Wednesday, December 31, 2008

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.

Monday, December 29, 2008

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 :)

Sunday, December 28, 2008

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.

Thursday, December 25, 2008

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.

Wednesday, December 17, 2008

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.

Tuesday, December 16, 2008

Sunday, December 14, 2008

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!

Tuesday, December 9, 2008

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.

Friday, December 5, 2008

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!

Thursday, December 4, 2008

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 :)