Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.
Tuesday, February 28, 2006
February 28, 2006 - Looking for My Halberd
Another vivid pre-chemo dream this morning, as I awake. I’m at some kind of formal banquet. My job is to dress up in a fancy uniform, rather like those worn by the Swiss Guard at the Vatican (although the colors of the costume in my dream are different). My job is to stand at the door as people arrive. For some reason, it’s very important to the banquet-guests that there be someone like me at this event, decked out in this authentic medieval outfit.
The colors of my uniform are blue and white – which, as I reflect later, just so happen to be the colors of the doctoral gown of the University of St. Andrews, where I got my Ph.D. I’ve never sprung for one of those costly academic gowns, because I haven’t worked as a full-time college or seminary professor or administrator since getting my degree. I’ve continued in pastoral ministry, and have only done some very part-time teaching at New Brunswick Theological Seminary.
Previously in my dream, I’ve been fitted for these fancy duds, which have been supplied by a costume shop. They’ve been delivered to the banquet hall ahead of time, in a series of special suitcases that resemble musical-instrument cases. One boxy-looking one contains the helmet I’m to wear on my head. Another is about six or seven feet long, in order to accommodate the halberd I’m supposed to hold (a halberd is a medieval weapon that’s a cross between a spear and an axe).
The only problem is, there’s a lot of confusion and fumbling around in the minutes before the banquet guests start to arrive, and there’s some real doubt that I’ll be able to get into my costume on time. Various pieces of the costume have gone missing, and people keep showing up to borrow this or that item without permission. I have to do a fair bit of running around, to find these people and get the pieces of the costume back. One particular problem is the halberd. The only one I can find, inside the long case the costume people have supplied, is very authentic-looking, but is only the size of a letter-opener. I’ll look ridiculous standing there and holding that (I can only imagine what Freud would say about that particular symbol). I wake up before the problem gets resolved.
The meaning of this dream seems pretty obvious. Tomorrow I go in for my third chemotherapy treatment, and afterwards I can look forward to a week or so of feeling sick and tired. (I’m getting pretty “sick and tired” of this chemo routine already, and I’ve only been through one-third of the treatments so far.) In colorful dream-logic, the medieval outfit may be related, somehow, to the pulpit robe I wear as a minister (another sort of uniform that’s centuries-old), or possibly an academic gown. Looking at what I've written, Claire points out to me that the meaning is probably larger than my professional life: it reflects my difficulties in getting through the garden-variety demands of life in general, as a cancer patient.
She suggests this scripture passage as particularly applicable:
“Therefore take up the whole armor of God, so that you may be able to withstand on that evil day, and having done everything, to stand firm. Stand therefore, and fasten the belt of truth around your waist, and put on the breastplate of righteousness. As shoes for your feet put on whatever will make you ready to proclaim the gospel of peace. With all of these, take the shield of faith, with which you will be able to quench all the flaming arrows of the evil one. Take the helmet of salvation, and the sword of the Spirit, which is the word of God.” (Ephesians 6:13-17)
I don’t suppose too many other people have dreams about medieval ecclesiastical uniforms, but there’s all manner of historical trivia rattling around in this over-educated brain of mine. Some of it isn’t good for much else besides dream-fodder. I don’t think there’s any coherent message in the dream: just an expression of the complex feelings that go along with the treatments I’m receiving. But that’s one thing dreams are good for. They’re a way in which the sleeping mind can quietly go to work on solving life’s problems.
Sunday, February 26, 2006
February 26, 2006 - On the Road: Maryland
It’s been several days since my last blog entry, because I’ve been away. We decided to accept an offer from Jane, a member of our church, to use her second home in Cambridge, on Maryland’s Eastern Shore, while she and her husband Leigh were in Florida.
For us, it served a double purpose: not just a few days’ getaway while I was feeling pretty good towards the end of a treatment cycle, but also an opportunity to take our daughter, Ania, to nearby Chestertown, for a visit to Washington College during her school’s mid-winter break. Ania is a high-school Junior, so now is the time when we need to begin thinking about what’s next for her, after her high-school graduation in June, 2007. Since Claire and I both graduated from Washington College, and since a small liberal-arts school is Ania’s preference at this moment, it seemed like a natural place to start. Our twelve-year old niece, Elizabeth, went along for the ride as well.
Jane and Leigh’s home, where we stayed, was more than comfortable, and also offered a lovely water view over the docks and recreational boats in Cambridge’s small harbor. We soon realized the further advantage of staying in a home, rather than a hotel. The reason was fatigue.
Towards the end of each three-week treatment cycle, I’ve generally been feeling pretty close to normal – with fatigue being the only exception. It’s a side-effect that sneaks up on me. I feel pretty good upon leaving the house, but I tire very easily.
This became very evident while we were visiting Washington College. I had a high level of interest, personally, in seeing the campus – not just for the obvious reason of helping Ania begin to discern what college or university may be right for her, but also for the nostalgia, for Claire and me, of visiting old haunts.
We were warmly received in the Admissions Office, and after the informational interview we went on a campus tour, led by a congenial and well-informed freshman. She set a brisk pace across the campus – which, due to enrollment growth that has nearly doubled the college’s size since the time we were there, is a bit larger than we’d remembered. It felt larger in a different sense as well, as we quickly realized that Claire and I were lagging behind Ania, Elizabeth and our tour guide, who were talking animatedly among themselves up ahead of us. With each stop, I needed to find a place to sit down, or at least something to lean against.
Finally, feeling out of breath and with my back hurting, I bowed out of the remainder of the tour. I told the others to go on ahead, took a seat inside one of the campus buildings, and waited there for them to finish the tour and join me there.
This is not the sort of fatigue that makes me want to sleep. It’s more like a lack of physical stamina. I’m fine as long as I’m sitting somewhere quietly, but the least amount of walking or other physical exercise leaves me panting.
During the free time we had in the Cambridge area the next day, we set out to do a little sightseeing, but found that all the museums and tourist sites in this historic, waterfront town were closed (no great surprise, on this off-season weekday). Ordinarily, a walking tour down the streets lined with eighteenth-century houses would have appealed to us, but it was cold and windy and I would never have been able to keep up with the others. At the tourist-information office, we picked up a brochure describing a self-guided driving tour of Underground Railroad sites and locations associated with Harriet Tubman (the African-American slave who escaped her captors and courageously led many other slaves to freedom during the years before the Civil War). That suited us very well, giving us an excuse to explore the unspoiled countryside of Dorchester and Caroline Counties as well as doing something educational with the kids.
Claire did most of the driving – both on our trip down to Cambridge and back, as well as on our circuit through the countryside. When I’m in good health, I usually insist on driving (male ego, mostly), but I accepted her role as principal driver without complaint.
This morning – Sunday – I assist Robin and our guest preacher, the Rev. Susan Thompson, with leading worship. I enjoy a number of conversations with church members after each service, but notice that, as I’m sitting in the chancel during the second service, I’m feeling increasingly tired. I usually feel quite drained after preaching two services – preaching is emotionally exhausting in ways that only those who do it regularly can understand – but this day I’m not even preaching. My role as a worship leader is light. Even so, I go home afterwards and take a four-hour nap in the afternoon.
I’m continuing to find that living within unaccustomed limits – even in times when I’m feeling otherwise pretty good – is all part of the cancer experience. Life goes on, though, and the best thing to do is to try to keep up as normal a routine as possible, making small adjustments as necessary.
For us, it served a double purpose: not just a few days’ getaway while I was feeling pretty good towards the end of a treatment cycle, but also an opportunity to take our daughter, Ania, to nearby Chestertown, for a visit to Washington College during her school’s mid-winter break. Ania is a high-school Junior, so now is the time when we need to begin thinking about what’s next for her, after her high-school graduation in June, 2007. Since Claire and I both graduated from Washington College, and since a small liberal-arts school is Ania’s preference at this moment, it seemed like a natural place to start. Our twelve-year old niece, Elizabeth, went along for the ride as well.
Jane and Leigh’s home, where we stayed, was more than comfortable, and also offered a lovely water view over the docks and recreational boats in Cambridge’s small harbor. We soon realized the further advantage of staying in a home, rather than a hotel. The reason was fatigue.
Towards the end of each three-week treatment cycle, I’ve generally been feeling pretty close to normal – with fatigue being the only exception. It’s a side-effect that sneaks up on me. I feel pretty good upon leaving the house, but I tire very easily.
This became very evident while we were visiting Washington College. I had a high level of interest, personally, in seeing the campus – not just for the obvious reason of helping Ania begin to discern what college or university may be right for her, but also for the nostalgia, for Claire and me, of visiting old haunts.
We were warmly received in the Admissions Office, and after the informational interview we went on a campus tour, led by a congenial and well-informed freshman. She set a brisk pace across the campus – which, due to enrollment growth that has nearly doubled the college’s size since the time we were there, is a bit larger than we’d remembered. It felt larger in a different sense as well, as we quickly realized that Claire and I were lagging behind Ania, Elizabeth and our tour guide, who were talking animatedly among themselves up ahead of us. With each stop, I needed to find a place to sit down, or at least something to lean against.
Finally, feeling out of breath and with my back hurting, I bowed out of the remainder of the tour. I told the others to go on ahead, took a seat inside one of the campus buildings, and waited there for them to finish the tour and join me there.
This is not the sort of fatigue that makes me want to sleep. It’s more like a lack of physical stamina. I’m fine as long as I’m sitting somewhere quietly, but the least amount of walking or other physical exercise leaves me panting.
During the free time we had in the Cambridge area the next day, we set out to do a little sightseeing, but found that all the museums and tourist sites in this historic, waterfront town were closed (no great surprise, on this off-season weekday). Ordinarily, a walking tour down the streets lined with eighteenth-century houses would have appealed to us, but it was cold and windy and I would never have been able to keep up with the others. At the tourist-information office, we picked up a brochure describing a self-guided driving tour of Underground Railroad sites and locations associated with Harriet Tubman (the African-American slave who escaped her captors and courageously led many other slaves to freedom during the years before the Civil War). That suited us very well, giving us an excuse to explore the unspoiled countryside of Dorchester and Caroline Counties as well as doing something educational with the kids.
Claire did most of the driving – both on our trip down to Cambridge and back, as well as on our circuit through the countryside. When I’m in good health, I usually insist on driving (male ego, mostly), but I accepted her role as principal driver without complaint.
This morning – Sunday – I assist Robin and our guest preacher, the Rev. Susan Thompson, with leading worship. I enjoy a number of conversations with church members after each service, but notice that, as I’m sitting in the chancel during the second service, I’m feeling increasingly tired. I usually feel quite drained after preaching two services – preaching is emotionally exhausting in ways that only those who do it regularly can understand – but this day I’m not even preaching. My role as a worship leader is light. Even so, I go home afterwards and take a four-hour nap in the afternoon.
I’m continuing to find that living within unaccustomed limits – even in times when I’m feeling otherwise pretty good – is all part of the cancer experience. Life goes on, though, and the best thing to do is to try to keep up as normal a routine as possible, making small adjustments as necessary.
Tuesday, February 21, 2006
February 21, 2006 - Sticker Shock
We’ve all seen the old cartoon. It’s so familiar, and has appeared in so many forms, it’s become a cliché. A man is passed out on the ground beside his mailbox. One arm is in a cast, evidently broken. The cause of his fainting spell? Not his injured arm, it seems: for clutched in the poor blighter’s good hand is a slip of paper he’s just removed from an envelope. It reads, “Doctor’s Bill.”
I’ve just received one of those. It’s from the good folks at Dr. Lerner’s office, covering about a month’s worth of medical services. The bottom line? $25,877.05.
That’s the bad news. The good news is the figure beside it. It says, “Insurance pending: $25,703.15. My balance due – for the moment (the difference between those two figures) – is $173.90. I get out the old checkbook, and mail off the payment.
What’s going to happen next is that my medical insurer, Highmark Blue Cross/Blue Shield (acting as agent for the Presbyterian Church’s Board of Pensions), will contact Dr. Lerner’s staff and tell them how much of that “insurance pending” figure they’re willing to pay. I’ll receive a new bill – for considerably less than $26,000, no doubt – of which my insurance will pay 80%. They may even pay more than 80%, if my 20% share takes me over the top of the annual stop-loss figure – that threshold after which my medical insurance swoops in and starts paying for everything. Given my bloated medical bills, I may well hit the stop-loss this month, just one-sixth of the way through the year. (In most prior years, our family has never reached that maximum.)
So where does that huge bottom line come from? A glance at the itemized bill makes it all too clear. A single dose of Rituxan (the new monoclonal antibody-therapy drug I receive along with my chemotherapy) costs $7,500. A single injection of Neulasta (the agent that stimulates white blood cell production) costs $3,000. A single treatment with the chemo drug adriamycin costs $780. Multiply those amounts by two (for the two rounds of chemo covered by this billing cycle), throw in some smaller amounts for the other chemo drugs, the nurses’ professional services and the IV paraphernalia, and it’s easy to see how easily you can shell out enough simoleons on a couple rounds of chemo to purchase a new car.
That is, if $25,877.05 is what the treatment really costs – because the real cost is anybody’s guess. Very few patients pay the full sticker price for their medical treatment. The price is overly inflated to begin with, because the medical providers know the insurance companies are going to come in like swaggering, muscle-bound thugs and negotiate the price down to what they’re willing to pay.
So who does pay full price? Not the fortunate patients like me who have medical insurance. Not the retirees on Medicare, and not the poorest of the poor on Medicaid either – for those huge Federal agencies can throw their weight around like the gorillas they are, and win some of the biggest price concessions in the business . The only people who do pay full price are the working poor who have no insurance: the people unlucky enough to work for Wal-Mart rather than GM.
I’ve known more than a few of those unfortunate souls in the course of my ministry. What typically happens is that they have to “spend down” what meager assets they have – “spending down” is a euphemism for losing everything – until they qualify for Medicaid. The irony is that, in paying that overly inflated, full-price figure, they’re actually paying far more for the same medical services that the insured are getting at a much-reduced rate.
Any sane, logical health-care financing system would require the wealthy to pay the most and the poor to pay the least. With the exception of the very poor who qualify for Medicaid, however, what our system does is to ask the wealthy to pay the least and the working poor to empty their pockets until they have nothing left. Meanwhile, a huge percentage of the money collected – some say as much as 40% – goes to maintain the armies of clerks, accountants and lawyers required to keep this cumbersome and unequal system from completely falling apart. It’s like putting to sea in a rusty old tramp steamer – does it really make more sense to pay ever-increasing numbers of sailors to huff and puff at the bilge pumps, when what you really need is to put the sorry old tub into drydock and rebuild it from the keel up?
There are a few other places the needy can turn. Some drug companies have limited programs to offer discounted medicines to those who couldn’t otherwise afford them. Some doctors still have enough of an ethical sense to treat a limited number of needy patients pro bono. Some patients have circles of friends with the creativity and gumption to hold bake sales or firehouse dances to raise two or three thousand to throw into the kitty. Yet how many bake sales does it take to cover $100,000 or more for cancer treatment?
This isn’t plastic surgery or liposuction. Nor is it some doubtful experimental tonic, hawked by shady characters south of the border to those who will pay anything for a little hope. This is the standard, frontline treatment – that which modern medicine considers necessary simply to stay alive.
I’m grateful to receive it – and I’m equally grateful for the medical insurance that means my kids will still be able to go to college and Claire and I can cherish some hope of being able to afford even a modest home in our retirement. But that sticker shock when you open the window envelope – it’s a health hazard in itself!
Monday, February 20, 2006
February 20, 2006 - Ship of Roses
This morning I awake with the remains of another vivid dream lingering at the edges of my awareness. I sit on the edge of the bed and will its details back into my conscious mind.
Claire and I are on some kind of cruise, although the cruise ship is a large, square-rigged sailing vessel rather than a steamship. Evidently it’s a tradition, on this ship, to hold Sunday worship services in a large, airy gallery below decks. Typically, the captain orders that this between-decks area be filled with bright red flower blossoms for the occasion. The sight and aroma of these flowers – strewn throughout the room in large numbers – make for a stunning experience for the passengers, one that is among their most vivid memories.
On this particular sailing, a problem has arisen. No minister has been found to lead this worship service. Without a minister, the crew is not sure they can go ahead with the tradition of the flower-strewn room. An elder from my church – who, in my dream, turns out to be an employee of the cruise line – circulates an announcement to the passengers, asking them to nominate a minister to conduct the worship service.
No names are submitted. As Sunday draws closer, the passengers and crew grow increasingly restive, as they worry there will be no one to conduct this service. Thinking about it, I become aware that I could put my own name in. I am a minister, after all. But I’m on vacation. I’ve brought no liturgical vestments with me, nor do I have any books or worship materials either – nothing I’d ordinarily use to plan and conduct a worship service. I have only myself.
At the eleventh hour, I decide to nominate myself anyway. Although I awaken from the dream before learning whether or not I’ve been chosen as the shipboard chaplain, I’m aware that, because no other names have been submitted, I will certainly be the choice.
It’s a compelling dream, and one whose meaning seems obvious. It has to do with my own sense of self in ministry, as a cancer survivor.
The dream has its genesis in events of the last day or so. Yesterday, in worship, we had a guest preacher. Scott – who served as our seminary assistant for a couple of years in the late 1990s, while a student at Princeton Seminary – flew all the way from Seattle to be here. Having heard of my illness, and knowing we needed pulpit-supply preachers, Scott had volunteered. Ordinarily, we would never have considered bringing a guest preacher from such a great distance, but Scott had offered to use his own frequent-flyer miles, explaining that he’d been hoping to come visit some friends on the east coast anyway. So, we gratefully accepted his offer.
I was feeling well enough to be present as a worship leader, so I found myself sitting behind Scott as he preached. During his sermon, Scott mentioned how the news of my illness had come as an emotional blow to him. It was an odd experience for me to sit there, in my shaven-and-shorn cancer-patient persona, and hear someone speak of me in the third person that way. His words were kind and gracious, and the congregation received him warmly, but the experience of sitting there and hearing myself talked about led me to meditate on my changed personal circumstances.
Those reflective moments, I’m sure, started the subconscious process that led to this morning’s dream. I’m slowly growing into a new understanding of myself in ministry: I am now a pastor who also happens to be a cancer survivor. I think the shipboard gallery strewn with red flowers may symbolize a new sort of ministry to which I’m being called, as a result of my sojourn into the valley of the sick. The fact that I’m being invited to lead worship with no preparation, and with nothing by way of vestments or resources, suggests that the most important thing about this new assignment is who I am, not anything I bring with me.
I have every expectation of continuing as pastor here at Point Pleasant – as symbolized, in the dream, by the fact that it was not just anyone, but a leader of my own church, who was trying to locate a shipboard chaplain. Yet I will plainly be conducting my ministry here in a new way. I’ve heard cancer described as a life-transforming experience. I’m beginning to learn that it can be a ministry-transforming experience as well. I may be in a unique position to reach out to others in the future, in ways others cannot.
It’s as though cancer has called me back to seminary, although this is a very different sort of education than any I’ve known. This seminary issues no degrees or diplomas; I bear on my body, instead, the stigmata of a surgical scar. The classes are held in unlikely places, like chemotherapy infusion cubicles and hospital radiology suites. As for mid-terms and finals, I have no idea when I will sit for them nor what form they may take. Yet I’m determined to graduate from this demanding course, and I trust that my ministry will be the stronger for having completed it.
Thursday, February 16, 2006
February 16, 2006 - Chia Taz
People I know have been pretty good about the bald jokes... until today.
This morning, as I make my way across the street for the weekly church staff meeting, I find waiting for me... a Chia pet.
It’s the Tazmanian Devil (the Warner Brothers cartoon character). He has, er, a bit more hair than I do these days.
More than that, various friends, colleagues and acquaintances have contributed inspirational thoughts to go with my new Chia Taz. Here are a few selections...
Scott, a ministerial colleague, has done some digging into obscure biblical texts:
Exodus 20:4-6 NSRV (New Scott Revised Version)
“You shall not make for yourself an idol in the form of anything in heaven above or on the earth beneath or in the waters below. You shall not bow down to them or worship them. Even though you may have crafted them from the clay of the earth; though you may have sown seeds in them with anticipation; though they may have grown life-like hair (yea, but for a punk-rocker with hair of green); though you may come to worship them for the miracle of the growth; indeed, they are still only a Chia Pet. You, however, are my child, and I love you more than you can know. Trust in me and I will be with you always.”
Dan, another ministerial colleague, writes:
“Hair today, gone tomorrow.”
Doug, pastor of a nearby church, cites this oddly appropriate scripture passage:
“...we who have this spiritual treasure are like common clay pots, in order to show that the supreme power belongs to God, not to us. We are often troubled, but not crushed; sometimes in doubt, but never in despair; there are many enemies; but we are never without a friend; and though badly hurt at times, we are not destroyed....” (2 Cor 4:6ff , TEV)
Wendy, one of our church's elders, got busy with her concordance, and likewise found this text:
“...or as the soil makes the sprout come up and a garden causes seeds to grow, so the Sovereign Lord will make righteousness and praise spring up before all nations.” (Isaiah 61:11)
Steve, another pastor colleague, contributed this, er, exegesis:
“When I was in college I worked with a fellow camp counselor at a beach camp in Hawaii. After every week’s camp session, we threw one of the counselors into a certain spot in the ocean. But my fellow counselor, Kendall, always eluded attempts to throw him in. On the last day of camp I encouraged the camp kids to pretend that something strange was in the ocean and to call Kendall over to see it. When he got there, I quickly dunked him. A short moment later we saw his hair floating on top of the water. His hand was in a far away place, reaching from under the surface searching for his floating hair. When he emerged from the water we all saw that he was completely bald, except for a few thin strands. The children all cheered and laughed. They called him a ‘bald head.’ They cheered me as their hero. I felt horrible. I had no idea he was wearing a hair piece.
I say all this to set up this passage of scripture:
‘From there Elisha went up to Bethel. As he was walking along the road, some youths came out of the town and jeered at him. "Go on up, you baldhead!" they said. "Go on up, you baldhead!" He turned around, looked at them and called down a curse on them in the name of the Lord. Then two bears came out of the woods and mauled forty-two of the youths.’ (2 Kings 2:23-24)
No bears appeared by the Hawaiian beach, years ago... But this verse can certainly give cause for pause to anyone who might not be inclined to show the utmost respectful to a bald one, especially the prophet among us.”
Lynn, another elder, provided these words of comfort:
“I planted, Apollos watered, but God gave the growth. So neither the one who plants, nor the one who waters is anything, but only God who gives the growth.” (1 Corinthians 3:6-7)
From John and Ginny:
“The kingdom of heaven is like a mustard seed, which a man took and planted in his field. Though it is the smallest of all the seeds, yet when it grows, it is the largest of garden plants and becomes a tree, so that the birds of the air come and perch in it's branches." (Matthew 13:31)
(Sure hope the new crop doesn’t attract the birds!!!!! )
"I am the true vine and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit, he trims clean so that it will be more fruitful." (John 15:1)
(Can’t wait to see ‘the fruit’ that will come from the new crop!”)
From Chris:
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from your Father. And even the hairs of your head are all counted. So do not be afraid; you are of more value than many sparrows.” (Matthew 10.29-10.31)
From Lorna:
“O Jerusalem, cut off your hair, the symbol of your dedication , and throw it away; raise up a lament on the high bare places.” (Jeremiah 7:29)
(Losing hair can be a symbol of dedication so that's a good thing, isn't it?)”
There were many other words of wisdom as well. This is just a representative sampling.
Thanks (I think) to Robin and Diane (both of whom I suspect had a major role in this escapade), to Chris (who procured Chia Taz himself), and to all who contributed their thoughts – both those I’ve quoted, and those I’m still chuckling over.
This morning, as I make my way across the street for the weekly church staff meeting, I find waiting for me... a Chia pet.
It’s the Tazmanian Devil (the Warner Brothers cartoon character). He has, er, a bit more hair than I do these days.
More than that, various friends, colleagues and acquaintances have contributed inspirational thoughts to go with my new Chia Taz. Here are a few selections...
Scott, a ministerial colleague, has done some digging into obscure biblical texts:
Exodus 20:4-6 NSRV (New Scott Revised Version)
“You shall not make for yourself an idol in the form of anything in heaven above or on the earth beneath or in the waters below. You shall not bow down to them or worship them. Even though you may have crafted them from the clay of the earth; though you may have sown seeds in them with anticipation; though they may have grown life-like hair (yea, but for a punk-rocker with hair of green); though you may come to worship them for the miracle of the growth; indeed, they are still only a Chia Pet. You, however, are my child, and I love you more than you can know. Trust in me and I will be with you always.”
Dan, another ministerial colleague, writes:
“Hair today, gone tomorrow.”
Doug, pastor of a nearby church, cites this oddly appropriate scripture passage:
“...we who have this spiritual treasure are like common clay pots, in order to show that the supreme power belongs to God, not to us. We are often troubled, but not crushed; sometimes in doubt, but never in despair; there are many enemies; but we are never without a friend; and though badly hurt at times, we are not destroyed....” (2 Cor 4:6ff , TEV)
Wendy, one of our church's elders, got busy with her concordance, and likewise found this text:
“...or as the soil makes the sprout come up and a garden causes seeds to grow, so the Sovereign Lord will make righteousness and praise spring up before all nations.” (Isaiah 61:11)
Steve, another pastor colleague, contributed this, er, exegesis:
“When I was in college I worked with a fellow camp counselor at a beach camp in Hawaii. After every week’s camp session, we threw one of the counselors into a certain spot in the ocean. But my fellow counselor, Kendall, always eluded attempts to throw him in. On the last day of camp I encouraged the camp kids to pretend that something strange was in the ocean and to call Kendall over to see it. When he got there, I quickly dunked him. A short moment later we saw his hair floating on top of the water. His hand was in a far away place, reaching from under the surface searching for his floating hair. When he emerged from the water we all saw that he was completely bald, except for a few thin strands. The children all cheered and laughed. They called him a ‘bald head.’ They cheered me as their hero. I felt horrible. I had no idea he was wearing a hair piece.
I say all this to set up this passage of scripture:
‘From there Elisha went up to Bethel. As he was walking along the road, some youths came out of the town and jeered at him. "Go on up, you baldhead!" they said. "Go on up, you baldhead!" He turned around, looked at them and called down a curse on them in the name of the Lord. Then two bears came out of the woods and mauled forty-two of the youths.’ (2 Kings 2:23-24)
No bears appeared by the Hawaiian beach, years ago... But this verse can certainly give cause for pause to anyone who might not be inclined to show the utmost respectful to a bald one, especially the prophet among us.”
Lynn, another elder, provided these words of comfort:
“I planted, Apollos watered, but God gave the growth. So neither the one who plants, nor the one who waters is anything, but only God who gives the growth.” (1 Corinthians 3:6-7)
From John and Ginny:
“The kingdom of heaven is like a mustard seed, which a man took and planted in his field. Though it is the smallest of all the seeds, yet when it grows, it is the largest of garden plants and becomes a tree, so that the birds of the air come and perch in it's branches." (Matthew 13:31)
(Sure hope the new crop doesn’t attract the birds!!!!! )
"I am the true vine and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit, he trims clean so that it will be more fruitful." (John 15:1)
(Can’t wait to see ‘the fruit’ that will come from the new crop!”)
From Chris:
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from your Father. And even the hairs of your head are all counted. So do not be afraid; you are of more value than many sparrows.” (Matthew 10.29-10.31)
From Lorna:
“O Jerusalem, cut off your hair, the symbol of your dedication , and throw it away; raise up a lament on the high bare places.” (Jeremiah 7:29)
(Losing hair can be a symbol of dedication so that's a good thing, isn't it?)”
There were many other words of wisdom as well. This is just a representative sampling.
Thanks (I think) to Robin and Diane (both of whom I suspect had a major role in this escapade), to Chris (who procured Chia Taz himself), and to all who contributed their thoughts – both those I’ve quoted, and those I’m still chuckling over.
Wednesday, February 15, 2006
February 15, 2006 - White Cells A-Rising
Late this afternoon, I go for a blood test, and discover to my surprise that my white blood-cell count is way up. My white cells are at 18.5, when the normal range is between 4.5 and 10.5. The number on the report that’s been described to me as my “baby white blood cells” – white cells in the process of being manufactured – seems even higher, compared to normal: it’s 15.3, out of a normal range of between 1.4 and 6.5. All my previous CBCs (complete blood counts) have listed the white cells as between 5 and 8.
This is baffling to me, because I’ve been led to believe that a low white-cell count is the real bugaboo during chemotherapy. When the number of white cells is low, it typically means the immune system is suppressed, and the body is vulnerable to all kinds of infections it could ordinarily fight off on its own. My count today, though, is abnormally high – which would seem to me to suggest either that (1) my body’s issued a general call-to-arms to fight off some infection, or (2) the Neulasta shot I had on Friday has so pumped up my white-cell count that the little critters are popping out all over the place. I’m not feeling ill (other than ordinary post-chemo malaise), and I have no fever, so I have no reason to suspect an infection.
On blood-test days I don’t usually see the doctor, but I do have a brief opportunity today to ask Vanessa, one of the nurses, about the implications of these numbers. She doesn’t seem overly concerned, explaining that the abnormally high number of white cells is likely just a product of the cancer itself.
(White blood cells as seen under an electron microscope)
Still, I can’t help wondering about this number, because I’ve never seen anything like it on my previous reports. I go home and do a little snooping on the web, and quickly discover that I’m out of my element. I can converse fluently in terms like “eschatology” and “hermeneutics” – and could even explain the meaning of “the teleological suspension of the ethical,” if pressed – but when it comes to words like “hemocrit” and “monocyte,” my mind glazes over. Analyzing one’s own CBC is evidently one of those “don’t try this at home” kinds of activities, unless you happen to be a microbiologist.
One website I did find suggested that, when chemotherapy is doing its job fighting lymphoma, the malignant white cells that have been congregating mostly in tumors get dumped into the blood, and often show up in the CBC as though they were normal white cells. If that’s the case, that would seem to be a good thing – for it would mean the chemo is in the process of giving the cancer cells the old heave-ho.
But the bottom line is, I don’t know enough to say one way or the other. Maybe tomorrow I’ll call the doctor’s office and see if I can find out more...
February 14, 2006 - Hearts and Flowers
Today is Valentine’s Day. Plans I made about a week ago swing into action. I’m not always the best at planning ahead for holiday gifts, but this year I knew – based on where I’d be in the chemo cycle – that a last-minute store run would not be an option. So last week, as I was feeling a bit better, I went out and pre-ordered a flower arrangement for Claire, to be delivered to our home. I also picked up a heart-shaped box of chocolates and a card at the drug store, and hid them away.
This morning I present her with the chocolates and the card. She has chocolates and a card to give me, as well. The vase of tulips arrives in the early afternoon, and she’s pleased to receive it, after returning home from some hospice home visits.
The two of us act mildly surprised by our little presents, even though there’s no real surprise. We’ve been married for twenty-five years. Valentines and chocolates have been a feature of our February 14th for all those years, and then some. It would have been infinitely more surprising had either of us failed to give the other a valentine.
Claire has written some wonderful things on her valentine to me. I won’t share them all here – they’re personal, of course – but here’s one line: “The path will get harder before it gets better, but we have an unending well of divine love from which to draw living water – not only to strengthen ourselves, but also our beautiful children.”
I’m thinking, today, that it’s not only me who has the cancer. It’s also our marriage... and our family... even our church community. The malignant cells are limited to my own body, but somehow the malignancy as an abstract concept reaches further, insinuating its way into all my relationships, most especially my own family. I’m sorry Claire and the kids have to go through this with me, but at the same time I’m also glad they’re here for me. We’re fighting this together. I can hardly imagine how I would get through this, without the love and support of family.
“We always give thanks to God for all of you and mention you in our prayers, constantly remembering before our God and Father your work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ” (1 Thessalonians 1:2-3). The Apostle Paul wrote those words to a church community, but they’re words I feel I could address to my own family as well – a different sort of valentine, perhaps, but one that’s so very appropriate this year, considering all that we’re going through together.
Bernie Siegel is a surgeon who’s one of the pioneers of “mind-body medicine” – the holistic approach to treating cancer. In his bestseller, Love, Medicine and Miracles, he makes this rather far-reaching claim:
“I feel that all disease is ultimately related to a lack of love, or to love that is only conditional, for the exhaustion and depression of the immune system thus created leads to physical vulnerability. I also feel that all healing is related to the ability to give and receive unconditional love... I am convinced that unconditional love is the most powerful known stimulant of the immune system. If I told patients to raise their blood levels of immune globulins or killer T cells, no one would know how. But if I can teach them to love themselves and others fully, the same changes happen automatically. The truth is: love heals.” [Love, Medicine and Miracles (Harper, 1986), pp. 180-181.]
I wouldn’t go so far, myself, as to make that sort of global statement, but I do think Siegel’s onto something. There is a mysterious link between wellness and love. I wouldn’t want to encourage sick people to feel they are somehow to blame for their illness, on account of their not having loved or been loved well enough – but it’s true that patients with strong family support systems tend to do better.
Today I give thanks for love that heals.
This morning I present her with the chocolates and the card. She has chocolates and a card to give me, as well. The vase of tulips arrives in the early afternoon, and she’s pleased to receive it, after returning home from some hospice home visits.
The two of us act mildly surprised by our little presents, even though there’s no real surprise. We’ve been married for twenty-five years. Valentines and chocolates have been a feature of our February 14th for all those years, and then some. It would have been infinitely more surprising had either of us failed to give the other a valentine.
Claire has written some wonderful things on her valentine to me. I won’t share them all here – they’re personal, of course – but here’s one line: “The path will get harder before it gets better, but we have an unending well of divine love from which to draw living water – not only to strengthen ourselves, but also our beautiful children.”
I’m thinking, today, that it’s not only me who has the cancer. It’s also our marriage... and our family... even our church community. The malignant cells are limited to my own body, but somehow the malignancy as an abstract concept reaches further, insinuating its way into all my relationships, most especially my own family. I’m sorry Claire and the kids have to go through this with me, but at the same time I’m also glad they’re here for me. We’re fighting this together. I can hardly imagine how I would get through this, without the love and support of family.
“We always give thanks to God for all of you and mention you in our prayers, constantly remembering before our God and Father your work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ” (1 Thessalonians 1:2-3). The Apostle Paul wrote those words to a church community, but they’re words I feel I could address to my own family as well – a different sort of valentine, perhaps, but one that’s so very appropriate this year, considering all that we’re going through together.
Bernie Siegel is a surgeon who’s one of the pioneers of “mind-body medicine” – the holistic approach to treating cancer. In his bestseller, Love, Medicine and Miracles, he makes this rather far-reaching claim:
“I feel that all disease is ultimately related to a lack of love, or to love that is only conditional, for the exhaustion and depression of the immune system thus created leads to physical vulnerability. I also feel that all healing is related to the ability to give and receive unconditional love... I am convinced that unconditional love is the most powerful known stimulant of the immune system. If I told patients to raise their blood levels of immune globulins or killer T cells, no one would know how. But if I can teach them to love themselves and others fully, the same changes happen automatically. The truth is: love heals.” [Love, Medicine and Miracles (Harper, 1986), pp. 180-181.]
I wouldn’t go so far, myself, as to make that sort of global statement, but I do think Siegel’s onto something. There is a mysterious link between wellness and love. I wouldn’t want to encourage sick people to feel they are somehow to blame for their illness, on account of their not having loved or been loved well enough – but it’s true that patients with strong family support systems tend to do better.
Today I give thanks for love that heals.
Monday, February 13, 2006
February 13, 2006 - Healing Prayer
I’m realizing today that the low place I’m in right now is a matter of mental attitude as well as the physical side-effects of the chemotherapy. My tiredness has to do not only with physical fatigue (which is considerable), but also with feeling emotionally drained by this whole experience.
This morning I arise around 9:00, after a night punctured by a three-hour spell of insomnia. As I sit on the edge of the bed, it seems like it’s a huge effort just to pull on my socks. I remark to Claire that it’s the prospect of another gray and formless day, much like the last several, that seems especially debilitating.
I’m feeling depressed today, it’s clear. I felt much the same way yesterday, and the day before that. Now if circumstances in my life were otherwise normal, I might feel alarmed about this. I might be thinking about seeing a counselor, or perhaps asking about anti-depressant medications. Yet the fact is, I’m in the middle of cancer treatment. A certain amount of depression is to be expected, isn’t it?
There are different theories. Some say depression among cancer patients is situational, a response to the life-changes cancer brings. Others suspect a chemical component – that some of the chemo drugs themselves have a depressive effect. Either way, it hardly seems appropriate to run out and seek treatment for situational depression, when the situation itself will surely change in a few days.
Most of us aren’t used to thinking of depression as an illness. The voices of past generations echo around in our heads, judgmentally suggesting it’s some kind of moral failing. I know, from my own experience as a counselor, that one of the hardest things to accomplish in working with depressed people is to ease them through this fundamental shift of perspective: helping them to fully grasp the idea that depression is a medical condition and not a personal failure.
This evening I discover something that truly helps. Our church is beginning a series of twice-monthly healing services, on the second and fourth Monday evenings from 7:30-8:00 p.m., and I walk across the street for the first one of these. The service, ably planned by Robin, is simplicity itself: some prayers, some lit candles, some simple music playing softly over the sanctuary sound system. Only a few people are present – with our Sunday services snowed out yesterday, there were no reminder announcements to spur attendance – but the few who have come out are more than enough. We pray for each other, and offer – to those of us who wish to receive it – the ancient biblical gesture of the laying on of hands. I depart feeling the love of the Christian community, and of God.
Healing is a journey. Tonight I know for certain I’m on it.
Sunday, February 12, 2006
February 12, 2006 - Whiteout
(Point Pleasant Presbyterian Church this morning, from the front porch of the Manse)
This morning the blizzard conditions continue. It seems that today there are other reasons to miss church besides chemotherapy!
Early this morning I’m on the phone to Robin, and – after consulting the latest weather predictions – we make the decision to cancel worship services. We decide who’s going to call which staff member, and we do so. When I call Donna, our church school coordinator, I learn from her husband Bob that their home is without electricity (we’re hoping for their sake the outage won’t last long, because the only other heat they have is from a couple of gas heaters). Claire bundles up and slogs across the snowy street in the dark, to record an announcement on the church answering machine that everything’s been cancelled.
Nothing to do now but wait. The heavy snowfall continues, and is likely to keep up through the afternoon.
I’ve been thinking lately about what a slow process cancer treatment is, and how so much of my life is in a sort of holding pattern right now. The most important dates on my calendar are not classes, meetings or counseling appointments, but medical treatments. I show up for those things with as much diligence and punctuality – if not more – as any other appointment I’ve ever kept.
This morning I swallow my last five, bitter-tasting prednisone tablets, mindfully downing each one with a huge gulp of water so as not to gag. OK, that’s over with, I tell myself. The dregs of chemo treatment #2.
It’s like one of those board games we used to play as children. You move your counter around a sort of winding, circular track, space by space, eventually hoping to break through to the place in the center where you’re home free. In the Chemotherapy Game, though, there are no dice to roll. You don’t dash ahead in irregular spurts – two spaces one turn, six spaces the next. In this game, your counter must pause on each and every square. On the morning and evening of each day, as you arrive at and depart from each space, there are pills to swallow.
There are twenty-one spaces on this game board, one for each day of the three-week chemo cycle. Chemo Day is Space #1. The next four spaces are Prednisone Days (still part of the chemo cocktail, just more spread-out over time than the other drugs). Besides being a Prednisone Day, Space #3 is also a Neulasta shot. Spaces #8, 15 and 21 are blood tests. Certain spaces towards the beginning are colored sickly green for nausea, while the five or six in the home stretch are white for normal. Space #5 is bright orange and decorated with flames: the Prednisone Rush (that’s today; I’ll see if the last cycle’s history repeats itself). Eventually you reach Space #21, passing “Go” and starting the cycle all over again. As I’ve rounded the starting point and begun my second go-round, I’m learning there’s a certain degree of predictability to this game.
Occasionally the game rules require you to draw a card that could introduce a new and unexpected element: a low blood count, perhaps, or an infection, or some other problem. These could influence the way the game goes – whether new medications are introduced, or even whether the chemo dosage or treatment schedule must be altered.
The most important card – even better than “Get Out of Jail Free” from Monopoly – is the “Favorable CT Scan” card. I’ll try my hand at drawing this card just after going round the board three times, and again after the sixth time. In the Chemo Game, you can’t break through to the goal of the game – the “Remission” space at the center of the board – without holding this card in your hand.
For now, though, I’m doggedly circling the board, one space at a time. It’s not a very amusing game, but it sure does hold my attention. Even on a snowy day.
Saturday, February 11, 2006
February 11, 2006 - In the Lee of the Storm
Today’s not such a good day. All the symptoms of post-chemo malaise are here: exhaustion, queasiness, headache, restlessness, lack of appetite. Yesterday, I could feel the downward slide beginning. Today, it’s here in earnest.
A day or so before this point in the last chemo cycle, I had decided to bow out of that coming Sunday’s service. I’d hoped to have the energy to help lead worship that day, and even to preach, but it was not to be. Claire took over for me on that occasion – and by all accounts did a fine job.
This time, I’m under no illusions about my ability to function. Robin’s slated to preach – although, as it turns out, there are other circumstances that could put Claire in the pulpit again.
The reason is a heavy snowstorm – a Nor’easter – that’s already making its arrival. Right now, it’s still just raining outside, but before long the temperature will drop, and we may have as many as 12 inches of the white stuff. If our typical seacoast weather patterns prevail, we’ll probably get considerably less than areas further inland, but right now it’s impossible to say.
I offer Robin the use of a guest room here at the manse, but – as a veteran of the infamous lake-effect snows of Buffalo, New York – she declines, confident she can make it in on her own, as long as the roads have been plowed. If we do experience the worst-case scenario, and the snowplows haven’t made it to her street, then the backup plan is for Claire to walk across the street to the church sanctuary, and lead informal worship for anyone adventurous enough to challenge the drifts.
During my fifteen years here as pastor, we’ve only had to cancel Sunday services once – and that was during a howling blizzard so severe that the New Jersey Governor had ordered all cars to stay off the roads. Even in the worst weather, we generally unlock the doors and see who comes. If it’s just a handful, we become a country church for the day. There’s a wonderful sense of spontaneity and informality at worship on heavy snow days: we’re happy to see those who do trudge through the drifts or pull up in four-wheel-drive vehicles – although we fully understand why others can’t, due to risky travel conditions. Certainly, we’d never want anyone to take any undue risks.
Yet for me, there will be no such party atmosphere. I’m already snowed in, by the effects of the chemo. There's nothing for me to do but wait it out, and trust others to do what I would ordinarily do myself...
Thursday, February 09, 2006
February 9, 2006 - Someone's Watching Over Me
This morning I receive a phone call from Kay, one of the oncology nurses, advising me that the potassium level in my blood is a bit on the low side – I’m at 3.4 and the low end of normal is 3.5. A depressed potassium level is a common side effect of the sort of chemotherapy I’m receiving.
The solution? Eat more bananas and drink more orange juice. There are dietary supplements they can give me, too, but with my numbers not all that far out of whack, they think they can get things back into balance with some minor dietary changes.
This is just another reminder to me of how numbers-driven modern medicine is. My grandfather, Robert Abbe MacKenzie, was a pioneer obstetrician-gynecologist in Asbury Park, New Jersey, and delivered tens of thousands of babies in his time. He used to tell us how, while attending medical school at New York’s Columbia College of Physicians and Surgeons around 1917-1921, he learned how to make mustard plasters. He also learned how to diagnose the position of a baby in its mother’s womb by touch – nowadays most obstetricians wouldn’t know how to do that, because they depend on ultrasound scans. By the time my grandfather was 100 years old and receiving medical treatment himself, there must surely have been a lot that was mysterious to him about how his own doctor made treatment decisions.
I also remember hearing Arnie Lane, a longtime member of our church who was chief administrator of the old Point Pleasant Hospital for decades and lived into his mid-90s, tell of how he began his career in hospital administration. He was hired by a local doctor at the age of 18, while he was still in high school, to administer anesthesia during surgery. There wasn’t much more to it than squeezing a rubber bulb as the doctor instructed him, inflating the patient’s lungs with an air-and-ether mixture and maybe keeping his eye on a gauge or two. When the surgery was over, it was Arnie’s job to go out into the streets of Point Pleasant Beach with a couple of dollars, and hire four strong men to come carry the patient upstairs, from the former dining room of the converted house the doctor used as a hospital, into one of the upstairs bedrooms. It just goes to show how much medicine has changed in just over one human lifetime.
(Actually, even the caption's now a historical artifact; the hospital building was sold and torn down recently.)
As for me, I’m glad someone’s been scrutinizing my blood-test results in order to let me know when my potassium’s down. It’s comforting to know that some perfect stranger is watching over me in that way. It’s also a little creepy: that something so intimately personal as my own blood chemistry is displayed on the computer monitor of some lab technician I’ve never met.
So, I eat a banana this afternoon. Maybe I’ll have a glass of V-8 or orange juice before I go to bed tonight. I’ve got to keep covenant with those kind people who are watching over me.
I’ll bet some of you thought, when you read the title of today’s entry, that it would be all about how God watches over us. Well, it is. I believe God uses all kinds of people, sometimes in ways we don’t even know, to insure that “all things work together for good for those who love God, who are called according to his purpose” (Romans 8:28). I like to think that God’s purpose is for me to survive this thing, to continue my ministry, to continue to be here as a husband and father and friend. If it’s not, well, that’s not what I want – but the promise of faith is that even that, too, would somehow be an example of everything “working together for good,” in ways I can scarcely understand. Someone, indeed, is watching over me.
The solution? Eat more bananas and drink more orange juice. There are dietary supplements they can give me, too, but with my numbers not all that far out of whack, they think they can get things back into balance with some minor dietary changes.
This is just another reminder to me of how numbers-driven modern medicine is. My grandfather, Robert Abbe MacKenzie, was a pioneer obstetrician-gynecologist in Asbury Park, New Jersey, and delivered tens of thousands of babies in his time. He used to tell us how, while attending medical school at New York’s Columbia College of Physicians and Surgeons around 1917-1921, he learned how to make mustard plasters. He also learned how to diagnose the position of a baby in its mother’s womb by touch – nowadays most obstetricians wouldn’t know how to do that, because they depend on ultrasound scans. By the time my grandfather was 100 years old and receiving medical treatment himself, there must surely have been a lot that was mysterious to him about how his own doctor made treatment decisions.
I also remember hearing Arnie Lane, a longtime member of our church who was chief administrator of the old Point Pleasant Hospital for decades and lived into his mid-90s, tell of how he began his career in hospital administration. He was hired by a local doctor at the age of 18, while he was still in high school, to administer anesthesia during surgery. There wasn’t much more to it than squeezing a rubber bulb as the doctor instructed him, inflating the patient’s lungs with an air-and-ether mixture and maybe keeping his eye on a gauge or two. When the surgery was over, it was Arnie’s job to go out into the streets of Point Pleasant Beach with a couple of dollars, and hire four strong men to come carry the patient upstairs, from the former dining room of the converted house the doctor used as a hospital, into one of the upstairs bedrooms. It just goes to show how much medicine has changed in just over one human lifetime.
(Actually, even the caption's now a historical artifact; the hospital building was sold and torn down recently.)
As for me, I’m glad someone’s been scrutinizing my blood-test results in order to let me know when my potassium’s down. It’s comforting to know that some perfect stranger is watching over me in that way. It’s also a little creepy: that something so intimately personal as my own blood chemistry is displayed on the computer monitor of some lab technician I’ve never met.
So, I eat a banana this afternoon. Maybe I’ll have a glass of V-8 or orange juice before I go to bed tonight. I’ve got to keep covenant with those kind people who are watching over me.
I’ll bet some of you thought, when you read the title of today’s entry, that it would be all about how God watches over us. Well, it is. I believe God uses all kinds of people, sometimes in ways we don’t even know, to insure that “all things work together for good for those who love God, who are called according to his purpose” (Romans 8:28). I like to think that God’s purpose is for me to survive this thing, to continue my ministry, to continue to be here as a husband and father and friend. If it’s not, well, that’s not what I want – but the promise of faith is that even that, too, would somehow be an example of everything “working together for good,” in ways I can scarcely understand. Someone, indeed, is watching over me.
February 8, 2006 - Chemo 2
Claire and I arrive at Dr. Lerner’s office at 9:30 a.m. for my second chemo treatment. She sits in on my discussion with the doctor, then leaves me in the chemo nurses’ capable hands for the rest of the day.
The nurses have some difficulty getting the IV needle into my porta-cath, because it’s deeper under the skin than most people’s. After an abortive attempt, they have to try again with a “large needle.” (I’ll have to remember to ask for that next time, so as not to have to go through this trial-and-error process again.) Even so, the pain is about as bad as a hypodermic injection - worse than my routine blood tests (for which they use such a fine needle I can hardly feel it), but still very manageable.
Early in my treatment, I have a wonderful, unexpected visit from Don, our friend who's an NHL survivor and who received his chemo treatments from the same medical group. He stays for 15 minutes or so, and it does help to make the time go faster.
Once the drugs start flowing, I immediately start to feel drowsy. They tell me the intravenous Benadryl is responsible for that. It’s the familiar over-the-counter antihistamine, but in a massive dose – this to minimize the body’s reaction to the Rituxan. I set out some books on the table by the lounge chair, but never open them. Once the Benadryl starts flowing, the drowsiness makes it too hard to concentrate. Instead, I watch TV.
After my first experience three weeks ago, I learned that each of the TVs in the little private rooms they use for chemo infusions has a built-in VCR. So, I’ve come prepared this time with a couple of videos. One of the films I watch is an old favorite of ours, a little South African film called The Gods Must Be Crazy. It’s a wacky and touching comedy about a Bushman (aborigine) from the Kalahari Desert in Africa, who happens to see a Coke bottle fall from the sky, dropped by the pilot of a passing airplane. He doesn’t know where it came from, so when he sees it plop down in the sand near his feet, he assumes it’s a gift from the gods. These people are so remote – subsistence hunter-gatherers – that they have no idea what this thing is. They find it a useful tool for all sorts of purposes. Eventually, the man who found it realizes that the members of their little band are fighting over the Coke bottle so much that he concludes it must be evil. He resolves to go on a long journey to drop it off the edge of the earth, so the gods can have the pesky thing back.
On the way, he encounters civilization, which for him is not a good thing. Through a series of misadventures, he ends up under the care of a rather inept, Crocodile Dundee-type biologist and his native sidekick, and is able to offer his superior stalking and tracking skills to help them rescue some schoolchildren who’ve been kidnapped by some revolutionary guerrilla fighters. There’s a subplot about the shy biologist having a crush on the children’s schoolteacher, and the bushman is able to help with that situation, too. He walks off, at the end, to return to his people. The last we see of him, the cash reward money he has earned is blowing away in the wind - for of what use are these little scraps of paper in his world?
Anyway, it was an interesting experience watching this film, while hooked up to machinery to receive some of the highest of high-tech medicines. Western medicine is certainly effective, but it’s fantastically expensive. I’m grateful to have medical insurance to pick up at least some of the cost. There are still people in the world who live off the land, as the Kalahari bushmen do, and undoubtedly have their own disease remedies. I wonder if cancer is even an issue, in their world?
Claire stops by again around 5:00, and sits with me until I’ve received the last drop. We return home, and I pick at the delicious meat loaf dinner one of our church members brought. I sit on the couch for a while as the now-familiar queasiness and headache intensify, before going to bed.
Tuesday, February 07, 2006
February 7, 2006 - Dreamscape of Doom
One thing I've noticed in recent weeks is that I seem to be having more vivid dreams – or, perhaps I've just been able to remember my dreams better. Claire has told me on numerous occasions that she thinks it odd that I rarely remember my dreams. Unlike me, she has a very vivid dream life, and likes to tell me and others about what she's been experiencing in that liminal, meaning-laden place that is the zone of overlap between sleeping and waking.
This morning I awake with a start at about 6:00 a.m. I've been having an especially vivid nightmare. Somehow it's happened, in my dream, that I've witnessed some kind of crime, and the law-enforcement authorities are calling on me to come testify in court. I become aware that some gangsters know I'm going to testify, and are trying to murder me. I'm taking elaborate precautions to make sure the gangsters won't find me. I have several close calls, escaping them in the nick of time.
Because they know what my car looks like, the police have advised me to rent a car, so the gangsters can't follow me as I drive to the courthouse. I find myself at an odd sort of car-rental place that's actually more like a run-down farm. The car-rental people recommend that I rent an old classic car, a 1930s-era roadster that looks as much like an old-fashioned racing car as anything else. It's parked way out back behind the rental office, in a place overgrown with tall grass.
They send me out back with the keys, and I climb into the driver's seat. I realize, then, that the car hasn't been driven in some time, and there's a closed wooden gate immediately in front of it. I get out and fumble with the numerous, rusty latches that secure this weatherbeaten old gate. I still don't have them all open when I look back over my shoulder and realize there's another old 1930s-era car behind me and to the left, a black sedan.
It's the gangsters – they've evidently been waiting for me. A man and a woman who look sort of like Bonnie and Clyde are sitting in the front seat, and there several others in the back. Their car is slowly, silently inching toward me, through the tall grass. In a moment they'll be alongside me. I'm too far from the rental office to call out for help, and my fingers are still fumbling, in slow motion, with the gate's latches. There's no time now to finish opening the gate, let alone leap back into my car and start it up. It's such an old car, I'm not even sure it would start up. They're going to shoot me, I think to myself, and there's nothing I can do about it!
It's just at that moment that I wake up. Looking around and realizing I'm in my own bedroom, I reassure myself it was only a dream, and feel an immense sense of relief. As I start to drift back to sleep, I'm aware that the dream is still lurking there, unfinished, somewhere in my mind. I feel quite certain that if I allow myself fall back into sleep, the gangsters will get me. Somehow I will myself to stay awake for a few minutes longer, until I feel confident that the last remnants of the dream have dispersed like morning mist.
It's a classic anxiety dream. Tomorrow morning I go for my second of six chemotherapy treatments. I suppose I've been dreading it more than I thought – the exhaustion, the low-level queasiness the anti-nausea drugs can contain but not eliminate, the sense of being on a downward spiral for days, before I slowly start to emerge again. Underneath it all, I suppose, is a fear of death, a fear that the treatments will not shrink the tumors and put me into remission after all.
Somehow the dream has functioned to tell me how I'm really feeling about this, on a subconscious level. It's better, I suppose, to be aware of these feelings than to suppress them. Having this dream is, in some strange way, part of the emotional work of dealing with my disease. Having had it, I can acknowledge to myself that these irrational feelings of dread are there. I can bracket them in my awareness, and place them where they belong. As unpleasant as it was, I feel that the nightmare has taught me something I need to know, something that's hard to put into words.
February 5, 2006 - A Sermon on Samson
The Sunday worship service goes pretty well today. It’s the first time most church members have seen me without my hair or beard. Many people tell me, afterwards, they didn’t recognize me until they heard my voice. The other thing I hear, over and over again, is that without hair or beard, I look "ten years younger." ( I wonder... does that mean I was looking like I was 59 and now am back to looking my age – or does it mean I did look my age, and now I’m a spry 39-year old?)
When I go back to the choir room to lead the choir in a pre-worship prayer, as I often do, Bill, our choir director, gives me one of his typical greetings. Bill’s proud of his German heritage, and often throws German words and phrases around in a jocular manner. It’s part of what he would call his "schtick." This time he hails me by saying, "Greetings, Mein Herr" – but then he realizes what that sounds like in English (mine hair), and he and the choir crack up. It’s good to know we can laugh about all this.
Just for the fun of it, I’ve decided to depart from the lectionary (the list of recommended scripture passages for each Sunday) and preach on the story of Samson. I figured the congregation would all be staring at me and thinking about my hair loss, anyway, so I might as well get some homiletical mileage out of it.
Many people think they know the story of Samson, but the only thing most really know about this biblical strongman is the way Delilah cuts his hair while he sleeps, then hands him over to the Philistines in a weakened condition. Yet there’s a good deal more to the story than that – and, when we look at the tale in its entirety, it turns out Samson is anything but a positive role-model. That’s probably the reason the lectionary editors decided to omit his story from their list – as much as the fifth-grade Sunday School boys may enjoy all the murder and mayhem, Samson does a lot of things that would make Dana Carvey’s "Church Lady" blanch – not the least of which is spending a night in a "house of ill repute" (check it out if you don’t believe me: Judges 16:1).
Preaching on this story is a challenge. It’s a bit of a puzzle why, in the Bible, God continues to back this prideful, hot-tempered, violent character, who seems as much interested in brawling and chasing women as he is in practicing holiness. I understand there are a few Christian motorcycle clubs out there – groups of people who dress and talk like the Hell’s Angels, but who are actually very sincere about witnessing to their faith. I expect ol’ Samson would fit right in with that crowd.
I present his story as a tall tale – and Samson as sort of like a biblical version of a comic-book hero. He’s a larger-than-life figure, to be sure – although what’s truly larger-than-life about his story is God’s dogged determination to stick to the terms of the covenant, no matter how undeserving its current human representative may happen to be.
It’s just another example of how the Bible speaks to us from a very different culture, and how the only way to truly understand its meaning is to somehow get inside that foreign culture.
I feel pretty much back to normal now – just in time for my chemo treatment on Wednesday, which will send me back to square one. There’s something Sisyphean about the cycles of chemotherapy: with great labor we cancer survivors push the stone up to the top of the hill, only to see it roll back down again. We can only trust that there’s progress, silently going on deep inside us as the tumors shrink and wholeness is gradually restored.
When I go back to the choir room to lead the choir in a pre-worship prayer, as I often do, Bill, our choir director, gives me one of his typical greetings. Bill’s proud of his German heritage, and often throws German words and phrases around in a jocular manner. It’s part of what he would call his "schtick." This time he hails me by saying, "Greetings, Mein Herr" – but then he realizes what that sounds like in English (mine hair), and he and the choir crack up. It’s good to know we can laugh about all this.
Just for the fun of it, I’ve decided to depart from the lectionary (the list of recommended scripture passages for each Sunday) and preach on the story of Samson. I figured the congregation would all be staring at me and thinking about my hair loss, anyway, so I might as well get some homiletical mileage out of it.
Many people think they know the story of Samson, but the only thing most really know about this biblical strongman is the way Delilah cuts his hair while he sleeps, then hands him over to the Philistines in a weakened condition. Yet there’s a good deal more to the story than that – and, when we look at the tale in its entirety, it turns out Samson is anything but a positive role-model. That’s probably the reason the lectionary editors decided to omit his story from their list – as much as the fifth-grade Sunday School boys may enjoy all the murder and mayhem, Samson does a lot of things that would make Dana Carvey’s "Church Lady" blanch – not the least of which is spending a night in a "house of ill repute" (check it out if you don’t believe me: Judges 16:1).
Preaching on this story is a challenge. It’s a bit of a puzzle why, in the Bible, God continues to back this prideful, hot-tempered, violent character, who seems as much interested in brawling and chasing women as he is in practicing holiness. I understand there are a few Christian motorcycle clubs out there – groups of people who dress and talk like the Hell’s Angels, but who are actually very sincere about witnessing to their faith. I expect ol’ Samson would fit right in with that crowd.
I present his story as a tall tale – and Samson as sort of like a biblical version of a comic-book hero. He’s a larger-than-life figure, to be sure – although what’s truly larger-than-life about his story is God’s dogged determination to stick to the terms of the covenant, no matter how undeserving its current human representative may happen to be.
It’s just another example of how the Bible speaks to us from a very different culture, and how the only way to truly understand its meaning is to somehow get inside that foreign culture.
I feel pretty much back to normal now – just in time for my chemo treatment on Wednesday, which will send me back to square one. There’s something Sisyphean about the cycles of chemotherapy: with great labor we cancer survivors push the stone up to the top of the hill, only to see it roll back down again. We can only trust that there’s progress, silently going on deep inside us as the tumors shrink and wholeness is gradually restored.
Saturday, February 04, 2006
February 4, 2006 - Mistaken Identity
I haven’t exactly been out and about much in the last day or so – mostly I’ve been hunkered down at home, making phone calls, catching up on various things and working on tomorrow’s sermon – but I’ve had a few interesting reactions from people who have seen my new look.
Our Thursday-morning staff meeting was relocated to a more open area, because one of our Presbyterian Women circles was using the room we usually meet in. That meant several of the circle members walked by our little group on their way to their meeting. I said hello to a few of the women as they passed by, and got some mild “double-take” responses. One woman had little reaction of any kind. I supposed she hadn’t heard me, so I thought nothing of it. Yesterday I received an e-mail from her daughter, who had been speaking with her mother on the phone. She wanted to be sure I knew that her mother – who has vision problems – had no idea who I was. After hearing her friends talk about how different I look, she made the connection, and immediately worried that I might have concluded she’d been ignoring me. I wrote back immediately. Please assure your mother I understand completely: I look so different, even people with normal vision are having problems identifying me!
Yesterday I ran into another church member in the hallway, and nodded hello. She nodded back – but then, as I said something, I could see the look of recognition appear in her face. She took a good, long look at me, then said, “Oh! It’s you!” She apologized for not having recognized me. Not to worry, said I. I’m getting that a lot, these days.
Some friends and family members – both those who have seen me in person, and those who have viewed the “before and after” photos online – have remarked on how young I look with no hair or beard. I find that hard to believe, for some reason. I associate baldness with aging, so “younger” is not exactly the word I would choose – though maybe a beard has an aging effect as well, so losing it makes me appear younger. It’s hard to say. I’ve had my beard for so long, it’s become part of my self-image. It’s a bit disconcerting, after all that time, to look in the mirror and see a virtual stranger looking back!
Going through some cards in my wallet, I glance at my driver’s license. I wonder what’s going to happen, should I need to show I.D. during this chemotherapy season. I don’t suppose most chemo patients, losing the hair on their heads, have a huge problem with identification – though when the beard is added to (or, rather, subtracted from) the equation, it’s a near-total change. If I should have cause to board a plane before my hair grows back, will I be pulled aside for interrogation as a Homeland Security threat?
Tomorrow’s Sunday. I’ll be leading worship for the first time with no hair. A part of me is wondering if, after donning my pulpit robe, I’ll look a little like Uncle Fester on the old Addams Family TV show. Oh, well. We’ll see what tomorrow brings. Maybe I should stick a light bulb in my mouth...
Thursday, February 02, 2006
February 2, 2006 - My New Look
This morning I wake up and look at myself in the bathroom mirror. I'm feeling good enough to go to our church's weekly Men's Breakfast at the OB Diner, but the question is: will my beard go with me?
I pull gently on the beard. A few of the hairs come out. That's it, I say to myself, reaching for the new electric razor Claire just bought me (I've been instructed to avoid conventional razors, in case my blood platelet level dips, leaving me at risk for bleeding). The electric razor has a sideburn-trimmer attachment, and I use that to buzz off my beard and moustache – much as Jim the barber did with my head hair yesterday. The fine shaving with the electric razor that follows isn't as painful as I thought it might be. When it's over, I run my fingers over a chin that hasn't been clean-shaven for 23 years. (I'm a creature of habit, what can I say?)
A little later I drive over to the diner, and take my place at our usual table. The dozen or so men who go to this breakfast, most of them retired, sit in exactly the same seats every week. (I guess they're creatures of habit, too.) The way to really rile this group up is to sit in a different place. Apparently they've never considered this seating arrangement's chilling effect on newcomers, but then they haven't had a newcomer in a long while, so I don't suppose it much matters. I consider taking a different seat myself – to go with my new look – but then think better of it. I sit down in my accustomed place, and introduce myself as the new pastor. That breaks the ice a bit. I find it good to be there. Some of these men have faced some major health problems themselves, so they're very supportive. Besides, it just feels good to be out, after all those days spent in the house.
Today is Groundhog Day. They say Punxsutawney Phil, the famous weather-predicting rodent, waddled out of his burrow this morning and saw his shadow – meaning six more weeks of winter.
When it comes right down to it, of course, Phil is more of an entertainer than he is a meteorologist. Every February 2nd he's good for a newspaper headline or two. Yet there's a part of us that continues to be fascinated with this furry beast's legendary ability to predict the future.
What if we could know for sure what the next six weeks are going to be like? How would we live our lives differently, if we did know?
One strange thing about a chemotherapy regimen is that it allows patients to know more than most people do about what their immediate future's going to be like. This morning I sit down with the church staff for our weekly meeting. As usual, we all get out our calendars and PDAs. Every third Wednesday in my Palm Treo PDA's calendar is now blocked out for each of my upcoming chemo treatments. More than that, I now know that – based on my first treatment experience – I'd better not plan anything for the 5 or 6 days immediately following Chemo Day. As for the next week or so after that, it's sort of a gray area. The third week, I should be home free.
It's an odd feeling, to look ahead on the calendar and plot out the days when I'm going to be sick. But that's what the artificially-induced sickness of chemotherapy allows you to do.
Back home in the early afternoon, I greet Ania and Cory as they come home from school. Both are very interested indeed to see what I really look like under that beard. I prevail upon Ania to take a few photos.
Studying the contours of my face, Ania's especially interested to see something of my brothers Jim and Dave. I've always thought I look more like Dave than Jim, but – now that the beard is gone – I can definitely see some hints of Jim as well, especially around the mouth and jaw. Genes will out, as they say...
(left to right - Jim, Carl, Dave - August, 2005)
I pull gently on the beard. A few of the hairs come out. That's it, I say to myself, reaching for the new electric razor Claire just bought me (I've been instructed to avoid conventional razors, in case my blood platelet level dips, leaving me at risk for bleeding). The electric razor has a sideburn-trimmer attachment, and I use that to buzz off my beard and moustache – much as Jim the barber did with my head hair yesterday. The fine shaving with the electric razor that follows isn't as painful as I thought it might be. When it's over, I run my fingers over a chin that hasn't been clean-shaven for 23 years. (I'm a creature of habit, what can I say?)
A little later I drive over to the diner, and take my place at our usual table. The dozen or so men who go to this breakfast, most of them retired, sit in exactly the same seats every week. (I guess they're creatures of habit, too.) The way to really rile this group up is to sit in a different place. Apparently they've never considered this seating arrangement's chilling effect on newcomers, but then they haven't had a newcomer in a long while, so I don't suppose it much matters. I consider taking a different seat myself – to go with my new look – but then think better of it. I sit down in my accustomed place, and introduce myself as the new pastor. That breaks the ice a bit. I find it good to be there. Some of these men have faced some major health problems themselves, so they're very supportive. Besides, it just feels good to be out, after all those days spent in the house.
Today is Groundhog Day. They say Punxsutawney Phil, the famous weather-predicting rodent, waddled out of his burrow this morning and saw his shadow – meaning six more weeks of winter.
When it comes right down to it, of course, Phil is more of an entertainer than he is a meteorologist. Every February 2nd he's good for a newspaper headline or two. Yet there's a part of us that continues to be fascinated with this furry beast's legendary ability to predict the future.
What if we could know for sure what the next six weeks are going to be like? How would we live our lives differently, if we did know?
One strange thing about a chemotherapy regimen is that it allows patients to know more than most people do about what their immediate future's going to be like. This morning I sit down with the church staff for our weekly meeting. As usual, we all get out our calendars and PDAs. Every third Wednesday in my Palm Treo PDA's calendar is now blocked out for each of my upcoming chemo treatments. More than that, I now know that – based on my first treatment experience – I'd better not plan anything for the 5 or 6 days immediately following Chemo Day. As for the next week or so after that, it's sort of a gray area. The third week, I should be home free.
It's an odd feeling, to look ahead on the calendar and plot out the days when I'm going to be sick. But that's what the artificially-induced sickness of chemotherapy allows you to do.
Back home in the early afternoon, I greet Ania and Cory as they come home from school. Both are very interested indeed to see what I really look like under that beard. I prevail upon Ania to take a few photos.
Studying the contours of my face, Ania's especially interested to see something of my brothers Jim and Dave. I've always thought I look more like Dave than Jim, but – now that the beard is gone – I can definitely see some hints of Jim as well, especially around the mouth and jaw. Genes will out, as they say...
(left to right - Jim, Carl, Dave - August, 2005)
Subscribe to:
Posts (Atom)