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.

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.

7 comments:

Laurel said...

you so deserve to be done.
you do.
and I'm sorry this just isn't getting any easier...that the burden isn't being liften to be just a little lighter...even just a little.

i miss you.
praying for you.
loving you.

xoxo

Sarita said...

Jenny, I have been thinking of you and praying for you. Keep strong. Beat this monster! And remember, even strangers are praying for you.

Sending big hugs.

Leslie Green said...

I hope you can get the transfusions you need, STAT!! I'm excited that the local blood bank cleared me to donate platelets! I'll try it for the first time in August! You inspired me to fight for the right!! :D

Lesli said...

Oh, Jenny. The battle goes on. And you will prevail, I just know it. Nap when you need to, cry when you feel like it, say "yes" when offers of help come your way, and keep that medical team on their toes! You are a great example of brave dignity and I love you.

Jason said...

Jenny i am so sorry you have been having a rough time. We love you!

Vicki said...

Hang in there Jenny! I'm sorry things are so difficult for you right now and I hope things get a lot better really soon!

M said...

Eliza to the rescue again! Hang in there, lady. You are tougher than this cancer!!! Think how much you've conquered already. Be gentle with yourself. Soon you'll be joining us for pool talk and whipping out chapters in your diss and rocking life full-time again. I know it. xoxoxo