DI-CEP Daze

In preparation for Wednesday's hospital admission, I'd been relishing every moment of freedom and every moment of feeling good. I went to the beach with my sister; I raked out our back yard; Craig, Sammy and I took a getaway to Newport, RI, where we walked the beach and cliff walk, took in the sites, and enjoyed some great meals.

Then it was impending doom time. I procrastinated packing my food, activity and clothing bags as much as possible. I let out a lot of cathartic screams of frustration knowing that I would soon feel like seething, steaming dog shit again. I jokingly asked Craig the night before I was to arrive at Smilow Cancer Hospital if he would just throw me down the stairs so I could break something so that I wouldn't have to go. As expected, he refused. He told me that my mom would be there the next day and that she would be taking me even if she had to hog tie me. I said that when I arrived at the hospital I would just drop to the floor dead weight so that they couldn't drag me to my room and attack my port. He sighed and made me laugh about how ridiculous I was being and reminded me with little pokes toward all the places that cancer cells still could exist to illustrate that this is why I was going in for this extra chemo. I get the picture, it just doesn't make the process any easier unfortunately.

My mom did arrive Wednesday morning. She was suprised that my bags weren't packed yet but didn't reprimand me. She just said: "Where's that fighting spirit? Let's get in it." We got everything set and made the now familiar 1:15 min trek down I-91 to Yale-New Haven. Once I arrived I was raring to go and ready to get the party started. It's always the night and morning before anticipation that gets me. Once I'm in the setting is when it all kicks in that I have to do this in order to reach a cure.

The 11th floor where I was an inpatient in Smilow has only been open since April 1 so everything is barely used and it smells like the paint and new furniture of a newly constructed dorm room ... not at all like a hospital ... yet. The ergonomic liquid gel recliner they brought in for us still had its tag on and we were told that ours would be the first rears to sit in it. The decor was all nicely tied in with cool grey-blues, creams, light fern greens and pale browns with the same light wood laminate floors with an elegant darker wood border that existed throughout the rest of the hospital areas. The room was huge, very bright and open. Could be a NYC studio apartment. There was a big area with a couch (which turns into a bed) and book shelves by the massive window which overlooked the city (including the back of IKEA) and I could just make out Long Island Sound in the far distance. My room had a large flat screen TV, a personal refrigerator and my own large shower. Not having to share a communal shower and fridge were huge pluses in my book!

However, shiny new things and all, it's still a hospital and four days in it went by slowly and painfully. Sleep was hard to come by with all the frequent checks throughout the night and nausea and fatigue kept me from doing much of anything. I was hooked up to my IV pole from noon on Wednesday through 4pm on Saturday which kept me on a tight leash. The thing continually beeped - rather shrilled - when I turned the wrong way and air got into the line or when it was time for a drug changeover.

The drugs: cyclophosphamide, etoposide, and cisplatin, began each evening around 5pm, preceded by steroids and anti-nausea meds. The chemo dripped for a total of five hours. Then came the Mesna, which served to protect my bladder and kidneys and ran for 24 hours. Then lather, rinse, repeat each night. All of this was piggybacked by constant saline fluid drip so I felt like Big Bertha at the carnival side show. I gained six pounds in one day from all the fluid being absorbed into my tissues. My fingers, ankles and joints throbbed (and I imagine they'll continue to until my body can flush out all of this). Getting up and unplugging my IV pole to walk to the bathroom several, several times a night certainly got old.

I've gotten the most nauseous from this particular drug regimen. Each morning I'd wake up and ask Craig to bring the pink bucket over just in case as I'd call for compozene and await my breakfast which usually helped to settle things. Now that I am at home I am trying to be more proactive about taking the zofran and ativan that the doctors provided rather than waiting for the nausea to be too far gone to be able to stop it. I seem to have it pretty well controlled and am able to pick at little meals and continue to suck back the fluids to flush out all the toxins.

Despite how much I wanted to desperately be done with the whole process, there were - and continue to be bright spots. It's those bright spots that I cling to so desperately in times when things get very dark, very lonely, and very scary. It's amazing what the smile of a familiar face or a glimpse at a budding tree can do for your psyche.

The nurses would unhook me for a half-hour shower and it might as well have been a Parisian Day Spa for how relaxing it felt to wallow under the hot water. When I did have the strength, I was also able to unplug and go on battery pump power and walk around the floor at my leisure. Well, as leisurely as you can walk with a cumbersome pole holding precariously swaying bags of varying weights.

I was even able to convince the nurses to allow me to head outside to the meditation garden a few floors below to do a little off-roading with my pole. I was permitted as long as chemo wasn't dripping at that time and as long as I wore a protective mask and gloves (ala MJ style). So off I went for 20 mins in the sun before the IV pumps started to beep "low battery" and it was back to room 248. I took my father out there with me the next day - though it was quite chilly, only 45 degrees - it felt

good to get fresh air as I pulled my mask below my chin to breathe it in while no one was looking. The meditation garden overlooks the city of New Haven and boasts beautifully woodworked benches and pagoda-type shaded areas, plus a calming and tranquil river that runs through it. It's the perfect respite from the monotony of the hospital room.

I had frequent visitors and a roomie every night as Craig commuted to work from the hospital, so that always makes things better. My mom, dad and sister were there for shifts throughout the stay to make me laugh or nap along with me. My best childhood friend came by with a girly goodie basket, our friend Serena, who works at Yale, made a stop over with the cutest mouse cookies from one of New Haven's most notable bakeries and even Ms. Deta, the biggest spirited art teacher that I know came by.

I even had a four-legged-friend come visit for a few pets and nuzzles as part of the therapy dog program to brighten patient's days. Her name was Roxy. Roxy Hart. Right after her visit both my mother and I were treated to a Reiki session which, as always, was thoroughly relaxing and helped to target a lot of the areas where I was holding tension so tightly. The next day a masseuse came through to work out my kinks in a 15 minute power session. All of these little things mean so much when you're otherwise barely able to focus on a book or flip through even the most senseless of magazines ... never mind having the capability to write. For the first time during all of this, blogging was the furthest thing from my mind. I just couldn't get the strength to do it.

Saturday, I was supposed to be at my college roommate's bridal shower where I was supposed to be fulfilling my Matron of Honor duties, but instead, there I was, still hooked up to the IV pole and aching to get out of there. But being the amazing person that she is, my little Frankie showed up at the hospital room with her step-mom on the way to her own bridal shower after a long trek from Virginia. Though I didn't get to be there to record who gave her what and to facilitate the shower games, I was glad that at least I got to see her on her big day. This chemo couldn't have been worse timing. Unfortunately, cancer treatment rules my calendar right now, and it's an extremely frustrating reality that doesn't allow for cancellations or delays. This must be done now no matter where else (anywhere???) I'd rather be.

I can take major solace in that this is one more HUGE step behind me now and once again I am home. It was wonderful to sleep in our own bed. I still woke up half-dozen times to de-fluid, but it was luxurious to sleep without the beeps, pump motor and monitor noises. I have an arsenal of three different antibiotic medications and two anti-nausea medications. The antibiotics are to treat me prophylactically for any type of fungal, herpes, or bacterial infection that could come up as a result of my white blood cell counts dropping to low. They are thick, white horse pills, so I have to do a lot of mental psyching up before I'm able to choke them down - especially if it's during a nausea wave.

I'm moving, though slow and unsteady. I got a walk in today - partially into the woods at the end of our road, then converted to the easier flat terrain of the street. I'm trying to do a lot of stretching as my tissues feel very sore, especially in my back and chest - I assume as a result of the chemo? Other than that I'm just very lethargic and am happy that this cloudy weather allows me to lay on the couch with a book without having to miss a beautiful, sunny day. Cloudy days are good for healing.

Tomorrow it's back to Smilow at 7:30 a.m. to receive 6.5 million of my stem cells back to boost this recovery process and get me ready for the final round: BEAM in an estimated three weeks. Not sure what to expect for tomorrow except that everyone but me will be able to smell my eau de garlic & creamed corn parfum after my stem cells and their stinky preservative are re-infused. I'm most eager to see Sammy's reaction.