I must have done something right!

After hearing the doctors at National Jewish finally say things like “terminal lung disease” and "less than 5 years to live," Greg and I were finally able to talk about our feelings to each other. It was tearful, of course. I still don’t know why Greg loves me so much, because I don’t feel like I do anything for him (he has always done EVERYTHING for me). But this is what he said to me: “All it takes is one look from you from across the room and you fill me up. With one look, I am whole. I am loved, cherished, enriched. I am complete. That is everything!”

Thank you, God, for whatever it is I did right! And for giving me this indescribable man to share my life with.

I should mention here that we're not buying the 5 year prognosis. I was originally diagnosed with this disease in 1995. 14 years (and two diagnosis changes) later, I'm still going -- although a little slower. Nothing about my case has been textbook, and there's no reason to think that will stop now. Still, it's a good idea to be prepared.

It's an awkward time

It's an awkward time

I'm fresh from a week at National Jewish Health in Denver, having had dozens of tests and procedures performed to try to diagnose and treat my lung disease. The final diagnosis is interstitial lung disease (probably the sub-category called usual interstitial pneumonitis), which has a very grim prognosis. The doctors tell me that if nothing changes in my treatment, I won't live 5 years. And, if treatment changes are made and one year from now I am assessed at the same lung function levels I am today, we will consider it a success. The meaning of words like "treatment" and "health management" have changed significantly for me in the last few days.

I'm on oxygen 24/7 now, which means I must calculate how much O2 (that is, how many and what sizes of tanks) I'll need whenever I leave the house. I also have to be prepared for problems like car trouble and equipment malfunction, so that means carrying spares of everything. I will never be truly portable again. And riding in someone else's car as a passenger seems like it would make it easier. But in fact, it makes it more of a challenge. I am fortunate to have a Honda minivan, which is configured nicely for a person with arthritis, with plenty of room to set my tank upright in its trolley on the floor in the back seat. Most cars (not including vans) are just not as user-friendly for people who carry O2 equipment. For me, the Odyssey is perfect.

I'm still working. My family is encouraging me to file for disability. But from what I've read, I must stop working in order to begin the filing process. Because I work a fairly sedentary job, I can still function well enough to do my work. I'm at that awkward stage where it is an inconvenience (and annoying) to deal with the tanks (I usually carry 2, just in case), but I can still do my job. This sounds like a bad situation to be in. But when I think about the next phase of this disease, I can't believe I haven't pursued the disability claim yet. I never thought it would be difficult to make this decision, assuming that "decision" is even the right word. It's not like I can just choose to become disabled. The decision will be made for me by analysts who examine my medical data and absentee records. My choice, I guess, is in deciding when to stop working. But if I can work, I want to work. It is a dichotomy. And to make it more of a challenge, I don't particularly like this job that I'm still capable of doing.

I'm guessing that at some point (a few weeks? 6 months? A year?) I won't be able to carry enough O2 with me to do a full day's work, or I will feel too bad to come in to the office. When that happens, the disability "decision" will be easy. In the meantime, my family doesn't understand why I continue to work. I'm not sure I do either, except that part of me is scared to death to stop working.

Walking with Monty

 
Yesterday I took my dog, Monty (Basset hound), for a walk. Or I tried to. I was using a small portable O2 tank with a conserving regulator set at 5 LPM. 5 LPM is lower than my official dose of 6 LPM when active, but it is the highest setting on that regulator. It has been sufficient in the past, at least for the most part.

Usually, if my O2 saturation rate drops below 92, I will slow down or stop or focus on my breathing method and my O2 usually comes up to an acceptable level. But this day that didn’t happen. Even though I was doing my breathing exercises the entire time, my oxygen levels hovered around the low to middle 80’s during most of the walk, whether I was going uphill or down, and it didn’t recover when I stopped. Even Monty, who thinks of a walk as a long series of smell stops, thought I was going too slow. It wasn’t until I reached the driveway that my O2 sat rate finally climbed to 90.

I know I need to order the high liter flow conserving regulator that goes up to 6 LPM. There is only one made that goes up to 6, near as I can tell. Once I surpass that liter flow dose, I’ll no longer be able to use conserving devices. My world just keeps getting smaller and smaller.

I realized a few days ago that it will be tricky for me to negotiate a buffet line at a restaurant now. My husband and I used to love to go to Furrs with my parents. Greg tells me not to give Furrs up yet, that he will carry my tray. I am so very lucky to have him! I will be giving up a lot of things in my life over the next months and years, and he is determined to make that progression as slow and as painless as possible. I love him so much.

Memories and blessings

Memories and blessings

Every once in a while something triggers the thought that there are many things I'm going to miss in this life. It usually starts out when I am petting one of my cats, or gazing at the mountains on a particularly clear day, or talking on the phone with a relative. But lately it always ends up with the image of Greg and me crying the night we first broke down about my prognosis. We wept together, speechlessly, at the dining table on the patio just as it was getting dark. I have never seen Greg so broken, sad, and afraid. It very nearly broke me in half. I hope I never see that look on his face again. But I know I will.

I remember the first time it occurred to me just how important memories are. I've always been the type to dwell on bad memories, criticizing myself and replaying the memories of regretful mistakes over and over in my mind. I'd always wished I could selectively recall only the good things, and just let the bad things go to the wayside, as long as I've already learned their lessons. I thought that life would be better if it were filled only with the memories of good times, successful choices, admirable acts, and kind or thoughtful words.

Even the negative memories are crucial to the balance of a meaningful life. The seemingly simple function of recording and retrieving a memory is actually an amazing thing. Memories are carved into the brain like grooves, and the more often a memory is retrieved (recalled), the deeper and stronger that wrinkle becomes. So why don't we do that more often with the happy memories, so they can be retained accurately and clearly long into old age? (Perhaps some of us are better at this than others!) But the reality is that even the unpleasant memories are sweet and enriching, in a bizarre way, partly because they trigger strong emotions that are sharp reminders that we are alive and human, but also because they play such a great role in shaping our ultimate character. On a more basic level, memory is just another function of the human body, any one of which may fail eventually and we miss it when it's gone. After watching my mother gradually lose the ability to recall her memories accurately, I came to the blunt realization that the simple ability to recall something -- anything -- is a blessing, even a luxury.

An advocate

An advocate

Today started with a bright-and-early trip to the pulmonologist. My diffusing capacity (the ability to pass oxygen and carbon dioxide across my lung tissue) is continuing to decrease. Greg and my sister, Susie, met me at the doctor's office to go over my results and talk about the future and my upcoming trip to the National Jewish Hospital in Denver. Susie has volunteered to be my advocate in filing for Medicare and disability, so she asked those types of questions to Dr. DeHart. The doc's advice is to go ahead and begin the filing process now. She said that the lung function test numbers (like the diffusing capacity) usually makes the disability decision process fairly straightforward. So at least there's that. It is so wonderful having Susie handling this part of the nightmare. Greg is overloaded and overwhelmed, and I am exhausted most of the time.

We also submitted the form for requesting a disability tag for the car. Doctor mentioned that she was checking the Permanent box, not the Temporary box. Not sure if it was that or any number of other things, but Greg began to choke up a bit, which immediately makes me cry these days. I just can't stand to see him so unhappy and scared. That is the very worst part of all of it. I am scared for him. I love him so much.

After the doc appointment, I went in to work for the afternoon. I am still working, but who knows for how long. My tank didn't last me through the day today, which is bad. I need to be prepared for this and to be able to increase my oxygen when I need to. I sometimes fear that things are progressing much faster than I realize.

It's all okay

It's all okay

There is a saying (sorry, don’t know who said it) that goes like this: If things are not okay, maybe it’s time to redefine okay.

I was driving across town today and it occurred to me how silly I must look. I'm carrying an oxygen tank full-time now, with a hose pushing oxygen into my nostrils. No, that's not actually the funny part. I happened to be driving Greg's (my husband) car, which is an old minivan loaded down with a canoe rack on top and a bicycle rack on the back. Anyone looking at the vehicle itself would assume the driver was an athletic, outdoorsy type. Instead, here I am, a 50 year-old woman who drives around for 10 minutes in a parking lot looking for the closest spot I can find, and then, walking slowly and deliberately, heads straight for the door (no extra footsteps for me, I'm all rationed out. If I encounter stairs, I usually have to stop on the 5th step to catch my breath). I imagine that people look at me when I'm in that car and scratch their heads trying to piece it together.

I've decided to think of this oxygen tank as a new and different accessory. It even gave me an excuse to go shopping for a new handbag, which as it turned out, is a small backpack with enough space for the tank AND my usual purse contents. It is actually a Camelbak hydration system for cyclists, but after removing the bladder, my small O2 tank fits inside perfectly, with a little room left over for my necessities in external pockets. A shopper questioned me about it at the grocery store, because her mother is still lugging around the uncomfortable and cumbersome bag that comes with the tank. I referred her to REI and recommended that she bring the tank (and her mother) along to test it out.

The hose and canula are the parts of the thing that really make me feel old. I mentioned to a coworker that I was thinking of threading some beads on the tubing to make a fashion statement. With a perfectly straight face, he replied (yes, 'HE!') that what I need to do is to Bedazzle it.

I'm considering it.

Life Itself is Grace

Life Itself is Grace

"There is no event so commonplace but that God is present in it, always hidden, always leaving you room to recognize him or not to recognize him. Listen to your life. See it for the fathomless mystery it is. In the boredom and pain of it no less than in the excitement and gladness: touch, taste, smell your way to the heavenly and hidden heart of it because, in the last analysis, all moments are key moments, and life itself is grace."

-Buechner, (Carl) Frederick

I'm finding a way to make the most of the time I have. But the reality of it is, it would never have been long enough anyway.