Don Has Cancer

May 7 - May 23, 2010

May 7

Hairless Josh is in the hospital for his second chemo treatment. I’m about to go see him. God I wish there weren’t tensions between us.

It’s a selfish prayer, though. I ought to petition for Josh’s spirits, whether or not I’m in the room. Better yet, I ought to pray with praise for the improvements in Josh’s health. God is present, Josh. That’s what I’ll say. Thank you God.

Parul is the best part of my life in these last few years. I say that, God, without bumping you to the side, realizing and remembering that all parts of my life are by your grace. But teach me, Lord, not to take this special part, nor any part, for granted. Thank you God.

May 8

Met Lorenzo, Josh’s hospital roommate, yesterday. He is seventeen years old, been in the hospital for three and a half months. Got hit by a semi while riding a bike. Good kid.

Josh found out he’s got a hernia —not related to anything. He said they told him that it wasn’t urgent and didn’t need to be taken care of right now, but eventually he would need “emergency surgery.” Probably next winter, Josh said, is when he wants it. Kind of goofy, I think. Josh must have mixed up his terms. Anyway, he wants to have as much of a free summer as he can.

May 9

The key word for the week seems to be “try.” Not that I’m living it, but I’ve been aware of it after studying Luke 13. “Try” is a principal I can apply everywhere: when I’m depressed, when tired, when afraid, when lonely. Try. With Josh, with Parul, with Don, Annie, Mom, Dan, with all family and friends.  With strangers. And most of all with God the father and Jesus the son. Try. Then, allowing the Holy Spirit to enter in, I realize I don’t even have to supply all the energy, if any of it. Only the effort. Thank you God.

May 10

I may not keep this up. I’m tired and even my words are tired. You’ve heard yourself before, Jon, this ought to be putting yourself to sleep.

I have been studying hard, reading Dante’s Inferno, one third through now. I’m on schedule, but it’s going to get tougher. I’ve got to finish Inferno this weekend and then start putting together a paper comparing Dante’s “good life” with Plato’s. I’ve also got to work on a psychoanalytical criticism of Doris Lessing’s “Each Other,” which requires, most of all, research. What gets pushed aside, it seems, is my journalism feature article on the Can Surmount program.

Why have I picked this as my subject? Why can’t I escape it or avoid it? No, it’s a good topic, I think —I guess I’m just anxious that it might be emotionally hard to do. Here I’ve been, working on overcoming my pessimism with Josh’s condition, and maybe I really should stop dwelling on an “odds are” disease.

Wednesday, Josh found out that a certain flag-protein has been dropping in his blood, from a 230 count to a 30. Good news, everyone says. But I’ve kept embarrassingly and offensively skeptical. A defense mechanism, I guess. I do not want Josh to die, but somehow that seems like the only way all of this will make sense. Maybe I’m just in my anger stage, angry with God for playing with us like gameboard pieces, seeing how far we can be pushed. God help me. Deliver me from evil, Father, and do something about this awful threat to my sincerity. I’ve been helping Josh be honest about his insincerity —he’s admitted it, too, and I’ve said (echoing Rod Broding) that it’s okay, you’ll accept it and consider insincerity as much a prayer as the sincerest praise. So I’ve preached. Now I’m tested to believe it.

Part of the reason I’m tired is because I had wanted to get started in my feature story. I didn’t, so I had to blame something. Fact is, I had other things keeping me busy: the Greek quiz, the meeting story and most importantly visiting  Josh —maybe not as valuable to him as it is necessary to me. But I’m not really tired now. I’m just over-trying to stay awake. That’s not much of a conclusion —but I’ll continue another day.

May 12

I should have mentioned this earlier, but I’ve still got the feeling that it isn’t anything to get excited over. Or maybe it’s just different affections that make me a pessimist for Josh and an optimist for Don.

Fifteen days ago, my stepfather had a routine X-ray taken of his chest. There is a spot on one of his lungs. He had a second X-ray taken, and the doctors intend to compare the two before making any conclusions, but due to bureaucracy, ineptitude or the postal system, things got delayed. Meanwhile Don, and even moreso Mom, have become very excited and impatient —and worried. Finally, yesterday, a doctor scheduled Don for a CT-scan this coming Monday evening. The doctor told my mother that it “could possibly” be cancer and one of several “omas.”

It seems like a Woody Allen skit, though. Mom reported the doctor’s words as “very likely,” then toned them down when pressed. Don had just been recovering from a bout with bronchitis that had not lasted overly long. And maybe, I thought and suggested, the reason they hadn’t rushed with this is because they didn’t need to. Maybe the CT-scan was merely to calm us —like the one Woody got when he was sure he was going to die of a brain tumor (Hannah and Her Sisters). Maybe. But then I thought Josh’s problems last February were psychosomatic. At any rate, we won’t know more until the scans get back, which will take a few days more. I will pray for Mom’s worries. And I don’t want Don to die just as much as I don’t want that for Josh, so I will pray for Don, too —but I guess I don’t have enough fear in me to pray for the spot or to pray for the doctors or to pray for God’s mercy on us all. God, may it not be. May my optimism be warranted and may Don and Mom be restored, on that front, to peace, so that, full of health, they may once more direct their prayers to Joshua’s recovery. Thank you God. 

May 14

Josh is doing okay, but today might be tough. His first days out of the hospital weren’t easy for him last time. Pray, pray, pray. And Don’s test is tonight. “It’s too early to joke about,” I heard him say this morning.

It will be a very busy week in school. I had a productive Sunday —thank you God —but be with me now for the rest of this week, even this day, and help —cause —the productivity to continue. Thank you God.

...Sixteen hours later —it has been a busy day. I’m doing pretty good so far, but I’d like time for the body now, to rest the mind —I will yield to the carnal will to close my eyes. I won’t even dream if I can help it. I’ll sink into the pillows and I’ll reach my deep sleep in the most mindless of ways, with the television on and with (God forgive my indulgence, but thank you for the reprieve).

May 15

Don has what is “definitely a tumor, probably cancer.” A bronchiotomy will tell more tomorrow. God be good to Don. But I am afraid now of how I will act around Don. It can’t be the same as how I have clung, practically, to Josh, but I am afraid of the chance of being in a hospital room, visiting Don with no one else around. I had tried to do that every day Josh was a patient, and I even looked forward to the one-on-ones on the days he didn’t have crowds of visitors. But Josh is my brother. Don is my stepfather, and I am afraid that I don’t have enough love, not even the type that God would have us have for Everyman. Forgive me, Lord. I respect Don, I want him to be healthy, I don’t want any pain upon him. I want you, God, to be good to him, to keep him on the path to your heavenlyhold. I want as much for Don as I do for Josh, as I do for myself. But still —I am anxious because I do not “love” Don, because I once even hated him. God let me not be so stuck on the words stepfather, hate, cancer, life, love — 

May 16

Depression —suicidal —silly, isn’t it? So I’m laughable. So I’m not wise. “Certainly you’re sensitive,” they offer, as if that enlightenment would soften the edges of the things that make me foolish; as if knowing would make it so, that the mistake I made was not that big a deal, or that the mistake you made was excusable —knowing, somehow, that knowledge could make facts go away, “that I could fall asleep, la la, and face another day!” I’d rather shut my eyes and never wake. And I would, with a beatless heart and a bottled breath, with a beaten brain, defeated in 27 rounds (and I would follow my father (51), precede Don (59), and leave my brother (20) behind)...

And I would, spiting heavenly feasts and hellish forests, blaming God for leading me to shadows of never, never... blaming God for delivering the land of void. I would, yes, but I am sensitive, certainly, and afraid of the gun, the blade, the car, afraid of dying, afraid I might be wrong.

God help me if this would be my legacy: to write years and years of awful verbiage, to try to die a few times and to fail at it, a la Plath. God help me that I’m here, feeling sorry, sad... God, I need you.

I am ever the fake. And Josh would talk about “sincerity,” but look at me! God help me, I’m knocking though.

May 17

I was going to continue to talk of depression, because only half an hour ago it was still there. I am still low, but I read a letter from Uncle Greg and talked a little with Mom —nothing about these feelings, just good talk. On the way home I had thought —even teared up some —that what I needed was a hug. I guess I got one, of a sort. I guess God heard the knock.

But I am still low. Before the letter, before the conversation, another therapy occurred to me that might still help: to write it all down, to get to the bottom in order to rise to the top. So I will do that now, even though I will not be hitting rock bottom anymore.

A list of why I am depressed:

1. I hate my job (the endless race of rats: the working world can be a manic depression in itself). A few back pats from my boss now and then and I’ll probably be okay, but just having it that way is enough to underline my disgust.

2. I don’t hate school now, but it’s tough, and these last couple of weeks have demanded my full attention and energy.

3. I love Parul, but what they say about love, well, they’re right. I need her. We were thinking about seeing each other tonight, maybe sleeping together, but she couldn’t, and I can’t really afford the time anyway (I would have if she had been available —reason never prevails when you’re in love and when you’re horny). (It’s showing through that I’m not so depressed anymore, and yet I had to say this half an hour ago.)

4. My family doesn’t have any time for me —I don’t expect them to and really I ought to give them more time. But I don’t have the time, they don’t have it: it’s all whole eggshells and unlit fuses. So I don’t say anything. So I keep a distance, trying to avoid cracking or combusting because I need them when they don’t have much to give, and vice versa.

5. Finally, I’m depressed because it’s all so selfish and silly. Why must I be so success-driven at work and school? Why do I need so much attention at home and with Parul? How can I be any different? What would be the otherwise? Then, too, I want the success and the attention, I even pray for it and thank God for it. Now I don’t know if it was even right for me to do so.

Anyway, it’s time to sleep. Thank you God for Uncle Greg, for Mom. Bless Parul. Bless my boss and thank you for my teachers. Be good to Don and Josh, and God help me to understand your will for them. I thought I could accept without having to understand, I thought that blind faith was in me. But it’s not, and I can’t. God help me, I’m still knocking.

May 20

I’m trying to imagine living a life with Parul. She is good, and I could live with her, but would she be able to live with me? I need to change my ways. Improve tact, patience, courtesy tolerance, listening ability, romance. Lessen self, sarcasm, bigotry, arrogance. God I need work. I am thankful for Parul’s own patience, tolerance, etc. But it would be especially selfish of me to keep testing her or to take her for granted. Bless Parul —Lord I pray not that I would be blessed by her but that she would be blessed by you.

May 21

Roland Barthes: Writers are those creatures who never take holidays —they are too struck with “logorrhea.” A writer is a writer, like Louis XIV was king: even on the commode. But I want to be a writer, dammit. I’ve said it before, I’ll say it more, because it’s true: I WANT. I want, therefore I’m not.

May 22

Don has cancer: adenocarcinoma, radiation starts tomorrow and surgery will be done in July. No chemotherapy. He’ll be able to work. Everyone is happy and taking this as good news, and it is, relatively. We all were pessimistic, but after all there is a tomorrow and there’s even a July. Mom sounds like there is even more hope —more than Don sounds like it, but he too has less pessimism now. I wish I could join the ranks. Josh, meanwhile, is in Minnesota for the rest of this week, visiting Grandma. He is getting optimisticable, and he might outlive us all.

God bless this family. Bless Don, bless Josh, bless Mom, bless Annie, bless Dan. Thank you for your presence, on which we so depend. And thank you, ultimately past all illness and shortcoming, for salvation, redemption and grace.

May 23

Don has cancer, praise God! That’s what it sounded like when Mom told me the news last night, and I tried to be happy for their positive attitude. But it was too much. I lost control this morning —I kicked some furniture and did a little shouting, the culmination being that when Mom said “Where does the Bible say ‘lay down and die’?” I replied “Fuck the Bible!” Praise God for my response. Mom came over and hugged me and we both cried for several minutes until we both were able to smile.

I don’t mean to be the eternal pessimist or negative in any way. I don’t mean to be blasphemous by calling everything “God’s will.” But I want to be a realist. Is it contradiction, to be a Christian realist? I don’t think so. I believe in the ideal —I believe in it as truth, that the best is to come for us, that heaven ahead of us is real. 

And I don’t want to be afraid of Josh’s cancer or Don’s cancer, as I don’t want to be afraid of death in any form. I am, though. But God I guess I just want to be real about admitting that. I don’t want to pretend. I want to stand up and shout, “God, I’m afraid,” so that you know, so that you might come and comfort me. 

And I don’t want to be selfish about this. I want you to come to everyone who is afraid in this family. I want to see their honest fear, too. I want to see it so that I know you see it. But then —maybe I am being selfish. Maybe, just as I’ve been working a lot of this out with you privately, maybe I shouldn’t expect any different of them. And after all, this is what I learned from Mom this morning, that she had genuineness to her. She wasn’t just wearing a smile, God, it went deep because it came from your presence within her. Maybe I am being selfish, God, because I needed that testimony. 

Thank you God for your will, and for everything, every real thing that passes all understanding. Peace, yes, thank you, God. But thank you, I’m learning to say, for cancer, too. I can’t understand it at all, God, but that this is your will and that the future still looks brighter than bright, I thank you.

 ⇋

Surmounting Cancer

The 11" x 8" poster hangs inconspicuously between two elevators in the lobby of Lutheran General Hospital. “Can-Surmount,” it announces, as boldly as the space permits. Below this, in smaller letters: “Insight and understanding from people who have ‘been there’.”

Can-Surmount is a national program, sponsored by the American Cancer Society, but in this Park Ridge hospital they “don’t get too many calls,” according to Cindy Wilson, a Lutheran General volunteer with the program. There are plenty of patients, but apparently not enough participation in the support program. “We’re frustrated, but we’re working on solutions,” Wilson said. “For one thing, we’re going to get bigger posters.”

More than any other disease except those of the heart, cancer is a disease of great size and numbers. The National Cancer Institute says that in 1990 more than a million people in this country will have “been there.” Every patient’s diagnosis is paired with a statistical prognosis, where the case is compared to thousands that have come before it. “Each case is individual,” the doctor may say, but meanwhile the individual cases pile up into their categories.

The Center for Disease Control says that in a recent year 470,000 Americans died of cancer. More than 20 percent of all American fatalities were cancer-caused, and nearly 50 times more deaths occurred than those due to AIDS. “Cancer can be a frightening and fatal disease,” said Pam Mikos, a nurse who works with cancer at Lutheran General Hospital.

“It’s a sad disease that nobody wants, but it’s out there,” agreed Syril Gilbert, chief social worker in the hospital’s cancer ward.

Then, as if in unison, the two added separately what seems to be the catch phrase at Lutheran General: “Cancer does not mean an automatic death sentence.”

There are, in fact, many people who have been there and come back. One only needs to look at the statistics again to see that more than half of the cancer cases are being surmounted. The prognosis is much better for some kinds of cancer and most cancers are completely curable if detected in their early stages. 

“Many more people are surviving cancer,” said Mikos, citing the growing success of radiation and chemotherapy. “Ideally, one should start adjusting to life after cancer before one actually undergoes treatment,” she said.

The social work performed by Gilbert and her peers and the medical assurance such as Mikos offers go hand in hand in making Americans aware of “life after cancer.” Nevertheless, when a patient first learns that he or she has become one of the numbers, it may take more than the professional care of the Gilberts and the Mikoses to build an enduring hope. The sympathy of family and friends might provide the extra strength, but so might the empathy of a peer from among the numbers of survivors, who can most uniquely relate.

Dr. Paul Hamilton, a medical oncologist in Denver, Colorado, and Lynne Ringer, one of Hamilton’s former patients, realized this factor in 1973, when they developed a one-to-one peer visitation program and called it Can-Surmount. By 1976, the program was accepted by the Colorado American Cancer Society. The program was first sponsored nationally in 1979, and it was welcomed into the Illinois chapter of the American Cancer Society in 1986.

Can-Surmount provides a doctor-approved support system between peers who have and have had similar types and sites of cancer. Volunteers, who may come to the program one year after surviving their cancer, are trained by the American Cancer Society and matched with patients according to age, sex, cancer type, and all factors that might contribute to mutual understanding.

There are other programs within the American Cancer Society system that provide peer support to patients with specific cancers. Reach to Recovery, the most prominent of these, attends to breast cancer patients, and other programs deal with cancers of the larynx, colon, and brain. But for the many other types and sites of cancer, since sheer numbers cannot allow each to have its own, the American Cancer Society offers and upholds Can-Surmount.

Theoretically, the Can-Surmount program would be an unchallengeable success. In Illinois, of the 50,000 cases of cancer estimated for this year, not including common skin cancer, 25,000 will be survived, according to National Cancer Institute forecasts. Of those, 16,000 are peer-supportable exclusively by Can-Surmount. Illinois has the program in 14 of the biggest hospitals across the state, spread proportionally between the Chicago area and southern Illinois, between rich and poor communities, and between rural and urban areas.

In practice, however, the program has not been as successful as its local backers had hoped for. At Lutheran General last year, 24 patients were visited by Can-Surmount visitors, and most were only one-time visits. The suburban hospital, which handles nearly 1000 cancer patients yearly, has ten volunteers working for the program. These volunteers don’t keep very busy, though, when the program gets only two referrals per month.

Some of the difficulties with Can-Surmount are that despite the number of cancer cases and the attractiveness of the program, getting people interested is not 

easy, getting doctor’s referrals is difficult, and matching up the peers is even tougher.

“You can’t force it on people,” Gilbert said. “Some people don’t want to be visited. Then, with more outpatient care, patients aren’t in the hospital as much, so some are never made aware of Can-Surmount.”

Uni Okuma, regional director of the American Cancer Society in Palatine, believes that the main problem is that there are too few patients being referred to the program.

“Doctors and nurses are a necessary avenue, since the lay volunteers are not professional or part of the hospital staff. But we’re not getting the referrals,” said Okuma.

But even with referred patients, it isn’t easy. Cancer is varied in its types and prognoses, and setting up visitors and patients who are perfectly suited for each other is not always possible.

Gilbert told the story of a Lutheran General case that Can-Surmount could not help. “There was a melanoma patient who died here two weeks ago,” she explained. “He wanted to talk to talk to another (recovered) melanoma patient, but there just weren’t any around. We offered him counselors who were former larynx patients, former brain tumor patients, former colon patients, but he wanted someone who had melanoma.”

The Illinois chapter of the American Cancer Society is currently re-evaluating Can-Surmount. “But we are always reviewing all of our programs, to make them the best they can be,” said Doreen Carson, an American Cancer Society service director at the state office. “This program is still relatively new for us,” said Carson. “We have to be patient with it. Even the most successful programs, such as Reach to Recovery, take a while to get off the starting block.”

“And it may be good that we’re not getting a lot of calls,” Carson reasoned, “because maybe there isn’t the need. But on the other hand, if there is a need, we want to be there.” 

Gilbert, who is not tied to the American Cancer Society except through Can-Surmount, agreed. “If we do 25 units a year, maybe that’s all the people want. If there are 100 cancer patients and one wants the program, there’s nothing wrong with that. But it is meaningful for that one or those 25 people that want Can-Surmount. They need the chance to relate to peers, and they wouldn’t miss it for anything.”

The analyses Gilbert and Carson offer may sum up the dilemma of Can-Surmount, trying to build personal bridges between those who have “been there” and those there now, and finding that where successful personal bridges are concerned, numbers never matter.