debutaunt.com

Meds. Well they just suck right now

It's been one of those days.

Skip it if you can't take pity rants.

Sometimes I wonder what exactly I think I'm doing. I am out there. And I feel like my pleas fall on deaf ears. I often wish I could just disappear for a while and not ask anyone to donate blood or not ask to raise money for my expenses, for my cause, for Team Zoe. Sometimes I want to leave cancer behind me.

I think, why am I working so much? Why do I feel so driven to do this? I should just be sitting on my ass, eating health food, getting my nails and toes done and working out at the gym like the rest of the soccer SUV moms. I wish I had an income that didn't make me check my bank account every day. For someone who isn't working, I feel like I'm working now.

Many days I just want to say let someone else do it. I'm done. I feel like sometimes I'm spinning my wheels and people are tired of the promoting the begging the cause. People are tired of me.

Stop talking about cancer. It's boring. You aren't your disease. I can't even convince some of my best friends to sign up ONLINE for God's sake to register FOR FREE on the national bone marrow registry. I don't know one person that I know in real life who has actually signed up because of me. Because they heard me. Yes, they all have good intentions, but has anyone actually done something? I know a few who are regular blood donors. D1 is the bomb. She used to drag people with her. Her support has no bounds. I never felt pity from her, because she was always a woman of action.

And sometimes I just want to say.. don't do this because you feel sorry for me or grateful that it wasn't YOU who got cancer, do it because it's the right thing to do. Because you are able. But you know what? I never have donated blood in my life (other than the 29309230 lab tests)

The ONE time I was supposed to donate blood I didn't. You know why? Because I had been working with the Katrina evacuees for a project at work and I was exhausted from two weeks of 16 hour days. I cancelled my appointment with the blood drive people that day because I just couldn't hang. Ironic huh? Had she done the blood test, they would have most likely caught my leukemia then. The donor registration was with MD Anderson at our offices downtown. I suck.

I don't know why it feels so urgent. I think it is because I still feel so fragile. So vunerable. I hear about so many people relapsing and dying that I wonder... Am I just here until that day? The day of a bad test result? The day I get the start of my fatal infection? The day my body rebels against the medicines designed to protect me?

I wonder just how long I can continue to swallow a pharmacy every day. I wonder how much longer I will want to.

I hear Lance Armstrong say that cancer made him the person he is today, and that he was grateful. And I think, did it do that for me? Or did it just clarify a purpose? And then sometimes I think... I didn't want this to clarify my purpose. I didn't need this. The uncertainty. The worry. And the cause. Did I really need to take on this burden? Is it a burden or a calling? Or should I be like the other cancer survivors who just go on and get back to their new normal. Work. Parenting. Priorities. One that isn't 24/7 cancer.

Lance is a gazillionaire. Yes he has to worry about relapse or secondary cancers like the rest of us, but I have this deadline date in my head - October 2008. The month my insurance cobra runs out. So by then I need to find a job with bennies. I do not want to go on medicadecarewhatever. I don't want to have more issues with meds than I already do when I get harrassed by my drug plan and bill collectors on my hospital bills. I hear the mess my folks deal with when helping people with their mediwhatever nightmares. Or to hear stories of other patients that deal with uninsured drugs, or second-class care.

I know I could find a job like *snap* if I wanted one. But do I want to get back on that track? Back on the stupid corporate hamster wheel track that I was on before. With no purpose? Dreading to go to work every day. Missing Zoe and having to send her to school sick because I have some fucking asshole that tells me I have to meet a deadline.

And yes, they sucked ass. I felt so guilty all the time. Guilt over missing work. Or guilt over tylenoling up my poor 4 year old so I could work. Their stay home wives took care of their sick children. My stay home husband was non-existant. I was a single mom who had no one else to take care of my child when she was ill.

This is why daycares are breeding grounds for illness. Sometimes there is NO option but to send your child in with a runny nose. I couldn't keep Zoe home everytime she sneezed. The week I got diagnosed I had 4 unpaid days already because I had used up all of my sick leave and vacation time with her bronchitis.

I got a bad performance appraisal from my office because I missed too much work and was "unreliable." But you know what... I WAS SICK. OR MY KID WAS SICK. OR WE WERE ON THE VERGE OF SICK. I felt so much stress and I swear sometimes I think it caused my body to just say FUCK YOU! We give up!

I literally went into my doctor the week of my diagnosis and said "I think my immune system is saying fuck you." Verbatim. They gave me some antibiotics, a piss and blood test and sent me on my merry way. That was Wednesday. Friday I had a killer headache, and Sis #2 drove me to the ER, I kissed my lovey Zoe goodbye, and my life was forever changed by a white count. Funny, my regular doc's office called me with this hesitant voice on Monday. "Uh, Miss Debu, we got your blood test results back and we need you to come back in to recheck them." I said, "Let me guess. I have an incredibly high white count? Well no worries. I'm currently in MD Anderson and I'm going to be starting chemo tomorrow."

So a fun thing to do when I first got diagnosed was to call my supervisor and say, "I have leukemia. i'm calling in cancer."

So I struggle with this time in my life. I enjoy fundraising and think it's very important to tell people how they can help. I feel such obligation as a survivor to try to help build a future for other cancer patients. And to eventually help rid the world of cancer patients.

But sometimes I just want to sit down and read a book. I have a whole bookshelf of wonderful books that are just collecting dust. It's like my old job. I would read all day about sediment and soil sampling. People would say, "oh, you have a degree in English, you must be so well read."

But no. i'm not. I have a degree in WRITING, not literature. I'm not well read at all. Because when you read about polybiphenals and mercury contamination, the last thing you want to read is War and Peace. I had to have brain junkfood aka People Magazine.

I can do this. Even if I'm too tired to finish this entry.

No asignment

Posted by debutaunt at May 10, 2007 01:58 AM