Friday, January 30, 2009
If only hot dogs came with warning labels...
Here's a new study showing a link between cured meats and childhood leukemia.
Thursday, January 29, 2009
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...
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...
Monday, January 19, 2009
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.
P.S. For a good photo of the Bush effigy, click here.
Sunday, January 18, 2009
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.
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.
Wednesday, January 14, 2009
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.
Tuesday, January 13, 2009
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.
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.
Thursday, January 8, 2009
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.
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.
Tuesday, January 6, 2009
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.
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