started wearing off. Then the scanner took forever. Finally I got a new one that is good as new!

When I have the strength and courage to go for a walk, I like to see the views from the other side of the Robertb E. Lee oncology wing. From one window I can see the Masonic Temple and from another I can see the Washington monument and the capitol. Quite impressive! And of course I love to see the way the sun shines differently on the beautiful colored trees.

Views that are missed: I miss fresh air and mountains. I miss driving and seeing my neighborhood and the little girls playing dress-up next door. I miss my nieces and nephews. I miss seeing my bedroom and all my books.

But mostly I miss energy and talking without losing my breathe and running. One day... soon!

And you know Jenny, we all miss seeing you on a regular basis! Keep looking for the good views!

scratch that - nothing is normal.

2010-11-19T19:25:00.003-05:00

Today was a rough one for Jenny. Please send lots of prayers her way.

Here's a recap:

The day started out on the wrong foot with a night of little-to-no sleep. First, a nurse was late bringing her the evening dose of medications and antibiotics. Then, the TV button broke and needed to be replaced. After that was fixed, her light wouldn't turn off - so they had to replace that button as well. What little sleep she did get was not quite restful, because of a stuffed nose. The main she is feeling is in her nose/sinuses because of the infections she has.

Speaking of infections, the day did not get any better when she learned that her PICC line needed to be removed because of them (the infections). This fact has caused the most tears, which she insists are really because she's so tired. As usual, Jenny explains that even though she is not happy that it needed to be removed, it is really a good thing. Though they will have to "poke" her every time she needs an injection or to draw blood, (causing more bruising than normal), this does mean she will have a three day reprieve from Chemo, which they will do again when the PICC is replaced in three days.

Jenny told me that her friends M & J were there to distract her and tell her funny stories while the PICC was removed. She was so grateful for that!

She is worried about her insurance situation. It seems that she could make some changes that might help, but it would put her "student" status at risk, and that may cause her to loose her fellowship. Our bishop has assured her that he will figure it out.

This evening, things were looking up. She ate pasta today and was craving pizza this evening. Her sister just arrived in town from Denver, bearing pictures of Jenny's nephews and nieces. One thing she has missed most while in the hospital is that she cannot be around children. She has loved the letters, drawings and videos her little friends have sent to her the last two weeks.

The doctor has told her to expect the next 10 - 14 days to be the worst of the treatment. Although, as reported yesterday, the leukemia is gone (along with all of her blood cells), Jenny is really worried about what is going to grow back. She says this process is simply exhausting.

Jenny wanted to reassure everyone that she gets every email, Facebook message and card - and REALLY appreciates every one of them. She apologizes that she can't respond to all of them. Please know that she is receiving them and that they are helping her.

The Church Is True

2010-11-18T21:29:00.003-05:00

Jenny had good news and bad news for me today, and I have to say that I am super excited to say that the Oncologist came in today and told her that the LEUKEMIA IS GONE! Awesome right, Jenny says that she thinks that just means all her blood cells are gone, but its a huge victory. This means that she will continue her chemo cycle (halfway done) and then they will do a bone marrow biopsy at the end of the month to check for remission. The chromogenetics test came back totally fine, and it also means no bone marrow transfusions. So a banner day in Jenny Reeder Land. The bad news is that Jenny has no white blood cells (the doctor said she might have 2 of them swimming around in there). She has three infections one in her colon and two in her blood, so they are pumping her with antibiotics. She is worried that they might remove her PICC line, and she really doesn't want that to happen so lets all pray that she can keep it in. She is really tired and couldn't find the energy to pick up a book today, so we know that means she is crazy tired. She was in great spirits and was buoyed up by the good news (i think we all are). Lets remember that this fight is not over and we must continue to pray for her and visit her. We love you Jenny and love the new do' you look fabulous and I think you totally rock the pixie!

Inspiring Strength

2010-11-17T16:27:00.000-05:00

Last night was a tough night for Jenny. She doesn't feel nausea constantly but suddenly it hits and she loses lunch. This morning she had no appetite. The caregivers wanted to beat it this morning, so they've been trying different anti-nausea drugs. She's on Compezine now and it seems to work but really wipes her out -- so much that she missed the beloved shower this morning, but was able to get it in in the afternoon and felt much better. Other than this morning having no appetite, she has been able to eat well and has occasional cravings. Today it was for sweet potato fries, so her mom ran out to get them.

The caregivers discovered today that Jenny has an infection. They can't figure out where it is, but know she has one because she has a fever. The steroids also make it difficult to determine where the infection is. She says she thinks it might be sinuses because her nose really hurts.

Yesterday Jenny didn't feel up to blow-drying her hair. The nurse came in and told her it looked like she was already losing her hair. It was just because it didn't look as full and lovely as usual. :) The new hair cut will probably be tomorrow. Can't wait to see it!

Everyone at school is super understanding and keeps telling Jenny not to worry about her status and her TA work. But this frustrates Jenny, she just wants to know what's going on with her status, insurance, etc. and how it's all going to work out.

Tonight is Ward Council. Jenny is hopeful that she can attend via web-cam, unless she has a doozy of a night like last night.

Yesterday and today were tough. Pray for Jenny to feel better. And Jenny, you keep inspiring us with your strength and positive attitude! :) You remind me of the LDS hymn Carry On (text by Ruth May Fox) . . .
Firm as the mountains around us,
Stalwart and brave we stand
On the rock our fathers planted
For us in this goodly land --
The rock of honor and virtue,
Of faith in the living God.
They raised his banner triumphant --
Over the desert sod . . .
Carry on, carry on, carry on!

Tuesday update with Jenny part deux

2010-11-17T00:18:00.001-05:00

I had the supreme privilege to talk to Jenny from all the way out in Utah today. Today was a rough day of cancer-fighting our superhero friend, but she was her usual Jenny-self and it made me feel happy to talk to her. She was feeling especially happy about the red velvet slippers a wonderful friend had sent. (Thank you wonderful friend whose name I forgot to write down! Your red velvet slippers are LOVED!)

Some things I learned from Jenny today that other Jenny-followers might want to know:

Home Teachers are capable of making wonderful chicken enchiladas. She was so happy to have those delicacies and so pleased to eat them last night.
She is still holding onto her hair. Hoping for another week or two at least.
A school colleague came to help her finish filling out her Fellowship application that was due yesterday. Yay! Good news that the application is done.
Yesterday she received another dose (? please pardon my lack of proper medical jargon knowledge - I'm one of those people who majored in Humanities in college) of platelets and didn't have an allergic reaction this time. Good news! When she's had an allergic reaction in the past she's dealt with hives and needed a ton of Benadryl which, you can imagine, knocks her out.
Today was the first day the anti-nausea medicine didn't work. Not fun. While the anti-nausea medicine means she can consume food (like the aforementioned chicken enchiladas) it has side-effects of it's own such as making her cold and sluggish. (Did I get that right JR?)
I also learned that "Acute" in Jenny's diagnosis means the Leukemia came on really suddenly. Her doctor told her a blood test just a couple of months ago would have shown no signs of her current condition.

Jenny - it was so good to talk to you today. I hope I didn't slaughter the daily update. Next time I will take more careful notes. As you're all well aware, Jenny is one of the most amazing people I know. If there's a person on this planet who can kick this, it's her.

Our friendship goes back 17 years to when we met as flat-mates on Study Abroad in London. And since I don't have a good current shot to share (other than the fancy Ruby Red-velvet Slippers) I thought it would be fun to share one of Jenny when I first knew her, doing a stellar Druid impression. She's a woman of many gifts and talents, that girl. I sure do love her.

Pollyanna & Friends

2010-11-16T10:36:00.005-05:00

Today is not my day to give the official Jenny update, however I wanted to share some photos I just got. When Sue and I went to see Jenny last Thursday night, we were delighted to be joined by our mutual friend Nicole, who used to live in our neighborhood and now lives in Southern Maryland. She was passing through town on a road trip with her family and stopped in to see Jenny.

Nicole is a skilled photographer and took several pictures of Jenny's designer room. To complement Ashley's decorations, one of Jenny's friends (was it Rachel?) hung three gorgeous "crystal balls" in front of the window, tied with brown satin ribbon.

Not only are these crystal balls elegant, they also remind Jenny of the film, "Pollyanna," in which Pollyanna talks about the way the sun refracts through her aunt's crystal chandelier to make rainbows in the room--one of the many ways Pollyanna sought and saw the good in every situation. Jenny is certainly an example of having a positive, Pollyanna-ish attitude even in the midst of this trial.

Here are a few shots of Ashley's handiwork, showcasing the warm fall colors outside.

Ashely deftly mixed elements from art and nature to create an inviting space that reminds Jenny and all who visit her of the beauty that surrounds us, the abundance of our lives, and the importance of our faith in the Savior.

The twinkling white lights next to the window give the room a cozy, even magical, feel, making it a little easier to believe in miracles while you're there.

Sue and I were definitely the LEAST decorative elements in the room that night! Nevertheless, we were grateful to spend some time with Jenny and Nicole.

Day 7

2010-11-15T08:56:00.004-05:00

I'll be honest. I accepted the invite to blog for Jenny for purely selfish motives.
I wanted to secure the chance to talk to her every week and hear her voice.
And I think talking to her this morning did me more good than her (that's pretty classic Reeder, don't you think?)

I found out about everything that first weekend in November via txt messages. I was working an event and she was in the hospital. But, even over texts, my heart was in Virginia. And it has been every day.

I was just telling Jenny that because I'm connected to her through several groups of friends (or rather because I'm connected to several groups of friends BECAUSE of her), that I have a rare chance to see all the things people are trying to do, wanting to do, planning to do.

Is there a girl more loved than Jenny Reeder?
If there is, I do not know her.

SO...on with the update of Day 7 (and we'll see how good my journalism skills are...if I got this all correct).

First of all, Jenny sounds great and that made my heart happy.
So great that when she told me about her steroid treatment (daily pills to make her organs strong). She said there weren't any side effect but that her face is getting puffy. She said people tell her that her face ISN'T getting puffy. And she just wants to say, "Shut up, jerks!" That made me laugh right out loud (so even if her face ISN'T getting puffy...maybe just play along with her...grin).

One good thing about the steroids is that her appetite came back. In fact, yesterday she was randomly craving chicken enchiladas but then Reeder realized she was in Virginia and asked, "Where in the world am I going to find normal chicken enchiladas here?"
There is one Mexican restaurant that she loves but has only had their fajitas. She called a friend who called a friend and was assured this place had good chicken enchiladas. But, they came. And Jenny tried them and...no go.
Happily, her Home Teacher is making some for her and bringing them today.

Tomorrow (Day 8) is a big chemo day that will likely wipe her out. It's a drug she has had before but it's the drug that will likely make her hair fall out. A friend is going to come and give her a cute little pixy cut in preparation. I don't know about you but I think if ANYONE can pull off a new look, it's Reeder. Petite people always can pull of a new look.

She is overwhelmed by the love and prayers and support. But, that's what happens when things like this happen. You find out who YOU really are through the way people are moved into action because of the impact and influence you have on them.
And I for one am REALLY grateful for Jenny's impact and influence on me.

GO REEDER!
(this picture was taken way too long ago...but it makes me happy.)

Sunday Update

2010-11-14T22:31:00.005-05:00

Jenny had a pretty good Sunday. She didn't get any chemo, just an infusion of white blood cells to boost her counts, which had fallen to a dangerously low 0.5 (instead of the seven to nine that they should be). She felt so good that she took not just one but TWO walks around her floor today. I'm sure she'll be training for a marathon again in no time!

Jenny's fabulous friend Debbie was visiting from out-of-town this weekend and spent most of her time with Jenny (leaving her husband to take care of the kids in the hotel room--awesome). Here are Katie and Debbie visiting our girl. (Not sure why it's so small. Click it to get a full-screen view.) Thanks to Anais for the cool panoramic pic.

Other good news from today:

Jenny's kidneys are once again functioning at 100%. Woot woot! She no longer requires the services of her nephrologists.
Jenny learned that she does NOT have the Philadelphia chromosome, which is a big relief and will help the doctors fine tune her chemo/treatment as they proceed.

When she wasn't visiting with friends or doing laps around the hospital, Jenny dug into The Hunger Games. In fact, she's nearly finished with it and on the look-out to borrow the second book in the series later this week. Anyone have a copy to lend her?

Stay tuned for more pictures and keep those comments and visits coming! Big hugs to you, Jenny!!

Warmth and Sunshine!

2010-11-13T15:39:00.009-05:00

Its very apparent when you are near Jenny's hospital room, there is just joy and love seeping out from under the door!

This weekend Jenny's room has had some out-of-town-guest-love, her Aunt and a dear friend, DW, in addition to her sweet mom, are bringing extra joy to the hospital room.

I am sure you all know that Jenny has mad-good sewing skills and is always making aprons or quilts for others. Well, bring on the quilters who are out in force to return the sewing-love and to take care of Jenny! DW, who drove down from Ohio, brought with her a beautiful quilt she made for Jenny (above photo), it is the perfect addition to add warmth and love to Jenny's life!

Last weekend some other friends pulled together fabric, sewing machines and love to make a bright and cheery quilt for her. Others pitched in to drive the quilt to the quilter, watch kids, sew on the binding and buy supplies. Truly a team effort! She gets cold after her treatments and so both quilts are perfect (and if there are any other quilts in the works please don't be deterred, they can happily be put in rotation).

A few other tidbits from Jenny's life:

Other patients and nurses have come to take a tour of Jenny's well decorated hospital room
Jenny has not met any of her neighbors, but she is the youngest on the floor by 30 years
For lunch she had a gourmet burger with grilled onions, thanks DW!
One highlight from today was a phone call from an old Bishop who is currently a mission President in Japan
Make sure to ask Jenny about the, and I quote, "sweaty-tooth-mad-man"
Jenny loves that she can still shower by herself...but do not interrupt her while she is blow-drying her hair. This morning she told her Dr to come back later, after her hair was done!
Visitors who break out into spontaneous dance and cheer moves are deeply loved! (Dance moves are not required to visit, though, check with SS in advance in case this does become a requirement at a later date)
The love from all of you is evident and heart-warming!

A New Reality

2010-11-12T20:34:00.003-05:00

One week ago this evening Jenny was being moved from the emergency room to a longer-term room. She and the doctors knew something was wrong, but she did not yet have even a preliminary diagnosis. When we spoke that night, she was concerned but in good spirits. Tonight, Jenny told me, “This has been the longest week of my life.”

Jenny explains that the chemo has now killed everything – her white blood cell count down very low. She is getting blood transfusions frequently as well as getting injections of platelets. In the next few days she expects to receive the results from her bone marrow analysis, which will tell the doctors the specific brand of leukemia. This will allow them to come up with an even more focused plan of attack.

She has become an expert on her unique medication cocktails, knowing how to expect to feel after each dose. Luckily her anti-nausea medication has worked perfectly, but she knows that not long after taking it she will be super light headed”

Last night, Jenny had an allergic reaction to the plantlets she had just received. “I woke up at 2 a.m to go to the bathroom. I looked in the mirror and noticed that I had hives all over my chest.” She called the nurse who quickly ordered a round of Benadryl and called her doctor. They decided that the reaction likely came from the preservatives in the bag of platelets, but this is still something that they need to keep their eyes on.

Also last night, Jenny was able to hold a Relief Society presidency meeting in her hospital room. (For those who don't know, Jenny is the Relief Society president of the Shirlington half of the Crystal City Ward) “This was the best thing about last night. It made me feel like there was more to me than just being sick!”

As she reviewed the many developments that have unfolded over the last week, Jenny told me that it has been very up and down emotionally and physically, but after a draining day yesterday, today has been a good day. “I have been more energetic today. I was just given steroids today, no chemo, which seems to have helped.”

Typical of the Reeder attitude we all know and love, Jenny has an inspiring attitude towards the life she is facing. “This is reality for me now – a new reality.”

The first few days, I was in a whirlwind, but this is my life now. I’ll only be here, in the hospital, for three more weeks, but I probably have two more years of chemo ahead of me,” she says. “I go through periods where I’m not ok, but there are times that I think, ‘ok this is my life now.’”

Jenny has been overwhelmed by the huge support network she has had behind her. “I mean, I always knew I had a lot of friends, but the amount of support I’ve received is overwhelming,” she explains. “My friend Debbie, from fifth grade, just drove from Ohio. She brought me a bag full of treats from a bunch of my friends.” Stories like this one seem to be never ending.

To those reading this blog, Jenny would just like to say thank you. “I know that my mission in life isn’t fulfilled yet. I am going to overcome this. I want everyone to know that I know I have a mission in life, and it’s not over. So I think, ‘Well then let’s do it, let’s kick this cancer!”

You are my Sunshine

2010-11-11T16:32:00.003-05:00

Jenny says that the treatment is kicking her butt, but says that is a good thing, kick the lymphoblasts right in the trash. Her kidney function is good and her appetite is back woot woot! She ate french toast and pizza today. However she says she is holding out for the Carlyle. We love you Jenny!

Financial Contributions

2010-11-11T09:10:00.003-05:00

Many of you desire to make financial contributions to support Jenny. She--and those of us close to her in the Crystal City Ward--are so appreciative of your desire to help. While Jenny will certainly need support with medical bills not covered by her insurance, she will also need help covering basic living expenses such as rent and bills in the coming months as she recovers from the treatment.

If you would like to make a financial contribution, you may donate to the fast offering fund of the Crystal City Ward. The bishop can use these funds to pay Jenny's medical bills and other expenses. Church members as well as individuals of other faiths are welcome to donate this way. On the standard donation slip, please indicate that the funds are for the fast offering. The check should be payable to "Crystal City Ward" or "LDS Church." Please send the donation with the standard donation slip to the bishop of the CCWard at his home address (email welovejennyreeder (at) gmail (dot) com to get this info). If you are of another faith and would like a donation slip and envelope, please email welovejennyreeder (at) gmail (dot) com to request that one be mailed to you.

If you would like to make a gift to Jenny directly, rather than through her local congregation, you are also welcome to write a check, payable to her. You can mail it to her at her home address (email welovejennyreeder (at) gmail (dot) com and we'll send it to you). If you would like to donate to Jenny anonymously, mail it to DS (one of Jenny's housemates), who will deposit checks from anonymous donors into Jenny's account.

We thank you for your generosity and support for Jenny.

Bishop KS, Crystal City Ward Bishop

SS, Crystal City Ward Shirlington Relief Society Presidency

"What I love about today."

2010-11-10T13:34:00.007-05:00

As you would expect from Jenny, when I asked her for an update for her blog she started listing things she loves about today. Gotta love that girl!

She loves the chocolate protein shakes brought by CL. She has had no appetite and a hard time eating. (I do hear she was also able to also eat half a cheeseburger and some pad Thai, which is great news.) She's craving fresh fruit but she can't have it due to bacterial concerns, but she can eat Clementines if someone peels them for her. (She didn't specify if that means they have to be delivered peeled or what, so email her before you send her a carton full of them!)

She loves her paper chain her roommates made for her to count down her 22 days of chemo. She has 20 days left-- Today she did her second round. It hasn't made her quite as sick as she had expected (she's yet to toss her cookies-- wahoo!), which is hopefully a sign of how she'll feel in the future with further treatment.

"I love my afternoon walk!"

She is loving her doctors and nurses and says they are the greatest. She describes them as a whole team, with groups of doctors for all of her different needs and she is so grateful to them all.

Her blood levels are going back down, which is to be expected. She will probably have more blood transfusions tonight or tomorrow, which usually boosts her energy.

And, of course, she mentioned how blessed she is for the outpouring of love she's receiving from so many people. I told her it's fitting, since she always takes care of so many people.

We love you, Jenny!