Monday, December 13, 2010

2 Monitoring

I saw the doctor last Monday because I am trying to be proactive in learning how to live with my newly-diagnosed disease of Pulmonary Fibrosis. My appointment to find out what the blood tests showed about the presence of PF producing autoimmune diseases had been set for December 21st. But it may as well have been July 21st.

Waiting for the results was a “turning, turning slowly in the wind” torture because if I didn’t have any of the seven diseases that I was being tested for, then the next step is a seriously serious in-hospital surgery to take two slices of my lungs. The specimens can show if my PF is environmentally caused (and therefore, not apt to progress), or if it is actively inflamed, which means it’s going to take me to the end of my earthly pilgrimage. It would then be labeled as IPF (idiopathic pulmonary fibrosis), meaning “they don’t have a clue why I have it and there’s nothing they can do about it.”

My daughter Elena has become a warrior woman of pro-activity due to her own struggles with an autoimmune disease and myriad ramifications and the multi-surgeries it has brought with it. She suggested that since I might have to have the surgery, I could ask my pulmonologist if he were willing to tentatively schedule a date with the surgeon and hospital so I could have it before the end of the year. That way, since I have already met my insurance deductible for this year, I could save myself several thousand dollars of expense at the beginning of the year. That suggestion prompted a volley of calls with the doctor’s office manager that eventually led to the earlier-than-expected appointment this past Monday.

I’m sure the doctor understood the unspoken sense of urgency that was behind my wanting to get the surgery over with, if in fact, I was going to need it. And since the results came back negative on the 7 autoimmune diseases he tested me for, it’s more probable now that I will need it as the final indicator of what kind of PF I have. He’s a young doctor (early 40’s maybe?) but I believe he is both cautious and wise (a really good combination for anybody in whose care you place yourself).

He told me that there was one slot open with the surgeon before Christmas, but he advised me to wait. He wants me to get another set of CT scans and breathing tests in February, so he can monitor if the scarring in my lungs is progressing (signs of inflammation) and if so, be able to assess how quickly. This plan of monitoring sounded like good advice to me (and to Cari who is walking this journey with her mama). So we set an appointment for February 10 to see him again. In the meantime, I will have an echocardiogram, the CT’s, and the huff and puff tests again.

After my visit with him, I realized that I’m still going to be “turning, turning” but somehow it’s okay now. I once again remember that we’re all “turning, turning” from the moment of our birth. Not to put too fine a point on it, life is a journey of heading into death. We are vulnerable to myriad vagaries and vicissitudes for which we cannot prepare. As we are jerked here or slammed there by one thing and then the next, we know that any one of them may be our last earthly experience.

Certainly, it’s this understanding of our fragility and limited abilities as earthbound creatures who will all eventually return to the dust from whence we came that makes the gift of life we have so incredibly, awesomely precious. It means we have the possibility of being grateful to God for all things that come our way so that I can say "PF I love you" because you are an agent of transformation for me. And it makes each day the only day we have--the wrapping of the life-gift that is ours to stare at in numb-terror or to unwrap with contagious jubilation. Today, I choose jubilation. I plan to monitor myself and see how I am doing.

Will you pray with me?

Giver of Life,

I thank you for the gift of today and ask that you will help me become so finely tuned to the great blessings that abound within it, I will jubilate my way into tomorrow, whenever tomorrow comes. Hallelujah! Amen.

Saturday, November 27, 2010

Empire Building

# 1 Empire Building

Here is a copy of the email I sent after my diagnosis was confirmed on Nov 23, 2010:

Dear Family and Friends,

There's good news and there's bad news. Many of you know that I have been undergoing some tests for my lungs and yesterday I got a diagnosis of pulmonary fibrosis. The good news is that I decided to continue my insurance policy in September, in spite of the allure of not paying the $18,000 it will cost to keep me covered until I'm eligible for Medicare. The bad news is that I'm going to be using my insurance a big hunky bunch.

Pulmonary fibrosis falls into two kinds: known causes and unknown (idiopathic) causes. The known-causes also fall into two kinds: environmentally-related and autoimmune disease related. I was tested yesterday for 7 different diseases, most of which I don't know what they are, and one of which if I have I'm going to dress up in my doggie costume, go down to a compassionate vet and have myself put down. I exaggerate only slightly.

I will know in three weeks if it is disease-related. (My next doctor’s appointment is Dec. 21st) If it is not, then I will need to undergo a surgical test to have some "slabs of lung" (to put it delicately) cut out for close scrutiny. They will be able to tell if there are particulates/foreign bodies that have caused it all. It will require hospitalization for several days and three weeks or so to recuperate. If it is environmentally caused, then rejoice with me, because it is the best case scenario out of the three. It is not apt to progress and I am certainly willing to live with my damaged lungs the way they are as long as they are willing to live with me.

The next best scenario is the disease-caused fibrosis, depending, of course, on what the autoimmune disease is. That would mean a whole 'nother set of possibilities and prognoses for the future.

The worst-case scenario is actually the most likely one--the idiopathic, unknown cause one because that's the one that will continue to progress until my lungs shut down completely. It seems that most of PF's are idiopathic. My pulmonologist says there are several treatments that can be tried, but they suck bilge water (my words, not his) and are highly ineffective. It seemed to be his opinion that they really are a waste of money and effort. He mentioned some study trials being done in San Antonio and Dallas which I might or might not be eligible for. He mentioned lung transplant and reluctantly told Cari and me that the average time between diagnosis and death is 5 years. I think my response was a non-ministerial word.

So, like we all are, I'm on a journey I could not have foreseen, but I know I am surrounded by the love and good will of my village of family, friends and colleagues. I know that I am created and sustained within the passionate embrace of the Source of All that is, and that whatever lies before me, the Lesson of Life is love without end, and Love will see me through to the end and beyond.
Here's to joy-filled journeys! Ma/Mommy/Mamasan/Sister/Kathleen/Kathy

If the PF is a secondary result of another autoimmune, connective-tissue disease, most of them are disabling and painful (like rheumatoid arthritis). Only one (sarcoidosis) looks like there could actually be hope for some improvement. If I have something that was caused by asbestos, or exposure to inhaling certain gases or dust contaminated by bacterial, fungal, or animal products, then I might already be at my very worst. The lungs are scarred all they will be; certainly the symptoms I have now I can learn to live with. But, if I have IPF (idiopathic pulmonary fibrosis) for which there is no effective treatment or cure, then I’m like the fly on my breakfast cantaloupe: sooner or later I’m doomed for the swatter. No h-o-p-e for a reprieve or easy exit.

But, in the meantime, whatever the cause or prognosis, I want to suck out all of the sweet juices of life that are yet left to me. I want to keep staring straight into the heart of love and goodness, and take everything else in my stride. I’ve had a lot of experience of rolling with the punches and I hope (and pray, and hope and pray) that when I call on them for this new phase of my journey, the skills and wisdom I’ve honed from life will “do me proud” (as we in Texas like to twang). I pray not only that I will live well until I die, but that I’ll die well (be it next year or 30 years from now).

Of all the gifts I want to give my three children and four grandchildren (and any interested onlookers), surely modeling for them how to live well and die well are at the top of my list. Well, there’s one more thing. In the 1970’s I spent three years hooking a six-foot round rug that noooooooooo one in my family wants to inherit. I’m determined to give it to one of my children; my son says to leave it to the one I like least—he thinks he’s in no danger! Nnya-nya-nyuh.

Last year, my husband of 40 years, Juan, modeled that living well/dying well paradigm for us. Pancreatic cancer came and snatched him away in just 4 ½ months from diagnosis to death. It was a tsunami of pain for him, for me, for our children, for his mother, his sisters, his extended family, our church family, and community. But it was also a great celebration of life and love in the midst of it all. (For his and my joint daily blog of this experience, you may read it at

It’s been less than 15 months since he died. None of us who were deeply connected to him by the sinew and bones of love-- none of us have fully come out of the darkness of the grief and sorrow that his painful disease and body-wasted death pushed us into. And now this. Hmm. I am grieving for myself. I am grieving for those who love and cherish me.

Like pancreatic cancer, PF stuff is sneaky. By the time you have any symptoms that you might seek a doctor’s care about, it has completely taken up residence in your lungs and is building a mighty empire with intentions of conquering all it encounters. The symptoms of PF are mainly: shortness of breath (particularly with exertion), chronic dry, hacking cough, fatigue and weakness, chest discomfort and pain, loss of appetite and rapid weight loss. (This last being the only symptom that has any real appeal for me.)

Scar tissue now encases my lungs now at 80% capacity. Anomalies and two large nodules speckle the interior CT scanned view of them like so many comets and planets in the night sky. (When I find out what those non-PF related blobs are is yet-to-be determined.) And, like busy little fire ants building a mega mound, PF is constructing a webby platform of scar tissue and papery air sacs that are already interfering with my breathing and crackle if I slump a little when I have my feet propped up.

The inevitability of my death has always been a fuzzy, wobbly sort of knowledge that hovered in and out-of-my awareness until it took up permanent residence in my teen years. As someone who learned in her dysfunctional childhood that the needs of others always take precedence over my own (visit, it’s taken me a long time to learn to cherish myself and look to my own needs first.

At 62 years of age, I’ve finally learned to set boundaries for myself and others. I have learned that it is best not to be blown around emotionally hither thither and yon by either gentle breezes or terrifying tornados. I know that I am not in control of what is, but I am in control of how I respond to it. So I try to respond to everything with good will, good humor and good chocolate chip cookies.

My journey into maturity has led me (with many-a detour) toward re-acquiring those vital skills I practiced as a beautiful newborn, adorable infant, and cute tow-headed young toddler. As I study children now, I know that I was the same in my childhood: I naturally accepted each day with joyful astonishment at whatever came my way. No judgments. No demands other than my body made to keep me alive and comfortable. I trusted those who ordered and directed my life without a parsimonious ego, suffocating anger, or paralyzing fear tripping me up at every turn.

In my innocence, I had no concept of time or space. And everything I tasted, everything I heard, everything I smelled, everything I felt had neither beginning nor ending. It just was. I was completely at home with myself and my surroundings. My life was a state-of-being: my life was my play, my play was my work, my work was my love, my love was my home. I was at home in my own skin and I loved myself without trying.

That has been my goal the last 15 years or so. I have learned to love myself and I have learned everything about myself. Now that means that in some way or fashion, I can even learn to say, "PF I love you," for PF is the agent that is going to accompany the last part of my life. And because the certainty of death—my particular, one-time-only death— is closer now than ever, my desire to become childlike again (in the best sense of the word) has gone into warp speed.

So. I’ll see how I do. Stay tuned.

Will you pray with me?

God of the Ages,

To everything there is a season and a time for everything under heaven. I give you all thanks that today is my season and my time. I am grateful for the incredible wonder of the heavens, and of the ability to scan the inner workings of our bodies in a journey of discovery and knowing. I thank you for the days, the years, the decades of my life that has brought me to this place. I am grateful for those who have stood in line before me and given me the opportunity to spend my own season, my own time with love, and meaning, and beauty. And I am grateful for the generations who now stand in line behind me and connect me in love and life to the generations yet-to-be.

O let it be that we all come to join the anthem of joyful praise to you! Let us sing songs of thanksgiving for the breathtaking wonder love and the celebration we know in being alive! Let us rejoice in the privilege of being a part of your created order who have sprung from your Passion and in due season return Home to you. May it be so.