Saturday, September 5, 2009

Lady in Waiting

Where is my life? Fuck. I am getting so fed up with patiently waiting to get better. I waited for a year trying to find out what was wrong with me, I waited through all my chemotherapy for the day it would be over, patiently sitting in a chair for 6 hours a day attached to a pole getting chemo, blood and liquids. I waited 6 weeks to find out whether my brother was a match for my stem cell transplant. I anxiously waited 9 weeks in total for my hospital incarceration to be over and then waited for 100 days as an outpatient so I could go home again. I waited for my medications to be taken off, especially my steroids because they made my life hell. Finally I began to see an improvement.

Then I was put back on the steroids as the graft/vs/host began to wrack my body and my liver. I waited in great pain for my graft/vs/host scarred vagina to have surgery and then waited to heal. I waited for the chemo brain to clear. I waited another year to be taken off the steroids again and waited another year for the negative effects to wear off. Now I wait for the new medications to work so I can sleep normally and be able to work again, to get back to my life.

I think the hold button is stuck.

I worked so hard all summer and months before to build my strength so I could start putting the pieces of my life back together. I thought for sure I could be ready to get back to work by the end of the summer. No such luck. My GP gently said, "No". She wisely stated that I would crash and be set completely back, I have to get my sleep deprivation under control first.

I was heartbroken.

I have worked so hard to get there. Where? Anywhere. This is not me. Waiting and hoping and hoping and waiting. I am a person of action. I fix things. I tackle mountains. This is bullshit.

My Dr. was right, I would crash, I'm not capable yet. I guess I'm glad that she stopped me because I would be crushed if I tried to get back to work, failed, ended up in much worse shape and wrecked my employers confidence in me.

A lot of what my GP has been doing with me is improving my quality of life while I cope with the physical hurdles. Now Why does writing that make me want to cry?

Maybe it's just that kind of day?

So again... I wait.

6 comments:

Anne said...

God, you have really been through hell....are living through hell now. I have been living a similar life for the past 5 years since my diagnosis...it is soooo hard!

I don't know what to say to make it any better. I just had a fucking rod put in my leg b/c the canSer there was about to cause a hip fracture....when I say it like that it makes me want to scream! It is one thing after another & I wonder too if I will ever be able to have the full life that I want....if I will be able to work....to exercise the way I would like....to be truly independent. It really is a bitch.

We don't really have much choice though. We have today & if we spend it focusing on the wait, we lose it...at least partially. I don't want to waste a single day so I try my hardest to see all of the good. There are things we can do right now...that we don't have to wait for. Like you writing this blog. It helps people. I know it helps me. You inspire me Ms. Hoop Dreams!

We do need to be honest about our anger and acknowledge our waiting and our loss. But that has to be a small percewntage of our time....the rest of the time we owe it to ourselves & the people we love to focus on what we can do....and working toward what victories the future may hold

Thank you my friend!

Jennifer/Sweetlife

Dennis Pyritz, RN said...

Special invitation to leukemia bloggers. This month’s Book Club selection at www.beingcancer.net is by leukemia and transplant survivor, Evan Handler. Handler is a noted Broadway and television actor best known as Charlotte’s boyfriend/husband in Sex and the City. He has also appeared in Lost, The West Wing, and Studio 60. This funny and poignant book covers his diagnosis with AML, his remission, relapse, and treatment with bone marrow transplant at John Hopkins and Memorial Sloan-Kettering. You can order a new or used copy of the book from my site. Discussion began today and will continue for the next three Mondays in September.
Take care, Dennis

Kiki said...

Dear Ms. Locks,

Your entry is so poignant. Cancer is an original. No other disease is so clever, so crafty. It puts us in this bubble like you say that keeps us waiting...

Kiki

Daria said...

Oh man it's a tough journey ...

Caroline said...

The hold button on life is stuck quite possibly. I didn't go through nearly as much as you did but am still waiting 2 years & 3 months later for my life to get back to normal. I am not a patient patient anymore. I want to know how long until I am better. Or where is that damn magic pill to fix me. Screw being patient. That's for healthy people.

BaldyLocks said...

Agreed, Caroline. We need to go out and kick some ass! And if you ever find that magic pill, get one for me too!