Recent photo of my parents in my office

Recent photo of my parents in my office

August 9, 2007

Overdue Report

My apologies to those of you who have been checking for some time about my health situation. Here are some of the matters to report.

After seeing Dr. Raizer back in July, he had a blood test run on the status of calcium, etc. in the blood (forgive my unprofessional descriptions of these processes!) After reading the amount of calcium, they sent me to the ER for Saline solution and the IV of a medication that is intended to seal the calcium into the bones, and slow down their decay. After that test, I tried to find someone who would do a blood test to see if the medication had been effective, but to no avail. My internist referred me to practitioners who had served from 4 to 6 years; his nurse referred me to a neurologist who doesn't take insurance; and Dr. Raizer's office was impossible to track down.

So I went back to the doctor at Edward in Naperville, where my radiation had been done, and asked for a referral to a general oncologist. This idea came to me by a comment that Dr. Raizer himself had made. Since this is such a rare cancer, and a brain origin is apparently its most rare place of origin, it was simply for that reason that Raizer was the neuro-oncologist put in charge. But if it had occurred where it more often does, such as in the bones, liver, or lungs, then I would have seen a general oncologist from the get-go.

Dr. Raizer's nurse e-mailed us on Monday, July 30th, saying that he wanted to see us on Tuesday morning at 9:00 am. I wrote a civil response in return, pointing out that we simply could not go to Chicago that day (Margie had planned a splash party for many women-friends and their children, and I had work to do), but that we'd come on Thursday or hear any serious news on an e-mail if necessary.

In the meantime, I had made an appointment with the new oncologist, Dr. Alexander Hantel, for Tuesday. As I walked in the Cancer Unit (where I had had radiation as well), there was a live harpist playing. Tender, even worshipful music -- "Be Thou My Vision", an Irish tune, but also a hymn, for example -- made me think, "If I have to die, I'd rather do so here!

By contrast with Northwestern, I actually got to see the doc within ten minutes of my scheduled time (try 45 minutes at best to 2.5 hours at worst in Chicago). He listened carefully to my symptoms and medical history, and then proposed some ideas for moving forward. He knows Dr. Raizer, and felt that it would not be a problem at all for him to take my case. In the midst of our exam, he listened to my heart and lungs. I took off my cross, but he told me I didn't need to. Then he said, "What religion are you?", knowing that I work at Wheaton College. I responded, "It shouldn't be hard to guess, should it?" To which he threw out "Evangelical Christian". I agreed, and said that I attended an Anglican church, and he responded with interest and said, "I am Russian Orthodox." It turned out that he attends a church just down the road from us in Winfield, and he also sings in the choir. In another curious event, I had an encounter with an Orthodox Priest who had attended PCM and had received great healing. He inquired of my health, and when he found that I was being seen by Dr. Alex Hantel, was truly delighted, affirming the spiritual solidity of the whole family, the faith and virtue of their priest, and so on. Needless to say, this provided a sense for further connections, and a serious awareness on his part that life does not consist of human power alone.

He ordered the blood test I'd wanted, and brought me back to the hospital the next day for an IV of a new drug that should help to manage my hypercalcemia (the term for elevated calcium in the blood). I see him again on August 15th. Pray for that day. I will also cease those long voyages to Chicago for treatments or depressing news.

As far as that goes, I did (finally) receive from Northwestern the paper reports of my last CT scans and bone scan. It was not positive, as I would have expected. Fractions in my ribs have increased, along with erosion of bones throughout the body. No organs are penetrated (praise God!), but I find it increasing difficult to sit (much less walk). There is so little flesh to sit upon between the surface and my buttocks! Margie told me the other day that from behind heading to the car I look like a 90-year old. I was deeply charmed by the compliment :-), but it's true. I have to breathe deeply to remain centered and to allow pain to wash over me without becoming tense or using other parts of the body to compensate. Blessedly, I only take about three tablets of acetaminophen per day for pain. So I'm avoiding all of the addictive pain meds as long as possible (hopefully forever!)

One of the greatest things that ministers to me is the simple touch of close friends and believers. Each morning, Margie and I have begun receiving the reserve sacrament from the church. It comes with a simple liturgy, and a few options for the opening text are listed, all from the Gospel of John. My favorite is this:

Jesus said, "Abide in me, as I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me. I am the vine, you are the branches. By this my Father is glorified, that you bear much fruit, and so prove to be my disciples. As the Father has loved me, so have I loved you; abide in my love." John 15:4-5a, 8-9

Meditating on this passage has been another of those deeply moving moments. "Abide in me" makes me think of having my legs deeply planted in soil. Then this amazing statement: "As the Father has loved me, so have I loved you." The love between the Father and the Son is undivided and eternal, unseparated, perfect, filled with purity, glory, and light. The unfathomable part that I had not noticed before is the line, "so have I loved you; abide in my love." I am being, as are all of those who believe, being invited into a perfection of unity with eternal love, even though we ourselves are incapable of maintaining the unity. I sin, I mistrust, I do not abide in the love of God. But when I do, I am called first to repent -- "Lord Jesus Christ, Son of God, have mercy on me, a sinner" -- and then to receive and remain in the love of God, something that is a new experience for me. It is there that I sense the greater power released for healing in my body.

May all of us grow in that capacity and in that vision of light and glory.



Paul McNulty said...

John and Margie,

I just want you to know that we are praying for you and your family during this tough time. Your perserverance and positive attitude is inspiring. We pray for your total recovery and healing. Keep up the good fight.

Psalm 46

Paul, Kathy, Kristen and Molly

Sandra said...

Dear John,
I'm a friend of Kurt Ash. He sent me the link to your website awhile back. I wanted to let you know that you have been in my thoughts and prayers. You are such an inspiration. I pray for your continued strength, perseverance and of course healing. May God be gloried in your life.
Bless you,
Sandra Giet

Westside Vineyard Fellowship Los Angeles

Anonymous said...

Sarah and I just found your website tonight. Your words in your suffering are from our Lord. We will be praying that GOD touch every cell of your body and renew them for His glory. We pray that you experience His joy and peace despite the pain and anguish. We pray and cry out for him to heal you! Send Margie our love.
Dan and Sarah Lee