teendoc's Open Salon Blog

Lucky Duck

Wed, 6 Jul 2011 00:07:17 -0400

Sometimes the people you think you know end up surprising you…and not always in a good way. Even with long-time friendships, there can be facets people reveal that can both stun and sadden you.

To be clear, I understand completely that one needs to accept his/her friends as they are, good, bad or in between. Yet it can still be jarring to suddenly learn about attitudes that you didn't know existed. Attitudes that, despite all attempts at neutrality, leave a bitter taste in your mouth.

I've been friends for years with a married couple. They've been wonderful and supportive friends despite our ideological awk, Fox News! differences. They also happen to be a couple affected by infertility and as I went through the latter part of my infertility journey, they were both, individually and together, people with whom I could share my fears and pain.

Their infertility journey has lasted the 10 years of their marriage. Though some ART was tried, there was a discomfort with the process. There was talk of moving to adoption, but the husband has had cold feet. Seriously cold feet.

His is a "you never know what you're gonna get" fear about adoption that he readily admits is irrational. If I've talked to him about it once, I've talked a thousand times. He knows it's nutty, but just can't seem to get over himself. His wife, however, wanted to move forward with adoption. His reluctance proved to be a stopper. So they've achieved a type of détente, living child-free, traveling many times a year, and enjoying life.

Of course that didn't stop me from feeling empathy with his wife. But for his admittedly irrational fear, she could be enjoying the parenthood she wanted. It isn't my place to meddle in someone's marriage, but I did always feel bad that this issue seemed to be one he couldn't move through, even for her. And that man loves her so much, he'd drink her dirty bathwater. I've seen that love that borders on adoration in his eyes. It is beautiful.

Recently we had a business dinner that allowed me to catch up with the wife for the first time a long time. She asked about my kidlet and I lamented described my recent challenges with my spitfire of a daughter.

Somehow I segued to the controversy I had inadvertently started on Facebook when I asked for advice/strategies for continuing to teach my then 3 3/4-year-old Zara to read. She shook her head with disbelief when I told her that some "friends" felt that it was traumatizing to a child to encourage early reading.

As I finished recounting the whole saga, she turned to me and said, "Zara is so smart!"

"Yep, she is," I agreed, thinking of how her intellect is both blessing and curse for us as her parents. That child is smart enough to employ manipulation tactics that would make a teenager proud.

"You are so lucky," she stated.

"Lucky and challenged," I agreed, reaching for my martini.

"What would you have done if she wasn't smart?" she asked lightly.

Thinking that she was joking, I quipped, "encourage her artistic side and keep her off the pole." (I wasn't sure she'd get the Chris Rock reference but I thought it was worth a shot...)

"But see, you guys are so lucky. You and AdoringHusband are both very smart. What would you have done if you had adopted a kid who turned out not to be smart?"

I realized then that she was absolutely serious. What kind of question is this? Have I traveled so far into Parentland that this reasonable question from a non-parent is raising my parent-hackles? Or is it that this is one of those incipient train wreck questions that shouldn't have been asked in the first place? Like when people upon learning that my child joined our family through adoption would ask, "how much did she cost?" But this was no ridiculous stranger or near-stranger. This was someone who had been around since the loss of my pregnancy, the grieving, the steps toward adoption, and the glory that is my kid. Why is she asking me such a question? I thought to myself.

I opted to play it straight (naturally) and give the honest answer. "If our child didn't have intellectual strengths, we would encourage the talents and gifts that she did have. That's what any parent would do."

"But it would have been so bad if you two smart people didn't have a smart child," she said sadly.

By now the hairs on my neck were rising to attention, though the vodka did impair the erector pili musculature a bit. She sounded as if the greatest tragedy in the world would be for smart parents to not have smart offspring. Give me a freaking break! Then I got a hold of myself again. She is entitled to her feelings and thoughts. I don't have to agree with her, but I need to respect her right to feel as she does.

"But even if she were our biological child, there is no guarantee that she would have been an intellectual like we are. There is no genetic guarantee that the offspring will possess the features, temperament, or intellect of the parents."

"But at least if she were your biological child, you know that the fault of her not being smart was with your genes and not somebody else's genes."

What fucking difference would it make? I exploded inside my head. Would it be easier to assuage myself that Johnny didn't get into Yale because of my genetic screwup versus the intellectual deficits of his biological parents?! What the hell are we talking about here? Genes, traits, biology...shit! Is Eugenics next? I was not liking where this was heading.

"The fact of the matter is," I began carefully, "your child is your child, period, be they biological or adopted. Full stop. End of story. Your role as a parent is to love, nurture and support them as they grow into adulthood. Whatever features, talents, or traits they possess, your job as their parents is to help them successfully play to their strengths and bolster their weaknesses. Fault doesn't even enter into my consciousness because it doesn't freaking matter. She is my daughter. Even if she had the IQ of a pet rock, she would be my daughter and I would love her unconditionally no differently than I do now."

I felt my voice rising a bit, so I paused for another sip of what was an excellent martini.

"I hear what you're saying," she began, "but with adoption you just never know. It's kinda scary."

"Girlfriend, you might want to think about that a little more. Parenting is scary whether the kid shot out from between your legs or was brought to you by Martians. Parenting is one of the most scary things a person can ever do. Sure if you had birthed the kid and s/he turned out 'wrong,'" I said making air quotes with my fingers, "you could just blame it on some recessive genes or whatever floats your boat if that makes you feel less responsible somehow. But real parents don't look for fault or external places to lay blame. Real parents focus on the kid and doing everything humanly and inhumanly possible to raise that munchkin into a happy, self-sufficient, productive adult because that is the real endgame.

"If you think adoption is scary, don't adopt. Just don't. But I can tell you quite clearly that it isn't adoption that's scary. It's being a parent responsible for raising a child to the best of his/her abilities and aptitudes. That is really fucking scary."

By now, I realized that having crossed well into the land of profanity I had a good pissedoffishness going on. I took a moment and opted to check my cell phone rather than continue my little rant. Her husband had started talking to her on her other side, about the wine, the food, or something else less emotionally charged.

I smiled as I saw the beauteous face of my daughter on my cell phone screen, knowing that by the time I got home, she will have pushed all of AdoringHusband's buttons and then some, as is her wont.

I looked over at my friends chatting mildly with each other and the pissivity drained right out of me. Instead, I suddenly felt sad...very, very sad. I felt so sad that two good people could have such limitations on who they could love. Though their love for each other is unwavering.

Yeah, I am lucky, I thought, sneaking a peak at my kidlet again on the iPhone screen. My heart is open for love in its many forms, and I am so much the better for it.

Supergirls Need Moms Too

Mon, 9 May 2011 23:05:00 -0400

I'm the mom of a supergirl. Actually let me correct that. I'm the mom of a SuperGirl named, appropriately, SuperZara!

SuperZara is an invincible superhero with a plethora of superpowers. If her SuperZara senses tingle, it tells her that something is awry in her protectorate land, and she is off in a flash to right any wrongs.

She knows no fear, this SuperZara. She will fly into any perilous situation with little concern for her person. Oh no, SuperZara is about truth, justice, and the Zara way.

Danger can be lurking around any corner. SuperZara must be prepared to dash off in the blink of an eye to defeat the enemy and save the day.

There might be the need for some hand-to-hand combat. You just never know.

But she's always prepared (and fashionable to boot!)

She easily leaps tall curbs in a single bound, careful not to crush innocent worms and ants with her super strength.

She balances precariously along high ledges as she searches for hapless victims who need rescuing by SuperZara. Fear? She eats fear for lunch with a glass of cold milk. Nothing can stop SuperZara!

Well, except for a mask snafu. Curses you poorly fitted mask! You will not defeat SuperZara so easily!

I'm the mom of the inimitable, stupendous, fearsome, and formidable SuperZara, my newly 4-year-old daily miracle. How much do I love you, bleed for you, worry incessantly about you, and know that I would die without you? Words cannot begin to describe.

You thrill me. You frustrate me. You move me.

I must protect you (yes, even SuperZara needs Mommy's protection), guide you, and nurture all the goodness that suffuses your heart and being.

I know that you long to fly free, my SuperZara, but not quite yet. There are still moments when my arms and kisses will chase away the bad dreams of monsters in the dark.

But when that day comes, know that you will fly away taking my heart and my love with you...forever.

Thank you for showing me the wondrous state that is motherhood.

PS: I've been pretty well ensconced in mommy-mode for these last two blog posts. But to see some fun studio photography, visit Eclectic Journey Photography.

My Bucket Is Empty

Sat, 16 Apr 2011 14:04:23 -0400

The things kids say. We parents tend to talk about this a lot. Mispronounced words, crazy statements, things that just make you want to wet your pants in uncontrolled laughter when you hear them. You know the drill. Zara has had some fairly humorous examples in the past that I've shared before.

Yet there are times when words spill out of their mouths that just stun you. They'll say something that just shows you how much their brains have grown, how much they have learned, what quantum leaps they've made in logic that somehow you missed. Tuesday night was one of those nights.

She had been put to bed that evening as per the usual routine. But as she sometimes does, she woke up around 1 AM whining for her daddy to give her a drink of water/come stay with her or other distraction to keep her from having to go back to sleep. From what I heard he had obliged her with both water and company for a good while until she had fallen back asleep. Now it was a little after 2 AM and she was back begging for Daddy to come stay with her again. So by now, her second waking, AdoringHusband was at the go back to bed Zara response stage. This was met with more whining and crying, and that finally roused me from my Lunesta-induced slumber.

Waking up, I heard more plaintive wails of "Daddy, I need a hug! I need a hug!" from her room. AdoringHusband was repeating the "go to sleep, Zara" admonishment by way of response. But she wailed on.

Eventually I just had to get up and deal with the standoff. I was not pleased because with my insomnia once I wake up, I'm up.

"Zara," I said more sharply than I planned to upon entering her room, "exactly what is the matter?!"

"Mommy I need a hug," she wailed again, extending the word hug for a full 5 seconds.

"Why do you suddenly need a hug at 2 in the morning?"

"Because my bucket is empty," she responded sadly.

"Your bucket is empty?" I repeated in surprise.

"Yes, if you're bucket is empty," she explained patiently, "you need hugs from friends to help fill it up again and make you feel better."

I truly hope that she couldn't see my gobsmacked expression in the dim light of the room. I thought, how did she come up with that analogy? Was this something she learned in school? How did she manage to relate her feelings of sadness, loneliness or longing with her bucket being empty?

It was one of those moments where I wondered who is this little girl? Two seconds ago she was a curlyheaded infant crying when her diaper was wet. Now this profound child in front of me was explaining that a good hug would fill her bucket and make her feel better. That's an incredible leap!

Though I had felt so frustrated and tired upon entering her room, now the moment had turned into one of those times of hyperawareness. Time seems to stand still and there is nothing else in the universe but you and the person in front of you. I was acutely aware of the curve of her forehead, her inquisitive brown eyes, and her Cupid's bow mouth whose ends were curving downward in sadness. A corona of hair frizz framed her face. And I thought again, who is this deep little girl?

I scooped both her and the ever present Rae-Rae into my arms, burying my face into her hair and inhaling. I've always loved the smell of her. I felt her body relax into the curves of my arms and I knew somehow that she felt better.

"Sweetie, why is your bucket empty?" I asked softly in her ear.

"Because Grandma Ericka died," she said sadly.

That evening we had watched our wedding video and she got to see some images of her grandmother, my mother, who had died before she was born. She had asked me whether I missed her and I told her that I did every day. But I knew she was watching over us always to keep us safe.

"Honey, Grandma Ericka died a very long time ago. I'm sorry you didn't get a chance to meet her but she is in heaven watching us and loving us even if we can't see her." Zara snuggled in a little closer to me.

"I didn't get to see her," she said sleepily.

"It's OK. She still loves you and protects you from heaven. One day we will all be together again. But right now someone needs to go back to sleep. And I don't mean Rae-Rae."

After a little bit she started to relax more as she drifted into sleep. I slid her back onto her pillow and tucked her in with more kisses. Quietly I made it back to our room.

Of course by then I was unable to sleep. But I kept going over that amazing statement in my head again and again. My bucket is empty. I'm still shaken by its depth.

I honestly don't know if her seeing my mother on the screen was the true reason her bucket was empty that night. I'm not so sure as we've dealt with Grandma Ericka many times before. There may have been something else that she was unable to fully verbalize. But I'm still stunned at how self-aware she is for someone not quite four years old.

Since then, every evening I ask her about her bucket. If she says it's empty, I make sure I slow down and give her what she needs so that it stays full as long as possible. She deserves nothing less.

Lung Disease & Shifting Perspectives-Part II

Sat, 9 Apr 2011 18:04:20 -0400

The Crap

I seem to have a very ridiculous default position. No matter how far I've come, or how many years I've had in therapy, when the world starts falling down around me, my default belief is that I am deserving of punishment. Whatever is happening: health problems, marital difficulty, or zombie uprising, the belief I have to fight away from is that this negative is exactly what I deserve. I'm not allowed or entitled to expect goodness in my life. And if goodness does happen, it's only because God was looking the other way at the time.

Even though I was in the depths of despair, there was a part of me that was pretty damned pissed that after five zillion years of therapy I still found myself going to this position when I shouldn’t. I know in my brain how irrational this belief system is, but my heart can't seem to get on board.

I still had enough sense left to call my shrink. The fabulous thing about my shrink, Jeannette, is that she gets me completely and intuitively gets what it is I need from her. She knows just how uncomfortable nurturing and support makes me, but she's able to do it in such a way that I receive the benefit without going into overload and shutting down.

Jeannette called me that Saturday night around 8:30. Despite all efforts to stay clinical, I found myself blubbering through the whole medical update with her. By the time I was done I had segued into the whole God hates me bit that had become my theme song by then. "I was fine and healthy! I didn't smoke ever! And now I'm going to die alone air hungry on a ventilator!"

"Wait, wait, wait a minute," she said calmly, "let's slow down here. We seem to be going to the endgame before we even have enough information to understand the rules."

"I know I know! Everyone keeps telling me to just wait and see what the new pathologist says, but I know it's going to be bad. I just know it because I was too happy and God hates me." I kept sobbing into the phone.

"Liana you are just so scared right now. That's normal and that's human. You've never liked to see yourself as being human. You hold yourself to a standard that most human beings can't reach. You're scared. You're angry. You're despairing. I don't really need to say it but with you I do, all these feelings are normal. It doesn't make you any less than to be feeling this way.

"And the thoughts that God hates you... you know that old tape from way, way back. This is the same tape that says you don't deserve to be happy, that you don't deserve anything, and everything is your fault. And that's never been a message from God. That was the message you received from your parents. God is about love. There is nothing you could have done in your life that could take away God's love for you."

"I don't know..." I snuffled. And I sat there for a few seconds really trying to use my logical brain to come up with what I could've done so monstrous, so horrible that God would hate me. Getting IPF would be a totally fucked up piece of fate/luck/life, but it's not punishment. Then I remembered the last time I felt this scared and was certain that God was punishing me.

The Retrospectiscope

It was way back in the day, almost 15 years ago, when I finally had to break down and get the HIV test that I had dreaded during most of my sexual life. I was in med school when the AIDS epidemic hit. It was a crazy, crazy time. I was trying on some sexually adventurous personas (cough, cough, slut phase) and there was still an underlying mythos that as long as you avoided the high-risk groups, you'd be fine. For the most part I was okay but then after a bad breakup I decided to clean out the pipes with one of the sluttiest, slutty men I've ever known. A man so odious that he later said that if he ever got HIV, he'd sleep with as many women as possible to infect them as well. Clearly this was not a point of good decision-making in my life.

As my "punishment" for that decision, I got diagnosed with an STI. I was so devastated and ashamed. I felt that no one would ever want me again because I was now “dirty." I thought about getting HIV-tested then for completeness, not truly because I thought this guy was HIV-infected, but I was terrified at the thought of a positive test. I ended up developing what they called FRAIDS at the time: people afraid of being HIV infected, but too scared to be tested. I even went to the head of Infectious Diseases at the medical school and told him everything. He thought that I was being a bit ridiculous but was unable to convince me to get tested to put myself at rest. Instead I just played as safe as possible, was up front with partners, and put off testing until finally it was time to do it.

My shrink at the time didn't like the power that this potential result had over me and she marched me down to the testing center, herself, and waited while I had my blood drawn. Remember those were the days when it took about two weeks before you got your test results.

That interval, that wait was a time of total hysteria. I was absolutely convinced that even though I had made significant life changes and changed my past behavior, God was going to punish me. There was no other way I felt it could go. My shrink suggested that I talk to a priest, so convinced was I of this outcome.

I know you're saying to yourself right now, okay this isn't going to go very well. Priest dealing with atheist/agnostic/Catholic over sexual guilt? What good could come of that? But I’ll tell you in advance that this turned out to be a life changing visit.

The parish that she sent me to was not your traditional orthodox Catholic parish. Phew! It was a parish that served a population that included gays and lesbians. My shrink assured me that this guy, whose name I now cannot remember, was the guy for me to talk to.

Still I was a bit wary when he walked in for our meeting. He listened to my firm conviction about God’s seeking to punish me for my past. I told him all the bad things that I had done and slopped my shame all over that charming little room. I was certain that I was going to be told to go to confession or do some arduous penance when my litany came to an end, but that's not what happened at all.

Instead he asked me about the work I was doing then. I spoke animatedly about how much working with my teenaged patients meant to me. How much I wanted to guide them to a safe adulthood. How much I understood the challenges, the stumbling blocks, the bad decisions that go along with growing up and I how I try to be a person there for them since I remember nobody being there for me during those years. He listened intently again, and then threw me another curve ball.

"Did you ever think that the experiences you went through, the mistakes you made, helped you to become this skilled and effective doctor who really gets it when it comes to teens? The doctor who understands what teens need and how to approach them? The one they can sense understands their pain because of her own experiences? Did you think that maybe what happened to you in the past had nothing to do with punishment but instead was a building block in your becoming an amazing caregiver for a group of people, teenagers, who really need providers who get them?"

I was utterly and unabashedly stunned. I think my mouth hung open stupidly (catching flies, as my dear mother would call it). Never had it occurred to me that my life could have been a series of experiences that in accumulation could help me to be better, do more, and give more to others! Adolescent medicine had always felt like a calling to me from the moment I chose this specialty (one day I have to write about that), and I was damn good at it. Again, it had never occurred to me that the reason I was so good at it is because of all the experiences and learnings I had under my belt. Well! That truly rocked my world.

I can't say that my fear of the test result ever completely went away, but I was much calmer and felt more prepared to handle this next experience after I had had time to sit with my new framework. If I was to be HIV-positive, then my task was to be someone who can spread a message of better choices, self protection, and self-respect as a person who had had to learn this lesson the hard way. It was about sharing experiences and growth to help others.

Mercifully, the test was negative. But I never forgot that guidance I received from the priest. I lived (and still live) my life in service to others with the goal of doing everything And anything I could to help make life better for teenagers.

Brokenness

And now so many years later I found myself back slipping into old scripts and old patterns that have nothing to do with God or religion but have everything to do with the brokenness I experienced as a child.

"Jeannette, so many people are sending out thoughts and prayers for me but I've not been able to pray for myself. It seems egocentric, like hubris. How dare I ask for help, for a good result, for a miracle? God would listen. It’s too much!"

"You can and you should pray for yourself. There is nothing egocentric about that. It doesn't mean that you're expecting a miracle. It just means you need a little help making it through this tough time. And there is absolutely nothing wrong with praying for strength."

Later that night I confessed to AdoringHusband that I'd been totally unable to pray for myself. He was so surprised because he did not realize that my negative tapes were keeping me from doing something he felt would be so simple for me. I then asked him if he had prayed for me.

This is always a little tricky because he considers himself an atheist though he comports himself more like an agnostic. But he has prayed at times of great fear, confusion, or agony. So I wasn’t attempting to push him into something that was not comfortable for him. I honestly just wondered whether or not he had taken that step.

Yet he confessed that he had not prayed for me. He had helped Zara with her prayers for Mommy but had not prayed himself.

"Why haven't you?" I asked softly, my head lying on his chest.

"Why would he/she/it even listen to any prayers from me?" he replied, sadly.

"Ain’t we a pair?” I chuckled, “I don't feel that I have the right to pray for myself and you don't feel that God would listen to you if you did pray for me. What a mess we are!"

He laughed a little as well.

“Can we just lie here together and send up a little prayer for me?” I asked him.

I started to see the cracks in the façade he was holding together for my sake and for Zara's sake. For he, unlike me, was able to put off thinking about the biopsy and the what ifs until we got the results back. He was holding it all at arm’s length and that allowed him to keep it together. I envy him that ability at times.

The façade cracked a little but did not shatter completely. I cried in his arms as I prayed to God for the strength to face whatever happened next.

“God I’m scared, terrified really, out of my depth and utterly lost. Please God just help me find the strength to handle whatever happens next.”

I looked at AdoringHusband and saw his cheeks were wet with tears. "I prayed for you. I don't know if it'll do any good. I don't know if anyone was even listening, but I love you so much that I will do anything that will help you stay here with me and Zara."

Denoument

Calmer. Definitely calmer. My freak out scale managed to drop from absolutely batshit to reasonably terrified over the next few days. My silent mantra was "God help me find the strength." I never asked for miracles, just strength.

Surprisingly early in the 7 to 10 day wait my dear pulmonologist called me. I tried to remember how to breathe as I heard his fast words going into my ear.

"Well the lung pathologist got back to us a lot faster than I expected. I have her report in front of me. I’ll read the appropriate pieces to you. But I'll first say that this report is much more encouraging than the previous report. She found no signs of UIP. She does not believe that there is any fibrosis. The most likely diagnosis she believes that it is chronic hypersensitivity pneumonitis with areas of BOOP that should be responsive to steroids. We don’t know what the hypersensitivity is too, but you should get your house checked for anything unusual that we didn’t test you for."

I let out my breath with an audible whoosh. And then I started crying and could not stop. I thanked my hyperanal pulmonologist for doing this due diligence that pulled me back from the edge of despair to a point of hope and blessings.

He said that he would begin steroids for 3 to 6 month high-dose course and then a wean.

"I need to know how much you weigh for the steroid since I don't have your chart in front of me," he said evenly.

"Too much," I quipped, recovering a bit.

"I know," he deadpanned, "but how much do you weigh?"

I couldn't even be mad at him. Right now, my obesity was just another item on the list to be addressed later now that my world had turned upside down again.

I got off the phone with him and thanked God for this blessing. Short of getting hit by a bus, I might just get to see Miss Zara become a fully formed adult, rather than the teenaged almost 4 year old that she currently is.

Then I called AdoringHusband who'd gone to the grocery store. He ended up sitting in the meat cooler in his relief as I shared the particulars from the pulmonologist.

Today I’m breathing easier, dealing with my steroid surges (basement cleaning anyone?) and am taking it slowly, savoring life in every way possible. My perspective shifted just like the dual view of my wet branches diptych. I learned yet another lesson in my humanity, my faith, and the power of love. Thanks for reading along.

Lung Disease & Shifting Perspectives

Fri, 8 Apr 2011 10:04:47 -0400

I call this diptych, Perspectives. It's the same shot with two different processings. When I look at it, I find my eyes being drawn to one interpretation of these water droplets, then moving to the other. Somber/heartening. Moody/incipient. I cycle back and forth with evocation.

This diptych represents my life during the past two months. It is hard to believe that I've gone over 6 weeks without a post, especially as there has been so much going on. February and March were, in a word, hellacious. Little did I realize that the shortness of breath that I attributed to my being fat-fat-fat and poorly conditioned would turn out to be something much more elusive and potentially sinister.

I’ve not blogged about it because I just couldn’t. Usually I don’t blog “in process” so to speak. I tend to blog after I’ve had time to adjust and sit with things a bit. Yet this situation ended up being a prolonged process from resignation to horrific despair to redemption. It was the most scared I’ve been in my entire life.

For those of you who’ve followed my tweets and Facebook ramblings, please feel free to skip this retelling.

The History

I started getting shortness of breath after Thanksgiving last year. It only happened with exercise, so I thought it was just my out of shape, fat behind needing to kick it into higher gear. But then by January it progressed to the point where I had trouble even walking up the stairs in my house. I seemed to be air-hungry with even the slightest exertion. People also told me that I sounded "breathy" or "breathless" while speaking. Very weird.

I then did the right thing (finally) and went to see my doctor. After examining me, she didn’t think much of it. My exam was normal but for completeness, she ordered a chest x-ray and lung function tests. I had the CXR the same day. Surprisingly she called me about an hour afterward (a very worrisome sign when your doctor calls you directly with your test results). It was abnormal, showing an interstitial infiltrate that was felt to be aspiration pneumonia (something truly bizarre in a mentally competent, non-tube fed adult with the ability to swallow properly) but could also be sarcoid or broncholitis obliterans organizing pneumonia (BOOP...something I'd never heard of before). Again, she wasn't worried, but planned for me to have a CT scan of the chest.

I had both the CT scan and the PFTs the following week. The PFTs were markedly abnormal that Friday. The tech was all like, "I have no idea what's wrong with you!" (OK she didn't say that exactly, but she was indeed puzzled). On the way back home I stopped at Cosi for a bite and e-mailed my doctor about the PFTs. By the time I got home, she had replied that the CT scan I had the day before looked like sarcoidosis. I needed to see a pulmonologist.

I managed to get to see the pulmonologist from Abington relatively quickly. He reminded me that I didn't have sarcoid (even though sarcoid was a likely diagnosis) until I had biopsy proven sarcoid. We scheduled a bronchoscopic biopsy for March 1st.

The procedure went fine, though the Vitamin K they gave me for sedation made me decidedly loopy. I spent the week waiting for my results so that finally I could start treatment. I just wanted to feel better. But on March 7th I got the results: negative. Then I became a diagnostic dilemma and sarcoid became less likely. We were heading into the zebra zone (when you hear hoof beats, you don't normally look for zebras…).

My pulmonologist, with whom by then I was having a love-hate relationship (during my first visit, he mentioned my obesity four times!), felt I needed a diagnostic lung tissue biopsy via VATS (video assisted thoracostomy surgery...like laparoscopy for the chest). Through utter miraculous intervention of a very nice surgeon who likes my pulmonologist, I managed to get scheduled to have the procedure done on March 14th.

Despite the nice surgeon's assurances that this was not the cakewalk procedure my pulmonologist described (ventilate one lung and deflate the other; stick a trocar through the chest wall and videoscopically take lung biopsies from the collapsed lung. Shudder), the biopsy went fine. I suffered through a week with a chest tube, had one panic attack that caused one of the residents to treat me like I had escaped from the Cuckoo's Nest, but had no complications and was discharged on Friday.

The problematic issue was the biopsy itself. The hospital pathologist read it as showing UIP or usual interstitial pneumonia, something that goes along with idiopathic pulmonary fibrosis (IPF) although it can be seen in other conditions. IPF, unfortunately, does not have good treatment modalities to prevent progression of the disease. And usually people die in 2-5 years unless they have a lung transplant.

My pulmonologist, who is an even faster-talker than am I, said quite clearly that he didn't think I had IPF. He thought that if there was any chance of it being interstitial fibrosis, it would be the less severe nonspecific interstitial fibrosis (NSIF) which tends to affect more younger (ie less than 50) nonsmoking, women and has a better prognosis, since it is responsive to some therapies. Of course despite all his blizzard of words, all I heard was, "You have IPF and you are going to die air-hungry, helpless on a ventilator while indifferent residents ignore you."

Despite my laser focus on my impending death, I did manage to hear him say that he did not agree with the biopsy reading and sent the specimen out to one of the 4 lung pathologists in the country who he trusted to accurately read the specimen. He said that we'd need to wait for about 7-10 days for her review.

The Wait

One of the things you might have learned about me over the years is that I'm not good at waiting. Patience is not my strong suit. I want to know what I'm dealing with and devise a plan of attack to fight it. This inevitably led to my presuming that the worst case scenario (IPF and death) was what the biopsy would reveal. And, IPF, as I became intimately aware of during my incessant researching, is not a disease you can fight very well since no treatment really helps.

Death or a lung transplant. For days I cried. I raged. I bargained (please just let me get to raise Zara until her teens). I cried a lot more. Surprisingly for me, I chose to reach out to friends and lean on them. The more I read the words of support and prayers offered, the more I cried. I'm not a good person. I'm lying here in bed being selfish and angry because I don't feel that I deserve such a terrible prognosis. Well who the hell are you, Miss Missy? How can you just blubber and cry, "It's not fair!?" You are nothing special and deserve everything that happens to you.

Oh no, that voice was back. The voice I had lived with most of my life. That voice told me that I was such a horrible person that even God had turned his/her back on me.

"God hates me," I mumbled to my friend Lisa that Saturday. "God has always hated me," I continued, voice wavering.

Lisa, my bestest of best friends, who had been the caregiver for her late mother who recently died of aggressive breast cancer, chose not to argue with my assertion. She sat down on the edge of my bed and looked at me thoughtfully.

"Why would God hate you?" she asked simply.

At this point, you are most likely saying to yourself, I didn't know that dear ol' Teendoc was into God/faith and that whole kettle of fish. And if you are surprised it's most likely because I don't talk about it much here on the blog. As a person whose religious/spiritual journey has taken her from Presbyterianism to Religious Science (not to be confused with Christian Science) to atheism to agnosticism to (gulp) Catholicism (I converted in college), I believe that faith/spirituality is a private thing. I use it to help me to be a better person, but not to proselytize or bludgeon others with the my belief is better than your belief attitude that I often see when religion is discussed. The bottom line is that I don't know what the truth is. But I do know what helps me find my strength to go on another day. Even if I am praying to the Great Spaghetti Monster in the sky, it doesn't matter. I don't ask for miracles. I just ask for strength to go on and I give thanks for my blessings. It's simple and it works for me.

Except for when it doesn't. Like when the voice comes back and tells me all the bad things. And that's what happened during that sunny Saturday afternoon. The voice was back with a vengeance.

"Well I don't know why God hates me. I think I've just been a terrible, unforgivable person," I blurted. And even as I said this, I understood the irrationality at work in my mind, but I was powerless to stop it.

Lisa, however, stayed calm and focused. "I'm not able to see anything you've done that would make God hate you. You are the best, most giving, loving person I know."

"But he/she wants to punish me! I know it!"

"We don't know that at all. What we do know is that we have to wait for results. Until we have results we have no idea what we are dealing with."

"I KNOW that I'm gonna die!" I snapped.

"We're all gonna die someday. But I don't think this is your time now. I just don't." She looked at me with that even surgeon's gaze of hers.

I rolled over on the bed and went back to listening to that voice inside my head shrieking, "she's so wrong!"

(to be continued...)