When I checked in to Hotel Hope, I was like a good Boy Scout - hoping for the best but preparing for the worst.
Given my past history of slacker blood rebounding and near disastrous stem cell harvesting, it was realistic for Dr. Forman and me to expect a four to five week stay at Hotel Hope.
So how do you explain the fact that I'm home after just three weeks? I know that there are hundreds of people praying and thinking good thoughts for me - many are dear friends, others are friends of friends, but many more are complete strangers.
I'm humbled by and grateful to all of you.
Friday, November 30, 2007
Home Sleep Home
No, that's not a typo. The sweetest thing about being home again is the sleep.
I realize now that my need for daytime ZZZs had little to do with the killer chemo or low blood counts. I was feeling the cumulative effects of three weeks of sleep deprivation.
During week one, staff monitored my vital signs every 30 minutes on at least three nights. The other nights were interrupted with heavy-duty nausea and/or throwing up until I received sleep-inducing doses of Benadryl or Atavan. Sleep often came in 20 minute increments, if it came at all.
During week two, my physical health improved significantly. I no longer needed continuous monitoring of vitals, and the worst of the nausea had passed. But run-of-the-mill insomnia set in. I couldn't turn off my racing brain after my head hit the pillow. I fixated on family issues, such as "Can an 18-year-old daughter die from a steady diet of Spaghetti-Os?"
From there, I'd move on to the "I wonder" fixation category. "I wonder when 20th Century Fox became just Fox? (Or did it?)" "I wonder if they thought about becoming 21st Century Fox?" "I wonder if the name 2oth Century Fox had a modern ring when it was first conceived." Before I knew it, the nurse was in for my 4:00 am blood draw, and I realized I hadn't slept a wink. (These may be interesting questions, but hardly worth losing sleep over.)
By week three, I'd learned how to turn off my racing brain. I fell asleep by 11:30 pm and slept peacefully. That is until I received a "bladder call" three to six times a night. Or vital checks twice a night. Or the 4:00 am blood draw. Or a beeping IV pole at least twice a night. My sleep was interrupted anywhere from eight to 12 times a night.
Rita, a fellow hematology patient in my exercise class, told us that her husband came to spend three nights with her. After the first night of continuous interruptions, he decided to sleep in his truck on nights two and three. I'm not surprised that he got a better night's sleep in a truck than a hospital room.
Now I'm enjoying the benefits of home, sleep home. An hour after returning from Hotel Hope, I settled in for a one-hour nap from 5:00 to 6:00 pm. I fell asleep by 11:00 pm and, still programmed for the 4:00 am blood draw, woke up at 3:45 am. I answered a bladder call and fell immediately back to sleep again until 7:30 this morning.
Sweet, deep, uninterrupted sleep. There's nothing like it.
I realize now that my need for daytime ZZZs had little to do with the killer chemo or low blood counts. I was feeling the cumulative effects of three weeks of sleep deprivation.
During week one, staff monitored my vital signs every 30 minutes on at least three nights. The other nights were interrupted with heavy-duty nausea and/or throwing up until I received sleep-inducing doses of Benadryl or Atavan. Sleep often came in 20 minute increments, if it came at all.
During week two, my physical health improved significantly. I no longer needed continuous monitoring of vitals, and the worst of the nausea had passed. But run-of-the-mill insomnia set in. I couldn't turn off my racing brain after my head hit the pillow. I fixated on family issues, such as "Can an 18-year-old daughter die from a steady diet of Spaghetti-Os?"
From there, I'd move on to the "I wonder" fixation category. "I wonder when 20th Century Fox became just Fox? (Or did it?)" "I wonder if they thought about becoming 21st Century Fox?" "I wonder if the name 2oth Century Fox had a modern ring when it was first conceived." Before I knew it, the nurse was in for my 4:00 am blood draw, and I realized I hadn't slept a wink. (These may be interesting questions, but hardly worth losing sleep over.)
By week three, I'd learned how to turn off my racing brain. I fell asleep by 11:30 pm and slept peacefully. That is until I received a "bladder call" three to six times a night. Or vital checks twice a night. Or the 4:00 am blood draw. Or a beeping IV pole at least twice a night. My sleep was interrupted anywhere from eight to 12 times a night.
Rita, a fellow hematology patient in my exercise class, told us that her husband came to spend three nights with her. After the first night of continuous interruptions, he decided to sleep in his truck on nights two and three. I'm not surprised that he got a better night's sleep in a truck than a hospital room.
Now I'm enjoying the benefits of home, sleep home. An hour after returning from Hotel Hope, I settled in for a one-hour nap from 5:00 to 6:00 pm. I fell asleep by 11:00 pm and, still programmed for the 4:00 am blood draw, woke up at 3:45 am. I answered a bladder call and fell immediately back to sleep again until 7:30 this morning.
Sweet, deep, uninterrupted sleep. There's nothing like it.
Thursday, November 29, 2007
Let Sleeping Dogs Lie
With my newly reinfused stem cells, I have the immune system of a baby. To protect that infant immune system, my nurse practitioner, Barbara, went over my discharge instructions - the lists of daily dos and dont's. I plan to follow the instructions to a Tee because I don't want a repeat visit to Hotel Hope.
I do, however, have trouble with one of the guidelines:
I'd love to hear from other pet-loving post-transplanters, both auto and allo. How have you handled the "close physical contact" clause? And how do you kick out a dog from its "rightful" place at the foot of the bed?
If you don't feel comfortable leaving a comment, please email me directly at susancarrier@sbcglobal.net.
Thanks in advance from me and the Carrier family pets for any advice you can provide.
UPDATE: I just spoke with Dr. Forman, and he said that this is not an "absolute" since my white counts are high. I just have to make sure that I'm vigilant about washing my hands and that I avoid "kissy kissy" with Betty. I'd still love to hear other pet stories.
I do, however, have trouble with one of the guidelines:
"If pets are allowed to stay with you, you should avoid close physical contact with them and they should not sleep in the same room with you."First of all, what's the point of having pets if you have to "avoid close physical contact." Second, our dog, Betty, has slept at the foot of our bed for 11 years. Our cat Heather likes to sleep curled up near my face. (Tiger chooses not to join the family bed.)
I'd love to hear from other pet-loving post-transplanters, both auto and allo. How have you handled the "close physical contact" clause? And how do you kick out a dog from its "rightful" place at the foot of the bed?
If you don't feel comfortable leaving a comment, please email me directly at susancarrier@sbcglobal.net.
Thanks in advance from me and the Carrier family pets for any advice you can provide.
UPDATE: I just spoke with Dr. Forman, and he said that this is not an "absolute" since my white counts are high. I just have to make sure that I'm vigilant about washing my hands and that I avoid "kissy kissy" with Betty. I'd still love to hear other pet stories.
Wednesday, November 28, 2007
Got Platelets?
This is a first. I need platelets again today, but my nurse informed me this morning that there's a shortage and I'll have to wait until the hospital gets a fresh supply. The need is dire, both at City of Hope and at the local Red Cross.
Click here to find how you can spend two hours of time to help relieve the shortage. (And if you can designate the platelets for me, I won't have to worry about this happening in the future.)
City of Hope may not offer the same luxury service offered by UCLA (as described in an earlier comment from Margaret), but you can be assured of the following perks:
Click here to find how you can spend two hours of time to help relieve the shortage. (And if you can designate the platelets for me, I won't have to worry about this happening in the future.)
City of Hope may not offer the same luxury service offered by UCLA (as described in an earlier comment from Margaret), but you can be assured of the following perks:
- A wide selection of savory or sweet snacks and fruit juices
- A warm blanket
- A video screened on your own private TV
- A City of Hope Blood Bowl T-Shirt
- A $5 In N Out git certificate and movie coupon for AMC Theatres OR a pint of ice cream from Baskin Robbins
- The chance to win dinner for two at Outback Steakhouse (before November 30)
- A "get out of housework" (or cooking or any other chore you abhor) free card (It's every bit as good as the "cancer card.")
- My undying gratitude
Elf Yourself
George has long had a secret fantasy about becoming an elf. Thanks to Elf Yourself, his dream has come true.
Click here to watch the Carrier family elves. (This takes a few seconds to download.)
You're not seeing double if you think you see two Smookie elves - one with short hair and glasses and the other with long hair (a wig) and no glasses. I was experimenting with different photos and couldn't figure out how to delete one.
Click here to watch the Carrier family elves. (This takes a few seconds to download.)
You're not seeing double if you think you see two Smookie elves - one with short hair and glasses and the other with long hair (a wig) and no glasses. I was experimenting with different photos and couldn't figure out how to delete one.
Date with Lucifer, Part 6
Chemo today. Had my oncologist check-up yesterday, and she gave me some more drugs for the excruciating joint pain that I get with this chemo. I told her I'd been eating some magic brownies, and she was fine with that. She said that we live in BC, after all. Hey, whatever works. Last time I had chemo, I had an immediate allergic reaction to the Docetaxel drip--I got really hot right away and had chest pains. So they stopped the drip and pumped me full of steroids and Benedryl via IV. Then they started the drip again. So this time, I'll get premedicated with the stuff to prevent the same reaction.
I gather from my nurse and doc that what I experienced with the last chemo is only going to get worse, as the effects are cumulative. But the good news is that after this chemo, I only have 2 more! I should be finished with chemo in the second week of January.
Then comes the radiation. We met with the radiation oncologist on Monday, and it was explained to us that the benefits of radiation are good and proven, that the chances of secondary cancer is less than 1%. So starting at the end of January, I will go in every day for five and a half weeks to get my radiation. I was told that it's like going out in the sun, that I will tan on the radiated area. Folks, I don't tan--I burn, like within ten minutes of being in the sun--with 50 SPF sunscreen. But if I get bad skin irritations, they will, of course, give me yet another prescription.
This morning, before I go in for my chemo this afternoon, I'm going to do the whole home spa thing. Long hot bath, good reading (I'm reading Inventing Victor, which is a collection of short stories by my friend Lisa's friend, Jennifer--and it's great!), sitting in my new massage cushion (Henry bought me a new wonderful massage cushion yesterday at Costco, which has a rolling function, a shiatsu function, and a heat option!). I'm hoping that after chemo, I won't be too wiped out to go to the end of the term Creative Writing party on campus. I haven't seen a lot of my creative writing cohort in a while.
I want to write about all the fun stuff that's been happening in the past two weeks and try to forget all the crappiness (since that will be soon revisited anyway). Lisa and Vicki's visit was a godsend, if only a little too short for my taste! It was so wonderful to hang out with my best friend from home and her mom, and take them to all my favorite restaurants and places in Vancouver. Luckily, the weather wasn't shitty the entire time, as we were blessed with some wonderful sun. I think they really enjoyed it, and I hope they come back soon. When I'm not a lazy ass, I will download some of the pictures and post them.
Then we had two wonderful events for the book I edited that came out of the workshop that I taught back in February and March. The book is called Eating Stories: A Chinese and Aboriginal Potluck. I went on CBC on Friday morning to talk about it, then three of the authors went on CBC on Sunday morning for an interview, and other authors and folks are going to appear on radio, tv, and in print about it. People seem really excited about it! So I celebrated my birthday at our launch on Sunday, with song and cake and flowers (thanks, everyone!). And then we had dinner with Henry's folks and sister and her family (before the launch we went out to brunch with Henry's parents at Cafe Pacifica in the Pan Pacific Hotel). Then Henry and I went to see Beowulf on 3D Imax (which would have totally blown chunks if not for the impressive 3D effects). It was a great day!
Last night, our pals Michael, Anne, Debora, and Lynda brought over a fantastic dinner (sushi from Hiroshi's, noodles that Michael made, and salted cod that Debora made), and frozen soups. We had great conversations, enjoyed the food, and it was just so great to see my pals.
But the best thing that happened in the last few weeks was when we were at our family doctor last week, getting our flu shots. While we were waiting for her to come into the exam room, Chloe grabbed my head and pulled it to her ear and said, "Mama, I can hear the ocean. I can hear whales." Granted, it's like she's saying I'm empty-headed, but it was wonderfully poetic to me.
I gather from my nurse and doc that what I experienced with the last chemo is only going to get worse, as the effects are cumulative. But the good news is that after this chemo, I only have 2 more! I should be finished with chemo in the second week of January.
Then comes the radiation. We met with the radiation oncologist on Monday, and it was explained to us that the benefits of radiation are good and proven, that the chances of secondary cancer is less than 1%. So starting at the end of January, I will go in every day for five and a half weeks to get my radiation. I was told that it's like going out in the sun, that I will tan on the radiated area. Folks, I don't tan--I burn, like within ten minutes of being in the sun--with 50 SPF sunscreen. But if I get bad skin irritations, they will, of course, give me yet another prescription.
This morning, before I go in for my chemo this afternoon, I'm going to do the whole home spa thing. Long hot bath, good reading (I'm reading Inventing Victor, which is a collection of short stories by my friend Lisa's friend, Jennifer--and it's great!), sitting in my new massage cushion (Henry bought me a new wonderful massage cushion yesterday at Costco, which has a rolling function, a shiatsu function, and a heat option!). I'm hoping that after chemo, I won't be too wiped out to go to the end of the term Creative Writing party on campus. I haven't seen a lot of my creative writing cohort in a while.
I want to write about all the fun stuff that's been happening in the past two weeks and try to forget all the crappiness (since that will be soon revisited anyway). Lisa and Vicki's visit was a godsend, if only a little too short for my taste! It was so wonderful to hang out with my best friend from home and her mom, and take them to all my favorite restaurants and places in Vancouver. Luckily, the weather wasn't shitty the entire time, as we were blessed with some wonderful sun. I think they really enjoyed it, and I hope they come back soon. When I'm not a lazy ass, I will download some of the pictures and post them.
Then we had two wonderful events for the book I edited that came out of the workshop that I taught back in February and March. The book is called Eating Stories: A Chinese and Aboriginal Potluck. I went on CBC on Friday morning to talk about it, then three of the authors went on CBC on Sunday morning for an interview, and other authors and folks are going to appear on radio, tv, and in print about it. People seem really excited about it! So I celebrated my birthday at our launch on Sunday, with song and cake and flowers (thanks, everyone!). And then we had dinner with Henry's folks and sister and her family (before the launch we went out to brunch with Henry's parents at Cafe Pacifica in the Pan Pacific Hotel). Then Henry and I went to see Beowulf on 3D Imax (which would have totally blown chunks if not for the impressive 3D effects). It was a great day!
Last night, our pals Michael, Anne, Debora, and Lynda brought over a fantastic dinner (sushi from Hiroshi's, noodles that Michael made, and salted cod that Debora made), and frozen soups. We had great conversations, enjoyed the food, and it was just so great to see my pals.
But the best thing that happened in the last few weeks was when we were at our family doctor last week, getting our flu shots. While we were waiting for her to come into the exam room, Chloe grabbed my head and pulled it to her ear and said, "Mama, I can hear the ocean. I can hear whales." Granted, it's like she's saying I'm empty-headed, but it was wonderfully poetic to me.
Special Die(t)
I could have died when I got the word from my dietitian yesterday: NO restaurant or take-out food for one month after discharge. I'll have to continue my quest for the best dim sum, Chinese tea house and banh mi (Vietnamese sandwich on fresh-baked baguette) in the San Gabriel Valley after Christmas.
As a consolation prize, my Taiwan-born foodie-dietitian has promised to write down HER recommendations in two of the categories, along with a list of her favorite food bloggers. (In the San Gabriel Valley, it seems that the best food bloggers are Asian-Americans in their 20s or 30s.)
I will be allowed to have restaurant tea, as long as it's hot. (Dr. Forman had given me permission last week to bring in passion fruit tea from Au 79. Had he realized that the tea was iced and included bits of fresh fruit, it would have been a no-no. Oops.) My dietitian recommends (and permits) the Tea Station's almond green tea (green tea with hot almond milk.) Friends: Get ready for a lot of field trips with me to Alhambra, Arcadia, San Gabriel and Temple City for tea.
The good news is that I am permitted home-cooked food, as long as my healthy friends can attest that the vegetables and fruits were well washed and that the food was not contaminated with coughs or sneezes.
I think I know someone who makes a killer sweet potato pie. I'll bet it will taste great with almond tea.
As a consolation prize, my Taiwan-born foodie-dietitian has promised to write down HER recommendations in two of the categories, along with a list of her favorite food bloggers. (In the San Gabriel Valley, it seems that the best food bloggers are Asian-Americans in their 20s or 30s.)
I will be allowed to have restaurant tea, as long as it's hot. (Dr. Forman had given me permission last week to bring in passion fruit tea from Au 79. Had he realized that the tea was iced and included bits of fresh fruit, it would have been a no-no. Oops.) My dietitian recommends (and permits) the Tea Station's almond green tea (green tea with hot almond milk.) Friends: Get ready for a lot of field trips with me to Alhambra, Arcadia, San Gabriel and Temple City for tea.
The good news is that I am permitted home-cooked food, as long as my healthy friends can attest that the vegetables and fruits were well washed and that the food was not contaminated with coughs or sneezes.
I think I know someone who makes a killer sweet potato pie. I'll bet it will taste great with almond tea.
Tuesday, November 27, 2007
Nap time WILL be enforced!
Hi! It's your faithful Cancer Correspondent checking in on behalf of certain local members of Team Susan who are a tiny bit concerned that once Smooky gets home she'll:
a) take up skydiving since she doesn't have to worry about messing up her hair,
b) start training for the L.A. Marathon, or
c) offer to double-check the holiday lights on Christmas Tree Lane by climbing up each tree like a monkey.
Let's make it easy for Susan to take it easy during the holiday season. When you have a moment, email Janet Aird to update your availability to hang with our favorite multi-tasking lymphomaniac for an hour or two.
She may need a ride to CoH or help running errands. (Note: if she wants to re-roof the house "just for fun," you have permission to tie her to a chair and call for reinforcements)
a) take up skydiving since she doesn't have to worry about messing up her hair,
b) start training for the L.A. Marathon, or
c) offer to double-check the holiday lights on Christmas Tree Lane by climbing up each tree like a monkey.
Let's make it easy for Susan to take it easy during the holiday season. When you have a moment, email Janet Aird to update your availability to hang with our favorite multi-tasking lymphomaniac for an hour or two.
She may need a ride to CoH or help running errands. (Note: if she wants to re-roof the house "just for fun," you have permission to tie her to a chair and call for reinforcements)
A Day in the Life
Most frequently asked question: What do you do all day? (I'm sure friends really mean "What the h*** do you do all day?") Everyone expects me to be bored and antsy, but I'm not.
Before I check out, I thought I'd take you through a day in the life at Hotel Hope.
Monday, November 27
7 am to 11am: Met with Dr. Forman, ate breakfast (tea and fresh orange), watched the Today Show, entered blood counts in spread sheet, posted blog, took meds and Benadryl, received platelets, took nap. I discovered that the oral form of Benadryl leaves me much less groggy than the drip. Received at least ten visits from nurses and PCA to check vitals, share blood count results, give meds, change IV bags, calm beeping IV pole, administer platelets, check toilet contents, etc.
11am to 11:45 am: Hematology patient exercise class. This was a blast. While we worked out, we shared laughs about the many indignities of being a patient.
11:45 am to noon: Pole danced.
Noon to 1 pm: Visited with Dave, my mantle cell lymphoma (MCL) mirror image. (We're both one-in-a-million MCLers with the disease manifesting itself around our eyes - his left, my right.) He's now two years post transplant and was at CoH for his six-month CT scan and blood test. He's a funny guy and had me in stitches with his "war stories."
1 pm to 2:00 pm: Ordered and ate lunch (patient-made tuna salad: tuna, boiled egg, relish, mustard, mayo on saltines). Watched the Food Network. Checked email and favorite blogs. Talked on phone. Received multiple visits from nurse and PCA.
2:00 pm to 2:30 pm: Napped.
2:30 pm to 3:05 pm: Got unleashed from my dance partner. Did a 1.5 mile walk. I found out last week that I'm allowed to enter the door that says "Authorized Personnel Only," making it easier to make a big lap around the entire floor. If I throw in a mini jaunt around the lobby, ten laps equals 1.5 miles.
3:05 to 3:30 pm: Showered, groomed, changed clothing.
3:30 to 3:45 pm: Received an in-room haircut. Got rehooked to dance partner.
3:45 pm to 5:00 pm: Watched end of Oprah and all of Ellen Show (I love Ellen) while catching up on email.
5:00 pm to 6:00 pm: Read NY Times online. Fixated on article about over 50's volunteering for the Peace Corps. Talked on phone.
6:00 pm to 7:00 pm: Ordered and ate dinner (hamburger patty with grilled tomato and onions, carton of milk).
7:00 pm to 8:00 pm: Tired. Watched mindless sitcom reruns. Didn't attempt to multi-task.
8:00 pm to 10:00 pm: Enjoyed Christmas Caroling by the City of Hope Singers. Surfed food blogs and worked on my list of "things to eat" when I return home. Caught up on email. Talked on phone. Revised IWOSC's evite for holiday party.
10:00 pm to 11:00 pm: Watched Seinfeld reruns while reading LA Times.
11:00 pm to 11:30 pm: Contemplated the many things for which I'm thankful; fell asleep.
Before I check out, I thought I'd take you through a day in the life at Hotel Hope.
Monday, November 27
7 am to 11am: Met with Dr. Forman, ate breakfast (tea and fresh orange), watched the Today Show, entered blood counts in spread sheet, posted blog, took meds and Benadryl, received platelets, took nap. I discovered that the oral form of Benadryl leaves me much less groggy than the drip. Received at least ten visits from nurses and PCA to check vitals, share blood count results, give meds, change IV bags, calm beeping IV pole, administer platelets, check toilet contents, etc.
11am to 11:45 am: Hematology patient exercise class. This was a blast. While we worked out, we shared laughs about the many indignities of being a patient.
11:45 am to noon: Pole danced.
Noon to 1 pm: Visited with Dave, my mantle cell lymphoma (MCL) mirror image. (We're both one-in-a-million MCLers with the disease manifesting itself around our eyes - his left, my right.) He's now two years post transplant and was at CoH for his six-month CT scan and blood test. He's a funny guy and had me in stitches with his "war stories."
1 pm to 2:00 pm: Ordered and ate lunch (patient-made tuna salad: tuna, boiled egg, relish, mustard, mayo on saltines). Watched the Food Network. Checked email and favorite blogs. Talked on phone. Received multiple visits from nurse and PCA.
2:00 pm to 2:30 pm: Napped.
2:30 pm to 3:05 pm: Got unleashed from my dance partner. Did a 1.5 mile walk. I found out last week that I'm allowed to enter the door that says "Authorized Personnel Only," making it easier to make a big lap around the entire floor. If I throw in a mini jaunt around the lobby, ten laps equals 1.5 miles.
3:05 to 3:30 pm: Showered, groomed, changed clothing.
3:30 to 3:45 pm: Received an in-room haircut. Got rehooked to dance partner.
3:45 pm to 5:00 pm: Watched end of Oprah and all of Ellen Show (I love Ellen) while catching up on email.
5:00 pm to 6:00 pm: Read NY Times online. Fixated on article about over 50's volunteering for the Peace Corps. Talked on phone.
6:00 pm to 7:00 pm: Ordered and ate dinner (hamburger patty with grilled tomato and onions, carton of milk).
7:00 pm to 8:00 pm: Tired. Watched mindless sitcom reruns. Didn't attempt to multi-task.
8:00 pm to 10:00 pm: Enjoyed Christmas Caroling by the City of Hope Singers. Surfed food blogs and worked on my list of "things to eat" when I return home. Caught up on email. Talked on phone. Revised IWOSC's evite for holiday party.
10:00 pm to 11:00 pm: Watched Seinfeld reruns while reading LA Times.
11:00 pm to 11:30 pm: Contemplated the many things for which I'm thankful; fell asleep.
Homecoming Queen
It's official. God willing and the creek don't rise, I'll be going home on Thursday.
I'm still in an excited state of disbelief.
I'm still in an excited state of disbelief.
Monday, November 26, 2007
Losing Days and Years
Once I asked an E.B. White scholar why White's essay, "Once More to the Lake," is so much anthologized and taught, and he answered: Because it's the best essay in the English language. Or something to that effect. Which may be why I'm calling it to mind. I guess a great piece of writing is one that you call to mind to encapsulate your own experiences, among other things. White writes about going to the lake in the summer as a boy and going back as a father, and that slippage that happens in which everything about the place seems eternal, and he doesn't know any more if he's the boy or the father or what year it is. That same feeling is in Thorton Wilder's "Long Christmas Dinner." It all takes place at, well, a Christmas dinner table, and it's populated by generations of a family. The members grow old and die (walk offstage) and different ones (who look more or less the same) come to the table and grow older. Some repeat the phrases of the elders. When we come together for a holiday, the same place, the same people (more or less), it's like one long event, punctuated by your life outside. Last week I stayed at the preposterously spelled Hilton Lincoln Centre in Dallas, which used to be the Double Tree, just like I've gone for we don't remember how many years. At the gargantuan buffet there was the same ice sculpture of a turkey and the same thawed shrimp and crab claws as in years past, and I remembered my great-aunt E heaping her plate with shrimp, and others remembered our cousin C piling everything on his plate, back before he became glatt kosher and stopped eating *anything* in non-kosher places. It was gradual: He'd just eat vegetables, and then just drink water, and then just come and not ingest anything. Aunt E died several years ago, and, eerily, after she died, I received a new year's card from her. Inside was a note from her daughter explaining that she'd found it on her mother's desk. C is still alive and well, but in Israel this year with his new bride. He called while we were at table, and the phone was passed around. After dinner together Friday night at a place called Celebration, which I claimed never to have set foot in before, and which everyone said I'd been to, some of us went back to the hotel. One of the little cousins, M, said he remembered when the hotel had large ceramic lions. I do, too. The place is decorated now in wavy-line Retro, but used to be Large-Scale Asian, which was rather attractive and plush but absurd. When it was the Double Tree, we used to get a dense chocolate chip cookie at check-in. When we were sitting in the lobby and talking, M and his brothers were telling stories about their father, and they seemed to be the same age their father was when we were sitting downstairs at dinner not that many years ago. But it's not the memories that unnerve me; it's the gaps in memory. I don't have clear memories of the last Thanksgiving I spent in Dallas. Two years ago I went with L to his mother's. The year before that, I spent many fruitless hours at O'Hare waiting and finally took a taxi home at about 4am. My bag, on the other hand, made a round trip to Dallas. The year before that? I must have been in Dallas. Was that when the Hilton was the Double Tree? I don't remember. Or was that the year we met in Houston? That year my little cousin (first cousin once removed) J was a freshman at Harvard. He just graduated in May so that was 2003. My last Dallas Thanksgiving had to have been five years ago. Then there were bar mitzvahs in Dallas, which feel the same, more or less, as the Thanksgivings, same basic players. My father's side of the family meets in Houston on the other feasting holiday, Passover. The memories of those gatherings overlap, too. We take pictures so that we'll remember. Photos as aides-memoires. You always hear statistics like: people only use one-tenth or one-fifth or 2 percent of their brain capacities. Does that mean that we have the capacity to remember more than we do? I used to know everyone in my senior class of about 750. I wonder if I'd looked at our very horizontal class picture every day, would I still recall everyone's name? The real question is, Why would I want to?
Thanksgiving
I guess I should have posted this when it was the holiday, but I worked the holiday and weekend so didn't think of posting then. I also went to see the Chicago Symphony Orchestra directed by John Williams with my daughter followed by a night in a Chicago hotel after the holiday, so it wasn't all work, it was also some play that delayed this post!
I am thankful for so many things. I'm thankful for the family times I am able to share with my husband and kids. I'm thankful I am here to watch my kids grow up. I am thankful for my health. I am very, very thankful to be an almost 7 year survivor of what some call "the kiss of death", signet ring appendiceal cancer.
But what I am especially grateful for is the opportunity and purpose my survival has offered me. I struggled as a survivor for a long time not so much with survivor guilt as with an obsessive need to find purpose in my survial. I drove my best friend and a few others nuts when I incessantly talked about needing to find purpose in my life.
When I finally made the decision to muddle through creating a web site, I never knew, I never thought for a moment of the gifts I would be given in return, the people I would meet as a result. I never anticipated the purpose I would realize as a result of my having had cancer. So many of you who have contacted me have inspired me greatly and given my life a new meaning. I'm sure this sounds strange to some, but I wouldn't go back to my before cancer life if I could now. My life is so much richer now than it was before cancer.
I thank all of you I've met while on this journey, you've all enriched my life and given meaning to what was once a very tough journey.
I am thankful for so many things. I'm thankful for the family times I am able to share with my husband and kids. I'm thankful I am here to watch my kids grow up. I am thankful for my health. I am very, very thankful to be an almost 7 year survivor of what some call "the kiss of death", signet ring appendiceal cancer.
But what I am especially grateful for is the opportunity and purpose my survival has offered me. I struggled as a survivor for a long time not so much with survivor guilt as with an obsessive need to find purpose in my survial. I drove my best friend and a few others nuts when I incessantly talked about needing to find purpose in my life.
When I finally made the decision to muddle through creating a web site, I never knew, I never thought for a moment of the gifts I would be given in return, the people I would meet as a result. I never anticipated the purpose I would realize as a result of my having had cancer. So many of you who have contacted me have inspired me greatly and given my life a new meaning. I'm sure this sounds strange to some, but I wouldn't go back to my before cancer life if I could now. My life is so much richer now than it was before cancer.
I thank all of you I've met while on this journey, you've all enriched my life and given meaning to what was once a very tough journey.
The Best News Yet
I'm always happy to see Dr. Forman during his early morning rounds. This morning I was doubly happy because he's been away for a few days AND he came bearing good news.
My white counts more than doubled since yesterday to an astounding 2.8, and my red blood cells are still maintaining their levels. As I predicted, my platelets fell to 15, so I'll need another transfusion today. Dr. Forman said that platelets are always the last to rise.
The great news is that I may be able to go home THIS WEEK. The stubborn platelets are not an issue because Dr. Forman said that I can easily come in to CoH for transfusions. This is the best, most unexpected news ever!
My white counts more than doubled since yesterday to an astounding 2.8, and my red blood cells are still maintaining their levels. As I predicted, my platelets fell to 15, so I'll need another transfusion today. Dr. Forman said that platelets are always the last to rise.
The great news is that I may be able to go home THIS WEEK. The stubborn platelets are not an issue because Dr. Forman said that I can easily come in to CoH for transfusions. This is the best, most unexpected news ever!
Sunday, November 25, 2007
The Yellow Mask
Today I said goodbye to the thick, tight blue mask for patients with the lowest white blood cell (WBC) counts. I may now leave the room with a soft, loose yellow mask, the accessory of choice for patients who have broken the 700 (.7) mark.
That's right - I'm finally responding to Neupogen, the WBC booster I've received for six days in a row. I was discouraged on Thanksgiving morning when I discovered that my count had plummeted to .3. Then I remembered that WBCs are a lot like a bad drunk - they have to hit bottom before they can pull themselves up. After falling to their nadir, my WBCs have now risen to an impressive 1.3.
My red cells and hemoglobin are also holding their own. I received a transfusion on Thanksgiving Day, and instead of a one day boost followed by a fall, the reds have continued to slowly multiply.
The platelets are a different story. I had a transfusion on Friday, but it looks like I'll need another one tomorrow.
What is it with me and little plates? You may recall that my platelets had the most difficulty recovering after previous chemo sessions, taking four to five weeks instead of the requisite two.
At least while my platelets are recovering, the yellow mask will allow my world to expand slightly. I'll be able to participate in the hematology patient exercise class and will be allowed to attend the repeat performance at the Comedy Center on Wednesday.
Day 10
11-25-07 Counts:
(Numbers in parentheses are normal ranges.)
WBC 1.3 (4.0-11)
RBC 3.06 (3.8-5.2)
HGB 10.2 (11.5-15.5)
PLT 23 (150-350)
CALL FOR ASSISTANCE: Does anyone know if it's possible to attach a spreadsheet to a blog post?
That's right - I'm finally responding to Neupogen, the WBC booster I've received for six days in a row. I was discouraged on Thanksgiving morning when I discovered that my count had plummeted to .3. Then I remembered that WBCs are a lot like a bad drunk - they have to hit bottom before they can pull themselves up. After falling to their nadir, my WBCs have now risen to an impressive 1.3.
My red cells and hemoglobin are also holding their own. I received a transfusion on Thanksgiving Day, and instead of a one day boost followed by a fall, the reds have continued to slowly multiply.
The platelets are a different story. I had a transfusion on Friday, but it looks like I'll need another one tomorrow.
What is it with me and little plates? You may recall that my platelets had the most difficulty recovering after previous chemo sessions, taking four to five weeks instead of the requisite two.
At least while my platelets are recovering, the yellow mask will allow my world to expand slightly. I'll be able to participate in the hematology patient exercise class and will be allowed to attend the repeat performance at the Comedy Center on Wednesday.
Day 10
11-25-07 Counts:
(Numbers in parentheses are normal ranges.)
WBC 1.3 (4.0-11)
RBC 3.06 (3.8-5.2)
HGB 10.2 (11.5-15.5)
PLT 23 (150-350)
CALL FOR ASSISTANCE: Does anyone know if it's possible to attach a spreadsheet to a blog post?
Happy Freakin' Birthday to Me
I'm 32 today. I'd like to thank and congratulate my mother for giving birth to me 32 years ago. No one ever remembers their mothers on their birthday, but yeah, folks, your momma's the one who went through the pain of bringing you into this world. I was a c-section baby, so for the longest time, I thought all babies were cut out of their mother's stomachs. The doctor even cut my face on my way out, so I have a battle scar from birth.
Who knew that on my 32nd birthday, I'd feel so old and creaky and be bald? But I've got the cutest, sweetest kiddins on the planet, a caring, loving hubby, awesome friends, and a colorful family. The best presents ever.
Who knew that on my 32nd birthday, I'd feel so old and creaky and be bald? But I've got the cutest, sweetest kiddins on the planet, a caring, loving hubby, awesome friends, and a colorful family. The best presents ever.
Saturday, November 24, 2007
Thanksgiving
I went to Dallas for Thanksgiving, where my great-grandfather settled for reasons lost to the mists of time. He was a blacksmith. There will be a family reunion there around Xmas, and for some reason I can't remember I exhorted all my relatives to attend. Now in order to show good faith, I need to go, too. I tried to recall why I wanted to go, aside from finding out about cancer in the family, but I don't think there's much interest in that. I probably don't need it, since I don't have that gene mutation. Anyway, I realized the reason I want to go is to find out why Great-grandfather Max R ended up in Dallas. There was the very strangely-named Industrial Removal Office, which existed to remove Jews from New York City. It was founded by German Jews who were afraid that if there were too many greenhorn Eastern European Jewish riffraff (such as my ancestors) around the city, speaking Yiddish, gesticulating, and being Orthodox, they would destroy all the hard-won assimilation points that the earlier immigrants had earned. (OK, they also wanted the new immigrants to have jobs.) This is how the removal service worked: Agents of the IRO would travel around the hinterlands and find out what sort of workers were needed in various towns. Maybe Atlanta needed a cobbler and three tailors. The guy would report back to New York, which would send out a new immigrant cobbler and three tailors post-haste. The IRO was founded in 1901, which was after Max R had settled in Dallas, so the records of the IRO won't help us. Maybe the other R relatives at the reunion will know something. My aunt said that she heard that the Rs set out for the Far West from Texas in Conestoga wagons, that the Rs were the scouts at the head of the line. This is laughable, considering that our family motto is Not So Fast. But maybe the ones who went West were fast, and left the cautious ones behind. We shall see. I am more timid than most of my friends, but to my family, I'm Amelia Earhart. I came North at 18, thinking it was East. It took me several years and as many plane rides to realize that Chicago and New York City were not in the same region.
These are the little cousins, the ones a generation in front of (behind?) me. Some of them are ruby- and white-eyed from the flash. Three little cousins weren't there. In the napkin-covered baskets are squares of excellent corn bread--not sweet like the Yankee style.
These are the little cousins, the ones a generation in front of (behind?) me. Some of them are ruby- and white-eyed from the flash. Three little cousins weren't there. In the napkin-covered baskets are squares of excellent corn bread--not sweet like the Yankee style.
Hair, we go again
A week ago, my scalp became tender to the touch. I knew what this meant: I was about to go bald again.
Sure enough, my hair has been shedding like a cheap rug. Clumps of hair swirl down the shower drain. Tufts of hair cover my pillow case. Strands of hair sweep across the floor. Every day, a nurse encourages me to go ahead and take it all off, but I'm hanging on until Monday for the clipping ceremony.
I'm thinking of forming a "bald again" club (although it sounds like a cult) for those who have gone bald twice in the same year. I think our numbers are relatively small because it's unusual to have enough time between treatments for the hair to grow back.
But I'll have to be careful about setting up the criteria for membership. What if Britney says, "Oops, I did it again" and takes the clippers to her scalp one more time.
.
Turkey Day 2007
Ate well fried a turkey, enjoyed the family only to get hospitalized the next day 11/23/07 (5 five day of isolation on what I consider the worst floor in the hospital). It seems the RSV virus has shown its ugly head.
Friday, November 23, 2007
Thanksgiving Wrapup
How was your Thanksgiving?
Yesterday I realized that, in the past, my answer to this question depended on the succulence of the turkey breast, the tastiness of the stuffing (my favorite part of the meal) or the flakiness of the pie crust. A well-executed vegetable dish, such as roasted Brussels sprouts, could elevate the meal and the memories to mythic proportions.
Based on these criteria, I would have declared yesterday an unprecedented disaster, the worst Thanksgiving since 1621. The turkey slice was pressed, the vegetables frozen, the potatoes instant and the pumpkin pie crust flakeless. Even if I had an appetite, this meal would have been inedible. After two forced bites of each food, I discovered that my hair was shedding on the plate. That was the only excuse I needed to stop.
Thanksgiving dinner at the City of Hope
(If you click to enlarge and look closely, you can see my shedding hair.)
Thank God, I now have a new set of criteria for answering the question, "How was your Thanksgiving?" By my new standards (including depth and breadth of thanks), I declare Thanksgiving 2007 one of the best ever.
But before I came to this declaration, a few challenges nearly derailed me. First, of course, was my loss of Internet access. Then Cindy called pleading with me to budge on a non-negotiable boundary. I held my ground, but gee whiskers, it was exhausting. And then I woke up on Thanksgiving morning expecting my blood counts to be on the upswing. Instead, my white blood cells had plummeted to .3 and my reds were crying out for a transfusion.
My first thought was, "Why is this happening? Isn't it enough to be recovering from killer chemo?" And then I realized that I had become a little smug about my "attitude of gratitude." Could I still be grateful when the edges appeared to be unraveling?
When I started thinking about everything I have to be thankful for, the answer was yes. Family. An abundance of good friends. The many angels at the City of Hope. The kindness of strangers. Health. (I could keep going and going.)
You may be surprised to see "health" on the thanks list of a cancer patient. The truth is that, except for this mantle cell lymphoma thing, I'm in excellent health. A recent night of eight hours of chemo-prompted throwing up and blood pressure levels near comatose make me really appreciate that good health.
That health was good enough yesterday to enjoy a long visit with George and Cindy and shorter visits with three other friends. I also talked with more than a dozen family members and friends during the day. All of the stimulation called for a 6 pm nap, the first non-Benadryl-induced slumber I've enjoyed since arriving at Hotel Hope.
The magnificent view from my room at City of Hope.
Cindy brought me the beautiful leaves as a Thanksgiving present.
So . . . How was your Thanksgiving?
Yesterday I realized that, in the past, my answer to this question depended on the succulence of the turkey breast, the tastiness of the stuffing (my favorite part of the meal) or the flakiness of the pie crust. A well-executed vegetable dish, such as roasted Brussels sprouts, could elevate the meal and the memories to mythic proportions.
Based on these criteria, I would have declared yesterday an unprecedented disaster, the worst Thanksgiving since 1621. The turkey slice was pressed, the vegetables frozen, the potatoes instant and the pumpkin pie crust flakeless. Even if I had an appetite, this meal would have been inedible. After two forced bites of each food, I discovered that my hair was shedding on the plate. That was the only excuse I needed to stop.
Thanksgiving dinner at the City of Hope
(If you click to enlarge and look closely, you can see my shedding hair.)
Thank God, I now have a new set of criteria for answering the question, "How was your Thanksgiving?" By my new standards (including depth and breadth of thanks), I declare Thanksgiving 2007 one of the best ever.
But before I came to this declaration, a few challenges nearly derailed me. First, of course, was my loss of Internet access. Then Cindy called pleading with me to budge on a non-negotiable boundary. I held my ground, but gee whiskers, it was exhausting. And then I woke up on Thanksgiving morning expecting my blood counts to be on the upswing. Instead, my white blood cells had plummeted to .3 and my reds were crying out for a transfusion.
My first thought was, "Why is this happening? Isn't it enough to be recovering from killer chemo?" And then I realized that I had become a little smug about my "attitude of gratitude." Could I still be grateful when the edges appeared to be unraveling?
When I started thinking about everything I have to be thankful for, the answer was yes. Family. An abundance of good friends. The many angels at the City of Hope. The kindness of strangers. Health. (I could keep going and going.)
You may be surprised to see "health" on the thanks list of a cancer patient. The truth is that, except for this mantle cell lymphoma thing, I'm in excellent health. A recent night of eight hours of chemo-prompted throwing up and blood pressure levels near comatose make me really appreciate that good health.
That health was good enough yesterday to enjoy a long visit with George and Cindy and shorter visits with three other friends. I also talked with more than a dozen family members and friends during the day. All of the stimulation called for a 6 pm nap, the first non-Benadryl-induced slumber I've enjoyed since arriving at Hotel Hope.
The magnificent view from my room at City of Hope.
Cindy brought me the beautiful leaves as a Thanksgiving present.
Mac to Mac
The Carriers are now a two-Mac family. I'm the proud owner of a spankin' new MacBook, and Cindy is the beaming owner of a slightly used iBook. We're both thrilled.
After my unfortunate incident on Wednesday, I was devastated. I focused on trying to figure out the fastest and easiest way to pull off the minor repair to my iBook. At the same time, I explored wireless service options so that I could at least use the laptop in the lobby. I found out that Verizon, my cell phone provider, wants $69.95 a month AND a one-year contract for the privilege. No, thank you.
And then the obvious hit me. Two hours before the accident, Cindy had requested her own laptop for Christmas. I acknowledged that she needed one, confessed that I was longing for the new MacBook and asked how she felt about inheriting my iBook. She agreed that it sounded like a great plan. The "great fall" just moved up our time line a few weeks.
George braved the Pasadena Apple Store on "Black Friday," the second busiest shopping day of the year. (Busiest is the Saturday before Christmas.) Apple NEVER has sales, so I was stunned to find out that my MacBook was $100 cheaper, today only. After a few phone exchanges between me and salesman Troy, George sealed the deal
He delivered my new MacBook, adding "The important thing is that we get you online again ASAP." In that spirit, I wasted no time in tearing the Mac out of its box and booting it up.
I was thrilled to find out that I had an option of automatically transferring files from Mac to Mac. That is, I could if I happened to have a FireWire cable. George headed for the closest Target and returned in less than an hour with the appropriate cable. 30 minutes later, the file transfers were complete and my new Mac was ready to go online.
George was my hero today.
Thursday, November 22, 2007
On the Bus
I was on the bus yesterday, going home after massage therapy. I take the bus a lot now, to go to and from all my appointments along Broadway, which is one of the main drags in Vancouver. There are two buses that I could take: the 9 or the 99. The 9 is like the everyday people bus--folks look a little more sullen and don't smell as good. The 99 is the express bus that goes to UBC, so it's full of university students. Most of the time, I take the 9 because I can't stand the chatter of students, even though the 9 takes longer than the 99. But yesterday, I caught the 99 because it was the first bus that pulled up.
The bus was packed, but I was able to take a seat when a bunch of people got off at Granville. There were two women sitting across from me, bitching about their professors. I gathered that they were grad students from the way they were talking about theory and such. One of the girls was complaining about some criticism her professor made of her performance in class, and she began her sentence with "I appreciate what he's saying, but...." Which got me thinking about euphemisms in academia. Basically, when someone says they appreciate what you're saying, what they mean is that they think you're full of shit, which is also what they're saying when they state, "That's interesting." When they say, "That's interesting," they really think what you're saying is completely idiotic. Now when someone says, "I find that fascinating," what that means is that they're not sure if you are full of shit or not, but they think what they're saying might be full of shit too, so they will investigate the comment to decide on the exact content of BS later.
What the fuck does this have to do with my cancer? I don't know. I just wanted to sound pretentious.
But really, I wouldn't have been thinking about this if I didn't have cancer, because if I didn't have cancer, I wouldn't have been on that bus going home from massage therapy, which helps get rid of some of the pains of cancer.
The other meandering thought that I had while on the bus: there was a woman standing in front of me as I was sitting down. She was about 20 years older than me, or so she appeared. My first thought was, "I should let her sit down because that's the polite thing to do for older people." Then I thought, "Screw that. I have cancer, and she's only about 55 or whatever anyway." Just as I was about to whip off my hat to demonstrate the level of my sickness, I noticed that she was wearing a wig. I can spot fake hair a mile away now. Then I thought, "Shit, she probably has cancer too." But I sat there anyway.
It got me thinking about the hierarchy of illness, especially when it comes to cancer. The day before, I was at the acupuncturist, and there were two other women in the room with me. My acupuncturist said, "This is Blahblah...She's got a rare form of cancer. So rare that only three people in Canada have been diagnosed with it--and I'm treating two of them!" He beamed. The woman just sighed. The first words out of my mouth were, "Wow." But then I thought, What a dumb thing to say. Wow, like impressive? Or wow, like unbelievable? Either way, my gut reaction was that I felt icky for saying "Wow." But yeah, I've noticed how people like to one-up everyone else with cancer stories. Makes me feel weird.
Like when people say to me, "My sister had cancer, and it was awful for her, but she didn't complain at all." Like, wow, good for her, she's such a fucking hero. What's with the heroics of not saying anything when you feel like you're going to die? It's like when women, or their husbands, brag that they didn't have an epidural or scream when they were pushing a melon-head out of their vaginas. Cuz you know--it makes me feel better to bitch and moan and cry and wail when my body feels like it's being ripped open or aching with every little breath. Being silent is only an option for when I'm really dead.
I guess that's the stigma of cancer. Not supposed to talk about pain and death and dying. But really, that's what's going on inside the head sometimes. I myself find that really interesting. Fascinating.
The bus was packed, but I was able to take a seat when a bunch of people got off at Granville. There were two women sitting across from me, bitching about their professors. I gathered that they were grad students from the way they were talking about theory and such. One of the girls was complaining about some criticism her professor made of her performance in class, and she began her sentence with "I appreciate what he's saying, but...." Which got me thinking about euphemisms in academia. Basically, when someone says they appreciate what you're saying, what they mean is that they think you're full of shit, which is also what they're saying when they state, "That's interesting." When they say, "That's interesting," they really think what you're saying is completely idiotic. Now when someone says, "I find that fascinating," what that means is that they're not sure if you are full of shit or not, but they think what they're saying might be full of shit too, so they will investigate the comment to decide on the exact content of BS later.
What the fuck does this have to do with my cancer? I don't know. I just wanted to sound pretentious.
But really, I wouldn't have been thinking about this if I didn't have cancer, because if I didn't have cancer, I wouldn't have been on that bus going home from massage therapy, which helps get rid of some of the pains of cancer.
The other meandering thought that I had while on the bus: there was a woman standing in front of me as I was sitting down. She was about 20 years older than me, or so she appeared. My first thought was, "I should let her sit down because that's the polite thing to do for older people." Then I thought, "Screw that. I have cancer, and she's only about 55 or whatever anyway." Just as I was about to whip off my hat to demonstrate the level of my sickness, I noticed that she was wearing a wig. I can spot fake hair a mile away now. Then I thought, "Shit, she probably has cancer too." But I sat there anyway.
It got me thinking about the hierarchy of illness, especially when it comes to cancer. The day before, I was at the acupuncturist, and there were two other women in the room with me. My acupuncturist said, "This is Blahblah...She's got a rare form of cancer. So rare that only three people in Canada have been diagnosed with it--and I'm treating two of them!" He beamed. The woman just sighed. The first words out of my mouth were, "Wow." But then I thought, What a dumb thing to say. Wow, like impressive? Or wow, like unbelievable? Either way, my gut reaction was that I felt icky for saying "Wow." But yeah, I've noticed how people like to one-up everyone else with cancer stories. Makes me feel weird.
Like when people say to me, "My sister had cancer, and it was awful for her, but she didn't complain at all." Like, wow, good for her, she's such a fucking hero. What's with the heroics of not saying anything when you feel like you're going to die? It's like when women, or their husbands, brag that they didn't have an epidural or scream when they were pushing a melon-head out of their vaginas. Cuz you know--it makes me feel better to bitch and moan and cry and wail when my body feels like it's being ripped open or aching with every little breath. Being silent is only an option for when I'm really dead.
I guess that's the stigma of cancer. Not supposed to talk about pain and death and dying. But really, that's what's going on inside the head sometimes. I myself find that really interesting. Fascinating.
How to Learn About the Mesothelioma Cancer Diagnosis Process
Mesothelioma is the term used to define cancer that afflicts the tissue surrounding the body's organs. Mesothelioma also affects the fluid and tissue in the space between organs. This makes mesothelioma one of the more difficult cancers to detect, as symptoms usually don't appear until the cancer is in more advanced (and more dangerous) stages. If you suspect you may have mesothelioma, it's important to begin the diagnosis process as soon as possible.
Understand the Mesothelioma Diagnosis Process:
Expect a CT Scan to be one of the first tools used in a mesothelioma diagnosis. The CT scan is able to process a detailed image of your abdomen to determine
Know that an X-ray is a common first step in any mesothelioma diagnosis process. Although it cannot directly detect the presence of mesothelioma, a chest X-ray is capable of detecting a thickening of the lining of the lungs.
Use the PET scan as another tool to detect the presence of mesothelioma. Although still technically in trials, PET scans introduce radioactive glucose into the body. These radioactive sugars become concentrated in cancerous tissue, although simple scar tissue is known to attract them, as well.
Expect fluid and tissue samples to be taken as a diagnostic tool, although less invasive methods like the CT scan or the MRI are more common.
Know that surgery is sometimes used in the diagnosis process, since it can be difficult in some cases to conclusively identify malignant tissue.
Avoid asbestos at all costs. Asbestos is the leading cause of mesothelioma, so people who are exposed through construction, mining or manufacturing should be tested for exposure on a regular basis.
Overall Tips & Warnings:
Be aware that the Patient Bill of Rights give you the authority to participate in any and all decisions related to your treatment. You can say yes or no to any treatment option presented, as well as any and all diagnosis options that are available.
Ask your doctor to explain the diagnosis process to you in plain English. If you speak a different language, ask for a translator. It's your right.
Stop smoking right away, particularly when facing the possibility of mesothelioma treatment. Smoking is known to intensify the side effects of chemotherapy and radiation treatment. Continue to abstain from smoking after your treatments are done.
Feelings of depression and anger are quite common in cancer patients. Learn to deal with this flood of emotions by speaking to a religious leader, friend, therapist or support group.
Understand the Mesothelioma Diagnosis Process:
Expect a CT Scan to be one of the first tools used in a mesothelioma diagnosis. The CT scan is able to process a detailed image of your abdomen to determine
Know that an X-ray is a common first step in any mesothelioma diagnosis process. Although it cannot directly detect the presence of mesothelioma, a chest X-ray is capable of detecting a thickening of the lining of the lungs.
Use the PET scan as another tool to detect the presence of mesothelioma. Although still technically in trials, PET scans introduce radioactive glucose into the body. These radioactive sugars become concentrated in cancerous tissue, although simple scar tissue is known to attract them, as well.
Expect fluid and tissue samples to be taken as a diagnostic tool, although less invasive methods like the CT scan or the MRI are more common.
Know that surgery is sometimes used in the diagnosis process, since it can be difficult in some cases to conclusively identify malignant tissue.
Avoid asbestos at all costs. Asbestos is the leading cause of mesothelioma, so people who are exposed through construction, mining or manufacturing should be tested for exposure on a regular basis.
Overall Tips & Warnings:
Be aware that the Patient Bill of Rights give you the authority to participate in any and all decisions related to your treatment. You can say yes or no to any treatment option presented, as well as any and all diagnosis options that are available.
Ask your doctor to explain the diagnosis process to you in plain English. If you speak a different language, ask for a translator. It's your right.
Stop smoking right away, particularly when facing the possibility of mesothelioma treatment. Smoking is known to intensify the side effects of chemotherapy and radiation treatment. Continue to abstain from smoking after your treatments are done.
Feelings of depression and anger are quite common in cancer patients. Learn to deal with this flood of emotions by speaking to a religious leader, friend, therapist or support group.
Wednesday, November 21, 2007
Remain calm! Do not be alarmed!
Just had a long chat with Smooky and she asked me to let you know about her latest misadventure at Hotel Hope. (You recall the time her pole attacked her, right?) Let me break it down for you:
She was using her computer while a nurse was, er, examining a boo-boo in her tush region. The phone rang and, since she was expecting a call from an old pal, she lunged for the receiver. This experience showed her that:
a) Mac laptops do not bounce when they crash to the floor, and
b) if even a microscopic tidbit of the Ethernet socket gets damaged, you can't get Internet access.
The computer works fine, but getting online is a no-go, at least for now. Her Mac can work with a wireless connection, so she plans to hoof it downstairs and figure out how to log in to the rumored WiFi signal in the lobby. But not tonight.
So it may take her a day or more to check her email and blog again. Do not be alarmed! She sounds chipper, and is really concentrating on EATING—whether she feels like it or not.
Keep the comments coming. Happy Thanksgiving to everyone on Team Susan!
She was using her computer while a nurse was, er, examining a boo-boo in her tush region. The phone rang and, since she was expecting a call from an old pal, she lunged for the receiver. This experience showed her that:
a) Mac laptops do not bounce when they crash to the floor, and
b) if even a microscopic tidbit of the Ethernet socket gets damaged, you can't get Internet access.
The computer works fine, but getting online is a no-go, at least for now. Her Mac can work with a wireless connection, so she plans to hoof it downstairs and figure out how to log in to the rumored WiFi signal in the lobby. But not tonight.
So it may take her a day or more to check her email and blog again. Do not be alarmed! She sounds chipper, and is really concentrating on EATING—whether she feels like it or not.
Keep the comments coming. Happy Thanksgiving to everyone on Team Susan!
A Day Without Blood
It's a no-transfusion morning, which means that I won't be taking my obligatory two-hour morning nap.
Right now, I'm force feeding myself Cheerios, milk and banana. Eating is still a long, laborious and unpleasant process, often followed by a second coming.
I'll keep this post brief because my physical therapist (PT) is returning in 15 minutes to bring me to the gym. My white counts are still too low to do the hematology exercise class or go to the comedy night, but I'm permitted to hit the treadmill.
I'm gonna' try to eat five more bites of my Cheerios before my PT returns. Let's hope the little O's stay down!
PS My PT just checked in with me, and we decided to wait until 10 am for the workout. I need to be back in the room by 10:30 am for a blood draw.
This morning's blood numbers:
(Numbers in parentheses represent normal ranges.)
WBC .6 (4.0-11)
RBC 2.79 (3.8-5.2)
HGB 9.4 (11.5-15.5)
PLT 43 (150-350)
Right now, I'm force feeding myself Cheerios, milk and banana. Eating is still a long, laborious and unpleasant process, often followed by a second coming.
I'll keep this post brief because my physical therapist (PT) is returning in 15 minutes to bring me to the gym. My white counts are still too low to do the hematology exercise class or go to the comedy night, but I'm permitted to hit the treadmill.
I'm gonna' try to eat five more bites of my Cheerios before my PT returns. Let's hope the little O's stay down!
PS My PT just checked in with me, and we decided to wait until 10 am for the workout. I need to be back in the room by 10:30 am for a blood draw.
This morning's blood numbers:
(Numbers in parentheses represent normal ranges.)
WBC .6 (4.0-11)
RBC 2.79 (3.8-5.2)
HGB 9.4 (11.5-15.5)
PLT 43 (150-350)
Tuesday, November 20, 2007
That was then, this is now
A few weeks ago, I was tickled to receive this photo from an old friend, Mary Kay.
This photo reminds me that I haven't changed that much either. With life being one big hair cycle, I once again have the same 'do a quarter of a century later. (Believe me, neither the bad 70's perm nor my current '07 Kewpie doll curls were intentional.)
I may look "heavy" in the above photo, but it's misleading because I'm standing next to a buff Kate Moss. I was actually just three pounds heavier than my current chemo-chic body.
That was then, circa 1979.
Taken more than 25 years ago during a wind surfing class at Marina Del Rey, the photo made me wonder how much Mary Kay has changed. (MK left LA more than a decade ago.) I asked if her hair is as flaxen and her waistline as bee-like. She said that she's slightly thicker through the middle, but she's still a blondie blonde. Her husband adds that she "still has the same cheesy grin."This photo reminds me that I haven't changed that much either. With life being one big hair cycle, I once again have the same 'do a quarter of a century later. (Believe me, neither the bad 70's perm nor my current '07 Kewpie doll curls were intentional.)
I may look "heavy" in the above photo, but it's misleading because I'm standing next to a buff Kate Moss. I was actually just three pounds heavier than my current chemo-chic body.
This is now, November 20, 2007.
(PS I'm continuing to feel well, have only minor physical complaints and am staying busier than I ever imagined.)
War Scars/Bartleby and Bontshe
Yesterday I had a meeting with two people whom I knew, but not that well. One of them had had cancer and would always ask me, in routine e-mail correspondence, how I was doing. I would always ask her about her former cancer and she wouldn't answer. But yesterday we started talking about our cancers, comparing acupuncturists and port scars and oncologists. She told me about misdiagnoses and general mishandling of her disease at Central University Hospital, we'll call it. She had a rare form of cancer that only men in their sixties and seventies are supposed to get. She was quite ready to talk about her treatment. Now it's been six years and she's out of the danger zone, apparently. I had a student who had breast cancer, ran a marathon a few years later and then a year later (this year) I heard she was dying. I sent her a card. I was too uneasy to call. I was afraid it would be awkward. I haven't heard how she's doing. I check the obits on line every so often, to see if her name comes up. It hasn't, so far.
So we go on. I went to my acupuncturist today and he did the routine needling and cupping. I taught my last short story class at Intellectual University. We had student reports and student work and didn't have time to talk about Bartleby, the Scrivener. This is something I hadn't thought of: "He just dies ever so passively, ever so politely, passing into the next world leaving no blood on anyone’s hands." He is a gentleman down to the end. I don't think that's the essence of the story, though. I think the essence is how a man can be so beaten down by the system, by the walls (as it has been pointed out) bearing in on his office window, by the impersonality of industrial capitalism (in that way, no blood on any specific person's hands). But if you do examine his politeness and passivity (which is not the same as passive-aggressiveness or passive resistance), you might be reminded of I.L. Peretz' Bontshe the Silent, who asked for nothing on earth, and when he dies and goes to heaven, asks for nothing more than a hot roll and butter every day. The heavenly beings rebuke him for his modest request. In one translation from the Yiddish: "...slowly the judge and the angels bend their heads in shame at this unending meekness they have created on earth."
In one sense, Bartleby wasn't meek. He wanted to be passive, he wanted to do nothing, he wanted to live in his employer's office, he wanted to refuse. He was able to live as he wanted (according to his own narrow concept of desire, or simply his concept of what was possible) up until a point. His employer let him live as he liked, until the employer was embarrassed, until others were outraged. But Bartleby was meek in his desires. He had stopped desiring as others did, and required only the bare necessities. His desire had dried up so much that it could express itself only as a preference "not to." He could only respond. He could not utter that most elemental phrase that babies learn instinctively: "I want."
So we go on. I went to my acupuncturist today and he did the routine needling and cupping. I taught my last short story class at Intellectual University. We had student reports and student work and didn't have time to talk about Bartleby, the Scrivener. This is something I hadn't thought of: "He just dies ever so passively, ever so politely, passing into the next world leaving no blood on anyone’s hands." He is a gentleman down to the end. I don't think that's the essence of the story, though. I think the essence is how a man can be so beaten down by the system, by the walls (as it has been pointed out) bearing in on his office window, by the impersonality of industrial capitalism (in that way, no blood on any specific person's hands). But if you do examine his politeness and passivity (which is not the same as passive-aggressiveness or passive resistance), you might be reminded of I.L. Peretz' Bontshe the Silent, who asked for nothing on earth, and when he dies and goes to heaven, asks for nothing more than a hot roll and butter every day. The heavenly beings rebuke him for his modest request. In one translation from the Yiddish: "...slowly the judge and the angels bend their heads in shame at this unending meekness they have created on earth."
In one sense, Bartleby wasn't meek. He wanted to be passive, he wanted to do nothing, he wanted to live in his employer's office, he wanted to refuse. He was able to live as he wanted (according to his own narrow concept of desire, or simply his concept of what was possible) up until a point. His employer let him live as he liked, until the employer was embarrassed, until others were outraged. But Bartleby was meek in his desires. He had stopped desiring as others did, and required only the bare necessities. His desire had dried up so much that it could express itself only as a preference "not to." He could only respond. He could not utter that most elemental phrase that babies learn instinctively: "I want."
Fear
Having a cancer diagnosis and living with it for a long time puts a new twist on fear. I have new fears I didn't have before, and I no longer fear things that used to incite me to trembling.
I have no fear of flying at all. A little turbulence is fine. Now I know we'll all die sometime, and going down in a plane crash doesn't seem so bad when you consider the alternatives. Death is just gate from this life to the next; a shorter, less painful transition would be better. With a plane crash, there is a much less lengthy period of time in which you contemplate your demise. A few seconds of terror and then it's over before you can even feel any pain. I don't fear massive heart attacks for the same reason.
Stage fright. I no longer have stage fright. I used to be nervous about playing piano publicly, I was also a little nervous about public speaking. No more. When you first get a cancer diagnosis and you really have something to fear, all other fears pale in comparison. What's the worst that can happen playing piano publicly? Forget a note? Have to start a song over? Someone might hiss or boo?
I don't worry about meeting a bear when I backpack, though I do worry a bit about getting lost. My sense of direction is really poor and I don't want to have to hike hungry while I try to find my way back to a trailhead.
I don't worry so much about people I love dying, they'll just go on ahead of me, I'll catch up with them later. I view life from an eternal perspective now...though I can't imagine not being able to share my life with my husband and kids.
But I have new fears I didn't have before. Fear of living a purposeless and meaningless life. Fear of not making a difference in the time I am allowed on this earth. Fear of wasting time. Fear of not appreciating the gifts I've been given, of not appreciating the beauty that surrounds me, of not appreciating enough the people who have come into my life from so many different places. I don't really care how long I'm on this earth anymore, though I'd like to be able to finish raising my kids to adulthood (I'm almost there!). I just care that I use my time and my life here well, that I make a difference.
I have no fear of flying at all. A little turbulence is fine. Now I know we'll all die sometime, and going down in a plane crash doesn't seem so bad when you consider the alternatives. Death is just gate from this life to the next; a shorter, less painful transition would be better. With a plane crash, there is a much less lengthy period of time in which you contemplate your demise. A few seconds of terror and then it's over before you can even feel any pain. I don't fear massive heart attacks for the same reason.
Stage fright. I no longer have stage fright. I used to be nervous about playing piano publicly, I was also a little nervous about public speaking. No more. When you first get a cancer diagnosis and you really have something to fear, all other fears pale in comparison. What's the worst that can happen playing piano publicly? Forget a note? Have to start a song over? Someone might hiss or boo?
I don't worry about meeting a bear when I backpack, though I do worry a bit about getting lost. My sense of direction is really poor and I don't want to have to hike hungry while I try to find my way back to a trailhead.
I don't worry so much about people I love dying, they'll just go on ahead of me, I'll catch up with them later. I view life from an eternal perspective now...though I can't imagine not being able to share my life with my husband and kids.
But I have new fears I didn't have before. Fear of living a purposeless and meaningless life. Fear of not making a difference in the time I am allowed on this earth. Fear of wasting time. Fear of not appreciating the gifts I've been given, of not appreciating the beauty that surrounds me, of not appreciating enough the people who have come into my life from so many different places. I don't really care how long I'm on this earth anymore, though I'd like to be able to finish raising my kids to adulthood (I'm almost there!). I just care that I use my time and my life here well, that I make a difference.
Monday, November 19, 2007
A Patient's Life
I've already received several frantic, "Are you OK? You haven't blogged" phone calls today.
Yes, I'm A-OK, but I did start developing a slight fever (100 to 101) yesterday, which has thrown me into a busy day of the patient's life today.
My morning started with pre-meds that included Benadryl, a drug that is guaranteed to knock me cold for two hours and keep me groggy for an additional two. But I multi-tasked while napping, taking in lots of antibiotics and more red blood cells.
And then it was time for a chest X-ray and more lab tests. Late in the afternoon, I finally got unleashed from my pole so that I could take my shower, do my private dance of freedom and then get in some walking on the floor.
This floor walking just isn't cutting it as a form of exercise, so I met today with my Physical Therapist (PT). It turns out that there's a daily 11 am exercise class for hematology patients. We'll also be working on developing a separate strength training program and treadmill workouts. Of course, all of this is dependent on my daily blood counts. As the PT warned, "Your strength and energy levels will outpace your blood levels."
I'm also hoping that my white counts rise by Wednesday evening so that I can attend a comedy performance at the Hope Village Comedy Center. I think the real comedy will ensue when all of these patients with poles start vying for seats. I'll post more details tomorrow, in case any of you want to join me.
Good night, friends!
Yes, I'm A-OK, but I did start developing a slight fever (100 to 101) yesterday, which has thrown me into a busy day of the patient's life today.
My morning started with pre-meds that included Benadryl, a drug that is guaranteed to knock me cold for two hours and keep me groggy for an additional two. But I multi-tasked while napping, taking in lots of antibiotics and more red blood cells.
And then it was time for a chest X-ray and more lab tests. Late in the afternoon, I finally got unleashed from my pole so that I could take my shower, do my private dance of freedom and then get in some walking on the floor.
This floor walking just isn't cutting it as a form of exercise, so I met today with my Physical Therapist (PT). It turns out that there's a daily 11 am exercise class for hematology patients. We'll also be working on developing a separate strength training program and treadmill workouts. Of course, all of this is dependent on my daily blood counts. As the PT warned, "Your strength and energy levels will outpace your blood levels."
I'm also hoping that my white counts rise by Wednesday evening so that I can attend a comedy performance at the Hope Village Comedy Center. I think the real comedy will ensue when all of these patients with poles start vying for seats. I'll post more details tomorrow, in case any of you want to join me.
Good night, friends!
Sunday, November 18, 2007
Double Mastectomies To Prevent Breast Cancer Increase
From 1998 through 2003, the rate of double mastectomies among women in the United States who had cancer diagnosed in only one breast more than doubled, according to a report in the Journal of Clinical Oncology.
"Many surgeons had noticed that more women were requesting double mastectomy for treatment of the cancer in only one breast. So, we weren't surprised by the overall trend, but we were very surprised by the magnitude," lead author Dr. Todd M. Tuttle said in an interview with Reuters Health.
What is driving this trend will require further studies, added Tuttle, from the University of Minnesota in Minneapolis. In the meantime, he advised, it is critical that physicians be aware and inform their patients that "although there may be sound reasons for undergoing double mastectomy (avoidance of future mammograms and preventing a new cancer), the procedure does not improve breast cancer survival."
The new study involved an analysis of data for 152,755 women who were diagnosed with cancer in one breast between 1998 and 2003 and entered in the Surveillance, Epidemiology, and End Results (SEER), the US National Cancer Institutes' database.
Overall, 4,969 patients elected to undergo preventative mastectomy in the other breast. The rates of the operation were 3.3 percent among women who had any surgery, including those who underwent single mastectomy or only had their tumor removed, and 7.7 percent among mastectomy patients.
The overall rate of double mastectomy - that included removal of an unaffected breast climbed from 1.8 percent in 1998 to 4.5 percent in 2003, the report indicates. Among mastectomy patients, the rate rose from 4.2 percent to 11.0 percent. These trends were noted for patients at any cancer stage and were still apparent at the end of the study period.
Characteristics of the women who underwent double mastectomy included younger patient age, non-Hispanic white race, lobular breast cancer type, and a prior cancer diagnosis, the researchers found. Large tumor size was associated with an increase in the overall rate of the procedure, but with a decrease in the rate among mastectomy patients.
"The main unanswered question from this research is: why are more women choosing to undergo double mastectomy?" Tuttle said. "For our next research project, we will interview breast cancer patients before and after surgery to determine what factors influenced their surgical decisions. We will also interview patients' surgeons to determine their advice."
AUTHOR: Anthony J. Brown, MD
SOURCE: Journal of Clinical Oncology, October 22, 2007 online.
******
"Many surgeons had noticed that more women were requesting double mastectomy for treatment of the cancer in only one breast. So, we weren't surprised by the overall trend, but we were very surprised by the magnitude," lead author Dr. Todd M. Tuttle said in an interview with Reuters Health.
What is driving this trend will require further studies, added Tuttle, from the University of Minnesota in Minneapolis. In the meantime, he advised, it is critical that physicians be aware and inform their patients that "although there may be sound reasons for undergoing double mastectomy (avoidance of future mammograms and preventing a new cancer), the procedure does not improve breast cancer survival."
The new study involved an analysis of data for 152,755 women who were diagnosed with cancer in one breast between 1998 and 2003 and entered in the Surveillance, Epidemiology, and End Results (SEER), the US National Cancer Institutes' database.
Overall, 4,969 patients elected to undergo preventative mastectomy in the other breast. The rates of the operation were 3.3 percent among women who had any surgery, including those who underwent single mastectomy or only had their tumor removed, and 7.7 percent among mastectomy patients.
The overall rate of double mastectomy - that included removal of an unaffected breast climbed from 1.8 percent in 1998 to 4.5 percent in 2003, the report indicates. Among mastectomy patients, the rate rose from 4.2 percent to 11.0 percent. These trends were noted for patients at any cancer stage and were still apparent at the end of the study period.
Characteristics of the women who underwent double mastectomy included younger patient age, non-Hispanic white race, lobular breast cancer type, and a prior cancer diagnosis, the researchers found. Large tumor size was associated with an increase in the overall rate of the procedure, but with a decrease in the rate among mastectomy patients.
"The main unanswered question from this research is: why are more women choosing to undergo double mastectomy?" Tuttle said. "For our next research project, we will interview breast cancer patients before and after surgery to determine what factors influenced their surgical decisions. We will also interview patients' surgeons to determine their advice."
AUTHOR: Anthony J. Brown, MD
SOURCE: Journal of Clinical Oncology, October 22, 2007 online.
******
Saturday, November 17, 2007
Bantering or Babbling?
I always felt a little sad when I was a little girl and saw the "No shoes, no shirt, no service" sign on diners in West Virginia. The way I figured it, if a poor bum couldn't afford shoes or a shirt, he should at least be able to get a meal.
Why do I bring this up? I'm thinking of getting a T-shirt that reads, "No shoes, no sushi, so surfing," to sum up my life for the next few months. (Well, technically, it should read "no shoelessness," but that would ruin the poetry.)
I'm developing a better understanding of this auto stem cell transplant (ASCT) process. (And, yes, even though I've received the reinfusion of my stem cells, the "process" is just beginning.) As you may recall from a former post, the ASCT is performed as a "rescue procedure" to recover from the massive doses of chemo. I thought it was a linear procedure: slam down blood with chemo, build up blood with reinfused stem cells.
In reality, the chemo is continuing to slam down the blood, even as I type this. And the stem cells are getting ready to learn to produce their own blood components at the same time. In the meantime, I have daily blood draws and receive transfusions when my counts fall below doctor-specified limits. I received my first red blood transfusion this morning.
For the next couple weeks, these daily blood count reports will provide my daily drama, so I'm going to start posting them on the blog as well. (Numbers in parentheses are normal ranges.)
WBC .4 (4.0-11)
RBC 2.3 (3.8-5.2)
HGB 8.7 (11.5-15.5)
PLT 24 (150-350)
Yesterday I experienced a few hours of the proverbial, mowed-over-by-a-fleet-of-Mac-trucks exhaustion, but today I've felt wonderfully "normal" all day.
Now I'm feeling run-of-the-mill, haven't-slept-more-than-three-hours-a-night-for-a-week tired. And guess what? That's a glorious feeling. I'm looking forward to lots of peaceful ZZZs tonight.
Why do I bring this up? I'm thinking of getting a T-shirt that reads, "No shoes, no sushi, so surfing," to sum up my life for the next few months. (Well, technically, it should read "no shoelessness," but that would ruin the poetry.)
I'm developing a better understanding of this auto stem cell transplant (ASCT) process. (And, yes, even though I've received the reinfusion of my stem cells, the "process" is just beginning.) As you may recall from a former post, the ASCT is performed as a "rescue procedure" to recover from the massive doses of chemo. I thought it was a linear procedure: slam down blood with chemo, build up blood with reinfused stem cells.
In reality, the chemo is continuing to slam down the blood, even as I type this. And the stem cells are getting ready to learn to produce their own blood components at the same time. In the meantime, I have daily blood draws and receive transfusions when my counts fall below doctor-specified limits. I received my first red blood transfusion this morning.
For the next couple weeks, these daily blood count reports will provide my daily drama, so I'm going to start posting them on the blog as well. (Numbers in parentheses are normal ranges.)
WBC .4 (4.0-11)
RBC 2.3 (3.8-5.2)
HGB 8.7 (11.5-15.5)
PLT 24 (150-350)
Yesterday I experienced a few hours of the proverbial, mowed-over-by-a-fleet-of-Mac-trucks exhaustion, but today I've felt wonderfully "normal" all day.
Now I'm feeling run-of-the-mill, haven't-slept-more-than-three-hours-a-night-for-a-week tired. And guess what? That's a glorious feeling. I'm looking forward to lots of peaceful ZZZs tonight.
Friday, November 16, 2007
Hairspray, bell bottoms, the Twist, go-go boots, The Monkees, mini-skirts, fishnet hose...
Remember when? If so, you were a child of the '60's. Were you a flower child? Here are two, Smookie and Charlene Allen, of Clan Allen fame. Charlene is one of Susan's best friends and a cousin (Nathan Allen's younger sister). Bonnie explained the hair fashion of that time to me. Tease, flips, bangs, et.al. Apparently this was quite the "in" coiffure. I remember huge aersol cans of Aqua Net hairspray and jars of Dippity-doo in our bathroom. Mom and Sis kept it next to my butch wax and Ipana toothpaste. Those were the days.
Baby, it's cold inside!
Just returned from my usual Friday errands-o-rama and listened to a voicemail from Smooky (I like the "y," dang it). She says when she's feeling perky, the Internet connection gets spotty, so she just phoned it in. Cancer Correspondent is on duty!
Here's the latest:
She received her second infusion of stem cells today, apparently STRAIGHT FROM THE FRIDGE. For some unknown reason, CoH does not have a stem cell warmer. So..imagine getting a grape Slurpee injected into your veins. Brrrr.
Heck, you'd think the Crock Pot people would come out with a model for medical use!
The blankets didn't help much, so during her infusion Susan ended up shivering like the poor little match girl in those Victorian novels. Can one drink a hot toddy during a stem cell infusion? Must Goggle for answers, stat!
Susan got a laugh from this: I read story in People magazine today about a morning show anchor who has breast cancer. She has a good attitude, but sometimes she feels sorry for herself. When this happens, her family calls her Chemo Sobby.
That is all for now.
Keep those comments coming. Smooky would prefer to skip the morphine, but she is ADDICTED to comments.
Here's the latest:
She received her second infusion of stem cells today, apparently STRAIGHT FROM THE FRIDGE. For some unknown reason, CoH does not have a stem cell warmer. So..imagine getting a grape Slurpee injected into your veins. Brrrr.
Heck, you'd think the Crock Pot people would come out with a model for medical use!
The blankets didn't help much, so during her infusion Susan ended up shivering like the poor little match girl in those Victorian novels. Can one drink a hot toddy during a stem cell infusion? Must Goggle for answers, stat!
Susan got a laugh from this: I read story in People magazine today about a morning show anchor who has breast cancer. She has a good attitude, but sometimes she feels sorry for herself. When this happens, her family calls her Chemo Sobby.
That is all for now.
Keep those comments coming. Smooky would prefer to skip the morphine, but she is ADDICTED to comments.
Greetings from Kirkland, WA!
I'm feeling much better, thanks very much for asking. H and I picked up Vicki and Lisa at SeaTac airport last night. Other than my mouth feeling like a desert, I'm feeling fine! I almost have my tastebuds back! So we're gearing up for a feeding frenzy this weekend. We are going to wine and dine Vicki and Lisa like never before. I'm so excited they're here and that I don't feel like a camel's soiled ass.
I know people have a thing against Wal-Mart for them exploiting workers so they can bring the consumer low low prices. But I got some cozy soft hats at Wal-Mart last night, and I love them. And they were $4.92. U.S. dollars. WEAK U.S. dollars.
Thanksgiving in the U.S. is coming up, and I feel like I'm missing out. I always liked Thanksgiving, especially since it's always been close to my birthday. Maybe we'll have a small Thanksgiving dinner for U.S. ex-pats in Canada.
Anyway, no worries today. Yesterday was good, and today will be even better!!!
I know people have a thing against Wal-Mart for them exploiting workers so they can bring the consumer low low prices. But I got some cozy soft hats at Wal-Mart last night, and I love them. And they were $4.92. U.S. dollars. WEAK U.S. dollars.
Thanksgiving in the U.S. is coming up, and I feel like I'm missing out. I always liked Thanksgiving, especially since it's always been close to my birthday. Maybe we'll have a small Thanksgiving dinner for U.S. ex-pats in Canada.
Anyway, no worries today. Yesterday was good, and today will be even better!!!
Thursday, November 15, 2007
A Deep Dream Life
My waking hours remain confined to my hospital bed, so I must buzz the nurses to go potty, rinse out my my mouth or take a shower, all of which take great effort. I can barely read the LA Times or a book or magazine, concentrate on a TV show or carry on a conversation. Call it chemo brain to the extreme.
But my my dream life is another story. After a round of morphine (my first and, I hope, my last), I swirled in and out of psychedelic dreams. Last night, without the aid of pain meds, I had wild adventures involving myself in boy-type underwear and nothing else with a group of pre-prepubescent Japanese-American boys in Little Tokyo. We ingeniously fashioned clothing from burlap, mud and tar. We rolled in mud and slid down bacteria-ridden water slides, all forbidden activities for patients with repressed immune systems. The finale was jumping off a roof. (All dangerous and mischievous activities, but none sexual in nature.)
Today I was convinced my dream was real. I escaped from the hosptial and looked down and saw that my leg was injured and sought help at the Pasadena Macy's. I was stylishly dressed, but had no hose on my legs or shoes on my feet. I've never been so happy to wake up and realize I was in my hospital bed watching an episode of Martha.
Martha's pumpkin center piece never looked so good.
But my my dream life is another story. After a round of morphine (my first and, I hope, my last), I swirled in and out of psychedelic dreams. Last night, without the aid of pain meds, I had wild adventures involving myself in boy-type underwear and nothing else with a group of pre-prepubescent Japanese-American boys in Little Tokyo. We ingeniously fashioned clothing from burlap, mud and tar. We rolled in mud and slid down bacteria-ridden water slides, all forbidden activities for patients with repressed immune systems. The finale was jumping off a roof. (All dangerous and mischievous activities, but none sexual in nature.)
Today I was convinced my dream was real. I escaped from the hosptial and looked down and saw that my leg was injured and sought help at the Pasadena Macy's. I was stylishly dressed, but had no hose on my legs or shoes on my feet. I've never been so happy to wake up and realize I was in my hospital bed watching an episode of Martha.
Martha's pumpkin center piece never looked so good.
Day Zero
This is the day I've been waiting for - Day Zero. I'll receive some pre-drugs this morning and then six bags of "garlic-scented" stem cells.
Yesterday afternoon was better for me, but an intermittent computer server and an intermittent stomach kept me from the blog keys. If any of you have sent me emails, I'm slow right now in returning them, so bare with me.
Yesterday afternoon was better for me, but an intermittent computer server and an intermittent stomach kept me from the blog keys. If any of you have sent me emails, I'm slow right now in returning them, so bare with me.
Wednesday, November 14, 2007
Return of the Bitch
Cancer Bitch has returned from her Midwestern tour, which began with a midnight ride to Iowa City and then continued with a daytime (mostly) ride to Ripon (pronounced RIPn), Wisconsin, where her visit was announced in the local paper as well as in the larger one in nearby Fond du Lac. Now she is home and complaining. Her hips hurt. A little. She thought a few weeks ago it was from doing lunges but now she believes (having quit doing daily lunges as part of her daily yoga, which she also quit) it has to do with long-term side effects of Terrible Taxol. Her knees hurt a little, too. She has sent a message to the oncology nutritionist and will report on her findings.
In Iowa City, besides her official business at the NonfictioNow conference, she met with old Red (or Pink) friends from the Iowa Socialist Party, S and R. S is a longtime temporary worker in the Iowa City public library, and his house with R is filled with library discards. It is filled with many other books and papers and with cats. There are also more than 50 boxes of tea. There's a little cancer corner, and from there she was offered a number of items. She took Rose Kushner's "Breast Cancer: A Personal History and Investigative Report," which Kushner wrote partly because she couldn't find any books about breast cancer. How times have changed in 30 years, and partly because of Kushner's ground-breaking book. On the one hand, it's sad that the library discarded Kushner's book, but on the other, it must mean that many other books on breast cancer are in the library and seem more relevant to the librarians and patrons.
Kushner was a member of the Ashkenazim (European) Jewish folk, and she died in 1990, of breast cancer that metastasized.
Your Cancer Bitch is way behind in everything because of her trips, and she leaves Thursday for a nearby university, where she will lead a workshop on writing about your cancer. All fun and games, tra-la.
In Iowa City, besides her official business at the NonfictioNow conference, she met with old Red (or Pink) friends from the Iowa Socialist Party, S and R. S is a longtime temporary worker in the Iowa City public library, and his house with R is filled with library discards. It is filled with many other books and papers and with cats. There are also more than 50 boxes of tea. There's a little cancer corner, and from there she was offered a number of items. She took Rose Kushner's "Breast Cancer: A Personal History and Investigative Report," which Kushner wrote partly because she couldn't find any books about breast cancer. How times have changed in 30 years, and partly because of Kushner's ground-breaking book. On the one hand, it's sad that the library discarded Kushner's book, but on the other, it must mean that many other books on breast cancer are in the library and seem more relevant to the librarians and patrons.
Kushner was a member of the Ashkenazim (European) Jewish folk, and she died in 1990, of breast cancer that metastasized.
Your Cancer Bitch is way behind in everything because of her trips, and she leaves Thursday for a nearby university, where she will lead a workshop on writing about your cancer. All fun and games, tra-la.
Tuesday, November 13, 2007
Grieving the loss of "Normal"
In 1969 Elizabeth Kubler-Ross published her classic book, "On Death and Dying". I was required to read it as a class assignment in nursing school. The book outlined the five stages of grief and loss of someone who is dying. In later years, these stages of grief and loss became known to be associated with other types of loss.
I talk to so many who tell me that the day of their cancer diagnosis was the day their "normal" life ended. I've recognized these same stages as we grieve the loss of our "normal" lives after a cancer diagnosis. I think many of us have gone through these stages as we've relinquished our before-cancer normal lives. I know I did.
• Denial and isolation: "This is not happening to me." We feel detached, we can't assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist's waiting room knowing that though I felt great, I was now a "cancer patient". I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.
• Anger: "How dare God do this to me." I never felt "Why me?", but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.
• Bargaining: I'll eat right, I'll do chemotherapy, I'll do surgery, I'll quit smoking, I'll exercise...just let me live long enough to raise my kids. I just want to see them graduate from high school.
•Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I'm afraid of the future, I'm afraid of tomorrow. I'm so sad.
•Acceptance: I'm here now, at acceptance, but it was a very long and hard road. And I guess since I've almost achieved what I'd "bargained" for, maybe it's easier for me than for others. I've been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God's answer is "no" to many prayers. I accept that there is much I don't and can't know from my perspective in this here and now.
But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope...greater than the hope of surviving my cancer.
I talk to so many who tell me that the day of their cancer diagnosis was the day their "normal" life ended. I've recognized these same stages as we grieve the loss of our "normal" lives after a cancer diagnosis. I think many of us have gone through these stages as we've relinquished our before-cancer normal lives. I know I did.
• Denial and isolation: "This is not happening to me." We feel detached, we can't assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist's waiting room knowing that though I felt great, I was now a "cancer patient". I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.
• Anger: "How dare God do this to me." I never felt "Why me?", but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.
• Bargaining: I'll eat right, I'll do chemotherapy, I'll do surgery, I'll quit smoking, I'll exercise...just let me live long enough to raise my kids. I just want to see them graduate from high school.
•Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I'm afraid of the future, I'm afraid of tomorrow. I'm so sad.
•Acceptance: I'm here now, at acceptance, but it was a very long and hard road. And I guess since I've almost achieved what I'd "bargained" for, maybe it's easier for me than for others. I've been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God's answer is "no" to many prayers. I accept that there is much I don't and can't know from my perspective in this here and now.
But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope...greater than the hope of surviving my cancer.
I feel lousy, but I made it!
This course has to be the most toxic yet. My eyes, throat and mouth are burning. I feel nauseated and am throwing up repeatedly. But this too shall pass.
Tomorrow is another "day off" to recover before we start reinrfusing my stem cells on Thursday and Friday.
Tomorrow is another "day off" to recover before we start reinrfusing my stem cells on Thursday and Friday.
Monday, November 12, 2007
Smiley Faces
This sucks. I told Henry that I'm feeling so much pain that I feel like I'm paying for all my sins. My throat is swollen inside so I can hardly swallow, every joint in my body hurts (Tylenol doesn't do shit for me), and well, the weather sucks. Can't blame chemo for the weather though.
Chloe is drawing in the "Time for Me" activity book for kids with parents with cancer. She drew a smiley face and arms and legs on the cartoon of the tumor and asked me if that made me happy, if it made me felt better. Yes, Chloe, it does. So now she's filling every single page with smiley faces with arms and legs. Some of them have hair too.
Speaking of hair, Chloe asked me when I'm going to fix mine. Kids are awesome. I love their perspective on things.
The other night, when the kids came home from being at their grandparents' house, they burst in the door and shouted, "Mama! Mama!" Mylo ran by all his birthday toys, ran up the stairs, and hopped into bed with me and started snuggling. Then Chloe followed. That made me feel both happy and sad.
Chloe is drawing in the "Time for Me" activity book for kids with parents with cancer. She drew a smiley face and arms and legs on the cartoon of the tumor and asked me if that made me happy, if it made me felt better. Yes, Chloe, it does. So now she's filling every single page with smiley faces with arms and legs. Some of them have hair too.
Speaking of hair, Chloe asked me when I'm going to fix mine. Kids are awesome. I love their perspective on things.
The other night, when the kids came home from being at their grandparents' house, they burst in the door and shouted, "Mama! Mama!" Mylo ran by all his birthday toys, ran up the stairs, and hopped into bed with me and started snuggling. Then Chloe followed. That made me feel both happy and sad.
Did I write too soon yesterday? (or day bebore)
Dangerously low blood pressure last nigt. Nausea and repeated throwing up. Flu-like sypmtoms.
But I'm almost done. I can do this. Thank you again for all of your support.
Didn't sleep a wink last night. It's 8:40 am, so maybe I'll catch a wink now. Hard to type.
But I'm almost done. I can do this. Thank you again for all of your support.
Didn't sleep a wink last night. It's 8:40 am, so maybe I'll catch a wink now. Hard to type.
Sunday, November 11, 2007
The Velvet Hammer
I think the velvet hammer that someone (Mrs. Duck?) was hoping and praying for has come to pass. My worst complaint so far is constant drowsiness, but that's to be expected with the Dilantin, Atavan and Benadryl, all of which have the sleepy side effect. Factor in a buzzing IV and bloated bladder requiring ten potty trips a night, and I wake up ready to hit the hay. Oh, and not to mention that my blood counts are starting to dive.
I'm finished with the three-day course of Carmustine and will move on today to Etoposide before a much-needed day off tomorrow. I'm 3/5 of the way done!
I'm finished with the three-day course of Carmustine and will move on today to Etoposide before a much-needed day off tomorrow. I'm 3/5 of the way done!
Friday, November 9, 2007
Beware of Patient
Great! I have the dreaded yellow warning banner outside my room. Today I had low blood pressure - a common side effect of the chemo. Combine that with the pre-meds-induced drowsiness and we have a whole lot of woozy wobblin' goin' on.
And, tomorrow, during my Benadryl and Atavan-induced slumber, a staff member will be sitting with me in my room for at least four hours, just to make sure I don't try to do anything wild and crazy (like go to the bathroom).
Everything Grows
When I first started this adventure, you may recall that we had to remove the ailing, back-yard oak tree that covered up a multitude of sins. Among those sins were a chain-link fence, clear sight of our neighbor's back patio, a half-dozen scrawny Nandinas that failed to thrive under the oak's darkness and a tall, branchless tree that looked more like a bamboo pole.
I couldn't stand the sight of that overgrown sapling and instructed the gardeners to yank her out. "No, Mrs. Susan," they pleaded with me. "It is not dead yet. Just give it time and you will see new growth because the tree can now see the light." I responded, "Grumble, grumble."
Two weeks went by, and I still saw no signs of growth. I asked them once more to remove the sickly sapling, but, again, they refused.
A week later, I started to notice new shoots of limbs and leaves. A month later, the tree was green all over, and it continues to grow.
The offensive tree is now lush with foilage.
I can't help but make comparisons with my own scalp. Within months, I went from bald to budding to bountiful swirls of curls. It's the circle of hair life. I call it my "kewpie doll" look, but one of my friends says I have a "faux hawk," kind of like a mohawk wanna' be.
I'll soon lose my hair once again, thanks to the massive doses of chemo prior to the "rescue procedure." I'll go from bountiful to bald to budding and back to bountiful because, as everyone knows, everything grows.
The offensive scalp is now covered with
lush swirls and curls.
I couldn't stand the sight of that overgrown sapling and instructed the gardeners to yank her out. "No, Mrs. Susan," they pleaded with me. "It is not dead yet. Just give it time and you will see new growth because the tree can now see the light." I responded, "Grumble, grumble."
Two weeks went by, and I still saw no signs of growth. I asked them once more to remove the sickly sapling, but, again, they refused.
A week later, I started to notice new shoots of limbs and leaves. A month later, the tree was green all over, and it continues to grow.
The offensive tree is now lush with foilage. I can't help but make comparisons with my own scalp. Within months, I went from bald to budding to bountiful swirls of curls. It's the circle of hair life. I call it my "kewpie doll" look, but one of my friends says I have a "faux hawk," kind of like a mohawk wanna' be.
I'll soon lose my hair once again, thanks to the massive doses of chemo prior to the "rescue procedure." I'll go from bountiful to bald to budding and back to bountiful because, as everyone knows, everything grows.
The offensive scalp is now covered withlush swirls and curls.
Thursday, November 8, 2007
Day Zero
Several people have called and asked me what my schedule is this week, so I thought I'd post it for all to see:
Wednesday 11/07/07 (Dilantin*) Check in for hydration
Thursday 11/08/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Firday 11/09/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Saturday 11/10/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Sunday 11/11/07 (Benadryl Atavan, Zofron)* Etoposide
Monday 11/12/07 DAY OFF
Tuesday 11/13/07 (Benadryl, Atavan, Zofron)* Cyclophosphamide
Wednesday 11/14/07 DAY OFF
Thursday 11/15/07 (Pre-meds) Reinfusion of Neupogen-primed peripheral stem cells
Friday 11/16/07 (Pre-meds) Reinfusion of Neupogen-primed periipheral stem cells
Tuesday 11/20/07 Begin Neupogn injections for white cell count.
Day Zero refers to the day I receive my stem cells on 11/15/07. Days prior to the reinfusion are counted with negative numbrs. (e.g. Thursday, 11/08/07, is Day -1; Friday, 11/09/-7, is Day -2, etc.) After the reinfusion, we start counting with positive numbers. stem cells is returned is Day 1 and we continue numbering the days after that. (e.g. Friday, 11/16/07, is Day 1; Saturday, 11/17/07, is day 2, etc.)
I hope that this post doesn't put you to sleep faster than the Benadryl coursing through my veins before the chemo. It's not even 10 pm, but I can't keep my eyes open any longer.
Wednesday 11/07/07 (Dilantin*) Check in for hydration
Thursday 11/08/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Firday 11/09/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Saturday 11/10/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Sunday 11/11/07 (Benadryl Atavan, Zofron)* Etoposide
Monday 11/12/07 DAY OFF
Tuesday 11/13/07 (Benadryl, Atavan, Zofron)* Cyclophosphamide
Wednesday 11/14/07 DAY OFF
Thursday 11/15/07 (Pre-meds) Reinfusion of Neupogen-primed peripheral stem cells
Friday 11/16/07 (Pre-meds) Reinfusion of Neupogen-primed periipheral stem cells
Tuesday 11/20/07 Begin Neupogn injections for white cell count.
Day Zero refers to the day I receive my stem cells on 11/15/07. Days prior to the reinfusion are counted with negative numbrs. (e.g. Thursday, 11/08/07, is Day -1; Friday, 11/09/-7, is Day -2, etc.) After the reinfusion, we start counting with positive numbers. stem cells is returned is Day 1 and we continue numbering the days after that. (e.g. Friday, 11/16/07, is Day 1; Saturday, 11/17/07, is day 2, etc.)
I hope that this post doesn't put you to sleep faster than the Benadryl coursing through my veins before the chemo. It's not even 10 pm, but I can't keep my eyes open any longer.
*These are pre-meds that counter the side effects of the chemo.
How It's Looking
I had round 5 of chemo yesterday--a new chemo cocktail. Docetaxel (aka Taxotere) and Capecitabine. Docetaxel is administered through an IV, and Capecitabine is a pill dosage I have to take twice a day. Here's picture of my bruise from my IV yesterday. I didn't put enough pressure on the vein when the nurse took out the IV, so I got a nasty swollen bruise:
So far, I've been feeling okay, though there was a woman in the chemo room with me who was getting her own dose of Docetaxel, which she started a few cycles ago. She was telling me about all the problems she's had since starting it, which wasn't that reassuring. But the nurse said that everyone's different, so we'll see. The new fun side effects I can expect are peripheral neuropathy, which is numbness and tingling in the hands and feet, and body aches and pains. The nausea should be less or even non-existent, which is good. But my taste buds are already back to flat and metallic, which sucks.
H and I are very concerned and have our doubts and fears about radiation. We're supposed to meet the radiation oncologist soon. We have lots of questions, mainly which point to how necessary this is, especially given that if I were to get radiation, I would be doing it before surgery, so how do we even know that it's necessary assuming that the surgery would take care of getting rid of the cancer. Anyway, we're eagerly waiting the appointment. It's an odd thing because the nurse and the oncologist were reassuring us that with the radiation, we were getting the "deluxe package," as if this were some sort of resort vacation deal.
The nurse also mentioned that I'm "lucky" to be getting in on the reconstruction list, because there's such a wait list for those wanting reconstruction. But my group--I guess that would be women who have the hardcore yet operable breast cancer--is the only one that's being accepted onto the list without waiting. I told the nurse that I felt so special. She laughed.
And here's the news from the ultrasound I had last week: "There has been a moderate decrease in the size of the multifocal carcinoma in the superior right breast. Significant residual disease persists." So mostly good news, some sucky news. Specifically: "One lesion measures 1.1 x 0.4 cm. . .this was measured 1.3 x 1 cm in August. A second lesion measures 0.9 x 0.5 cm. This was previously measured at 1.3 x 1.4 cm. A third lesion measures 0.7 x 0.6 cm, and this has not changed."
I don't know if this means anything...but I just gave Chloe a book that my therapist said I should give to her called "Time for Me: An activity book for kids when someone in the family has cancer." She went right to the page called "What is radiation" and colored green all over it. Green, in aura therapy, means healing I think.
Anyway, I fallen into not caring about what I'm eating (I'm a Weight Watchers lifetime member, which is probably put into jeopardy since I stopped going after my diagnosis in July. I've become accustomed to what I was putting in my mouth in terms of calories, fat and all that). But now, I'm trying to get all belly fatalicious so I'll have bigger jugs when reconstruction time happens--but nothing is changing. My doctor beamed and said, "Weight is maintaining. Good job." I'm like--just fucking great. Now that I want massive girth, it's not happening. How cruel can this world possibly be, man???
As far as my appearance go, I've totally stopped putting on makeup or giving a crap. I pretty much go out bald; it comes in handy sometimes. Like when I'm on a crowded bus and want to sit down. I whip off my hat, and people get out of my way. The perks of looking seriously ill.
So that's the latest in Brandy's cancerland. Life goes on.
So far, I've been feeling okay, though there was a woman in the chemo room with me who was getting her own dose of Docetaxel, which she started a few cycles ago. She was telling me about all the problems she's had since starting it, which wasn't that reassuring. But the nurse said that everyone's different, so we'll see. The new fun side effects I can expect are peripheral neuropathy, which is numbness and tingling in the hands and feet, and body aches and pains. The nausea should be less or even non-existent, which is good. But my taste buds are already back to flat and metallic, which sucks.
H and I are very concerned and have our doubts and fears about radiation. We're supposed to meet the radiation oncologist soon. We have lots of questions, mainly which point to how necessary this is, especially given that if I were to get radiation, I would be doing it before surgery, so how do we even know that it's necessary assuming that the surgery would take care of getting rid of the cancer. Anyway, we're eagerly waiting the appointment. It's an odd thing because the nurse and the oncologist were reassuring us that with the radiation, we were getting the "deluxe package," as if this were some sort of resort vacation deal.
The nurse also mentioned that I'm "lucky" to be getting in on the reconstruction list, because there's such a wait list for those wanting reconstruction. But my group--I guess that would be women who have the hardcore yet operable breast cancer--is the only one that's being accepted onto the list without waiting. I told the nurse that I felt so special. She laughed.
And here's the news from the ultrasound I had last week: "There has been a moderate decrease in the size of the multifocal carcinoma in the superior right breast. Significant residual disease persists." So mostly good news, some sucky news. Specifically: "One lesion measures 1.1 x 0.4 cm. . .this was measured 1.3 x 1 cm in August. A second lesion measures 0.9 x 0.5 cm. This was previously measured at 1.3 x 1.4 cm. A third lesion measures 0.7 x 0.6 cm, and this has not changed."
I don't know if this means anything...but I just gave Chloe a book that my therapist said I should give to her called "Time for Me: An activity book for kids when someone in the family has cancer." She went right to the page called "What is radiation" and colored green all over it. Green, in aura therapy, means healing I think.
Anyway, I fallen into not caring about what I'm eating (I'm a Weight Watchers lifetime member, which is probably put into jeopardy since I stopped going after my diagnosis in July. I've become accustomed to what I was putting in my mouth in terms of calories, fat and all that). But now, I'm trying to get all belly fatalicious so I'll have bigger jugs when reconstruction time happens--but nothing is changing. My doctor beamed and said, "Weight is maintaining. Good job." I'm like--just fucking great. Now that I want massive girth, it's not happening. How cruel can this world possibly be, man???
As far as my appearance go, I've totally stopped putting on makeup or giving a crap. I pretty much go out bald; it comes in handy sometimes. Like when I'm on a crowded bus and want to sit down. I whip off my hat, and people get out of my way. The perks of looking seriously ill.
So that's the latest in Brandy's cancerland. Life goes on.
Countdown
I've just returned from a stroll without the pole and am savoring my last 20 minutes of untethered freedom. My nurse, Christina, will come at 10:30 am to hook me up for my pre-meds. I should be conked out by 10:31 and will likely sleep through the four-hour infusion of Carmustine. I wonder if the staff will still mistake me for a visitor instead of a patient when I wake up.
I have a fabulous, Central-Park-style view from my window; my favorite patient care assistants (PCAs) and nurses have been taking good care of me and I'm learning how to survive on "spa" food. (For breakfast, you can't go wrong with a bowl of Cheerios, milk and banana, the only fresh fruit I'm allowed.) So far, so great.
I have a fabulous, Central-Park-style view from my window; my favorite patient care assistants (PCAs) and nurses have been taking good care of me and I'm learning how to survive on "spa" food. (For breakfast, you can't go wrong with a bowl of Cheerios, milk and banana, the only fresh fruit I'm allowed.) So far, so great.
Wednesday, November 7, 2007
Housekeeping
Calling Susan:
Please call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for me by name or Room 5111.
I'll have my cell phone with me to make outgoing long distance calls and will check for messages, but I don't plan to use the cell for incoming calls.
Visiting Susan:
Yes, I can have visitors. Click here for the City of Hope guidelines. You'll find me in Room 5111 in the Helford Hospital (aka the "new" hospital).
If you can't reach me before a visit, you may want to call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for the RN or PCA on duty for Susan Carrier. She'll be able to tell you if I'm awake or if I've already had a barrage of visitors.
Be prepared to wash up and wear a CoH-provided mask and gloves. And if you think that you may be coming down with a cold or have been recently exposed, then it's best to save your visit until the germs have settled down.
Sending Mail to Susan:
You may send mail to: City of Hope, Helford Hosptial, Room 5111, 1500 East Duarte Road, Duarte, California 91010 ATTN: Susan Carrier OR at my home address at 1338 Hull Lane, Altadena, CA 91001.
Preparing Food for George and Cindy:
Food for the fam. will be greatly appreciated. If you'd like to drop off food, please call George at work at 213-253-7333 on weekdays or at 626-797-1897 on weekday nights and weekends to make arrangements.
Preparing Food for Susan:
I'm now on a special low-bacteria diet, so food from the outside world is forbidden. Believe me, I'd kill right about now for anything that doesn't come served on a tray. (Yep, I'm officially sick of "spa" food already, and I've been here less than four hours.) And the second that I get the word that I'm allowed smuggled-in food, I'll pay top dollar to anyone who brings in a kilo of chocolate-orange gelato from Bulgarini in Altadena.
Please call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for me by name or Room 5111.
I'll have my cell phone with me to make outgoing long distance calls and will check for messages, but I don't plan to use the cell for incoming calls.
Visiting Susan:
Yes, I can have visitors. Click here for the City of Hope guidelines. You'll find me in Room 5111 in the Helford Hospital (aka the "new" hospital).
If you can't reach me before a visit, you may want to call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for the RN or PCA on duty for Susan Carrier. She'll be able to tell you if I'm awake or if I've already had a barrage of visitors.
Be prepared to wash up and wear a CoH-provided mask and gloves. And if you think that you may be coming down with a cold or have been recently exposed, then it's best to save your visit until the germs have settled down.
Sending Mail to Susan:
You may send mail to: City of Hope, Helford Hosptial, Room 5111, 1500 East Duarte Road, Duarte, California 91010 ATTN: Susan Carrier OR at my home address at 1338 Hull Lane, Altadena, CA 91001.
Preparing Food for George and Cindy:
Food for the fam. will be greatly appreciated. If you'd like to drop off food, please call George at work at 213-253-7333 on weekdays or at 626-797-1897 on weekday nights and weekends to make arrangements.
Preparing Food for Susan:
I'm now on a special low-bacteria diet, so food from the outside world is forbidden. Believe me, I'd kill right about now for anything that doesn't come served on a tray. (Yep, I'm officially sick of "spa" food already, and I've been here less than four hours.) And the second that I get the word that I'm allowed smuggled-in food, I'll pay top dollar to anyone who brings in a kilo of chocolate-orange gelato from Bulgarini in Altadena.
Comment(ary)
I'm now kicking back in Room 5111 at Hotel Hope. I thought I'd sneak in a quick post before the nurses come with my pre-meds, which will likely knock me out for a few hours.
Currently, I have to approve a comment before it's posted. Since hours may now slip by between email checks, I've decided to abandon the approval process. Your posts will automatically appear, immediately after you've verified the random mix of letters that appear on your screen.
Some of you have subscribed to the notification service for new blog postings. A few have hit "reply" with your comments. These messages will come to me, but will not appear on the blog. If you'd like your comment to appear (and I love the comments on the blog so that I have a permanent record of your lovely thoughts), please click on the blog site and then add the comment.
That's all, folks!
Currently, I have to approve a comment before it's posted. Since hours may now slip by between email checks, I've decided to abandon the approval process. Your posts will automatically appear, immediately after you've verified the random mix of letters that appear on your screen.
Some of you have subscribed to the notification service for new blog postings. A few have hit "reply" with your comments. These messages will come to me, but will not appear on the blog. If you'd like your comment to appear (and I love the comments on the blog so that I have a permanent record of your lovely thoughts), please click on the blog site and then add the comment.
That's all, folks!
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