No news is good news

Just a quick update to let you know that I am still feeling pretty decent. I completed my first round of the new chemo drug (Dacogen) last Friday. It'll take a couple of weeks to know if it's working any better than the Vidaza I took for six months. But so far, I haven't noticed any nasty new side effects.

If it weren't for my weekly blood transfusions, twice-daily pill extravaganza, and a few pesky bald spots and other annoying health issues, I might even forget I have leukemia :)

Inspiring -- and funny -- medical story

Here's a fabulous article on Huffington Post by a woman who donated her kidney to a stranger. It's called My Big Fat Vegan Kidney Donation.

Hospital food, chemo update

Some good news and some not-so-great news. First, British hospitals are going to start promoting meat-free meals as a way to reduce carbon emissions. Here's a link to the Guardian story.

On the medical front: My white counts are still way too high so my doctor has switched me to another drug to see if it'll work better. So far, no bad side effects. Hurrah!

If only hot dogs came with warning labels...

Here's a new study showing a link between cured meats and childhood leukemia.

A dose of Vitamin O

Believe it or not, I just got back from a very fun trip to L.A. I felt so good the past two weeks, I thought we should risk a germ-ridden airplane and try to get away. After a harrowing trip out--when you're immune-suppressed, every cough you hear is magnified times 10--we had three fabulous days. Most importantly, I got plenty of Vitamin O(cean)!

Despite a gloomy forecast, the weather was sunny and 60ish, heaven for those of us still dealing with snow and ice. And our hotel room (I splurged) had a stupendous view of the ocean, not to mention a balcony. We had some great outings to the Getty Villa, Point Dome, Crystal Cove State Park, and the Griffith Observatory, but frankly, the most wonderful thing was just listening to the pounding waves and watching the sunrise from our hotel room. Here's a link to more pics.

On the medical side of things: Today's clinic visit brought mixed news. My neutrophils, reds, and platelets are all pretty damned good (for me), but my doctor is worried about my elevated white blood count. It could be a sign of the leukemia progressing. If it doesn't go back down by Monday, we're going to switch to a new chemo drug when I begin Round 8. I find it hard to believe the leukemia is getting worse as I have felt better the past two weeks than I have since I relapsed in July. The next time I hear bad news, I hope to just close my eyes and hear the waves...

Feeling good this week

As many of you know, I've had a tough time since July. (In fact, I never imagined I would be around to celebrate Bush being booted out of office.) But what's amazing this week--besides getting to experience some of the excitement of the Inauguration--is that I have actually felt pretty damned good much of the time. I'm still living on frequent transfusions, but I'm much less tired and haven't had a high fever in more than a week. It could be the Prednisone--which I've had to increase--but as I know from dealing with this disease, it could be anything. I have no idea if this will last, but we're knocking on every piece of available wood! Here's a photo from Sunday; we did an hour walk along the river.

A great night!

D.C. is unbelievably electric right now and I am SO grateful that I feel good enough to enjoy some of the excitement. Most things are way too crowded for an immune-suppressed germaphobe like me but tonight I got to attend the "Saging of the White House" with comic Kate Clinton. It was fabulous. The idea was to use the old Native American tradition of burning sage incense to spiritually cleanse something. In this case, Clinton, a rabbi, a shaman, and several hundred of us gathered to sage the White House of the evil doings of the past eight years. (Since there was too much security at the White House, the saging was held in Dupont Circle.) I don't have a pic of the saging, but here's a snap of a giant blow-up dummy representing Bush. Folks were having a great time throwing shoes at it!

P.S. For a good photo of the Bush effigy, click here.

Here's to the animals who keep us going...

Cats and dogs are such wonderful companions, especially to those of us dealing with serious illness. Unfortunately, some transplant patients are told to give up their pets because of the germs.

I was lucky because Fred Hutch said I could keep my kitties as their research showed people heal better with their loved ones around. Some brave transplant patients ignore their doctors' advice--believing that giving up their animals would actually be harmful to their health. Here's an excellent article on the topic in USA Today. A couple of months old, but well worth the read.

Up above is Cinders, a sweet girl who lasted through my transplant, but who succumbed to her own illness and old age--22! (My dear friend Ellen gave her a home while I underwent the transplant.) And here's a pic of Fatty who is still with me, every step of the way. Especially if there are plenty of rest breaks.

Channeling the Big Lebowski

Don't tell my physical therapist as she'd be worried about my lymphedema acting up, but we went bowling today! It's amazing how something as ordinary as bowling could be so much fun. (Given how many hours I spent in the clinic last week, even going to the library starts to feel like an adventure.) Here's proof of our crazy outing to the suburbs of Virginia in search of an old-fashioned bowling alley that doesn't have a dress code or obnoxious big screen TVs. I hit a strike on my first turn and although it was downhill from there, we had a swell time.

Juicier juice

Fresh juice, anyone? A couple of weeks ago, I bought a fancy juicer as I've read that fresh juice is especially good for people with leukemia or MDS.

If you've contemplated buying a juicer or if you have one, you know there are all different kinds. We got the Omega, one of the extractor kinds as they are supposedly better for people who have a hard time absorbing nutrients. (They separate out the pulp.) John's been making his way through Gary Null's Joy of Juicing. His yummy version of Gary's Cucumber, Lime, and Kiwi Divine includes three cukes, one lime, three kiwis, and a tiny bit of agave nectar. Next on the menu? Trying to get leafy greens to taste as good.

Old friends

Several old friends I haven't communicated in years have recently gotten in touch. It's ironic because I've been spending a lot of time going through old photos and cards and wondering why I lost touch with these and other folks.

I know it's hard to get to my age without any regrets but my advice is to try and live your life so you stay in touch with those you care about. I know it's meant a lot to me to hear from these people. They didn't know I was sick but somehow the universe connected us up again. (Can an agnostic say that?) To the left is Elaine Bystrom, an old friend with whom I spent many happy days hiking in the Pacific NW many moons ago.

Medical update: One more day on the chemo and then I'll get a breather from the infusions. Can't do away with the transfusions but it'll be nice to reduce my time at the clinic and get a break from the Vidaza.

Not much news today!

Round Six of Chemo began on Monday. Things are pretty much the same as with previous treatments--which means I don't really have any news to share. Just continuing to keep my fingers crossed.

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!