Love Grannie and Pop Pop…

Yesterday I completely dissolved at story time. There we were, flipping back the cover of Library Lion, and reading the inscription.

Dear RR,
Merry Christmas 2014!
Love Pop Pop and Grannie

All the breath whished right out of my lungs. One minute I was breathing and the next I was buried in heavy sand struggling to get air. You know how when you cry with your eyes closed your eyelids fill right up until teaspoons of salt water rush down your face? Somewhere between sand and salt, I sent my daughter to the other room to “hug mama goodnight” or “to have a silent breakdown.”

What if that was the last Love Pop Pop and Grannie book? How can RR grow up without him? Of course she can, but it’s so sad that she won’t. I’m heartbroken for her. I’m heartbroken for myself. I’m heartbroken for my wife.

My father recently proclaimed to her, “You are my favorite son-in-law.” Of course she is, dad, she’s amazing. But oh my god, this is not fair.

Tomorrow I’ll join my mom and dad at the oncologist to get the diagnosis details. The prognosis. Maybe it will be nothing. A terrible mistake. Realistically, it will be just terrible.

How do you not cry? I’d like to save the crying for later and hold it together in the moment. So pass on your words of wisdom. How do you keep from crying?

Summer Time Blues

I was going to tell you all about how awesome RR was and then I realized you already knew that and so I decided to tell you how awesome I’m not instead. Well, it’s not that I’m not. But I don’t feel awesome. Right now I feel overwhelmed and trapped and disappointed. So, yeah, I’m a lot of fun.

Today we took RR to the doc for shots and we came away with, yes, shots, but also increases in all of our respective medications. Sadly, there’s not much to say about it except that mental health is a fragile thing and I thought I had mine squared away but it never really is. It’s frustrating to feel like I can never quite grip the slippery synapses and twist them together so that they’ll stick. And with me it’s not a big splash of crazy (anymore) it’s a slow skid around the bend. So when the doctor asked if I had been sleeping and, well, I hadn’t, not well, and then wondered if I might be on edge at work and I remembered a recent and uncharacteristic (anymore) outburst, I felt the world sort of fold in around me for a minute. Like, didn’t I fix this already? Why can’t I just be like everyone else? 

There wasn’t time or reason to wallow. It’s just me. This is what I get. And so, just a few more chemicals to balance things out because everything else has been a little bit of a false promise. Exercise, mindfulness, no sugar, etc, etc, ad infinitum – it works until it doesn’t. The drugs do. I admit though, I’m always expecting them to stop working. Not expecting. Fearing. 

But that day isn’t today. So onward. Let me tell you how brave and wonderful my daughter is: We took RR for shots and she didn’t even cry. She announced she would be brave and she was. The best thing about 4 and 3/4 has been brave. Also, we’re spending the next week and a half together (equal parts wonderful and terrifying) AND she has only had ONE accident in the last 6 days.

Brave. And completely awesome.

Terrible…Fours?

In the middle of a tantrum (and believe me, it nearly was mine), I realized that RR is having some throwback terrible twos. I guess they are anyway. RR has always been something else, but two years ago, on the cusp of three, she was like this: full of cute babyisms and charm. But. BUT. She wasn’t potty training then.

You heard me. Potty training is going to kill me. The accidents. The whining. The shouting and stamping and growling. What?! you are surely gasping, STILL?! Yes, still. This is a child who spent so much time reading and adding and outsmarting us that she is just now getting around to the practical business of using. the. bathroom.

For what it’s worth, she mostly does (use the bathroom) and by mostly I mean about 50% of the time we pick her up and she’s “a little wet, mama, just a little” which can very between damp and GALLONS. She’s old enough to be completely through with us reminding her to hit the bathroom but she’s still that kid who gets so deeply into whatever she’s doing that she forgets she and her body are in this together.

Cue the tantrums.

I’m pretty sure this is what the terrible twos are made of. All of the frustration she feels piling up on her little soul. It’s worse on days she has an accident. It’s much worse on days when she’s so wet a teacher has noticed and sent her to change. While I think that she is surrounded by patience and practicality, all the empowerment in the world doesn’t change the fact that it must be beyond awful to be nearly five and trying to master this. And so she loses her mind.

We’re back to the urologist again next week. I don’t expect he can fix tantrums though, so I’ll just keep mine to myself

It HAPPENED.

You guys.

YOU GUYS.

Holy fucking shit.

My child hasn’t had an accident in almost two weeks. You guys. I can’t even.

This is my new favorite. I work with a lot of college students.

Let me tell you, this is one of those times. Those times that you think, we are so. lucky. So incredibly lucky to have modern medicine. To not only have modern medicine but to have upbringings that have allowed my wife and I to not take no for an answer. To stand up to a doctor and say no. This is not working. Try something else.

I don’t take that lightly. My wife’s mother did something really excellent when she raised her. She helped build a strong person that isn’t afraid of authority and doctors’ cool competence, a person that can listen and then make a reasoned argument, a person that is able to push back firmly and politely and gets shit done.

I’m all over the place here. It’s shock.

The more we thought about our visit with the occupational therapist, the more convinced we became that this wasn’t the angle. At least, not at the outset. We did make RR a schedule with pictures and we considered the ultra expensive body harmonizing music and equipment she recommended. But our guts said this didn’t seem sensory. In fact, the OT said, “well, she could be mildly sensory-seeking but probably we aren’t seeing many signs because she’s so smart” Dude. No one has ever NOT said that. She’s smart. If this is flattery, we’re not having it. If it’s not, it’s still not helping.

A few days after that we were able to get in for an ultrasound of her essentials and a visit with a resident. As I sat in the sparkling new children’s hospital and watched her play, I felt that old tugging, the one that must run in my family blood (or at least that my mother ground in), the one I thought I’d therapied out, that we didn’t need to be there. There is nothing really wrong with her. Other kids need this time more. And then she peed her pants, oblivious.

The urology folks pumped her full of juice and she was not, I don’t think, scarred by the ultrasound. Everything was so perfectly normal, right down to the type and quality of flow she has. I had such a sinking feeling, sitting there, knowing that I was wishing there was something mildly, fixably wrong, and feeling absolutely horrible about it. For RR’s part, she held it together through the full two hours and Debra handled the end of the appointment when I had to run (unrelated to feeling absolutely horrible).

They tried to counsel good nutrition. I’m glad I wasn’t there. Yet another lecture from a doctor based strictly on what they think they should say and not at all based on fact would have put me in tears. She eats more vegetables than most people I know. She drinks water. It’s like prison over here. Fortunately for all of us, my wife chimed in with a thank you but also really, we have tried everything (though she said this in a much more articulate way). EVERYTHING. Is there nothing else?

And it turns out, there is. I’m sure there were lots of reasons why it took so long to get here. To a medication for incontinence. To bank on the chance that some spasms were making it so that she couldn’t hold it and hadn’t ever learned what it felt like to hold it. Couldn’t hear her own body telling her what needed to happen when. Not because she wasn’t listening or didn’t care or wasn’t smart enough or didn’t like the way it felt or liked it too much. No. There is actually a solution.

I’ll admit, after getting a last-ditch prescription, we were a little reluctant to take the plunge on a medicine not typically given to kids. We went into the weekend waiting for a call back from our super-but-where-the-hell-was-she doctor. And so we did it. We gave it to her. And one day bled into the other and then there I was, a week and a half later, realizing that I have a potty-trained child. No accidents during the day. She interrupts her work to go. She poops. She pees. She doesn’t leak.

I cannot tell you how amazing this is. She still wears a pull-up at night and you know what, she can do that until she’s 40 if she wants to. Accidents in the daytime were holding her back in so many ways. I’ve seen tears in her teachers eyes over this. This is a miracle.

Panic, Brought to You by the Cancer Center

There I was, back at the fucking cancer center.

I approach this annual appointment with trepidation but this year I was mentally armed. I took the whole day off. I scheduled a morning spot, in hopes I wouldn’t have to wait as long. I knew to expect the x-rays and blood work and humiliating nipple stickers. I mentally committed to wearing the ridiculous gown so that they could check all my lymph nodes if they wanted to. I was prepared to inform the cranky intake men in advance that yes, my blood pressure would be high, so that they wouldn’t lecture or threaten. It’s always high, I say, I am anxious when at the doctor. This is an understatement but, unlike my high blood pressure at a routine well visit, none of their business.

It began well enough, considering. Considering the registration desk balked at adding my wife. It only says husband, she said, I can’t use that field. It’s the law, I said pleasantly. I’m sure you can just use that field. We had a tense moment, she and I, but she recovered enough at the end to say congratulations, which I took as a positive sign for the rest of the visit.

In fact, there was no blood work or stickered x-rays. The waiting room was packed but my name was called fairly quickly. The intake person was someone my age who was understanding and reasonable about my blood pressure and didn’t tut at me when I clenched my teeth at the pain of the cuff. She weighed me without comment (I, of course, filled in the lecture about having gained weight since the last visit. I’m beating myself up enough, thank you, I don’t need more help. She deposited me in a room and said I didn’t even need the gown. You guys, it was like I was going to make it through the day without crying. I didn’t even see the colossal anxiety attack coming.

We took a slight trip downhill when the next nurse came in and produced a gown but she did turn up the heat and gave me a second gown and warm blanket. I don’t think I’m so large that a regular gown shouldn’t fit but it was far from being able to close. I pulled out a book to read and distract myself, since the naked wait is usually no less than 45 minutes later. I was pleasantly surprised to the see a resident in under a half hour. And she and I managed all the questions and prodding with only a few measured, deep breaths on my part.

You know though, she and I had the same name. Not only the same, not-so-common name, but the same unusual spelling. Could she have started the visit by commenting? Building some rapport? Would that have halted what was about to come? Could she have become my ally when the whole world got dark on the edges. I think, yes.

And then she left. I waited. Another hour. And, being scantily clad, I opted not to step into the hall wondering about my situation. I had seen the full waiting room. They were surely aware they had an occupied room. And when the NEXT nurse came in, brisk and perky, she acknowledged the wait without apology. They did know. I wondered if this was normal enough for them not to notice. In all though, this wasn’t a big deal. I expected a wait. I came prepared. I was using my keep calm skills. I was mostly okay.

Until I totally wasn’t. It started right around the time of the freezing stethoscope and you should start eating leafy greens out of the blue. Where did the oxygen go? It and my self-control spirited out of the room, and when I opened my mouth to respond, that I do, in fact, eat lots of leafy greens, I simultaneously realized she was lecturing me about the relation of my weight to cancer and making all manner of assumptions about my knowledge of health and my eating habits. I didn’t pass out, but I couldn’t answer when she asked me for the fifth time what my very-obviously-a-crocodile tattoo was and meant. I couldn’t answer because I could not breathe. I leaned over not to pass out, aware that she was asking again. And trying to focus on the other Meridith, the one sitting passively, the one who could have built some rapport, who might have saved me, just by using my name.

And actually, I was still somehow not past the edge. I managed to make a new appointment for next year. I managed to get to the parking lot. I managed to put the car in reverse (though not without fumbling into the wipers, the horn, and the hazard lights) and, as I was about to back up, a probably well-meaning worker began to scold about my space. I shouldn’t park here, he said. It wasn’t marked as maintenance, but apparently it was, and he was undeterred when I pointed out that I was actively crying and I’d like to go. I’m just trying to help you out, he said. For next time, he said.

My father once took my keys when I was too emotional to drive, saying that it was just as bad as driving drunk. So I was tried to hold it together for everyone else that had to drive next to me for the five minutes it would take to get to my wife, who makes everything better. But the worker wouldn’t move from behind the car and I was near to sobbing. I pled with him to please move, couldn’t he see he was making it worse? He was disinclined to hurry.

Some years later, he moved and I made it to Debra, completely in humiliating pieces, and she took me home. I’m trying to decide what the impact will be if I refuse to go back and then get cancer again and HAVE to go back having not been. How much worse will it be then? Weighing mental health and preventative health, how much difference is it making to visit the cancer center AND a dermatologist AND a general practitioner on the regular? As we have now moved to what counts as an glorified skin check, how much preventing is this step doing?

My brain was fuzzy for days after the visit, as if my memory and response time had short circuited. That can’t be healthy. I’m typically medically attentive but this time, I might have had it. I have year before the next appointment. Plenty of time to decide.

Soiled

Every so often, I catch myself mourning my cute, round, baby with her giant eyes and solemn outlook. Most of the time, I love her spring-loaded self. One solid strand of muscle devoting equal intensity to chasing, jumping, climbing, coloring, sleeping, and eating. Her flexibility always surprises me (mama, why aren’t there mushrooms on my pizza? a) mushrooms? b) totally mellow when I shrugged). While there are fits pre-loaded for appropriate times, they are nearly predictable and nearly always involve the potty.

You guys. She is now four and some. She is STILL not potty trained. What was mildly concerning and mostly frustrating is now baffling. Why doesn’t she get it? At least the deposits (of both kinds) occasionally make it into the toilet, but a good day is often followed by four accidents in 3 hours or some other feat of bladder/bowel olympics.

As you would, we’ve checked any constipation and tried every training technique in the books. All the books. As we rounded the corner on four we were in constant communication with the doctor. We’ve all been on the same page (all of us but RR). The hold-up doesn’t seem to be medical although we’ve made an appointment with pediatric urology. We were both reticent to go that route, having had our own fights with our bodies early on and the mental scars to match it. There’s plenty of time though, the earliest appointment we could get was for March.

March.

One of her teachers has been concerned about a sensory hiccup and recommended an occupational therapist. We again held off (until now) since by all reports she has zero other indications of another sensory issue. At all. Anything. Except this. We’re off to see that person on today. I am hopeful that she will have a suggestion transcending a sticker chart (her initial reaction) which, you should see RR approach a sticker chart, the disdain. The utter indifference.

RR cannot be swayed.

Some days we go through six changes of clothes. Other days just one or two or none. Of late, now and then, we lose our ability to be balanced and both of us at separate times have been frustrated with her. She and I had a lengthy talk while she angrily sat on the toilet, her insisting that she didn’t have to go and me insisting that she try, given the damp state of the panties I had just stripped off (yes she normally does it, yes I’m usually more sane). I gave in and told her all of the things I would normally not say. That she is smarter than this. That at that moment her brain knew better than her body. That she needed her smart brain to tell her body that it has to try harder. And I walked out and shut the door.

As I criticized myself up and down for that reaction, no matter how measured my tone, I heard her tiny voice piping through the door, talking to her body. explaining. She was earnest and lengthy. She peed. A lot. This is one of the hardest things I’ve ever done. I can only imagine how she feels.

As much as I would like to say that discussion (hers and mine) closed the door on this business, yesterday happened as normal. Damply. This is an endless stress in our home between my wife and I and us and our daughter. There are plenty of good things. But this thing. It’s maddening, saddening, frustrating, baffling. I hope one of these appointments helps, because time and neutrality (and stickers and rewards and pre-rewards and encouragement and self-care and indifference and so on and so on) hasn’t been.

Doctoring

I thought I had surely mentioned to you that a visit to the doctor, for me, is torture (and not the good kind). In fact, I have a whole tag devoted to it. I can trace this back to childhood pediatrician Dr. Downey although we can scatter blame around liberally if you want. There’s plenty.

You can imagine my delight (which, in this case, is equal parts relief and terror that she might retire despite being my age) in finding a doctor who not only sees the whole family, but is nice, approachable, doesn’t wear doctory clothes, and often gets us in on the day we call. She manages the family’s health without being condescending or judgmental, things you would hope are a given in one’s doctor but, in my experience, are not. We treasure her. And she took our insurance.

Took.

Used to.

Past tense.

A month ago we got a pleasant but frank letter about a change in her solo practice. She is moving to a new model of care that more closely mirrors the golden age of house-calls except she can’t be paid in chickens or fresh bread. Nope. She can’t be paid in anything except actual money that is not, to be clear, the money already deducted for our health insurance. In exchange for old-timey, part-of-the-family, care, each person pays a monthly fee instead of a copay.

There were tears, my friends.

Without some serious tightening elsewhere, we can’t afford to pay monthly above and beyond our insurance. Legislation is pending to allow payments like these via a flexible spending plan but pending is not actual. My bank account doesn’t actually get the ideas of pending, patience, or eventually. My credit card does but he’s a wily bastard and not to be trusted.

And so here we are. We’ve a month left to decide whether we’re staying or going and while all signs point to staying, we haven’t yet figured out how to manage the costs. I think I’m a bit paralyzed about it all, especially about the idea of finding a new doctor and starting over. My medical history is a smorgasbord of awesome (if you consider awesome to be both baffling and predictably catastrophic).

This is the second doctor I’ve had stop taking insurance. Are lots of other doctors doing this? Is this some sort of medical industry trend? Is Aetna (our only choice) so horribly awful (we don’t think so) that providers run for the hills? And the million dollar question, how worth it is it to pay, essentially, twice for a really great doctor?

The decision is mostly made but, jesus, I wish it weren’t so complicated.

 

 

We ALL Use The Potty, Do You Hear Me?

Well, not ALL of us. RR, I’m looking at you.

Today is the first day of RR’s winter break. She will be home for two weeks with someone, although it’s a bit spotty whether that person will be me, her mother, her grandparents, or some combination of the group. It’ll be all of us and the potty.

As you know, our attempt to go cold turkey back in August was unsuccessful and we retreated into diapers, teaching her to change them herself and clean up on the toilet. She does this at school reliably and less so at home but that’s because we decided to use our parental currency on other things this fall.

Five months later and a solid two weeks in hand, we’re going to make another go of it. As you know we’ve tried nearly everything (I have, so far, drawn the line at pumping her full of liquids on purpose) and she still has yet to deposit a drop. We’re armed with ideas from our doctor (who, by the way, agrees nothing physiological is stopping her) and from a child behavior specialist. She may well be getting a doll that pees for Christmas after all.

Wish us luck this time. I don’t have high expectations but I am hopeful.

A Mixed Bag

Yesterday’s mammogram was not as painful or as humiliating as expected. There was no pulling or tugging (maybe I have good breasts for this activity) and much less squeezing than I expected. I wonder if it’s a technology change, a place difference, a perspective, or my own disinclination to look, but I wouldn’t describe it as flattening like a pancake. Thank goodness for that. It was also much shorter than I expected – less than ten minutes. Also surprising: to be given a cape instead of a gown.

This lady’s cape offers far more coverage than my own. I might as well have been wearing a scarf for all the length it offered, barely covering half my back and arms. Which makes me wonder why, exactly, we bother wearing them in the first place. In all, I was glad it wasn’t as dreadful as I expected. In fact, my reaction was much like my daughter’s any time she encounters a new turn of events: “Oh. Well then.”

The mammogram clinic is in the same building, on the same floor, and one door down from the fertility clinic. I hadn’t really thought about that until we pulled into the parking lot and I got the butterflies I always do: happiness, excitement, what if it’s this time, can’t wait until it’s my turn to come back for the first ultrasound…oh.

Cue carefully bottled up sobs. In fact, I think I’m still sobbing somewhere deep inside. It isn’t fair. I know that my wife will want to comfort me (again) and as much as I love her, I’d rather she not. This is my own grief. She has her own somewhere but it isn’t something we share in the same way. I wonder how many mammograms it will take to shrug off the hope of the fertility clinic. It wasn’t one.

It’s hard, but as I dropped my daughter off at school today I was reminded of all the things we can do and she can be without a sibling. The school we can afford. The soft singing I can hear from the backseat. The time I can take to sit at a small table while she ever so carefully drops a single drop of water into a pea-sized cup. All worth the tears. More than worth it.

Tired of Taking My Clothes Off

You all, I mentioned that I was tired of taking my clothes off. I am tired of someone looking at my skin with a magnifying glass and lifting my shirt to listen to my lungs. I’m exhausted by remembering to wear a short-sleeved shirt for flu shots and blood pressure cuffs. I do not want to put on another gown that opens in the back…or, for that matter, the front. I am tired of feeling lucky that I have access to such good doctors who love to see me naked. I’m tired of taking my clothes off.

Yesterday, my somewhat chilly but she caught the melanoma so I can put up with it dermatologist looked me up and down for more suspicious areas. I felt very rogue delaying this appointment from September to December but no one wants to see that many bug bites with a magnifying glass. Fortunately, my living on the edge didn’t result in any cancer getting a leg up and I’m free from her ministrations for a year. I’m not the moley sort so there’s not much to look at. Even so, I’m tired of taking my clothes off.

Tomorrow I’ll be having my breasts smashed flat as part of the welcome package for turning 40. My gynecologist is on it. She scheduled the appointment before I ever got to her office for my annual. I would probably be more okay with this if I hadn’t been taking my clothes off so frequently, or if I hadn’t been xrayed with my fantastic nipple shields this summer, or if it didn’t involve turning my breasts into pancakes. Take ibuprofen, she suggested. I refrained from suggesting she bite me. Instead I said, I am tired of taking my clothes off.

It’s just the shirt, Debra said. Just the shirt.

I’m aware that the alternative to taking my clothes off is certain death. Probably instantaneous. And I’m aware that I probably have more medical problems than most. Maybe this will mean I live longer. But maybe it won’t. I am so tired of taking my clothes off.