More gallows humor

Today we called up the priest who married me and my husband about 1.5 years ago (we are Hindu).

It seems that the priests who do weddings etc. do not do last rites. So he had us call a special funeral priest (I joked with my husband that maybe it was like medicine and he had to do a special funeral fellowship). The funeral priest told us he doesn’t make arrangements until the person dies, because once somebody’s doctor told him for sure that he had only days, and he went into a coma and lingered another 1.5 months. I joked that he must have been quite disappointed as he had to wait for the funeral fee. My husband asked the priest if he should purchase puja supplies–the priest told him no, that you should not make that sort of preparation until someone actually passes. That seemed awfully impractical to me and then I realized that traditions are all about symbolism, not pragmatism.

I am glad I have my husband. I’ve had difficulty making these calls. That’s why I joke about them.

God knows how much longer. I would not have thought my dad would have been here this long. I hope he doesn’t feel he has unfinished business or something. I have told him many times we’d be fine and to go when he is ready and–as he always told me–to phone when he gets there, if he can, and if he can’t then no big deal. I have held his hand and told him I loved him. I’ve told him I have to first raise my daughter and that I have much work to do here on Earth, so it may be a while until I join him–but that I will come and be with him someday.

Grief and Isolation

Why do we isolate ourselves in grief?

Because you cannot bear my grief and I cannot bear your normalcy…your posting vacation photos on Facebook, your going to baseball games and work, your telling me that you went hiking over Labor Day weekend when we were talking with the nice hospice lady in the hospital room that smelled like disinfectant. Because I don’t really feel like hearing you tell me how your 85 year old dad (who is not a nice person) was just in the hospital, got a pacemaker, and came out healthier than ever.

I guess that is why.

Trees falling in the forest, etc.

If I scream–because that is what I feel like doing right now–and there is nobody out there in the universe to listen, does it matter?

They say “comfort in, dump out.” Comfort those people who have it worse than you, dump on the people who are farther away from the tragedy.

My dad is dying. My mom has worse problems than I do. My husband’s entire existence is his job. My daughter hasn’t yet said her first word.

So there isn’t anyone to talk to, except this blog.

I need to think about how to change my life in the future so that I am happier. After every major life trauma, I have typically found the courage to make some big change. Often it has been a geographic move. I wonder where the dust will settle this time.

Who would have thought that…

…the sweet memories of my own childhood, my own family photos, etc. would someday be painful to look at?

I know it happens after breakups, but those were things I wanted to forget and put behind me, and there wasn’t just loss there but anger and rejection too.

At awful times in my life, my family was always “safe”; they were my safe harbor. I never thought that memories of the times and places when I had unconditional love could someday turn painful too.

Thoughts

Everyone says the same thing over and over: It all happened so fast, so out of nowhere. I thought those were things you said about a stroke, not about cancer. Cancer is supposed to be slow. It is supposed to give you a chance to say goodbye. And brain cancer is supposed to be the sort of horrible thing that happens to other people, a roommate of a cousin; a friend of a former boss, someone you once knew.

My DH and I both work in fields directly related to cancer. DH sits on a tumor board and every other Wednesday he cuts up brains. My dad himself was a cancer researcher. He trained neurologists. How ironic is that? Years ago I used to spend summers in his lab, working on drugs closely related to Temodar. But when the disease hit him–hit us–nothing helped. All any of us could do with all of our goddamn degrees was pick him up when he fell and buy an increasing supply of specialized medical equipment to help with his growing physical challenges. Most of it was only useful for a couple of weeks, because the situation just kept going downhill until whatever previous awful situation we had been in a few weeks ago generally looked quite good. Some of it never made it out of the box.

What do you do with an extra Hoyer lift?

My dad never lost his gentle kindness though, even when he lost everything else. It was the reason my mom married him. The nondenominational hospice chaplain told me it was good that I could find grace where it was offered. I honestly don’t have much use for a chaplain, but for some reason he’s always the one who calls back when I have questions for the nurse, so we’ve gotten to be friends a little.

I have looked up the signs of the end. I wait for the pallor, the mottling, whatever. I keep at my job through it all. I want another baby someday. I will need to save the leave. And yet I feel disloyal thinking of the future and making plans for life without someone I love. The thoughts burst in my head like papparazzi flashes. I think of fleeing the country and moving to a gated community in India; I go online and look at jobs and pick out houses and know that I am never actually going to go. I think of my uncle’s end, many years ago, and of my own end someday. I wonder how naive I was to think that my father might live long, that because I have so little other family and because my mom just had cancer he might be spared. I feel ungrateful for knowing that others have it worse, had less time than I did.

And because I can no longer help it, I write.

I feel like a lost teenager

And I am 35.

Somebody just found this blog via a search on “brain cancer during pregnancy.” My heart goes out to that person, wherever she is.

The happiest moment in my life, I think, was shortly after I’d learned I was pregnant. I was relatively newly married then. I must have been maybe two months along. I was driving home from my vanpool on a warm May day. Maroon 5’s “Payphone” was playing on the radio. I remember being stopped at an intersection. I had the windows down on my Toyota Corolla and was singing along with the radio and feeling the sun. My baby girl was in my tummy. I stopped by my parents’ house on the way home, and drove into the driveway with the windows down and the music loud. My mom was on the last leg of her chemo, which was horrible, but all else was well with the world. I bet my dad took a photo of me on my way out the door, over my protests. He always used to do that. God I miss that. How I miss that.

I remember after the baby was born thinking “wow, all five of us are healthy right now in this moment. God, if you exist and if you listen, please freeze this moment.” It lasted eleven weeks. And it never really existed either as my dad’s cancer had taken root then, we just didn’t know it, because who on Earth thinks that being a little sleepy sometimes is cancer? Those weeks weren’t happy weeks, either…I was torn up from childbirth and sleep-deprived. I lost 30 lbs in weeks and returned to my pre-baby weight…I remember days when I couldn’t make it downstairs to eat breakfast until 4 p.m. The baby would cry, I’d feed her, she’d need a diaper change which made her cry again, and then when the diaper was changed I would have to pump and then it was feeding time again. And that would just go on in a loop for hours until I was too exhausted even to get up. I don’t know why it was so hard. Maybe because I hadn’t been around babies before, or maybe because of the lack of sleep. Or because I had a rough pregnancy.

Anyway, I don’t have that car any more. Shortly I won’t have my father any more either. I had the car 12 years and I can’t remember the details of the car without seeing a photo. I worry sometimes about forgetting my father. I keep turning memories over and over in my mind like worry beads. But I guess maybe forgetting is natural and it is necessary to heal. Along with forgetting I will forget the grief and pain, and memories of pain are never as bad as the pain itself, which is probably why I would even think about having another baby someday. 🙂 Look, I just smiled. In the middle of hell I just smiled.

But anyway, someday I will remember the last two years of my life as years that vanished. I wasn’t able to accomplish much professionally or personally. There was just trauma and change.

I am not sure what is going to come out of the wreckage of all this.