Round Two

It was quite disappointing this time around, and I feel it’s almost not worth writing about. I had such a heavy dread about going back in for the second bout. I knew what to expect this time, and I didn’t want to go through it again. But we must do things for our own good, no matter how hard it is to face.
I took a lighter load to the hospital this time knowing I wouldn’t be up to much, aside from sleeping.  I could almost fit everything in to my ‘Trader Joe’s’ grocery bag luggage, but a second bag was still needed for my cottage cheese and flax seed oil. Dan and I showed up at the clinic and got the OK to be admitted for a 5 day stay in the hospital, even though my blood pressure was running a bit low.
 
We went through the proper routing this time by actually showing up at the admittance desk, as opposed to traipsing into the room and setting up camp like country folk. It was a good thing too, because they didn’t even have a room ready. We had to wait. Hmm, where’s the most logical place to wait in a hospital? Where you can get food of course! Around the corner from the admittance desk,  ‘closed!’  - was the main food court! ‘What, now!’ we thought. We saw at the end of another hall there was a Starbucks  doing booming business, brand new and with a line that equaled infinity; we decided to bypass the line, seeing that we could still get into the dining area of the cafeteria. We sat down at a table, resigned to a long wait.

We were summoned an hour and a half later back to the admissions desk, where an escort was called to take us to my room. You could tell that the man, tall, lanky and 60, racing towards us was the escort, mainly by the ugly extra wide wheelchair he pushed in front of him.  Once I was saddled in like an invalid, he expertly wheeled me and my two bags to my room with Dan in tow.  I think Lanky’s top speed got up to 30 mph -  my hair flowing back behind me. He didn’t bang into one thing as we sped through the halls, and when it came to the elevators, it was if I was a puck floating on the cool breeze of an air hockey table; I didn’t feel one bump!

In the room things happened fast, Dan had put away my bags, and I was immediately told to get ready for my PICC Line. The horror! It never hurt - just the idea of the long thing wobbling around in one of my main arteries is hard to take. (Sorry to have brought it up.)

At 6:00 PM I got the first dose of the second round, and typically I got the rigors two hours later.  It felt like no amount of toasted blankets, hot packs or morphine would slow down the shaking.  Eventually I sank into an upped dosage of morphine, and into a deep sleep.  At 2 AM vital signs were taken and it was determined that my blood pressure was too low to be given the second dose.  I took my second dose at 10 AM the next morning, and turned on my heating pad in anticipation of the upcoming rigors. It went like this for the next two doses: Skip a dose, take a dose, skip a dose, take a dose.

The next three days were a blur of nurse’s faces, vital sign checks, and Dan’s comforting visits. The one thing I do remember vividly, is the time they decided to try to raise my blood pressure by putting me on a combination of blood pressure medication and dopamine. My reaction was immediate;the blood raced through my body, the flood gates were opened, all my veins pulsated and shook as my heart rate skyrocketed. The two nurses worked quickly to adjust the medications. They became buzzing apparitions as I became dizzy and overheated. I remember hands coming towards me placing ice packs on my forehead and neck. I don’t know the actual length of time it took to regulate my body into a normal state, but I was scared they wouldn’t be able to do it in time. After that episode it was clear I wouldn’t be taking any more IL-2 doses. It was a huge disappointment even in my glazed over state.


I was sent home a day early. It took time to ween me off the drugs, otherwise I would have been sent home even earlier.  The oncologist on duty gave the instructions on what drugs I was to take at home and when to take them. I was oblivious as usual on the day of release, and Dan was the one to take note of all the information. I just signed on the blanks that were put in front of my face.

We had a different escort going down to the lobby that ended in me being pressed up against a window “So you see the taxi.”  It felt incredibly uncomfortable, as I had been stuck in a slot along two other women who were also pressed to the glass. Dan spotted it - the taxi was already out there. Thank God!

I was pretty weak and out of it, but I remember being shocked at the Jamaican taxi drivers aggressive and reckless driving moves. Already in action he asked Dan where we were going, then continued talking openly and obliviously on his bluetooth. I thought his driving skill’s must have been developed in Kingston, or possibly New York City, because he narrowly avoided at least three near accidents - (that he also, almost caused.) I was a bit scared, so I blanked out the ride by thinking back to Lanky’s wheelchair drive to the 9th floor -  I felt a bit safer. Dan’s plan was to have the taxi driver wait with me in the car while he went in to have the 6 prescriptions filled at the pharmacy. Dan was in and out of the store within a matter of seconds - empty handed! Dilemma! - the pharmacy was closed for lunch and would be open again in thirty minutes. We let the taxi go and Dan sat me down on a bench outside the store's door with my bags at my feet. We waited, and it was nice to be outside. When it was time, Dan went back inside to get the drugs leaving me propped up next to the gumball machines. He didn't take long.


I'm surprised at how much more energy I have being home this time as opposed to last time. I sit up in bed and check my email and am able to write a few too. My side effects are pretty drastic this time. I have been turned into the cartoon figure ‘Droopy Dog’, my face has sagged and wrinkled. I also think  I look a bit like Benico Del Toro in his most haggard stage! My palms have been peeling, I have leper like rashes on my ankles and elbows, I've gained about 14 pounds in water and my right leg has swelled up like the Zeppelin. For the most part these side effects are diminishing and I’m practically back to my normal self, though my skin is so dry and peeling I’m reminded of Peanut’s 'Pig Pen’, with a little cloud of dead skin hovering around me! My new routine is to drink tons and tons of water, and slather myself in Manuka Honey moisturizer. On the 29th of this month I’ll have another PET scan, and then on May 2nd I’ll see my oncologist to determine if the drug is shrinking my tumors or not. I feel really good, and I believe the IL-2 is working. I see a difference in the way the tumor on my leg looks - there’s no way it can’t be working!

As Dolly Sings It - 'Here We Go Again'!

I’ve got two days before the process starts all over again. I can’t lie and say that I haven’t been dreading it. I have, on a very base level. I’m glad I had two weeks to recover - I needed every second of it. There were many things to be done - mundane things. Such as a months worth of laundry, doing grocery shopping; and getting the car jump started on three different occasions, that culminated in a new battery from Sears that wasn’t needed, and $400.00 later a new starter from the mechanic we originally bought the car from. The latter seemed to do the trick, and Dan and I are able to run the rest of our many errands.

Highlights of this weekend are: it’s currently beautiful outside, I’ll be attending a baby shower thrown for some dear friends of mine, I’ll look better in about a half hour (I’m dyeing my hair, so I look my best as a blown up cube-head) and Dan and I plan on seeing a light hearted film tomorrow before I pack my bags.

If I can ask again for you all to think of me through out the week, starting on Monday the 4th, I would be so thankful!  You all helped me so much to achieve 12 out of the 14 doses during the first round of treatment and I’d like to be able to get through just as many this time round.

I thank you deeply for your support!

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.

I AM ALIVE!

Everything hurts!

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,
Letha