The following is the communication from 2010-2011 to my family & friends after receiving the diagnosis of Idiopathic Pulmonary Fibrosis (IPF)
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 12-21-10) 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. 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 www.caringbridge.org/juaninamillion.)
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 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 the tab “IamFay T), 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 that has sprung from your Passion and in due season return Home to you. May it be so.
A letter I sent to family and friends in late fall of 2010:
I saw the doctor on 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 he 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.
Here is what I told my family and friends after I learned the diagnosis of IPF in early January of 2011:There's good news and there's bad news. I have been undergoing some tests for my lungs and on Tuesday 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 in three years. 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) cause. The known-causes also fall into two kinds: environmentally-related and autoimmune disease related. I was tested on Tuesday 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 my PF is disease-related. 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 (and I survive the surgery!) 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 that's the one that will continue to progress until my lungs shut down completely. It seems that a huge percentage of PF's are idiopathic. My pulmonologist said there are several treatments that can be tried, but they suck bilge water (my words, not his) and are highly ineffective. He implied or I inferred 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 (my younger daughter) and me that the average time between diagnosis and death is 5 years. Her response was a tearful, stricken look. 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! Kathy (end of email)
I certainly won’t be the first in my family to die--my ancestors, like yours, go back to the first hominoids of what is now East Africa, and earlier yet to the AGCT of the DNA we share with the proto-human fish that evolved into a creature with legs and crawled out of the primal sea. The history of life on earth is part of my family photo album. But in the 1990’s, both of my parents died within two years of each other, and their physical disappearance off the face of the earth (and those of my relatives of their generation) left me with a sense of being at the top of the Twilight Zone between life and nothingness. My three sisters and I were suddenly orphans. Gone was the sense of another generation above me, providing some security between this puny, helpless earth-creature and the weight and the vastness of the created world had given to us in a baton-pass we had not ever practiced.
In face of their loss more than a decade ago (and that of my husband of forty-years, Juan, a little over a year ago) it has been helpful to me to have faith that there is a divine plan to it all. A plan that promises the evolution of human life (at least) into some other form, dimension, or experience beyond this one; a sort of instant transmutation from fishlet to homo sapiens without the fuss and bother of the millions of years in between.
As an ordained Christian minister in the Presbyterian Church (U.S.A.), as the wife of a Christian minister, as the daughter and niece of Christian ministers, I have spent a huge portion of my days and years believing, studying, teaching, and preaching the hope of that promised life. I believe I have had occasional, partial glimpses of some sort of "resurrected life" in my homo sapien experience and I relish the thought of an eternal extension of it like a chocolate-junkie relishes the thought of the next brownie.
Believing and hoping in some sort of life-after-death are the tools of faith to help us navigate the sorrows and terrors of our earthly journey. But, and it’s a BIG But, just because we believe it and study it and teach it and preach it, and hope it is true, don’t make it so (as I like to say in my acquired TT--Texas Twang). The divine Fishmonger may have other plans. Better plans. Or this earthly life may be the Only Plan. The Instigator of Life may believe that life itself is enough. It’s a pity so many of us don’t.
But we humans are a self-conscious breed, and enough never seems to be enough. There’s nothing we like better than to know something. We want to know it more and we want to know it better’n (TT) anyone else. And, we like to think we’ve already figured out what’s comin’ up next in line after life on earth. And boy howdy! We don’t just pencil it in as a possibility; it’s a done deal, set in concrete, or at least set down in permanent markers.
I suspect that from the divine perspective, our permanent markers are like the crayons my two-year-old grandson uses to squiggle on his paper placemat when we go out to eat at a restaurant: colorful but mostly meaningless to everyone but him (and admiring onlookers!). But even to adoring family members, his colorings are highly dispensable. Certainly the clean up staff don't notice them as they stack greasy napkins on top of those precious markings and tote the whole wad off to the kitchen dumpster.
Our childish colorings about life beyond this one is a diversion, a distraction, from our creaturely business of living as suckling babies in God’s (metaphorical) arms. Heaven and the comfort we derive from living for it is as addictive as chocolate, cocaine, sex, gossip, war (fill-in-your-own-blank). To think about a life better than this one, a life in the sweet by and by without any pain, struggle or sacrifice is mesmerizing. We call it the hope of heaven. But it is wishful thinking--a hope of our own making, because it is focused on life outside of this one. God’s hope is focused on this life: this here, this now, this generation, this pain, this struggle, this need, this child.
If we’re busy looking to the future, we’re not paying attention to the present. But when we live in the moment (LIM) we learn to recognize injustice in all its insidious masks and we discover that an ounce of prevention is worth 2 tons of cure. When we LIM, we learn to practice kindness (the visible form of compassion that is the womb of new life for those hurting, lonely, neglected and dispossessed). When we LIM, we are transformed into people of mercy—a word that connotes not just compassion, but includes aggressive forgiveness—a divine practice indeed! Sacred writings and history tells us that the potent TNT of compassion plus aggressive forgiveness shatters the power of war and conflict and ushers in startling glimpses of peace outside of our selves, and within ourselves—a peace that connects us to one another and to the Whatever that exists beyond our moments.
Such a way of life can lead to a state of being able to live with a sense of mutuality and respect for all humans and other living things (the biblical definition of humility). It can teach us how to live with a sense of potent love for ourselves that eventually spills over into love for others. Such love is the DNA of life, the spiritual and emotional double helix inside the cells of every living thing on earth. Love is life’s cause and love is life’s destination.
That is why I want to learn to say (and mean it!): "PF I love you" for it is the present moment I am facing. If I fight it, if I hate it as my enemy, I will only be rehearsing yet again what I’ve been doing since my first tantrum. I don’t need this to learn that life is hard. I already know that. I have learned well that shit happens. I’m not so sure that everything including shit, happens for a reason. It seems to me that some things that are evil and despicable and totally unexplainable just happen, just as some things that are wonderful and admirable and totally awe-inspiring just happen. Be it shit or grace, either way, it is out of our control. The only thing we can control is our response to it. What I am totally convinced about is that even though shit happens, grace prevails. Grace uses shit as compost for a future garden of love, humility, and peace, in the midst of the hardships, pain and loss. And that is totally unexplainable too.
Two months ago, I knew diddley squat (TT) about PF. Now I know it is a permanent, integral part of rest of my days, and it is going to have a powerful punch--not only in my life and on my life, but in/on the lives of my children and grandchildren, my sisters and others whom I cherish and who cherish me. Alas, my children will be orphaned. Alas, alas.
My two youngest grandchildren are Thomas, the two-year placemat artist and Isabel, my sole granddaughter. She is a seven-month old who coos and sings and vocalizes an exultation of spirit that envelopes her whole being, the music of the spheres expressed through the blood and bones and sinew of her little body (and big feet!). In French, such joy at being alive is called joie de vive, a state-of-being that I believe all humans come hard-wired for. Alas, neither of them are not likely to remember me, as Isabel’s two older brothers, Antone and Ian, might.
Alas, my good-bye is probably going to be prolonged and full of really, really hard experiences. It takes my breath away to consider it, and I now look with some envy on my husband’s pancreatic cancer that took him in the blink of an eye. Pulmonary fibrosis is my very own, Kathy-shaped agent of good-bye—unless, of course, it is autoimmune disease or environmentally-caused, which would mean I would have a greater chance of dying at 95 from being run over by my mother-in-law in her red Jeep! But it may be over a month before I learn the prognosis.
Regardless of that prognosis, I claim this Moment of Life that I have, and the next one and the next one in the days that are left to me. I do not want to be a human-doing for the rest of my life; I want to be a human-being again. Like the child I was, I hunger and thirst for a prevailing, lingering personal sense of joyful astonishment at being alive each of the moments I have left (especially those moments when I'm distracted by chocolate doughnuts!).
And I covet an exultant joie de vive to finally envelop my whole being until it is as organic and natural as breathing was to me BPF (Before Pulmonary Fibrosis). If this is in fact humanly possible (with all the divine intervention I can get), it is my belief and hope that I will be able to continue to exclaim with the countless generations that have gone before me and that are yet-to-be, "Now isn’t this life the most amazing adventure? What a gift!" It is my hope. May it be so.
- Please note the following:
- If you would like to know my and my husband’s thoughts and feelings as he was dying of pancreatic cancer in 2009, you may go to www.caringbridge.org/visit/juaninamillionjournal
- If you are interested in learning more about my growing-up days with my parents and sisters, you may go to IAMFAYT tab on this blog.
- If you would like to offer a prayer for a friend or loved one from a Christian perspective, you may want to use one of the 400 prayers from my book that was generated from my years as a pastor. It is called PRAYERS TO SHARE tab on this blog. For Special Time of Celebration or Need. The prayers (and some letters) are yours for the taking.
O Source of All Life,
Out of your Passion, you create all that is and sustain it by your good will. We are bounded by the mortal limits of time and space and yet we live and move and have our being in you—who exists and rules in the eternal NOW beyond all boundaries. And so we are free.
You free us from our bruised egos and closely-monitored scorecards and you bend us and shape us until once again, like trusting children, we learn to accept whatever comes our way and exult in our creaturely life with our whole being, joining you in your contagious, eternal joie.
Help us to remember that with our first breath, all living creatures are heading towards death, an ending awaiting each life form from mites and germs to bristle cone pines trees to bristle-hearted humans. Help us, O God, that we may not fear it when it comes calling and accept it as the final part of life on earth.
O may it be that
we taste and see. . .
we hear and smell. . .
we feel and know . . .
and experience our life to its fullest.
O may it be that
we come to learn that
you are Home
and you are all we need.
Amen.
Dying for Dummies #1
Here is a Jewish Mourning Prayer, “Sink, So As to Rise”
Leon Wieseltier, Kaddish
There are circumstances that must shatter you;
and if you are not shattered, then you have not understood your circumstances.
In such circumstances, it is failure for your heart not to break.
And it is pointless to put up a fight, for a fight will blind you to the opportunity that has been presented by your misfortune.
Do you wish to persevere pridefully in the old life?
Of course you do; the old life was a good life.
But it is no longer available to you.
It has been carried away, irreversibly.
So there is only one thing to be done.
Transformation must be met by transformation.
Where there was the old life, let there be the new life.
Do no persevere.
Dignify the shock.
Sink, so as to rise.
CHABAD.org—Jewish practices
Just when His great masterpiece of heaven and earth was finally up and running, G_d realized there was something missing: The autograph.
Without an autograph, the creatures of this world might take life, beauty, pleasure and all the other amenities of existence for granted. They could fail to take care of the home made for them, even turning reckless and destructive.
So He left the autograph up to us. Our job is to make it recognizable that this is actually the ultimate piece of art, crafted by the ultimate of all artists, the Master Designer/Architect/Engineer of all things.
In Hebrew, we call this a Kiddush Hashem—roughly translated as Sanctification of The Name (English is kind of clumsy with these things). How do we make a Kiddush Hashem? Well, as you may have guessed from the sound of the words, making "kiddush" on wine on Friday night as Shabbat enters is one great way. So is any act that demonstrates a higher purpose and meaning to life, whether that be a public prayer, an act of charity or just everyday acting like a mentsch.
Of the prayer-forms of Kiddush Hashem, the most extreme example is the Kaddish1. No other words we say in all our prayers are attributed the same level of sanctity.2
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