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.

A quick question before you go: Do you think I have cancer?

I realize that I haven't posted in a while; my apologies to anyone who's been worrying about me and waiting for an update. I'm just going to go in chronological order here, starting with a post from early October that I wrote but forgot to "publish."

 From early October:

The upside to having an ER doctor for a husband, is that when he's had a couple of drinks and he's heading out the door to walk over to a friend's house to hang out and watch the rest of the Angels game, you can slip a medical question casually into conversation.

"Oh, hey... before you go... when the doctor called and said that he hadn't contacted us about the blood test results yet because he was waiting for the fle...cyt... what was it called?"

"F----." (He's not here, and I don't remember, so F---- will have to do.)

"Yeah, that. He said that was the one that checks to see if I have leukemia or something like that. But he said the other tests seemed normal. But didn't he already say that cancer wasn't really a concern? So how important is this test? Does he think I might have cancer?"

"No. You don't have cancer. He can't give you your test results until they're complete. So he can't really say anything yet."

"So I might have cancer?"

"No." He's smiling and looking reassuring and also having those laughing eyes that say I'm so cute and he loves me even though I'm being neurotic.

"Are you just saying that because you're my husband and you're being protective?"

"No. I really believe you do not have cancer."

"Are you just saying that because you want to believe it or because you know it's true?"

Those laughing eyes again. "I believe it."

"So I might have cancer? Why is that one test taking so long to get done?"

He explained that it basically magically separates my blood cells and they go through a tube and they can see what each one looks like. If any of them have cancer.

Something like that.

"So why is it taking so long?"

"Because it's a hard test to do."

"Not because..."

"If he saw something to be concerned about in the other tests, he'd have called."

"Alright, fine. Go watch baseball."

I'm not really worried. I can't possibly have cancer. I don't think it takes them that long to figure that out. And something would have been weird about one of the other tests, right? So it's not that.

Which means it's going to be my meds.

Because it sounds like the other tests ruled out lupus and rheumatoid arthritis or something like that. So then it's some kind of cancer. Or my meds.

Tuesday, November 04, 2014

Voting Day: Age 4

Ella's first election, age 5 months

Ella's second mid-term election, four years later--age 4

Ella's first election was on Tuesday, Nov. 2, 2010.

She still has those dimples and that crinkle nose smile, and this year--four years later--we spent the evening watching the returns while she was asking me questions.

Looking at the screen packed with head shots and stars and stripes: "Are they ours?" "Is ours the boy or the girl?" "They're both girls." There's three boys." "Did we vote for them?" And cheering.

"Are they presidents?"

"No, they're Senators."

"What's a Senator?"
I explained that there were teams called Republicans and Democrats and that we were Democrats. (Though I do expect that she can make her own choice one day, I think we can do the corporate We for now.)

It was the best returns party I've hosted thus far.

For her story at bedtime, I began, "Once upon a time, there was a fairy princess and she and her mommy and daddy went to the polls to vote for the Line Leader, and the other people that would be leading them all. Because they knew that there were millions and millions and millions of people and they needed a few people to be their leaders and help them get things done...." I told her this whole story about the voting process and winning and losing and learning to work with each other even if we didn't vote for them. When I came to a point where I could say "the end" (not really believing I'd gotten away with it), she wanted "one more story like that."

"Once upon a time, there was a group of friends..." and I named all of her six classmates. "They had a Line Leader, and a Snack Helper, and a Supplies Helper, and a Teacher Helper."

"That's just like my school!"

"Yes, it is. They all had their jobs to do. The Snack Helper made sure everyone had enough to eat, and the Supplies Helper was supposed to make sure everyone had what they needed so that they could create things together." I started listing off school supplies, and she added a few I had missed.

"The problem was that the Supplies Helper wasn't sharing."

Oh, her eyes! How can they possibly get so big at the very idea?

"Everyone could see that the Supplies Helper was piling up the pencils and not giving them to his friends when they needed them. The Line Leader, Snack Helper, Teacher Helper and Teacher talked about the problem and decided that they should ask the Supplies Helper why he was doing that. He said it was because he was afraid that if he shared the pencils, then he wouldn't have a pencil to use when he needed one.

"'That's silly!' said the Snack Helper. 'I share my food with my friends and I still have enough for myself.' After a while they were able to convince the Supply Helper that if he gave pencils to other people he would still have a pencil that he could use. He let them have pencils, and then they were all able to work together with the supplies that they had and they made a beautiful house with the paper, cardboard, tape, glue, stickers, crayons, and scissors. Everyone was happy and the Supply Helper realized that he still had a pencil that he could use, too. The End."