Everybody Needs a Laughing Place

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!

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

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

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...

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?

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

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...

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

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

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!

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

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...

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

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

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

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...

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

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

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

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.