Coming Out of the Dark

The clouds have begun to part. Literally. Monday the sun peeked through for the first time in nearly a week and with that sun peeked through my strength and even some clarity of mind. After Saturday night's horrific experience things began to look up. I suppose it's all relative, right?

Sunday I was strong enough to get out of the house and instead spend the afternoon on my parent's living room recliner watching Dante's Peak and USA vs. Canada. I got to see my little bro, which is nice and he even accompanied me on my short walk around the neighborhood. I still felt nauseous and weak but nothing compared to the days prior.

Monday, I drove myself to the Hartford Cancer Center for an appointment. It was a balmy 45 degrees and I had the car sunroof open blaring a Judy Garland Broadway compilation CD a friend had dropped off for me. I felt great in big part due to the fact that I had a good, solid bowel movement. I thought that the moment was deserving of trumpets and fireworks. Though they didn't come, they did play in my head. I felt a million times better. And after the puke, when I suddenly came out of that nausea cloud, it felt as if I'd found my legs again after months at sea. For four days straight it felt as if I had just stepped off the ride at the amusement park that spins so fast it makes you stick to the wall and the floor drops out from underneath you. I always hated that ride. It felt like my stomach was not in my abdomen, but instead in my throat, and that what was in my abdomen was churning through my intestines in a radioactive manner. No. Sudden. Movements.

I even wore jeans and a cute top to Monday's appointment. I showered and put on mascara. These were big steps. I certainly wasn't feeling 100%, but I'd say 65%. Today, we're up another 10 or so percentage points. I joked and laughed with the ladies in the lab. We talked about Justin Timberlake and his Soupville SNL skit. Denise, my favorite, was there to take my blood and she was so concerned about what I was going through. She gets all teary-eyed and always tells me that she loves me. I found out that she's no longer out at the Avon Cancer Center where I'll now be having most of my appointments since it's much closer for me. This was sad news, but I know we'll pass each other.

I met with Dr. Dailey and told him about my weekend escapades with the constipation, the nausea, the vomiting. He was sympathetic and we talked about some new options that we can try for ICE round 2 that might help things, including more steroid and a medical marijuana-like nausea blocker (oooooooh) that he says works well with a lot of young people. Despite my weekend symptoms, he thought that I was doing very well with everything, considering. This was encouraging. My blood levels were still holding okay. I'm a bit anemic but he wasn't too concerned. He wants to continue to check my blood every other day. He expects the big drop to happen this weekend and for my white blood cells to stay low (nearly non-existent) for at least a week when the marrow stimulating effects of the Neulasta shot wear off and the chemo effects really kick in. From this weekend forward I'll have to really confine myself to home and controlled environments. No movies. No restaurants. No big crowds. Definitely no contact with anyone who is remotely sick. If I catch a bug of any sort not only could it delay my treatment schedule but my body might not be able to fight it off. I am not going to let that happen so I plan on heeding his warnings to the extreme.

Then it was time for the Lupron shot. This shot will serve to shut down my ovarian functions in hopes to protect them during the high-dose chemotherapy and to eliminate monthly bleeding as my platelets will be low and there is a risk of hemorrhaging. I'm told that it will also give me menopausal symptoms like crazy mood swings and hot flashes. Depending on how my body reacts I might go on a low-dose estrogen to counteract things. Basically, I'm just a human beaker bottle. A little of this potion. A little of that toxin. Let's get me to gurgle just enough, but not bubble over ... . And let's see what different colors I can turn while we're at it.

My oncology nurse whom I had all during the ABVD, Diane, opened the door with a box in her hand. She had a look on her face like she was a little kid who just spilt a whole gallon of milk on the floor.

"I have a really big shot for you," she said, scrunching up her nose and lips. "I'm sorry."

Oh, dear.

"That's okay," I said back. "I just won't look at it."

"Oh! You're so good! Can I just take you home with me?" she exclaimed and came over and gave me a big hug. "You're just so good. I don't know how you guys do it," she said.

I realized that she felt so awful thinking that the shot she had to give me would add to the pain I was already going through, but to me, it was just part of the process. If it was going to protect me or make me better, just stab me with it. I can take it. It also made me realize that other patients might not react that way. I wonder if others would fight back at her begging her not to come at them with the needle, refusing their treatment. I'm sure it happens. This is why oncology nurses should be considered on par with angels.

I didn't look at the needle, but I believed her that it was big when it seemed like it took forever for the drug to go in. I had to pull out a cheek and she shot me in the upper behind. It really wasn't a big deal at all. Diane is very, very good at giving shots. It just went deep and there is still a dull ache in the injection area today. I zipped back up and was on my way with a slew of follow-up appointments over the next few weeks until my next ICE infusion - March 15.

Until then I'll continue my walking. I have not missed a day yet no matter how shitty I've felt. Sometimes the walks are longer than others. Sometimes they're slower than others. But it's important to me to move every day. I also get outside every day which is getting easier now that it's finally not precipitating. Fresh air does wonders. I have so much paperwork to focus on and administrative work to be done that I am not working, I still get a sense of accomplishment completing all of those tasks. I'm eating pretty well. I can keep most everything down now and my appetite is strong. I'm instructed to be on a "high-calorie, high-protein" diet. This is much different than my usual low-fat, lean-protein regimine. Basically right now I am just eating as much as I can when I am feeling up to it as I know how much my body needs the fuel for this fire inside me. I'm still focused on raw, non-processed foods, though I make the exception for peanut m & m's.

I hope that these improvements continue and that I'm out of the dark when it comes to the nausea. The achiness and weakness that is expected to set in in next week is something that I can deal with - napping is easy. Trying not to vomit is not.

ICE Round 1, Day 1

So I survived the first day of the ICE chemo regimen. We "checked in" to the HH Spa in the fifth floor of the Bliss Wing (appropriate) around 8:30 a.m. yesterday. Nearly 24 hours later, I've had two sacks of chemo drugs, a constant drip of fluid at the rate of half-a-cup every half hour from 11 a.m. yesterday on, three small sacks of another drug to protect my bladder against the chemo effect, lots of snacks that I brought and (gasp) two pretty decent hospital meals.

My room is large and private. I have my own small (very small) TV that gets lots of channels and my own bathroom and sink. However, no shower. This I have to share communally with the rest of the floor. I've asked my mom to bring back flip flops for me as this reminds me of college days and I'm a little skeeved about going in there barefoot.

I have a huge window that runs the length of the far wall through which I was able to watch the chunky snow flakes mixed with soothing rain throughout the day. Signs of healing. It seems there will be mixed winter weather outside the window for my entire stay here, but I actually think that's more tolerable than bright sun would be as in this type of weather I feel like you're supposed to be cooped up and cozy. The sun would only make me ache to be outside soaking it in.

The care has been nothing short of extraordinary. And I'm not just saying that because I work in the marketing department, really. I've been truly impressed by the resources, the attentive care, all the offerings. We've been flooded with helpful pamphlets and printouts with details on each of my drugs. We had a visit from a social worker to talk about finances. A nutritionist is scheduled to stop by at some point. Craig was given a rickety but mildly comfortable cot to stay the night in. There are no limitations on accepting visitors or having sleepovers. I'm signed up

for a "wellness fitness class" Thursday morning with the other patients on the floor. Volunteers will be coming by to give me a therapeutic Reiki session each day, and I was even given a gift certificate for a massage scheduled for 11 a.m. Thursday right here in my room, paid for by a generous grant from an organization called Angie's Spa that has partnered with the Gray Cancer Center. All of these pieces certainly balance out the bad. It's *almost* like our Sandals honeymoon. I can get plastic canisters of oj and cranberry juice or mini cans of gingerale whenever I want it and Hood ice cream cups are available on demand! My bed moves up and down and I can adjust my foot and back positioning with ease.

My nurse, Susan, was with me all day yesterday and she was so thorough and thoughtful. The first step was to access my port yesterday morning. It's all done under a lot more anti-infection protocol here as an inpatient. She wore a mask, gloves, a gown, and I had to turn my head during the insertion. The needle went in beautifully and now it's all covered and taped and nothing that I have to worry about for the rest of the stay. I can even shower with it accessed after they cover it with cling wrap.

The day progressed with a whole lot of waiting, but Craig was with me all day, and we kept busy taking walks around the oncology/palliative care unit (with my IV pole in tow since we are now attached), reading, napping, playing games, etc.

Late morning I took a drug by mouth, Allopurinol, that will lower the amount of uric acid in my blood and protect my kidneys, which can be damaged by one of the chemo drugs. Then at about 5pm came the nausea blockers, also by mouth: Zofran, Emend, and Decadron. It wasn't until 6:30pm that I started the chemo drugs. I'm told this is because the pharmacy mixes all of the outpatient chemo first since the cancer center closes at 5pm then they tackle it for us inpatients. After they mix it the drug bags go through four different check points to verify accuracy, so it's understandable that it took a long time.

Susan was detailed in explaining what the effects of each of the drugs would be. She went over everything about the amounts I was being given, how long each would take, matched it up to my ID number and told me that I should feel no differently than I did before she started dripping them in - and if I did, to let her know right away.

The first was the Etoposide (E). It dripped into my port for one hour. Then came the Ifosfamide (I), which dripped for three hours. With such a late-day start, this meant that I received chemo until after 10:30pm last night. The Ifosfamide is the one that is nearly double the dose a normal adult would receive as part of the pediatric protocol I am under. The Carboplatin (C) won't come into play until Thursday when I will receive all three ICE drugs. All the while that these are dripping, I receive IV fluids as well. It's extremely important that I drink a lot even on top of that to flush out the residual tumor particles that the drugs are smashing through. I get to pee in what's called a hat in the toilet so they can monitor my urine output. They're watching all of my bodily functions very closely.

All yesterday I felt great. My parents arrived to visit for the evening just as the chemo was getting started. They joined Craig and I as we watched Jeopardy, chatted and laughed and ordered in a couple of pizzas from J Restaurant/Bar just across the street - they deliver right to the floor! I was so hungry from the anti-nausea drugs and steroids. I powered my whole penne pasta florentine with chicken hospital meal then 4 pieces of pizza. I guess my appetite isn't affected. However, Dr. Dailey warned me this morning that I might want to tone that down as the stomach upset may still be on the horizon. I did some laps around the unit with my parents and showed them the lounge area where there's a big fish tank, comfy couches, and a pantry with food and drink up for grabs. I'm grateful that I'm able to walk around and eat whatever I want. I really have no restrictions.

It wasn't until about 11 a.m. last night when I started feeling crappy. I all of the sudden had a huge wave of nausea, complete with that hot, scary feeling. Way worse than I ever got with the ABVD chemo. Sweaty all over and head spins and that awful awareness of my throat sphincter. I thought for sure I was going to vomit. I called for the nurse and she was able to administer another anti-nausea drug which Dr. Dailey had ordered in anticipation of this reaction (God bless him) to be given on demand. It worked well and had the dual effect of knocking me out to sleep which helped everything. The night nurse said she tried to wake me up and I wasn't budging, even with a shove, so I guess I slept deeply, at least for a few hours. But then I was woken every three hours to receive Mesna, a drug that also drips into my port for 15 minutes and will protect my bladder from damage that can be caused by the chemo drugs. I got the last one at 6 a.m. and have been up ever since.

Today, same routine. My sister flew in from Cali late, late last night, delayed by the snow, and her and my parents are currently sleeping at my house and taking care of Sammy. I can't wait for them to arrive later this morning. It'll be great to see her! Craig is also taking a half-day of work and will be back to be with me later this afternoon. Even if we're not talking or all doing our own thing it is great to have others around me, so that I don't feel alone, especially when my IV tether puts things out of reach. Even though I can unplug it from the wall, it's not exactly dainty and the spider-like wheels don't make it into tight spaces to reaching things can be difficult. It'll be a good feeling to be detached on Friday. But until then I know that it's feeding me life-saving meds so I'll deal with it.

Another video produced by my talented husband. We found some creative ways to pass the time. I wonder what we'll be doing on day 4, eek: