Friday, April 28, 2006

Bad Days

Pt. XIII. Figures.

Ish has a joke about how if you don’t like the weather, wait 20 minutes; then you’ll realize how good you had it 20 minutes ago.

I eventually stopped announcing I was having the worst day of my life. I realized I was just tempting fate.

* * * * * *

My mother was transferred to Massachusetts General Hospital.It is roughly the size of an airport and has every high-tech luxury you could ever want. Maybe God is in technology?

Between my mother being in New Hampshire and her being hauled to Boston, David and I returned to our own home full of sadness. We were aiming to have the house on the market by Memorial Day.

I remember absolutely nothing about being home with David at this time. I know I was devastated. I know I was scared. I know I was confused. I know I kept checking my email to see if Marcus The Wonder Man of Make-Believe had written.

He had. And those emails made me inordinately happy.

* * * * * *

We went to Boston and we stayed with Healy and Brian. I do not recall but I think that David came on the weekends and I stayed for the week (weeks?) or something. It was awful.

The first few days she was in Boston, she was in the ICU and I did not see her then. Healy visited her regularly, going to the hospital on her lunch breaks, before work, after work, all the time. Healy was not sure she would make it out of ICU.

By the time we got ourselves to Boston, she had been moved to a more regular room. She had regained mobility and consciousness but was on tons of morphine and acted much like a very fussy child. She kept pulling at her gowns trying to take them off. She’d say things and ask questions that made no sense. She would come into lucidity, as much as a very drunk person might, and that was worse than anything. She would cry. She would ask what had happened to her. Sometimes she’d ask if she was going to die.

We tried to make it peaceful. Here, let’s watch some tv.

* * * * * *

At one point, my mom had to be taken down to the x-ray facility to have some body scan done so they could know, once and for all, what on earth was going on inside her. This was no easy feat.

Following her operation, she had a tube put into her stomach. A plastic tube that led to a plastic bag held on with some gauze and medical tape. That was my mom’s new digestive system.

She was also hooked up to catheters and a morphine drip. Which meant that my mother had a whole series of new appendages to maneuver and no awareness with which to maneuver them. Imagine trying to explain to a belligerent, scared drunk person that they had to get up from their (sort of) comfy bed and get on a stretcher and get hauled to a tunnel to have tests. And that they had to be careful not to move too much.

Healy and I agreed to help. There were two nurses running the x-ray/scanning facility who were large and ugly and horrible. They treated our mother like chattel and were Healy and I not there...I don’t even know.

They knocked her stretcher into poles, they almost disconnected her from her machines. (The tube from her stomach led to a bag that hung from a wheeled apparatus. If you move my mom but not the wheeled thing, the tube would come out of her stomach. Can you imagine?)

My mom didn’t understand what was going on and they almost couldn’t get the scans done, because in order to get a good read, the patient has to be still. My mom would start shaking and crying because she didn’t understand and the women were getting angry – angry! – at her.

Healy eventually managed to calm Mom enough by telling her some fantastic made-up story about what was going on. Healy and my mom speak the same language.

David was there, too. It was all he could do not to punch the horrible nurses. We’d forever call them Tweedle Dee and Tweedle Dum.

* * * * * *

It was on June 5th that they had the results. Stage IV lung cancer.

Cancer can sometimes crop up in other forms first. The cancer had fucked with her digestive system completely, before the spots were visible on her lungs. But, right, they were visible now.

They told us they wouldn’t be able to give her chemo or radiation until her system healed from the operation. You can’t have a tube for a stomach and go through cancer treatments.

With treatment, they gave her nine months at best. They were being optimistic.

* * * * * *

Obviously things hadn’t been going well, but we still hoped. We were going to hope until someone told us we couldn’t. And then we hoped anyway. Better days had to lie ahead.

5 comments:

  1. There are no words I can say right now. This is incredible, and I am thankful you have chosen to share this personal and painful journey with us.

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  2. My, god. I've been reading this with story with deep interest, because I too married too young, and divorced, and much of what you describe is so familiar. But what you went through with your mother I am going through right now with my best friend. She is 33 years old, and her liver and kidneys aren't functioning, and there's some heart damage they don't understand, and some uteral bleeding they don't understand. She's in the ICU at MGH, and I go to see her almost every day after work. She's nearly lost under the machines and tubes - one night they had an inflatable heated blanket on her, and all that was left of her to see was her face, which is yellow and puffed and aged. It's awful. I forget how many people have been through this same horror. Thank you for being brave and putting your experience out there for me to read - I feel like someone knows what it's like.

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  4. It is hard for me to read this, but it is helping a little bit too. My father was diagnosed with esophogeal cancer last June. He was going to do chemo and radiation then surgery at the Mayo Clinic/St Mary's hospital, probably the best in the world. He had surgery this last September and I remember just waiting... for 14 hours... without any "real" idea what was going on. In the end, one of the surgeons (he had 3 separate "sections" of surgery) came out to tell us that although the cancer had not been "killed" by the chemo and radiation, it had been shrunk. He said that as far as they could tell, they had gotten it all. We were all very, very relieved.

    I remember going into the recovery room/ICU to see him and trying so hard not to cry. His eyes were open and searching, but he was not fully "there". The tubes were there though, they made him look so small and helpless, but I there was hope... and that is what I was clinging to. We had fought the battle and we won.

    He went through a couple more rounds of chemo just to be safe. He started feeling and looking so much better. It was wonderful to have my father back.

    About a month ago I was at work and my cell phone rang... we are generally not supposed to answer, but it was from my father's wife, so I knew if I did not take the call, I would just worry, so I may as well take it so that my mind would be put at ease.... I was wrong... very, very wrong...

    They were calling from Rochester (1st bad sign), they had gone in for his "checkup" and were thinking he was going to get a clean bill of health since he was feeling so good. We were all wrong. The cancer was in his liver and had metastasized. There were no further surgical options left. He could try chemo (which did not "kill" the cancer before), but even with treatment they are giving him 9-12 months best case scenario...

    He is doing the chemo... he is back to being the frail, sick, man that is NOT really my father. I am in denial. I try to go through day by day as though it isn't happening and I dread every phone call. I am expecting my first child and can't imagine him not being there for any of it... the birth... and everything after.

    I am not a religious person, but all I can do now is hope and pray for a miracle... and I know that I am not the only one that is asking, and I certainly don't know that I am worthy.

    sigh...

    Cancer... sucks

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  5. I can't look away from your blog -- I'm swamped at work and still getting lost in reading your chronicles every time I spy an update. Thanks for taking the time to write these stories down and for sharing them with all of us.

    I'm so saddened by what your mom -- and you and your family -- went through with her cancer. My mom had a cerebral aneurysm when I was in college and she survived, but I remember my dismay at seeing her so upset and confused and so obviously feeling *trapped* by all the technology attached to her. Her brain swelling after surgery only made the confusion worse -- both comic in what she said and tragic in that we really couldn't explain things to her in her condition. The nurses were mostly great to her, but we had a few Tweedles like your mom did too -- people who handled her roughly or tried to dangerously contradict the doctor's orders. (Maybe your nursing pair should have been called Tweedle Dum and Tweedle Dumber?)

    The great Tweedle-dumbass sisterhood of nursing also staffed at least one position at the NICU when my youngest daughter was born; Nurse "Peg" (We always said her name like Seinfeld's "Hello, NEWMAN") got angry at my preemie baby for crying with hunger (they only feed thinned formula at first due to digestive problems). Peg opined that our baby needed to straighten up and that we'd have to watch that child's "bad temper." Only good manners -- and my husband -- kept me from rising out of my wheelchair and popping her one. She stopped talking after my emphatic, "I BEG your pardon?" I only hope she was married to the nasty NICU doctor who took one look at our daughter's file and said to us as we were leaving for home (leaving our baby behind at the hospital for several weeks), "Well, you know, she'll never be normal." GRR! Thanks for the note of hope! (And he was wrong.)

    MDeities and Nurse Ratchetts, feh. Some people are compassionate health care providers. Others are just meat mechanics.

    Hugs to you from an IIF. I hope that talking about this period in your life is cathartic for you and that you're getting solid support from your community of online friends. Best - Carolyn B.

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