Tuesday, May 29, 2007

More Puzzle Pieces

Tuesday this week brought two more appointments concerned with handling business related to Dad's passing, one of which was an impromptu visit to the cancer treatment center where Dad received his series of radiation treatments for the brain metastases. Mom had told me that it was the doctor there that Dad had liked so much, and it was also there that Mom and Dad seemed to get the most optimistic assessment of his illness. The doctor was out, but we had a nice conversation with the Nurse Manager, Mr. Cook. These are the nuggets we picked up to add to our detective work about Dad's cancer and its treatment:
  • Again, as with other care providers, his frank assessment was that Dad's overall prognosis was very grim. He confirmed the picture that is now so clear to us that lung cancer is simply super-bad news, whether large or small cell (of which Dad had indications of both). He told us lung cancer is the major killer in oncology, and he agreed with our family doctor's statement that prognosis for lung cancer patients really hasn't improved in the last 60 years. He did mention that there are a couple new drugs out there, but given the nature of Dad's particular form of lung cancer, he would not have qualified for any of them. The bottom line is that with lung cancer, even with the best and most timely treatments, there is little that really can be done. The prognosis - regardless of treatment - can only be affected one way or another by a handful of months (especially in Dad's case since his had spread), and with chemo and Dad's various health problems, they would likely have been poor quality months. It just isn't the cancer to have. (All this news was comforting because we don't have to feel much remorse over some of our decisions during treatment; there doesn't have to be wondering if Dad would have made it or lived dramatically longer had we sought a second opinion or been treated elsewhere. However, the concern still lingers that - if this was really the outlook regardless of treatment - why were we not told this explicitly early along in the process? It was only a week before Dad died that we were really told how serious it was by anybody. More clues to this below.)
  • In our conversation with Mr. Cook, the problem of what I'll call "silos of treatment" seemed to emerge. Warren was charged with handling the brain tumors (we had the choice of Warren, Erie, or Meadville, and Warren was closest and came recommended). They performed Dad's series of 10 radiation treatments. However, while Warren handled that, they had no knowledge of or control over his lung tumor and the biopsy process for that (which was the part that took so long and seemed so leisurely). Consequently, I think there was a disconnect in service and in approach between Warren and Titusville, and I think we would have greatly benefited from having all of his treatment in one place. Warren was indeed optimistic about his treatment, but for them, that only referred to the brain part. Also, he said that their optimism was not curative optimism (which I am not sure we knew), but it was optimism that the treatment would do what it was designed to do, which was to provide palliative care, get the brain tumors under control, and provide some symptom relief. At bottom, I think they did their part and did it well (Dad completed his series of 10 radiation treatments at Warren almost a full month before Titusville even had biopsy results on the lung tumor for us), but they just simply were out of the loop concerning his other assessments and treatment. Given the urgency they displayed with their portion of Dad's treatment, I think I would have felt better if they also had charge of his lung assessment and treatment. Titusville really seemed to drag their feet.
  • Mr. Cook also seemed to generally mirror our family doctor's concept of only giving information and bad news in small, manageable doses. Similar to our doctor, he said that their approach is to always be as optimistic as possible, and they'll never just come out and say that you've got lung cancer and are in for a shitty time. He said it is easy to overwhelm people both with bad news and too much information/education, so they err on the side of small doses and optimism. If I am really reporting this correctly, it still seems to me that patients are done an extreme disservice withi this sort of approach. Full disclosure and forthrightness seem to be to be most imperative. At the least, doctors should talk to their patients early in the process to find out from them how much information and bad news they want at a time (or at all). Being optimistic is one thing, but keeping patients in the dark or giving them a false sense of the seriousness of their own illness is quite another.
  • Lastly, he said that Titusville in general is under served in oncology; if I remember him correctly, they don't have any full-time oncology staff, whereas Warren has several oncologists and pathologists and the equipment to treat. Thus, it is likely that another center more suited for oncology work would have been more aggressive with treatment. However, without knowing the "behind the scenes" of Titusville's treatment of Dad, it is hard to say why it seemed that feet were dragging (or if they were actually dragging at all). It could be, he said, that things really did move as quickly as they could have from Titusville's end. And at bottom, given Dad's messy and aggressive form of cancer, he comforted us by saying that the final outcome would not have changed even with more aggressive treatment.
In the end, I feel some better that Dad received what was an appropriate but not excessive amount of treatment, which was in keeping with his wishes of no chemo and no cutting. He got a rather noninvasive series of radiation treatments and was spared chemo altogether. And it sounds like - with the combo of his aggressive and erratic cancer that had already spread and his complicating health problems - chemo might not have done much and would have likely made him very sick. Still, Dad told me a few months ago that he wanted to get better so bad, and he showed after his oncology appointment that he was willing to try chemo, so maybe he wasn't as "hands off" regarding treatment as he initially seemed. I think he really was at such a content and happy place in life, and so it grieved him to have that interrupted. He wanted nothing more than to go back to woodworking in his shop, and it grieves me now to think of how good Dad was doing overall - health, happiness, usefulness - when this disease jumped in and took him from us and his own life.

My other thought is that - the more I find out - the more I am still unhappy with the way that information was communicated (or not communicated) to the family about the nature of Dad's cancer. None of the explanations about "not taking away hope" or "being optimistic" have convinced me that it was right or ethical - in my eyes - to withhold (whether intentionally or because we never asked the "right" questions) certain information from us or not give us the option of having full disclosure had we wanted it.

Sunday, May 27, 2007

Zombie

I still find myself in a zombie-like state of incredulity and incomprehension that Dad is really gone. I still can't quite believe or comprehend it. Maybe I am even in some sort of denial. I just can't fit it in my head. He can't be gone. I don't know that I'll ever fully understand the finality of this.

And I have been so sluggish and tired... sleeping more, unmotivated. And I have been dreaming about Dad. Actually, it's mostly been dreaming around Dad in the sense that it has been about things like planning now that he's gone. I guess I am carrying some anxiety about that.

Well... there was one disturbing dream from last night. I dreamed that Dad was alive... and not just alive like he once was months ago, but I dreamed that was dead and in some apartment and that we had to move him. Beth and I were fighting over whether to move him in a sitting or lying down position when he got up and was suddenly alive. Maybe I AM in denial.

I've also noticed that I am super-paranoid about Mom's health now. I've been told by those who have had cancer go into remission that it is always so incredibly unnerving after that because every pain isn't just a pain, but the possibility that growth has begun again. I've felt like that with Mom, worrying with every cough and headache that she is sick and won't get better. She's been feeling under the weather, and so I've moved from caring for Dad to Mom. But I worry what happens when I leave; there won't be anyone to care for her anymore. Beth is close, but she isn't living here. What if Mom falls or has another stroke? When Mom naps, I periodically check on her to make sure her chest still rises and falls. Last night, when she was really sick, I had these frightening premonitions of losing her too quickly after Dad. She needs to live 20 or 25 more good years. And I worry about her being alone once I leave. Tonight, I was on my computer while Mom did some dishes, and I heard her crying. She said she was feeling sorry for herself now that Dad is gone. I know she'll have those times, and she should grieve... but I worry about her being alone. I feel like I'll want to call and visit more often now.... I'll be even more protective. I know she is a busy, involved woman... but she has never lived alone - 30 years with her Mom and then 30 with Dad. Soon, she'll be alone...

I haven't been crying, but sometimes I feel like I would if I just slowed down enough to think. I have those thoughts if this being unfair... of it all happening too damn fast. I was just with Dad. I have pictures from Christmas and my visit in March and from 2 weeks ago. We went driving and shopping and walking. I helped him eat and walk. He can't be gone. I sometimes feel like I am writing about someone else... someone else's family. My Dad can't be dead. Dead. Dad. He's really gone forever. There is just no way to make it real. Maybe there never will be.

Second Guessing

One of the primary things I have struggled with since Dad's death is the degree of transparency (or lack thereof) between us and the various doctors involved in Dad's testing and treatment. Throughout Dad's cancer, I got all my information from him and Mom since I was not home for his many appointments, and all word from them was guarded optimism. For March and April, what I knew (from them) was that he had a tumor in his lung and multiple tumors in his brain (they hesitated to call it cancer officially until the biopsy results came back). For treatment, they were doing targeted radiation for the brain tumors, and we were waiting on biopsy results from the lung tumor before proceeding with treatment for it. From what I understood, everything seemed under control, and there certainly seemed to be no hurry on the part of the doctors since tests and then follow-up appointments kept getting pushed back. Even with the biopsy results themselves (which seemed to be the linchpin of the whole process), first we were supposed to know the next day, then after the weekend, which then became a week after that. Clearly, someone wasn't in a hurry. Looking back, maybe I should have questioned more from afar, but I trusted that the doctors were giving my parents the information they needed and being upfront with them, and I trusted the information that my parents were relaying to me.

Given this framing, imagine my surprise when my sister pulled me aside the last weekend in April to tell me that Dad's condition was serious and that he didn't have much time left. I mulled that over during the weekend, and then I began my own round of calling to doctors and nurses the following week to see what I could find out. While there were some differences of opinion on minor points, the picture that emerged after talking with two doctors and two nurses was that Dad was terminal, the prognosis was grim, and in the opinion of one doctor, he "only had a few weeks of lucidity left."

So the question plagued me, why didn't we - the family - know this, especially when it seemed common knowledge across 4 different care givers?

Of course, I made plans to come home right away. But even in that, Mom and Dad did not know his true prognosis, so I felt like I was being deceptive if I came home without being able to tell them why I was suddenly uprooting my life to be home indefinitely. Why were they not told? Why didn't I know, and why did I have to do such digging just to find out how sick my Dad really was?

I came home under the guise of being with my family on May 8, my Dad's appointment with the oncologist, but I already knew what the news would be. My folks didn't. I pulled my Mom aside immediately before the appointment to try and set the stage for her so that she'd be in a mind to hear the doctor, but I did not talk with Dad. He went into that appointment saying that he would find out the good news or the bad news, even though everyone involved knew that there would be no good news.

Before the appointment, it had taken some doing to convince Dad to even consider chemo, and in that appointment, the doctor said that Dad was too far gone for chemo and that we should consider hospice. He told Dad he had a few months. I think Dad was shocked... my heart sinks even now because I can picture him, laying on the hospital bed, craning his head up toward the doctor when he said "a few months." Dad knew at that point he wouldn't get better, and it showed on his face. He had not been prepared for that news at all. Even in the car on the way home, he asked me when we started the chemo. "Dad," I said, "there won't be any chemo. There is nothing more for them to do." Dad clearly wasn't in a place going in to that appointment to hear that news. He died one week later.

I know that the doctors really did think that Dad would live more than that one week, and if he really had lingered for a few months as expected, maybe I would feel differently than I do since I would have had those final months by his side. But since he only lasted one week after his official diagnosis, there was quite a bit of shock involved with his death, and I think that was compounded by the two months of wool over my eyes. After two months of thinking he might just be okay, it is a shock to say the least to lose him in a matter of two weeks.

I have struggled with this apparent decision by the doctors and nurses not to tell my folks how Dad was really doing until so close to the end. Since Dad died, I have been talking with family and our family doctor to make sure I understand why things were as they were. Mom and Dad are both not the most objective souls, so I wondered of the doctors really did tell them the true truth and they couldn't receive it. From my digging, while I think some comments here and there from the doctors tried to convey that Dad was sick and that it was serious, I failed to find evidence that they were ever explicitly told exactly what Dad was facing.

I talked with our family doctor about this very thing; I asked him how it was that Dad and Mom went into the appointment with the oncologist on May 8 still thinking that Dad might get better when everyone knew he wouldn't. Our doctor replied with a long speech about how his philosophy as a doctor is not to take away a patient’s hope; he said he will never be the “prophet of doom.” Part of his reasoning, it seemed to me, was that cancer biology is an inexact science and that people often outlast predictions, so he does not want to pre-emptively tell people worst case scenarios. While I understand that impulse, it still seems to me that he has some duty - at the least - to ask my parents at the beginning of all of this whether or not they want him to be blunt and forthright or not; it is not his decision just to keep them in the dark because his prerogative is not the steal hope. And what's more, he can always qualify his news in any way that makes him feel comfortable, including saying that he is uncomfortable giving time tables.

From his point of view, he thinks he did his duty by always making an intentional effort – in his mind – to ask Mom and Dad each time they met if they had questions, by which he meant things like “How long do I have?” or “Will I die from this?” Mom and Dad never asked, so he never told. His approach, it seemed to me, is to only tell when asked directly. In fairness, he told me how serious Dad was without mincing words when I asked, but the problem is, it took me asking. While I believe that he would have told Mom or Dad the same had they asked, I feel like the onus for asking just the right question shouldn't be on the patient; it is the doctor whose duty it is to fully disclose or at least ask the patient if they want full disclosure.

Underlying all of this – both for better and worse – was our doctor's Mom’s death in 6 weeks from this same cancer. Regarding the “prophet of doom” concern he had, he talked about how – at Cleveland – the doctor was very blunt with his Mom, just saying that she had a few weeks and had better go home and get her affairs in order. He said she cried for 2 days, and he was resolved not to be that kind of physician.

In one sense, Dad's illness may have progressed the same regardless, and from that angle, I can see the point of saying, why not allow him to be hopeful most of that time rather than discouraged and defeated. Two months is two months, so why not make them good ones, even if ignorant ones. And I still think the course of treatment Dad got was most fitting with what was reasonable and what was within the scope of his original wishes. And I know that no amount of detective work now will bring Dad back. Still, I am bothered with how in the dark we all were for so long, and had I known how serious this was back in March or early April, maybe I would have come home sooner and had more than a week with him at the end. As it was, the week that we shared was sweet, but Dad was not physically himself, thus preventing us from many of the things that I had hoped to do with him.

I am still not sure what exactly to do with my discontent. Nothing will bring Dad back, and nothing will get me more time with him. Sometimes I feel like I should have asked more questions and been more engaged in the process. I am ashamed now how little I Googled "cancer." I think like my folks, I trusted that the multiple doctors who worked on Dad would do their best and tell us what we needed to know. In the end, maybe nothing would have extended his life past those two months, and maybe it's better that he had hope for most of that time. I guess I just wish there weren't such second guesses.

Op-Ed by Cal Thomas

Here's the full text of what I found to be an interesting op-ed piece by syndicated conservative columnist Cal Thomas. I'll post a few of my own thoughts at the end.

Closing one door, opening another
May 4, 2007

One of the major players in what came to be known as the "Religious Right" in the 1980s has shut its doors. The Center for Reclaiming America, based in Ft. Lauderdale, part of Dr. D. James Kennedy's Coral Ridge Ministries, has decided to close. It will also shut its Washington, D.C., office known as the Center for Christian Statesmanship.

Kennedy, who is 76 years old and recovering from a heart attack he suffered in December, is one of the best educated and most compelling of all the cultural conservatives who sought to use the political process to reverse the "moral slide" in America. Most of Kennedy's televised messages in recent years have strayed from traditional preaching and focused primarily on politics and social issues.

Brian Fisher, executive vice president of Coral Ridge Ministries, told the Miami Herald, "We believe that by streamlining the operations we will be able to return to our core focus." One hopes that will be preaching the unadulterated Gospel of Jesus Christ, unencumbered by the allures of the political kingdoms of this world, because that is where the greatest power lies to transform lives and ultimately nations. It does not lie in the Republican Party, with which Kennedy's organization was almost exclusively associated.

Politics is about compromise. The message of the church is about Truth. One has to look no further than the Al Sharptons and Jesse Jacksons - who long ago gave up speaking of another kingdom and another King (if they ever did) in favor of faith in the Democratic Party - to see how quickly the church and its primary message can be blurred when it enters into a shotgun marriage with politics. Jim Naugle, the mayor of Ft. Lauderdale, told the Herald that the last election persuaded candidates to package themselves "in the middle, rather than to the right."

Nearly 30 years after religious conservatives decided to re-enter the political arena - after abandoning it as "dirty" and leading to compromise - what do they have to show for it? The country remains sharply divided and the reconciling message they used to preach has been obscured by the crass pursuit of the golden ring of political power. In the end, they got neither the power, nor the Kingdom; only the glory and even that is now fading, as these older leaders pass from the scene.

This is not to say there is no role for conservative Christians in the civic life of their nation. There is. But Christians must first understand that the issues they most care about - abortion, same-sex marriage and cultural rot - are not caused by bad politics, but are matters of the heart and soul. Some evangelicals wish to broaden the political agenda beyond these issues to poverty, social justice and the environment. Politics can never completely cure the ills of any of these, but the message Christians bring about salvation and redemption can. Besides, they can never "convert" people to their point of view.

Too many conservative Christians have focused on the "seen" rather than the "unseen," thinking appearances at the White House, or on "Meet the Press," is evidence that they are making a difference. And too much attention has been paid to individual personalities, rather than to the One these preachers had originally been called to exalt.

Nothing in the Bible commands believers to reform or redeem society through government and politics alone, or even mainly. Neither is there any expectation that non-Christians will be converted to the Christian point of view, which can vary on some topics, through politics.

Corwin Smidt, executive director of the Henry Institute for the Study of Christianity and Politics at Calvin College in Grand Rapids, Mich., told the Herald that evangelical groups that are built around a single charismatic leader often struggle when the leader is gone. "These televangelists are able to generate a fair amount of money," he said, "but in terms of their institutional longevity, it's really at risk."

To paraphrase a verse familiar to most Christians, what shall it profit a man if he gains the White House, but loses his own soul?

Christians are also fond of saying God never closes one door without opening another door. The "door" of the Center for Reclaiming America has closed. The new doors can produce a more effective politics, if what's on the other side is based on a message that has less to do with partisanship and more to do with the One who transcends all politics and Who lends His power only to those who will use it as He instructed.

Back to Bob:
  • First of all, I am really tempted to cheer out loud with Kennedy closing some of his doors. My Mom has been a devout follower of this guy for years, and in fact, just a couple hours ago I was forced (by the TV being in the same room as my computer) to watch Kennedy's Memorial Day sermon. Of course, it had little to do with Jesus as found in the Gospels or Christianity, and it had everything to do with America as a Christian nation and how everybody and their brother wants you not to be able to be a Christian in this country anymore. I have problems with a sermon that quotes John Jay and Patrick Henry more than Jesus. I have a million other objections to what he said in my head, but those aren't for now. But anytime a guy like that seems to lose even the slightest ground, I rejoice. Unfortunately, I am nowhere near the place of proclaiming any death knells of the Religious Right, even thought my boss has been so bold as to do so. In time, I can only hope...
  • Thank goodness Cal recognizes that salvation does not lie with the Republican Party. If only some others of his ilk would come to the same realization. I find it so comical and frustrating (more frustrating given what's at stake) to watch many conservative Christians try to fit square pegs into round holes as they sort through all the Republicans running in '08. It's no secret that I am partial to many of the Democratic candidates, but it bugs me that - for many Christians - looking across the aisle to the Dems for a Christian candidate is anathema, akin to voting for satan or something. Instead of trying to see if Barack or Hillary or Edwards might actually have something good and Christian to say, more time is spent forwarding emails that Barack is a closet radical Muslim because he spent a couple elementary school years in Indonesia. I know lots has been written about it, but the co-option of the Republican Party by the Religious Right over the last 30 years has got to be one of the most diabolical and successful political maneuvers ever since it has us at a place where the evangelical base is so loyal to the GOP instead of loyal to the Gospel of Jesus Christ.
  • Cal makes some interesting critiques of the wisdom of Christians getting involved in politics at all, something I certainly think a lot about given my present employer. In the end, I still see a place for faith in politics (Jim's "personal but never private"), but I guess I'd like to think we have an agenda that holds more promise (and is more biblical). Still, some of his assessments of the dangers are as equally true for the left as they have been for the right, and let's hope that in 30 years - if the "Religious Left" can be as successful in wielding influence as the Right has been - we'll have more to show for it than they do. It is easy in a town like Washington to equate access with power. It is also easy to let access blunt one's prophetic voice for fear of losing that very access. There are many pitfalls along this tightrope. And many times, I wonder if a truly Christian agenda - one that is guided by the Beatitudes and Jesus as found in the Gospels - will ALWAYS be marginal if articulated without apology.
  • However, after Cal's wise observations about faith and politics, he then makes some classic conservative blunders in my mind by picking the wrong core issues (the usual suspect of abortion, gay marriage and cultural rot) and then by only offering individual, moral explanations for our societal problems (omitting structural and institutional causes). Come on, Cal... a bunch of "good" people will not a good society make...

The Evolution of Evolution

After weeks of blogging about my Dad and our family's odyssey with his cancer, I am going to try and post a couple blogs on topics "other" (although I do have some Dad-related thoughts to also post, which hopefully I'll get to this evening). First up... evolution.

My thoughts were prompted by Newsweek’s cover story back on March 19 – “The Evolution Revolution.” The story details how new discoveries about the brain and DNA are rewriting the evolutionary family tree. No longer reliant solely on bones and arrowheads, evolutionary science is now led by molecular biology and neuroscience in recreating just exactly where we’ve come from.

I suppose this is an innocuous enough article for most, but that “most” doesn’t include America’s conservative Christian subculture, in which evolution is still one of the great modern evils. Not just a scientific theory, evolution is symbolic of the conspiracy on behalf of liberal, godless scientists (and those godless folks who support them) to push any vestige of God from the public square, or in this case, our public school classrooms. While conservatives seem to have conceded that getting evolution out of our public schools altogether is a lost cause, brave foot soldiers – in Scopes trial-like fashion – have now adopted the tact of gussying up biblical creationism in scientific garb as “intelligent design” and taking it to the courts in hopes of at least winning equal billing with evolution in public school science classrooms.

It may seem ridiculous at best that some folks still – in 2007 – so vehemently protest the theory of evolution as a scientific explanation of origins, instead preferring a strict literal reading of a religious account written thousands of years ago. But as far-fetched as it seems to some, it is a world I know well since it is the subculture in which I grew up. In fact, as a ninth grader, I chose to fulfill my assignment for a persuasive speech by convincingly arguing in favor of a literal, 6-day biblical creation story instead of evolution.

But times change. Four years as an anthropology major (notably at an evangelical Christian college) brought me around to see not only the good science behind the theory of evolution, but its compatibility with my Christian faith. And one thing about evolutionary theory that surprised me when I first learned it in any detail is how theoretical, speculative, and malleable it can be. Far from the airtight and changeless doctrine perpetrated on an unassuming public by godless scientists that I understood it to be in my youth, the evolutionary theory I saw as a collegian was an idea under constant scrutiny and revision in the face of new science and “better” (or at least different) ideas. Part science and part art, I saw it as it was – not the product of smoke-filled rooms of Christian-hating scientists, but as a living, dynamic idea, the best cumulative attempt of thousands of scientists over a century and a half to piece together – using the best science available – an infinitely complex story that has been running for millions of years. And while my conservative upbringing taught me to see any “change” in evolutionary theory as weakness, an up close look under the hood revealed that – as good science should be – evolutionary theory, at least on the anthropological end, was ever-changing.

So stumbling upon Newsweek’s piece, I wanted to again shout from the rooftops to all my Christian brothers and sisters that scientists who study this stuff are not out to get us or pull the wool over our eyes. They are piecing it together, one discovery at a time. There is no smoke-filled room or person behind the curtain.

Most of the time, when evolution is invoked by conservative Christians, it is done so in a straw man fashion to incite fear, pat each other on the back, or raise some cash. While it may take a backseat to frontline issues like abortion and gay marriage, evolution can still be counted upon to drum up some fear and outrage among conservatives in a political or financial pinch. In an ideal world, I’d love for Christians to get out from behind their anti-intellectual straw men and actually take some time to grapple with the real science of evolution instead of trying to pseudo-science-ify their own ideas. I did, and once I got past my own biases and was sensitively guided into the science (by explicitly Christian scientists at an explicitly Christian institution), I no longer had to be afraid of this supposed leviathan. And even if one comes out the other end as an “unbeliever,” we need to get past the rhetoric that “evolutionists” are some unified front bent upon marginalizing Christianity. I am far too tired of Christians being dubbed (often rightfully so) anti-scientific because we buy into the fear-mongering and one-sided rhetoric of the loudest among us.

Tuesday, May 22, 2007

One Week Ago... That Fateful Night

Dad's cremains arrived at the funeral home today. We have yet to pick them up. There are still many reminders of Dad around the apartment - some of the food he picked out the last time we went shopping that he thought he'd eat, his pants still hanging on the bed post, mail still bearing his name.

Mom and I went to our family doctor today since my Mom is the latest of us under the weather, but we spent much of the time talking about Dad. The doctor got Dad's file to refer to a few things, and I noticed that "Deceased - 5/16/07" was written across the front of it.

As this night is the week anniversary of Dad's last night, I am recounting his final hours for the first time on my blog. Some of this is potentially disturbing, so please proceed with caution. I didn't plan on recounting my Dad's last hours in my blog today, but the week anniversary got me thinking back to that fateful night. for those who want to read on, here it is:

It was a week ago today - in the morning - that my Dad had some sort of stroke-like brain event and seemed to slip away from us. Exactly a week ago to the minute (11:00ish), we were a family of four, sitting together in my folks' living room, my Dad's first evening in his newly delivered hospital bed. The Bulls-Pistons' playoff game was on in the background, and things seemed normal. Dad had even perked up some, giving us a glimmer of hope that his vegetative state that day was not going to be permanent. Beth left for home about now without alarm, and Mom found she could fall asleep without problem.

But I couldn't. About midnight, I headed to bed, that night sleeping in my parents' room since Dad was now in the living room and Mom had elected to sleep on the couch to be closer to him. Before bed, I decided to read a small booklet on "the dying experience" that our hospice nurse had given me that day. I am not sure why I read it that night; I was tired, and I could have always procrastinated. And what's more, why did hospice even think to give it to me that day? But I had it, and I read it.

It so frightened me. It talked about the symptoms people experience at different stages of dying - a few months before death, a few weeks, a few hours, and a few minutes. It was Dad. Even some of the immanent symptoms - it was Dad. I was afraid. I couldn't sleep because I was afraid of losing him when I was not watching. I agonized because I knew I couldn't stay awake for weeks on end, but I knew I couldn't sleep. I worried that he might even go that night. It wasn't the first eerie premonition of the evening.

So I turned on a dim light in my parents' room and started journaling , in between pacing around the apartment, making periodic stops by Dad's bed. That went on for hours. I wrote that it was my dark night of the soul. I struggled. I wrote. I paced.

And then things began to happen. Around 3am, Dad seemed to be struggling a bit more with his breathing. His breathing had been congested for weeks, but now it became a bit more labored and even more congested. He seemed to breathe a few labored breaths, then shudder or squirm. This pattern continued, and he seemed in distressed.

I woke my Mom and sat with him, holding his hand, stroking his arm, and talking with him. And this premonition came upon me that the end was close. I had always wanted to take some pictures of Dad's hands and feet, and I suddenly felt the urgency to take them - now. I got out my camera and began shooting; I took many pictures, ones I have yet to look at. There were a couple a me and him, one of him and Mom, and many, many of my hands, his hands, our hands together.

By 4am, he was laboring rather intensely, and for the first time that night, I tried concertedly to wake him. He was unresponsive, clearly now retreated into his own world. I wondered where he was during those minutes. He seemed very disturbed to me, and I prayed that he was not having bad dreams or any pain. I felt concerned enough to call hospice, and she suggested I administer liquid morphine, which Dad had not needed to that point because he had not had pain. However, since morphine is also supposed to calm down labored breathing, I gave him some. I waited a few minutes, then gave him some more. While there was no change, it also seemed like he was stable, so Mom laid back down on the couch, and after sitting with him for a spell longer, I sat at my computer to do some brief journaling. It was 4:30am.

After writing just a paragraph or so, I noticed something in Dad's mouth. I got up and went to him, and there was white foam coming out of his mouth. I woke Mom, and we grabbed paper towels to catch it. It kept coming. Panicked, I called hospice, telling them that they needed to come because I thought we were losing Dad. Then I called Beth and told her to come as soon as she could. Mom and I attended him, but we could not get him out of his unresponsive trance and we could not stop the froth running from his mouth. I told Mom to help me sit him up, so we got on either side of him, hooked our arms at the elbow under his armpit and hoisted him up. The foam kept coming, and we grew more and more panicked.

Then, without warning, Dad sat up, partially opened his eyes, and let out a definitive breath, spitting white foam from his mouth in the process. It was so sudden that I jumped back; it scared me. Then he sat back and was gone. I knew it right away, and I told Mom, "He's gone." I grabbed his shoulders and yelled for him, and we both were hysterical with tears. We were so unsure what to do. The color began to immediately drain from his face; the surfaced blood veins in his nose disappeared, and I specifically remember his ears changing color, like those hyper-color shirts. Mom and I cried and cried. We paced and held him. 4:41am.

There were still a few phantom breaths and movements in him, which startled us and also gave - for split seconds - hope that maybe he wasn't really gone. But we knew.

We crossed his arms and pulled the sheet and blanket up over his chest so he looked more comfortable. He was gone.

Beth arrived, unfortunately, too late. The three of us sat with him, waiting for hospice to arrive.

She did, and she contacted the funeral home and then began washing the body. She offered us the chance to leave, but we didn't want to. We stayed with Dad, watching her wash and then dress him. Since Dad was a big guy, she asked for my help to roll him, which I did. I helped get Dad ready.

The funeral director eventually came, with those infamous gurnies and black body bags that I've only seen in gangster movies. They moved Dad over and zipped him up. And like that, he was gone.

Those were Dad's final few hours, all of them with me by his side. In the end, I guess I didn't have to stay up for weeks on end, worrying that I'd miss the mystical, inexplicable moment Dad passed from this life to whatever is beyond. In so many ways, Dad was looking out for us in his death, even though we would never be ready to see him go. Mom was always fearful that he would die in their bed, and so he waited for his first night not sleeping there. Mom was afraid she'd be alone, so he waited until I was by his side as well. And I wanted to be there, and maybe he knew I was at his side and that it was okay to let go. And he let me take those final pictures, that I'll look at someday and relive my dark night of the soul and those final hours with Dad.

In a handful of hours, it will have been one week since I watched Dad literally breathe his last as he passed from us. My tears have become much further between now, and I've moved into a simple incredulity that he is really gone. There is some sort of mental disconnect as I look at his pictures; I cannot quite wrap my mind around his absence. Even just now, I look up from my computer at his framed picture, and it is like my mind and heart go blank. I have no ability to comprehend what it means that Dad - the person in that picture - is no more, and that that picture is all we have left of him. Pictures, memories, and cremains.

Sunday, May 20, 2007

Pictures from Dad's Memorial Service





My Eulogy for Dad

Mom and I are now at home after our weekend of remembrances for my Dad. We had calling hours and a family dinner yesterday, and Dad's memorial service and reception today. We all feel good about how things went, and we think everything was in a form and spirit that honored Dad.

As for me personally, it seems that my grief has moved into a new stage. After my first few days of grueling emotions and images, the last few have been of more measured, introspective moments of contemplation and inner solitude. I think I will continue to blog; while the journey alongside my Dad is now over, my journey into life without him now begins.

Here is the eulogy I wrote for Dad, delivered this afternoon by my childhood friend, Jeremy Andrews:

Eulogy for Gary Donald Francis
By his loving son, Robert Donald

On March 20, 2007, upon hearing the news that my Dad had cancer, I started writing his eulogy. I am still not sure why I began it that day. At the time, we knew little about his particular cancer, and we had no reason to believe it was not treatable. But I began writing. Although Dad had cheated death so many times before – from accidentally catching his shirt in a pipe threader to being electrocuted to his many health problems over the years – maybe somewhere deep within me I sensed that something was different this time. A word like “cancer” – with all its gravity and seriousness – can make one both introspective and retrospective. So on that day, I began thinking more intentionally about my Dad and how I could best honor him whenever the time came. That time came much too soon and unexpectedly for any of us, but I pray that my words will do justice to the Dad I love and miss so much.

In times like these, it is always tempting to see the past through rose-colored glasses. Everyone becomes a hero and a saint. We forget that – as one of my favorite authors, Alexander Solzhenitsyn, wrote – “the line dividing good and evil cuts through the heart of every human being.” Or as Martin Luther, Father of the Reformation, put it, we are all – mysteriously – sinners and saints at the same time. Even our Holy Book – says another of my favorite writers, Randall Balmer – is populated with scoundrels. Whatever else you care to say about folks like Jacob and Paul and David and Peter, the Bible presents them to us in all their messy humanity, three-dimensional beings who were quintessentially human, tangled tapestries of virtues and vices. So it is with my Dad.

Most readily apparent about Dad was that he was so well liked by so many. He was always the man about town, from morning coffee with the regulars to chatting with total strangers for hours. He could so quickly endear himself to people with his jokes and stories, like the way he would regularly entertain the ladies at the Tidioute Towers. Even his radiology nurse, when I was making some calls a few weeks ago, recognized Dad’s name instantly and told me that “he was such a character” and that “he always ate all their cookies.” That definitely sounds like Dad to me.

He was also always so quick to lend a helping hand, often not letting his left hand know what his right was doing. So many times in the last few days, people have approached me and said that Dad helped them with this or that, often going the extra mile to help or doing something extra thoughtful and special. And what’s more, I think often no one knew about it but him and them.

Dad also always looked out so much for Mom, Beth and me. He was so devoted to us kids getting good educations so that we wouldn’t have to work hard with our hands like he had to. Each year, he made sure Beth and I had the right teachers and all the books and supplies we needed, and I know it grieved him that he couldn’t pay for our college educations. And in recent months, he was so concerned that Mom would be okay once he was gone, so he wrote his will and made his funeral arrangements and even insisted she start pumping her own gas!

I have many other fond memories. I remember Dad talking with me about He-Man or some silly thing to distract me from the pain of getting a couple stitches in my arm as a boy. I remember doing my major 9th grade science project with Dad on wastewater treatment since he worked at Pleasantville’s wastewater facility in those days. (And I never let him forget that I had the chance to do my project with a really cute girl about the rainforest, but instead, I chose Dad and wastewater treatment. But I always knew I made the right choice.) And I remember many days of hunting together, including him spending a couple days helping me track my first deer, which I had only managed to wound before it wove its way all over northwestern Pennsylvania. And there were also all those years of his involvement with me in Boy Scouts, from his leading us on a trip to Canada to his supervision of my Eagle Scout project.

A lot of my memories of Dad revolve around work. As a boy, I accompanied him on his rounds on John Cubbon’s oil leases. He let me do my first driving on those lease roads, advancing the truck a hundred feet at a time as we cut back overgrown brush. Dad also had me climb up onto the large, rusty oil holding tanks to check the oil level using the longest ruler I had ever seen. And every work day, Dad loved to take a mid-morning break for a small snack and chocolate milk – mixed half and half with white – straight from the carton. He gave me guidance when I worked construction for a summer in college, and he did the same when I redid my room at our old house. And he made my lunch and drove me to work every morning the summer I worked at the Titusville Dairy. I never quite took after him and his jack-of-all-trades nature, but I so very much respected his many skills and hats, from electrician to contractor to mechanic to woodworker.

Dad was also quite a dreamer. He always played the lottery, hoping to win so that he could help Beth and me with our school debts and finally get Mom and him on solid financial ground. In fact, he bought two lottery tickets at Pat’s the day before he died, which I checked the morning after he left us. Unfortunately, still no jackpot, but I am keeping those tickets.

But maybe the thing I loved most about my Dad was his hands. To me, his hands represented so much about him. He worked hard with his hands all his life, and they were thick-skinned and strong while still sensitive and gentle. It was with those hands that he taught me a solid work ethic, the value of a hard day’s work with sweat on your brow, and the respect of working with one’s hands to make a living. Those hands also assembled my toys, bound up my wounds, and clapped for my accomplishments, and they were always good for a firm handshake whenever I left home for destinations unknown.

But despite all these good memories and traits, I also look at my Dad with very sympathetic eyes, because he was also a man of sorrows and insecurities. His life had its seemingly unfair share of disappointments and traumas – a divorce and estrangement from two daughters, three years of combat military service about which he rarely talked, constant financial pressures and stresses, and business plans unfulfilled. In many ways, I think his life didn’t unfold quite as he had planned, and I think that was especially hard for him.

And despite his friendliness and out-going nature, deep down he was an insecure and highly sensitive man. He always felt inferior to others, including his wife and children, because he never earned a college degree. While we always saw him as smart and well-read, I am not sure he ever gave himself such credit. And I think that sometimes, his willingness to help out so many people came from a simple desire to be liked and affirmed, to be valuable and useful. He was those very things, but again, I’m not sure he ever arrived at the kind of self-confidence I wish he had had. And despite his “macho man” exterior, his feelings were easily and often hurt, but one would be hard-pressed to know since he most often internalized it, thus feeding his own insecurities and self-doubt.

Talking with Dad in March, just after his diagnosis, he told me that he feels that he’d made some amends in the last 20 years for mistakes earlier in life, and I’d also like to think that maybe he overcame some of his insecurities during his final few years in Tidioute. Mom jokes that while he was always “Faith’s husband” in Pleasantville, she became “Gary’s wife” in Tidioute. He was so known and loved here, and I know he felt so at home in this town and especially in Smokey’s shop, which he credited with giving him an extra 18 months of life. I like to think that his last few years were some of his happiest, which also makes it so tough to lose him when we did.

Dad often commended me by saying, “Ya done good, boy!” Now that he’s gone, I fear that I didn’t tell him that enough over the years. I often told him I loved him, and I always knew that he was proud of me. He said last summer that his kids were the good that he has done in the world, and it will be us who make this planet a little better place on his behalf. While I hope that is true, I want him to know now – if he never felt this before – that I am proud of HIM, too. I am proud to be the son of Gary Donald Francis. I hope he knows that. Dad, if you can hear us now, from where you are, I want you to know that I am proud of you and proud to be your son. And more than that, we are all proud of you. You were taken from us far too soon, and it is still hard for me to fathom that you are really gone. I keep expecting to walk into the apartment and see you sitting in your rocking chair or find you down at the river with a line in the water. You have left behind many grieving hearts, unaccomplished plans, and unfilled furniture orders. But for the 64 years you were given, from the deepest place in my heart, I say, “Ya done good, Dad!”

I love you and miss you, and I pray that we’ll be united again someday.

Thursday, May 17, 2007

An Open Note of Thanks

I've had such an overwhelming response from friends during this trying time, and I want to deeply thank everyone for every word, thought, and prayer. Our family, while still grieving, is so held up right now my our community, both near and far.

After being awake around 40 straight hours, I finally slept last night. I was so afraid to sleep... every time I had tried, I could shake thoughts of Dad and images of him during his final week and especially final hours and even minutes. I ended up sleeping with Mom, harkening back to childhood days of nightmares and monsters under beds. I worried that it would be too much for me to sleep in my Dad's spot, but maybe my overall fatigue allowed me to sleep quickly and soundly through most of the night.

I still have much to write about his final hours - there were many things that night that were mystical and one could say providential. His leaving us is much too soon, and it still often seems like I am writing about someone else's life, yet the pain is surely mine. During his illness, I never felt that this was necessarily "unfair," and I was not angry. But confronting the loss, I'll admit that I do have some of those feelings. I know that much healthier men have gone younger than Dad, and I know we live in a world of constant tragedy (and hopefully constant redemption). Still, when it happens to you, it is hard not to wish for what is otherwise and feel like justice was somehow not done. He was far too young and this all happened far too quickly. But these feelings are part of the grieving process, I suppose.

But back to the thanks, I appreciate all the love and support. I have gotten wonderful emails and calls, and there are even friends of mine coming this weekend from as far as Chicago and Washington, DC. I feel that in that way - as my Mom pointed out - I can be a testament to my Dad, who was my model for being friendly, outgoing, and genuinely liked by those he knew. I can't tell you the times so far that people in my folks' little town and their apartment complex have told me stories about how my Dad helped them in a pinch or went out of his way to be a friend and neighbor or picked them up with a joke or story, often done so that no one knew about but Dad and the person helped or encouraged. He was just so genuinely liked here, and I feel like this entire town - in some collective way - is grieving his loss and will not quite be the same now.

There is so much more to share - I have over 20 pages of notes to sift through, including several hand-written ones from the night he died when I couldn't sleep and kept vigil by his bed. For my own sake, I'll get to them. There are also ample memories and remembrances, as I'm sure there will continue to be as more family and friends roll in, especially starting today. Emotionally, Sunday's service seems in my next lifetime, but a day at a time.

Thanks again, all. I love you.

Wednesday, May 16, 2007

Gary Donald Francis

Gary Donald Francis, 64, of Tidioute, formerly of Pleasantville, died Wednesday, May 16, 2007, at his home after a short battle with cancer.

Gary was born November 8, 1942 in Bath, New York, the eldest son of the late Donald Lavern Francis and Louise Emerson Francis. Gary was a 1960 graduate of Titusville High School. He joined the Marine Corps, serving from 1961 to 1964 during the Vietnam Era, in which he was wounded twice. He received the Good Conduct Metal twice before being honorably discharged with a rank of corporal. After leaving the service, he worked in a variety of places, most notably for his father at Agway. He also greatly enjoyed working for John Cubbon.

Gary was an avid outdoorsman. He enjoyed hunting, fishing, and just being outside. He was an active member of the Pleasantville Volunteer Fire Department for many years. Later in life, he found great solace and joy in a hobby from his youth, woodworking. Thanks to the use of a good friend’s shop, Gary filled his last year with furniture-making.

He married Linda Loucks and had two daughters. Gary and Linda divorced. He married Faith Darlene Baker on July 18, 1976, in Pleasantville. They had two children.

In addition to his father, Gary was preceded in death by a brother, William.

He is survived by his mother Louise Francis, Chapmanville, PA, his wife Faith, children: Amy and her husband Eric Derk, Philadelphia, PA, Melissa Francis, Greenville, NC, Robert Donald Francis, Washington, DC, and Bethany Francis, Titusville, PA. He is also survived by a sister Nancy and her husband Raymond Kopf, Chapmanville, PA and a brother Edward Francis and his wife Carol, LaPorte, Indiana; grandchildren: Olivia Francis and Henry Derk; and several nieces and nephews.

Friends will be received at the James M Higgins Funeral Home 3 Elm Street, Tidioute, Saturday afternoon, May 19th from 2 to 4pm.

A memorial service will be held Sunday, May 20th, at 2pm in the Tidioute Baptist Church with Pastor Jerry States officiating. In lieu of flowers, the family asks that contributions be made to the American Cancer Society, Hospice of Crawford County, Tidioute Towers Residents’ Fund or the Pleasantville Volunteer Fire Department.

My Dad, Gary Donald Francis (1942-2007)

Friends,

It is with the heaviest imaginable heart that I let you know that my Dad, Gary Donald Francis, died at 4:41am this morning at home with my Mom and me at his side after what turned out to be a short battle with cancer. Thanks to the many who have been supportive of me through his illness, and I'll continue to need it as I cope with this immeasurable loss. It is hitting me especially hard. I am not sure what to do with myself. I can't sleep, although I've been up for over 24 hours. The grief is too much. The finality of Dad being gone forever frightens me. It seems so surreal, maybe like Dad felt in his final hours when he could see and understand but not communicate. I feel like i am floating through this, like it mustn't be me and isn't really true. And Dad cannot be gone... for good.

For any interested or remotely close, calling hours will be from 2 to 4pm at the Higgins Funeral Home in Tidioute, PA on Saturday, May 19. A memorial service will be held on Sunday, May 20, at 2pm at the Tidioute Baptist Church.

I love and miss you so much, Dad. I am not sure how I'll get along without you. My heart is rended.

Tuesday, May 15, 2007

A Decisive Turn Towards Home

Today has been one of the most exhausting and emotionally grueling of my life.

Dad took a rather significant turn for the worse today, although he has rebounded slightly this evening. In any case, it seems we are losing Dad, and today was the most perceptible step towards that thus far.

Dad had a rough night last night, and he was up a number of times needing my help to make the tough trip to the bathroom. Around 7am, I had again helped him to the toilet. However, when Mom and I started to help him back to the bedroom, he essentially stopped helping. He could no longer support himself at all nor cooperate with our requests. For a harrowing few moments, Mom and I both worked furiously to keep him from falling, me holding him up (all 230 pounds) while we scrambled to get a chair underneath him. Once we did, his demeanor had changed, and he was no longer responsive. We managed to get him into a wheelchair, but he was essentially vegetative all morning. Hospice came in the afternoon, and they confirmed my thoughts that something had likely happened in his brain. His left side was drooping some and his left eye was dialated. Our nurse said his blood pressure reading indicated a possible stroke or some other brain event. I cry when I think that I was literally holding him when he made this next slip away from us.

It was a devastating afternoon. Grandma was here for the day, and she and Mom and I cried as we saw Dad essentially vegetative and unresponsive. I cannot convey the emotions this day contained, although maybe some day I will try. My heart was broken for my Dad, whose body is being ravaged and taken over by this disease, and we are slowly seeing him slip away, both mentally and physically. I grieved because I feel in some significant way that today might be one of those very few days I look back upon as when we lost him.

With the help of hospice, we got him set up in a hospital bed in the living room this afternoon. Mom and I ate dinner and cried some more. Since this afternoon, I have felt invisibly tethered to Dad's bedside, not wanting to leave. I think I paced a groove in the floor by his bed. I missed no chance to hold his hand and talk to him. I finally coaxed a small response from him. I asked if he could talk, and he mouthed "No." Then I asked if he was in pain, to which he also said "No." I grieved that that might be the last communication with my Dad before he slipped away, although I was relieved that he is in comfort.

Our hearts have been somewhat placated because Dad has perked up some this evening, and he has become more responsive to our questions and comments. Those small moments of communication and contact through the veil of his disease have been lifelines to us this evening. He is answering some of our questions and seems to understand us. He also has tried to form sentences, and while some are unintelligible, sometimes he gets through to us. Little things like that are like 20-ton anchors for us in this time; his small responses are tides of relief, if even the fact that we can confirm with him he is comfortable and not in pain.

I cry when I think of how far he has slipped, and it breaks my heart to think of how helpless he must feel now and how these damn growths are pushing and prodding things in his brain at every moment, making him less and less like himself, taking him from us.

It is so tough to think of him a few months ago, so happy and vibrant, doing his woodworking and being the man about town. He was so happy. And I think of some of our recent conversations, which now seems helpless ages away as he struggles to form words and tell us simple things. And it is hard to fathom that even just yesterday morning he scootered himself across the street alone (although I watched from afar to make sure he made it) and ordered breakfast on his own (calling me on the intercom before he left requesting $10), and yet tonight he is bed-ridden and significantly diminished, mentally and physically.

This has been a cruel journey, and today - confronted with Dad's mental diminishment and helplessness - I had that flood of grief that I knew would come. I cried and was on the verge of tears when they were not streaming. It will be so hard to continue to watch him disappear in front of us, and now I am dreading how exactly he will go and who will first discover he has passed. For my Mom's sake, I hope it's me.

But he is still with us, and like I said, I feel like I do not want to leave his side again until he leaves us for God. I want to sit with him, hold his hand, stroke his arm, sooth him, talk to him, read to him, assure him I love him, and spend every moment possible together. I found myself today checking him every few moments to make sure he is comfortable and has what he needs. I could not sit down. I mustn't turn my eye, or maybe he will need something or have a pain or try to speak.

I look over at him right now as I type, and I see my Dad. I love him so much. And yet he is a shell of the man who raised me and cheered me on as an adult. I wonder - in some existential way - where he is. And as a doubting Thomas Christian, I wonder what his soul might look like and if it too is somehow warped by this disease. Where has my Dad gone? What happens to his essence as his body is taken over my this alien force? Is there some sort of milk and honey place waiting to receive him?

I am not sure how I'll get through this. I want to make him better... to have my old Dad back, not the one cancer has harmed. But yet, he is still my Dad, and I feel closer to him right now than I ever have in my life. Even in this state, I'd rather be here to change his soiled shorts than anywhere else on earth. Take your riches, take your fame, take your travel. I am home.

God, have mercy on my Dad. We love him so much. Be gentle with him and take him in your time. Give us good time together. And dip your finger in cool water, both for him and us who surround him.

"God, for all that has been, thanks. For all that will be, yes."
- Dag Hammarskjold, Swedish diplomat (1905 - 1961)

Monday, May 14, 2007

A Few Pictures from the Last Few Days

Cute one of Mom and Dad moving in for the peck (and that's not a string of spaghetti between them... just the backdrop of our tan-colored word processor)...


Dad at Rockmere looking out at the Allegheny River...


Dad with old friend John Cubbon...

Monday's Update

First of all, thanks to those who are reading these updates, and sorry for not posting daily. Some days I have been unmotivated or too tired. I am still doing my own note-taking and cliff notes journaling, and I'll try and post when I can.

Dad:

Today has been a very difficult day. I've seen already that each day holds many signs of hope and despair, moments of optimism and fear. Today was maybe the most quintessential example of that thus far. Dad was up early today and seemed as adventurous as he has in days. He ventured across the street on his scooter to one of town's little diners, his first time to go that far to my knowledge. Shortly after he disappeared out the door for his morning trip to the building's side porch (my folks live in a 5-story apartment complex mostly for seniors), he called me in the apartment using the intercom and asked me for $10!?! He zoomed across the street and boldly ordered a biscuit and gravy and drank a chocolate milk. Unfortunately, it apparently all came up just as he finished, and he returned a bit soiled. We are thankful for all our friends at the restaurant, who cleaned him up and comped his meager meal. (One knows everyone in small towns like ours).

However, upon returning, he was as weak and unsteady walking across the room as I have seen him, and it took the help of both Mom and me to just get him the few feet from his chair in the living room to his bed. He was so timid and almost afraid with each step, thrusting his butt backwards and reaching his arms forward, like a child afraid to jump into a pool. Mom wonders if it is more of an emotional reaction to the embarrassment of throwing up his meal at his local coffee haunt in front of some of his friends.

But this evening has been most discouraging. He is almost completely out of sorts and has suddenly taken to wetting the bed, showing no interest in eating, and not being cooperative with some of his treatment because all he wants to do is sleep. Just now, I put some "paper shorts" on Dad to help in case other accidents, yet another example of the uncanny way our roles have reversed from when I was a baby.

Then again, during his final bedtime prep, he definitely said some lucid things, and he remembered what he had for breakfast when I asked (and he remembered throwing it up). It is really hit and miss, but I still think generally he knows what is going on. I imagine his cloudy-headedness is due to the tumors, which the radiation can only stave off for so long. But I'm no doctor.

Mom teared up a bit when we talked about this rough evening, but she continues to be hopeful he'll bounce back. Me, too.

Hospice was here again today, as they will be every Monday, Wednesday, and Friday. We are likely going to have a hospital bed delivered to make Dad more comfortable (and hopefully help Mom get better sleep too).

Other Stuff:

I have been fighting a sickness of my own, one which began as some sniffles after my night on the bus coming home a week ago. This weekend it progressed into a lot of sinus pressure and discomfort, then it moved south and became nausea. Last night it again migrated, this time to my chest. I slept very little, as I had to be sitting up to be able to breathe. So, I made my own visit to the doctor this morning and was diagnosed with a lung infection of some sort, which has affected my voice and throat. Fabulous. Our family doctor prescribed some antibiotics and strong cough medicine, but apparently it will still take a few days of this medication for me to completely beat this thing. I am apparently no threat to my Dad's health, which is great, but as we all know, it is no fun not to be 100%. I feel a bit better tonight after a few doses of meds, and hopefully I'll manage to sleep well. I am really wiped out.

###

Mom remains optimistic about Dad bouncing back, and there is no reason to think he won't, as he is so variable from one hour to the next. We are still extremely grateful that he has no pain. Still, with every downturn is the looming fear that he won't bounce back and that we may have had our last moments of total (or even partial) lucidity. We still have hopes to do some digital recording of his memories and stories, but I worry we'll miss our window.

I've noticed with this roller coaster that sometimes it is so hard to have perspective since change with him is incremental (in the big picture sense). Taking a step back, I realize how we - as his caregivers - downwardly lower our standards for what we think is "good." When I think back to the weekend the interns spent here just a few weeks ago, Dad was asking pointed questions of them and prayed an eloquent prayer of hope and justice over our shared picnic lunch. Days before he had excitedly jaunted all over this area with Mom in the car, scoping out places for us to hike and play. Now, in an eerily imperceptible way, we've arrived at the point of just being thrilled when he shows some awareness or wants to do something other than sleep. Even when I first came home just a week ago, before the scooter was bestowed, he was using his walker effectively and making his way around the building. Now he cannot cross a room and has trouble standing on his own.

###

The weekend was relatively good, with a Saturday visit to one of Dad's old employers, a man who has always been a good friend to Dad and very good in his treatment of our family. Dad's Mom and sister visited on Mother's Day, and Dad surprisingly - with no prompting from us - ate a ginger cookie and some cheese danish without problem, the first such food he has had in weeks!?! He HAS always had a weakness for sweets.

###

I used my visit to the family doctor to talk about my Dad, and he reaffirmed our decision to go with hospice, saying that he wouldn't put Dad through the rigors of chemo at this point. Addressing our concern about further testing to confirm what is now just assumption that his cancer has spread elsewhere, our doctor again said that there is no value in further evaluation with his case given the nature of the cancer and the fact it has spread. He said that the prognosis for those with small cell lung cancer has not changed in 60 years. According to him, once it has spread, there is simply little to be done. Of note is that his own mother died of this same thing just 6 weeks from diagnosis. With her, they also did the brain radiation and then hospice care.

###

On the lighter side, I took the afternoon today to go golfing with a friend who was in town. It was nice to get away and take my mind off of things. And actually, I am really happy with my game considering I haven't golfed in about 2 years. I did very well with my drivers and irons, but aside from a few respectable putts, my short game is crap. The pitching wedge will be the end of me.

###

Tomorrow Mom and I were planning on a shopping trip to the "big city" (Erie), which is 60 miles away. The plan is for Grandma to come and sit with Dad for the day, but after his rough evening tonight, Mom is having second thoughts about leaving him for Grandma alone. Grandma did care for my Grandpa for years during the illness that took him from us at Thanksgiving, but I understand Mom's concern. We'll see how Dad is tomorrow.

###

I overheard Mom say to Dad, "Where's my fighting Marine?"

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Tonight, I told my Dad I love him, and he nodded in response.

Friday, May 11, 2007

Friday's Update

Dad's Day:

It seemed like such a day of hills and valleys for Dad. He seemed especially lucid and clear-headed at times (especially this morning), but we also had no luck keeping food or liquids down, and his body just isn't working well. Hospice came this morning, and with the three-person tag team of the nurse, me, and Mom, we performed a successful enema (which was much needed, since it had been a week since his last BM). Dad managed a longer errand run to town with me and Mom, but I do think it wiped him out. Dad and I took a nice walk (in his case, scooter ride) down by the river this evening. My day ended with me giving Dad a rectal suppository, a definite first for me. It was such a vulnerable thing, and Dad has been so amenable to do what the nurse or Mom and I ask. Still, I worry both that he has little fight and that his body just isn't cooperating as well as his mind is.

Miscellaneous Thoughts:

It was tempting to feel a bit... I don't know... bummed that the other 8 interns were in Philly today, hanging with Shane Claiborne, while I'm in a one bedroom apartment applying rectal suppositories. But when I thought more about it, there is no place I'd rather be, suppositories, enemas, and all. Make no mistake that - all things being equal - I'd rather steer clear of shit and assholes, but this is one of those times where the good is clear. After all Dad has done for me, this is my time to serve him.

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Today got an early start, as Dad was up around 6am and needed a little help in getting the scooter equipped to go outside. I couldn’t drop back to sleep right away, and then Dad came back. He seemed to have an appetite, so I made him some food, although he involuntarily spit it all back up. He also need some help on the toilet. All day today, it felt good to be of real help to Dad.

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Sometimes Dad will unintentionally lean on the horn button on the scooter, and with his bad hearing, he often doesn't realize it right away. It's always worth a chuckle.

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It was a gorgeous day, and we three had a nice visit to Titusville. I pushed Dad in his wheelchair all throughout WalMart. He actually fell asleep several times, but then I didn't feel guilty stopping to grab the couple things I needed. We checked on fishing licenses, but Dad didn't want to buy one today for some reason. Hopefully he'll feel up to it as time goes on.

On the way home, Dad had us drive through Pleasantville and by our old house, then to Neilltown Cemetery where Grandma and Grandma are buried (and where he will be with Mom). He didn't say much, but I wonder if he was strolling down memory lane and thinking about what he is facing. I picked some violets from the graves of my Grandma and Aunt for Mom to send to her sister. Again, the theme of the scenic route...

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I asked Dad if he is okay with us wanting to audio record his memories, and he said he is. I also asked if he'd let me take pictures of him and Mom at Paradise Valley, where they were married. He was cool with that too.

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Tonight, at the perfect time of day in early evening, Dad and I took a nice walk down by the river. Mom and I talked over dinner about our doubts with calling in hospice so quickly and not being more aggressive with treatment, but in talking with Dad on our walk, he was very clear that he is against any chemo that won’t cure. He doesn’t want to put Mom through that, he said. He again said that he is resigned since there is nothing he can do, but Mom and I both worry that he has given up.

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Oh yes, and the highlight of my life so far – giving my Dad a rectal suppository. It actually wasn't too bad, but no real indication it worked. It was supposed to help him keep liquid down, but when he drank later, it came back up. Our biggest fear is how weak he is getting, and I even worry that starvation or dehydration will get to him before the cancer does. That begs the question that I really fear - how will he ultimately go? Part of me dreads just seeing him waste away or be in pain, but I am nowhere near ready just to let him slip away sooner rather than later. I am not wishing for some drawn out illness, but yet, I want Dad around. Right now, I'd give my right arm for him just to be able to keep food or liquid down. He is so weak. His legs look skeletal. He won't last long without eating. And this isn't what we asked for with hospice - for Dad to literally starve to death because he can't drink a damn Ensure. I'd almost rather the cancer kill him somehow than for some mundane thing to take him. It is so hard to know what is right and what to do and where to push. Can't they do more? Hospice is good, but somehow it seems contradictory when I want my Dad to live - maybe not years more, but at least months - and they prepare him for death. There has been a lack of urgency with Dad's entire illness from start until now. Mom is a bit bothered by the fact that all indications we were initially given were positive, when it seems now that health professionals involved must have known things didn't look good from early on. There are a lot of threads to untangle. Dad has been restless; I hope he sleeps tonight.

Retroactive Entry: Scattered Thoughts from Thursday


Health Summary:

Dad seemed more out of sorts to me this morning, and he was fidgety all day. He seemed restless when he napped, which he did at least a couple times. Hospice came for the initial consultation this morning. Many have affirmed our decision to go that route, but it is still easy to second guess. It seems like we are conceding too quickly. I am especially tempted to feel that way on Dad's better days. Hospice plans to come 3 days a week. They are working on some solutions to his problem keeping food and liquid down. That is our biggest concern since it is hard for him to keep down his meds, and his significant weight loss is a real concern regarding his overall health and strength. Hospice said folks who don't (or can't) eat don't last long. They also stressed the importance of a good attitude, even during hospice.

Otherwise, this was a very busy and tiring day. Phone calls and visitors came in a steady stream throughout the day. That attention and concern for Dad is so needed, especially for his morale. Still, I can see how draining this could be on Mom and me since there might be little down time between entertaining, talking on the phone, and helping Dad. All this attention also shows Dad is cared about. He received the "gifts" today or a motorized scooter (which he loves so much) and a manual wheelchair for runs to town. Both came from other Towers' residents.

Miscellaneous Thoughts:

Last night was restless for me. I began reading Dale Aukerman’s cancer journal last night before bed, and it was helpful in that he and his family went through many of the stages we have. They even share the same cancer. But Dale ended up going with chemo, which we have not. I find that I have been second-guessing myself a lot on that. I think Dad looked to me for that call from the time when we talked in the van on the way home Tuesday. I keep reminding myself that the doctor and the nurse highly recommended hospice over chemo, but some part of me feels like hospice is “giving up.” Dale talked about the need to have a fighting spirit, and I worry with Dad that calling in hospice will feel like too much of concession of defeat and that it’ll mean his spirit and fortitude will weaken. In my dreams, I was confronting Dad and telling him with passion that he should fight, fight, fight.

Retroactive Entry: Scattered Thoughts from Wednesday

5/9/07

I asked Dad what he wanted to do today, and he said, “We need some eggs.” He also wanted to know more about computers. Anchors in the mundane indeed.

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Last night, I unpacked my one and only suit and put it in the closet. There is something surreal about bringing home the suit I’ll likely wear at my Dad’s funeral.

Also, it is hard not to think about how much time he has left. Last night, on one of his shows (NCIS), the next episode is to be continued in two weeks. Internally, I wondered, will he be here in two weeks? Will he be cognizant?

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Dad and I went driving late this afternoon. We were mainly looking for Smokey, but Dad had me stop by some fishing creeks to see where he could best find a place to sit near the water that wouldn’t involve much walking or elevation. We also stopped at Homemade Touch to talk with Karen, who welled up with tears when she got Dad’s news. Dad said that I am home and that “I’ll be his main man for awhile.” Right on.

During our drive, I asked Dad how he was feeling about all this. In a spirit of acceptance, he said there is nothing he can do. I also asked Dad if he was afraid. He said no. He said he knows the Lord. He also said that he doesn’t understand what God has in mind, but he trusts God if He has something else in mind.

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I told Dad I registered for the Marine Corps Marathon today, and he smiled. He asked what I’d get if I win. I thought that was funny. i am not sure if he was serious or not.

Retroactive Entry: Scattered Thoughts from Tuesday

5/8/07

I’ve come home to watch my Dad die. Up until now, I have said to others that I have not been fighting this, just hoping and praying for this to be a graceful last days full of sweet and holy moments. Yet today, when I saw him and thought more about what is being taken from him and what he is facing, I pushed back. My soul resisted this inevitability. Even though I wish my Mom and Grandma wouldn’t find solace in empty prayers for healing in the face of a cancerous inevitability, I am a hypocrite because I too don’t want to concede to this series of events and certainly not to this disease.

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I can already see that there will be moments when my vision of a meaningful and peaceful surrender in these twilight weeks and months will be shattered by the reality of a flesh and blood person, who is my own father, struggling and deteriorating in front me.

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It will be good to help my Mom. The doctor asked who is caring for him, and I felt such peace when I could offer that now I will be home too. Dad confessed to me in the car that he is worried about Mom and doesn’t like that – even at this early phase – her care of him has taken her away from many of her normal comings and goings. I can be relief for her devoted service, which already includes all manner of dressing, undressing, driving, cooking, caring, and essentially always being present.

Mom cried tonight over dinner while Dad was napping. She only said that she is sad he won’t be able to woodwork.

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We watched Jeopardy tonight, which has always been one of Dad's favorites. He got final Jeopardy right, then quipped that his brain still worked.

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I get excited whenever he drinks or eats anything… those needed calories and hydration.

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I find myself getting so afraid that it is just weeks, not months. I can’t fathom Dad just being here such a short time. Somehow, “months” seems so much more soothing, even though it in and of itself is also so short.

Retroactive Entry: Initial Email Letter to My Intern Community

5/8/07

Hello, much loved and missed 'terns (and revered intern coordinator). My family and I just arrived home from the hospital, me after a night and morning on the bus. Dad is taking a nap and Mom is whipping her and me up a late lunch in quintessentially resourceful Mommy style.

I plan to write more later once I take time this evening to compose my thoughts, and at the very least, I think I may post them to my blog so there is a place folks who want to keep tabs can without me sending a million separate email every day. I am undecided if I'll use my current blog or create a new one just for this. I'll let you know...

The short update is that this afternoon played out as I has expected, which I suppose is good and bad. My Dad has lost a lot of weight even since our visit a week and a half ago, and I felt very secure in my decision to come upon first laying eyes on him. I can see in his countenance that time might be short.

I had the chance, sitting at a picnic table under a clear and perfectly blue sky, to talk with my Mom shortly before we met with the doctor. As she has with everything thus far, she took it well, and our talk was simple but sweet.

My Mom, sister, Grandma, and me then sat together with my Dad when we talked with the doctor. It is as I had known - his cancer is fast-moving, aggressive, and essentially untreatable. At this late stage, his recommendation is to avoid chemo, as it has a small chance of having any positive effect at all, and more than likely, it will only diminish him for the time remaining. I teared up when my Dad asked the doctor how much time he has, to which the doctor replied, "a few months." I cry for me, my Mom, my sis, and my Grandma. But I especially hurt for my Dad, for while I can try to see this as some sort of graceful time full of special moments for me and him, I of course get to eventually rejoin my life, already in progress. He is facing truly the end of his mortal life, which is something I cannot even pretend to understand. I grieve.

I've said that I have thus far not been fighting this, but I felt a little of that impulse today. I don't want to lose my Dad. And it is not just about the things in MY life that he'll certainly miss - my wedding, my kids, my accomplishments - but seeing him today, I thought of all the things he'll miss for himself. He will likely not woodwork again or see another Thanksgiving, Christmas, or new fallen snow. He is leaving his wife, four children, sister, brother, and Mom, long before his time. He is leaving his friends, his morning coffee, his western movies. He is leaving life, or rather, life is being taken from him. I grieve for us, and I grieve for him.

I talked with Dad some about our options to clarify what the doctor said, and he seems amenable to calling hospice and foregoing chemo. At first he was asking about more tests, and he seemed to have this fight in him for chemo. But I explained what we are facing. I just hope he keeps his spirits while the immutable gravity of this news for him - his demise - sinks in.

We stopped for ice cream on the way out of Titusville, and then on the way home - at my Dad's behest - we took the scenic route. We drove the dirt roads, and Dad pointed out a place where he saw two bald eagles and some streams he'd like us to fish in the coming weeks. We stopped by the homes of two of his dearest Tidioute friends so he could deliever the news. "Bad news," he always started out. "Untreatable. We're going to have hospice come in and help and not do chemo. He is giving me a few months. My son is here to help, and I have my family."

I am here to help. I get teary at that, too. Thank you guys for releasing me to take care of my Dad, help my Mom, and be home for what is essentially helping my Dad die. I am afraid. I am sad. I am not sure how I'll get through seeing him slowly deteriorate in front of me, the Dad who gave me life and raised me and has always been so proud of me. Not to be cliche, but I guess it is my time to care for him. I look forward to that fishing, to long drives wherever my Dad wants to go, and moments just around the house.

I love you guys too, and forgive my overly sappy or emotional emails in coming weeks. I'll need someplace to put that stuff. I so loved my send off last night, and it'll always be special to me. I am not yet sure about Friday, but even if not, hopefully sometime or another. Set a place at the table for me.

Love,
Bob

P.S. I didn't "All Staff" this, but feel free to forward it to whomever you'd like (even "All Staff," if you think it appropriate).

Retroactive Entry: On the Way Home to Stay

5/8/07, 6:47am, Pittsburgh Greyhound Station, waiting for my connection

After the short night on the Greyhound, I am in the Pittsburgh station. There are volumes to write about all the events of the past week, but I have yet to mark a page. I am thinking I’ll have more time going forward, and hopefully I’ll make it a priority.

In a sense, I thought my journey home, although a well-worn path, would be more momentous than it has been. It could very well be that I am going home to help my Dad die, but right now, I just feel like usual – tired after two short nights, mildly anxious about getting all my stuff home, and eager to get home, unpack, and get organized and settled. I am really not thinking about much of anything, and I am definitely feeling a bit numb… or maybe just normal. In a matter of hours, I am going to tell my Mom about Dad’s long term prognosis, information I learned after my own detective work last week. I’ll sit with the family as we meet with the oncologist, and then I’ll be alongside Mom, Dad, Beth, and maybe Grandma as we decide what to do. I also just left DC – my community, my work, my friends, my current home. I feel it slightly, but the impact of that is also lost on me, even though there were some tears and it was a moving week of support and remembrance from my DC community.

I am not really even sure what to write. It is a very liminal time, and maybe with time home I can reconstruct with more poetic prose. But for now, not much to write. There have been moments of emotion, but right now I am stoic. We’ll see what today brings… the time I’ve been thinking about for weeks – and in a sense years – is close.

Retroactive Entry: Visit Home in Mid-April

4/15/07

I just talked with Dad some outside. He has some worry about the risks associated with the upcoming needle biopsy. He also said he misses Grandpa. He feels bad kind of leaving me out of some of the planning [about which I expressed some hurt], but he wanted to get it done. He also said that Mom is putting up a good front but is jello inside. I suppose that could be true, and in any case, it is probably good for his peace of mind to think that.

He said that my shaving my head was an act of solidarity and was “neat.” He wants to get better so bad, but he knows God is in control. He has people all over the US praying for him. When I ask him how he is, he says he has peace of mind and no pain. Both are not to be taken for granted.