My letter in the Baltimore Sun today

I have a letter to the editor in the Baltimore Sun today about hospital food. (One of my favorite subjects to crab about!) Seriously, if you've spent time in a hospital bed, you probably know what I'm talking about. I always think it's funny when I see the insurance bills for my hospital stays noting the enormous amounts they charge just for "room and board." Maybe I next time I should ask for a discount on the "board" since my family almost always brings me yummy vegetarian meals from home or a restaurant.

Change of plans

I saw my doc today and he thinks we should stick with the same chemo -- at least for now. I was leaning in the same direction so I'm glad we agreed. Still hard to tell how much the Vidaza is working but he thinks it's worth trying another couple of cycles. Next Monday, I'll begin round 6. Still hoping for a knockout :)

Holiday lights

It took almost an hour to get into this place -- Brookside Gardens in Wheaton, Maryland -- but it was worth it. Hard to capture without a tripod, but the thousands of lights manipulated into fanciful creatures, flowers, and various other designs were amazingly beautiful. Plus, this is a light show you can walk through, not just drive. I'm glad I was able to go--the fevers seem to hit at least once a day which makes it hard to get out.

Happy Solstice, Chanukah, and Christmas!

I hope everyone is having a great holiday. My sister and her family are here and we're celebrating as many holidays as possible. Here's my nephew Sam lighting the Chanukah menorah tonight.

Another Seattle angel flew in for a visit

If you've been reading this blog since the beginning, you know I call my out-of-town visitors angels. (I had a whole house full of Seattle angels here this August and a few others from North Carolina and San Francisco.) Well, another Seattle angel -- my dear friend Ellen Leach -- visited this week. Ellen deserves an award for keeping me company at the clinic longer than just about anyone other than my sister or husband. She also quickly learned to navigate the scary traffic circles near the clinic. Thank you, Ellen!

And here's a new picture of my sweet boy, Fatty (or as some of my friends prefer to call him, Slim.) As you can see, he's having a relaxing holiday season.

My letter in the WA Post today

I had a letter in the WA Post today talking about why I'm opposed to animal research, even though I take so many animal-tested drugs and have undergone so many animal-tested procedures. Here's a link to it. Mine is the second letter on the page.

If you read the letter, you may notice that I've just signed up for hospice. Before you freak out, let me explain. Hospice is not like it used to be. Nowadays--at least with my insurance--one can pursue treatment while on hospice. One can be on hospice for a long time, or get on and off it. In fact, there are quite a few benefits for me to get set up on hospice, including in-house nurse visits, a 24-hour nurse help line, free drug delivery, and various other benefits to make my life easier.

I know that hospice is a loaded term and it might sound to some of you like I've given up, but I haven't! Trust me. I'm still hoping that the chemo will work.

More good news about fruits/veggies & breast cancer

See the newest study.

Out of town, sort of

I finally got out of the house--and went somewhere other than the clinic. After a week of chemo infusions and blood transfusions, I thought I deserved a yummy vegan brunch. John drove me up to Great Sage in Clarksville, MD, a no-man's land between Baltimore and D.C. It's the best vegetarian restaurant in this area. I had the Three Onion, Three Mushroom Tofu Quiche with roasted potatoes and soy sausage. Yum. I should have taken a pic!

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!