Sunday, January 23, 2011

On Staring Death in the Face

The information in this post, which was originally titled “On People and Places that Evoke Grief”, covers events that have occurred over the past 6-8 months and follows up a separate post. I have chosen to post my initial writing on this topic below, with an update following. Some of this information may be familiar as I posted about my daughter’s teacher in a separate previous post. Please know that this is not information that I find easy to share (and may not be easy to read), but for the sake of staying true to my journey, I feel that I am able to do so now. Just bear with me and keep reading for that update.

I hate the fact that after nearly four years, grief can still blindside me, but it does.

My daughter started first grade in August. Naturally, I did not expect this to be a source of grief for me, but it was for more reasons than I could have imagined. I have mentioned here before that my wife was a teacher by trade. She spent most of her short teaching career in third grade, but was moved to first a couple years before she died. And for some reason, my daughter being in first grade has bothered me. She doesn’t attend the school where my wife taught. Her teacher doesn’t look anything like my wife did. But still there’s just something that evokes grief in me.

Maybe the fact that her teacher is young and pregnant with her first child doesn’t help. My wife was still teaching third grade when she had our daughter, but it was at a similar time during the school year. Plus there’s the whole “excited about the first child/happy to be expecting” sense that surrounds the teacher. Don’t get me wrong, I’m very happy for her, it just makes me grieve for that happy time in my own life when I think about it. If she was having a girl, it might just push me over the edge, but she’ll be the proud mother of a little boy this winter, so I think I’ll be okay.

That was enough on its own, but there have been some other, even more significant events, that have taken place over the past few months. When I wrote
this post last summer, I felt like it was something that needed to be written, I just wasn’t sure why at the time. Now I know. I mentioned then that I did not believe the breathing issue I had in June was bronchitis as the med center doctor had diagnosed.

There are times when it’s better not to be right.

After I posted that it occurred to me that, because of the way the symptoms presented themselves, it was more likely adult-onset asthma. I researched every lung disease I could think of and the only symptoms that even remotely matched were in-fact, those of adult-onset asthma. So I headed to my follow-up appointment in August fully prepared to talk to my regular doctor about this possibility. I didn’t even have to mention it. He was concerned that I was still having minor symptoms and sent me to the hospital for spirometry, which is the first step in diagnosing asthma.

That’s right. I said hospital. As in, my first visit to the place where my wife took her last breath.

And as it turns out, the first open appointment just happened to be on the first day of school. So I dropped my daughter off at school and headed across town to the hospital. I was able to enter the main doors, which reminded me more of when we were there having our daughter than the day my wife died. My chest didn’t immediately seize up and my breathing rate didn’t increase. I felt pretty normal physically, but my mind was reeling. I managed to keep it under control and completed the test when it was time. It showed that my lung capacity was diminished, but improved significantly with albuterol, which was what I expected. I went off to work and braced myself for an asthma diagnosis from my regular doctor.

When they called with the results, the news was not as I expected. There was no diagnosis of asthma. No establishment of an asthma action plan. There was only a referral to a pulmonologist for further assessment.

I froze when the nurse gave me the name of the pulmonologist.

I live in a small city, but there is more than one pulmonologist. I know of at least two by name and am aware that there are a few others around. My doctor unknowingly scheduled me with the pulmonologist who tried to revive my wife the day she died. I thanked the nurse and promptly sat down. My immediate thought was to call back and explain my reason for not being able to see him. But the longer I thought about it, the more I developed this need to see him. I remembered him as being very kind when he spoke to me about some tests they ran on her earlier in the day. I also remember the look on his face when he and the internist came out of the ICU wing to tell me they did not believe they could revive her. I have no hard feelings toward the man. He did everything he could to keep her from dying.

Unfortunately, everything wasn’t enough that day.

I couldn’t get an appointment for about six weeks, so I had a lot of time to worry/fret/agonize about the appointment. By the time it arrived, I was almost as excited as I was nervous. I take my health pretty seriously and have most of my adult life. Being a sole parent makes me even more conscious of it, especially given my wife’s health-related battles. I know that asthma is not a great thing to have, but it is manageable and I was ready to have an official diagnosis so that a treatment plan could be developed and I’d be able to feel and function better than I had been.

I was equally nervous because I was going to see this doctor for the first time in almost four years. It was over an hour before he finally came into the room and in that time my mind raced with different scenarios. The one I liked the best was the one where he entered the room and recognized my name or face and validated my loss in some small way. I knew it was a long shot, but that’s the one I had settled on when he finally opened the door. His face was a blank slate. If there was any recognition at all, he did not show it.

I realized then as I do now, how absurd it is to think that a doctor who has encountered countless patients in the intervening years might actually remember the husband of one that didn’t make it. But I still needed to find out. He conducted the appointment as I’m certain he does with all of his new patients. So I allowed myself to return to excitement about the possibility of getting an actual answer at this appointment.

When the exam was over, the news was not what I expected. There was no diagnosis of asthma. No establishment of an asthma action plan. There was only a referral for a follow-up chest x-ray and more tests.

I scheduled all of the tests and returned to see him three weeks later. I still had some level of excitement about receiving some answers, but they were covered by the fact that I was more nervous than ever and pretty sure the diagnosis was going to be something other than asthma. I worked the computer keys and stretched the limits of my internet search engine, but I still couldn’t find anything with symptoms that even remotely matched mine, other than asthma.

When I returned for the follow-up appointment I was given an answer, but it only lead to more questions.

This is the point where I may upset some of you, but for now I have decided not to state what my diagnosis is. My main reason for this is that there is such a wide-range of information on it that I want to talk to my doctor about my specific prognosis before I give it a name on this site. I will say that I found it incredibly overwhelming to read one reputable site that talked about the slight possibility of spontaneous remission (their word, but he is positive it is not cancer) and another equally reputable site that talked in terms of life expectancy.

In single digit years.

I am trying really hard not to dwell on that type of my condition. I don’t believe that’s what I have, though it is likely to get progressively worse over time regardless of the type I have. But I can tell the possibility is nagging at me even when I don’t entertain the thoughts. I’m not depressed, but I am also having to be really careful not to be. The possibility of slipping into depressive habits is inviting, but I have to resist them for my own sake and the sake of my child.

Right now we are in a “wait and see” period. This in itself makes me hopeful that I do not have an advanced form of this disease. I am not currently on any medication for it, and when I do have symptoms, the onset is gradual and the pain is minimal until I rest. I am still able to function just as I was before, only I have to be careful about how much I exert myself at a given time so as not to become worn out. I have a follow-up appointment in two months where we will reassess the situation and the doctor will determine if medication and/or additional tests are necessary.

Like I said, wait and see.

I have debated about if/when I should post this information. It doesn’t seem fair to say there’s something wrong and not give all of the details, but it is also very hard for me to talk about it at all right now. In fact, as I am writing this, I have not told anyone, including my parents. But by the time you read this I will have told them. I was in the mood to write about it tonight and am hopeful that it might be the catalyst for helping me actually verbalize these things to them. We have some family friends who have/had lung issues, and none of them have been good, so my mom especially is a little gun-shy about them. I will tell them when I finish working up the nerve.

And I will tell you all more when I am able to share more as well.”

UPDATE: I had my follow-up appointment with the pulmonologist yesterday. I have felt better in general for the past few months, but had tried not to allow myself to get my hopes up. The disease I was diagnosed with was not one that I was likely to recover from, and even though when I wrote my initial post I was trying hard not to think about the possible repercussions of my disease, I lost that battle more often than not over the two months between that original writing and this update.

It’s a scary thing to stare death in the face. Most of us know this, but from the vantage point of our spouse’s death and not in terms of our own mortality. That was one of the many reasons I could not post this when I wrote it and why I only told my parents this information earlier today. I have felt like I needed to carry this alone for now. One of the friends I mentioned above is also on the losing end of her battle with lung disease and I just couldn’t tell my parents that they might be facing that with me before now.

It’s hard to think about the possibility of not raising my daughter to adulthood. The first emotion I encountered was anger at the sheer unfairness of it all. She has already lost her mother and now there’s a chance she might lose me too? So my goal became to fight this thing as hard as I could with the hopes that I could at least see her off to college. I thought about the possibility of what my life would become as my disease progressed. Would I be able to stay in the South, or would there come a point where I would have to move to someplace where I had a better support system? How long could I continue to work? What would I do about health insurance when I couldn’t work anymore? I wasn’t worried about what would happen to me after I died, just what would happen to us beforehand and my daughter afterward. And the emotions I’ve written about here barely scratch the surface of what I have felt the past three months.

So I tried not to be too hopeful as I headed to the pulmonologist’s office yesterday. After all, I had been optimistic the first time and that hadn’t exactly panned out. I went in for my pulmonary function test (PFT) which is similar to spirometry, but more thorough and less expensive. During the first portion the tech said that things hadn’t gotten worse and that was good news, but she remained silent about my performance on the rest of the test. So I went back to the waiting room for a long while (I always take a book with me, since I know I’ll have to wait) before being called back to a room. When the doctor came in, we reviewed my information and it again was not what I expected.

This time there was an official diagnosis of asthma. There was the establishment of an asthma action plan. And most importantly, there was a change from my initial diagnosis and a lifting of my impending death sentence.

It might seem cliché to say that I left his office breathing easier, but I did. In fact, I think I was in shock about the whole situation, which is why I didn’t call to tell my parents about it until today. I can’t quite describe the feeling of thinking you’re going to be given a time frame on life expectancy during an appointment and leaving knowing that you have a completely manageable condition and can expect to live a full, normal life (and consequently, that you were right all along in terms of what was really going on in your body.)

Now, before I get a bunch of negative comments or e-mails about the doctor unnecessarily putting me through this, I want to state that I have no ill feelings toward him and plan to continue seeing him as my pulmonologist (though I’ve been cleared till June!) I don’t believe anything is ever wasted and that there must be some reason I needed to experience all of this, even if I am unsure of that reason at the present time. My doctor made the initial diagnosis based on my symptoms and the results of my x-rays and PFT. And it all fit with that diagnosis. Apparently what I actually had were symptoms of asthma which had been exacerbated by an undiagnosed “walking” pneumonia. (To further complicate things, my asthma symptoms do not follow the normal pattern of development). Once the pneumonia cleared, he was able to see that it was asthma versus the initial diagnosis (hence the reason for the “wait and see” period I’ve endured the last three months).

When I wrote the initial post, I said that I wasn’t ready to give my original diagnosis a name on this site. Now that it has been changed (and I believe, rightly so), I have decided to name it. I would encourage you not to do any research on the condition though (this means you Mom and G!) as most of the major medical sites paint a dismal outlook regarding prognosis and recovery (with the exception of the slight possibility of “spontaneous remission” I mentioned above). My original diagnosis was something called interstitial lung disease. My current diagnosis is adult-onset asthma (of unknown origin).

This post has become longer than I anticipated and I really should have made it two. But I didn’t like the idea of finally telling you all of this and then making you wait for the update, now that I have one. I am happy to say that right now, my overall health is pretty good.

But my overall outlook is even better.