Sunday, October 31, 2010

D Day Plus 221: (October 15, 2010): Take Me with You

Last night reminded me of the movie “Ground Hog Day” wrapped up in a reprisal of our hit show “Sleepless in Sterling.”

I considered another trip to the ER, but decided to tough it out. Remember how you’d say you “tough it out.” You rubbed off on me. Besides, I didn’t want to go through the embarrassment again of being told it was “mild constipation” and “this too shall pass” without making some progress on that front.  So I went for the big guns – Exlax.  
Dad snored loudly. So I thought I was safe. I didn’t want to wake him. I tried to be extra extra quiet. I jumped a little when I heard the blanket tidal waves across the mattress when I closed the bathroom door and turned on the light. I willed the medicine cabinet door to be quiet.  It wasn’t. It cried out for WD40. I thought for sure I woke him, but I didn’t. Remember how quiet you’d try to be late at night so you wouldn’t wake up Dad?  

I snuck off to our Inspiration Room to sleep on your tan brown recliner. The last time I’d done that was the wee hours of the morning, the day your body caught up with your soul. I took over the night shift from Dad, who stayed up all night with you. I kissed your forehead and told you how much I loved you.  You smiled a little and said, “Me, too.” 

Dad checked on me in our Inspiration Room after he got up.  He said he’d stay home. I said, “Go to work. I’ll call if I need anything.”  

I called in to work again.  It was the same old story, but a different day.  I was glad I sounded pathetic and tired – that way I didn’t have waste any energy explaining.  

I dosed off while Dad clanked and clanged in the kitchen making breakfast. Dad woke me with a big tall glass of Miralax. And he stood there like I was a naughty child so I’d drink the last drop. This time, I only thought about the funny face you made after you finished your glass.  Oh and maybe I thought of a soft rain shower of flashbacks instead of the tumultuous thunderstorms.    

By mid-morning, the Exlax and Miralax combo had met its mission. The waves of pain had subsided to ripples. I even ventured downstairs – the first time since I got back from the ER. I ate a banana and a half a bagel.  It was the first time I’d eaten since my date with popcorn and DWTS.  

Most of the day was a lot like yesterday in our Inspiration Room ­– TV, audible books, and phone calls from Dad, Morgan, and Aunt Janiene.  The first time Aunt Janiene called I bragged about my earlier success in the bathroom.  She asked, “Did it have a face?” (Remember all the times I harassed you to watch “I Didn’t Know I Was Pregnant?”) Anyway I laughed and said, “You're so stupid.”

Aunt Janiene and I talked a lot about nothing until I got really tired and couldn’t talk anymore.  I stayed put on the recliner until the angry fists pounded my gut in waves again. I figured I’d walk it off.  Remember what the pain management doctor told you and me at MD Anderson – walking was the best thing to help relieve gas and keep things in check.   

I did laps around the kitchen, foyer, family room, and dining room. Every so often I’d hold my belly, notice it was swelling, think about how your belly swelled. Then I’d touch one of the pictures of you on the dining room wall, and kiss my fingers, then touch the picture again. I kept the laps and picture kisses up until I couldn’t do it anymore. By then, I was cowered over like the letter C. And I wasn’t getting any relief. I was in pain with a capital P. 

I landed on the floor of our Inspiration Room and managed to sleep off and on – at least for awhile. When I woke up, I was drenched in sweat. I thought about a taking a bath for something like thirty seconds then put my head back down on the carpet. That was the first time I said, “Take me with you.” 

I didn’t call Dad. I didn’t call Morgan. I didn’t call Aunt Janiene. I just wanted to be.  Besides, I’d already told Dad to work late.  I  didn’t want to go to the ER either. I didn't want them to tell me, it was just mild constipation.   

Two hours later, I felt a little better. In fact I asked Dad to pick up some chicken over rice from the Pho place on his way home from work.  I figured that would be safe to eat since I hadn’t been eating much.

Dad delivered the chicken over rice to me in bed around 7:30.  I took one bite and felt really sick.   

“Take it away.” I said.  

Dad asked if I needed to go to the ER.  I asked him what he thought. He said, “I don’t know.”  The rest of the night went like that.  Dad asked me, and then I’d asked him.  I wanted him to tell me to go. He wanted me to tell him to take me.  He did his best to help. He’d check on me a lot. He moved your tan brown recliner to the master bedroom so I could sleep on it.  He’d bring me water. He'd do anything I wanted.  I only had to ask.

By midnight we got into a fight because I tore off his head.  But you know and I know that we normally are calm and rationale.  If we’re yelling and cranky, we’re in PAIN. We’re not mad. We don’t hate them. We just hurt.  

I hurt so much.  I even broke down and took the heavy duty narcotics. I did that even though I was afraid they’d stop things up more and make it worse.  I was desperate. It didn’t make a difference. The pain meds didn’t help at all. 

After my blow up with Dad, things calmed down between us. They didn’t calm down in my body. That’s when I started throwing up violently. After the first round, I tried laps downstairs, thinking that would help. I dropped to the floor in pain and delirium the exact same spot you did – on the hardwood floor in the living room, right next to the foyer.  The pain had really gotten to you too.    

Dad asked if I was okay. I didn’t or couldn’t answer. I just laid there thinking of you in a cold sweat.  I didn’t feel your pain anymore. I knew it – unequivocally. I knew it! 

The rest of the night was a blur of projectile vomiting, dry heaving, and diarrhea. I crawled from my bedroom floor to my bathroom from my bathroom to your tan brown recliner, from your tan brown recliner to the guest bed, from the guest bed to your bathroom, from your bathroom to the hallway, from the hallway to the guest bed, from the guest bed to your recliner.   

Dad checked on me alot, but I didn’t let him know how bad I was. Only you knew. 

I was back in your bathroom lying on the floor, cool tiles cradling my face, when I said it again.  

“Take me with you.”   

I didn’t want to die. I just wanted to know what it was like where you were. Were you happy? Is there something more? I know you’ve shown me signs, but I didn’t know if I was making them up. I didn’t think so. I had faith. But, I really wanted to know.  

“Take me with you.”  I said it again.   

Then I was transported to scenes from my childhood, people from my past, and places I’ve never been before. It went on forever. Waves of pain were replaced with waves of experiences and feelings of love and tranquility.  

The last thing I remember were your whispers, “It’ll be fine in the morning.”

Saturday, October 30, 2010

D Day Plus 220: (October 14, 2010): Alone in the Inspiration Room

First thing I did was call in to work. It was short and to the point. I didn’t have the energy for my normal yammering and storytelling. Last night, I’d bounced between the bed and the floor and every place in between. All the while being serenaded by a snoring symphony courtesy of Dad. Needless to say, I didn't sleep much. Once I even woke up choking on bile, which was gross. That was no stranger to you. In fact, it happened to you a lot – especially when the cancer went on a rant.  

Between the bile and bouncing, I got a taste of what you knew too well – Sleepless in Sterling. It was nothing about a crazy love story with Meg Ryan and Tom Hanks. It was all about the crazy things to do for relief so you can SLEEP – arranging the pillows to body contours, taking drugs for a moticum of relief, firing up the heating pad to help with the pain, walking in circles to help move things along, sleeping on the bathroom floor, or soaking in the tub again and again when nothing else worked.   

When you were SLEEPLESS, I would have done anything to take it away. Anything! In fact, it's been the single thing that still haunted me. Your frantic search for relief, while the peanut gallery stood by helplessly. I wasn't sure what it was like or what you were going through. But, I was starting to have a pretty good idea. I do know, you never left me last night – not even for a minute. 

I cowered like the letter C, walking in slow motion, to our Inspiration Room. I thought of you cowering like the letter C, too. You did it a lot. I always wanted to straighten your back because it looked like it hurt. But I didn’t say anything. You couldn’t help it.  Neither could I.  

Dad asked if he needed to stay home, but I shooed him to work. “I’ll be fine. I just need to get things moving.” I said with my naughty nine year old bathroom humor smile. “Just fix me up with Miralax and let 'er rip.”   

Actually, the thought of going downstairs and fixing Miralax myself almost gave me a panic attack – navigating the stairs, measuring Miralax, drinking it downstairs, then walking all the way upstairs and getting re-situated on the recliner. How could I do all that now? The thought of it put me into a tail spin.  

Dutiful Dad delivered the goods and made sure I drank every last drop. By the third gulp, a thunderstorm of flashbacks of you bombarded my brain again.  It was all the times you had to drink Miralax and the wavelength of pain and relief your rode.  Each image was synthesized with the other. There were layers of you and Miralax in Sterling, in Hospitals, and Houston Hotel Rooms.  It was so vivid and real.   

Dad asked, “You okay Amenal?”  I played it off and said something about hating to drink the last drop of anything and checking for my iPoD, cell phone, and the remote. I also said something about not wanting my computer because it would be too hard to check the mail.   

Dad kissed my forehead and said, “Rest.” He added, “Call if you need anything.”  

I got caught up with some of the shows I liked but stopped watching last year when everything with your stupid cancer went to hell.  First it was Grey’s Anatomy.  Then it was Private Practice.  I got distracted every so often by other distractions like an unwelcome solicitor and check-up calls from Aunt Janiene, Dad, or Morgan.   

I noticed that I always tried to sound better than I felt during the check-up call.  I’m sure you did that too. Even with me. I told you not to. But then again – we are what we are – kindred spirits. We didn’t want anyone to worry about anything – especially us.   

I faded in and out of sleep for the rest of the day. Food was the last thing on my mind.  I thought about the upside of being sick - losing a couple of pounds. My belly was getting just wee bit pudgy no matter how much I Zumbad or P90xd. I didn't ever dare say it out loud, because then Dad would go on about me getting too skinny. And that I was crazy. But, I was only trying to find something positive about feeling so awful. Maybe a couple of days without food would do the trick. A flat belly could be an upside.  

Another upside was getting the chance to reconnect with you without the fear, loss, or forced okayedness. I was on a journey of discovery – not about you – about me.  You were only along for the ride.

Friday, October 29, 2010

D Day Plus 219: (October 13, 2010): Part 2: Déjà vu

From 10:30 to 11:30, I did whatever I could to get some relief.  But nothing worked. Flashbacks of your pain kept bombarding my brain like a thunderstorm.  The more I tried to stop thinking about you, the worse it got.  Every stab of my pain was a reminder of yours. 

Déjà vu! My pain came on as suddenly as yours.  Yours started suddenly the day after you came back from Houston.  It was after you found out the trial wasn’t working.  Then, I thought your pain was brought on by stress and if you were more positive or relaxed, you’d get better.  Now I know better.  Sometimes, it just happens. 

Around 11:30, I broke down and called Dad.  “Take me to the ER.” I said. “I can’t fart or anything.  It hurts. Something is really wrong.”  Dad laughed because I was so blunt, but promised to get home ASAP.  He knew from appendicitis, when I couldn’t break wind, something was really wrong.  You knew that too.

I waited in my Inspiration Room.  Actually, it was your room that I repurposed.  I was in the tan brown recliner doing whatever I could for relief.  But nothing worked.  I thought about listening to a healing meditation, but bagged the idea.  The thought of walking down a healing path with Kelly Howell only made me mad.   

Remember, how I’d beg you to meditate to allow the healing.  Now I know it wasn’t the time or place when I suggested it.  I was only trying to help.  But it wasn’t mine to give.  While I apologized to you, sweat beaded down my neck. Even though I was sweating, I couldn't get warm.  Wrapping myself in the zebra blanket didn't help. Was this how you felt?   

Around 12:20, Dad opened the front door, so I forced myself to get ready.  I hobbled to the master bath to brush my teeth.  I worried I had butt breath and other superfluous crap like how my makeup looked and whether my hair was combed.   Dad came upstairs.  He told me not to worry about how I looked and that I looked just fine.  I did listen.  I stopped fussing. 

Around 1:00, Dad helped me walk to the ER from the parking lot.  I was really glad I didn’t have to wait too long.  Not like I did when I had appendicitis a few years back.  Then I rocked in the chair in the waiting room for what seemed an eternity, like we did waiting for all of those tests and ER visits. Remember how I’d breathe with you through the pain and imagine that I was taking all it from you. I even called Morgan and Katie to do it with us. And it did work. We got through it when we didn’t think we would or could.

This time I didn’t have to go to Triage.  I guess the tears flowing down my face and having me doubled over in pain on floor beneath the check-in window helped. I was admitted within five minutes. Dad was in firefighting mode and made sure I got what I needed. I was so glad Dad was there for me.  Now I know you really meant it.  It was enough that I was there for you – just having someone to help you over the humps made all the difference.  I wanted to do more.  You said it was enough. I get what you meant now.  I’m a slow learner.

My heart stopped when I saw the ER Doctor. Déjà vu! She was the same one you had for the first ER to the Loudoun Hospital last December.  I told myself, just breathe and that it wasn’t such a big coincidence. That helped a little. Dad didn’t even notice. He was too focused on me and rattling off my litany of surgeries: appendectomy, cholecystectomy, partial hysterectomy and dealing with the administrative guy and all the details about insurance and co-pays. 

Meanwhile the tech finished with my IV prep.  I knew serious pain meds were coming. So I relaxed just a little between the waves of pain that permeated through my lower right abdomen.  I even joked I didn’t have anything else to take out.  The dark humor reminded me of you teasing about everything being okay except for the cancer -- the cancer choking your lower bowels.   

I tried not to think about you and how watching you in pain took my breath away.  You wouldn’t have known, because I did a really good job hiding it.  I didn’t want you to see how afraid I was.  Was this was the beginning of the end? What if we don’t find a treatment?  What if your bowels are perforated again? What if????

I did a pretty good job distracting myself.  At least until the doctor said they’d give me dilaudid for the pain.  More déjà vu! It was the exact same thing they gave you.  Then even more déjà vu!  I had to get the same CT scan with contrast too.  I was a little freaked.  But by then, the pain distracted me from everything. I just wanted the dilaudid so I couldn’t feel anything.  I wanted to be numb. I just wanted it to stop. 

The pain finally stopped when the nurse pumped the dilaudid into my IV almost with a vengeance.  She forced the dilaudid through my veins. And it hit the wall of my stomach with its angry fists.  Then I was finally numb.  You used to say the dilaudid hurts for a few seconds, then “it was good” each time you got a hit.  Now I know. 

The nurse barked some orders for me to drink the big a**ed container of crap for the CT scan over the next forty-five minutes.  I just wanted to sleep.  Dad made sure I took a sip every five minutes or so.  Just like I did for you. 

Some tech wheeled me off to CT scan just like you. I remember the clicking of CT scan and that’s about it.  I really wanted to sleep.  I barely remember getting wheeled back to the room.

The pain meds were wearing off and I wanted another hit of dilaudid.  By then, the results had come back. Nothing significant. No bowel obstruction.  Mild constipation. Prescription: Miralax and pain meds.  Follow-up with doctor within 48 hours.  Return if pain worsens. 

This was the basic diagnosis you had for your first visit too.  It was the beginning of your chain of pain.  And my understanding of the power of poop. And how pain meds only perpetuate the constipation. And how Miralax helps keep it in check.

By then I felt stupid even though I knew it was something more than mild constipation. I’d give Miralax a try and only use pain meds as a last resort.  I knew the havoc they can wreak. 

By 6:00, I was home safe in my Inspiration Room, in embarrassed pain, taking root in the tan brown recliner.  The one you insisted on (so you could get some relief) last February.  Dad left for Wegmans to pick up my drugs.  He asked if I wanted to eat.  I told him no. And I remembered how you didn’t want to eat so many times.  I didn’t understand.  But I do now.

Around 9:00, I forced Miralax down. It didn’t taste bad. It only made me sad.  It just made me think of all the times you had to force it down.  And how I kept nagging you to drink it to help counteract the pain meds -- like you didn’t already know that. 

For the rest of the night, I did my best not to think of you and your pain.  I was even a little glad when I hurt. Because it was nothing compared to reliving your pain through my eyes.  I hated déjà vu.

Thursday, October 28, 2010

D Day Plus 219: (October 13, 2010): Part 1: Losing my Zebra

At 6:30 in the morning, I was somewhere between a memory and a dream, ala Tom Petty from You Don’t Know How it Feels.  I was imprinting the feelings from getting the highest score on DWTS in dreamland.  It was so real.  I was dancing the Tango with some hottie. Dad doesn't have to worry. It was strictly professional.  I wouldn’t have embarrassed you, Dad, or Morgan either.  I was that good.  Nothing like the way I really am.  Sort of like Elaine from Seinfeld.  Remember the episode where she danced at the office party where she looked like a spaz case. That’s how I really dance.  But in my dream, I was so good. 

At 7:30, I was almost ready to hit the road.  I only had to put on my zebra necklace and that was it.  It had been a fixture around my neck since Morgan and I bought it at Dulles Town Center. It was right after we said goodbye to you at the Funeral home.  Your sentimental sister wanted something to bond the three of us.  We decided on zebra pendants engraved with the date 3/8/2010. I thought it was fastened after I put it on. I even tugged it for good measure.  Just to be sure.  

At 8:15, I was driving to the office, guzzling a Diet Mountain Dew, and chewing Dentyne.  Autumn leaves were falling from the trees.  I slowed down a couple of times on Fairfax County Parkway because I thought the leaves were butterflies, but they weren’t.  I frowned but soothed myself by saying “they’ll be back next Spring.”  I decided to appreciate the leaves and how beautiful they were with the sun streaming through the trees -- almost like it was casting a magical spell on all those who noticed.  That’s when I wrote the first draft of the next D Day Minus blog post in my head.  It’s when I dropped you and Katie off at Dulles when you started the first trial.  It was bittersweet for me, because I wanted to go, but knew it wasn’t my turn. I promised to finalize the entry after work and my date with Beto for Zumba.  I was a little hungry and debated whether to pick up an Egg McMuffin from Mickey Dees.  I decided, not!  I felt fat and my stomach kept flicking my innards like a rubberband.  It sort of hurt, but I didn’t think it was a big deal.  Besides, I was excited to get into work so I could be distracted figuring out how to tame Excel to my latest whim. First on my list was thermometer charts. 

At 9:10, I was doubled over in pain and couldn’t move.  Repositioning myself at my computer and attempting the bathroom route only made it worse.  Ten minutes before I was instant messaging and emailing with a distracted vengeance and having fun doing it.  I called Dad on his cell and told him I was going home. "Something isn’t right. But, I think I'll be fine. Go, go to work. I think I'll be able to drive. I'll call if things get worse." That's what I said.

At 10:10, I changed from work clothes to yoga pants.  The chain that anchored my zebra pendant fell to the carpet.  I panicked because I lost my zebra. Between the waves of pain, I searched for my zebra--distracting myself, with the R.E.M.’s song, Losing my Religion. Flashbacks to you  and your chain of pain through your cancer journey started bombarded my brain.  And I wondered what it all meant.