Monday, February 15, 2010

It's been a while. I wish I had better news.

Anybody have an elixir for a broken spirit? Aside from a cure for cancer, Captain Bill could use a shot of that.

But I'll back up a bit. First, apologies for the long hiatus from blogging. I know many of you have asked for updates (even offering to write for me). Although we all suspected this wouldn't be a fairy tale, it's been tougher than I thought to live through and write about it. I'll do the best I can at this point. (Props again to my dear friend Janel for her blogging courage and prowess ... http://all4ally.blogspot.com. Sometimes I read her words and feel like she's saying what I need to say. So thanks, Babe.)

Dad's tumor is growing. It originated on the left side of his head, above his ear. After two brain surgeries, radiation and chemo, summer in Madison, setbacks and seizures, and intermittent batches of good news, an MRI showed that the tumor was under control. Captain Bill's shipmates breathed a sigh of relief. Could we actually beat this? No such luck. A few weeks ago, when Heather was in Ohio, Dad had another seizure and ended up in the hospital. Another MRI showed that the tumor had in fact grown into the frontal lobe. The doctors told Dad that his original prognosis of one year from May 2009 is a reasonable estimate.

The frontal lobe. This is where we mammals derive our higher mental functions. This is the place we park our long-term memories that are not task-based. The frontal lobes are considered our emotional control center and home to our personality. One study from the Centre for Neuro Skills said, "It has long been known that some patients with frontal lobe damage have significantly changed personalities." We're seeing that. This ugly tumor in Dad's frontal lobe is raising hell. His emotions are all over the map. One minute he's irate about the smallest detail -- a light left on too long. The next minute he's weeping and apologetic about his condition. His speech and understanding are severely limited. And the bitch of it is that he's fully aware of his losses. This is a recent conversation we had -- sitting face-to-face as I held his hand:

Dad: How am I gonna do this?

Me: I don't know, Dad. It's so hard. You're doing the best you can.

Dad: No, how am I gonna DO this? I don't know how to DO it.

Me: It's not your fault. We didn't ask for this. There's nothing you need to do, Dad.

Dad: But just laying in a bed ... I don't know how to do that. How can I DO that?

Me: Let's not look too far ahead. Let's think about being together. We'll do what we need to do together -- you, me, Heather and Linda.

Dad: I just love you.

Me: I know. I love you, too. You've told me you love me my whole life. So I know.

After my conversation with Dad, I said, "Dad, can you give me a massage?" So I sat on the floor in front of him, in his chair. He gently rubbed my shoulders and commented about the left one being tight. "Yeah, it is Dad. It's sore." I think helping me was the highpoint of his day. He seemed content -- and himself -- for a minute or two.

He's devastated about losing his independence. Bill is a man of action. He wants to "do" something about this. He does not want his daughters or wife putting on his socks or having to give him a shot of Lovenox in the gut every morning. (Who would?) Bill still wants to be the guy to fix your car, take you for a boat ride, take you on his motorcycle, haul wood for the fire, tease you in good fun. He dreads people hovering over him, feeding him and giving him pills and shots. He's spent 9 months fighting this disease like hell, only to get to this point of hopelessness. My Dad's courage, his optimism and humor, his fierce determination -- it's drying up. He just wants, in his words, "To go outside. To look at my woods."

He can still walk, but the gait is turtle slow and it's tough for him to get out of his chair. He still eats on his own, still takes care of his basic needs. But he sees what's coming. And I hate it as much as him. Linda and I met with hospice on Tuesday. They marched in like an army of angels -- nurse, social workers, spirituality guide, doc. As much as I dread that "H" word, there's nothing else in the world like that organization. You feel like you have another extended family to care for you and your loved one.

And speaking of family, I know many of you are concerned about my lovely step-mom, Linda. She's holding up amazingly well. Because she's an amazing woman. But she could sure use your words of encouragement. Same for my strong and beautiful sis.

I should mention that I'm writing this from Ohio. I got in on Feb. 12 and will leave tomorrow. Scott was in last weekend and left Monday. (Heather comes in next week.)

I knew from the moment I hit the ground in Cleveland that this would be a pivotal week. Dad's good friend Joe picked me up from the airport. Joe's an ex-Marine, soft-spoken and big-hearted. He's helping his single-parent son raise his granddaugther, 2-year-old Shyla, and she was in the back seat with me while Dad and Joe were up front. Dad had little to say, not even too excited to see me -- so uncharacteristic of the Bill who in the past would fly up to the terminal in his Spec B and give me a big bear hug, lugging my luggage and asking about my trip. In that back seat, my head suddenly felt like it was in a vice. I felt a pit in my stomach. I turned to Shyla, who just woke up from a nap in her car seat. I smiled at her sweet face framed by a pink coat and bouncy blond curls. She smiled back and reached out a fat hand, which I quickly grabbed, fully expecting her to snatch it away. But we held hands almost all the way to Oberlin.

And those are the kind of moments I'm hanging on to right now. Looking out at Dad's property, blanketed with snow. Trees stand at attention, getting ready to bud. Talking to my sis. Reading e-mails from friends: "Just checking in." "Hang in there." "Tell Bill we love him." "Nice to know you're smiling from time to time." Feeling Scott's love and loyalty -- and knowing his purchase of a block of 15-year-old Wisconsin cheddar awaits me! Talking to Dad's neighbors, who I've known my whole life, about elderberry pie and horses and winter trips to Florida. Hearing a friendly voice mail from my cousin Mel. Reading. Chatting on the phone with a friend/colleague about our book venture. Watching Lindsey Vonn tear up that downhill run in Vancouver. Music, like an awe-inspiring concert at Finney Chapel in Oberlin. Cousin Molly sending me hilarious Facebook IMs. Eating dark chocolate and drinking red wine -- daily. Running, running, running on a dumb treadmill in Dad's basement. Listening to Mary Jane on the phone: "Mommy, we played a fun new game in gym!" Getting a note from Anna about our upcoming hunt for a family dog: "Mommy, we need to check out the humane society."

Life in bloom.

Oh, and this prime example of family humor and loyalty:

Cousin Gary: Hey, Lisa. Calling to see if I can visit Bill this afternoon.

Me: Oh, we've got hospice coming. Can you call another day? Plus ... you should know that Dad's really been upset and hasn't been excited about visitors.

Gary: Well, I'll call back. But he's got no choice. I'm visiting. I'll have to come kick him in the nuts.

And I shouldn't neglect to mention that Dad's had his share of good moments, despite it all. His brothers-in-law and Scott took him out for breakfast last weekend. His posse. Scott and I took him to the botanical gardens in Cleveland, and I think he enjoyed the tropical heat and lush greenery. (I know I did!) We walked around Oberlin, and Dad shopped for Charlotte's birthday and stopped at an art gallery where he bought me a pair of earrings made of shiny old guitar picks. I took Dad out to lunch with friends, and he laughed a little. His friend Frank stopped by with ash Wednesday Paczcis ("poonch-keys"). We rode around in his sporty Spec B as, from time to time, Dad would mutter, "Punch it," and at the risk of getting a ticket, I'd put the pedal to the metal. "This car hauls ass," he'd quietly say with a slight grin.

When I go back to Madison, my goal is to get Dad's slides scanned on my computer. I hope for my next visit we can sit and look at old pictures. We're so lucky to have a boatload of happy memories. Thanks in large part to my Mom and Captain Bill, his hard work, his dedication to family, his zest for life.

6 comments:

  1. Wow. Thank you Lisa. That was lovely. You're doing an amazing job of supporting your dad and your whole family. I love you.

    ReplyDelete
  2. Lisa, I am so sorry. This is not the update I had hoped for. I will say that your writing is beautiful as always, even when you are writing about something that pains you so much. The sentence that caught my attention the most was this one...'We're so lucky to have a boatload of happy memories.' Hold on to those memories. They will get you through this.

    ReplyDelete
  3. the only thing that got me through this was your smiling face in the picture! I wish so much that you didn't have to hear your big, life loving dad say he doesn't know how to do this. You're not alone, we will all be here and continue with messages, whatever...I hope the slides go well and that you have time to really enjoy them with your Dad. I love you, Lis, take care and have some extra dark chocolate for me!

    ReplyDelete
  4. Beautiful, Lisa. It's such an unjust, non-sensicle thing that's happening to your family, but so beautiful that your Dad has so much support and love around him. I love you, my friend and am praying for continued strength and amazingness for your family connection. Looking so forward to hugging you tomorrow and reuniting you with your girls! Travel safe and please let Bill know the Kochs have him in our prayers!

    ReplyDelete
  5. thank you Lisa -- we look forward to your return home and hope you steal away to Ohio many times in the next few months

    ReplyDelete
  6. Lisa
    Thanks for sharing your story with us. I was thinking that "no blog" meant bad news and have been wanting to talk to you in person. So much of what you said is exactly what I was doing at this time last year with my Mom...even down to the lovenox shots in the stomach. We did those too. But especially not being able to care for hisself...that will be hard for Bill...knowing the wonderful Bill that I do. I wish there was something I could say or do anything at all but know that I love you so much. This is so not fair. We are all praying for God to heal him.

    ReplyDelete