Denial and cancer: my experience as half of a couple

I’ve been playing catchup -- reading the stories of other widows and widowers with young kids. Snickollet, Dorcasina, and Crash Course Widow are the top three now. I’m trying to get through years of old entries, because to some degree I should be making friends.

Walking through these deaths and grieving experiences again, so similar to my own, may be contributing to my general Christmas drear. Of course it doesn’t help that I am itchy, my eyes since August, my ankles acting up now and then, and headaches that may mean I’m now a migraineur. (Another club that no one wants to join.)

One thing I’ve been fascinated with is the cancer denial. Gavin really did not think he was going to die; Kubler-Ross says they all do. And basically, I knew he would. I felt he was always too optimistic. I had married a man 20 years older and we’d had other health scares. But we had a peculiar balance, between the two of us, between seeing and denial, between wanting and knowing, and it changed all the time.

Shortly after his death I went back to the therapist he and I had seen a few times during his last 6 months. We had seen her in 1999 after he’d first “died” in the kitchen and I’d had a one-night-stand affair. We were in the middle of our 8 year struggle/indecision about infertility and the anger was so close to the surface. That counseling probably saved our marriage -- we came out the whole deal stronger. She thought he was charming, even when he used the Simpsons line, “And I’m an excellent husband” in session.

After his death, she offered me a few sessions, free, whenever I wanted them, to help “close things out.” She felt for us, and the things we were trying and she knew they were not settled. It took me nearly a year to take her up on it. Seeing her alone, remembering the sessions and where we were in our minds, where we met and where we tussled, was so helpful. After three sessions I was very grateful to her; it had truly helped.

What had helped? To see how different we were. To know that someone else saw us not on the same page, and it was normal, and it was okay. To have someone else acknowledge how much that was hurting me. To have someone say I had done everything I could, that I had nothing to feel guilty about, even though we couldn’t be a perfect team in this one project.

After those sessions, I wrote up this chronology of our ideas about dying.

Basic chronology and how I thought about his death:
1. 1999, When he fell (defib #3 and device initial failure): Oh God. Not yet, please. NO!
2. Sept. 2004, At diagnosis, “Oh honey. It’s cancer”: Oh God. It’s here. How do we want things to end? Make peace with everyone. Be kind. Be together. Quit my job. Find meaning and never do anything I don’t want to. Touch. Don’t let go of my child. Intense shock. Awe. Sadness. Always knew it would come first for him, but not now, not when our child needs us, not when everything is in flux, let’s say goodbye first and settle everything.
3. Oct. 2004, Dr. Schmaltz: We’re learning about how to deal with this terrible system, but since Gavin is feeling well and we seem to have some options, death seems pretty far away. Then again, what we don’t know scares us, so we only look one step ahead. An important survival tactic that lasted a long time.
4. Nov. 2004, first surgery: He could beat this, but the end is closer than I had hoped.
5. Jan. 2005, looking forward to IL-2: This could work, even if it did, the disease could recur, but would buy us a few more years.
6. Feb. 2005, rejected from IL-2, take low dose IL-2: This could buy us some time, but not as much.
7. Oct. 2005, spine about to collapse, insensitive doctors: How did those assholes miss this. He could die from their negligence. The surgery offers increased quality of life for however long he has left. I know he is going to die.
8. Oct. 2005, during the second surgery: He’ll pull through this but it’s brutal now. Is it worth it for increased quality of life for a little bit of time? (Maybe a year).
9. Oct. 2005, lost X-rays delays radiation treatment by 3 weeks: Those assholes! They are taking MONTHS off his life.
10. Nov. 2005, recovery and radiation. He’s having fun finishing paintings for a show. He’s taking good care of himself and having fun with SS, but very fatigued. He is not on treatment. Sense of dread. We are trying not to look.
11. Dec. 2005: anticipating Nexavar. Real hope. He could get another year of good quality of life and do some work and have some fun. We could say goodbye leisurely and just.
12. Jan. 2006, on Nexavar: Thank God it was approved. But he is so unhappy. If this works, this could be the miracle, but will he be happy enough if “this is life” on the drug?
13. Jan. 2006: He thinks the drug can cure him, but it won’t rebuild that part of his spine that the tumor ate; he will always have a cane.
14. Mar. 2006, follow up about spine about to collapse again (one strut of prosthesis broken): Insensitive, incompetant, lazy, awkward, covering-up damn doctors. You fucking jerks. I wish we’d never met you.
15. Apr. 2006, not letting anything slippery on the floor, with a 2 year old and no other able bodied adult ever around: If I can keep him from falling, things might be okay. Dealing with disability, pain, the prospect of another reconstructive surgery when the first one failed and nearly killed him, he couldn’t take any chemo while recovering. This was the thought – not death.
16. Apr. 2006, anticipating Sutent: It’s not as powerful a drug. Maybe it will give us a few months. Nexavar worked great – marked reduction – but new tumors growing.
17. Apr. 2006, Kat visits for a lovely, sunny afternoon: Much later, she observed that death was present then. I asked her if death was like the elephant in the living room. She said, no, it was more like a kitten. Every now and then, it would need attention and one of us would reach down to pet it.
18. May 2006, possibility of second primary: These things are so much larger than I ever imagined. Can’t deal with learning about and advocating for another cancer. Please don’t say “lung.” I’m ready to give up, can I die too? I could. I know I can’t stay here and do this again.
19. May 2006, on Sutent. Please bring us a few more months with no symptoms that ruin life at the time.
20. May 2006, shingles, thrush: Oh God. Are these nuisances or signs of immune system collapse and the impending end? I am angry at him for quitting Nexavar, what is life in bed compared with death? He is not being reasonable given the choices before him.
21. May 2006, we take a desperate, spontaneous vacation in WV, SS scratches his cornea: I tried to make things nice, but there was not that much I could do. He was in pain from this minor, minor injury done by his greatest love at a fighting bedtime. He was helping me by helping to put her to bed.
22. May 2006: I am pretty sure he’ll make it to his birthday (July), but possibly not to mine (Sept.), and not to our tenth anniversary (Oct.).
23. May 2006, the last two weeks (“The mediastinum is….full.”): That’s no big deal. We already know that. He’s been coping with these same challenges for almost two years. I don’t know what death is or how it could or would happen. I don’t understand what’s happening despite a sympathetic doctor and many explanations. I don’t believe it, I don’t listen, I don’t undertand, I get lost in details. Agree with Gavin mostly, but still know I have to hide some things from him. Mixed feelings about doing this.
24. May 2006, the last week: I can do something. I bet there are still treatment options that would make things easier. Perhaps I can get a few more months out of him. He won’t be happy living in bed, but it’s fine with me, who cares what he wants. We'd be able to say goodbye.
25. June 2006, the last two days: I tell visitors to “Tell him you’ll take care of us and that he is free to go if he needs to.”
26. June 2006, the last hours: I can’t do anything. He deserves peace. I want him to be happy but I want him to be here and I can’t do that. Too bad he believes there’s nothing beyond. I know death is real and forever.

How I think he thought about death at different times.
1. Sept. 2004: I will live to see SS’s first soccer game. (So I was reluctant to even let her kick a ball as an infant).
2. Oct. 2005, Dr. Schmaltz: If you think I am just going to give in, you are wrong.
3. Jan. 2005: I will be around for 22 more years, MINIMUM.
4. Feb. 2005: I will see SS graduate from college.
5. Feb. 2005, rejected from IL-2. Nonsense. My heart is perfectly fine. The doctors don’t know my body.
6. Oct. 2005, after reconstructive spine surgery: This is the hardest thing I’ve ever done. I always win out of sheer dumb persistence with blunt tools. Blunt determination. I’m stubborn. My body is amazing. God made it right but with cracks, but they heal.
7. Jan. 2006: With this new drug, I can be whole again. Miracles do happen. I won’t even need a cane, I will be strong again because I will work hard at it.
8. Feb. 2006: I don't care if it's working, this is NOT living. I am quitting the drug.
9. May 2006: Those people don't know anything. I do NOT have a second type of cancer, I would KNOW if I did. This one is just responding weird to all these new drugs. It might even be a good sign.
10. May 2006: I just want my eye to stop hurting.
11. May 2006: I just want my mouth sores to heal, I just want this dry feeling to go away, I want to be able to eat and taste again without pain.
12. June 2006, the last week, in hospice: Just get me out of here. Why does it hurt so much?
13. June 2006, the last two days: You say you want to help, but why am I still in this place?
14. June 2006, the last 12 hours: Silence, but struggle. He seems to be sorry, seems to reach toward my touch. But I'm projecting, he hasn't been here for hours. I play Joni Mitchell and Leonard Bernstein instead, stupidly, of Patti. But it's not him. It's just barely him. Now it's not even that.

I am fascinated with this paradox of denial, of death in life. I feel like Oedipus who by knowing, for seeing, had to remove his own eyes, but stay in the world with that injury, the loss, the knowledge of that guilt.

We lived these beliefs and they flickered and changed every day. Looking at death so steadily, and only seeing glimpses, and not sure whether I wanted to see or not. You can't look straight at the sun. Come into the light. You can't fly at the sun with wax wings. Your soul will be free.

I look back at the bloggers with dying spouses and what they thought and did in the months and days leading up to the "event." I compare, I contrast, but I'm in a fog, part blind. Was the therapist right -- were we typical? Does that matter? Could we have done it any differently? How do you stay together when one of you is leaving?



A Less Urgent Blogger

I'm somewhat ashamed to be using this immediate, vivid, fast format to process things that happened several years ago. I'm jealous of the urgency of some bloggers who tell the truth about their daily lives each day, and get feedback on what to do. People who make real friends around them in fake space. Women with book contracts and Moms with ad revenues.

I'm almost certain my "new normal" life is going to be boring, and I hope it will be so for a long, long time. I plan to improve myself and raise my child, and remind my inner child it's safe outside.

This life is no story, compared with the horrible medical mishaps and misaligned relationships while my husband was dying -- or the tales of virtual sexual dysfunction spawned by my brief, thrilling foray into the world of 40-something single men.

Now, THOSE are stories. And they will come. I will write out the buried wounds, I swear, as time passes. In the meantime, be patient with me (since I'm not patient with anyone) and come back another time.



Three Girls, and You Can See They Tummy

SS asked me, "Play that song, I was dancing to it with Nellie."

What song is it?

"You know, it go, '(unintelligible) girls, (unintelligible) girls' like that. A girl singing."

I look back and the last played is "I love the nightlife" and then "Call me." At least they are girls singing.

"That not it. Let me see the picture."

That's the other iPod, this one doesn't show the picture.

"YOU KNOW IT! It three girls and you can see they tummy." I was sure it was some teeny-bopper thing, but there is so much stuff on there, and her temper was short, so I gave up.

When Nellie next showed up, we had the answer -- "Typical Girls" from:

I should have known. It was my favorite when I was 16, Nellie's age.


Why Wednesday, and Why in your Kitchen?

Because we're getting married soon, for tax reasons, and that day, at the minister's convenience, and in our kitchen, so we don't have to call it a "rental" and pay a fee.

Today's sermon was a funny, snarky one on marriage whence this quote from Kahlil Gibran:

Love one another, but make not a bond of love:
Let it rather be a moving sea between the shores of your souls.
Fill each other's cup but drink not from one cup.
Give one another of your bread but eat not from the same loaf.
Sing and dance together and be joyous, but let each one of you be alone,
Even as the strings of a lute are alone though they quiver with the same music.

Give your hearts, but not into each other's keeping.
For only the hand of Life can contain your hearts.
And stand together yet not too near together:
For the pillars of the temple stand apart,
And the oak tree and the cypress grow not in each other's shadow.

I like that it mentions the temple, so it sounds a little bit Jewish!

ADDENDUM: Turns out that quote was posed, in the sermon, as one of the BAD attitudes about marriage. I was too moved, busy writing, to listen to the commentary! And yes, that is my beloved minister performed the wedding, with that wording and all.



Native Americans from Mars

Our small friend Hamish is learning so much in preschool. At the holidays, especially. He came home one day last week and told his Moms that the Native Americans did not live on the Earth. Yes, he insisted, they were not on this planet!

Where did this information come from? School! The teacher! A book. He was very sure of it. When it's one of these things, you know that your kid always ends up "right." But whether it's your kid's fertile imagination or small vocabulary or something another kid said that sends them off after a strange idiom, can be a mystery.

Day after day Hamish's Moms tried to discover the source of this problem. They twisted their heads this way and that.

At last, the game of "telephone" was made clear: He had been told that the Native Americans lived "off the land."



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