Nothing’s Okay But It’s All Okay

You guys, I feel like a hot mess. In fact, my health insurance company has pointed this out by sending “helpful” pamphlets on combating anxiety, as if it were an army one could see and defeat. At least I haven’t gotten a diabetes one in awhile. That’s exasperating when it’s based on weight alone and not evidence. Anxiety is one of the things that’s not okay but that is going to be okay come hell or high water. 

Once I saw that I was losing sleep and reluctant to do my public facing job, I took myself back to the doctor and what she prescribed made me gain a lot of weight, fast. My eating habits didn’t worsen and I started exercising a lot more so that’s frustrating, to say the least. We talked, I cut back on the dose, and I’m hoping that the weight comes off, even if it’s not as quickly as I put it on. So it’s okay, even though it’s not okay. The thing is, the week we cut back, the anxiety got worse. On the plus side, I’m still okay enough that I can look the anxiety in the eye and name it which is better than it was before.

And to be honest, I could be eating cleaner but I’m watching my dog go downhill fast and I’m coping as well as I can given that he’s my first born, my best dog, my constant comfort. We put our mattress on the floor so that he can get up on it. I can’t get off of it in the morning because I am old. So it’s not okay. Losing him, stiffly struggling to get up in the morning (both of us), but it’s okay because I don’t have to worry he’ll puncture a lung falling off the bed or listen to him whimper and fail to get on it. I can’t help the rest of his problems, but I can do this. 

So perhaps saying nothing is okay is an exaggeration but it sometimes feels that way. But it’s all going to be okay, one way or another, now or eventually and hey, maybe those mindfulness classes paid off after all.

Actually, NO

This is how I feel about my body acting like an asshole. I’ve mostly gotten over quirks I can’t do anything about. We’re not at war, I’m not bemoaning my brain chemistry, I’ve tried to internalize that there is not a normal. My naive hope that my body and I had reached peaceful relations has come to an end as I find myself suddenly under siege. Perimenopause. What the actual fuck. WordPress doesn’t even recognize it as a word, that’s how lame it is.

I went to the doctor. I know! I went willingly. Why, I asked? Why this particular bullshit? Why now? Why do I itch? Why am I waking up at night shivering? And don’t even start me on hot flashes. What are these things? I mean, I don’t have enough strong language for a hot flash. Estrogen dominance, she said. But, and I respect this, she had profane feelings about hot flashes, too. The commiseration was nice.

I work in a place with plenty of women 5-15 years older than I am and a fair number wield cardigans and fans. I refuse, friends, to fan myself in a meeting. But if this is any sort of warning bell, I fear the first pre-meeting/class flash. And I’m angry. Mad as a hornet, I said to the doctor. She said, it’s no use, it’s not helpful. She’s probably right but it makes me feel better to rage around like the running of the bulls for a bit.

It’s not grief over the end of child-bearing years, though I suppose that’s a pretty common thing, it’s absolute frustration that I have no control over this phenomenon without some sort of medication. Or, of course, the advice for anything wrong with you – more greens, less refined sugar, more exercise, more sleep, less stress. Are you kidding me? I need the refined sugar to deal with the broccoli and cauliflower.

Mad as a hornet. And not a damn thing I can do to stop it.

Life Insurance Woes

At the end of last year, Debra and I put on our adult pants and went to a financial advisor. Said advisor also sells life insurance policies which is how my extended family came into a relationship with him, rather than actually having money. Any constant reader could probably sum up my distaste for doctors in one or two bits of profanity, but for you folks new to the scene or perhaps just wearing those handy rose-colored glasses, I have a lifelong struggle with anxiety and medical practitioners. In fact, should that person even have access to a blood pressure cuff (acupuncturist and dentist, I’m looking at you), I have access to a panic attack which I’m only able to avoid most of the time.

The nurse came to the house and did a comprehensive medical questionnaire as well as gathering blood and urine, weighing us, etc. The questionnaire covered our physical and mental health and we provided every last piece of information, including all of the doctors’ contact information. For all the build up here, you won’t be surprised to learn Debra’s was approved several months ago and mine has needed extensive follow-up.

My PCP sent my records four times. The underwriters failed to for university hospital records. They sent me, by email, another extensive set of questions about my mental health, all of which I’d answered with the nurse. Frankly, I’d have been happy to do the whole thing via email but apparently that’s only not allowed the first time. Then they decided they’d need those records from the university. Now, six months later, they are complaining because the university is slow. I mean, yes, I’m sure their medical records department is slow. But I don’t have a lot of sympathy for the underwriters who lost records, didn’t read the ones they had, and delayed in making the records request.

It was so hard to go through with it the first time, to be confronted with my litany of medical failings. The brain surgery (not cancer), the suspicious breast lump (not cancer), the steel ankle rod (not cancer), the mental health suite of fun (not cancer though!), and the melanoma (actually cancer). I feel like I’m a wreck and every time I have to talk to the insurance company or the underwriters I get closer to breaking down in tears. I’m worried they’ll have to do the exam part again and I’m trying not to imagine what that will feel like. Honestly, if it were Debra, I’d be okay if she gave up at this point. But I don’t want to leave them without money to live on and the longer I wait, the more difficult this is going to get.

Being a grown-up is too hard some days.

Anxiety at the Doctor (episode 1 million)

I thought I was better. You guys, I called the dermatologist (myself!), I transferred my records to another highly recommended doc, I made a appointment with the gynecologist (myself!) and I transferred those records from the not-so-nice lady of before, I scheduled and went to a mammogram and I did all of these things without once crying. I consider this a major win.

I did. I do. But still.

The mammogram turned up questionable. Just a small lump, they said. Most likely a cyst.  But let’s have the ultrasound just in case. And so I scheduled that appointment (myself!*) and I went. I’ve been running on the solid side of sane for a long time now, grief over my father aside, and I was pretty sure I had this in the bag. After all, the gyno isn’t until NEXT week and I’m definitely medicating for that one, given my history of panicking.

Speaking of…

I was perky heading in. I had some trepidation about all the really angry ladies in the waiting room but I got called in and seen almost immediately. I knew what the gown would look like (it’s a very nice jackety thing) and I was taken straight to a room. But there was the table. And there was the crinkly paper. But I sat. And I made small talk. And I was so proud of myself.

Until.

The radiologist was a man. I don’t have any problems with this but perhaps my subconscious has other feelings. Even though he didn’t have the white coat on. I felt my heart speed up and I thought it would be okay. It was not. First of all, an ultrasound of your breast hurts. Also hurting, my palms, since the nails I should have trimmed were digging deep. Again though, I thought it would be okay. I breathed. I found a spot on the ceiling to focus. And then I started to shake. I trembled until the screen couldn’t capture a clear image anymore. And the world dimmed out on the edges. I don’t think I passed out. Noticeably.

But they did notice.

And they put the table up and were very kind and solicitous. And I had warned them after all, but no one really believes that it’s a thing and they figure She’s nervous. Her boob is hanging out. Of course she is. But inside my brain there is actually no thinking. There’s no worrying about my nakedness, no fear of the results, no apprehension. There is only a wall of static that either gets noisier or brighter or darker or quieter but there’s no telling which. And today? It was deafening.

But I noticed.

I was making them really nervous. In fact, when the doctor tried to shake my hand and I didn’t because my white knuckles had locked them into place, she paled. And when she delivered the diagnosis – just a cyst, all clear – she was kind, and concerned, and perhaps the most straightforward doctor I’ve ever met but still, she looked like she was quaking a bit herself. The radiologist had one hand on his phone. The tech had her eye on the box of Kleenex.

I didn’t know that my anxiety made it harder on them. I wish I could stop it. I do. And I would have warned them, except everything had been going so well. And now my lips are numb and the world is still a little hazy but I have to pick up my wife and she will want me to talk and all I can say is I swear it’s not my fault. Even though I feel like it is. And I’m so sorry.

Thank you for listening. I promise to pull it together shortly.

*I do not call doctors, that’s how bad the anxiety can be. But I did. Myself!

 

 

 

Ways Cancer Doesn’t Suck: Anxiety Edition

I know you’re utterly familiar with my mental state if not the list of medications that keep it happily in the zone of “mental state” and not just “mental”. Is that a 90’s reference? Needless to say, it’s a fine line we walk over here but we’re walking it.

Prior to cancer (not my own which seemed, somehow, less anxiety-causing although I suppose it wasn’t really, just more of an intense scream and less of a low, steady tearing out of my heart), I had a prescription for an anxiety medication that caused me to care less but to also have a splitting headache not too long after getting to the care-less point. And, since the fact of knowing I would GET a headache made me more anxious, the bottle still sits in the cupboard, mocking me with its potential but being, in my opinion, nigh untouchable.

But the anxiety, it didn’t go away. It didn’t dissipate or get less. In fact, I fell into a panic attack or two just when I thought I’d become the sort of person who could sagely look upon someone else’s panic attack with empathy and gratefulness without wondering how long until I was in that place, too. Twice (I’m a slow learner) I found myself noticing that I should really get up and leave the room/meeting/lecture/etc and try to breathe before I passed out, then attempting to do that very thing, and then finding that I actually could not physically get up or do anything actually except feel like the air was being sucked out of my lungs. They were a different sort of panic attacks. Before, something in particular would set them off for very sane (in a PTSD way) reasons. Now, they are here when they were not for no reason at all, but of course, for ALL the reasons, of which, let’s be honest, there are too many.

And so I asked my lovely physician for something else. I have an irrational fear of doctors thinking I am drug-seeking. I blame it on the emergency room visits when I was younger and blind from a migraine, doubled over and unable to speak clearly, and doctors and nurses treated me skeptically because you can’t verify migraine and so it’s one of the easier things to seek drugs for. But I asked, and I got the words out, which as a very real risk since the anxiety itself was about to send me right over the edge and now I have a different anxiety rescue and my god has it changed my life. I made it through father’s day yesterday without a hiccup and I can mostly catch it these days before I am too paralyzed to move. So it’s a silver lining I wish I didn’t have but I do, and that’s fine.

Speaking of anxiety, it is what has kept me from writing here and everywhere but perhaps if I promise more here soon, I’ll be able to jump this hurdle and come back to it.

“I don’t want to go to the doctor”

What is it that inspires fear of doctors? Why is there an actual thing called White-Coat Syndrome? Is it the vaccinations we have tucked in our memories somewhere? Even if that’s it, it seems that at my advanced age I should not react with heart-pounding anxiety when this happens:

Petite doctor enters the scene toting her doctor’s bag and brandishing a clipboard: “Mama, would you like some doctoring?”

Me, distracted, towel in hand: “No baby, I’m off to take a shower. Go doctor mama.”

Off she trots.

Post-shower, towel in hand, the door bursts open and a little voice pipes sternly through the steam: “Mama, after this, doctoring.”

Me, gripping the door for white-knocked support, heart leaping out of my chest: “Uh, okay?”

Come on man.

Needless to say, I don’t bring RR to the doctor with me. However, upon being informed that Dr. Lily was working on setting up an appointment with a specialist for her toe-walking, RR prompted planted her heels on the ground and has endeavored to keep them there ever since. She claims the nightly stretching we’ve been doing with her calves is helping and she’s not 100% consistent but I’d say that about half the time when I look over at her she is making a concentrated effort to use her entire foot.

All because we casually mentioned the doctor. Poor kid.

Grounding Our Fairy

RR has a lot of things going for her. She’s everyone’s friend, she charms adults, she got a fair shake in the genetic lottery, she’s strong and fast and coordinated, she reads and writes, she’s funny, really funny, she’s thoughtful and kind, she draws like an artist.

She still isn’t fully potty trained. She walks on her toes.

So far we’ve gotten by on the doctors’ assurances that:
1) There are no sensory issues.
2) Many kids struggle with toilet training through 5.
3) Her toe walking will abate.

Our wonderful doctor once wrote:
“Given how utterly fabulous, active, creative and intelligent RR is I do not believe that her tippytoeness is indicative of anything other than her wings not being fully developed yet. Fairy wings don’t typically develop fully until the age of 7, and she is just compensating because she is ready to fly NOW.  I would only pay attention if you see her leave the ground, and then only to make sure she doesn’t take flight before she’s mastered it fully and can do so safely.”

You guys. Do you not just love her?

But in a visit today we talked about the two issues combined and tried to zero in on what might be causing them and whether they are related. She thought that a visit to a developmental pediatrician might shed some light. Debra and I have been cautiously watching the (lack of) development in these areas and with a new camp and new school coming, I’d like to make sure we’re doing everything we can to ensure her body supports her development rather than hinders it. Still though. I hoped it wouldn’t come to this point.

It’s unlikely we’ll get in quickly so there’s no point in worrying now. I’m hopeful that they can help bring her back to earth and more hopeful that another doctor will have a breakthrough suggestion on eliminating accidents. And, of course, that nothing else needs attention.

Dad Continues On

Turns out, glioblastoma is an asshole no matter how you slice it. Even if you do slice it (out), it still will sit around waiting to kill you. But not right now, say the doctors. In a little while. Of course, a little while could be 15 months. It could be eight. Or four. If you believe the miracle articles or the people who know a person whose second cousin beat the odds, if could even be three years.

Or, you could be us. Both Debra and I have friends whose fathers died from this very thing. They did not beat any odds.

After his second opinion my dad seemed to feel lighter. Because 15 months IS better than four. His doctors are frank explorers willing to try anything they can, anything that has ever appeared to work, anything that won’t kill him before the cancer does. They respond to emails in a heartbeat. They talk to each other. They do everything your best version of a doctor is supposed to do.

He started radiation and chemotherapy two weeks ago with all of the confidence of a man who has never had a serious illness in his life. No side effects for six weeks, he heard. Which, I should think is obvious here, is not what I heard. Or, for that matter, the reality. The exhaustion. Side effects from the pills, from the beam. And some other fun creeping things (but not the cancer – they say it won’t creep during treatment). I can’t tell how he feels about it but I’m proud of him for meeting this and moving into it with whatever fear and anxiety and panic he has tucked into his pocket. That makes it sound like I want him to hide those things, but it’s his ability to hold them close without letting them hold him. That’s what I mean.

If I told you all my thoughts, there would be so much spilling on to the page. Ugly stuff. Selfish. Sad. Frustrated. A little angry. But I want to end on this note, the proud of my dad note, and save the rest for wallowing in later.

On the Bright Side, That’s Why They Call it an “Opinion”

On the bright side, there’s still a second opinion to be had.

Midway though another crying jag, Debra gently told me that I had to assume the best instead of saying that my dad was going to die (in four to nine months, if the first opinion is to be believed). She was incredibly kind and firm and in that moment I realized that I underestimated her. I thought she was the best person I could have married and I knew she was making me a better person, but it wasn’t until i heard what she was saying and how she was saying it that I realized she’s better than I knew. So on the bright side, I’m really lucky to have married up.

The thing is, I can’t do what she asks. My mother and sisters have moved to a mindset of utter denial. Oh, dad has 5 years at least! When dad is 80 we’ll all have a good laugh about this. Dad and I need to get an RV we can use to travel cross country. Mom. Dad can’t drive. Like, ever, said the doctor. On the bright side, she was just one doctor.

I can tell dad I’m looking forward to father’s day next year but that’s about all I’ve got. Science says that it will be amazing if he gets five years. Actual science. This thing, that people don’t actually survive, doesn’t have miracles. It doesn’t give me comfort to tell myself that the doctor is obviously wrong (sister 1) or that dad is strong enough to beat it (sister 2). He isn’t a healthy, young women. There’s no promise that he’ll be “an exceptional responder”. There is no evidence that this cancer will spare him when it takes everyone else. There is no bright side.

In front of my mother, in front of my father, I am determined. I can believe that he will fight (that he can fight, at least, though he may not choose to). I can believe that he will have the best medical care. I can believe that we will do everything possible to give him as many days as we can squeeze out of this cancer. I can believe that we will take care of my mother through this. I can believe that anything is possible even if I can’t assume it’s probable.

i’ve dug deep trying to reframe denial as hope but it’s not who I am. I am practical. I am driven. I am determined. I am losing my father. On the bright side, I haven’t lost him yet.

Five Dollar Complaint #3

You’ve had those days. The ones where you wake up with a lead weight in your stomach and a sharp sense of dread. I expected to see tomorrow morning come in lighter and more certain but it won’t now, because the appointments for my dad were moved to Thursday. Because the labs aren’t in, again. They expected them last Monday and thought Wednesday at the outside. And when they weren’t done on Wednesday, we were all a bit frustrated but were reassured. Of course they will be in before Tuesday, they said. And then they weren’t. Thursday, they tell us.

This brain cancer. It kills folks in weeks. We’re not talking about being annoyed because our Christmas plans might be spoiled, we’re worried about Father’s Day. Intellectually, I know that, if it really is just a month or two, delayed labs are not the problem. But in the interim, this period without prognosis or treatment, it’s exasperating.

I