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."

Monday, September 29, 2014

Groggy v. Nervous Wreck

Justin got home from work at 2 a.m.Sunday morning.

I'd been tossing and turning so much that the covers were rolled into a giant ball at the foot of the bed.

For days we'd been discussing the availability of taking my anti-anxiety meds, and I was planning to let myself take half of one the next time he was home and I didn't have to drive anywhere.

2 a.m. seemed like a good time to give it a shot. With him here, I didn't have to worry that I wouldn't hear or respond to Ella if she needed me in the night.

I slept solidly until Ella woke up at 7 a.m. (God forbid a kid who is grumpy when awoken at 7 o'clock school three days a week for preschool sleeps in on a day that we have no where to be.) Justin had to sleep until noon, since he had to work another swing shift, so it would be a true test of my anti-anxiety-medicated parenting skills with backup in case things just weren't going well.

When he woke up, he asked how I was doing, and I said I felt much calmer. That it was such a relief to be awake and not feel so on edge all the time.

I told him that I'd been so worried about not being there for Ella if I were groggy, that I'd forgotten that I was not really present for Ella when I felt so anxious, either. I realized that she'd be much better off with me groggy than me losing my mind.

Because that's what anxiety is. It's losing your mind. I was being sucked back into so many bad memories, analyzing them and wishing they'd gone differently.

I was getting out of the car in the garage and flashing back to memories of my teaching days, when there had been conflicts with students, or teachers, or administrators, or friends. I was angry or disappointed with myself for what I'd said to people in 2004 or 2005. This, while I was unlocking the garage door, getting Ella out of the car, unloading the groceries.

It's called ruminating.

I was getting irritated with Ella for being four--fellow parents know what that's like, but I was feeling worse about it, having a shorter fuse, and hearing her say things like, "Why are you rushing me?" when I was trying to get her buckled into the car and all I wanted was for her to put her arms through the harness part of the seat belt so that I could get out of the 90 degree garage and into the air conditioning.

People were asking me how I was doing, and I was saying, "Fine," but not remembering to ask them how they were doing in return. I know I was saying "fine" in a strained voice, and I could feel the vacant look in my eyes, the I'm-lying-but-you're-not-really-asking-and-we've-just-run-into-each-other-so-I-can't-tell-you look. It was Target, church, the greenbelt, the park. No one really wants to know the truth when they ask that question as courteous greeting; the truth is not the courteous response.

Justin told me he knew, that he could tell by looking at me over the past week that I'd been struggling to hold it together.

My heart sank. I'd hoped I'd been doing a better job of getting by. I'd hoped the only sign he'd seen was me actually using the words to tell him that I felt "so funny," "so weird," "so off," "so anxious."

But of course he knew.

The night before, at a church pizza dinner with other families, the one friend whom I'd told about the leukopenia diagnosis and ensuing anxiety asked me if I'd gotten any more news. I told him no. He asked me how I was feeling, and I said, "Not good," shaking my head and feeling the tears almost surface, hearing the catch in my voice. 

"I can tell," he said.

Oh, no.

So, Saturday night I took half a pill and slept for five solid hours.

It was like pushing a reset button. I have now survived two days without my heart racing, without my palms sweating, without my throat tightening, without feeling like I am doomed to falling into a relapse of clinical Major Depressive Disorder and Anxiety. 

I put my head down for a minute while I was folding laundry and Ella was with Justin in his office and I fell asleep. I let her play on the iPad while I closed my eyes on the couch for a rest on the couch. (Remember, she had a fever, so she legitimately had to stop dancing around and rest, too.) 

Justin's off today, but when he works later in the week and I'm solo-parenting with Ella, I'm not going to feel guilty for letting her watch an extra episode of Mickey Mouse Clubhouse or have time on the iPad. 

Ella will survive extra screen time unscathed. It won't ruin her childhood. She won't remember that time she was free to zone out with electronics and feel sad about it.

If I am clinically depressed or anxious, it will be a lot more damaging to my relationship with her. We'll remember that time I was mean to her. We'll remember that time I made her cry again and again. We'll have a harder time pulling out of these hard times together. It wouldn't ruin her entire childhood, but it wouldn't benefit it either--that she spent less time in front of a screen and more time with me frustrated with her. 

This is the way it is, for now. 

The upside is, now that I'm not crazy with anxiety, I don't think it will be this way forever. I'm still very worried about the leukopenia. The doctor said, "I trust you won't be letting people cough in your face," but I'm a mama with a low white blood cell count attempting to stay healthy while parenting a kid who isn't always covering her cough and always needs help with Kleenex when the sneezes are just too gross. I'm scared (and pretty sure) that he's going to tell me to switch up my meds, which means I'm less worried that I have cancer or a chronic blood disease in addition to my chronic mental health disease, but still very worried. 

Changing my meds means changing my brain chemistry, and til all this started happening, my brain chemistry was working just fine. Changing my meds is like telling a diabetes patient that she has to change her insulin dosage, even though her blood sugar has been level for years. It doesn't sound like a great idea.

Luckily for me, I have a psychiatrist who sent me an email on Sunday evening just to check on me. She'd reviewed my chart and seen a possible correlation between my meds and my white blood cell count. She planned to work with my hematologist/oncologist to fix this problem. 

There's hope. Which is nice, after feeling hopeless for so many days. 

In the meantime, I haven't taken another anti-anxiety med since 2 a.m. Saturday--36 hours or so--and I can already tell I'm going to need one soon. Fortunately, Justin is off today, so he can do the driving while I get through another day without losing my mind.

Friday, September 26, 2014

The Worldwide Waiting Room

So far, so anxious.

Justin was able to find records of my blood tests as far back as 2004. Looks like I've always had a low-end-of-normal level of white blood cells. White blood cells are the ones that fend of illness, so it's pretty important to have enough of those around. Mine have only gotten below normal in the past two years.You'd think I'd be sick all the time, but Justin says the ones I do have must be really strong. I think he's joking, but I like the image of those few but mighty warriors bouncing around in there, hammering away at invaders.

It turned out it wasn't as easy to get my history of prescriptions since 2006 as my first call with the pharmacist led me to believe. ("Sure! Just come in and bring your ID and we can print it out for you.") The local pharmacist was only able to print out the list for the past 12 months, which doesn't help at all. However, I called the Privacy Desk and if I could recall all of my street addresses for that period of time, she could get it right out in the mail tomorrow morning. I spent 25 minutes on the phone with the woman while I looked at Google Maps and tried to remember the directions to an apartment we lived in for one year eight years ago. She finally just gave me a hint, figuring that with my unique name, my date of birth, and the accurate addresses for three other locations, I was probably legit. Then, I realized that I had been using a different national chain pharmacy during the most crucial two years of history--when I started working with a psychiatrist. Cue the redo, except this time, the Custodian of Records requires that I mail or fax a signed and dated written request for information. So it will be 7-10 business days from this morning before I can even give my hematologist/oncologist enough information to start figuring out whether this leukopenia is caused by any of the medications I've ever taken.

I was freaking out before I called the pharmacists to get these records. I absolutely hate making phone calls, so the entire time I was making Ella's peanut butter and jelly sandwich while taking deep breaths and trying to relax, I was also dreading calling. I decided that if I just got it over with as soon as Justin took her to school, I'd feel better because I'd have done all I can do for now and could just move on and relax until the next step. Whatever that might be.

Then, I didn't feel better.

I'm worried about the anxiety I've been feeling since I got the referral to the oncologist a week ago. I realize the cruel joke of being anxious about anxiety, but that's the glory of a mood disorder: it's not at all rational.

I know that it's totally reasonable to be anxious about a medical problem and an unknown diagnosis--especially when you're referred to a cancer doctor.

However, I thought that after the hematologist/oncologist appointment I would feel calmer. The doctor didn't ever say he thought it was cancer. He thinks it's meds related. He's doing a bunch of other blood tests to rule out things like lupus, rheumatoid arthritis, and hepatitis. It's not the most comforting news ever, but cutting out cancer as a possibility should be comforting, right?

I'm worried though. I have this tight feeling in my throat, my heart feels like it's going faster than usual, my hands are a bit shaky, and my palms are sweating. Plus, I have a tension headache everyday.

So, like any hyper-vigilant mood disorder patient, I emailed my therapist and psychiatrist to ask for help. What should I do about my meds? I have taken anxiety medication in the past, but it really knocks me out and I don't think I should be alone with Ella--leave alone drive her around--if I take it. I'd love to just lie in bed, but obviously that's not a mom-option. I can't remember the Cognitive Behavioral Therapy things that might help. Being mindful is really quite a battle right now. Any suggestions?

There's a reason I keep seeing these people even though it's been over six years since we lived in San Diego. It's worth it to drive two to three hours to have doctors who respond to emails and texts within minutes to an hour or two from when I reach out to them for help. Since I've been so stable all these years, it's been fine just going to an appointment every month or two. 

The therapist reassured me that it is reasonable and appropriate to have worries and be anxious. She reminded me about observing my feelings instead of worrying about them. The theory is that if I can drop worrying about anxiety and just observe anxiety, I'll be ahead. She is pleased that I can identify what is happening in my body--the tight throat, racing heart, sweaty palms, tension headache. Awareness of body and thoughts without getting attached to them--just letting them come and go--is a helpful practice. "It just is what it is. No judgment. Be kind and compassionate to yourself and breathe."

My psychiatrist suggested taking a very small dose of anxiety medication and seeing if that doesn't sedate me too much. Maybe tomorrow, when Justin's home (albeit asleep between working swing shifts) and I can just refuse all invitations that would involve driving. Just enough to take the edge off.

The reminder about observing anxiety and feelings rather than getting swallowed by them was really helpful. Somehow seeing them and letting them just be makes them less powerful--sort of an, "Oh, look. There's anxiety going by again. Yep. That's it." The alternative is, "Holy shit! There's anxiety again! It's going to get me! I'd better run! There's no where to run to! I'd better hide! I can't hide! Oh God! It's going to get me! I can't get out of it!"

It's the difference between looking through the zoo fence at the tigers while they eat or jumping into their space and trying to steal a bit of their food.

I'm trying to avoid the anxiety meds because I usually have to drive Ella around. We'll see if I can manage over the next few days. I just worry because I don't want to get stuck in this anxious mode in my brain chemistry--and it's so easy because it feels so familiar. Awful, but familiar.

The worst of it is,  I can see already that it's affecting the way I interact with people. I'm totally distracted. I'm exhausted. When they ask, "How are you doing?" I want to tell them, but no one really wants to hear, "I'm waiting for a diagnosis and fending off a bout of clinical depression and anxiety that I don't really have time for. Also, Ella wants a snack."

I can feel the bubble forming around me that keeps me from being all the way present, all the way engaged, all the way me.

Tuesday, September 23, 2014

Getting the referral and a babysitter

This blood count thing has been happening, and I haven't had the nerve to post about it until tonight. You can catch up by reading this series of messages to a friend.

Thursday, Sept. 18, 2014
An email to a friend:

So... this is me asking for another favor and trying to keep from freaking out. 

Could Ella hang out with you guys on Monday afternoon for a bit? I have a doctor’s appointment at 4 p.m. at the hospital and Justin is going to come with me. My mom is still sick, so she can't do it. I have a few other options, so if you’re busy I can ask someone else. 

This is the not freaking out part: My annual blood test results showed a low white blood cell count (2.5 from last year's 3.3, which was already low compared to the normal range of 4.3 to 10). My doctor diagnosed me with leukopenia and referred me to an oncologist, which Justin says is just because they are the doctors who are hematologists--the blood specialists. My problem is that you don't see the word oncologist on a referral without freaking out. A lot. Justin must be a bit worried, too, since we opened the mail right as we were heading to dinner Wednesday night and we didn’t just go to dinner right away. Since there were still 30 minutes left in the business day, he called a doctor that he works with and likes at his hospital and made the appointment. Granted, that might be because I told him we had to, since it was still business hours and he was at home and if we didn't do it now, we'd put it off and it wouldn't get done. 

But, still.

Oncologist? I really can't keep letting that word bounce around in my head unattended. 

The other reason I think he's worried is that I keep asking him what it could be and he just says it could be lots of different things and he doesn’t know, but doesn't list them off. I really think there are just too many possibilities. Plus, he knows I'd WebMD them all, so that's probably for the best. He did say, however, that the reason he made the appointment with a doctor he likes and whose partners in that group he also likes (which matters in case I have to see someone else someday) at the hospital he trusts is that in case I do need to have something done, I’m there. I think he mentioned a bone marrow test, which apparently is quite painful. I don’t know. I asked what they might do, and he said run some more tests, probably draw some blood, and do a smear, and then that thing about the bone marrow. 

So, not freaking out. These are all just possibilities. Not freaking out. Really. He’d probably tell me I’m being silly for worrying about it. And I’d tell me not to borrow tomorrow’s troubles for today. Boy is it easier to dole out advice than take it! 

Anyway, that is all. Probably no big deal. Right? 

Sunday, Sept. 21, 2014
A text to another friend:
In case you were wondering, I'm in high inner-freak-out mode. Justin knows I am and is scared too, but insists it's not cancer, based on the data from the other labs. So that's kinda comforting.  We're hanging out a lot with neighbors this weekend, so the distraction of friends helps. Pretty sure otherwise I'd be a weepy puddle. I am so restless and fidgety as it is. 

Monday morning, Sept. 22, 2014
Another text: 
Happy Monday! Just telling you because you're one of my prayer warriors: 

In case you were wondering, this would be a perfectly good day to take a klonopin and hide in my bed until I was magically transported to the doctor's office while holding Justin's hand. But, since anti-anxiety meds make me sleepy enough to do just that, I suppose I'll just go about my business with this anvil pushing on my chest. Another deep breath.

Monday evening, Sept. 22, 2014
An email:

OK. So here's the scoop so far:
The hematologist/oncologist thinks the leukopenia is probably medically induced, since I'm so healthy otherwise. So, the good news is he doesn't think I have cancer.
Of course, to figure out exactly what caused my white blood cells to drop so low, there's still a lot of research into my medical history and a lot of other testing to do. Yesterday, they took blood to rule out lupus, rheumatoid arthritis, Hep B & C, and probably some other things I do not remember.
In the meantime, we have a lot of homework to do. We need years and years of medical records to see when my white blood cell count got low and whether it correlates with a change in medications. Justin and I don't remember it ever being a problem before last year. Fortunately, we have copies of most of my CBCs filed in the house, so we'll start there. The bad news, is that if it is my meds, we'll have to change those up. That scares me, too, since I've been stable for so many years and don't want to screw that up. 

Luckily, the pharmacy can print my prescription history out for me, so I don't have to call every psychiatrist I've had since 2006 and ask them for a list of all of the meds they ever prescribed me.
I'll let you know more as it happens. In the meantime, I have to try to "avoid sick people." Awesome with a preschooler in my world.