Patients aren't always so patient

If you've ever spent hours impatiently waiting for a medical appt., you know how funny the word "patient" really is.

The clinic was more jammed than usual today since the docs were all away last week at a big hematology conference. (Unfortunately, there were no fabulous new cures for leukemia unveiled at the conference.)

I did finally talk with my doctor and he wants to switch me to Dacogen if the round of Vidaza I'm doing this week doesn't make more of a difference. That round would come just after New Year's. Meanwhile, I keep hoping the Vidaza will kick into high gear.

Night lights

After putting in a full day at the clinic getting transfused, it was lovely to spend a couple of hours checking out the national Christmas tree--and to have the energy to do so!

Kidding around

John and I had a great Thanksgiving with my sister Dina and her son Sam. On the last day of their visit, we went ice-skating at the Sculpture Garden on the National Mall. I even did one lap around the rink. (Fortunately, there are no pics of that athletic attempt!)

Regarding my health: Still not sure if the Vidaza is working. Seems to help with my neutrophils and platelets, but my bone marrow is just unable to produce any red cells. Unfortunately, I'm needing more frequent transfusions. Thank god for the distraction of great novels :)

Must-see movie: Young@Heart

If you're in the market for some inspiration (especially if you're challenged by age or illness), check out the amazing documentary Young@Heart. It's about a senior cover band that tours the world performing the Rolling Stones, the Talking Heads, and all kinds of other music you don't normally associate with people over 75. They're awesome! (You can rent the film from Netflix or purchase some of their past shows at www.youngatheartchorus.com.)

Neutrophil delight

Unless you're a lab tech or hematologist, or have a blood disorder, chances are you don't know how many neutrophils you have. (Those are the white blood cells that miraculously fight infection.) As someone who's often dangerously short of them (it's called being "neutropenic"), I decide whether or not to go to the movies, wear a mask to the grocery store, or get my teeth cleaned depending on how many of these little guys are in my blood on any given day.

Today, I was thrilled to find out that my neutrophils have almost doubled since last Friday which means that even though I'm still immune-suppressed, I don't have to be quite so worried about going out and about. PLUS, my red blood cells are holding firm which means I can probably make it through the holiday without a transfusion. Happy Tofurky, everyone!

Here's to oncology nurses!

I just came from the clinic, having had another transfusion which I hope will carry me through the holiday. Today, as always, I was so grateful for the wonderful nurses at Medical Faculty Associates. Like so many oncology nurses who have treated me over the years--both in D.C. and in Seattle--this group is unfailingly competent, kind, compassionate, and hard-working. There may be a multitude of problems in the healthcare system, but oncology nurses aren't one of them. This picture is of Katie. Not shown, but just as appreciated, are Kirstin, Theresa, Paula, and Kathy.

Another reason not to eat meat

Although there's already abundant evidence that meat production is horrifyingly cruel, Tuesday's New York Times had yet another article about terrible abuses at the slaughterhouse. If you don't stop eating meat for your health or the environment, consider the horrors that are routine in meat production. And even if your Thanksgiving turkey is free-range and organic, do you know how it was treated at the end of its life?

Another challenge for Obama--healthcare crisis

Excellent editorial in today's NYT about how poorly the U.S. medical system compares to those of other countries. The piece talks about medical errors, test duplication, lack of after-hours care, and how prohibitive costs keep some chronically ill folks from getting care.

Who needs pumpkin pie?

I've been dealing with a lot of fatigue lately--don't know if it's the chemo or the leukemia. But thanks to a couple of pumpkins on our porch, the squirrels have been keeping me amused.

A bit more of fall

The rains are hitting D.C. pretty bad right now and I'm afraid we'll lose all our gorgeous gold and red leaves. So here's a pic from a walk John and I took along the Potomac last Sunday. A gorgeous day--possibly our last for a while.

Happy Birthday to the world's best sister!

"Oh, she's got the fever...Fever all through the night..."

Remember Bruce Springsteen's song The Fever? It's been floating through my head all day. Not a surprise given that my recent Vidaza injections seem to bring on evening fevers. Fortunately, John and I have been through this fever routine so many times that we're getting a better handle on when we can manage it at home. As Leonard Cohen has so beautifully sung, Hallelujah! Staying out of the hospital is Goal Number One.

Here's a good one: Not enough fat!

Just a quick note to let you all know that I've restarted round 4 of Vidaza. (I'm taking the Vidaza in injection form now rather than as an infusion since my arm is still recovering from the slipped IV last week.) My nurse keeps commenting that I don't have enough stomach fat to protect me from the needle sticks. I find that amusing and gratifying at the same time. Although I know I'm skinny because of my disease, I can't help but enjoy it on a certain level. American women all grow up desperate to be thin. Too bad I couldn't get here another way!

My successful escape

It took my sister's lawyerly diplomacy and the kindness of a third-year medical student to bust me out of the hospital last night. The different teams taking care of me didn't agree on a treatment plan and a mix-up in orders to the radiology department resulted in my staying an unnecessary extra night. (No wonder healthcare costs are out of control.) While I've had some excellent hospital care over the years for which I am eternally grateful, I've also seen some serious flaws with the system. It's frighteningly clear that one needs to double-check things whenever possible.

How I spent election night

Just so you don't get the idea that I spend all my time hiking, kayaking, and eating out, I'm blogging tonight from George Washington University Hospital.

I checked in yesterday afternoon with a fever following a mishap with my chemo treatment on Monday. Fortunately, I think I'm OK again and should be able to go home Thursday or Friday.

The good news is that I got to vote--thanks to something called an emergency absentee ballot. And although we missed a lot of the election celebration, we could hear folks cheering in the streets outside our room.

More on breast cancer

Not that we really need any more evidence, but here's more confirmation that keeping one's weight down and exercising can help fight breast cancer. There's a new study on weight and another on exercise.

(Of course, if you know me, you probably already know that a vegetarian or vegan diet can help with the weight!)

Seattle days

I had a great visit with my favorite Fred Hutch doctor yesterday. He validated the treatment course my D.C. doctor and I had settled on a couple of months ago and gave me some additional helpful information in case the drug I'm currently taking doesn't work. I'm really happy I met with him.

He also recommended a transfusion so I'll spend this morning in the Seattle Cancer Care Alliance infusion room--another procedure for old time's sake. (Halloween, a perfect time for a transfusion!)

Fortunately, the extreme fatigue (caused by a low hematocrit) didn't begin on Wednesday until after I was able to enjoy a fabulous hike with two friends, Julie Friedman and her beau Jeff Stone (two of those Seattle angels who visited me in D.C. this summer). We spent the day in one of my favorite hiking spots, Umtanum Canyon near Yakima in Eastern Washington.

This area is famous for its big-horned sheep which we were very lucky to spot. The gorgeous yellow cottonwood leaves were flitting in the breeze and we saw plenty of evidence of beavers. Unfortunately, we ran into two Cheney-look-a-like hunters--with dogs and rifles--right on this well-trodden trail!

One more walk on the itinerary, several more visits with friends (and hopefully, a few more gourmet vegan dinners!) and then home to D.C. on Sunday.

Having a great time...wish you were here

Traveling to Seattle with my low white cell count was scary but I made it in one piece. So far, I've had two great hikes and two yummy vegan dinners. (Seattle is famous for both.)

Here's a pic of three of my Seattle angels (l. to r., Jennifer, Rita, and Laurel) overlooking Deception Pass about an hour and a half north of Seattle. We saw seals, quail and cormorants, mountaintops, tons of sun, and miles of views.

On a side note: Seattle continues to grow, the traffic is atrocious -- and sadly, seven killer whales are presumed dead this week from lack of salmon. Still, the area is beautiful...

Headed to Seattle

I've been trying to get to Seattle to visit friends and consult with a doctor at Fred Hutch for the past few weeks. It looks like I'll actually be leaving in the morning!

This day cancels out the bad ones

During my bad weeks, I begin to wonder if fighting so hard against the cancer is worth it, but a day like today overrides all that negativity.

John and I had an absolutely gorgeous kayak on the Pocomoke River today in southeastern Maryland. We had the wind at our backs, the tide in our favor, and the eventual cooperation of a reticent sun.

The Pocomoke is more like southern rivers, with bald cypress trees and dark tannin-filled water. We were literally the only people on our section of the river for three hours. Just us and the birds and the gorgeous fall colors. No mosquitos and even more important, no hunters! Drifting downstream in conditions like these--pretty perfect.

Lesson #587: I had been sick on Friday night and afraid my hemoglobin was getting too low, but we took the chance and drove out to the Eastern Shore anyway. As some folks in D.C. say, "have a blessed day." And we did.

P.S. Here's a picture of the Pocomoke Canoe Company in Snow Hill, a fabulous canoe/kayak outfitter that portaged us back up the river. Snow Hill has a bit of a charm, as well as a neat little restaurant -- the Palette -- with some vegetarian options.

Quick update

The third round of Vidaza went OK. I always feel under the weather after a week of treatments, but am starting to feel "normal" again.

I was supposed to go to Seattle this week to visit friends and see a doc at Fred Hutch, the clinic where I had my transplant, but have had to postpone the trip for a week because my white count is really low and it's too risky to travel. (For those blissfully unaware of the importance of white blood cells, they protect us against infection.)

Meanwhile, the weather in D.C. is absolutely glorious.