Wednesday, October 6, 2010

"Then you tell me..."

"Am I only dreaming?"

The nightmare didn't end. I didn't wake up, and the struggle with reality is only beginning. It's been a week since we said goodbye, and my stomach is still in knots.

"I'll wake up tomorrow and I'll start; Tonight it feels so hard."

I don't go to bed until you can argue that it's technically morning. And then I don't get out of bed until it's actually afternoon. Depression? I don't think so. Not specifically. Ennui? Maybe. I really don't know what I feel right now. And my new sleeping pattern is not going to coincide with my return to work.

"When you go, I'll let you be; But you're killing everything in me."

I want her back. But I know it doesn't work that way. I want to shout that it's not fair. But I know life isn't. I want to punch the wall, and fully realize all I'll end up with is a broken fist to accompany my heart. I don't know how to let go, and I'm afraid that I'm not more of a mess right now because I'm not letting go. Am I rationalizing it away as a defense mechanism? Or am I really stronger than I thought?

"I've always been afraid."

It's true. About lots of things. About taking chances. About quitting my job and striking off on my own. About losing people I love. Well, now I really know what one of those is like. But I'm going to try to learn the lesson she'd want me to learn: It will be okay.

"I feel that when I'm old; I'll look at you and know; The world was beautiful."

Over 500 lines in the guestbook were signed at Mom's wake. That doesn't include couples or families or those who didn't see the book. It's not a stretch to say there were easily over 600 people who came to pay their respects and maybe closer to 700. Some friends said they waited for over an hour to get inside. The line wrapped around the inside and the outside of the building. Some people actually saw the line from the street, went to run some errands, and came back later. (Mom would have enjoyed that.)

I'm lucky in that I don't have to wait till I'm older to appreciate the amazing woman that my mom was. The hundreds of people who came to pay their respects were proof. Not only friends and family from near and far. Her fellow teachers who all came out to say goodbye. Who helped us clean out the stuff in her classroom. Her former students and their parents. Our neighbors. Even our mailman came. The countless mass cards, letters, notes and emails. The food that seems to materialize from nowhere. The packed church. The overflowing cemetery chapel. The women at the bank who all broke down in tears when we told them that Mom passed. The amazing support from complete strangers.

"You say that love goes anywhere; In your darkest time, it's just enough to know it's there."

I can't begin to thank anyone who has shown us support. Our family and friends. The people who have stumbled across this blog. Woody among others--who I've never met or even spoken with aside from comments and comments about comments--who all leave me kind words and support. This is the darkest time of my life. The most painful thing I've had to face. But everywhere I turn I see love. A "thank you" doesn't cover that.

But that's all I have.

So thank you.

And Mom would thank you too. Her family was her world, and the support you have for us is support for which she would be forever grateful.

"Then you tell me..."

Here's to tomorrow.

Monday, September 27, 2010

"And the time such clumsy time, in deciding if it's time..."

Mom died on Saturday night. To write those words again tears another hole in my heart. Another void in my stomach.

I'm numb. Or in shock. Or both.

She was supposed to die on Tuesday. Then Wednesday. Every day the doctor came in and told us, "Not long now." 24 hours. Tomorrow. Soon.

"We can't do a thing but wait."

The hospital room was packed. Bed with mom. Chairs surrounding with her children. My father. My aunt. Our friends. We slept contorted and twisted and draped over the bed, holding on to her hands, her feet.

"When the big hand goes round again."

For 5 days my mom lived on love and determination.

After some discussion, we left the room on several occasions to have what would pass for family dinners in the hospital cafeteria. At first we thought maybe she was waiting for us to leave before she would pass. Towards the end of the week it became evident that she wasn't waiting for anything. She just wouldn't give up.

"You can lose yourself in your courage."

I voiced that opinion Saturday morning. Mom never had any intention of stopping. She kept going until her body couldn't. To sit for 5 days and watch you mother die... I guess I don't have a right to talk about what's tough or not anymore.

The doctor and nurses told us she has a strong heart.

Yeah, no kidding. We could have told you that. As if it was some astounding diagnosis. As if it was some great revelation that could not be explained. If it wasn't for the aggressiveness of the cancer in her liver, making chemo impossible, Mom would be here right now.

(Fuck you, cancer.)

"When the time we have now ends."

I held my mom's hand as she died. I held her hand.

My mom died and it hasn't even begun to sink in. What are we going to do without her? What am I going to do?

"Can you still hear the last goodnight?"

My mom died and I held her hand as she took her last breath. I felt her hand get cold. I saw her expression change. I lost my mom.

"Close my eyes and believe where you are, an angel for me."

Tuesday, September 21, 2010

"May angels lead you in"

I have been here a week. My mom for two. I think I speak for my family when I say we've run the gamut of emotions. We've been hopeful an scared. Happy and sad.

The same couch. The same exact spot. Except this time the pit in my stomach isn't going away. It's going to turn into a hole that cannot be filled.

"May angels lead you in."

My mom is going to die. There isn't anything else they can do for her. Unless she becomes the object of a miracle, the doctors have given her 24 hours. My mom is going to die and my heart is broken.

"I never said thank you for that..."

But I got a chance. Yesterday morning, after a very difficult and pain-filled night and before the fever and situation that would exclude my mom from anymore treatment, we had an opportunity to speak with her. Each breath was a struggle, and each exhalation was accompanied by a moan. Her eyes were squeezed shut and she was in a whole lot of pain. I asked for a moment alone with her.

When I smoothed her hair with my hand and gave her a kiss on the cheek, I told her I wanted to talk to her. She opened her eyes. Her beautiful brown eyes, now sick and yellow. I tried not to cry when I told her she was so brave and strong. How she taught me to be brave and strong. I told her I try to make her proud, and she told me, "Always." I told her I hope I don't disappoint her, and she said, "Never." I told her that I love her, and she said, "I'll always love you."

I am sure that I am unable to fully appreciate that minute-long conversation right now. But I'm confident that in the weeks and months and years that will follow, it will probably be one of the most important conversations of my life.

A little while after this, she developed a fever and started shaking and moaning uncontrollably. It took a long time before she was drained of fluid, comforted with warm blankets and soothed back to breath-moans. Then my mom sort of regained some consciousness. I remember when is now a long, long time ago, writing about having to shave my mom's head after her first round of chemo. I thought that was going to be one of the most difficult things I would ever have to do. I was wrong. I'd shave her head from now till kingdom come if it would have prevented what happened when she tried to talk.

Keep in mind, my mom has not had anything to eat or much to drink in over a week. Sure she's been able to down part of smoothie or shake here or there, but much has had to rely on the now-removed feeding tube. Her throat is sore, and her lips and mouth are perpetually dry. Not to mention all the morphine in her system, or whatever stronger pain killers and anesthesia that never left. It's hard for her to talk. Or it was.

"I'm so sorry."

Heart sinks to knees.

"I tried so hard."

Tears burst from our eyes and hers.

"I tried."

We all told her how proud we are of her. How brave she is, how strong she is. How she has nothing to apologize for. How she did wonderfully. Perfectly. How amazing she is. How she showed us to be strong and fight. This time I can't speak for the family. But a part of me died I think.

And then another part when she struggled to say, "I love you guys." Over and over and over. "I love you guys so much. I love everyone so much."

I don't know how many times she said it. And I don't know how many times each of us assured her that we know, that we would tell everyone, that we love her too.

My biggest fear now is my mom's afraid of dying. Afraid of leaving us. We are her life, and she would do anything for us. Pardon the phrase, but it kills her to know she won't physically be here for us. After all, it kills us too.

We did our best to calm here and share our love with each other, and eventually she fell asleep. Her moaning stopped and her anxious breathing slowed. We continued to talk to her for the rest of the day and through the night. After a while she stopped opening her eyes and responding. But we still talk. We still tell her we love her. That we're proud of her.

The night nurse told us her heart is strong. We could have told her that. Even today, her heart is strong. Her vitals are even pretty good. It's her liver which has given up. Her bilirubin continues to climb. Her stomach continues to fill with fluid. I still cannot believe we have to sit here and watch her die. Watch her strong heart stop beating. I don't know how I'm going to do this.

"And if you were with me tonight, I'd sing to you just one more time..."

I can't sing to save my life. But she will be with us tonight. Just one more time. I hope and pray I won't forget to tell her a thing...

"A song for a heart so big, God wouldn't let it live."

And it doesn't look like he's going to.

I don't know why I've been writing this blog. I don't know why I've been blogging about one of the most difficult and intimate parts of my life. And I still cannot believe I'm talking about my own mother...

I don't know how I'm going to get through this. But I know she taught me well. And I have to do her proud. I told her I'd always talk to her. Always count on her. I don't think she'll mind.

I love you, mom.

Saturday, September 18, 2010

"Fear prejudices Courage"

The oncologist did not feel it was right to begin my mom's chemo treatment yesterday. Between the general malnutrition, the feeding tube, the narcotics intolerance and PleurX drain surgery, I can't say I blame him. He wants her to build up strength over the weekend, and is looking for some of her counts to level out (calcium too high, hemoglobin too low, etc).

"Keep your fears to yourself, but share your courage with others." -Robert Louis Stevenson

I am trying my hardest to do this. I read my family the riot act before they arrived yesterday: NO crying in the room. NO negative emotion. NO arguing. NO "what ifs" that lead us down the path of the unthinkable. I held my mom's hand while she was in pain, rubbed her shoulder, stroked her hair. I did all the same things I've been doing all week and tried to show them to do the same. I told them she needs us to be strong. I need them to hold it together. They are.

"To fear is one thing. To let fear grab you by the tail and swing you around is another." - Katherine Paterson

That mistake was made a couple times this week, although the second time wasn't as bad as the first. Wednesday, when I walked out of this room nearly torn apart, I thought I was hiding it well. But it had to be written all over my face. The woman from housekeeping looked at me and asked if everything was alright. For the first time in a long time I think I answered that question with "No." And she hugged me.

"There is a time to take counsel of your fears, and there is a time to never listen to any fear." -George S. Patton

When I stop to think, I'm still in shock. How is this happening? How is this possible? It's just so unbelievable. I'm watching the nurse adjust my mom's feeding tube. Her IVs. My mom's feeding tube? Why does she have all these tubes running into and out of her? My fears did not offer any counsel that I wanted. Nothing the I will utter out loud or type on a keyboard. My fears did nothing but make my stomach sink and eat into my gut and fill my mind with terror and denial and grief. I wage war with them every minute to keep them at bay. Sometimes, somehow, I'm successful. I block them out. I am confident and strong and calm. Sometimes.

One minute, I fear what will happen tomorrow. Will she continue to get stronger? Will she stay awake longer? Will we get her out of bed? Or will a test show something else wrong? Was something that was strong begin to falter? And what of Monday? Will the oncologist change his mind? Will she not be strong enough? It's funny how those are "What ifs" disguised as guesses...

But I fight back. I told my mom that today she was so much better than yesterday. And that tomorrow will be so much better than today. When she says, "I think I'm doing better," I tell her, "You ARE doing better." When she moans, "I hope this pain will go away," I tell her, "This pain WILL go away." I try to be ever-watchful of her words and slay her doubt as fast as they tumble from her dry lips.

"I want to get better" becomes "I WILL get better."

I wonder who would be amused now to see the self-proclaimed realist, but often-accused pessimist forcing himself and others to be positive. Forcing himself to have hope and faith and courage.

I wonder who would believe that he actually feels it, because there are those times when he genuinely does.

Here I sit. In this room. Watching my mother sleep. She WILL get better. I told her she would. And I won't let her forget it.

Our next hurdle sprints to us. We need to be strong enough to overcome it. If you are reading this, pray for us. Think positive thoughts for us. Help us. We WILL do this.

Thursday, September 16, 2010

"Think like a man of action, act like a man of thought"

I will have more to say about this one later...

Wednesday, September 15, 2010

"Sometimes even to live is an act of Courage."

Here we are again. The same couch. The same scene. My mom has 30 minutes left before they take the feeding tube out in preparation for tomorrow's surgery. I woke her up just long enough to ask if she wanted a last sip of water. She didn't. But she did whisper, "I love you."

This morning was a nightmare. The attending physician undid all the hope the oncologist gave us yesterday. I heard what he was saying from the moment he sat down but I refused to believe it. I would not swallow it. And for the life of me I couldn't figure out why he didn't just say it.

How many ways can you tell someone, "I'm sorry, but there is nothing more we can do" before you just have to say, "She is going to die."?

Apparently a lot.

How many times can you convince yourself you are composed enough to make a phonecall before you break down?

Apparently only once or so, and only after you broke down on the five or six previous phonecalls.

Hope ran out on me early this morning after being chased away by the doctor. Faith deflated and crouched down in the corner. Fear and Despair hugged me tightly while Anger patted me on the back.

How many strangers can hug you in one day while they watch you quietly fall apart?

More than you can count.

But then how many people tell you not to listen to one doctor? How many patients tell you he is wrong? How many caregivers tell you not to lose Hope?

Barb upstairs? She had three months to live nine months ago.

Mary from Maryland? She went to bed every night for weeks after saying goodbye to her family because she was supposed to die before morning, but the sun is still coming up.

Jimmy next door? His wife had only three months to live. Eight years ago.

Once I told a good friend of mine that there wasn't enough time in our lives to make all the mistakes ourselves. That's where that whole "learn from others' mistakes" come from, right? I learned a lesson today. There's not enough time to learn when it's okay not to listen.

I saw Courage today, but not beside me. Courage was standing next to my mother when the doctor (who I'm not listening to) came in and asked my mom, "Do you want us to make you comfortable, or do you want to proceed with the oncologist's plan?"

Courage put its hand on her forehead, because she didn't skip a beat when she announced she wanted to do what the oncologist planned. Courage smiled when she said she that's what she came here for.

I can't tell you how many times she dosed off during the day. How many times she grimaced in pain. How many times she smiled at my stupid jokes. How many times she tolerated all the "What?" or "Mom, I can't hear you," that I whispered leaned over her face, or the single "I don't know how to be strong" that stumbled from my lips.

Each of those times Courage was there. Sitting next to her. Standing at her side. Hands on her shoulders.

It's funny how sometimes we can't see something clearly until later. But now I'm looking at my mom sleeping in the hospital bed. They are coming to take the feeding tube out to get her ready for the next battle. But there is Courage.

Right where Courage needs to be.

Tuesday, September 14, 2010

"It is such a secret place, the land of tears."

As I write this, I'm sitting in a hospital room in Philadelphia. My mom is laying in a hospital bed, wearing a cheap pair of headphones and falling asleep to a meditation CD on a Coby disc player. My headache has faded, and the pit in my stomach has been replaced with hunger pangs.

While my fingers pluck away at keys on a laptop, my mind is racing like it hasn't done in a long, long time. Depression rises and falls like a wave. With it apprehension and fear and anger. Hope and longing.

What's left of my mom's hair is a mess and still falling out on the pillow. This time more from malnourishment rather than chemotherapy. The light plays tricks with the shadows. Her skin is pulled too tight across her frame, and her port--the port that was supposed to be barely noticeable--sticks out of her chest like a cube of bone.

Rufus Wainwright's version of "Somewhere Over The Rainbow" drifts through my own headphones.

Part of me wants to run away because it doesn't know how to deal. The part of me that never knows how to deal. A part that I hate.

But I don't run away.

There is no beep from an IV drip. There is no mechanical purr of machinery to blow off CO2 from her lungs or alarm rigged up when she doesn't take a deep enough breath. It's just "Somewhere Over The Rainbow" and her breathing. Noise from the nurses drifting through the door. Fingers tapping keys. Stomach growling.

Philadelphia was her second opinion. It turns out it will also be her last chance. Our last chance. The tumor isn't any normal tumor. Why would it be? Look out your window. Do you see that tree over there? Do you see how the branches grow from the trunk, and how those branches extend and grow and have smaller branches and smaller branches growing and extending and reaching into the sky?

Take that picture of that tree with it's almost endless branches, hold it in your mind, and shrink it. Shrink it until it fits not above your liver. Not below your liver. But inside your liver. Those branches? They don't reach to the sky. They crawl along your bile ducts and strangle them closed. They don't shade you from the sun. They prevent your liver from processing toxins. And medications.

My mom is sleeping in the bed with a tube hanging out of her side draining bilirubin from her cancer-riddled liver. But remember those branches we talked about? There are too many. They drain does it's job wonderfully--it drains the bilirubin from the side of the liver it's in. But there is too much. In fact, the organ functions so poorly that fluid drains into her abdomen and her belly painfully swells.

For the second day in a row, they brought her in to drain the fluid from her stomach. It's possible there is cancer there now too, but no one has mentioned it since the possibility was brought up. In truth, until the tests come back, there is no point in worrying about the possibility.

This is the story.

The plan was to drain the liver enough to be able to place a stent or two and help it function on its own. The bilirubin would drop to a safe level. Chemo could begin. Tumor would shrink. Then localized chemo to kill it off. That was then.

Now. The tree is too strong. The stent will never work. Other problems are arising. Like her inability to eat enough to keep the rest of her body working and the fluid pooling in her abdomen. The new plan. If all goes "well." Tomorrow, a feeding tube through her nose. Thursday, a permanent drain in her abdomen. Thursday or Friday, aggressive chemo to be continued once a week for two or three weeks until her body adjusts and a regular schedule can be established.

The nurse just came in to check the drain. My mom stirred but didn't really wake up. She made a sleepy request and I changed the CD in the Coby player. I gave in and am eating half a blueberry bagel. (Blueberry bagel? Seriously?)

I look at her face and I remember wiping the tear from her eye before she went in for the procedure this morning. She cried. I had to leave the room before the doctor told me it was time to go. I couldn't look at my aunt as we walked to the waiting room. It was the only reason we held it together.

Water. All I wanted was some water. And some air. My Klean Kanteen was in the car. I cursed myself with every step there and back. "Pull it together. Pull your shit together."

Suddenly I'm still a little boy. Mothers aren't supposed to cry. They are strong. They are infallible and invincible. I'm a little boy, terrified and huddled in a stranger's body watching my sick mother dying... Is she really dying? in a hospital bed.

But I have to be positive, right? We have to be positive. Take things in stride. One step at a time. One day at a time. We hope and we pray. We put our trust in this hospital with it's cutting edge technology. With it's amazing nurses (who seriously are among the kindest people I've ever met in my life) and it's renowned doctors. With the oncologist who will treat my mom when everyone else gave up. With the surgeon who saw her smile and told us, "I need to make this woman better."

Hope and Faith. Fear and Despair. They are sitting with me on this couch keeping my company. They watch me type. They gaze into her face and look me in the eye. They wave as Regret walks by (yeah, that was from the blueberry bagel...). They will climb under the covers with me. I wonder if they'll stay the night.

My mom is snoring softly. And I wonder if I will find Courage tomorrow.