Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Low fever

It's been a week of low fever, constipation, diarrhea and general feeling poorly. I did too much on Tuesday after chemo Monday, which didn't help at all. I cancelled everything for today and barely had the energy to take Tylenol, eat and shower.

I'm off to the sofa to recline for the rest of the afternoon after spending most of the day in bed.

Coming up for air

This past week I've moved from the sofa to the bed with that same low fever and lack of energy. Even taking the dextroamphetamine three days in a row didn't help much. I'd take it at noon, feel better an hour later, try to run my errand, appointment etc., and still find it tough to put one foot in front of the other. I even gave my car a fender-bender in that terrible  Trader Joe's garage on Capital Hill. Then the uppers would kick in and I'd be awake until 2 AM.

Friday afternoon I wondered if I needed a blood transfusion, so we ran to see The Amazing & Wonderful Nurse Jacque for a blood draw. No transfusion needed, just feeling icky, but thanks to our friend T and the interconnectedness of Facebook, we ate a delicious salmon dinner last night. I even had a glass of rose!

Today I actually woke up feeing well-ish. Due to the uppers, I hadn't fallen asleep until two o'clock in the morning, so I stayed in bed until 11 AM, ate something and took my morning meds, sat outside in my pajamas and a blanket in the sun for an hour, then went back to bed until 3 PM. I wish I'd taken a selfie to post. Imagine me wrapped to my chin in a maroon blanket that's covered with dog hair.

D stopped by unexpectedly to visit and we chatted over tea for an hour. That's given me some extra oomph to make pizza for dinner before the TJ pizza dough died. Rik and I will enjoy pizza with mushrooms for dinner, another glass of rose, and have better expectations for Sunday.

Costco anyone?

Missing my dad

Today is my dad's seventh yahrzeit, the anniversary of his death.

He died a week before turning 80, with his mind intact but his body failing in so many ways. Dad said he wasn't dying but I didn't believe him. He certainly didn't want to live the way he was living, and so he did the only thing he could - he stopped eating. He wouldn't talk about any of it with anyone. Not his wife of so many years, not his daughters, and we think not even his therapists (or at least they never told us).

What did I learn? That it doesn't help to not talk about your personal issues, because we can't help if we don't know what's really going on.

And that no one should die alone and uncomforted in the middle of the night, because they didn't believe in their own mortality.

My Dad and Mom circa 1949.
Photo might have been taken at their engagement party.

No it's not pneumonia

But the closest thing possible. I've just well enough to stay home and not be admitted to the hospital, where of course I could pick up all sorts of bugs no matter how clean everything they keep it.

So I continue to honk, cough, and blow incredible amounts of snot out of my nose. I'm on the second antibiotic, this one especially for pneumonia, and I do feel some better already.

Thank God for A, H, and R, who have been walking the dogs while Rik was away. I am taking two of  them out for lunch now and the third has a tbd date. And thanks to all those who gave me rides, brought food, and came to visit during these past few weeks of chemo recovery and what turned out to be not quite pneumonia. You know who you are and I bow at your feet. And will always, as science fiction author Robert A Heinlein originally taught us, pay it forward.

Onward to lunch - or in my case, brunch. And COFFEE!