Today was a great day. I suppose everyone deserves one really great day every four years.
First of all, it was BEAUTIFUL out today. It got up to around 55 degrees. The way the winter has been, it felt like 80 degrees. We actually got to see the sun.
This morning, we celebrated Leap Day by going to Arts and Crafts at my friend Brooke's house, where all the kids made some really hilarious buggy-eyed frog hats. (You know, because frogs leap.) It was one of the cutest crafts we've ever made. Brooke even made frog-themed snacks, such as round, green Rice Krispy treats with Junior Mint eyes. It was very festive morning.
When we got home, there was a big package waiting for me on the doorstep. I had no idea what it was. It was from a woman named Kathy from New Jersey, who I have never met in real life -- only through this blog. Inside were ... TWELVE TEN-OUNCE PACKAGES OF BLACK JELLYBEANS. That's right. How great is that? A lifetime supply of black jellybeans just showed up on my doorstep without warning. Actually, at the rate I go through them, it could be a one-week supply of black jellybeans, but still. That is an awful lot of jellybeans. Thank you, Kathy!
I thought the package of jellybeans was going to be the big highlight of my day. Close, but ... a few hours later, I had my appointment at the Cancer Center. I'd mentioned a couple of weeks ago that my new Dex schedule was going well, but I expected things to start going bad at any time. I was right. Shortly after I posted that, the Dex started to catch up with me again. I've been in complete Dex misery for about a week and a half. It's been a constant, awful roller coaster. On my days off, I feel like I've just been run over by a car. I'm completely exhausted and my brain doesn't work. On my days on, I feel like I want to get in a car and run over somebody else -- that is, if my heart doesn't explode and I don't jump out of my skin first. It got so bad, that last Monday I tried calling Dr. H at the Mayo Clinic to see what I could do about it, only to discover that the Kansas City Cancer Center hasn't been faxing her any of my test results, so she couldn't comment on my case. This was not the news that I wanted, especially while I was all Dexed up. I decided to tough it out until today, and then talk everything over with Dr. GPO.
First of all, Dr. GPO was horrified that no results have been going to Mayo, and he promised to fax off every number immediately and call Dr. H himself.
Next ... and this is probably the greatest news of my WHOLE ENTIRE LIFE:
I
GET
TO
QUIT
THE
DEX!!!!!!!!!!!
Dr. GPO told me exactly what I had been thinking: It's true that the cancer isn't gone, but I'm so stable and so healthy overall, that there really is no reason for me to feel so miserable all the time. I will still be taking the Revlimid, so we'll see how that works by itself. If my numbers suddenly take a turn for the worse (and Dr. GPO doesn't think they will), then I'll probably have to get back on the Dex again, but trying out Revlimid alone for two or three months isn't going to kill me. At the very least, I'll be giving my body a little break from the Dex horror.
I don't think I've ever been so happy in my entire life.
All of my other numbers were good. My hemoglobin is hanging in there at 12.1, and everything on my blood count is in the normal range. Dr. GPO went over all of my results from last month; there's one thing he always tests for called Beta-2 Microglobulin. Most myeloma experts say that your Beta-2 level is one of your biggest prognosis indicators. The lower your level, the better your prognosis. Mine has always been within in the normal range, but now it's down to 1.2 (still normal, but very low normal). You want it below 3.0 to still have a "good prognosis". Dr. GPO says mine is the lowest Beta-2 level he's ever seen in a myeloma patient, so he was pretty excited. Me too.
After I danced out of the Cancer Center, I stopped at Hy-Vee to pick up a meal for our neighbor who just had surgery. Whenever I take a meal to someone who is sick or had a baby or whatever, I never actually cook anything: I just pick up a rotisserie chicken and sides at Hy-Vee. I think I'm starting to get a reputation around here as the Hy-Vee Chicken Girl. That's a whole separate blog entry, though. Back to my story: On my way out, I accidentally dropped my big carton of deli green beans all over the ground, and a complete stranger rushed over to help me clean it up. Then the nice deli lady said I could have some new green beans for free.
Let's review: Frog hats, black jellybeans, no more dex, kindly green-bean people.
Greatest day ever.
Friday, February 29, 2008
Thursday, February 28, 2008
What's new?
Very little is new in the world of Cancer Banter, and that's a good thing. Actually, that's a great thing.
My emotional and physical energy are high. I'm taking longer stretches between blood count checks (and blog posts), and I'm getting more comfortable with the lapses in time. It's been a gradual letting go process from daily, to three times a week, to weekly, to bi-weekly blood tests. Soon, I'll be going in monthly and then, eventually, once a quarter for visits.
At first, I became anxious and edgy when the time between blood checks surpassed a week. I operated from fear. "No, better not do that biopsy," I told my dermatologist. "My platelets might be too low." "No, better not shave my legs," I told myself. "A nick could be fatal (or at least messy." I was addicted to the constant feedback and soothing reassurance of my counts. I lived life by the numbers.
As I'm being weened away from the blood draws, I'm also pulling away from visits with my doctor, staff and patients. I especially miss the upbeat perspective of other cancer patients. It's embarrassing to whine about my skinny butt and deformed skin after meeting an optimistic 30-year-old man who's had ten brain surgeries in ten months. Or an energetic 19-year-old boy about to undergo his second donor stem cell transplant. Or a patient middle-aged woman whose bone marrow doesn't make enough white blood cells or platelets. (She's been a blood patient at CoH for a year and a half, but her doctors are still stumped by her under-production.) On the other hand, if I chose to complain about my concave ass(ets), I'm sure I could find someone who would understand.
But, as I've predicted, my "other" life is expanding while my patient life is contracting. I just returned from another trip to San Francisco to visit my friend Bob. Since I'm "off leash," I got to luxuriate at the Japanese baths, Kabuki Springs and Spa. George and I will be visiting his family in Seattle next week, and later in the month I'll be flying back to spend Easter with my family in West Virginia. We may be hunting for Easter eggs in the snow with my great nephew Will.
I'll be reading one of my "works in progress" at Gorgeous Stories, "brave, moving and often hilarious new work" from Terrie Silverman's workshops, on Friday, March 14, at 7:30 pm at the Church of the Angels in Pasadena. (Call or email me for more details.) I call my piece "Strangers in the Night," and, no, it's not about cancer.
I'm working on revamping my Open Mouth, Insert Fork blog site and will start posting on that site when the rehab is complete.
I'll be seeing many of my local gal pals this Saturday at my first annual Take Comfort! party, a celebration of the food, beverages, music and friendships that give us comfort. I'm hoping that, as a side benefit, the high-fat comfort foods of chips and dips, mac 'n' cheese, meatloaf, cole slaw and plenty of chocolate-based desserts will add some "junk in the trunk."
Not much is new in cancer world, but a lot is going on in my new, non-patient world. And that's just the way I like it.
My emotional and physical energy are high. I'm taking longer stretches between blood count checks (and blog posts), and I'm getting more comfortable with the lapses in time. It's been a gradual letting go process from daily, to three times a week, to weekly, to bi-weekly blood tests. Soon, I'll be going in monthly and then, eventually, once a quarter for visits.
At first, I became anxious and edgy when the time between blood checks surpassed a week. I operated from fear. "No, better not do that biopsy," I told my dermatologist. "My platelets might be too low." "No, better not shave my legs," I told myself. "A nick could be fatal (or at least messy." I was addicted to the constant feedback and soothing reassurance of my counts. I lived life by the numbers.
As I'm being weened away from the blood draws, I'm also pulling away from visits with my doctor, staff and patients. I especially miss the upbeat perspective of other cancer patients. It's embarrassing to whine about my skinny butt and deformed skin after meeting an optimistic 30-year-old man who's had ten brain surgeries in ten months. Or an energetic 19-year-old boy about to undergo his second donor stem cell transplant. Or a patient middle-aged woman whose bone marrow doesn't make enough white blood cells or platelets. (She's been a blood patient at CoH for a year and a half, but her doctors are still stumped by her under-production.) On the other hand, if I chose to complain about my concave ass(ets), I'm sure I could find someone who would understand.
But, as I've predicted, my "other" life is expanding while my patient life is contracting. I just returned from another trip to San Francisco to visit my friend Bob. Since I'm "off leash," I got to luxuriate at the Japanese baths, Kabuki Springs and Spa. George and I will be visiting his family in Seattle next week, and later in the month I'll be flying back to spend Easter with my family in West Virginia. We may be hunting for Easter eggs in the snow with my great nephew Will.
I'll be reading one of my "works in progress" at Gorgeous Stories, "brave, moving and often hilarious new work" from Terrie Silverman's workshops, on Friday, March 14, at 7:30 pm at the Church of the Angels in Pasadena. (Call or email me for more details.) I call my piece "Strangers in the Night," and, no, it's not about cancer.
I'm working on revamping my Open Mouth, Insert Fork blog site and will start posting on that site when the rehab is complete.
I'll be seeing many of my local gal pals this Saturday at my first annual Take Comfort! party, a celebration of the food, beverages, music and friendships that give us comfort. I'm hoping that, as a side benefit, the high-fat comfort foods of chips and dips, mac 'n' cheese, meatloaf, cole slaw and plenty of chocolate-based desserts will add some "junk in the trunk."
Not much is new in cancer world, but a lot is going on in my new, non-patient world. And that's just the way I like it.
Tom to the rescue!
My friends DeAnna and Karyn, who live in Minneapolis, have two sweet little boys, including 4-year-old Tom. If you'll remember, Tom and WCK are scheduled to be married in about 25 years at the Chapel of Love at the Mall of America. (Reception to be held at the food court overlooking Camp Snoopy, or whatever they're calling the amusement park these days) After I posted about raising money for Jackie Malena and also e-mailed nearly everyone I know, I got this e-mail from DeAnna:
"I visited her website and was horrified, and I don't even know the woman. We have started to do money management with Tom, where every time he gets money, he puts some in an envelope to save, some to spend, and some to share (I think this comes from a website, like savesharespend.org, or something). So I told this story to Tom (well, I made it far less sad and frustrating than it actually is: Karen's friend is sick, she has two small kids, and getting well costs a lot of money), and I suggested that maybe he would like to send some of his Share money to the lady to help her get well. He said -- and I quote -- 'Yeah, I would like to help! Because I'm a good helper!' Oh, man. So sweet, but so funny, too. So eventually Tom will send you like $4.81 in an envelope."
Tom is a really good man. I'm so lucky to have him as my son-in-law.
"I visited her website and was horrified, and I don't even know the woman. We have started to do money management with Tom, where every time he gets money, he puts some in an envelope to save, some to spend, and some to share (I think this comes from a website, like savesharespend.org, or something). So I told this story to Tom (well, I made it far less sad and frustrating than it actually is: Karen's friend is sick, she has two small kids, and getting well costs a lot of money), and I suggested that maybe he would like to send some of his Share money to the lady to help her get well. He said -- and I quote -- 'Yeah, I would like to help! Because I'm a good helper!' Oh, man. So sweet, but so funny, too. So eventually Tom will send you like $4.81 in an envelope."
Tom is a really good man. I'm so lucky to have him as my son-in-law.
Doc. visit follow-up
I had a pretty good doctor’s visit yesterday, it was just so long. I got in two naps, went through two playlist (15 or more songs each) on my IPod, heard 3 speeches on the IPod, and watched an hours worth of Barney on TV. The Barney part is funny as I was told I could turn away from that channel after the lady with the small child left the waiting area; the only thing is that I am immune to children’s programs I can watch hours of the stuff without a second thought (my daughters have trained me well). By the way my new favorite children’s show is Word World.
Sorry for the tangent above. The doctor’s visit (Lung transplant side of the house) went well; all test and test results were fine this month. My blood work looked good, the X-Ray was clear, and my spirometry is up (FVC is 82% and FEV1 is 84%) I am not at 100% but I hope to get there as the cold and flu season passes I will be able to hit the gym without too many fears which will strengthen my lungs, and build my body up again. I am able to stop some of the meds that I have been on since transplant as I am quickly approaching my first anniversary (3/6/07). The doctors did notice a slight rub when listening to my lungs on the right side around the rib cage, I think it is just scar tissue, I happen to have a lot of scar tissue.
That’s all for now.
Sorry for the tangent above. The doctor’s visit (Lung transplant side of the house) went well; all test and test results were fine this month. My blood work looked good, the X-Ray was clear, and my spirometry is up (FVC is 82% and FEV1 is 84%) I am not at 100% but I hope to get there as the cold and flu season passes I will be able to hit the gym without too many fears which will strengthen my lungs, and build my body up again. I am able to stop some of the meds that I have been on since transplant as I am quickly approaching my first anniversary (3/6/07). The doctors did notice a slight rub when listening to my lungs on the right side around the rib cage, I think it is just scar tissue, I happen to have a lot of scar tissue.
That’s all for now.
what I've learned
The following is taken from an e-mail a friend from under Grad. sent to me the other day, thanks D.
'A good friend will come bail you out of jail
But a true friend will be sitting next to you saying
WE screwed up, but we had fun! '
Proud to be your Friend!
I've learned...that life is like a roll of toilet paper.
The closer it gets to the end, the faster it goes.
I've learned...that we should be glad God doesn't give us everything we ask for.
I've learned...that money doesn't buy class.
I've learned...that it's those small daily happenings that make life so spectacular.
I've learned...that under everyone's hard shell is someone who wants to be appreciated and loved.
I've learned...that the Lord didn't do it all in one day. What makes me think I can?
I've learned...that to ignore the facts does not change the facts.
I've learned...that the less time I have to work, the more things I get done.
'A good friend will come bail you out of jail
But a true friend will be sitting next to you saying
WE screwed up, but we had fun! '
Proud to be your Friend!
I've learned...that life is like a roll of toilet paper.
The closer it gets to the end, the faster it goes.
I've learned...that we should be glad God doesn't give us everything we ask for.
I've learned...that money doesn't buy class.
I've learned...that it's those small daily happenings that make life so spectacular.
I've learned...that under everyone's hard shell is someone who wants to be appreciated and loved.
I've learned...that the Lord didn't do it all in one day. What makes me think I can?
I've learned...that to ignore the facts does not change the facts.
I've learned...that the less time I have to work, the more things I get done.
Wednesday, February 27, 2008
beautiful prose
"There continues to be no evidence of recurrent metastatic disease on images of the abdomen."
This means that I will continue to go for only one treatment a month, indefinitely.
As for the long run, who knows? As my oncologist said today, 16 years ago women with liver metastases were dead within a few months. Given that this is my
We are travelling in uncharted waters, my oncologist and I (the drug combination I am on, herceptin and vinorelbine, is not even a recognized treatment yet in
Fear of fudge
Most of the time, I believe that WCK not really my child because she is actually a little clone of me. We are alike in so many ways. Then there are days when I believe she is not really my child because we can't possibly be genetically related. Today, for example, she ran away screaming from a free sample of fudge. Fudge. I would take a bath in fudge if I could.
Today's outing with the MOMS Club was a trip to Chip's Chocolate Factory at Crown Center, to be followed by lunch at a train-themed restaurant, where they actually deliver your food on little trains. We are always trying to go to this restaurant, and every time, something prevents us from going. This time, though, we were going to make it after all. I thought it was going to be the MOST. FUN. MORNING. EVER. For $4 a kid, we'd get a candy-making demonstration at the chocolate factory and a goody bag of chocolate to take home. All was well until about five minutes into the demonstration, when the Fudge-Making Guy started tossing liquid fudge dramatically into the air. All of the other kids were enthralled. WCK freaked out.
"WANT TO GO HOME!" she shrieked in the face of the flying fudge. "WANT TO GO HOME!!"
I tried taking her around the chocolate store and distracting her with all of the amazing things in the display cases, including something called "Cheesecake on a Stick". No luck. Then I thought maybe she'd calm down if we went out into the mall area and walked in the hallway for a while. WCK tried to make a mad dash for the car, wanting to get as far away from the fudge as possible. Of course, we couldn't actually go to the car unless we went back to the chocolate factory to retrieve our coats, diaper bag, and, of course, car keys. This sounds very logical, but it isn't really something you can explain to a two-year-old who is lying on the floor of Crown Center screaming because she's afraid she's going to be attacked by fudge.
I finally got her back into the chocolate factory, where the demonstration had ended and Fudge-Making Guy was handing out free samples of fudge. "Ah!" I thought. "A spoonful of fudge will turn her around!"
Nope. WCK shrieked at the fudge as though I were trying to give her rat poison. Anxious tears streamed from her eyes. I hurried up and paid our $4 and got our goody bag (which, fortunately, included a large block of fudge, which I am eating right now to soothe my soul) and high-tailed it out of there. She didn't want to walk. She didn't want to be carried. It was one of those long, scream-filled, stop-to-wrestle-the-two-year-old-every-five-seconds walks back to the car. I didn't think we were going to make it. Finally, we burst out of the doors of Crown Center and into the parking garage.
"THAT WAS FUN!" exclaimed WCK brightly.
Fudge. I need more fudge.
Today's outing with the MOMS Club was a trip to Chip's Chocolate Factory at Crown Center, to be followed by lunch at a train-themed restaurant, where they actually deliver your food on little trains. We are always trying to go to this restaurant, and every time, something prevents us from going. This time, though, we were going to make it after all. I thought it was going to be the MOST. FUN. MORNING. EVER. For $4 a kid, we'd get a candy-making demonstration at the chocolate factory and a goody bag of chocolate to take home. All was well until about five minutes into the demonstration, when the Fudge-Making Guy started tossing liquid fudge dramatically into the air. All of the other kids were enthralled. WCK freaked out.
"WANT TO GO HOME!" she shrieked in the face of the flying fudge. "WANT TO GO HOME!!"
I tried taking her around the chocolate store and distracting her with all of the amazing things in the display cases, including something called "Cheesecake on a Stick". No luck. Then I thought maybe she'd calm down if we went out into the mall area and walked in the hallway for a while. WCK tried to make a mad dash for the car, wanting to get as far away from the fudge as possible. Of course, we couldn't actually go to the car unless we went back to the chocolate factory to retrieve our coats, diaper bag, and, of course, car keys. This sounds very logical, but it isn't really something you can explain to a two-year-old who is lying on the floor of Crown Center screaming because she's afraid she's going to be attacked by fudge.
I finally got her back into the chocolate factory, where the demonstration had ended and Fudge-Making Guy was handing out free samples of fudge. "Ah!" I thought. "A spoonful of fudge will turn her around!"
Nope. WCK shrieked at the fudge as though I were trying to give her rat poison. Anxious tears streamed from her eyes. I hurried up and paid our $4 and got our goody bag (which, fortunately, included a large block of fudge, which I am eating right now to soothe my soul) and high-tailed it out of there. She didn't want to walk. She didn't want to be carried. It was one of those long, scream-filled, stop-to-wrestle-the-two-year-old-every-five-seconds walks back to the car. I didn't think we were going to make it. Finally, we burst out of the doors of Crown Center and into the parking garage.
"THAT WAS FUN!" exclaimed WCK brightly.
Fudge. I need more fudge.
Tuesday, February 26, 2008
Kicking Ass and Taking Names
Ever since I've been diagnosed, many people have told me stories of survival in order to encourage and support me through my treatment. I'm grateful for those stories, but the ones that really keep me fighting are the stories and experiences of my own family. Besides thinking of my brother-in-law George who passed away from lung cancer this summer, I also often have on my mind my great-aunt Betty, who passed away from breast cancer over twenty years ago.
And now, I'd like to pay tribute to my Uncle Pen, who kicked cancer's ass about ten years ago. Uncle Pen is definitely my favorite uncle. He had a pet raccoon (which he tamed himself); he caught wild turkeys and wrestled them in our family's pig pen; and he always gives me awesome deer jerky (uh, yeah, if you haven't figured it out by now, this blog is not vegetarian-friendly). He's a real-life Paul Bunyan, even to this day. And while I don't catch animals with my bare hands and kill them on the spot, I think I'm kicking cancer's ass with the same kind of spirit.
Here's me and Uncle Pen, about 30 years ago:
And now, I'd like to pay tribute to my Uncle Pen, who kicked cancer's ass about ten years ago. Uncle Pen is definitely my favorite uncle. He had a pet raccoon (which he tamed himself); he caught wild turkeys and wrestled them in our family's pig pen; and he always gives me awesome deer jerky (uh, yeah, if you haven't figured it out by now, this blog is not vegetarian-friendly). He's a real-life Paul Bunyan, even to this day. And while I don't catch animals with my bare hands and kill them on the spot, I think I'm kicking cancer's ass with the same kind of spirit.
Here's me and Uncle Pen, about 30 years ago:
Fight for Jackie
Once again, I'm in charge of an effort to raise money for a good cause through the MOMS Club. We recently learned of a local mom named Jackie Malena who is battling a rare form of cancer. She's 32 years old and has two little girls. Her (Evil) insurance company is refusing to pay for treatments, so her friends have set up a fund to raise money for her. For more on Jackie's story, visit www.fightforJackie.com. You can donate through PayPal on the site or send a check to the address listed there. You can also send money to me, and I can include it with our MOMS Club donation. We're hoping to send our contribution by the end of March.
I really, really want to help, because I know that if our insurance company was refusing to pay for things, we would be out of luck. I either wouldn't be able to afford treatment, or I'd be getting the Old-Fashioned Myeloma treatments -- the kind that give you just, like, three years to live at the most. My Revlimid costs nearly $8,000 for 21 pills. My stem-cell harvest cost $50,000. We pay a $20 co-pay for the Rev, and we didn't pay a cent for the harvest. Insurance even reimbursed us for our lodging costs when we were in Rochester for three weeks. We're really, really, really lucky here.
Now, if insurance wanted to deny me access to the Dex, that would be fine with me.
I really, really want to help, because I know that if our insurance company was refusing to pay for things, we would be out of luck. I either wouldn't be able to afford treatment, or I'd be getting the Old-Fashioned Myeloma treatments -- the kind that give you just, like, three years to live at the most. My Revlimid costs nearly $8,000 for 21 pills. My stem-cell harvest cost $50,000. We pay a $20 co-pay for the Rev, and we didn't pay a cent for the harvest. Insurance even reimbursed us for our lodging costs when we were in Rochester for three weeks. We're really, really, really lucky here.
Now, if insurance wanted to deny me access to the Dex, that would be fine with me.
what i did on my winter vacation
I can't seem to string two sentences together today (believe me, I've been trying) so instead of a more substantive post, I will provide you with more photos of one of the world's most photogenic children.
These were taken in Sarasota, Florida, on the rare occasions when I remembered to bring my camera.
I need to figure out how to work the zoom on my little camera. Watching my little man paddle away in the kayak with Grandpa, really turned my insides to mush.
While Grandpa and Bubbie went for a little paddle (I went out, too, although I didn't do much paddling, just glided along while my father-in-law did all the work), D. and I played on the beach (just the over the hill from the bay where we went paddling):
D. asked me to lie down, so he could trace my shape in the sand. I was impressed that I had the agility to get up without blurring his work. I was less impressed with my shape in the sand which was distinctly, um, bottom heavy. The hour glass has been replaced with a pear, it seems.
D. especially loved the palm trees, which he insisted on calling "coco-palms" even though we explained that we were too far north for coconuts. He said the ones bearing fruit would be coconut trees and that these were called coco-palm trees.
The child has an uncanny ability to insist on his own version of reality, even when presented with irrefutable evidence to the contrary. If he decides that up is down (or that he was wide awake on the plane and the trip was just really, really short), it is often easier to just let it go then to try and convince him otherwise.
We also went to the circus, saw some alligators (I took pictures but the 'gators look like logs. See above re the zoom) and tasted alligator stew, saw many beautiful birds (although not as many as last year), went to the aquarium and spent lots of time on, in and near the water. Two of my nieces (both really nice people - one is almost 12 and the other will turn 10 this year) were there for part of the time and my father-in-law and his wife are both warm, funny, generous people.
I really lucked out with my spouse's family (so much so that they were a part of my 41 things about T.).
Speaking of my spouse, I think he was a little chagrined with the beautiful weather we had. It was one thing to say, "It's OK, honey, you go to Florida without me. I really need to stay and work," when he thought the weather would be cool and perhaps even rainy. However, it turned out to unseasonably hot and gorgeous every day.
He and my older son S. had a pretty good time, though. They rented a wii, played games with friends on the big screen in T.'s office, went skating on the canal and watched lots of movies. They probably sat around eating junk food in their underwear, too.
As for little D. and I, it was wonderful to be able to spend so much time together. He is growing up so quickly. I don't really have the words to explain how cool it is to watch him grow and learn, hear his observations on the world (absolutely nothing gets by him, even when you think he's not listening). He is one sharp kid.
One night when I was getting him ready for bed, he said, "Mama, I love you as much as all the days." He has said this before.
"I love you as much as all the lives of everyone in the world. That's forever."
And then came the kicker.
"I love you even when I'm mad at you."
These were taken in Sarasota, Florida, on the rare occasions when I remembered to bring my camera.
I need to figure out how to work the zoom on my little camera. Watching my little man paddle away in the kayak with Grandpa, really turned my insides to mush.
While Grandpa and Bubbie went for a little paddle (I went out, too, although I didn't do much paddling, just glided along while my father-in-law did all the work), D. and I played on the beach (just the over the hill from the bay where we went paddling):
D. asked me to lie down, so he could trace my shape in the sand. I was impressed that I had the agility to get up without blurring his work. I was less impressed with my shape in the sand which was distinctly, um, bottom heavy. The hour glass has been replaced with a pear, it seems.
D. especially loved the palm trees, which he insisted on calling "coco-palms" even though we explained that we were too far north for coconuts. He said the ones bearing fruit would be coconut trees and that these were called coco-palm trees. The child has an uncanny ability to insist on his own version of reality, even when presented with irrefutable evidence to the contrary. If he decides that up is down (or that he was wide awake on the plane and the trip was just really, really short), it is often easier to just let it go then to try and convince him otherwise.
We also went to the circus, saw some alligators (I took pictures but the 'gators look like logs. See above re the zoom) and tasted alligator stew, saw many beautiful birds (although not as many as last year), went to the aquarium and spent lots of time on, in and near the water. Two of my nieces (both really nice people - one is almost 12 and the other will turn 10 this year) were there for part of the time and my father-in-law and his wife are both warm, funny, generous people.I really lucked out with my spouse's family (so much so that they were a part of my 41 things about T.).
Speaking of my spouse, I think he was a little chagrined with the beautiful weather we had. It was one thing to say, "It's OK, honey, you go to Florida without me. I really need to stay and work," when he thought the weather would be cool and perhaps even rainy. However, it turned out to unseasonably hot and gorgeous every day.
He and my older son S. had a pretty good time, though. They rented a wii, played games with friends on the big screen in T.'s office, went skating on the canal and watched lots of movies. They probably sat around eating junk food in their underwear, too.
As for little D. and I, it was wonderful to be able to spend so much time together. He is growing up so quickly. I don't really have the words to explain how cool it is to watch him grow and learn, hear his observations on the world (absolutely nothing gets by him, even when you think he's not listening). He is one sharp kid.
One night when I was getting him ready for bed, he said, "Mama, I love you as much as all the days." He has said this before.
"I love you as much as all the lives of everyone in the world. That's forever."
And then came the kicker.
"I love you even when I'm mad at you."
Another BAC has been transplanted
Another member of the lung cancer family, a BAC has been transplanted, the operation took place several weeks ago and from what I hear the new transplant family member is doing well. Good luck, e-mail / call if you have any questions that I can answer.
Doc Visit in the Morn.
I have my monthly visit with the Lung Transplant Docs. at UT SouthWestern in the morn. I hope all goes well, I am a little worried about my spirometry test as I am coughing (as always) up a little bit of crude. We shall see how it goes in the morn.
Monday, February 25, 2008
Sunny Days, Sweeping those Clouds Away
The weather in Vancouver has been splendid. Fifty degrees, sunny, clear blue skies. My parents, who arrived last week from Pennsylvania where the temperature is frigid and there are buckets of snow, think it's cold here. Their perception of the weather reminds me to remember--everything in context.
I'm riding a roller coaster around and around. Sometimes, I sink into an unforgiving existentialist mindset that sucks. Other times, I feel like skipping down the sidewalk, despite the sharp breaks that threaten to trip me up.
For instance, last night, I felt brave enough to pick up "The Idiot's Guide to Living with Breast Cancer" and flipped through it before going to sleep. The book has been collecting dust on my shelf for, oh, six months. As light and supportive as the authors try to make the material out to be, my mind got hooked on the fact that I was reading a handbook that included a straightforward chapter on dying and accepting death. I'm really not ready to learn this how-to. I don't feel this is my context, yet.
My situation is serious. My chart at the cancer agency says so. But I don't feel like it is. Sure, some days I feel like the biggest pile of poo ever, but I don't honestly believe that I'm going to die any time soon. I just don't. How could I? I have two of the loveliest children to ever have been born, a wonderfully caring and scary-smart/charismatic/handsome husband, family and friends who care enough to write/call/email me and say "you're not a loser!"...Yeah, I'm not going to die. I am invincible right now, in this context.
I'm riding a roller coaster around and around. Sometimes, I sink into an unforgiving existentialist mindset that sucks. Other times, I feel like skipping down the sidewalk, despite the sharp breaks that threaten to trip me up.
For instance, last night, I felt brave enough to pick up "The Idiot's Guide to Living with Breast Cancer" and flipped through it before going to sleep. The book has been collecting dust on my shelf for, oh, six months. As light and supportive as the authors try to make the material out to be, my mind got hooked on the fact that I was reading a handbook that included a straightforward chapter on dying and accepting death. I'm really not ready to learn this how-to. I don't feel this is my context, yet.
My situation is serious. My chart at the cancer agency says so. But I don't feel like it is. Sure, some days I feel like the biggest pile of poo ever, but I don't honestly believe that I'm going to die any time soon. I just don't. How could I? I have two of the loveliest children to ever have been born, a wonderfully caring and scary-smart/charismatic/handsome husband, family and friends who care enough to write/call/email me and say "you're not a loser!"...Yeah, I'm not going to die. I am invincible right now, in this context.
happy and home
And exhausted.We had such a wonderful time.
And it will only be winter for a few more weeks, right? Right?
Monarchs
I have a kind of interesting hobby. I raise Monarch butterflies from eggs.
I was at home with my kids when they were small. I only worked weekends, when my husband was home, and I tried to do the "earth mother" kind of thing sometimes. We spent a lot of time in county parks, we planted gardens, we made a bird sanctuary in our yard. I read them a book once about raising monarch butterflies and we decided to try it. It's a wonderful thing to do.
In late August when the Monarchs migrate to our part of the country, I follow one to a milkweed plant. There the butterfly lays a single egg the size of the head of a pin on only the underside of the leaf of a milkweed plant. Monarchs only lay eggs on the underside of a leaf as the eggs are then protected. Bitter milkweed leaves are the sole food of the monarch caterpiller, so when the eggs hatch, they have a ready supply of food.
I bring part of the plant with the newly laid single egg on the underside of the leaf home and put it in a glass terrarium. We watch as the egg hatches later and a very tiny caterpillar is released. It does nothing but climb up and down the plant looking for leaves to eat. It eats slowly and methodically all day every day for it's entire catarpillar existance. It does nothing but eat and rest and never leaves the milkweed plant it's entire life. I bring new branches of fresh milkweed leaves home every day. It sheds its skin a few times as it outgrows it.
One day, the caterpillar climbs a stick in the terrarium and spins a tiny network of webbing, as a spider does, on the arm of the stick. It puts it's feet in the web and hangs upside down, assuming the shape of a J. Its skin splits across its back, and its outer body, legs, head and all, falls into a heap on the floor leaving a wet, slimy mess of its insides.
But in just minutes, the slimy gooey mess hardens to become a beautiful green crysalis, an elegant green tomb with sparkles of golden glitter on it's edges.
After a week or two, the tomb becomes black, then clear. When the crysalis becomes clear, you can see the monarch butterfly inside.
The butterfly finally breaks free of it's tomb. It will sometimes spend the better part of an hour on my finger as it spreads its new wings for the first time. It seems to contemplate its new reality for awhile before it finally takes off in flight.
The Monarch butterfly then leaves me and flies away to congregate with hundreds of thousands of other Monarch butterflies that all meet at the same time every year in Mexico or California. It no longer eats bitter milkweed leaves, but the sweet nectar of flowers. I always wonder how it knows to find it's way across the country, I have a terrible sense of direction. Do the butterflies recognize or know each other when they arrive for the butterfly reunion?
I've always loved the Monarchs, but now they are very symbolic to me of the eternity I believe in. I always wonder if the caterpillar in its wildest imagination ever knew of the beautiful and free butterfly it would become. I wonder if it was ever afraid to leave it's life as a caterpillar, if it ever even imagined the world it would see and the places it would go as a butterfly.
I met a woman this year for the first time just hours before she died of signet ring appendix cancer. I wanted to bring her a gift. I brought her a photo of beautiful and free Monarch butterflies.
I thought of the Monarchs today when I read this quote by Patrick Overton:
When you have come to the edge of all the light you have
And step into the darkness of the unknown .
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!
I was at home with my kids when they were small. I only worked weekends, when my husband was home, and I tried to do the "earth mother" kind of thing sometimes. We spent a lot of time in county parks, we planted gardens, we made a bird sanctuary in our yard. I read them a book once about raising monarch butterflies and we decided to try it. It's a wonderful thing to do.
In late August when the Monarchs migrate to our part of the country, I follow one to a milkweed plant. There the butterfly lays a single egg the size of the head of a pin on only the underside of the leaf of a milkweed plant. Monarchs only lay eggs on the underside of a leaf as the eggs are then protected. Bitter milkweed leaves are the sole food of the monarch caterpiller, so when the eggs hatch, they have a ready supply of food. 
I bring part of the plant with the newly laid single egg on the underside of the leaf home and put it in a glass terrarium. We watch as the egg hatches later and a very tiny caterpillar is released. It does nothing but climb up and down the plant looking for leaves to eat. It eats slowly and methodically all day every day for it's entire catarpillar existance. It does nothing but eat and rest and never leaves the milkweed plant it's entire life. I bring new branches of fresh milkweed leaves home every day. It sheds its skin a few times as it outgrows it.
One day, the caterpillar climbs a stick in the terrarium and spins a tiny network of webbing, as a spider does, on the arm of the stick. It puts it's feet in the web and hangs upside down, assuming the shape of a J. Its skin splits across its back, and its outer body, legs, head and all, falls into a heap on the floor leaving a wet, slimy mess of its insides. 
But in just minutes, the slimy gooey mess hardens to become a beautiful green crysalis, an elegant green tomb with sparkles of golden glitter on it's edges. 
After a week or two, the tomb becomes black, then clear. When the crysalis becomes clear, you can see the monarch butterfly inside. 
The butterfly finally breaks free of it's tomb. It will sometimes spend the better part of an hour on my finger as it spreads its new wings for the first time. It seems to contemplate its new reality for awhile before it finally takes off in flight. 
The Monarch butterfly then leaves me and flies away to congregate with hundreds of thousands of other Monarch butterflies that all meet at the same time every year in Mexico or California. It no longer eats bitter milkweed leaves, but the sweet nectar of flowers. I always wonder how it knows to find it's way across the country, I have a terrible sense of direction. Do the butterflies recognize or know each other when they arrive for the butterfly reunion?I've always loved the Monarchs, but now they are very symbolic to me of the eternity I believe in. I always wonder if the caterpillar in its wildest imagination ever knew of the beautiful and free butterfly it would become. I wonder if it was ever afraid to leave it's life as a caterpillar, if it ever even imagined the world it would see and the places it would go as a butterfly.
I met a woman this year for the first time just hours before she died of signet ring appendix cancer. I wanted to bring her a gift. I brought her a photo of beautiful and free Monarch butterflies.
I thought of the Monarchs today when I read this quote by Patrick Overton:When you have come to the edge of all the light you have
And step into the darkness of the unknown .
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!
Saturday, February 23, 2008
Friday, February 22, 2008
Cowtown Preview / Lung Cancer Conference
Good Luck in the Cowtown tomorrow Jan, your first Ultra; also good luck Ben as you compete in the Ultra tomorrow.
I am learning alot about LC (lung cancer) during the various presentations at this conference. One thing that seems to stick out to me is that research and attempts at finding a cure are grossly under funded as more than 80% of the funding for research comes from govt. agencies. LC is not a smoker’s disease it affects all of us and cripples the communities it is embedded in.
I am learning alot about LC (lung cancer) during the various presentations at this conference. One thing that seems to stick out to me is that research and attempts at finding a cure are grossly under funded as more than 80% of the funding for research comes from govt. agencies. LC is not a smoker’s disease it affects all of us and cripples the communities it is embedded in.
Lung Cancer is a National Crime
Lung cancer is a national crime, a national health epidemic. Statistically lung cancer kills more people/patients annually when compared to all of the other cancer(s) combined. Lung Cancer is not politically in vogue like the other cancer that society and of course our elected officials rally behind. Lung cancer will always be the #1 cancer killer until govt. and industry support research that will curb the epidemic that is lung cancer. It does no good to have funds established for programs that help lung cancer patients deal with the cancer (lung cancer) while we are going through treatment for the disease, use that money to find a cure up front and you won't need to ease your conscious by pampering lung cancer patients when we are ailing.
Bonnie J. Addario will be on Nancy Grace
Tune in to “Nancy Grace” on Monday, February 25, 20088pm ET / 5pm PT on HEADLINE NEWS“Nancy Grace” is television’s only justice themed/interview/debate show, designed for those interested in the justice story of the day. Bonnie J. Addario and Board member Deborah Morosini, MD will discuss Lung Cancer
http://www.thelungcancerfoundation.org Bonnie J. Addario
http://www.cnn.com/CNN/Programs/nancy.grace/ Nancy Grace
Bonnie J. Addario will be on Nancy Grace
Tune in to “Nancy Grace” on Monday, February 25, 20088pm ET / 5pm PT on HEADLINE NEWS“Nancy Grace” is television’s only justice themed/interview/debate show, designed for those interested in the justice story of the day. Bonnie J. Addario and Board member Deborah Morosini, MD will discuss Lung Cancer
http://www.thelungcancerfoundation.org Bonnie J. Addario
http://www.cnn.com/CNN/Programs/nancy.grace/ Nancy Grace
Sucking up to the vacuum
I've posted before about WCK's big fear of the vacuum cleaner. A long time ago, she was also afraid of my blow drier. I solved the problem by buying her a teeny tiny pink Disney princess blow drier of her own. This went over very well. Whenever I would dry my hair, she'd stand behind me with her little pink drier and "dry" her own hair, and everything was fine. Now she's gotten used to the big blow drier and doesn't really care.
I thought a similar thing might work with the vacuum. For Christmas, my mom bought WCK a little tiny Hoover Wind Tunnel vacuum. It looks EXACTLY like our real vacuum, only it's about two feet high. Supposedly, if you put some batteries in it, it will make "realistic vacuum noises" and will really pick up dirt. I was excited about the new little vacuum, but WCK was not. She was less than enthusiastic when she opened one of her Christmas presents and found a tiny version of her arch enemy.
"How 'bout a different present?" she said.
When we got home from my parents' house, she demanded that we banish the little vacuum to the closet. She never wanted to see it again.
The vacuum sat in the closet for months. Then, about a week ago, she asked if we could take the little vacuum out of the closet. She didn't want to take it out of the box, or even touch it, but she really wanted to look at it. She was really interested in the fact that there was a little picture of a tornado on the front, "Just like in Wiz Oz!" The tiny-vacuum-in-a-box sat in a corner for several days until the other morning, when she asked if we could take it out of the box. Again, we had to look at it for a while until she worked up the nerve to touch it. Now? It is her FAVORITE. TOY. EVER. She loves to push it around and attach the little tools to the hose. Granted, we have not tried the batteries or the "realistic" noises, but this is huge progress.
And that's not all. Yesterday, she asked me if we could get MOMMY'S vacuum out of the closet. That's right: She wanted the big vacuum. Suddenly she was claiming to "loooooove" the big vacuum, giving the big vacuum hugs and kisses, talking to it, and posing for photos with it. Before her nap yesterday, she had to say goodnight to the vacuum before she would go into her room. If we go upstairs to play, we have to carry the vacuum up there with us. Back downstairs? Bring the vacuum back down.
WCK and the vacuum are in love. They might be getting married soon.
As much as I thought I wanted a WCK-vacuum romance, I'm wondering if I'm really ready for this. If she begins loving the vacuum, I'll no longer have an excuse to not clean the house. I'll actually have to be a hard-working MOMS Club VP and stay late at the meetings and help clean up. Right now, WCK and I usually have to make a mad dash toward the exit when cleanup begins, because there's usually at least one vacuum involved, sometimes an industrial-strength one that is extra scary. I get out of all the work because of my hysterical child. What to do? What to do?
Now that we know that this works, though, I think I'll go out and buy a toy ironing board so I can finally wear some wrinkle-free clothing for a change.
I thought a similar thing might work with the vacuum. For Christmas, my mom bought WCK a little tiny Hoover Wind Tunnel vacuum. It looks EXACTLY like our real vacuum, only it's about two feet high. Supposedly, if you put some batteries in it, it will make "realistic vacuum noises" and will really pick up dirt. I was excited about the new little vacuum, but WCK was not. She was less than enthusiastic when she opened one of her Christmas presents and found a tiny version of her arch enemy.
"How 'bout a different present?" she said.
When we got home from my parents' house, she demanded that we banish the little vacuum to the closet. She never wanted to see it again.
The vacuum sat in the closet for months. Then, about a week ago, she asked if we could take the little vacuum out of the closet. She didn't want to take it out of the box, or even touch it, but she really wanted to look at it. She was really interested in the fact that there was a little picture of a tornado on the front, "Just like in Wiz Oz!" The tiny-vacuum-in-a-box sat in a corner for several days until the other morning, when she asked if we could take it out of the box. Again, we had to look at it for a while until she worked up the nerve to touch it. Now? It is her FAVORITE. TOY. EVER. She loves to push it around and attach the little tools to the hose. Granted, we have not tried the batteries or the "realistic" noises, but this is huge progress.
And that's not all. Yesterday, she asked me if we could get MOMMY'S vacuum out of the closet. That's right: She wanted the big vacuum. Suddenly she was claiming to "loooooove" the big vacuum, giving the big vacuum hugs and kisses, talking to it, and posing for photos with it. Before her nap yesterday, she had to say goodnight to the vacuum before she would go into her room. If we go upstairs to play, we have to carry the vacuum up there with us. Back downstairs? Bring the vacuum back down.
WCK and the vacuum are in love. They might be getting married soon.
As much as I thought I wanted a WCK-vacuum romance, I'm wondering if I'm really ready for this. If she begins loving the vacuum, I'll no longer have an excuse to not clean the house. I'll actually have to be a hard-working MOMS Club VP and stay late at the meetings and help clean up. Right now, WCK and I usually have to make a mad dash toward the exit when cleanup begins, because there's usually at least one vacuum involved, sometimes an industrial-strength one that is extra scary. I get out of all the work because of my hysterical child. What to do? What to do?
Now that we know that this works, though, I think I'll go out and buy a toy ironing board so I can finally wear some wrinkle-free clothing for a change.
Thursday, February 21, 2008
Lung Cancer Winter SPORE
(I am in very cold Santa Monica right now attending the LC Winter SPORE meetings. I hope that I will be able to effect change and contribute in some small way so that we can change the data, and perception of lung cancer.
I am also nervous b/c the last time I checked UNOS (The United Network for Organ Sharing) http://www.unos.org/ the website only showed two BAC lung cancer patients listed nationwide waiting for a transplant; I am hoping to see that number increase to 3 or 4 soon maybe, possibly.....
There is always HOPE; you can live dying or dye living....
I am also nervous b/c the last time I checked UNOS (The United Network for Organ Sharing) http://www.unos.org/ the website only showed two BAC lung cancer patients listed nationwide waiting for a transplant; I am hoping to see that number increase to 3 or 4 soon maybe, possibly.....
There is always HOPE; you can live dying or dye living....
Wednesday, February 20, 2008
Blut und Boden
So. I've got a new disease. Or condition. It's rare, only five people per million are diagnosed with it annually. I think "people" might mean Americans, or rather, US residents--because "Americans" includes people from the Arctic Archipelago to Tierra del Fuego. But I'm dancing around the point. Attentive readers of this blog will recall that I have too many platelets in my blood (AKA essential thrombocythemia). I've found out I also have too many red blood cells. The official term is polycythemia vera . I have the non-hereditary gene mutation, JAK2, which is found in 95 percent of the people who have this. My hematologist (you know you're in trouble when you have a hematologist) told me yesterday I probably had it, and she looked at my blood results today and confirmed it. I make too many things, I said to the hematologist yesterday--starting with cancer, which is the production of too many cells in an uncontrolled way. She said, Yes, you make too many things. The first-line treatment for this, she told me, comes from the 13th century. Leeches? I asked, because I'd seen an article in the New Yorker about their use but hadn't read the piece yet. Not leeches, she said, but you get a phlebotomy. You go to LifeSource and get a pint taken out. You can't donate this pint because it's filled with too-thick blood. Where does it go? I asked. Probably into a biohazard bag and then to a landfill, she said. I thought of my blood seeping into the earth. Blut und Boden.
It seems a shame to waste this blood. To spill it. If Venus flytraps snap up hamburger meat, couldn't they sup on some blood? Could blood be used as plant food? (Alas, I am finding through the 'net that flytraps feed on bugs, not hamburger meat.) Believe it or not, someone else has thought to ask about feeding blood to the flytraps. Unfortunately, you can't tell if the answers have merit.
So the plan is to give a pint on Tuesday (the first time I could get an appointment) and then two weeks later, then go to Fancy Hospital to get my blood tested, talk to the doctor, and probably have two more sessions two weeks apart. From there I would probably get my "prophylactic phlebotomy" every one, two or three months.
I need to rid myself of this thick blood because otherwise it maybe maybe maybe could cause blood clots, stroke, heart attack. I am a funny person to have this disease because it most often strikes men over 60. I have learned what the signs of a blood clot are and that you can get an ultrasound to show if you have one. If this "venesection," as the Brits call it, doesn't work, then there's Plan B, which involves chemotherapy. Mild. In the form of a pill called hydroxyurea.
There are other funny (strange, not ha-ha) things. My hematologist asked if I had itching. I said, mostly after taking a shower, and she said that's a symptom. It's funny because it's a phenomenon I had noticed but I hadn't thought it meant anything. I also had noticed that my gums were bleeding after flossing, and that's a symptom, too. I also have hot flashes, which is not news to attentive blog readers or anyone who has been in a room with me lately. While flashing, my face and ears turn red. The doctor said that the phlebotomy might help with the redness and sweating. So that's good news. (I keep thinking "lobotomy" and have to remind myself that one is brain and one is blood. No ice picks for Cancer Bitch.)
In case you want a leech of your own, click here. Note that leeches are non-returnable.
It seems a shame to waste this blood. To spill it. If Venus flytraps snap up hamburger meat, couldn't they sup on some blood? Could blood be used as plant food? (Alas, I am finding through the 'net that flytraps feed on bugs, not hamburger meat.) Believe it or not, someone else has thought to ask about feeding blood to the flytraps. Unfortunately, you can't tell if the answers have merit.
So the plan is to give a pint on Tuesday (the first time I could get an appointment) and then two weeks later, then go to Fancy Hospital to get my blood tested, talk to the doctor, and probably have two more sessions two weeks apart. From there I would probably get my "prophylactic phlebotomy" every one, two or three months.
I need to rid myself of this thick blood because otherwise it maybe maybe maybe could cause blood clots, stroke, heart attack. I am a funny person to have this disease because it most often strikes men over 60. I have learned what the signs of a blood clot are and that you can get an ultrasound to show if you have one. If this "venesection," as the Brits call it, doesn't work, then there's Plan B, which involves chemotherapy. Mild. In the form of a pill called hydroxyurea.
There are other funny (strange, not ha-ha) things. My hematologist asked if I had itching. I said, mostly after taking a shower, and she said that's a symptom. It's funny because it's a phenomenon I had noticed but I hadn't thought it meant anything. I also had noticed that my gums were bleeding after flossing, and that's a symptom, too. I also have hot flashes, which is not news to attentive blog readers or anyone who has been in a room with me lately. While flashing, my face and ears turn red. The doctor said that the phlebotomy might help with the redness and sweating. So that's good news. (I keep thinking "lobotomy" and have to remind myself that one is brain and one is blood. No ice picks for Cancer Bitch.)
In case you want a leech of your own, click here. Note that leeches are non-returnable.
Tuesday, February 19, 2008
The Long Winter
It seems like it's been the longest winter ever. Even the snowman in our front yard can't take it anymore. This morning he collapsed onto the ground, face first, his arms outstretched in desperation, as though he can't live with himself one more minute. It's like he's silently screaming to just melt and get it over with. Of course, when WCK saw him out there, prostrate with grief, she asked if she could give him a kiss and a Band-Aid. You have to go and make everything cute, don't you WCK? Even scenes of bleak mid-winter depression.
Update on my drugs: The nurse at the Cancer Center wasn't concerned about the antibiotics and the Coumadin, since I won't be on the antibiotics very long and I'm not on a very high Coumadin dose and don't actually have a clotting disorder. This means I don't have to go in for extra tests. Woo! It's not that it's an extensive test or anything (just a finger prick); I just don't want to spend extra time hanging out in doctors' offices if I don't have to.
It's supposed to be sub-zero tomorrow. I think I'll go lie down, face first, like the snowman for a while.
Update on my drugs: The nurse at the Cancer Center wasn't concerned about the antibiotics and the Coumadin, since I won't be on the antibiotics very long and I'm not on a very high Coumadin dose and don't actually have a clotting disorder. This means I don't have to go in for extra tests. Woo! It's not that it's an extensive test or anything (just a finger prick); I just don't want to spend extra time hanging out in doctors' offices if I don't have to.
It's supposed to be sub-zero tomorrow. I think I'll go lie down, face first, like the snowman for a while.
Violating our assumption of safety....
Yesterday someone asked me questions about my "View From Eighty" blog entry. I initially felt that cancer in one's eighth decade of life wasn't all that unfair. At eighty one has already lived beyond his life expectancy, one's reached an age many of us who are younger and newly diagnosed only dream of reaching now.
But in the end, I came to realize that a cancer diagnosis isn't so much about potentially dying.....it is that, but we all know we will die someday. We accept that. It's really about what the disease that is cancer does to our hearts, minds and souls.
I was in Manhattan just before and just after September 11, 2001. I was actually asked to be in Manhattan on Sept. 11th but was unable to make the arrangements on short notice. I sat on a lawn near the Twin Towers on September 5th. A few months later I visited the memorial, all of the quilts and photos along the wall.
In thinking about that recently, I made a connection. I communicate with newly diagnosed cancer patients every day now. I realized why cancer is, as one patient recently said, "hard, hard, hard". Cancer terrorizes us. And no one, at any age, deserves to be terrorized.
I read a statement today about terrorism; that terrorism "is designed to demoralize its targets by violating the basic assumption that one is safe". After experiencing terrorism in our own country on September 11th 2001, we all questioned our long-held assumption that we were safe. We wondered if a plane in the sky was actually a missle directed as us. No one felt safe using a plane for transportation for awhile, ticket sales plummeted. Every package left in an airport was a potential bomb, a local flu epidemic might be anthrax. We no longer took our safety for granted, we no longer felt well protected, we suddenly felt very vulnerable. We were always looking over our shoulder. Life had changed, life was different. We felt fearful, we felt betrayed, we felt angry, we didn't trust the future. We felt terrorized.
Then I thought, cancer does just that on a more personal level....it terrorizes us. We feel the same when we receive a cancer diagnosis as we did when we watched the Twin Towers collapse. Our world collapses. We are no longer safe, and the threat to our safety is not even something we can control, especially after we've exhausted all available medical therapy following the initial attack. We can't do a lot to protect ourselves from the threat within our own body. Our borders have been breached, the enemy has made it inside. We never know if we have sleeper cells within our own bodies quietly organizing a new attack. Our own biology has turned against us, homegrown terrorism. We are on orange alert most of the time, red alert with every physical exam, CT scan and tumor marker. We can be on red alert for days awaiting CT scan results. It's hard, hard, hard.
We remember the initial attack, so we know how vicious an enemy cancer can be. We've seen other victims slowly and gradually lose everything they've valued over a lifetime when sleeper cells have regrouped and resumed terrorist activities. We've seen the terrorism of cancer in others and watched as they've lost their health,their friends and family, their career, their income, their abilities, their dreams, their physical appearance, their freedom and in the end their lives. Some have been tortured. We know what the terrorist is capable of. We are at war with the terrorist and we know we are vulnerable and will be for a long time.
I read this today, a quote by George Bush from a speech he made following the terrorist attacks on our country in 2001. It can apply to those of us diagnosed with cancer too:
"We have suffered great loss. And in our grief and anger we have found our mission and our moment. Freedom and fear are at war. The advance of human freedom -- the great achievement of our time, and the great hope of every time -- now depends on us."
We need to also find our mission and our moment as survivors in working to support each other and to support those searching for a cure for cancer. We need to find freedom from the dark threat of violence cancer brings to our lives.
We need to finally and forever defeat the terrorist that is cancer.
But in the end, I came to realize that a cancer diagnosis isn't so much about potentially dying.....it is that, but we all know we will die someday. We accept that. It's really about what the disease that is cancer does to our hearts, minds and souls.
I was in Manhattan just before and just after September 11, 2001. I was actually asked to be in Manhattan on Sept. 11th but was unable to make the arrangements on short notice. I sat on a lawn near the Twin Towers on September 5th. A few months later I visited the memorial, all of the quilts and photos along the wall.
In thinking about that recently, I made a connection. I communicate with newly diagnosed cancer patients every day now. I realized why cancer is, as one patient recently said, "hard, hard, hard". Cancer terrorizes us. And no one, at any age, deserves to be terrorized.
I read a statement today about terrorism; that terrorism "is designed to demoralize its targets by violating the basic assumption that one is safe". After experiencing terrorism in our own country on September 11th 2001, we all questioned our long-held assumption that we were safe. We wondered if a plane in the sky was actually a missle directed as us. No one felt safe using a plane for transportation for awhile, ticket sales plummeted. Every package left in an airport was a potential bomb, a local flu epidemic might be anthrax. We no longer took our safety for granted, we no longer felt well protected, we suddenly felt very vulnerable. We were always looking over our shoulder. Life had changed, life was different. We felt fearful, we felt betrayed, we felt angry, we didn't trust the future. We felt terrorized.
Then I thought, cancer does just that on a more personal level....it terrorizes us. We feel the same when we receive a cancer diagnosis as we did when we watched the Twin Towers collapse. Our world collapses. We are no longer safe, and the threat to our safety is not even something we can control, especially after we've exhausted all available medical therapy following the initial attack. We can't do a lot to protect ourselves from the threat within our own body. Our borders have been breached, the enemy has made it inside. We never know if we have sleeper cells within our own bodies quietly organizing a new attack. Our own biology has turned against us, homegrown terrorism. We are on orange alert most of the time, red alert with every physical exam, CT scan and tumor marker. We can be on red alert for days awaiting CT scan results. It's hard, hard, hard.
We remember the initial attack, so we know how vicious an enemy cancer can be. We've seen other victims slowly and gradually lose everything they've valued over a lifetime when sleeper cells have regrouped and resumed terrorist activities. We've seen the terrorism of cancer in others and watched as they've lost their health,their friends and family, their career, their income, their abilities, their dreams, their physical appearance, their freedom and in the end their lives. Some have been tortured. We know what the terrorist is capable of. We are at war with the terrorist and we know we are vulnerable and will be for a long time.
I read this today, a quote by George Bush from a speech he made following the terrorist attacks on our country in 2001. It can apply to those of us diagnosed with cancer too:
"We have suffered great loss. And in our grief and anger we have found our mission and our moment. Freedom and fear are at war. The advance of human freedom -- the great achievement of our time, and the great hope of every time -- now depends on us."
We need to also find our mission and our moment as survivors in working to support each other and to support those searching for a cure for cancer. We need to find freedom from the dark threat of violence cancer brings to our lives.
We need to finally and forever defeat the terrorist that is cancer.
Monday, February 18, 2008
Even a stuffy nose takes effort
It turns out the Martian Death Cold is a sinus infection (or, as I would pronounce it lately, si-dus infecdion). I actually had to go to the Regular Doctor (not the Cancer Doctor). I can't remember the last time I went to a Regular Doctor for something other than my yearly physical. Seriously. I think I had a sore throat in 2002. Before that .... chicken pox in 1985? Anyway, whenever I take the Dex, the sinus infection disappears, only to come roaring back the second the Dex wears off. I couldn't breathe all weekend, but I'm fine today. The doctor said, yeah, that makes sense, because steroids reduce inflammation. She then gave me a steroid nasal spray to use on my non-Dex days. More 'roids!! Woo!
She also gave me an antibiotic, but then said I needed to call the Cancer Center about it, because it can interfere with my Coumadin. I might need some extra INR tests this week. I left a message for My Nurse.
I never used to have anything wrong with me ... and now a cold prompts phone calls to numerous medical professionals, and possibly additional blood tests. Bleh.
The one good thing to come out of this: While I was wandering Wal-Mart waiting for my prescription to be ready, I found a buggy-eyed sheep puppet that baas loudly to the tune of "Easter Parade" when you move its mouth. GREATEST!! PUPPET!! EVER!! Of course, I had to snap it up and set it aside for WCK's Easter basket. When I brought it home, Jay said, "Did you buy that for WCK? Or for you?" Um.
She also gave me an antibiotic, but then said I needed to call the Cancer Center about it, because it can interfere with my Coumadin. I might need some extra INR tests this week. I left a message for My Nurse.
I never used to have anything wrong with me ... and now a cold prompts phone calls to numerous medical professionals, and possibly additional blood tests. Bleh.
The one good thing to come out of this: While I was wandering Wal-Mart waiting for my prescription to be ready, I found a buggy-eyed sheep puppet that baas loudly to the tune of "Easter Parade" when you move its mouth. GREATEST!! PUPPET!! EVER!! Of course, I had to snap it up and set it aside for WCK's Easter basket. When I brought it home, Jay said, "Did you buy that for WCK? Or for you?" Um.
Saturday, February 16, 2008
Shout Hurray! *
* The title of another Mr. Stinky Feet song. It's a sickness.
After a week on the new 12 mg Dex schedule (4 mg on Monday, Wednesday, Friday), I'm happy to report that everything is going really well so far. Every time I take a dose, I get really scared, but there's been no more waking up to drink Diet Coke and write on the blog at 3 a.m. It's like the first time your newborn sleeps through the night: You go to bed expecting to be awake a few hours later, and instead you wake up in the morning, feeling completely stunned, yet feeling rested in what feels like the first time in forever. I'm still trying to get over the Martian Death Cold that I caught from WCK, and the Dex actually makes the cold symptoms go away. On the nights that I take it, I can actually breathe at night, so I actually have been sleeping better when I'm on the Dex.
I shouldn't get too cocky, though. Whenever my Dex dose gets changed, I do pretty well for about a month to six weeks or so, and then it all goes bad again. This week was good, though. One week at a time.
After a week on the new 12 mg Dex schedule (4 mg on Monday, Wednesday, Friday), I'm happy to report that everything is going really well so far. Every time I take a dose, I get really scared, but there's been no more waking up to drink Diet Coke and write on the blog at 3 a.m. It's like the first time your newborn sleeps through the night: You go to bed expecting to be awake a few hours later, and instead you wake up in the morning, feeling completely stunned, yet feeling rested in what feels like the first time in forever. I'm still trying to get over the Martian Death Cold that I caught from WCK, and the Dex actually makes the cold symptoms go away. On the nights that I take it, I can actually breathe at night, so I actually have been sleeping better when I'm on the Dex.
I shouldn't get too cocky, though. Whenever my Dex dose gets changed, I do pretty well for about a month to six weeks or so, and then it all goes bad again. This week was good, though. One week at a time.
All this and . . . high cholesterol too
OK - Who's bored with my bragging about how HEALTHY I ate last year? It's true. Aside from the obligatory biscuits and gravy I scarfed down (repeatedly) in West Virginia, I ate a diet high in fiber, fruits and veggies and low in fat and carbs. I'm putting myself to sleep just writing about this.
So doesn't it follow that my cholesterol would be at its lowest in history? I went in this week for my routine annual physical with my GP and just received the results from my blood test. My cholesterol is nearly 50% higher than it was a year ago. (Except for the "good cholesterol" - that's gone down.)
What the ****? How could this have happened?
And then I remembered the "special diet" that I've been on for the last month. In an effort to pack on the pounds, I've said "bring on the fat." I indulge in half-and-half in my coffee. I suck down Vietnamese French-pressed coffee with sweetened condensed milk. I add half-and-half to the rich homemade soups that friends have made. I slather butter on my bread with abandon. I gulp down 2% instead of non-fat milk. I shovel down cookies made with real butter; dips made with sour cream and mayo; and desserts topped with butter-cream frosting. And let's not forget that chorizo.
It hasn't exactly paid off on the scales. I think I've gained a pound, and, apparently, that's from the thickening of my arteries, not my waistline.
So now I'm back to healthy eating with daily supplements of calorie-boosting Ensure. The high-fat diet was fun while it lasted.
Clarification: My cholesterol was so low last year (good genes) that, even with a big jump, I'm still in the "borderline" category.
So doesn't it follow that my cholesterol would be at its lowest in history? I went in this week for my routine annual physical with my GP and just received the results from my blood test. My cholesterol is nearly 50% higher than it was a year ago. (Except for the "good cholesterol" - that's gone down.)
What the ****? How could this have happened?
And then I remembered the "special diet" that I've been on for the last month. In an effort to pack on the pounds, I've said "bring on the fat." I indulge in half-and-half in my coffee. I suck down Vietnamese French-pressed coffee with sweetened condensed milk. I add half-and-half to the rich homemade soups that friends have made. I slather butter on my bread with abandon. I gulp down 2% instead of non-fat milk. I shovel down cookies made with real butter; dips made with sour cream and mayo; and desserts topped with butter-cream frosting. And let's not forget that chorizo.
It hasn't exactly paid off on the scales. I think I've gained a pound, and, apparently, that's from the thickening of my arteries, not my waistline.
So now I'm back to healthy eating with daily supplements of calorie-boosting Ensure. The high-fat diet was fun while it lasted.
Clarification: My cholesterol was so low last year (good genes) that, even with a big jump, I'm still in the "borderline" category.
Friday, February 15, 2008
Going Wireless
"You must get tired of constantly being poked and jabbed when you're a patient," friends often commented.
"Actually, no," I would explain while yanking out the cord attached to my arm (when I had a PICC line) or from my chest (after the Hickman insertion in July). I rarely felt the jab of a needle for a blood draw or the poke of an IV line insertion. Nurses simply had to hook up to the lumens at the end of my leash for a direct link to my vena cava.
Blood draws, chemo, hydration, medication, blood and platelet transfusions all came through my catheter. I even received my life-saving stem cells through the line.
But the ultimate patient accessory turned into my least favorite fashion accessory. I was reluctant to flaunt my PICC line in public and wore 3/4 length sleeves on the hottest summer days. After doctors swapped the PICC for the Hickman, I worried constantly that the hardware was playing peek-a-boo through my top. And I was forbidden to go into public pools or steam rooms (not that I was itching to do either with two feet of tether hanging out of my chest).
I'm pleased to announce that as of Wednesday, I'm wireless; I no longer need the connection. If a nurse needs blood, she'll have to get it the old-fashioned way - through a vein in my arm. I have no more dangling cords. I won't need daily flushes with Heperan or weekly bandage changes. My clothing choices will expand, and, YES, I will be able to return to the Kabuki Springs and Spa on my next trip to San Francisco (scheduled 2-23).
Paula once brought up the subject of what to do with an old Hickman. I believe she proposed creating a Christmas ornament or running over it repeatedly with my Prius.
The extracted Hickman catheter: The red mark is actually scar tissue. The length of cord below that mark (to the right) was concealed in my chest; the cord and hardware above was in plain view.
I have a few other ideas for recycling the Catheter:
I'm not quite ready to trash the contraption just yet. Who knows - it may end up being a prop for The Big C, Little C one day.
"Actually, no," I would explain while yanking out the cord attached to my arm (when I had a PICC line) or from my chest (after the Hickman insertion in July). I rarely felt the jab of a needle for a blood draw or the poke of an IV line insertion. Nurses simply had to hook up to the lumens at the end of my leash for a direct link to my vena cava.
Blood draws, chemo, hydration, medication, blood and platelet transfusions all came through my catheter. I even received my life-saving stem cells through the line.
But the ultimate patient accessory turned into my least favorite fashion accessory. I was reluctant to flaunt my PICC line in public and wore 3/4 length sleeves on the hottest summer days. After doctors swapped the PICC for the Hickman, I worried constantly that the hardware was playing peek-a-boo through my top. And I was forbidden to go into public pools or steam rooms (not that I was itching to do either with two feet of tether hanging out of my chest).
Here I am just minutes before the removal of my Hickman. Got chemo?
I'm pleased to announce that as of Wednesday, I'm wireless; I no longer need the connection. If a nurse needs blood, she'll have to get it the old-fashioned way - through a vein in my arm. I have no more dangling cords. I won't need daily flushes with Heperan or weekly bandage changes. My clothing choices will expand, and, YES, I will be able to return to the Kabuki Springs and Spa on my next trip to San Francisco (scheduled 2-23).
Paula once brought up the subject of what to do with an old Hickman. I believe she proposed creating a Christmas ornament or running over it repeatedly with my Prius.
I have a few other ideas for recycling the Catheter:
- Entertain Tiger and Heather with a new cat toy.
- Paint it pink and create a commemorative bracelet.
- Look for a pre-tween with a Malibu Barbie convertible and offer to make a gas pumping station.
- Save it for a Fourth of July salute to the red, white and blue.
Suspicious at first, Tiger takes the bait, but soon grows bored.
I'm not quite ready to trash the contraption just yet. Who knows - it may end up being a prop for The Big C, Little C one day.
Breast Cancer patients may benefit from picking own breast surgeon
Women with breast cancer who are involved in the process of selecting their surgeon are more likely to be treated by more experienced surgeons and in hospitals with established cancer programs, according to a study published in the Journal of Clinical Oncology.
Surgeon and hospital characteristics can influence the outcomes of cancer treatments, the authors explain, but little is known about the factors that influence how referrals are made.
Dr. Steven J. Katz from the University of Michigan, Ann Arbor, and colleagues used survey data from women recently diagnosed with breast cancer and their attending surgeons to determine how surgeons are selected, and if there is any association between the referral process and characteristics of the surgeon and hospital.
Most women were referred to their surgeon by another doctor or by their health plan. They chose their surgeon for a number of reasons -- the surgeon's reputation, the institution's reputation, the recommendation of family or friends, or convenience of the location.
The investigators found that 54.3 percent of women were referred and did not select their surgeon; 21.9 percent were referred, but were also involved in selecting their surgeon; 20.3 percent selected their surgeon and were not referred by a provider or plan; and the rest of the patients had a prior relationship with their surgeon.
Women who selected their surgeon by reputation were twice as likely to have a surgeon who performed many procedures (high-volume surgeon) and to be treated at a cancer center designated by the National Cancer Institute or a program approved by the American College of Surgeons, the team reports.
Patients referred by another doctor or health plan were less likely to be treated by a high-volume surgeon or in hospitals with approved cancer programs, the researchers note.
Previous studies have shown that surgical patients often have better outcomes if they are treated by highly experienced surgeons and at hospitals that perform many similar procedures each year.
More research is needed to investigate the implications of the different referral patterns in this study, Katz and colleagues point out. "In the meantime, women with breast cancer should be aware that provider-based referral might not connect them with the most experienced surgeons or the most comprehensive practice setting in their community."
"Patients might consider a second opinion," the researchers suggest, "especially if they are advised to undergo a particular procedure without a full discussion of treatment options or a clear medical rationale for the recommendation."
SOURCE: Journal of Clinical Oncology; breastcancer.org
******
Surgeon and hospital characteristics can influence the outcomes of cancer treatments, the authors explain, but little is known about the factors that influence how referrals are made.
Dr. Steven J. Katz from the University of Michigan, Ann Arbor, and colleagues used survey data from women recently diagnosed with breast cancer and their attending surgeons to determine how surgeons are selected, and if there is any association between the referral process and characteristics of the surgeon and hospital.
Most women were referred to their surgeon by another doctor or by their health plan. They chose their surgeon for a number of reasons -- the surgeon's reputation, the institution's reputation, the recommendation of family or friends, or convenience of the location.
The investigators found that 54.3 percent of women were referred and did not select their surgeon; 21.9 percent were referred, but were also involved in selecting their surgeon; 20.3 percent selected their surgeon and were not referred by a provider or plan; and the rest of the patients had a prior relationship with their surgeon.
Women who selected their surgeon by reputation were twice as likely to have a surgeon who performed many procedures (high-volume surgeon) and to be treated at a cancer center designated by the National Cancer Institute or a program approved by the American College of Surgeons, the team reports.
Patients referred by another doctor or health plan were less likely to be treated by a high-volume surgeon or in hospitals with approved cancer programs, the researchers note.
Previous studies have shown that surgical patients often have better outcomes if they are treated by highly experienced surgeons and at hospitals that perform many similar procedures each year.
More research is needed to investigate the implications of the different referral patterns in this study, Katz and colleagues point out. "In the meantime, women with breast cancer should be aware that provider-based referral might not connect them with the most experienced surgeons or the most comprehensive practice setting in their community."
"Patients might consider a second opinion," the researchers suggest, "especially if they are advised to undergo a particular procedure without a full discussion of treatment options or a clear medical rationale for the recommendation."
SOURCE: Journal of Clinical Oncology; breastcancer.org
******
to warmer climes
I took this picture of the front of my house yesterday morning. We have had another dump of snow since.The shot below, of my 55lb dog sitting on my front walk, gives you an idea of the height of the snowbanks.
It's -21 Celsius (-6 Fahrenheit) today with the windchill. In other words, it's bloody cold. I am off to Florida with my four year old tomorrow. We need to leave for the airport at 4:30am.
We are flying via Cleveland and it will take us forever to get there.
I don't care. It's going up to 24 Celsius (75 Fahrenheit) in Sarasota tomorrow. By this time tomorrow, I will hopefully have dipped my toes in the ocean.
And the only white powdery stuff around will be the sand on the beach.
I'll be back online on February 25th.
I also have a short post up at Mommybloggers.
A very stinky Valentine's Day
As I've mentioned before, WCK and I are huge fans of local children's performer Mr. Stinky Feet. WCK received her first Mr. Stinky Feet CD from Santa at Christmas, and I was very excited about it. Finally, something new and interesting to listen to in the car. We'd spent about a year listening to the same three Sesame Street CDs and the Wizard of Oz soundtrack. You know that when I'M getting tired of the Wizard of Oz soundtrack, it's been going on too long.
At first, it was great. The songs were upbeat and funny. WCK loved it. Mr. Stinky Feet became the only thing she'd listen to in the car.
By New Year's, Mr. Stinky Feet had invaded my brain. It doesn't help that most Mr. Stinky Feet songs tend to be incredibly repetitive and set up residence in one's brain very easily. There is always a Mr. Stinky Feet song going on in the background of my mind, night and day, no matter what I am doing. Even as I type this, my mind is quietly going:
What do you want for lunch?
PEANUT BUTTER!
What do you want for lunch?
PEANUT BUTTER!
What do you want for lunch?
PEANUT BUTTER!
And jelly -- oooh, oooh!
And jelly -- oooh, oooh!
And jelly -- oooh, oooh, oooooooh!
Or ...
Goin' on a road trip
Goin on a road trip
Not a fancy boat trip
Goin' on a road triiii-hip
Goin' on a road trip
Goin on a road trip
Oh, won't you please come along?
I've just sort of accepted it. There's not a lot I can do, except ... buy a new Mr. Stinky Feet CD, so I have a bigger list of songs for my brain to choose from. I gave WCK the new CD yesterday for Valentine's Day, but really it was a little gift to myself. The new CD has "Red Wagon", and -- I'm not exaggerating -- this song TOTALLY, TOTALLY ROCKS, people.
Maybe I need professional help. I'd think it over, but my brain is too busy going:
What color is your mini-van?
What color? What color?
What color is your mini-van?
What color? What color?
At first, it was great. The songs were upbeat and funny. WCK loved it. Mr. Stinky Feet became the only thing she'd listen to in the car.
By New Year's, Mr. Stinky Feet had invaded my brain. It doesn't help that most Mr. Stinky Feet songs tend to be incredibly repetitive and set up residence in one's brain very easily. There is always a Mr. Stinky Feet song going on in the background of my mind, night and day, no matter what I am doing. Even as I type this, my mind is quietly going:
What do you want for lunch?
PEANUT BUTTER!
What do you want for lunch?
PEANUT BUTTER!
What do you want for lunch?
PEANUT BUTTER!
And jelly -- oooh, oooh!
And jelly -- oooh, oooh!
And jelly -- oooh, oooh, oooooooh!
Or ...
Goin' on a road trip
Goin on a road trip
Not a fancy boat trip
Goin' on a road triiii-hip
Goin' on a road trip
Goin on a road trip
Oh, won't you please come along?
I've just sort of accepted it. There's not a lot I can do, except ... buy a new Mr. Stinky Feet CD, so I have a bigger list of songs for my brain to choose from. I gave WCK the new CD yesterday for Valentine's Day, but really it was a little gift to myself. The new CD has "Red Wagon", and -- I'm not exaggerating -- this song TOTALLY, TOTALLY ROCKS, people.
Maybe I need professional help. I'd think it over, but my brain is too busy going:
What color is your mini-van?
What color? What color?
What color is your mini-van?
What color? What color?
Lung Cancer on YouTube & the Lung Cancer Alliance
The following video was downloaded from the Lung Cancer Alliance website. There are also 5 more PSA (public service announcements) on the site or, you can find them on YouTube (use lung cancer as your search query word) http://youtube.com/ or you can just use this link http://youtube.com/results?search_query=lung+cancer&search_type=/
http://www.lungcanceralliance.org/
http://www.lungcanceralliance.org/
More videos from the Lung Cancer Alliance website.
Thursday, February 14, 2008
bloodbath (not for the squeamish)
I had a CT scan yesterday.
Since my life as a cancer patient began, I have had many, many tests and medical appointments. And I have had my share of bizarre experiences.
But yesterday I experienced something new.
I was very pleased that the nurse managed to get the IV needle into a vein on the first try (I had been really dreading that part, after the trauma of last time), albeit in the side of my wrist, right by the bone.
I barely had time to register my relief, though, before I felt a warm liquid on my hand and looked over to see a jet of blood spurting from my wrist onto my hand and the floor.
"I dropped the locking clip!" exclaimed the nurse. "Could you grab me a new one, please?"
What followed was more spurting and a great deal of confused fumbling. The nurse kept thanking the co-worker who was ineptly trying to help (it was only later, when I was told that he was a doctor that I understood that the man probably didn't have the remotest idea what a locking clip was, where to find one or what to do with it when he did).
Eventually (it felt like a long time but was likely only a minute or two. A lot of blood can spurt out of a vein in a very short period of time), the locking clip (which is really a stopper-thingie) was popped on, the nurse cleaned me up and mopped up the floor, all the while apologizing profusely.
"Sorry for the blood-letting," she said.
The rest of the test proceeded pretty uneventfully.
I'll have the results on the 27th. I have no reason to expect anything but good news (the last two CT scans in June and November showed no sign of cancer at all) but I will hate the waiting, anyway.
The test was very early yesterday morning. My spouse was still home when I returned.
"You're a little pale," he said.
Go figure.
Since my life as a cancer patient began, I have had many, many tests and medical appointments. And I have had my share of bizarre experiences.
But yesterday I experienced something new.
I was very pleased that the nurse managed to get the IV needle into a vein on the first try (I had been really dreading that part, after the trauma of last time), albeit in the side of my wrist, right by the bone.
I barely had time to register my relief, though, before I felt a warm liquid on my hand and looked over to see a jet of blood spurting from my wrist onto my hand and the floor.
"I dropped the locking clip!" exclaimed the nurse. "Could you grab me a new one, please?"
What followed was more spurting and a great deal of confused fumbling. The nurse kept thanking the co-worker who was ineptly trying to help (it was only later, when I was told that he was a doctor that I understood that the man probably didn't have the remotest idea what a locking clip was, where to find one or what to do with it when he did).
Eventually (it felt like a long time but was likely only a minute or two. A lot of blood can spurt out of a vein in a very short period of time), the locking clip (which is really a stopper-thingie) was popped on, the nurse cleaned me up and mopped up the floor, all the while apologizing profusely.
"Sorry for the blood-letting," she said.
The rest of the test proceeded pretty uneventfully.
I'll have the results on the 27th. I have no reason to expect anything but good news (the last two CT scans in June and November showed no sign of cancer at all) but I will hate the waiting, anyway.
The test was very early yesterday morning. My spouse was still home when I returned.
"You're a little pale," he said.
Go figure.
I'm a Loser, Baby
I need to fess up: life isn't all that great with radiation. Well, anyway, it seems to be getting worse.
I was told by various health care professionals that I could look forward to life not sucking as much with radiation, that it's much better than chemo. Sure, I might get a little tired and some skin irritations, but compared to chemo, it's not that bad.
I'm finding out that that's a load of crap. I'm pretty fucking tired, and because I had all these expectations that it would be better, I'm also getting kinda depressed. I'm frustrated, I'm pissy, I'm sick of it. So yeah, I feel like ass. And I feel like I failed.
The gentle side of me says, "You didn't fail. You're still fighting." But the loud side of me says, "Suck it up. It isn't as bad as chemo, stop whining. Don't be a loser. Drink more coffee and get to work." So I feel stuck and sick to my stomach that I'm so exhausted and don't want to do anything but lie in bed.
My parents were scheduled to come stay with us on March 19th, but things have gotten so bad that Henry asked me if maybe they should come earlier. Thankfully, they do want to be here as much as I need them to be here, so they are coming next Wednesday. I am thankful for their support, but still, I feel like I've failed.
Surgery has been scheduled for April 15th. While I joke about and make light of getting new boobies, I'll also admit that I'm freaked out. I mean, sure, my boobs aren't the greatest pair of jugs to have graced the planet, but still, they have been a source of pleasure for me (lovely sensory nerves) and a source of food for my kids. Aesthetically, I will have decent boobs (I hope), but what will I feel? And it's going to be weird to be nippleless for six months, until I get new ones tattooed on. Weird, weird, weird.
I'm back to where I started: cancer fucking sucks.
I was told by various health care professionals that I could look forward to life not sucking as much with radiation, that it's much better than chemo. Sure, I might get a little tired and some skin irritations, but compared to chemo, it's not that bad.
I'm finding out that that's a load of crap. I'm pretty fucking tired, and because I had all these expectations that it would be better, I'm also getting kinda depressed. I'm frustrated, I'm pissy, I'm sick of it. So yeah, I feel like ass. And I feel like I failed.
The gentle side of me says, "You didn't fail. You're still fighting." But the loud side of me says, "Suck it up. It isn't as bad as chemo, stop whining. Don't be a loser. Drink more coffee and get to work." So I feel stuck and sick to my stomach that I'm so exhausted and don't want to do anything but lie in bed.
My parents were scheduled to come stay with us on March 19th, but things have gotten so bad that Henry asked me if maybe they should come earlier. Thankfully, they do want to be here as much as I need them to be here, so they are coming next Wednesday. I am thankful for their support, but still, I feel like I've failed.
Surgery has been scheduled for April 15th. While I joke about and make light of getting new boobies, I'll also admit that I'm freaked out. I mean, sure, my boobs aren't the greatest pair of jugs to have graced the planet, but still, they have been a source of pleasure for me (lovely sensory nerves) and a source of food for my kids. Aesthetically, I will have decent boobs (I hope), but what will I feel? And it's going to be weird to be nippleless for six months, until I get new ones tattooed on. Weird, weird, weird.
I'm back to where I started: cancer fucking sucks.
Wednesday, February 13, 2008
Rebuilding in More Ways Than One
I was very busy before I got cancer: running here, rushing there, attempting to cram 26 hours into a 24 hour day.
And then, almost overnight, my life contracted. "Quit your job," my doctors advised me. At the same time, I scaled way back on my volunteer activities. For the next ten months, treatment and recovery filled a big chunk of my calendar. I lived a full life, but, like most patients, I looked forward to that magical time when I would "have my old life back."
A funny thing happened on the way to remission. I realized that I didn't want my life back - or at least not the same one. Like the body I'm rebuilding this year, I have the opportunity to rebuild my life - one filled with more "want tos" than "have tos."
I'm finally doing the things I talked about for years. That includes taking Terrie Silverman's Creative Rites class, in preparation for that eventual Big C, Little C one-woman show. I'm hard at work on two book proposals. I'm also pitching freelance article ideas to magazines and am back to working a few hours a week as a marketing and PR consultant.
I've signed up for the City of Hope's Speaker's Bureau, have agreed to help with the Asians for Miracle Marrow Matches fall benefit and will return to the board of the Pasadena YWCA.
I feel passionate about all of these projects, both work-related and volunteer-related. And I still have time to exercise daily, garden, spend time with friends and family and even take the occasional nap. I'm a lucky girl.
Now, I know what you're thinking: "It's going to take no time at all before that girl is back to the same old running here, rushing there, pre-cancer life." I hate to admit it, but you're probably right. I'll have to resist the urge to take on too much, too fast. And I'll need to keep the "quality control" switch on to make sure I'm not bringing any toxic projects or activities back into my life.
I want both my "life gain" and my weight gain to be slow and healthy (no quick packing on pounds from potato chip and french onion dip binges). And, most important, I want to be able to know when to stop.
And then, almost overnight, my life contracted. "Quit your job," my doctors advised me. At the same time, I scaled way back on my volunteer activities. For the next ten months, treatment and recovery filled a big chunk of my calendar. I lived a full life, but, like most patients, I looked forward to that magical time when I would "have my old life back."
A funny thing happened on the way to remission. I realized that I didn't want my life back - or at least not the same one. Like the body I'm rebuilding this year, I have the opportunity to rebuild my life - one filled with more "want tos" than "have tos."
I'm finally doing the things I talked about for years. That includes taking Terrie Silverman's Creative Rites class, in preparation for that eventual Big C, Little C one-woman show. I'm hard at work on two book proposals. I'm also pitching freelance article ideas to magazines and am back to working a few hours a week as a marketing and PR consultant.
I've signed up for the City of Hope's Speaker's Bureau, have agreed to help with the Asians for Miracle Marrow Matches fall benefit and will return to the board of the Pasadena YWCA.
I feel passionate about all of these projects, both work-related and volunteer-related. And I still have time to exercise daily, garden, spend time with friends and family and even take the occasional nap. I'm a lucky girl.
Now, I know what you're thinking: "It's going to take no time at all before that girl is back to the same old running here, rushing there, pre-cancer life." I hate to admit it, but you're probably right. I'll have to resist the urge to take on too much, too fast. And I'll need to keep the "quality control" switch on to make sure I'm not bringing any toxic projects or activities back into my life.
I want both my "life gain" and my weight gain to be slow and healthy (no quick packing on pounds from potato chip and french onion dip binges). And, most important, I want to be able to know when to stop.
Tuesday, February 12, 2008
Donor Family Letter
I finally composed an appropriate set of words to introduce myself, say thank-you, and give my condolences to my donor’s family for their loss. I hope to build a relationship with the family so they will see their loved one lives within me.
Day 2 (Mr. Mom/ Mr. Dad)
Day two was uneventful, Ravyn has messed her hair up playing all day; so I am either going to attempt to do it the best I can or pull out my clippers ..... and tell my wife she got a hold of some chewing gum.......
Update, I did her hair it looks okay you can tell my wife did not do it, she can't go all week with my handy work so Aunt Pat is going to help me with their hair this week.
3 more days until my better half returns home
Update, I did her hair it looks okay you can tell my wife did not do it, she can't go all week with my handy work so Aunt Pat is going to help me with their hair this week.
3 more days until my better half returns home
Angels
I was diagnosed with signet ring cell appendiceal cancer on March 29, 2001. I had my cytoreduction surgery on May 16th, 2001. I finished chemotherapy on January 22, 2002. After I left the oncology office on my final day of chemo, I took myself out to lunch at a nice restaurant to celebrate the end of cancer treatment.
People congratulated me when I crossed the finish line of cancer treatment. They, and myself, thought finishing chemo meant that my cancer journey was over. We all naively thought I would go back to my "normal" life. I truly wanted to leave cancer and the cancer world behind me, to move on.
Then I discovered, as we all do after a cancer diagnosis, that it is never really over. We can't go back to normal as we used to know it. We are forever changed. Our lives, our futures, our perspectives and our relationships are not the same as before cancer.
When I realized that, I decided to re-enter the cancer community as a survivor in what I hoped would be a helpful way. I didn't want my life-altering cancer experience to be for nothing. I needed it to serve a purpose, I needed to give it meaning. Since it would never really be over, I wanted to put it to good use.
The great lesson I learned was that when I communicate with or am in the presence of other cancer survivors, I truly feel at home. I am with other people who share my profound experience, people who look at the world the way I do now. Sometimes it's hard to fit into our old "normal" world, but we are truly at home when we are with other cancer patients and survivors. We share a lot, we understand each other, we belong. My staying in the cancer community in the end was the best thing I could have done for myself and my own recovery. I've met over 300 appendiceal cancer survivors and have even been able to "matchmake" and connect a few appendix cancer survivors with newly diagnosed patients in their area, it's been great.
I had a great conversation tonight with a man I hope meet, Jonny Imerman, a cancer survivor. He was diagnosed with testicular cancer in his mid 20s. He understands the magic of the cancer community connection and has founded an organization, Imerman's Angels. His organization exists to introduce survivors of a particular cancer to those newly diagnosed with the same cancer, to facilitate one-one-one cancer support within the cancer community. This is a link to Jonny's web site:
Imerman Angels
If any of you would like to become a part of his group of patients needing support or survivors willing to give support to someone else, please think about contacting him. We need each other!
I've also just added links to other survivor's web sites to my blog. If you have a site and would like to be listed here, email me and I'll add you to my survivor list...and welcome Graham and Rosie!
People congratulated me when I crossed the finish line of cancer treatment. They, and myself, thought finishing chemo meant that my cancer journey was over. We all naively thought I would go back to my "normal" life. I truly wanted to leave cancer and the cancer world behind me, to move on.
Then I discovered, as we all do after a cancer diagnosis, that it is never really over. We can't go back to normal as we used to know it. We are forever changed. Our lives, our futures, our perspectives and our relationships are not the same as before cancer.
When I realized that, I decided to re-enter the cancer community as a survivor in what I hoped would be a helpful way. I didn't want my life-altering cancer experience to be for nothing. I needed it to serve a purpose, I needed to give it meaning. Since it would never really be over, I wanted to put it to good use.
The great lesson I learned was that when I communicate with or am in the presence of other cancer survivors, I truly feel at home. I am with other people who share my profound experience, people who look at the world the way I do now. Sometimes it's hard to fit into our old "normal" world, but we are truly at home when we are with other cancer patients and survivors. We share a lot, we understand each other, we belong. My staying in the cancer community in the end was the best thing I could have done for myself and my own recovery. I've met over 300 appendiceal cancer survivors and have even been able to "matchmake" and connect a few appendix cancer survivors with newly diagnosed patients in their area, it's been great.
I had a great conversation tonight with a man I hope meet, Jonny Imerman, a cancer survivor. He was diagnosed with testicular cancer in his mid 20s. He understands the magic of the cancer community connection and has founded an organization, Imerman's Angels. His organization exists to introduce survivors of a particular cancer to those newly diagnosed with the same cancer, to facilitate one-one-one cancer support within the cancer community. This is a link to Jonny's web site:
Imerman Angels
If any of you would like to become a part of his group of patients needing support or survivors willing to give support to someone else, please think about contacting him. We need each other!
I've also just added links to other survivor's web sites to my blog. If you have a site and would like to be listed here, email me and I'll add you to my survivor list...and welcome Graham and Rosie!
reading deprived
I am still doing the Artist's Way.
Last week, I was supposed to do something called "reading deprivation."
I felt that it was asking way too much of myself to forego reading during a chemo week.
This week, I am taking a crack at it. I am allowed to answer emails, read to my son and read the comments on my blog (and, of course, to re-read my own writing).
I've been on starvation diets that are easier than this.
And cheated less.
Last week, I was supposed to do something called "reading deprivation."
I felt that it was asking way too much of myself to forego reading during a chemo week.
This week, I am taking a crack at it. I am allowed to answer emails, read to my son and read the comments on my blog (and, of course, to re-read my own writing).
I've been on starvation diets that are easier than this.
And cheated less.
Monday, February 11, 2008
Visit with the TCEQ
Got to visit with the TCEQ family today, and talk openly about Lung Cancer and Organ donation. I hope that I was a little entertaining. I also took the opportunity to thank them for the support they have been and continue to be to my wife and the entire family. I was also there to help Jan as she prepares to run her first Ultra marathon (2/23/08 The Cowtown) she is raising money to donate to the family, while using my story / my family’s story as motivation. I hope our story helps to cover the long tough race ahead of her.
In closing Jan will be fine the first ultra is always the toughest (like I have run one, maybe in the future once I can feel my feet)
Good Luck Jan and the rest of the Fort Worth Runners Club members
http://www.fwrunners.org/
Thanks again TCEQ for allowing to ramble on with some good information and some information that was TMI
This is also Day1 of living like a bachelor since my wife is out of town on business, the girls and I have made it so far, their hair still looks good, they have had healthy meals today, all is peaceful so far.
In closing Jan will be fine the first ultra is always the toughest (like I have run one, maybe in the future once I can feel my feet)
Good Luck Jan and the rest of the Fort Worth Runners Club members
http://www.fwrunners.org/
Thanks again TCEQ for allowing to ramble on with some good information and some information that was TMI
This is also Day1 of living like a bachelor since my wife is out of town on business, the girls and I have made it so far, their hair still looks good, they have had healthy meals today, all is peaceful so far.
Medication List
Some of the meds I take or have taken or you can expect to take post-transplant.
Medication
Prograf (Tacrolimus)
Cellcept (Mycophenolate)
Prednisone
Lasik (Furosemide)
Potassium (Slow-K OR K DUR)
Magnesium (Magnesium plus protein)
Oscal D (Calcium + Vitamin D)
Mycelex (Clotrimazole)
Bactrim (Septra); (SMZ-TMP); (Cotrimoxazole)
Nexium
Colace (Docusate Sodium)
Sporanox (Itraconazole)
Folic Acid
Valcyte (Valganciclovir)
Iron (Ferrous Sulfate)
Aredia (Pamidronate)
Reglan (Metoclopramide)
Vicodin (Hydrocodone/ Acetaminophen)
Metoprolol (lopressor)
Ambien
Warfin
Ondansetron
Starlix
Lidoderm Patches
Medication
Prograf (Tacrolimus)
Cellcept (Mycophenolate)
Prednisone
Lasik (Furosemide)
Potassium (Slow-K OR K DUR)
Magnesium (Magnesium plus protein)
Oscal D (Calcium + Vitamin D)
Mycelex (Clotrimazole)
Bactrim (Septra); (SMZ-TMP); (Cotrimoxazole)
Nexium
Colace (Docusate Sodium)
Sporanox (Itraconazole)
Folic Acid
Valcyte (Valganciclovir)
Iron (Ferrous Sulfate)
Aredia (Pamidronate)
Reglan (Metoclopramide)
Vicodin (Hydrocodone/ Acetaminophen)
Metoprolol (lopressor)
Ambien
Warfin
Ondansetron
Starlix
Lidoderm Patches
pavlov revisited
One morning, as I was making school lunches, I dropped a bunch of cheese on my dog's head (I had been slicing it onto sandwiches and had turned to talk to my older son. Multi-tasking before sufficient caffeine intake has never been my strong suit).
Now, whenever I am making lunches, the dog dances with excitement, his eyes sparkling with hope and joyful anticipation.
I want to live my life like that. Life is good. And you never know when cheese might fall from the sky.
Now, whenever I am making lunches, the dog dances with excitement, his eyes sparkling with hope and joyful anticipation.
I want to live my life like that. Life is good. And you never know when cheese might fall from the sky.
Friday, February 8, 2008
Charity Event to Break The Silence of Ovarian Cancer
Back In Motion ~ A Night Of Golden Memories"
CHARITY EVENT TO BREAK THE SILENCE OF OVARIAN CANCER
A fun-filled evening of networking, music, fine food, prizes and nostalgia will take place on April 1, 2008 from 6:00 P.M. – 10 P.M. at the Inn at New Hyde Park. The fundraising event is sponsored by Pro-fusion, home of the Long Island Breakfast Club, a career advocacy organization for mature professionals.
CHARITY EVENT TO BREAK THE SILENCE OF OVARIAN CANCER
A fun-filled evening of networking, music, fine food, prizes and nostalgia will take place on April 1, 2008 from 6:00 P.M. – 10 P.M. at the Inn at New Hyde Park. The fundraising event is sponsored by Pro-fusion, home of the Long Island Breakfast Club, a career advocacy organization for mature professionals.
two finished objects and a felted bag
I have several almost finished knitting projects kicking around the house. Yesterday, and the day before, I bit the bullet and finished two of them.
This is the "Heartbreakingly Cute Baby Kimono" from Mason-Dixon Knitting. For months all it needed was for me to sew the little cords on for the tie.
The lighting is not great in this shot but it really is heart-breakingly cute (how could a new-born sized kimono, not be?). This one's going to the Warm Hands Network.
These socks have been languishing for a few weeks, needing only one toe to be finished. The photo really does not do justice to the Fleece Artist yarn. The socks are REALLY thick but very comfortable. I just haven't been brave enough to check how comfortable they'll be with shoes on.
The bag below is from a free pattern from Black Sheep Bags. It's called a Booga Bag and I stumbled on it when I was yearning for a felted bag (seriously, I was. They're strong and light. And I think they're cool).
Since I first stumbled on the pattern, it's become a bit of a knitting craze. If you feel like it, go to Flickr and do a search for 'Booga' you get 2,563 results and the overwhelming majority are pictures of this bag.
This is what it looked like before I felted it:
And this is what it looks like, after being machine washed in hot water and rinsed in cold:
I had been warned that this is not a big bag, but the thing is tiny. It looks like I'll be able to fit my wallet, keys (if I can find them), a lipstick and maybe a tiny notebook and a pen.
Maybe I shouldn't have run the bag through the whole wash cycle. Thoughts?
I like how it looks, though and the way the colours blended together. And it will be a nice light purse.
I'll post more pics once I make the holes for the straps and add them on.
You have no idea how much clutter I had to move out of the way to take EACH of these pictures.
This is the "Heartbreakingly Cute Baby Kimono" from Mason-Dixon Knitting. For months all it needed was for me to sew the little cords on for the tie. The lighting is not great in this shot but it really is heart-breakingly cute (how could a new-born sized kimono, not be?). This one's going to the Warm Hands Network.
These socks have been languishing for a few weeks, needing only one toe to be finished. The photo really does not do justice to the Fleece Artist yarn. The socks are REALLY thick but very comfortable. I just haven't been brave enough to check how comfortable they'll be with shoes on.The bag below is from a free pattern from Black Sheep Bags. It's called a Booga Bag and I stumbled on it when I was yearning for a felted bag (seriously, I was. They're strong and light. And I think they're cool).
Since I first stumbled on the pattern, it's become a bit of a knitting craze. If you feel like it, go to Flickr and do a search for 'Booga' you get 2,563 results and the overwhelming majority are pictures of this bag.
This is what it looked like before I felted it:
And this is what it looks like, after being machine washed in hot water and rinsed in cold:
I had been warned that this is not a big bag, but the thing is tiny. It looks like I'll be able to fit my wallet, keys (if I can find them), a lipstick and maybe a tiny notebook and a pen.Maybe I shouldn't have run the bag through the whole wash cycle. Thoughts?
I like how it looks, though and the way the colours blended together. And it will be a nice light purse.
I'll post more pics once I make the holes for the straps and add them on.
You have no idea how much clutter I had to move out of the way to take EACH of these pictures.
Thursday, February 7, 2008
About the Bitches
I thought Susan Sontag showed everyone that our personality defects don't cause our cancer. Now we have the lovely bestselling Skinny Bitches telling us the opposite, and I would bet that more people have heard of them than the late Sontag. The authors of Skinny Bitch: A no-nonsense, tough-love guide for savvy girls who want to stop eating crap and start looking fabulous are counseling those savvy girls to go vegan and organic. Nothing wrong with that, except some of their science seems a bit loose. And then we get to page 189, where the Bitches praise, quote and paraphrase case studies from Dr. Carolyn Myss' book, Anatomy of the Spirit. To wit: "It is no coincidence that Julie was diagnosed with breast and ovarian cancer, reflecting her lack of self-love....'Joanna' was married to a man who had multiple affairs, which she knew about but tried to live with. Not surprisingly, she developed breast cancer." But then she confronted her husband, left the marriage--and recovered! Of course!
The authors do say that they're not saying that "everyone suffering from a disease has brought it upon him or herself." But that it's possible. Thank you so much, Skinny Bitches, for blaming us. You can keep your book and your damned soy beans and soy milk and tofu, which I don't eat any more because they act like weak estrogens.
I can't take this book back to the store because I didn't buy it. A co-worker of L's did. She had a lumpectomy and I guess is trying to clean up her act. We are all trying to. But the Skinny Bitches aren't the ones who should be directing us.
The authors do say that they're not saying that "everyone suffering from a disease has brought it upon him or herself." But that it's possible. Thank you so much, Skinny Bitches, for blaming us. You can keep your book and your damned soy beans and soy milk and tofu, which I don't eat any more because they act like weak estrogens.
I can't take this book back to the store because I didn't buy it. A co-worker of L's did. She had a lumpectomy and I guess is trying to clean up her act. We are all trying to. But the Skinny Bitches aren't the ones who should be directing us.
Neuro Optomolgist
I can see clearly now, I got the all clear from the Neuro Optomologist as I had to get my eyes checked. One of many things you must keep an eye (no pun intended) on after transplant because of diabetic concerns, cataracts, glaucoma, CMV.....
Next eye check-up will be in 6 months.
Next eye check-up will be in 6 months.
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