Journal entries from April 1991

Notes about aspirations from J the Younger to J the Older:

4/22/1991 - Cold. Dogwood winter, so they call it. Many things left undone. And I'm being silly. I know the seriousness of some of the stuff I have to do. But being this worried is stupid. I mapped it down a million times in my head: I want to live and have more experiences before I call it "a life." There are so many things I want to do. But there are certain limitations in my current condition, or position, to recognize what it is I have to do to achieve success.

I need to make a bunch of compromises in order to coexist with those around me. No matter what the difficulties, I have to stop blowing things out of sensible proportions that will clearly intimidate me in the long run.

Confidence! Damn it!! Leave the suspicions to those who wish to be suspicious. There are people in many more dire situations than I. So, I've got to be positive. There are too many kids in similar positions who lose faith and decide too early to make unreasonable, even harmful, limitations on themselves. I've got to be patient, got to be wiser, and sometimes even cautious.

Gotta keep telling myself, I AM talented; I have some worthy, redeemable qualities. I'll make it if I keep those in mind. Expressions of cocky bravado and cleverness can be dangerous. I know. Proposals on what to do are often pointless. I've got to be more practical and smart about the decisions I make. But for now, I'm just so disheartened by the insecurities I've formed. Well, I am human, still very much a child. I have to deal with shit and move on. I need to lighten up emotionally, get that mood going the right way. Stop being so overbearing on me, me! Calm down, don't break down.

Past diagnosis jargon

12-27-2016 12:44PM

Tell me about medical jargon. No wonder people think doctors are fuckin' geniuses. And still I'll edit for relevance:


EXAM: PET/CT SKULL BASE TO MIDTHIGH (easy part so far)

FINDINGS: There is physiologic uptake of tracer in the head and neck.

...2-3 mm nodules in right middle lobe; nodules in right middle lobe, a 4 mm perifissural nodule in the inferior lingula, and a 3 mm left lower lobe peripheral nodule.

No significant increased uptake in the skeleton and no suspicious lytic or blastic lesions.

IMPRESSION: Hypermetabolic focus in the body, the stomach consistent with the patient's recently diagnosed gastric adenocarcinoma. Adjacent slightly prominent nodes, which are not FDG avid but raise the question of adjacent metastatic adenopathy and biopsy would be needed for further evaluation. Nonspecific bilateral pulmonary nodules as above.


To translate, this basically means I'm sick. Got cancer cells floating around stomach and lymphatic system. And treatment strategy was nothing short of aggressive and brutal. All I can say is that the experience was hellishly memorable. Surviving has not been easy. But hey, nothing worthwhile is ever easy, right?

What it takes: Ramblings from a prose/poetry freewrite

What is real freedom? I ask, "Is it freedom to want or freedom from want?" Living things must consume to survive. So, it's unnatural not to feed when hunger pangs strike. The body knows before the mind can consider anything else. Higher function is out the attic window. I'd like to think I know better, now that I'm so much older. Presumptuous? Maybe.

My gut tells me to eat the damn sandwich. Who cares if there's meat in it and I'm vegetarian? (Btw, I'm not. This is just for argument's sake.) Gotta survive, gotta give in. Then afterwards you can think about moral implications. Willpower only goes so far: 3-4 days without food and you'll scour an entire steakhouse dumpster. Your better angels won't be in sight or in mind. You'll tear into red meat as if it were wrapped on a lollipop stick. Then, when you're satiated, you'll maybe consider such luxuries as noble truths and how to live a moral life. Maybe you'll find that a bunch of crap you thought was noble ain't so noble afterall.

Guilty conscience? Who has time for such nonsense? I'll sink my canines into the thought-pulsing veins of God's own mother before I submit. Besides, no ones's fit to oppose me. Whatever I deem necessary, I must do. It's as innate as the drive to survive.

The dangers of thinking too much about what others think

"They'll only remember what you were like before you left." So, how is this quote comforting?

I'm paraphrasing what I heard on a TedTalk. It was in reference to long periods of absence from others, due to illness, break from work, or other transitions in life. The talk was about how we're all hardwired to project onto ourselves a false sense of what we think others see in us. (SPOT: gonna have to edit later for clarity.)

The quote applies equally to the larger context of life itself. For example, at your funeral, not a lot of folks are gonna give a damn about the greater extent of your life, particularly your private life. Each person will only remember the snippets of time that he or she spent with you.

We think that even our dearest friends are able to see what's locked deep inside of us, whether we opt to reveal our secrets or not. But that couldn't be further from the truth. My point is, when you feel like you're "out of the picture"--i.e., separated for a time from people --you get all too self conscious and you feel embarrassed or ashamed about yourself. Most of the time those feelings are unfounded and needless. Truth is, even those you care about the most don't care that much about what's going on in your daily life. They're just as consumed as you are about the goings on in their own personal lives. I suppose the only exemption would be for parents of small children.

Electronic Mail (as opposed to the snail kind)

I'd like to share a correspondence. It's actually much more open and frank than the stuff I've posted in this blog so far. And because I hadn't considered posting such personal information before, I think it's more authentic-- nearly dying hasn't necessarily cured me of not wanting to reveal some aspects of my life.

I will, however, edit certain parts of the email and omit identifying names other than my own, to respect some level of privacy, and since I also didn't ask for his/her permission to post this-- though I don't think s/he'd mind. Maybe?

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Jani:

I have been wanting to write you since I saw your FB post about your blog and absence from the [Hume-Fogg H.S.] reunion. First, I want to extend my ... something to you. I don't know what, but my heart goes out to you; not as an expression of pity but of empathy.

I lost my husband, truly my soulmate, last year to prostate cancer. He was diagnosed with stage IV. He endured surgery, radiation, and chemo, all in the first year to reap the rewards of 8 completely blissful years. We were married 13 years.

I say that to let you know that I understand what you're going through, at least as intimately as one can without being personally diagnosed. Also, I wanted to tell you that many of the treatments my husband underwent weren't available when he was diagnosed. In fact, we became friends with the urologist who diagnosed him and gave him 5-10 years. It was years later that he told us he didn't expect to know us for a year. 

I was actually prompted to write after reading your first blog post and "Days You Wonder Why." Of course I had no idea of your situation, but I'm glad you're sharing it. I don't think you realize the impact your story has on folks in a variety of situations. 

For example, I was actually happy to read what can only be described as a rather pessimistic sentence: "I'm not actually starting over. If anything, I might be re-starting from behind." I was happy to read it because it meant someone else feels like I do. I don't have cancer, but I became a primary caregiver to my mother who passed on. I quit my job to become a primary caregiver to my father. He passed in [...]; my husband passed 6 months later. 

For the first time in life, I realized I was completely alone. If I was able, I could start over, completely from scratch. Not many people get that "opportunity" (a word I hate to use in that context). Nevertheless, I also realized I'm [... now] single, still grieving, and I haven't worked in years. Um, can someone give me a hand? Maybe some direction? What the hell am I supposed to do now?

[From a previous blog post:] "I wonder why I'm going through this miserable existence, half awake and conscious to 'where the hell am I?' Real to surreal and back again. It's a bad trip. How do I keep track of priorities when it's hard to tell what they are?"

I imagine that paragraph has a totally different meaning for you than it does me, but every word of it hits home for me, so again, thanks.

I'm going to stop rambling. I just wanted to reach out and share my story and tell you to keep doing what you're doing. It makes a difference.

Feel free to reach out anytime...

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Dear B,

Your words brought tears to my eyes. I feel and know that pain, the enduring pain of loss and, then, pointlessly questioning a God who must be indifferent. Goes beyond "Life sucks!" But childish fits don't help.

What you took the time to write me was important enough for me to sit at my desk and write you back on my computer. Smartphone keyboards make me feel like those writers who never learned to type properly. Better to keep up with the thoughts that form in my head, by typing the way I was taught. Still pretty darn fast on a keyboard... Btw, you didn't ramble; rambling is when you digress so much (e.g. Trump), you go off on that tangent of, say, typing, and you talk about how you miss old typewriters and the tak, tak, ding sound they make. See? Now, that's rambling ;-) Believe you me, I know how to ramble.

Well, I've always been a smart-ass. A coping technique, a form of avoidance, but sometimes the best way to address the harsh realities of life. Because what are you gonna do? Beat up every kid who picks on you? Get back at everybody who's ever slighted you? Just does more harm to you in the long run.

Being a smart-ass (still) helps me see the humor in life and lets me laugh at myself, which is very comforting. That this insignificant grain of sand would dare stick his chin out and mock the Creator. If I can do that, ain't nobody got a chance of touching me or hurting me.

Hope you found peace along the way. Hope you realized you were never really alone. Even when you felt so all alone (I've been there and so have many others I know), you were not truly alone. You could've reached out to friends you didn't even know you had, whose hearts are filled with love and kindness and understanding.

My battle with cancer made me more dependent than I cared to admit or acknowledge. But the good thing was that my stubborn pride was squashed by my feeling so vulnerable. No place for pride amidst relentless and agonizing personal suffering. I can see that you discovered, yes, very intimately that you don't have to have cancer to know what it feels like. You live the battle, too. In the same way, you don't need to be the cared for, the patient, to know what he or she is going through. A loving caregiver feels the loved one's pain and confusion and suffering, and even the drifting off into death. A piece of you really does die as well. 

B, you and I are kindred spirits in many ways. I can tell you that cancer isn't the worst thing that's ever happened to me. The worst is the loss of my little boy Noah who I held in my arms as he left me, as his body became lifeless in my embrace, and I couldn't let go. I wouldn't. I pleaded for him to come back. It took me a while to accept that that's also a part of life: "to love what death can touch." (It was his time. Born with multiple disabilities, Noah required round-the-clock attention and a private duty nurse during the day. I was his caretaker on weekends and evenings. Quit working full-time to care for him full-time. Sure, the grief doesn't ever go away completely. But it consoles me to know that he's no longer in pain.) Then, as if the flood-gates had opened wide, one of my dear and closest friends died in a car accident only months afterwards; my wife and I separated for over a year (we're now back together); and I was diagnosed with cancer-- not to mention the succession of friends whose fathers died all in one month. 2015 ('16 to half of '17) sucked! Never been to so many goddamn funerals in so short a time. And yet, life goes on...

I'm glad my words are relatable to you and others. Yup, I don't realize the impact they have on people. But it's nice to share and, if some folks find comfort or connection in my stories, I feel very flattered and honored.

Mrs. C suggested I publish some of it. My reaction? I was aghast! Frankly, I don't like all the bitching I do in the blog. Let me rephrase that. It's not about liking or disliking the bitching since it's rather a good form of therapy. I can't imagine not cursing and venting out loud in my writing, serious or not. I guess I can't really find a place for it in my overall body of work. I know, sounds kinda snobbish of me. Guilty as charged. Sometimes, I feel that being an academic actually gets in the way of good writing. Yeah, I have to learn to get out of my own damn way, and just let the words flow. D was good at getting us to do that. Sure do miss those old HFA days, the good parts anyway. (See? More rambling. I make it an art ;-)

Hey, I don't have your number. If you ever want to talk, feel free to reach out: 00-0. Text me or leave a voicemail. Like most folks these days, I don't usually answer if I don't recognize the number. (I absolutely abhor unsolicited sales calls.)

Please know that you're surrounded by people who can relate, who love you for the strong person you are.

Kindest Regards, Best of Wishes (my two best sign-off's),

Jani

Recovery

Lots of back-and-forth thinking this past month. That's about how long it's been since my last chemo treatment. I keep wondering what's ahead now. That's what causes anxiety, I suppose. It also makes for a certain level of healthy excitement. Not knowing what the future brings can be exhilarating, if not fearful.

I tend to embrace the unknown. Makes it easier to accept mortality and the pains and suffering of so long a life-- "slings and arrows of outrageous fortune," as Hamlet would have it. Joys are much more fleeting. Taking comfort in enduring pain is more lasting. Yes, comfort in pain. You grow intimate with it more so than with happiness and joy.

The starkness and indifference life has to offer is a strange realization. You deal with it with no sense of bitterness or anger. You just deal with it. How do we justify getting angry over what we can't control? Life throws all kinds of obstacles in the way of personal progress. Again, you just deal with it.

Fighting, surviving, trial and tribulation, suffering, pain, agony, despair, disorientation, fatigue, strife, blood, sweat, tears-- all sound so aggressive and almost meaningless. After a while you can only laugh at the worst that life puts before you, and finally have to ignore or side-step all the muck. Maybe recovery is something like that-- knowing how to get passed and leave behind so much that's bad, and move on.

Sure, there are always reminders. Physical pain is hard to ignore. It takes a whole lot of courage, a whole lot of knowing how to muster that courage, to move forward. Fearless, I'm not. Likewise, fearful, I'm not. I just go with the flow, tumble and stumble around the rocks, and make a way for myself. No small amount of courage.

Delirium

So, I ask myself, "What's wrong with feeling delirious?" I answer, "It's not always bad." I've gained great insight into the workings of my mind and the minds of others via delirium / hallucination / cognitive dissonance-- or, should I say, resonance? It's short of madness, I know. The lines blur, and you sure do get close to losing it.

Fighting delirium, however, is a lost cause. Embracing it, on the other hand, turns out to be rather interesting. Now, I'm not talking about drug-induced delirium. That's artificial and too often dangerous. Although this very minute, I know I'm encountering the artificial kind brought on by the side-effects of all the meds for chemo. If I wanted artifice, I'd go on an acid trip, though shrooms or peyote would be preferable.

But, no, in all seriousness, I'm touting the fascinating aspects of naturally occurring delirium, the kind you get from neurochemicals you produce yourself. An "easy" way to get there can involve fasting, not sleeping for a couple days, meditating / praying for a few hours non-stop, and spiritual and/or physical cleansing, like from a Native American sweat lodge. Combining these helps you get to your objective even faster. Along the way, you may even find your spirit animal or God talking to you in your very own vision quest.

Of course, the condition often means your system has gone a bit haywire-- the adrenaline rush, dopamine receptors firing, endorphins circulating. What's not to like? As long as you don't get all paranoid and run into a flight-or-fight situation, you don't suffer. You dream in a waking state. You experience synesthesia: Seeing and tasting music, hearing the tone of colors and lines-- pretty freaky cool.

The downside, and there's always a downside to peaking like that, is the inevitable CRASH. Well, so what? If you can afford the luxury of sleeping like the dead for a couple of days, even that's not all that bad.

Yet, do I dare speak of Coleridgian tripping? Hell, no! To be exact, Coleridge was on opium. Very addictive, mind-numbing, and depleting.

You're a wise pragmatist when you know how to control yourself, and recognize that you can't go around tripping every day. You'll never get anything done. And without any doubt, being naturally high on life, after all, is the best kind of high.