Recent photo of my parents in my office

Recent photo of my parents in my office

June 21, 2007

Health Care Update 6/21/07

Life has been so busy I haven't had time to update this blog for a couple days. Here's a brief report on the state of my health at this point. I have a list of other items in mind to write about from a more personal and spiritual level, but at least this effort will keep you up to date on how I'm doing these days.

First of all, thank you for the incredible support and prayers we are receiving. So many of you have given us time, meals, child care, transportation, gifts towards medications, special massage treatments and groceries -- we are quite overwhelmed. We are also amazed at how God has raised up prayer for us through people around the world that we don't know. I told Margie yesterday that discovering how loved one actually is can be quite flattering. I must be guarded against the narcissistic danger of generating a health crisis in order to confirm it! (Lord, have mercy!) On the contrary, thank the Lord that we are receiving just what we need for each day.

More seriously, we are indeed aware of the fact that we are being carried through by prayers and intercessions that we do not deserve but by grace, and that this period of life is another in which we are refined by how we deal with suffering day by day. So in that regard, it is remarkable how functional and energetic I have been able to remain. Radiation is never fun, but this round is also considerably less stressful than the 39 days I went through post-brain surgery in 2004. (I'll write about that sometime soon.) One of the ways we have been led to face each day is to begin with thanksgiving and praise. Charlotte and Josiah will rarely let me leave for work without asking for "Luia" -- Josiah's word for my playing a song with "Alleluia" in it on the piano, at which point he dances around the room with glee. What a gift of hope and life that is!

These days, I have been driving to Naperville in the midst of my workday, and lying down on the table for a quick (15-20 minute) procedure of radiation. The radiation itself targets three areas -- one in my upper spine, from C2 or so down to about T3 (a major target). The next one is a bit further down, aimed mostly at T7, and the final one penetrates my ribcage on the left to hit a lesion that was pressing through the pleura of my lung, making breathing more difficult (I'm not sure which rib this aims for). Each treatment session, or "fraction" (the correct term -- I mistakenly said "fracture" the other day, and am so glad to know that's NOT what I'm getting!!), takes only a matter of seconds, but the positioning of my body on the table takes more time. Then I go back to work to finish a full day.

Early on, one of the painful features of treatment was the requirement that I hold my hands above my head so that they'd be out of range of radiation. My right arm has lost some muscular function since I broke my shoulder in 2005, so keeping it still was difficult. But I've adjusted to that now. At this point it hardly hurts.

Insofar as my daily activities go, I'm aware of how overstress or expending undue energy can result in pain later on. For example, I can pick up a heavy item without immediate consequence, but a day or so later, I'm aware that I stepped out of my limits. At the same time, I've learned that I can also manage more weight than I could before beginning treatment. This seems to fulfill the expectation of the doctors, who told me that radiation should eliminate pressure from some parts of the spinal nerve.

Here, then are matters for praise and thanksgiving:

1) My breathing is much better on the left side. I can say that I don't notice the degree of limitation that I did prior to starting radiation.
2) My left arm and fingertips are less tingly than when I began, though they aren't as fully responsive and sensitive as they were. This is a matter for ongoing prayer.
3) The side-effects of the treatment are far less than predicted. I have not needed to take pepsid to protect my esophagus, nor anything for pain beyond acetaminophen. I have been guzzling liquid Aloe Vera juice, and it (along with other natural products) seems to have eliminated the predicted grovelliness of my larynx and loss of my voice (at least so far!) This is a great matter of praise and intercession, as I am scheduled next week to be leading worship at a Pastoral Care Ministries conference. Pray that my voice will continue to function during the last week of radiation.
4) I have much more freedom in getting up and out of bed without feeling shafts of pain. I can rest well, and move about without as many surprise moments of stabbing pain.
5) Finally, my ongoing ability to be active and engaged in meeting goals and special projects is undiminished at this point. Thanks be to God for all of these things.

As I mentioned, next week culminates in the conclusion of several important matters: the end of our fiscal year at work; the end of a week of ministry; and the end of the radiation cycle. After that, many uncertain challenges open up.. We will need to have a scan that evaluates the effectiveness of the radiation. Then we will need to consider prayerfully the doctors' proposal for further treatment, which we expect will be for chemotherapy. I am ambivalent about chemotherapy, especially since the medications we would be given would almost certainly be experimental, and would introduce an enormous amount of uncertainty into my body. There are many ways to approach the challenge of dealing with cancer, and we are crying out to the Lord for wisdom in discerning what to do.

As a closing example of how prayers like this have been answered, I want to share one that occurred just at the end of May. Through my parent's church connections in Brazil, a woman in Hong Kong knew of a special Chinese natural anti-cancer medication, derived from herbal products, approved by the Chinese counterpart of our FDA, studied over an 8-year clinical trial, and completely compatible with both radiation and chemotherapy without side effects. This product isn't available in the US, and we wouldn't have had any way of even exploring it as an option apart from the generosity of this family. The treatment was shown to have extended the life span of patients with terminal cancer, reduced their pain substantially, strengthened healthy body cells to fight invasive cancerous ones, and numerous other benefits.

On Memorial Day, I was standing in the yard, getting Charlotte into the car to go on some errands, when the US Postal Service pulled up with a box for me from Hong Kong. I was surprised to see a delivery arrive on a holiday, but the driver told me that there were always special delivery items that got out even on holidays, and that she had to work for a couple hours even then. So, by virtue of my simply being present at the right time on the lawn, I was able to sign for a delivery of an unsolicited gift for the benefit of my health. What could I say but "Thank you, Lord!" Margie and I had cried out for wisdom about what to take in advance of beginning the radiation, and what message could have been clearer than, "Here is a box of completely safe (and highly expensive, it appears) herbal anti-cancer tablets from China, delivered to you on the day when we remember the death of our national heroes. Start taking it now."

How could I do otherwise, and then simply marvel at the grace and plan of God? And how could I ever distrust such a loving provider as the future unfolds?

May this bless all of you, as all of your prayers have blessed us.

With love,

John (& Margie, who is falling asleep right now, I'm sure!)

June 19, 2007

Energy, Relaxation, and Forgiveness

Today's weather was beautiful, and I somehow felt full of energy for work and activity. I felt far less pain today, and was able to accomplish many goals at work. And there are indeed many projects to accomplish there. I often refer to my desk as an archaeological dig -- if I simply lift up a few pages of paper, I'm reminded of some pending activity from last fall that could easily eat up half an afternoon! The context of a library itself is a vulnerable place for someone who has problems prioritizing the most important things. How easy it is to see the potential historic, or unique, or interconnected value of some bit of publication that some future scholar might find intriguing, and therefore worthy of preservation. And despite the occasional truth of that instinct, it must be balanced with the Ecclesiastical reminder that "of the making of many books there is no end, and much study is weariness of the flesh."

I was thinking about that this week when blogging. One of the reasons that a discipline of writing based on one's experience and reflection appears worthy to me is that it helps to pull me just a bit out of the introspection of academia. In a context where research is divorced from the concept of wisdom, one of the highest values associated with publication is comprehensiveness. While reading the great works of others is invaluable and expressive of humility, it can also become an indiscriminate search for completion that I think reveals a lack of understanding of the transcendent. In reality, we as believers must recognize how little we know, how fleeting is our time on earth, and how true wisdom, especially in the interpretation of research, only comes from above. It is in listening to the Word of God, the voice of the Holy Spirit, and in lifting up our hearts in worship that we gain a true sense of what is important or meaningful. Think of it this way: how many great books did the Desert Fathers read? How much research did John the Apostle do before writing his Gospel?

Of course, I'm not promoting ignorance, nor associationg some form of grandiosity with isolation. But I'm troubled by the fact that one's life can become easily entrapped in details, while missing the things of greatest worth. I can remember growing up with many more hymns that dealt with the theme of death, for instance, than are popular nowadays. And these were not morbid themes. On the contrary, they served as reminders that this world is transient, that our lives will end.

As our society has grown more prosperous, it is all the more obsessed with materialism and consumerism, and, it seems to me, less joyous. I live in an area where houses are regularly upgraded by remodeling projects into virtual mansions, and some of them are indeed beautiful. I realize I'll never own one of those ;-), but I'm consoled by the presumptuousness of many of them -- I wouldn't want one anyway, I think (or at least, pretend to think!)

Other developments are tearing up the plains of Illinois and designing blocks of housing strips that militate against community and enforce mandatory vehicular travel to another strip of nationally-syndicated businesses in order simply to bite into the food chain or find a clothing supply center -- UGH! All is the same, there are no churches, no centers of social gathering, and I grieve for the isolation and deprivation of the children and families that live there.

But I am vulnerable in other ways. I can become enamored with my agenda and my control, and fail to take the time to re-focus upwards. And that's what I had to confess yesterday as I sped down the road from Wheaton to Naperville, and arrived just in time for another radiation session. On Sunday, I had received a wonderful massage that enabled me to relax and breathe more deeply down my spine. As I laid down again on the radiation table, the though occured to me that if I relaxed as I felt newly enabled to do, I just might displace the target of the planned rays. What if the wrong cells were attacked?

I remained still, just as instructed, just as I knew the therapists wanted me to do. But when it came to an end, I raised the question. "What if I were to relax on the table and shift slightly? Would you be able to track the internal locations where you are radiating me in a case like that?"

Not a word from any of the three women in the room. I felt as if I had raised a forbidden question. I probed a bit more. "I mean, I just felt like I could have relaxed a bit, but it might have shifted my back."

One of the therapists bit back a bit acerbically. "That's why we tell you NOT to move while you're on the table. We are aiming for EXACTLY the right spots, and you musn't move."

Then my heart flared up. Uh-oh. A bit of human defensive anger? I shot back. "I DID NOT move while I was lying there. I simply want to raise the question. Isn't it possible that something in my body could have shifted so that the radiation targets different spots than it was designed to do?"

Another therapist chimed in: "You're going to be scanned tomorrow, but everything should be fine." I walked out, trying to explain: "I have a great respect for traditional medicine, but I also have some serious questions about it..."

As I left with some residual hostility to the whole enterprise whirling in my heart, I realized that I had to see things from the point of view of these women. What must it be like to have to administer radiation to cancer patients on a daily basis, many of whom are depressed, already expecting death, without hope of heaven or the incredible encouragement and support that I receive? How must it feel for the technicians to have a patient imply that they were doing something intentionally damaging? I felt grieved for making their day harder, and vowed to apologize and make specific efforts to reconcile with them later. And -- I thought -- they could also have responded better to my questions by simply saying, "Wow, I'm sure those are difficult things to struggle with. You should definitely ask your doctor about that."

Well, the woman who seemed most acerbic wasn't there today. Maybe tomorrow (there are only seven therapists who do this work, and I have eight more chances to bless her and win her favor). But today I got to work on a different discipline of patience while in the midst of traffic. After having successfully survived a much more peaceful radiation session, I got to wait for 15 (fifteen -- that is XV, 0:15, get it?) minutes of absolutely clogged, virtually immobile traffic in getting back to my office! What are those road reconstructions doing for us all, anyway? I, on the other hand, could have accomplished so much more good by tackling the details of the library world from my desk! Ai-ai-ai. Sounds like I have to take time for some peaceful listening to the Lord, huh? Apparently I still have to learn a bit more about letting go of control and using my strength for "the most important tasks".

OK -- I will. "Into thy hands I commend my spirit, O Lord, O God of truth."

Thank you for your forgiveness, and for all the ways you want to shape me through this experience. And thank you for the humorous ways you continue to expose my weaknesses. Praise you for the beauty and joy of each day, and for the energy to keep active and outwardly focused.

Amen.

June 17, 2007

A Blessed Weekend

Margie and I were given a great privilege this weekend to take a retreat together. I left work early (after Friday radiation), and headed northward with her to Woodstock, IL. There is a Catholic retreat center there that has quiet rooms with no TV or computer. We dropped off our overnight belongings, and went into town for a meal. Woodstock happens to be the village where the film Groundhog Day was made (thus were we informed by the welcoming attendee at the retreat center!) So we had a laugh remembering the humor of that old Bill Murray story, and located a great French Creperie on the square for dinner. Tired, releasing tension and the burdens of our ongoing challenges, we went back to the retreat center for bed.

What a great opportunity simply to sleep for nearly 10 hours. My right shoulder and side were in sharp pain, but after a night of sleep and prayerful meditation, I awakened refreshed and energized. We had breakfast, and returned to pick up Josiah at his grandparents' place (my in-laws') and Charlotte from the home of our friends the Kruses. It was Charlotte's first night-out, and she wasn't that enthusiastic about leaving, so we felt relieved at not having left either child in distress. And great thanks to those who hosted, funded, and blessed us to go.

That evening, we had another privilege, as we went to see a production of Dorothy Sayers' novel Gaudy Night, performed as the conclusion of a conference on Sayers being hosted by Wheaton College's Wade Center. The play was well-directed, and somehow the privilege of being outwardly-directed in the midst of a potentially morose time becomes highly rejuvenating. I do have to be careful, though. On the drive back from Woodstock, I find myself using the vehicle as an outlet for the energy I still wish I could exert physically. This means plunging to the front of the line whenever possible, bypassing leisurely drivers (who are driving the speed limit -- of all things! -- in the left lane), counting it a great privilege to have anticipated which lane was likely to move ahead more quickly given the probability of who was going to make a left turn, etc., etc.

As we approach Margie's parents' place, I see the bike trail along which I had last approached their home, prior to the seizures in 2005 that essentially ended by dreams of biking long distances. I dream of doing it again, I hope that perhaps I can, I fantasize that I could do it even now, simply by willing it to be. But I am more sobered by reality these days, and I know how cautious I must be, and I recognize that my "drivenness" in so many ways reflects a lack of stillness and focus on the call of God.

As I return home with Margie after the play, I am reminded of the fragility of my body. It still hurts to get up too quickly into bed, or to pick up a heavy item (including our children!) Elevating my arm to pull dishes from the dishwasher to the cabinet can be painful. But I sleep well, and we are full of thanks for what we have been given.

Sunday -- a blessed service of worship. It is Father's Day, and as I hear the music of the younger musicians who have taken over most of my responsibilities at Church of the Resurrection, I am moved by their love for the Lord, the stylistic beauty and simplicity of many of their musical choices, their willingness to bring old texts to new life -- values that I care about passionately. What a freedom to rely on the leadership of others.

I suppose that theme should bring me to the end of this entry. It became clear to me in the night recently when I felt wakeful, and went out into the living room to lie on the floor with my feet up on the couch, stretching my back, and listening for the voice of the Lord and meditating on the Scripture. During times like these, it feels as though I'm being massaged by holy, angelic presences. As I release the pain in my body, I sense the Lord bringing to my mind some areas of past sin or mistrust that I confess. After that, I experience a release of peace --

Peace, peace, wonderful peace, coming down from the Father above; sweep over my spirit forever, I pray, in fathomless billows of love.

And I hear the word of the Lord: "Do not strive to do more than you can do. Simply rely on me, obey me, and trust me to accomplish through you all that you should do."

Then I realize how poorly I have learned that lesson for most of my life. Effort and engagement is one thing; continuous drivenness and activism emerging from the sense that one's productivity is being measured by an incomparable perfectionism is deadly. It has caused me to approach the evil of the man given the one talent. In Jesus' parable, he measures himself by his own standards, believes that God is unjust in his distribution of chances, and decides in advance that nothing he ever does will measure up. "I knew you were a hard man. So, here you have your gift back."

How often my frantic escapes (even in driving or biking!) have emerged from the fear of risking investment in more important things that just might not work out. But what pride and unbelief this is. I hadn't seen it that way as clearly before. What autonomous rebellion I have shown in determining my own identity rather in submitting my human imperfection to the Lord for his use. How did I ever imagine I could accomplish anything worthy on my own anyhow? It takes sickness, disease, an encounter with mortality to be brought face to face with the delusion of one's own control. God, be merciful to me, a sinner.

But then, he is. This is part of the lesson of suffering. I come out of this weekend a bit less anxious, a bit less tense, a bit more still. I am just a little better equipped to give, to submit, to be used, to release control. I am captured by God's love -- the love that would privilege me to partake in the suffering of Christ in a quite tiny way -- thereby yielding the fruit that he thinks worthy, even if it seems laden with imperfection to me.

Glory be to the Father, to the Son, and to the Holy Spirit, as it was in the beginning, is now, and forever. Amen

June 14, 2007

Another Day of Treatment

A quick update: I drove myself to the hospital today for the third treatment. On the way, I got some Aloe Vera juice to drink, since my larynx has already begun to be a bit more raspy. I'm also taking some wonderful natural herbs and medications that have been given to me.

The radiation is going fine otherwise. Lying still is less painful, I think I sense an ease in breathing, and my shoulders are not in misery. I did sense a caution in my left hip (the area where the femural neck is eroded). I go tomorrow morning to see the osteopathic surgeon. He is to assess quickly whether a rod to sustain the bone would be better than attempting radiate it. At his call, the neuro-oncologist will decide whether to radiate or not. She seems to favor the surgery option, which would probably happen quickly. She claims that recovery time is short. I'd love to believe that.

Thanks be to God, I continue to have such fun doing projects at work. I'm energetic and generally focused, and it seems as though I've been encountering just the people I need to see at the right time. Praise the Lord for the ordering of our days!

I have also had some wonderful meditations in the night. I sometimes awaken and have a two-hour period of alertness. I try to lie still and focus on the Lord, listen to him, and let him touch those places in my body and soul that need healing. It is amazing to me how connected the two are.

Take an example from something I wrote in an earlier post concerning the relation between the body and the soul. I've been reflecting on whether I should view this cancer as an enemy to be "killed" or "destroyed." In some ways, it is certainly that. It is an invasive perversion of the intended design of my human form, a corrupt evidence of fallen erosion, the curse of death, the evil that Jesus came to bear and carry in his own body. But how, in light of my union with Christ, should I think of this cancer?

I've been struck by the way that the Lord carried our sins and the curse of death. One of my night-time meditations is the seven last words of Christ on the cross. You'll remember one of the first: "Father, forgive them, for they know not what they do." Is it possible, even conceivable, that the Son of God himself could have prayed an unanswered prayer? Could the one who raised others from the dead and commanded demons to flee have been resisted by the Father when he interceded for their forgiveness? I know that Jesus had to bear the cup that his Father gave him, and he submitted to that despite his plea to have it foregone. But for those who crucified him, I am inclined to believe that they were some of the ones who later repented at the day of Pentecost for their participation in his death, and that Jesus's intentions for them were fulfilled.

Applying that to my struggle with cancer, I think that the medical approach to "destroying cells" through radiation and chemotherapy is somewhat analogous to a just war theory of public life. There is a time when attack against evil and protection of innocent life is an essential priority, I believe, and I am thankful for those who are so trained. At the same time, there is a form of ministry that I think "modern" medicine misses. It's the recognition that the body itself is in need of redemption, healing, and recovery. It's a form of discipline and correction that would re-establish proper order within the body, rather than a matter of simply eliminating "bad" parts.

So, in that regard, I am amazed at how when I lie on the floor at night and become aware of the intercession of the saints (you all!), and the voice of the Lord, and then when the walls come down in areas of my thoughts and memories where I sinned against Him or mistrusted Him, or when I drove myself too hard out of pride and desire, or when I failed to obey -- I receive a release of tension, a washing of His forgiveness (I didn't know what I did -- I crucified Him, also!) and I'm so blessed with His gift of Himself to me, and reassured of His eternal love, that in some mysterious way, my body is strengthened. Healthy energy is released to eliminate those distorted cells, to rectify the bent over, to lift up the downtrodden. And all of this differs from the idea that I sometimes perceive from a surgeon who is more invested in a modified version of amputation. Again -- I think we need both, but the restorative recovery that I believe God wants us to find through prayer extends beyond the limits of scientific materialism.

May this somewhat intuitive ramble begin to take greater form, and somehow bless some of you. It helps me to verbalize it a bit. Come, Holy Spirit, and teach us to pray for healing.

Blessings,

John

June 13, 2007

A Foundation in Faith

I have had a few instances of words from the Lord that simply "dropped out of the sky." By that I mean, that I wasn't expecting these "communications," nor was I consciously seeking them. The two that come most to mind now occurred in my dating relationship with Margie. As many of you know, we had a dating relationship that was divided into two periods: "Act I" and "Act II," as Margie likes to say. The night when we broke up (end of Act I), I heard the Lord say, "Give it two years." I let that go as an imaginary delusion when Margie fell in love with someone else, and even more when I apologized to her for my mishandling of our first romance. At that time, she told me that she forgave me, but never imagined us getting back together (OUCH!)

I accepted that decision, and began thinking of dating others, all the while aware of my own responsibility for having failed to court Margie well. I was greatly helped by an essay in First Things by Leon and Amy Kass that applied Erasmus's Colloquy on Courtship to the situation of current youth. Leon and Amy are professors at the University of Chicago, and Leon served on the President's Task Force on Bioethics. I highly recommend the essay. It definitely made me aware of how differently I needed to approach any future commitment to dating or marriage, and particularly convicted me of how self-indulgent and protective I had been.
http://www.firstthings.com/article.php3?id_article=3213&var_recherche=proposing+marriage
But in those days of 1999, I sensed that things were changing. Margie attended a talk I gave on "Hope" at a Redeemed Lives ministry. She left me a voice mail message. She invited me (through her best friend) to attend her birthday party (what was going on there???) I began to get the feeling that we could possibly have another chance, but hardly dared to try.

One Sunday morning in October, I looked across the sanctuary of our church and heard another one of those divine messages drop out of the sky saying, "Fear not, for I have given her to you." The most remarkable aspect of these words was how simple and unsolicited they were, yet how full of grace and love.

That evening, I had planned to go to a movie with Bob and Ita Fischer. Ita let me know that there were two other couples that might join us, and that Margie Clark might come along. That struck me as highly strange. What message was she trying to send? The movie was "Music of the Heart" with Meryl Streep, and as I came to sit down, there was a seat empty next to Margie. Ita invited me to the end of the group in the center of the theater, but I asked if I might simply sit in the seat next to Margie. When Margie said, "Oh, yes, I'd love it," my mouth nearly dropped. I considered it significant that she didn't opt to say "It's a free country, so sit where you want." But no. The entire movie was an experience of pleasure, not only for the quality of the story, but for the sense that a relational connection was afoot.

Margie went to a party, I went home, but I couldn't escape the need to call her. I left her a casual message, telling her that I wanted to ask her a question. What a shock when she called me back that same night at 10:30 pm. I took the jump and said, "Margie, I have noticed that you have been more open to being together in social settings recently, and I wondered what that might mean" -- (but careful not to stop at that point, I proceeded to say) -- "because I would like to date you again."

Margie paused for a moment, and replied, "The only thing I can say is, I'm open." At that point, I exploded in a ten-minute shout of joy. At home alone with her on the telephone, I screamed her name into the telephone with deafening exuberance. I couldn't believe it. I assured her that I would call back, and did so at 7:30 the next day.

All of this story is really prefatory to another one related to my current illness. I am not inclined to keeping track of dates and times. I never used a calendar in college. I operate very open-endedly, and it takes discipline for me to record events. But we have close friends who keep careful watch and have an intuitive sense of dates. What happened on that evening in October was an incredible example to me of divine providence. Margie and I had broken up on October 30, 1997. We attended that movie on October 31, 1999, and were married on October 14, 2000. I am still moved to tears when I look back on that (seemingly) casual promise from God, "Give it two years" and I see that he fulfilled that word to me to the day. I could not have orchestrated that. It laid a foundation in me for future faith. I'll write more about that later.

Blessings to all,

John

June 12, 2007

Actual Start of Radiation

Surprise -- on Monday, the hospital called to ask us to arrive early -- 11:30 instead of 12:15. Margie and I drove to Naperville to start the radiation process. We arrived at about 11:26, but within 5 minutes, were informed that the computer system had crashed. By 12:30 or so, we had been released to return today (Tuesday). I joked on the way out that perhaps they would comment today, "Now, why are we radiating this guy after all? I don't see anything that needs it, do you?" So humor sustained the entire day yesterday.

But not today -- driving for our noon appointment I confess that I was a bit irritated and pesky. I had had a productive morning at the library, and having to leave for this treatment was more disruptive than I wanted to accept, so I found myself taking my frustration out on the traffic density caused by road work on literally every street we use to get from Wheaton to Naperville. Major highway construction can be tolerated, but why does every suburb in our area seem to be replacing the curbside crossings with red rumble surfaces, requiring the traffic to shut down to one lane?

Oh, well, as you can see, this was not one of my more sanctified moments, which Margie let me know. After I confessed my weaknesses, she dropped me off to be taken directly to the radiation area. Today they marked my body with the exact permanent "tatoos" that they will use for aiming the radiation, and conducted a final scan to make sure all was in position. The doctor on call was approving of all three positions, so the radiation began. Each fraction is only a matter of seconds, but the positioning and labelling took about 45 minutes. Subsequent treatments should be much shorter (half the time, I heard).

Pain remains this evening, probably due to the challenge of keeping my right arm extended over my head in perfect calm while on the radiation table. Since I broke my right shoulder in 2005, I have never regained mobility in that area, and tremble with atrophied muscles there, and when I'm forced to elevate my arm, I feel a constant sense of pain and discomfort. But I was able to use the time to pray and to simply relax into the pain. The procedure went as planned, and I worked out the schedule with the hospital for the remaining 13 fractions (reduced from the initial 15 to 14).

In terms of how I'm feeling, I notice back pain, continued numbness in my left thumb and along the tibia of my left arm. This is likely emanating from some compressed nerves in the cervical bones of the spine, that are being pressed upon by tumors/lesions. By radiating these, they hope to stop the decay of the bone and to allow the nerve to heal. Pray toward that end. I'm also taking some steriods to help that anti-inflammatory process along.

Thanks to the many of you who are walking with us through this time of trial. I have a post coming concerning some of the promises of God, but this is definitely a day-by-day form of submission to the will and meaning that God has for our lives. May we be faithful to listen carefully to his voice.

June 9, 2007

Thanks for Life Itself (and all Your Support!)

I must head to bed on Saturday night, but I want to make note of how richly I have been aware of the prayers and support of literally thousands of people. I hear daily of people praying for our family who may not even know us. That is humbling, and also produces a celebrative awareness in me of our union with the entire worshipping church. The ministry of the Holy Spirit flows through us to lift us up to the presence of the saints in glory, and in that brightness of life and truth, we are called to meditate on the unseen realities of our Risen Lord.

The Gospel of John has been particularly encouraging to me of late, along with II Corinthians, Psalm readings, and many scriptural quotes that have come our way. I'll describe more in other postings, perhaps on more details as I have time and energy.

But today, I want to mention how important Margie and I have found it to view life entirely as a gift, rather than as something that we ever control -- even though we often operate as though we do, and perhaps, even NEED to operate as though we do (try raising a four-year old and a one-year old!) But the reality is, as the old song says, "Many things about tomorrow, I don't seem to understand; but I know who holds tomorrow, and I know he holds my hand."

I put on the old Betty Stalnecker LP today that I grew up with from age 6 (at least), and through the old pops and crackles, was moved to tears to hear her sing that old song with a passionate "Contralto" (I always admired that voice), filled with the sense that he is holding our hand. And that means that our lives are so overflowing with good gifts that we can never become embittered or angry with him. How much beauty, how many wonderful people, what a glorious life in the church, with family, wife, children -- is it truly possible that by facing suffering, one becomes more aware of one's love for this world?

I can't write anymore tonight -- Margie's calling, I need to shower. But here's an idea for a post to come: "These are a few of my favorite things."

Until then,

John

Health Update Concerning Radiation

So many things have crowded into my thoughts that I'd love to write down, but I need to keep them manageable and short. I hope the titles will be clear enough to help direct those of you who are interested in reading.

On Thursday afternoon, June 7, I was able to get together with my long-time friend Dr. Jonathan Limpert, a radiologist, to read through my CDs of the reports that Northwestern Hospital had done. I had already set an appointment the next day with Dr. Anne McCall, a radio-oncologist at Edward Hospital in Naperville. Naperville is much closer to us, and Dr. Raizer's nurse has a 20-year working relationship with Dr. McCall and a high regard for her work, so I knew we would be well treated there. But I valued greatly the opportunity to see my scans interpreted first by a professional friend who does that kind of thing daily, especially because he would see them from the perspective of a Christian believer who also knows the power and hope of God.

Jonathan pointed out to me the areas that would most likely be radiated, and indeed, those turned out to be the areas that Dr. McCall wants to begin treating immediately. After she examined the reports, she proposed a 15-fraction procedure for my spinal column from C6 down to T5 (though I may be slightly off in my memory of this -- she may want to go up to C5 and down as far as T7, but the central area is clear). In the midst of the 15 days, she also wants to include a 10-fraction process to radiate the lemon/small-orange size lesion that is pressing into my left pleura and displacing my lung, making breathing less congenial in that area.

Dr. McCall was very warm and spent more time with us explaining the process than I might have expected. Her sister is a Wheaton College alum, and one of her 14-year old twin daughters wants to attend (at least, she thinks so at this age!) There are already some personal connections and affinities there, obviously, though I hardly know her. She and her staff did another CT scan to set my position for treatment. The lesion by the lung has grown a bit, but the situation down the spine is basically unchanged since the last scan.

So, I start on Monday at 12:15 pm with radiation. Here begins another journey into an assault on a part of my body that is infiltrated with cellular dysfunction. By stopping the erosion of my spinal cortex, the radiologist hopes to avoid a collapse of the spinal column itself that would produce great pain and potential paralysis. The effects of this treatment are well-known, and she shared them with us very clearly. Since this is a three-week cycle of treatment, and since the areas of the back being touched will pass near my trachea and esophagus, I was told that I would likely have scratchy breathing/speaking/singing, and some swallowing pain for a couple weeks. These effects should heal, and there should be some good treatments to help me deal with them along the way. Then the post-radiation process remains a matter for discernment and wisdom with the neuro-oncologist in Chicago, Dr. Jeffrey Raizer.

Thank you for your interest and prayers for me and my family in this process. I was told to continue my regular schedule of work, and simply to plan on needing a bit more rest. That's an encouragement, especially compared to the post-surgical period of radiation I had in 2004 -- a much more draining experience.

Summary -- radiation to begin in Naperville, IL at Edwards Hospital Cancer Center for 3 weeks, Monday-Friday, starting Monday, June 11.

June 4, 2007

Spiritual report on my recurrent cancer

I wrote this back in May, and am just putting it out now. It's kind of long. Feel free to read as you wish or discard.

To begin with, I was not shocked entirely by the recurrence of this cancer, since Margie and I were warned in 2004 that it was common that 80% of the patients with hemangiopericytoma see a recurrence within 5 years. We are at just over 2.5 years since the original treatment, and here I am with a (likely) recurrence. At the same time, it comes as much more shocking news, due to the lack of a planned treatment program, the aggressive nature of this recurrence, and the greater likelihood of a shorter lifespan for me. There is (as I understand it) no known drug that can be used with certified confidence of results, so chemotherapy will almost certainly be experimental. I know also that my physical limitations seem to increase day by day, so that from an irritating cough in the early spring that took a long time to go away (and many people had that), which also caused me shooting pain in my rib cage and sternum, I went to a situation where it was increasingly difficult to find a comfortable position in which to sleep, and then to a point in which getting out of bed without hurting a shoulder or a rib was difficult. Obviously, something was amiss, and I scheduled my appointments with the doctors as soon as I could after the end of the semester. I had held off what I probably should have done sooner, due to the responsibilities of work, family, Redeemed Lives, Holy Week and church music ministries -- you all who know will recognize these challenges and know whereof I speak. Adding a medical appointment in Chicago didn't seem to be of pressing urgency, and I can't even now say that it was. I had the strength to do what I was doing day by day, and perhaps the pain simply hit me later.

On Wednesday evening before getting the MRI and the CT negative results, I went to Bob Webber's memorial service at Christ Church of Oakbrook. It was a great celebration of Christ's victory over death, and such a joyful opportunity to connect with present and retired Wheaton faculty, past and present church friends, and with a couple people who had taken the "Role of Music in Worship" course from me at Northern Seminary. Two things moved me in that service. The closing song "I am the Bread of Life" by Suzanne Tolan was full of joy and promise. As I looked up at the towering wooden ceiling at Christ Church, it formed a picture for me of the communion of saints that is presently alive and worshiping at the throne. What a glorious unity we share, and to be at rest there is our destiny.

Next, I heard the gospel reading in a new way. It was from John 11, a portion related to the resurrection of Lazarus. When Martha comes to Jesus and he tells her that her brother will rise again, she willingly affirms her belief in the resurrection at the last day. But there is in her voice (at least to me) a tone that almost implies that despite that truth, what good does it do her in the midst of grief? "Yeah, yeah, yeah -- I know he'll rise then -- but you could still have done something now, couldn't you?" Jesus then says to her, "I AM the resurrection." He follows that with more about the promise of eternal life, but I was very struck by the way that Jesus called Martha out of her grief and inward despair, and revealed himself to her. The resurrection is certainly an event in salvation history, but it is not primarily an "event." The resurrection is Jesus. The power of the life of the Son of God himself will raise us also, if we are united with him. It is an amazing statement, worthy of deep meditation. Even if we die, we will live forever.

I was also touched by an e-mail sent by a woman in our church, Barbara Gauthier. She copied a portion of the Letter to Diognetes (2nd century), and this line in particular got my attention: "The body hates the soul and wars against it, not because of any injury the soul has done it, but because of the restriction the soul places on its pleasures."

This could be misinterpreted, I think, in a gnostic direction, in which the spirit or soul is pure, and the body is evil. Obviously, both are in need of redemption and the work of Christ. But in one sense, like Paul says, our outward man is perishing, and our inward man is being renewed day by day. So we experience the two in conflict with one another. As the Letter goes on to say, "Christians love those who hate them just as the soul loves the body and all its members despite the body's hatred. It is by the soul, enclosed within the body, that the body is held together, and similarly, it is by the Christians, detained in the world as in a prison, that the world is held together. The soul, though immortal, has a mortal dwelling place; and Christians also live for a time amidst perishable things, while awaiting the freedom from change and decay that will be theirs in heaven."

This passage falls into the context of the relationship between Christians and culture. What came to me as an encouragement, however, was the message that just as my body could be perceived as an attacking enemy, warring against my soul, I should practice the inverse. Just as a Christian is called to endure persecution, we are also called to endure suffering. I should not fight against my body, in the sense of complaining and whining about its weaknesses. Rather, I should give it the care and patience it needs, all the time, letting the pain I may feel draw me closer to the Lord.

Sorry for the length of this message. As I mentioned earlier, I will look into the idea of making a blog (and, apparently, now I have!)

God bless you all,

John