Pajama day

(Pamela S., I blame you for this entry. You said you wanted more 'ramblings'.)

It's about 5:30 pm, and I'm still in my pajamas. There was nothing required of me today, and I willingly complied. For the first few nights immediately after chemo, I don't sleep so well because I tend to catnap my way through the day, either from just the sheer fatigue or a pill for nausea, or both. And then I want to catnap my way through the next day because I didn't sleep well the night before. It usually straightens itself out by the weekend.

It's hard not to feel guilty telling the boys good bye in the morning while I'm in my robe and slippers, and it's even worse when they come home and find me in the same state. I know they understand, but I still feel bad.

I've built a nest around the reclining chair in the man cave (family room -- or the old playroom, as some of you might remember). At my hands are my iPad (of course), my liter-sized Camelbak water bottle (gotta flush out those toxins), my cell phone and the house phone, television controls if Paul isn't here, my favorite black pashmina wrap, a blanket, various magazines and catalogues, copies of medical reports, greeting cards, hand lotion, reading glasses, and lip balm. I can pretty much survive the day right here.

My crowning achievement today was opening a shipping box containing a replacement pair of my favorite shoes. The box had been unopened since before Christmas. I almost kept the tattered original pair for...I don't know...backup, but saner heads prevailed. My visiting dear friend Andrea strongly advocated pitching them in a manner only a close friend can. I complied.

I spent the remainder of my day surfing the net, catnapping, talking to an old neighbor on the phone, and watching a movie about Hemingway. I forget the name, but it starred Clive Owen and Nicole Kidman.

It's close to 6:30 now, and Paul just arrived home, after picking up six different prescriptions for me from the Walgreens. Let's see what he comes up with for dinner.

Typical chemo day

The alarm went off at 6 am, plenty of time to pad downstairs in my bathrobe and slippers for a leisurely cup of coffee. Paul and I plop down in front of the tv while he catches up on SportsCenter and I check my blog. For an hour, we have the house to ourselves before the boys wake up and begin their morning routine.

At 7:30, Paul and I pull out of the garage, feeling a little guilty about leaving the boys to get ready for the bus on their own. They're 12 now, I remind myself. They can do this. We have trustworthy neighbors on all sides of us who would jump in at a moment's notice, and the boys are proud of the freedom and trust we give them. Still, they're my babies, and I like being able to look out my dining room window and watch them climb on the big yellow school bus.

My appointment for chemo isn't until 9:00, but the unpredictability of Atlanta traffic necessitates leaving lots of extra time for delays, detours, and general driver silliness. We pull in the parking garage at St. Joseph's a few minutes before 9:00, having traveled a grand total of only 18 miles from our house. I get to the chemo suite with plenty of time to claim my favorite chair.

Today, my nurse Miss Alice, a 63 year-old veteran who likes to call us "her girls", gives me a big hug and asks about my Christmas. She liked hers, but she's glad it's over. Miss Alice, quite uncharacteristically, has trouble accessing my port and has to stick me twice. I easily forgive her because I know the drugs she's about to infuse into me will make me not care.

I've got my teal bracelet, my teal socks with the nonskid surface -- good for the multitude of treks to the bathroom over the course of the day, thanks saline -- and my teal and peach prayer beads on. Later, I'll hook up my iPhone and listen to my guided imagery meditations. Right now Paul and I are just enjoying our time together, even if he's on his laptop and I'm on my iPad. It's nice to be comfortable.


It's about 10:30 now, and I'm still getting my pre-meds. Two different ones for nausea, a steroid, Pepsid, and ten times the over-the-counter dose of Benedryl, plus a huge bag of saline. It will be interesting to see how my writing holds up once these all sink in.

My eyesight is starting to get a little fuzzy now, and I'm feeling rather mellow. Just a bit more Benedryl, then the Taxol begins. 


OK,Taxol, it's time to get to work. Search. Kill. Destroy. Your compatriot, Carbo, will be along in a few hours to relieve you. Now it's time to stumble to the bathroom - my infusion machine is portable so it goes everywhere with me. The drowsies are here. 


Sometime around noon, Paul did my bidding and went to Alon's, a fabulous market/bakery that has a store nearby. Their original in-town location is in the Virginia-Highlands section of Atlanta, where I used to live before I married and moved to the 'burbs. They started out as a little bakery making bread and pastries. Then they added sandwiches, and it took off from there. Now, they're a gourmet food shop, with wines and cheeses from around the world, ready made gourmet delicacies, and still, wonderful sandwiches. Paul bought my favorite, the Tuscany...a heavenly concoction of roasted eggplant (aubergine for you Brits and French), sundried tomatoes, arugula, and goat cheese. I just finished mine and writing about it now makes me crave another one. OK, maybe that's the steroids talking. 

I tried chatting on Facebook with a friend while Paul was gone, but that was a disaster. I kept falling asleep while I waited for her to reply. Epic fail. 

Also, I tried taking a picture of myself in my infusion chair, but I looked so stoned I decided it best not to share it on the Internet. You never know when I might run for public office.


We're down to the last few minutes now, and one of the nursing assistants handed me my schedule for the next cycle. When I reviewed it, it was nonsense to me. I asked Miss Alice to come over, except I called her Miss Mary by mistake, and explained that something was wrong. The conversation went something like this:

Me: I usually have a Day 10 blood draw, where is that?
Her: It's right here, sweetheart. See?
Me: I also always have a draw on the Friday before chemo.
Her: (oh-so-kind and oh-so-patient) Yes, honey, it's there. And then your next chemo is on the 29th.

Suddenly, I realized my schedule looked exactly like the schedules for my three previous treatment cycles. Exactly. My brain was just trying to read it in ancient Arameic at first. Another day, I'll write about the phenomenon of chemo brain. Hopefully, cancer cells don't like stupid.


An uneventful drive home, and here I am back in my La-Z-Boy, trying to have a coherent conversation with the boys about their days at school. I need to give up and go to bed.

And finally some encouragement

Just got off the phone with my oncologist...yes, it's after 10 pm. The PET scan shows the lung nodules have stabilized, meaning they haven't gotten any larger...but they haven't gotten any smaller either. And, there's no new cancer. I'll continue with the same chemo drugs, carbo/taxol, for the remaining three cycles.

I know that it's good the cancer seems to be responding, but I'll admit, I was hoping for more dramatic results. I don't want stable cancer. I want NO cancer.

Thanks for all of you rallying tonight. Really gave me a boost.

So, tomorrow I'll behave myself and direct that chemo to begin destroying those nodules.

And wait some more

It's after 7:00 pm here in Atlanta, and I still know nothing of my PET scan nor what chemo drugs I'll have tomorrow. It's possible that my oncologist will still call, but I'm not holding my breath. To say that I'm frustrated and angry is an understatement.

I plan to show up for chemo at 9:00 am, as usual, but they will not stick one needle in me until I speak to my oncologist personally. I'll hold the entire chemo suite hostage. I'll start a demonstration. I'll go on hunger strike. I'll unionize the patients. I'm going Norma Rae on their ass.

And so we wait

When I called my oncologist's office this morning to ask about my PET scan results, I found out he's still on vacation until Monday. No news until then.

Pivotal PET scan

They have us packed in like sardines at the radiology imaging waiting room. This will be my third PET scan here and the most nerve wracking. I went into the previous two with great naïveté. This time, the stakes are high.

I'm halfway through the carbo/taxol chemo, so it's time to see if it's working to shrink or get rid of the three small nodules of metastasized endometrial cancer in my lungs. If there are improvements, we'll continue the course with the remaining three sessions of carbo/taxol. If not, then it's back to ground zero and time to try something else.

What's worse is I know the technician will know exactly what's going on as soon as the scan is over, but she can't tell me. I'll have to wait until at least tomorrow to give my doctor time to sift through the papers on his desk to my results. I think I'll take an extra dose of Xanax tonight before bed.

Of course it's no fun that I haven't had anything to eat since midnight, I'm so tired it's all I could do not to fall asleep during the drive over, and I forgot the form with my oncologist's instructions, as well as my insurance card. And, I'll be radioactive until 6:00pm tonight from the contrast solution they inject in me one hour before the scan.

I just want a nap.

Resolved...

“Life is without meaning. You bring the meaning to it. The meaning of life is whatever you ascribe it to be. Being alive is the meaning."    - Joseph Campbell

My resolution for 2013 is simple...to wake up each day aware that I have yet another opportunity to define my life.

On darker days, my life is about acceptance. Those days are neither good nor bad. They just are.

On bright days, my life is about inspiration, reaching out to be a part of something bigger than myself.

And some days, I will simply revel in the ordinary.