Monday, December 06, 2010

The New Normal

Now that I've been home from the hospital for nearly a week, I'm settling in to what I call "the new normal." Here is my new normal schedule:
  • Wake up, have some breakfast, saran-wrap my picc-line arm, take a shower, get dressed. This sometimes takes me a long time, depending on how tired I am and where I have to be.
  • Most weekdays: go to the hospital for lab work. This, I've come to learn, takes a while. You have to check in, like at a dr.'s office, wait to be called to a registrar/billing person, who takes forever to look you up and resubmit all your information every time--and last time I found like 6 grammatical/spelling errors on their patient consent form while I waited. THEN you go back to a room and have your blood drawn by a phlebotimist (people--remind me why I have a picc line? When I was in the hospital they drew blood and administered chemo/ivs in my picc line. Now I still have to draw blood. My right arm is turning into a big bruise).
  • Go to the nurse practitioner at the oncologist's office. Luckily it's right down the hall from the hospital lab. Unluckily, it takes FOREVER for the lab blood work to be done, which is the whole reason to go to the nurse to look at my blood work to see if I need a transfusion or platelets or neuprogin shot to boost my white blood cells. The good news is that while my numbers have dipped a bit, they haven't dipped low enough for anything extra. The nurse asked me today what I've been doing--my levels should be much lower. I think that's a good thing.
  • Go to any other appointment. For example, today I had an appointment with my primary care doctor. Luckily her office is in the hospital and she is awesome. Unluckily, I thought I planned it right to see her, get my lab work, and see my oncology nurse all in good time. Nice try, french fry. I waited an hour for the first appointment, which set everything off. By the time I was done with the nurse, I had to have food. Fast. Which means hospital cafeteria food. Which is not awesome.
  • Usually I come home and crash for a couple of hours, then wake up in the late afternoon and enjoy the evening before popping my ambien so I can sleep at night.
  • Or if I have the courage, I go for an afternoon walk. And if the wind isn't blowing.
  • I have an antibiotic I have to take every 6 hours--and I have chemo-brain, so I have to set my alarm to remember. It still surprises me. I also have to use a prescription mouth wash to prevent any mouth sores/fungus (awesome side effect of chemo) and gargle with salt water and baking soda after every meal. And I have to use a water pic instead of flossing my teeth. I kind of like it better.
That is my life. I'm settling in. But I'll be honest. Every once in a while, I'll stop and realize how this IS my new normal. It freaks me out. I don't like this normal. But as Dr. G. said today, this is a new normal for now... but it's temporary. There will be another new normal. Thank goodness.

On other fronts:
  • I get to go back to the hospital for an ultrasound tonight to check an ovarian cyst and fibroids. We have to figure out their condition and take some preventative measures before next week.
  • I have a bone marrow biopsy tomorrow to see if I'm in remission. Pray for me. Not fun.
  • I start my intensification round of chemo next Monday for eight weeks. Day 1 includes chemo through a spinal tap. Awesome. This round should be much easier than the last round. Serious awesome.

7 comments:

Jennifer said...

I love hearing YOUR voice in this. I still say "nice try french fry" you know.

And isn't it interesting how obsolete all of our planning can be? ...We got t-shirts in Thailand when we were working with refugees that said "New Normal"... I'll make you one.

xoxo

Leslie Green said...

I got a beautiful quilt in the mail today to hang in our new living room and I thought of you and all the wonderful quilts you got from folks to help you feel loved and warm. What a great thing. Thanks for helping me see so much good in the world!!

Barbara said...

Hi Jenny Fur, I love the way you write!!!! It's like you are right in the room with me. I told your Mom today that I haven't written you in awhile because I talk to her everyday but it doesn't mean that I don't think about you all the time, and love you to bits.

Laurel said...

temporary.
temporary.
temporary.

it really really is, my dear.

you're my hero.

Lesli said...

Jenny, once again, thank you for letting us know how your days are going. You continue to amaze me as you adjust to how it is. And temporary is a good thing! You will see this through with grace and dignity. Hugs from me.

Shannon said...

Thinking of you and praying for you. Sending love from me and also the stake Relief Society. You're a rockstar!!!

Laura said...

It is really so great to see you back at home and to hear your voice. I love that term: "temporary normal." I'm totally going to use it. (I have lots of those, every few years when we move.) Keep blogging, and hang in there, friend. Much love and hugs to you!