The End – Don’t Look Back
Don’t Look Back
I have thought about what to do with the following material for the past seven years. I still agonize over decisions I made despite my stringent rule of “don’t look back.”
Reading through these emails, I relive the desperation I felt trying to pry 50 years of “secrets” out of my estranged father without badgering. My attempt to share my innermost thoughts to encourage him to do the same.
The email messages are intact. I chose to present them in their entirety with absolutely no editing. Nothing has been cut. I hope this act gives me some closure…
June 2, 2003 – Jason to Me
Reckon I ought to update. Got to feeling awfully dizzy when I tried to stand or walk last week. It turned out I was falling an average of twice a day. So I made an appointment with my doctor – for this past Wednesday. The doctor did the checks he could in the office, then said, “I don’t know what the hell’s going on. I’m going to send you down to the hospital so they can do the right tests.”
I had an ambulance come for me, sent me down to the hospital. They fed me really well (after I got taken off the “clear liquids only” diet), were really nice, and really attentive. Thursday, they did a CAT scan of the brain, then a full-body MRI in the afternoon. Friday afternoon, a chest CAT scan. That doctor spotted a tiny “lesion” (in their language, that’s a “mass” or maybe “lump”) on my liver.
They did a needle biopsy right there. That evening, the resident doctor on my case came to my room to tell me they’d found some “lesions” in the brain scan, that their form and location indicated they’d metastasized from somewhere else, and he’d suspected lung involvement. Hence, the chest scan.
In fact, they found several “lesions” on or in the lower left lung – and noted the liver spot. “I understand it’ll take two or three days to get the biopsy results back,” I suggested. Dr. Mofidi was pretty gentle about it. “We got the results in two hours. It’s malignant.”
No way! How could all that have come on so suddenly!? When he told me he was ordering Patient Care, that they’d have their hospice service come out to the house, I like to drop through the mattress. You know. What’s “hospice” mean? Just easing a person through the final few days! Well, that isn’t what it means anymore. I mean, they aren’t talking about a hospice house or just a few days; they’re talking about planning help, weighing the options of radiation treatment and chemotherapy and that stuff.
Anyhow, Mofidi had ‘phoned Felicia, given her the news, then called Linda (got her number from Felicia, as they apparently had the wrong number for Linda at the nurses’ station) So Linda’d called me to say it wasn’t good news – that sort of got me ready for Mofidi. Since Linda doesn’t drive anymore, Felicia picked her up Saturday morning, and they picked me up at the hospital.
I suppose I’m in denial right now. I feel great, am ashamed of how I’m being babied, can’t really believe the whole thing came on so abruptly.
And, of course, I haven’t any idea what kind of timeline they’re talking about. So I’ve got to make an appointment with an oncologist for the latter part of this week, where I suppose he’ll go into that sort of thing, describe my options, and make recommendations. I’ll probably go along with them since I don’t know of any alternatives yet.
One thing I’m definitely not concerned about – losing hair. I don’t have enough of that to bother with.
So I’ll try to keep you posted.
Love, Dad, and Jason
June 9, 2003 – Me to Jason
Guess I’m finally getting over my own case of denial.
Allison’s [my older sister by 4 years] call was a fist in the gut! Your email helped to fill in a lot of the details. I appreciate the update.
We’re just finishing up nine months of cancer treatment for Jackie’s closest friend – first the breast surgery and lymph node removal, then chemotherapy and now only two more sessions of radiation, the last of 33, and she can begin to recover. She was fortunate that her cancer had been caught early, had not metastasized, and that her treatment went as planned.
Still, none of this prepared me for hearing your news.
I think you ought to write a book about this experience. It’d give you something else to do, provide an outlet for your emotions and serve as a first-person account of the process. You’ve already got the preface done in your email to me. The working title could be “Through the Mattress.”
About the hair – I feel the same way you do – when Lanny’s hair fell out, I shaved my head in support.
It wasn’t much of a sacrifice, really, a few token strands, but it was the best I could offer. Guess I’ll just keep it that way a while longer.
You know I’m with you in my thoughts. I hope you have the time to write to me often and let me know how you are progressing. I’m curious to hear what the oncologist has to say about all this.
Just a side note as a bit of an explanation, I don’t deal with emotional stuff very well. I tend to mask it, bury it, run from it as fast as I can. I turn everything into a joke, a wisecrack, or some other form of humor. Sometimes it can be inappropriate, but it’s the way I express myself. I just wanted you to know I understand the gravity of the situation, and it’s exactly what I’m fighting.
Maybe we could be each other’s “email shrink.” It would make for interesting reading several generations from now!
Love, your son,
June 10, 2003 – Jason to Me
It’s hard to come out of the shell I’ve occupied most of my life, but I have to admit that your message tonight wiped out a sort of awful vacuum in my world picture. I need to update you.
Had a consultation with Dr. Cline, oncologist, Friday. Will get hard, tightly focused radiation to the brain lesions — ten treatments on consecutive working days (I suppose cancer can understand the “working day” concept). I don’t know the schedule yet, but I do have my initial consultation with the radiologist, Dr. Uhl, this Thursday P.M., at which time I guess he’ll set up the schedule.
Because of the focus and ready accessibility, it does really lethal things to the targeted cells with zero collateral damage. That makes the safe assumption that the lesions are well defined, currently well-bounded, and I suppose pretty small individually. Anyhow, I’m told the treatment will kill them, and they’ll gradually be reabsorbed. None of the surrounding brain tissues will be affected, nor will the circulatory plumbing.
The primary lesions — those in the lower lobe of the left lung — can’t be treated that way. Their location and, I guess, their geometry prevents both the hard radiation and the tight focus. So radiation would produce serious tissue and plumbing damage. Given my general lung condition, aggressive surgery anywhere would apparently be pretty hazardous, so they’re not going after either the lung or liver lesions, except through regular diet, etc. We’ll recapture the brain and let the lung and liver play out the game.
There won’t be any chemo. The doctor tells me that chemo for that kind of lesions in those parts of the body have shown about a one third success rate, and that limited to months rather than years, while the other two-thirds proved lethal. I’d already made up my mind I had nothing so important left to offer to make the rigors of chemo worthwhile, so the doctor and I reached an agreement almost without having to say so out loud.
In any event, they’ve put me into the hospice program, and the house has been like Grand Central Station starting Saturday. A flood of support specialists from the hospice organization. It’s really taken almost all that time for me simply to get a real grasp on the program and what it’s going to do for Linda and me — and for everyone we love. It’ll handle the myriad of administrative details, back us up physically when and if that becomes necessary, and basically take a load of everyday life off us.
In particular, it relieves Linda of a lot of tricky decision making and provides the muscle to back up her 80-year-old frame — in August, that is.
There’s apparently no outer limit, time-wise, as long as the primary diagnosis remains in effect. Here are a couple of the amazing features; they buy and deliver all meds prescribed in the treatment of the condition (I’m currently on only one corticosteroid, which they’ll wean me off at the end of the radiation, one indigestion med, and Metamucil). They’ll also provide light housekeeping a couple of times a week — that’ll help Linda a lot — and if I thought I needed it, they’d have someone come in to help me shower. (Now that might have appealed twenty years ago or so.)
The upshot of it is that we’re suddenly being babied in our own home.
I’ve indeed gotten a lot worse with my breathing the last few months, and I’m really not up to more than one real action item in a day without getting exhausted — I wouldn’t think of trying much of a walk, even on the level. But that shortness of breath is the only evidence I see of the condition. Nobody seems willing to go out on a limb about probable duration, although they have a few anecdotal instances of survival in the program for several years.
So I dunno. I’ve started a sort of crude tracking chart of the one thing I can really measure.
Mostly, I sit still in a reasonably comfortable chair. I try not to get up and do anything. If I need to refill my water glass, I wait until I have to go to the head, and then I keep waiting until I remember what it was I wanted to get out of my office, and then I wait until I remember an article in the paper I wanted to reread. And finally, I so get up and do all those things and get back into the chair.
Once there, I have to catch my breath, so I measure the length of time it takes from when I sit down until I’m breathing comfortably — nose breathing with steady, unlabored mechanics. And write it down. I just started that at about five o’clock this afternoon. Dawned on me, I’d be charting my trend. Judging from the past few months, times will probably show a gradual increase.
As the curve develops, it may become clear there’s some kind of limit or revealing slope change. Because at the moment, I don’t know what kind of slope the curve is likely to present.
So I’m now making lists of the action item lists I’m going to need to get the things done that I want to do. Quite neat to have the need sort of dumped on.
I’ve gotta say that I wouldn’t trade my situation for Jackie’s friend for anything in the world. I’ve lived a full, rewarding life.
I’ve gone to a lot of places and had a lot of experiences. True, I haven’t made any notable contributions to humanity, and I’ll be like the guy pulling his arm out of the pond and not finding a hole where it was. Still, there’s sure one road I don’t remember having taken and one destination I don’t recall having visited. So I’m very much looking forward to that trip.
June 10, 2003 – Me to Jason
Gee, how do I start?…
The results and assessment are blunt and to the point. Under the circumstances, it seems like you don’t have much choice but to do what you can and deal with the rest as it comes. It sounds like you’ve got all the right kind of help — but I’ll bet you just want some privacy now and then.
I never think of you and Linda as any different from when we visited in 1955 or when I came out in 1965. It’s hard to see numbers like 80 and try to match those to you two. I think my brain is stuck around twenty-something! I get in trouble when I try to do physical things my aging body can’t handle. I’m shocked now and then when I look at the pictures of me with the grandkids — I don’t know who that older man is sitting there in the middle.
The “business day” comment is right on. When Lanny learned that she had cancer, she was frantic to get it removed! Each day that went by before her surgery, she was obsessed with thinking about her lump. She felt like there was an alien presence inside her. I’m glad that they decided to attack the brain lesions anyway. That’s probably my greatest “monster in the closet” that something will happen to my brain, leaving me a vegetable or trapping me in a non-functioning body.
It’s strange how people react to news about someone having a disease or condition that puts some time limit on their life. Jackie would become melancholy thinking about Lanny’s condition and how it might have a bad outcome. I would feel that way too but rationalize that we all had a limit on how long we would live. Being the sensitive person that I am, I would tell her that while she was worrying about Lanny being gone in a year or so, I might drop dead the very next day!
She didn’t buy that argument — even though I got the feeling she might try to help me accomplish the dropping dead part.
About the hole in the pond part — I, too, have contemplated the lint in my navel. A bit of my peculiar wisdom, our personal deeds and interactions affect everyone they touch in some way that changes their life path. We may never be aware of it, but it happens. But the most gratifying thought is our self continues in our offspring.
I’ve been looking for the “why” of my and, in some respects, all of our existence for at least the past 25 years. Then one day, quite by accident, I heard myself laugh — a laugh I had heard when we came out for Karl’s wedding and stopped by to visit you guys. I laugh exactly like you!
I think if I knew you better, I would find an astonishing number of parallels in our thought process, behavior patterns, and other characteristics.
The holes we leave behind have names and faces and will most likely continue the “tunnel” of our existence, just like you are a product of Grandma and Grandpa (with Freda, Doug, and Felicia). And your kids carry on your existence and my kids the sum of all of us. Besides, I have been called a hole even though there were some qualifying adjectives before it!
Based on your description of your mobility limits, I understand how hard it must be to get up and retrieve your email. But I do enjoy reading your messages and hope you can continue.
As for me, I’ll keep writing until somebody tells me to stop. (excluding Jackie, of course, she gets nervous whenever anybody writes anything down — afraid that it will come back to haunt. She’s probably right, but that’s another trait of mine, I don’t take much advice).
You mentioned a couple of things in your last message that struck a chord with me – a vacuum, a shell, and someone helping you in the shower – oh wait, the last one’s not part of this book!
I guess I identify with the shell, and I understand the 50-year blank space in both our lives. As for me, you make a captive audience; you can feign interest, and, maybe, just maybe, you are the only person in the world who will really understand what I write.
I’m not one to have casual conversations. I’m terrible at parties – if sober, I stand by myself trying to overhear all the chatter and watch how people behave. If I get liquored up, which hasn’t happened in a few years – can’t stand the pain and memory loss – I try to be the life of the party and make an absolute fool out of myself.
If I find someone who seems interested and I open up, I always get burned. Repression, censorship, and paranoia have become the catchwords of my life. Most people who know me, mostly from work, think I’m rock-steady, a fabulous co-pilot, always so calm and in control. I guess that’s what they’ll tell the reporters when I finally burst open like a volcano!
There’s probably a definition of sociopath floating around that has my picture next to it. But I hate to be pigeonholed, labeled, or understood. I love being mysterious. Joanne calls me “Walter Mitty” a lot. She thinks pondering, reading, writing, and the like are the Devil’s tools, and there’s nothing like swinging a hammer, digging a hole, mowing a yard, or painting a wall to keep a person on the straight path.
I think I’m friendly, giving, kind, ready to serve. People who have worked for me were intimidated and afraid of me. One of my last groups put a “Mood-o-meter” on my whiteboard so they would know what their reception might be at any given moment. My current position is quite a luxury, nobody works for me, and nobody really knows what I do, so I’m pretty much left alone.
I’ve been called snobby and condescending – probably justifiably so. I try to learn as much as I can about a subject, and I respect other peoples’ opinions if they are experts in their field (and they agree with my deductions!).
Everything I do is all or nothing (for example, this email message). I love whole-heartedly, I hate absolutely, I change my mind in a split-second and expect others to follow. If I were ever psychoanalyzed (that’s another topic all to itself), they’d probably want to do a lobotomy, electroshock, or psycho-drugs. But I wouldn’t want any of it! Then I’d just be another boring drone shuffling my way through life.
I love and cherish my roller-coaster and love every experience I’ve ever had. Everything teaches, and sometimes the most painful events can be exquisitely revealing.
Well, you’re either asleep by now and drooling all over the keyboard, or you’re calling a judge to get a protective injunction to stop these barrages!
Write when you get a chance. All my love,
June 12, 2003 – Jason to Me
I definitely want to respond, but there’s enough I want to say that I’m not going to do it at this time of night. I will write sometime tomorrow.
June 14, 2003 – Jason to Me
I don’t feel like insightful writing tonight, but I want to keep you up to speed. So here’s a sort of boilerplate status report.
I include a sort of boilerplate update – maybe like an attachment.
I’ve started on the ten-session course of radiation treatments of the brain. What I’ve said about those treatments hasn’t been entirely accurate, it turns out. The current facts, as provided by the radiologist, are:
1) They don’t use the super-tight beam I imagined, nor is it quite as intense. In fact, they aren’t using “particles” but energy packet photons from a linear accelerator.
2) They can’t be sure they can see every cancer cell or cluster, so they’re radiating some of the areas outside the visible lesions.
3) The treatments are expected to jolt the hell out of the cancers, but they probably won’t kill all of them. The expectation is that they’ll effectively limit the cancers so that they’re no longer primary actors in my condition.
4) The lung and liver lesions will essentially be ignored. The radiologist expects it’ll be the liver that finally gets me.
5) He discussed side effects. That was when he let a sort of number slip that everyone else had avoided. “As for long-term effects, a year from now, you might begin to see some real memory problems and, possibly, some degradation of intellectual capacity.”
6) The treatments last about two minutes from each side. With the second one completed today, I have eight to go – five next week and three the following.
7) He told me to expect to lose my hair (what little is left on top) by the end of the sequence. So I’ll feel I’ve at least got that badge.
8) So far, I don’t feel any of the potential side effects – no even the tiredness he predicted. Maybe tomorrow.
As for the rest, we’ve almost been smothered by the hospice folks. After getting over the crush the first few days, I have to admit I’m really getting spoiled. By nature (and I hadn’t really noticed this in the past, although I see it clearly in retrospect), I’m driven to be doing something. It’s hard to kick back and contemplate the universe. So now I’m beginning to think, “Well, I did do one action item today. Why not do the next one tomorrow.”
Given that developing outlook, I’m reading a lot. Surprising how many fine (non-fiction) books on my shelves have sat for years without being read.
And I’m making lists of things I definitely want to finish.
Okay, so much for tonight’s status report. June 13, 2003.
Lots of love, and a lot more later — Jason
This was our last communication – he took a turn for the worse, and they decided to discontinue the radiation treatments. He was moved to the hospice facility, where he died in a morphine-induced coma on June 20, 2003. He would have been 78 on his birthday.
My sister flew out to be at his bedside at the end. I struggled with myself – Jackie said not to go, and I knew my mother would be furious and hurt. I didn’t go to California. Inside I feel bad.
His mother, my grandmother, finally got her wish and died August 9th after him. She would have been 100 on her birthday. I didn’t go to California for her memorial either.