Saturday, November 15, 2014

It's not nothing. It's not no big deal.

The results everyone has been waiting for came in about two weeks ago. I took the call when I was shopping in Target for birthday presents for a bunch of Ella's friends, standing in the scooters and trikes aisle of the toy section.

It's not cancer, rheumatoid arthritis, lupus, or some other weird autoimmune disease that could kill me. The oncologist/hematologist said that he didn't think it was necessary to take a bone marrow sample to do further testing because none of the blood tests indicated a need for more research. He's pretty sure that one of my psychiatric medications is medically lowering my white blood cell count. Basically, my leukopenia is a side effect of managing my mental health disease with drugs.

My brain chemistry problems are causing my blood chemistry problems.

To the general public, I imagine this sounds like a quick fix. Good news. Nothing to worry about.

Not really.

Let me explain.

When I went to San Diego to see my psychiatrist on October 22, I had not yet heard from the oncologist. So some kind of blood cancer was still out there as a possibility. It was an unlikely possibility in most people's opinions, but it was still very real and stressful and worth worrying about.

She explained that she had reviewed my chart, which includes seven or so year's worth of medications and blood tests. She had also done some reading and recalled one or two other patients who had been diagnosed with leukopenia and corrected the blood condition by changing their medications.

She was willing to start working with me to titrate (slowly lower until it was zero) the amount of the medication she suspected was the culprit (let's call it L, for the sake of simplicity and because I don't like to name my meds because everyone reacts differently to different meds).

I became very uncomfortable as we discussed the option. Like viscerally uncomfortable--palms starting to sweat, heart beating faster, dry mouth uncomfortable.

"Can we wait? Because we still don't know for sure that it's the medication. It could be something else. It could be cancer. And if it is, and we're messing with my meds, I'll have two problems instead of just one. And I'll be messed up as it is; I don't need my meds to be messed up and have my brain messed up, too. I'll have enough to deal with."

She agreed we can wait.

"It's going to be the meds, though, isn't it?" I said. "Which isn't really better. Other stuff can be fixed."

Tears sprang to my eyes, "I mean, I already almost died from this!"

It was the most bizarre conversation, gallows humor, weighing the differences between a chronic blood disease or cancer v. chronic depression and mania.  Bipolar II--a milder version of Bipolar I (so, not what you see in movies), but still bad enough that I was going to kill myself. Still potentially lethal. Still chronic--as in lasts forever, doesn't go away, long term problem.

Given that I have recently lost a young student and friend to cancer and have a college friend with Stage 4 metastatic breast cancer who is my age with kids, it feels weird--bad--to make these comparisons. But we had to. Some of them were silly--like I said, gallows humor.

"People just don't know what to do when it's depression. If you have cancer, people send you flowers! No one sends someone with depression flowers!" she said. I thought of the people my mother had sent flowers who had cancer. True.

So, I feel bad that I haven't posted. I know a lot of you have been worrying about me, and by writing about my leukopenia diagnosis and testing, I made myself vulnerable to you. I'm grateful for everyone's concern and sorry that not knowing has been tough enough for you to call my mom to ask about me or to give me those concerned looks and ask me--really ask me--how I'm doing. I do so  appreciate everyone's concern and especially the offers to help with Ella if I need it.

I want to be jumping-up-and-down happy that I don't have cancer, but I just can't.

I've been stable for almost eight years. Stable--meaning I haven't wanted to kill myself; I haven't been unable to get out of bed or off the couch; I haven't been unable to hold a job (during Justin's residency, when I was employed in LA, I never had to call my doctor to get a note to my employer saying I simply could not work anymore because I was sick); I haven't been unable to care for Ella; I haven't been unable to take care of the house.

When I'm told that part of what is in my formula for stability might have to be taken out, it is reasonable for me to worry. I can't take it lightly. It's not, "Oh, big deal. It's just my meds."

It's not, "At least you won't die from that." Or "At least no one dies from that." Or "Great! So it's no big deal then." Or "Great! It's nothing to worry about, then." Or, "Cool! It's a simple fix."

It's more along the lines of, "Holy shit. That really sucks. I hope you don't die from that. Let me know how it's going and if there's anything I can do to help. I know things could go really wrong and it could be hard on Ella and really hard for Justin to deal with because he relies on you to take care of her and he'll worry so much and he can't just take time off work to take care of you (and Ella!) if you get really sick."

So, I'm sorry I haven't written. I know everyone's wanted to breathe a huge sigh of relief and I've been holding out on you. It's just that I'm still really kinda scared. Sure, I'm glad I don't have to face a new demon and fight a new fight and learn a new method of survival. But I know this disease. I know what it can do to me, I know what it has done to me, and I know what it's like to be dying.

That's what suicide is. It's dying. There's so much said about it being a choice, or people who kill themselves being quitters, or selfishly not caring about anyone but themselves, or being cruel to the people they leave behind. Or no one seeing it coming. Or it being a sudden decision.

But suicide is the ultimate result of a person's brain being ravaged by a disease that does not relent. Suicide happens to people who don't seek help, but it also happens to people who do seek help. It could have happened to me, and I had family and friends who loved me (even if I didn't believe it then), I had private therapy, group therapy, Cognitive Behavioral Therapy (CBT), two psychiatrists working together--one in the CBT Outpatient Program and one private), and pastoral counseling. I also had a very detailed plan for how and where I was going to die. Even after months of all that treatment, even though I didn't have a plan at the beginning, in January 2005, just a deep, inconsolable sadness, I got worse and worse and worse and by April my thoughts of death became so serious that I was hospitalized for eight days.

Yes, I am glad I don't have two chronic diseases. I'm just not liking the idea of messing with the one I currently have under control.

Here's the glimmer of hope. The oncologist doesn't seem too concerned about my low white blood cell count. He and my psychiatrist still have to talk to each other about the best course of action for me.

Am I at greater risk of illness or death from physical or mental illness? It's hard to say.

1 comment:

Anonymous said...

I'm so glad you don't have cancer, or the long list of other illnesses.
I've heard you speak and write so often about the balance of your medications and my heart is beating faster reading your entry because I know it is a scary unknown that you are leaping into.
Now this has come to my mind:
It may be hard, to get from here to the next chapter where your medications are figured out and you feel stable again. But it will happen. Your wise doctors have figured it out before, and continue to tweak. You can do it again. You and your net (monastery).
Love you.
Aarti