Sunday, March 27, 2011

Rooster My Rooster!

By Saturday the 19th I had absorbed 12 doses out of the 14 intended. I’m glad they stopped. I had been told that the only person in the last few years that had taken 13 doses, had to stay an extra two weeks because of brain toxicity. Dan and I were also told that no one had made it to the 14th dose.

There had been talk of them releasing me that Saturday morning, so I was excited even in my delirium. Dan was holding my hand when one of Duke's leading doctors walked in. I had met him before briefly during an appointment in the previous month. I recognized him right away - like he was a celebrity! - somehow I knew he was the one to OK the release. I could hear him talk -  like an adult on a Charlie Brown cartoon, he sounded like a muted trumpet. I tried to keep up, “Hello, Dr. Kelly Marcom! How are you Dr. Kelly Marcom?”  “Oh, Yes, Dr. Kelly Marcom. I’m ready to go home, Dr. Kelly Marcom!”  “Goodbye, Dr. Kelly Marcom” “Thank you Dr. Kelly Marcom!”

I don’t remember the cab ride home, but I do remember leaning on Dan to get into the house. My hands on his back, shuffling behind him like the sick caboose of a small train. I was tipped into bed, tucked in and waited on hand and foot for every need I had. Dan would get up in the middle of the night to make sure I had my 12AM and my 6AM medications. Anytime I needed to get out of bed, he would be there to help me. We would do the shuffle train so I wouldn’t fall over, and I would thank god for him every-time. If any of you know the Charles Portis book True Grit or have seen the new Coen brothers movie; there is a scene that is my favorite:  It’s the one where Rooster Cogburn is riding through the night with Mattie Ross, delirious, across his lap in the saddle. The horse is whipped into running harder and harder, the night sky is spinning around in Mattie’s eyes, spurs are digging in to keep the horse going, the sound of labored breath and the galloping hooves are the only thing audible until Rooster brings Mattie to the safety of a cabin where she is saved from her snake bite. It is a beautiful, surreal scene that's emotionally hard to watch. The determination that Rooster has to not let Mattie perish makes me cry every time I think of it.

Dan is my ‘Rooster Cogburn’ , though I can attest that no animal has been, nor ever will be harmed in the saving of myself.

The Meaning of Life Behind Each Blink

I was woken up at 2AM to be given my second dose, I felt woozy and on the way to the bathroom I blacked out and fell. The next thing I knew there were about 4 nurses pulling me up off the floor, hoisting me back onto the bed. One of them wouldn’t let go of my arm and when I looked over she was slapping a bright yellow ‘Fall Risk’  bracelet on me.  I didn’t feel very well, my mouth was already starting to get extremely dry as the night nurse hooked up bag number two. At about 4AM it started again with inner core coldness. I switched on my heating pad and tried to sink, and push myself into the heat, but morphine and toasted blankets were the only thing that would tame my violent shaking. This is the cycle that was to be every 8 hours for the whole 5 day stay.

Each day I grew weaker and my mouth felt like it was full of semi-wet  corn meal. My teeth tasted funny and felt like they were puffing up like densely coated cheese puffs. I forced myself to eat and drink water. Everything tasted of stale medical vapor. I tried to entertain myself by watching kids movies on the DVD player. The first movie took me two days to watch.  I couldn’t focus well and I kept getting interrupted by various staff members checking up on me. Dan would come to sit with me every day; thank god for him to keep me company - though I wasn’t much company to him. It must have been hard on him to see me change from who I am to a weak ghostly version of myself.

The days blended together, there are little things I remember like my ‘Fall Risk’ bracelet getting too tight. I had gained something like 20 pounds in water. My eyes were swollen shut. I made sure not to look at myself in the mirror, because I didn’t want to see that I looked like what I felt like. The few times I did take a peek, I didn’t recognize the Play-Doh version of me. My head looked as if it had been cranked out of the square hole of the Play-Doh Mega Fun Factory. I had become a red cube head, with no features - the tussle of black hair was the only thing I recognized. I had a swollen puppies tummy that was so uncomfortable it made it hard to sleep - too bad that’s where I took most of my Heparin shots. I still have bruises.

I kept the DVD player going day and night - it got easier to watch, it became great company. The thing about it was, that as the days went on - I started to see things behind the images. There were bright yellow, trimmed in black, triangles and rectangles holding all the images in place. Each particle of an actors face was hinged on one of these geometric shapes. I could only see them when the scene changed or when I blinked. I noticed as I reached the higher numbers in the amount of doses I took,  I could see there was something behind everything that existed when I blinked.  Maps, formulas, and equations squashed in-between the spot where your upper and lower eye lid meet. These images showed how everything is put together, how all things work - the secret to life if you will.  I kept thinking that's so much information for one person to know. How could I possibly retain it all. So when Dan popped in to watch over me I tried to forget about it and instead told him of my animal friends waiting for me at home. Dan asked which friends? And I replied, " Beaky (our sweet parakeet),  and you know, the furry hippo!"  Dan just laughed!

Letha's Wild Ride

It’s been 7 days since I was released and I’m so exhausted I haven’t been up to writing, calling, or even mild facebooking.  I went out to the end of the driveway to see if we had any mail today, and by the time I got to our three step porch I was thinking of calling out to Dan to have him help to get me all the way back into the house. The whole trip was futile - as the mail hadn’t come yet.

Both Dan and I hardly slept the night before going in for my 5 day stay of Interleukin 2 treatment. We had an American Cancer Society’s “Road To Recovery” volunteer drive us to the Morris Cancer Clinic, Monday morning. (“Road To Recovery” is a great program for anytime one can’t drive one’s self to an appointment.) I checked in as Dan guarded my Trader Joe’s ‘overnight luggage’ (the brown one that says, "Sailing the Culinary Seas") and Harris Teeter re-usable bag of food.
Then, blood drawn, stethoscope to the lungs front and back, breath in, breath out - “OK, you’re set. Proceed to admissions.” 

I had packed my bags so full of things, they were impossible for us to carry  all the way to the ICU in the main hospital. I brought my watercolors, a DVD player, a solid block of DVDs, a weeks worth of food, a heating pad, and countless changes in clothes. We waited about 2 hours for a volunteer to help walk us through the maze of halls to the main hospital, getting lost about twice along the way.  When we got to the 9th floor ICU, I remembered we were supposed to go to the admissions office first. But the bags had been dropped at the front desk, and the volunteer was a ghost of swinging doors squeaking to and fro.

Luckily one of the 9th floor nurses led us to my room and said she would send someone from admissions up to us. What a relief! First I ran around disinfecting every surface of the room with sanitary wipes, then I put my cold foods in the small dorm fridge and arranged my other dry foods on the counter. Dan was watching TV , as well as the streak that was me fly around the room. When I ran out of things to do, I broke out my watercolors. It was the only time I painted while I was there. Just a few dabs and the admissions person arrived. Papers were signed, gown donned, and I slid into bed for the next 5 days. I was nervous and fidgety. We were offered sandwiches which we ate happily. Though, I’m sure the bread was taken from the same 1970’s packet of Wonder Bread that made me a sandwich back in high school.

The first thing on order was for me to go downstairs and have a PIC line put in. This is pretty yucky, so squeamish people close your eyes and don’t read anymore. They wheeled me, bed and all to the 8th floor where there are stall type rooms along each wall. I had been given an anxiety pill 30 minutes before my bed came to a stop in one of these stalls. The PIC line guy was waiting for me. He opened up his sterile PIC kit and went to work. A bit of Lidocaine, a huge needle, a tube pushed from my upper arm to a place just above my heart all inside a major vein - Yes, it makes me squirm too!

My bed was back in place, and waiting for the 6:00 dose time to roll around was pretty tough. Dan had to leave so he could walk home while it was still light out. It was 6:45 before they gave me the first dose. I didn’t know what to expect, and I was scared. My nurse was so nice, there was comfort in the way she  talked me through every little step while hooking up the dreaded bag of IL-2. She said it would take about 30 minutes to empty out into my system. I was trying hard to feel it, but I couldn't really. By 8:30 I was wildly pushing the nurse call button with ice blue fingers, and my body wouldn’t stop shaking. It was a strange kind of cold that came from deep inside me as opposed to some hard stabbing wind slapping you about. The nurse armed with her bag of morphine came running in with three toasted blankets, she whirled around plugging in the drug to my PIC line, inserted the warm blankets between my old one and my body all within a matter of minutes. Somehow the chills went away and I slept.

Sunday, March 13, 2011

It's Go-Time!

I’ll be checking into the hospital ICU tomorrow. I have to report at 9AM and I’m very out of my skin scared. I won’t be having the Interleukin 2 dose until 6 in the evening. So If everyone would think of me at that moment and if possible every 8 hours afterward, through Saturday evening. I’d appreciate it so much!

I know it’s a lot to ask - but if you do happen to think of me - think of how the Interleukin 2 is working for me and how it’s actually killing off my cancer cells. I really think it will help me get through this.  You all have helped me so much already, and with your positive thoughts it will be the hammer that pounds the big C into a little c and knock it right out of my body!

I depend on knowing you are all there rooting for me, as I know you all are. And I know this statement is over the top and over-dramatic, but: I  want to live!  I want to continue to enjoy everyone and everything I have grown to love, all the people and things that make up the fabric of my life;  it’s just too soon for me to leave now. I have way too many projects and things to see and do.

I love you all. Thank you for standing behind me it would be all so much harder to go through on my own.

Love to each and everyone of you,

Life as a Slow Loris

Two weeks can be a long time when each minute is spent diverting thoughts of a hard-going hospital stay from one’s mind.  It’s been a very slow time going for myself and Dan. In order to help us out, some dear friends of mine sent us away to the North Carolina coast. We spent a few days at the beach and walked around Wilmington, so we wouldn’t have to dwell on the up coming days.  Thank you so much for that.

It worked for the most part and we were very happy to be away from home and to be walking in the sun; it was beautiful weather. We looked through the window of the popular ice cream shop on Market St. thinking we’d get an ice cream cone and sit by the water. But when we saw that half the population of Wilmington had the same idea, we went across the street to a less popular shop and got two shakes to go. We found a bench by the river front to sit and slurp our shakes when I noticed a pretty young girl, her handsome boyfriend and a strange out-of-place looking older man collecting next to us. I thought 'how strange' - they were so nervous and jumpy.
   Then an older couple and two younger girls came running towards the three that were standing there. Flowers in the older woman’s arms began to spin the scene in focus for me. I could now see that the girl dressed in white was a bride to be, and the nicely dressed young man was her groom. We were about to witness a wedding by the water.
   It was so sweet to hear this handsome couple accept their wedding vows. I felt a bit like I was intruding on their moment, but I was also so happy to hear the words Dan and I said to each other over 10 years ago. I know it’s sappy, but for me it was a re-conformation of my love for Dan, and a reminder not to let stress and fear take hold of me; and to let myself concentrate on the bright sun, the park bench and Dan’s hand holding onto mine.

My gung-ho spirit has taken a bit of a hit by having to wait the two weeks for my treatment. But if I look at the bright-side - I’m going in with a more open relaxed attitude. I’ll still be a full positive receptor, but I’ll be able to take the ride as it comes. I’ll try not hang on too hard, mindfully forcing things to work, but to move through and on to the next process, if that is what's needed for the Interleukin 2 to work for me.

I never got around to painting at the beach, but on every sunny day we’ve had this week Dan and I have gone to Sara P. Duke Gardens and painted. I finished up two existing watercolors and started a new one of where we sat in the park. Hopefully, this painting in the park will become a habit - we’ll see.

Unfinished Sara P. Duke Gardens:

I also took some fabulous portraits of Glen looking like Woodstock. Sometimes it’s good to be slow as a Loris.

Tuesday, March 1, 2011

'I Am A Full Positive Receptor' - Though The Reception Will Be Held At A Later Date!

Setbacks! Nothing that a little Lorazepam and a few glasses of wine won't fix! Normally abusing drugs isn't my style, but sometimes having a band-aid for the hurt is the right thing to do.

I had passed all my preliminary tests for the Interleukin 2. Maybe the colors weren't flying all that high, but they were flying high enough to for me to be O.K.'d for the treatment. The real problem is they don't have room for me in the ICU until Monday the 14th. That's a two week wait! I'm drumming my fingers!

Yesterday, after waiting the hour+ to speak to the oncologist, he asks me what I know about the treatment and what I expect. I tell him the horrible things I've read on the internet, hoping that he will debunk them as being misinformed scaremongering collected from disreputable sources. But instead he nods his head almost as if he isn't listening to me, but going over a song he's learning the drum part to inside his head. I'm expecting him to shoot down all my misconceptions, but the only thing he nips in the bud is my plan to eat Manuka Honey while I'm in the hospital. It's a raw unpasteurized thing, so I can only use it before and after the treatment ,but not during. Rightly so, it might compromise my immune system.

Meanwhile Doc. Onc. is getting the results up on the screen as I drag my chair around. I look over the results of the test with him, practically perched on his shoulder. I'm about to ask him about the new nodes on the lungs and I make a gesture in that general area coming to a full stop on my right clavicle. And he says "Oh! Yes, Yes! I forgot the right clavicle!" I was so confused! I said,"What? You say there's a spot on my Clavicle?!" I immediately  felt pain surging through my right clavicle  in both directions, up my neck and over my shoulder! He quickly wheeled his finger over the mouse till he landed on a black, white and gray image of my chest and clavicle bones. Yup! There it was, white light glaring in my eyes, looking like a blob that oozed out of a grilled cheese. The pain got more intense, then Dan reminded me of the strain I incurred earlier that day dragging my purse from the back seat of the car up to the front seat. It still hurts. Doc. Onc. says it's nothing  to worry about, it may not be cancerous; it could be an anomaly in the scan. What does he know?! I'm worried.

On the MRI the spots on my lungs are not the Jackson Pollock sputters I saw on the PET scan - I wasn't supposed to look at them on the PET scan. There are two nodes, one for each lung that have grown from 3 mm to 6mm. They're located on the MRI, not on the PET that I looked at - Do I look like a doctor?! So, luckily that's just a case of me freaking myself out while my surgeon was on holiday in Argentina; and not able to give his interpretation. A vacation rightly deserved - he works too hard and too long - and god-bless his assistant who works longer hours than he does! She tried to talk some sense in me over the phone about the splatters on the PET, but she probably didn't know what I was on about with the painting references I was giving her.

So lucky me, I now get to wait two weeks. Well, in the meantime I can eat my Manuka Honey, learn how to do yoga in a bed, train my mind to focus away from pain and my uncomfortableness, and wait for my Anti-Cancer book to come in the mail.

Dan and I will have the time to make a small escape from the house and go to the beach to relax. I haven't been out of the house much since December.  There I can forget that I cried in heaving grief over the fact that I couldn't start this horrible process sooner.

The heading of this passage could have been alternately titled with the old slogan, "Patience is a virtue!"

"Nothing happens before it's time!"

"All good things come to he who waits!"

"Little drops of water wear down big stones"

"A handful of patience is worth more than a bushel of brains."

"Never run after a bus, there will always be another one!"

"Never run in front of a bus either!"

You get it... Et cetera!