I once was lost; but now I'm found

I know, I know: I've been absent for over a year. Thank you for respecting my need for a little privacy and space.

Today I bring you the story of the lost pen. For those of you who know me well, you know that I do not have the best relationship with my father. Without going into the gory details (oh! but there are some great stories there!), I must say this: the best birthday present he ever gave me was a fancy Cross pen. I think maybe there was a fancy Cross pencil, and I love me a good mechanical pencil, but somehow in many cross-country moves, it was lost.

Here is my pen, in front of my apple and my bag of nuts and dried fruit. Yes I am drying my own fruit--bananas and pineapple. YUM! No I did not dry the craisins--those are from Costco, as well as the cashews and almonds.





Now I love me a good pen. I can't stand cheap pens that blot and run out of ink in the inopportune middle of a letter, or that get lost. I forgot about the fancy Cross pen from Dad until about a year ago. I even started using a little pencil box so I wouldn't lose it. My pen ran out of ink early this summer, and while in Utah, my dad even let me use his BYU Bookstore discount to get a refill, and he showed me with pride where they were on the shelf (another example of one of the nicest things he has done for me. Do NOT tell my brother Josh, who is convinced Dad cannot do nice things, simply because he'll asks Dad to do the same for him and Dad explicitly told me not to tell anyone--part of the gory details and great stories!).

Well yesterday I pulled out my pen in my Hist 100 class to take a few notes as my students took their quiz. And last night I realized that was the last I had seen of my pen. I had left it, inadvertently, in 2103 David King Hall (a room, which, if you care, is NOT mediated and I have to pick up a laptop and a projector in a wheely suitcase and walk it over every MWF morning at 8:00 am!). Oh snap!

Well I figured I could just get me another fancy pen. Or a cheaper pen that worked really well.

But.

I need to preserve this relationship. Not only with my pen, but with the nice things my dad has done for me.

And I think Heavenly Father is aware of that. Because He quietly suggested that I run past the classroom today after my Hist 125 class and get it. I was sure it would be gone--how many students and professors have passed through that room since yesterday? A lot, I'm sure.

But. Apparently they don't value fancy Cross pens, the nicest gifts ever from my Dad. Because it was still there. And as small and tender as that little mercy was, it means the world to me.

On other fronts:

• I'm still in remission. Hooray! Still having treatment. Boo! but only 2 more months. Hooray! Please bless that my low red blood cell counts and hematocrit and hemoglobin go back up fast, or I'm going to have to eat me an awful lot of red meat and spinach. Or maybe have more chemo?
• My hair is back, and boy is it curly! It's a regular mane!
• I taught D&C at BYU this summer and LOVED it. So much that I'm scared of the possibility of moving back to Provo.
• I'm teaching my own History of Western Civilization class at GMU this fall and LOVING it. Tomorrow we're discussing Greek civilization and I'm showing a clip from Disney's Donald and Mathemagic.
• I'm finishing my dissertation! Which means major revisions! Which means defense in March and graduation in May and being on the job market NOW!
• I'm still doing my Relief Society gig in the Shirlington Ward. Hooray!

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.