IVAC Day 3 Update

I have been so moved by the comments left after my last two blogs. I am so touched and so in awe as to how we can all feel so connected by relating to each other through common human experience. When it comes down to it, I think we all just want to feel comfortable, loved and happy and I can't thank you enough for helping me to feel that in an incredible way even during these most difficult of times.

Thank you for letting me into your lives by following along with my journey. I so much enjoy hearing how it relates to your own experiences - cancer or otherwise and cannot tell you how much joy it brings to think that my words could help spark a little inspiration or perspective shift. What an amazing thing language and technology are to be able to connect us around the globe! Forever humbled.

I wanted to just give a quick update to say that I am three days into the inpatient chemotherapy IVAC at Hartford Hospital. I wouldn't say it's "fun," but there haven't been any big complications or reactions. I certainly know that I'm on chemo: bloated, swollen, achey joints, foggy headed, flushed, extremely fatigued, etc. I receive the Cytarabine twice a day, but only for a few days then I receive the Ifosfimide and Etoposide each evening in addition to a drug called Mesna to protect my bladder that I receive throughout the night.

Because Cytarabine can cause neurological issues, I have to do the steps of a drunk driving test before each dose and sign my name and prove I can walk normally. It can also come out in my tear,s so I need to put steroid eye drops in twice a day.

I may be having some of that expected urinary tract inflammation as I was in quite some pain this morning; we're monitoring that closely. I'm also a lot more tired today.

Fevers have calmed down, so we're hoping this is a sign that the drugs may already be working. I have also not had any pain breaking through my Fentanyl patches. These are big changes to when I was admitted on Wednesday absolutely drenched having broken a 103 degree fever on my way in and in severe, severe pain that they had to immediately get me on meds for. These may be two very good signs. But I'm also on Decadron steroids along with the chemo, which could be helping these symptoms as well so don't want to make any assumptions.

I am very comfortable here. I say it every time. The nursing and PCA staff are phenomenal. Plus, they have all treated me many times now and there's a lot of comfort in that. They gave me the "best room on the floor". It's private and large with a nice flat screen TV and a view out to a meditation garden.

The hospital recently changed their food options as well. Items are much healthier and less processed and you are able to order off a select menu vs. the two tired choices they would offer for each meal. I've been really impressed.

This whole thing is a six-day process. As long as I am doing okay then the schedule has me getting discharged on Sunday morning. It will be at home when the side effects will really set in. I'll be getting a shot here of pre-emptive Neulasta to kick up my WBC production as all three of these drugs are going to take a huge hit on my counts. It's expected that I'll be back to the clinic and maybe even hospital next week to get blood products or look into issues. I can expect to feel very weak and crummy, will have to be very careful around germs and all that jazz. I am also going to lose my hair again. I am beyond sad to say goodbye to my soft curls, but it's a small price to pay, I suppose.

I have family and friends to help and will need to rely on them to get me through these next couple of weeks.

When my blood counts do recover - probably at least two weeks, then the plan is to do a second and last IVAC cycle. We would not do more than that - too toxic.

In the meantime, we are working with the transplant coordinator at Fred Hutchinson in Seattle to get things moving on background testing, evaluations, testing of my parents and brother as potential donors so that things are in place should I hit a magic remission and should I decide I want to go that transplant route. Time will tell.

Right now, it's time for Mad Men, lunch and a nap.

For those of you who don't follow me on other social media outlets or through the HuffPo, here is a link to my latest piece: "Cancer Is Not All I Have." If you enjoy it, please share. You can "fan" me here and receive updates anytime I have a blog published there. 

Vials of Love

Below is the text of a piece that I had the honor of sharing last night as part of "Syllable: A Reading Series" at La Paloma Sabanera coffee house in Hartford, Conn. Reading such a personal piece – out loud – to an audience of fellow writers and lovers of literature was both terrifying and comforting. I thoroughly enjoyed listening to the varied works of the nine other writers who put together poems, song lyrics, fiction, and nonfiction – all set to the theme of love. What a wonderfully talented group of people and a fantastic platform for writers. I was so happy to have been given the opportunity to take part. 

"Vials of Love"

I love a woman whose name I don’t remember. In my musings about her, I call her Ona or Aziza or Albutus – names that are strong, gutsy and exotically Eastern European.

I love this nameless woman something fierce. It’s not a love driven from deep in the loins. There is no primal sexual attraction. Though she is old enough to be my mother, the love I hold for her is not of daughterly admiration, nor is it a love of friendship or convenience. It’s an uncomplicated, organic love from one human being to another. It’s a love of deep appreciation and gratitude for the compassion and respect she displayed in a situation where sterility, ache and isolation ruled supreme.

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: