Little Miss PICC-y

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

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

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.

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

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

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

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

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!

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...

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!

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...

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

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

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...