Tuesday, June 28, 2011

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.

Wednesday, June 22, 2011

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.


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.

Sunday, June 05, 2011

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!

Wednesday, June 01, 2011

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.