Sunday, December 30, 2007
What If We Have a Happy, Healthy New Year?
My mind raced and, for the first time in years, I felt giddy about the new year. I've signed up for Terrie Silverman's Creative Rites classes, which begin January 10, and plan to start work on that one-woman show, "Big C, Little C." I'm ready to take on some marketing projects in the energy/water efficiency field. I've got some freelance writing projects in the works.
And after nearly a year of being the grateful recipient of abundant love, support and friendship that's been demonstrated in a thousand thoughtful ways, I'm giddy about the prospect of being able to give more than I receive this year.
The possibility of feeling good, doing good work and accomplishing good things is enough to make anyone feel giddy.
But every so often the giddiness is replaced with nervous butterflies in my stomach - the ones that flutter around and whisper, "What if you relapse?" "What if you eventually need a donor stem cell transplant?" "What if you develop myelodysplasia (the chemo-induced cancer that was a concern)?" Even writing about these "What ifs" makes me want to throw up, because, yes, they are in the realm of possibility.
I figure that two can play at the "what if" game. "What if I find an agent and a publisher for one of my book proposals?" "What if I publish an article in Dwell Magazine?" "What if I spend the entire year in remission?" "What if my blood counts continue to rise to normal levels?" These are also in the strong realm of possibility. (And instead of nervous butterflies, I get giddy thinking about these things.)
So what's it gonna' be? What if we ALL have a happy, healthy New Year?! I'll drink to that!
PS...
So, um, don't know if it's possible for you to bring back pretzel dough or something....hm....
love,
b
Dear Dad,
So when you and Mom come here, the list so far is:
Hartley's BBQ chips (don't get more than one or two bags, because they take up a lot of room in your suitcase. And when Vicki and Lisa came here, some of the bags burst open from the air pressure)
Slim Jims (not the super long ones, but the short kind that come in the red box, if they still make those....I haven't had those in years)
Cowtails (do they still make those too? I used to get them at the Little Store)
I think that's it for now for Brandy. You know what I hate? When people refer to themselves in the third person. It's almost as bad as writing a blog entry in epistolary form, but sometimes, you gotta do weird things.
Love,
b
Saturday, December 29, 2007
God Box
Boxes are great. They have a purpose (you can put stuff in them for all sorts of reasons), and they've got four sides, well, actually, 8 if you count both the inside and outside. So if you see a cool, cheap box, even if it's lying on the street, save it for me!
I think I was also inspired by another cancer blog entitled "DIY not die," located on my blogroll on the right side. There's something very meditative about crafting. I'm far from being the expert craftsters that I read about online and in books (two books I'm currently loving are Bazaar Bizarre and Supercrafty), but it's fun to think about crafts and check out what other people are doing. It's about creating and celebrating things that are thrown away and thought of as trash and bringing new life to them. Kinda like what this whole cancer crap is all about. Taking crap and creating afterlives.
Year End Wrap-Up & 2008 Goals
2008 Goals are:
- Live to see 2009
- Increase my energy level (start doing more cardio)
- Spend more time with my family
- Increase awareness about organ donation and defeat the stigma associated with lung cancer
Thursday, December 27, 2007
Testing.......
Even 6 1/2 years out, CT scans make me uncomfortable. CT scans make us all feel vulnerable, they keep us in limbo.
I'm in the cancer community now and talk to cancer patients daily. I am familiar with cancer recurrences. I have relationships with people who are dying of cancer. Cancer is a sneaky and vicious disease. Once in awhile I hear of a cancer patient who has a recurrence after 5 years. I know too much to become too complacent about cancer.
My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now. Just now one is elevated, just a bit, for the first time. So I decided to go ahead and schedule the scan.
It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond oncology appointments and cancer follow-up testing.
It isn't as bad for me as it used to be. I used to be terrified of impending CT results. But CT scans still make me edgy.
I hope someday someone will use the word "cure" in regards to my cancer. That I will be able to stop being tested for cancer. A friend of mine is 83, she survived colon cancer diagnosed at age 40. She just quit her annual colonoscopies at age 80. Forty years of annual colonoscopies.
The testing goes on, and on, and on.....
Going UP!
WBC 2.9 (4.0-11)
RBC 2.62 (3.8-5.2)
HGB 8.9 (11.5-15.5)
PLT 24 (150-350)
Day 42, Thursday, December 27
WBC 4.3 (4.0-11)
RBC 2.54 (3.8-5.2)
HGB 8.6 (11.5-15.5)
PLT 47 (150-350)
I'm normal! Well, at least my white blood counts are in the normal range. I'm even healthy enough to board a plane and am planning a trip to SF next week.
My red blood and hemoglobin counts took another baby step back, but I'm still able to do a lot with a little.
The best news is that the platelets rose from 24 to 47 without the help of a transfusion. I can't tell you how happy I am to be in the platelet production business.
Since it looks as though I'm out of the transfusion woods, I'm scheduled to have the surgeon remove my Hickman catheter in two weeks. I'll be wireless for the first time in nine months.
Positive Vibes (and a monster bag of chips) for the New Year
We have some exciting plans for 2008, particularly for what's going to happen post-surgery. We're looking forward to a gourmet kayaking weekend trip in August with friends and family. I'm pretty stoked for that.
And here's another good sign...as you may recall, I previously posted about a favorite food of mine from home: Hartley's bbq chips. Today, my friend Vicki sent me this article about how a new tradition is starting at home: dropping a huge bag of Hartley's on New Year's eve, like the big apple in Times Square. This is quite possibly the most freakin' awesomest thing I heard in a long time. No longer will Central Pennsylvanians have to flock to Harrisburg to witness a huge strawberry dropping at the stroke of midnight (in Strawberry Square). Now we have our very own big something falling on the countdown to the new year! Another tradition in my hometown on New Year's is to shoot rifles--one shot to take the old year out, another to bring in the new year. So picture this: a big-ass bag of chips dropping to the sound of gunshots. Beautiful.
Wednesday, December 26, 2007
Theology: a Guest Blog
We were driving home from Young's (Their real motto: "The Dairy with Cows") after a meeting with Julie, Josh and the three kids, and were discussing Julie's dying father, which led to a discussion of God. After a brief back-and-forth, i.e., what is God? and Is god a person? Is god dead? Jen answered obliquely: some people think God is an idea, etc. There was also a tie-in with the spiritual, recently viewed on a 1930s Disney animation "Who built the ark? Noah, Noah" and that God told him to build an ark. Then Joseph considered the whole discussion, and finally said, "I know what god is: he is a tiny person that lives inside your heart and whispers to you; god is a whisper in your heart." Then, there was more discussion about whether God was on the ark with Noah, or whether he drowned in the flood. Finally, Joseph said, "I think God died a long time before Noah was born, and that he was a ghost who lived inside Noah, and that way he was on the Ark, but didn't take up any space because he was inside Noah." Later the next day, I asked Joseph whether he had ever discussed God at school or anywhere else. He said "No, I have that same whisper inside my heart."
Tuesday, December 25, 2007
Merry Christmas
I am putting batteries in every noise making toy made this year and is every Baby doll called Arial or the Bratz. I do realize that I am turning into my parents when I start looking forward to the children wearing themselves out on Christmas and taking a nap (so I can take a nap).
What a day, glad to be here.
Monday, December 24, 2007
Christmas Milestones
It was 22 years ago when I celebrated Christmas Eve with them for the first time. I felt a little bit overwhelmed then. I'd come from a family where it was just mom, dad and the kids for holidays in our home. Quiet, dignified celebrations.
My husband's big Polish family has always celebrated Christmas on Christmas Eve at his parent's house. Lots of people are there.....his parents and all of their kids and their grandkids, now even the grandkid's kids--and all of the spouses. Anyone else who happens to need a place to celebrate is welcomed too, even if they are no relation at all. Tons of food, tons of decorations, Santa comes, the kids sometimes do skits, sometimes you have to sing a Christmas carol to the crowd before Santa will give you your present, sometimes there's a white elephant giveaway. Kind of corny stuff. Kind of loud, kind of overwhelming. At least it was for me the first many years I spent the holiday at their house. It took me some getting used to.
But this year was my 22nd Christmas celebration with them. I don't feel like an in-law anymore. I am a daughter and a sister, "in-law" doesn't seem to apply nowadays. I kind of appreciated the corny stuff, the crowd, the overabundence.......and even the noise.
I talked to adults during the evening who now have their own small children. I remembered these same adults as toddlers when I first met them 22 Christmases ago. My husband and I were not yet married and I had no children the first time I spent the holiday with them. Two children and a few adults have died since I've been a part of the family. I remembered those who were not there this year especially.
This year I truly celebrated all of them who have become a part of my life over the last few decades. I celebrated the life changes we've all shared through the years, the support they have been to myself and to my own family, the support I hope I've provided to some of them.
They've started something new this year, Sharing the Oplatek, a Polish tradition. White wafers, like those used for Holy Communion, are shared with each person present. We all broke off a piece of each other's wafer as we wished each other a Merry Christmas. It was really a sweet moment.
This year especially I felt truly proud to be a part of the history of this family, to belong and to be a part of their lives and their traditions. I appreciated that I've had all of these years to share with them. All of the milestones.
FAQ's about BAC and Lung Transplant (patients point of view)
Disclaimer: These are thoughts and suggestions provided by myself and others that have experienced cancer (i.e. BAC) and also undergone organ transplantation (i.e. lung transplant).
BAC (Lung Cancer) FAQ's:
- BAC (Bronchioloalveolar Carcinoma) suck!!!
- BAC is a type of lung cancer often found in non-smokers
- For many diagnosed with BAC there is no way of EVER knowing how the carcinoma developed, since it is often diagnosed at such a late stage. (for me I was diagnosed at stage 4)
- When you are diagnosed with cancer or other life threatening conditions you need to study and read medical white papers so the highly lettered doctors don't try to talk over your head. An example of words they might use that are suggestive until you really understand the true medical meaning as it applies to your condition are stage 4, metastasized, spread... I was stage 4 b/c my BAC non-small cell cancer had spread or metastasized to both lungs, in this case you don't want it to spread but the spreading was okay b/c it was contained in my lungs and I had no lymph node involvement.
- Chemo (chemotherapy) is overrated as far as making you deathly ill. Don't get me wrong it is unpleasant but you more than likely won't be vomiting bucks or be totally out of it. The new Chemo is often time targeted for your specific cancer type based on its protein signature which means it focus on a specific area of the body. You will also be given pre-meds before chemo starts to help with nausea, you will also be given plenty of snacks during your chemo infusion (mmm MMMM mmm snacks)
- Keep hard candy on hand and suck on it when your IV is flushed with Saline and Heparin as they will leave a nasty taste in your mouth and the candy will of-set that taste.
- If you can get a port inserted in your chest for chemo, and blood draws it will make life much simpler; your veins will start to get worn out from the chemo eventually and the port again will make life simpler.
- Flush your port at least every three weeks or as the doctor orders.
- Eat what you can the newer chemo does not really alter the taste of food contrary to popular opinion.
- Stay active work-out, walk, swim, hit the whirl pool, and get a massage as these activities help push the chemo (Ratt poison) through your system and will help with the joint/muscle pain you are going to experience.
Transplant FAQ's:
- TRANSPLANT IS NOT A CURE; you are trading a terminal condition for MANY other conditions that can be monitored through life style changes (i.e. exercise, diet) and medication.
- Some conditions that one can expect with lung transplant are; diabetes, osteoporosis, weight fluctuation, muscle mass loss, mood swings, fatigue, various respiratory viruses..... BUT YOU ARE ALIVE keep that in mind.
- Your children / or younger relatives will be your greatest inspiration to fight on and do well with the transplant but they can also put you in the hospital as they will unknowingly give you little presents (germs and bugs) they get from daycare.
- YES, they transplant was painful the first two days hurt like *&^% *&^%; it helps to be in shape, work on your abs, back upper and lower, possibly learn some yoga or stretching before hand to concentrate on your posture, work on your legs too as the meds will quickly eat away your leg muscles.
- Wear your mask and get T-shirts made up to answer the ignorant questions you will get from people wondering why you have on the mask.
- It will probably take a good year to recover from the transplant.
- I started back to work after 6 months but that might have been to soon b/c a week after going back to work I was back in the hospital for two weeks with CMV
- Watch your sugar intake after transplant b/c the high doses of steroids will alter your blood chemistry and you will soon develop steroid induced diabetes.
- The diabetic stomach shoots don't hurt remember all you have been through they are a piece of cake.
- Get your port removed if it is accessed alot it could be a source of infection; it will be accessed alot b/c you will have blood drawn several times a week. Ask for a picc line so you don't have to get stuck so much.
- While out of work recovering find something to do to stimulate your mind as you are not going to sleep much because the medicine won't allow it.
- Check the $4 med list that Wal-mart has b/c some of the meds you will need can be purchased there rather than paying an arm and a leg at your local chain pharmacy.
More bullet points to come as I remeber more stuff to add (prednisone brain)
Sunday, December 23, 2007
Chloe's Caroling
And here's her improv:
I'm missing my family very much this Christmas season. I saw everyone yesterday over the webcam. My grandparents, aunts and uncles, cousins, niece and nephew, sister, and my parents all said hello. One by one they sat down at the computer and said they missed and loved me. Chloe charmed them with some songs and counting from 1-10 in Mandarin and Vietnamese. Mylo didn't really want to talk, as he's still recovering from pneumonia and understandably moody. But I was happy to see everyone, even though it made me feel a bit sad.
Later in the evening, we had dinner with Henry's parents. I feel really lucky to have them, and his sister and her family, around. At a time when I'm missing home, I also feel so blessed to have such wonderful in-laws. Being in Vancouver is not like being in Mifflintown during Christmas, but it's my home as well.
Saturday, December 22, 2007
What's the Mutter?
I caught myself doing it again the other day - in broad daylight and in public. I was muttering out loud.
If it's the season to be jolly, then why was I engaging in the mutter, er mother, of all social taboos? Simple: I went shopping at a big-box retailer two weeks before Christmas and less than two weeks after returning home from my auto stem cell transplant.
You see, I just had to buy two of the enormous wreaths that Costco sells for the unbelievable price of $4.98 each. My friend Carol and I filled our shared cart with a dozen or so items, checked out in record time and then strolled through the final gauntlet at the exit. That's where we hit our holiday snag. A sharp Costco employee discovered that I was charged for one, not two, of the wreaths. She sent me back to square one.
"I don't have to wait in the line again, do I?" I whined. "No. I'm going to send you to lane one. There's nobody there," she cheerfully responded.
She was right. There was nobody there - not even a cashier. I ran back to inform the cart checker and she told me to try again. I raced back and found that a cashier AND two other customers were now at lane one. The cashier sped through the first transaction, but she needed to go to another register to issue a credit for the second customer.
"No, no, you're not leaving me here, are you?" I pleaded like a preschooler to her mom on the first day of school. I begged her to take care of me first. "I have cash!" But before I could fling myself (and my cash) at her ankles, she was gone.
That's when the overt muttering began. "Why am I being punished for someone else's mistake?" "What's taking them so long?" On and on I went. The more I muttered, the unhappier I became.
One thing was certain: I had no reason to fear becoming one of those insufferable cancer survivors who reach an enlightened state of calm and serenity amidst the chaos of daily life.
OK - I admit it. I was hoping that I could be that insufferably patient patient. Or, at the very least, I wanted to be someone who knew when to take action and when to let go amidst the chaos of daily life. Muttering was not one of the options I had in mind.
I thought back to the time in Minneapolis just a few weeks ago when I was waiting for a shuttle bus from the airport to the hotel. After 30 minutes, I suggested to two other hotel guests that we share a cab and ask the hotel to reimburse us. The two business men from Australia placidly shrugged their shoulders.
Was I over-reacting? I decided to wait a few more minutes before calling the hotel. Their response: "We're having shuttle problems. Go ahead and take a cab and we'll reimburse you." Those easy-going Aussies might still be waiting if I hadn't taken action.
And I managed to wait for the cab without a single mutter under or over my breath.
Why wasn't I able to control my mad-woman muttering at Costco? The gentleman standing behind me looked at me knowingly, made a subtle "simmer down" gesture and then admitted, "I was just like you." Huh? He lifted up his cap to reveal a bald head while he nodded at my scalp-concealing hat.
"When I first got out of the hospital, I had no patience. You just have to tell yourself 'It's Costco' and let go.'" My friendly reminder went on to tell me that he was two months out from completing an auto stem cell transplant for multiple myeloma. "Me too. I'm two weeks out," I squealed with the joy I usually reserve for when I find out that my platelets have risen.
Before I knew it the cart checker had helped us round up another cashier and I was ready to go home and hang my wreaths.
Are my muttering days behind me? As a mutter of fact, probably not, but, I'm catching myself in the act and laughing out loud when it happens. I just hope the spontaneous laughter doesn't look as crazy as the muttering.
Everything rated
Friday, December 21, 2007
The Trend Continues
WBC 2.8 (4.0-11)
RBC 2.73 (3.8-5.2)
HGB 9.3 (11.5-15.5)
PLT 26 (150-350)
Day 35, Thursday, December 20
WBC 2.9 (4.0-11)
RBC 2.62 (3.8-5.2)
HGB 8.9 (11.5-15.5)
PLT 24 (150-350)
We're continuing on the same trend: the white blood cells are inching up while the red, hemoglobin and platelets are continuing to creep back. I didn't need a transfusion on Thursday as I'd predicted, but I'll no doubt need a platelet (and possibly a red blood) transfusion when I return next Thursday. As usual, I don't feel any correlation between low hemoglobin and fatigue levels.
And I continue to feel stronger, both mentally and physically, every day.
Otherwise, my life for the moment seems blissfully boring, and I'm not complaining one bit!
Mylo's Home
Settling into bed with Mylo, I realized how tired I was. My bones ached as I went under the covers. I guess I didn't realize how much stress really sinks into the body. But now we'll all be together very very shortly. And we can rest easy tonight.
Thursday, December 20, 2007
Oh, Oh, it never ends
My acupuncturist had told me to try Vicks VapoRub for my toe nails, but I couldn't quite believe him. And I will put foot cream on my chest and Chapstick on my split ends. Now I look around the Internet and there is mention of the Vicks cure--it's on line so it must be true. I should follow the scientific method and put Vicks on one foot and the $94.99 toe nail polish on the other. At least it'd be a way of making the polish last longer. For more on Vicks and feet, click here.
My Little Mylo
He looked really sad too, when he opened his eyes very briefly and took my arm so he could fondle my elbow (his favorite thing to do--elbows are like blankies to him). My heart about broke in two when I left his room.
He'll likely be home tomorrow, so we can all be together again. In the meantime, Chloe and I will keep each other company, reading books and watching movies.
What would Susan eat?
Thanks to the good folks at Duke's Mayonnaise, I have four jumbo-size jars of the decadent condiment to give away as contest prizes.
The two readers who answer the most questions correctly will win a jar of the stuff that's guaranteed to make your BLTs unforgettable.
Contest Rules:
- Do not post your answers in the comments section. Email them to susancarrier@sbcglobalnet.
- Answers to all questions can be found at www.cancerbanter.blogspot.com.
- Family members are eligible.
- In the event that more than two people achieve the same score, I'll issue a tie-breaker question.
- If you live in a state that sells Duke's Mayo, you will not receive Duke's as your prize. (Let's face it - it's cheaper for you to go down to the local Piggly Wiggly than it is for me to box and ship it to you.) Instead, I'll substitute something that's not available at your local market.
- Contest ends on Wednesday, January 2.
- What kind of mayo does Susan like on her BLTs?
- What kind of lettuce does she use on her BLTs?
- What is Susan’s favorite breakfast in So. Cal?
- What is Susan’s favorite breakfast in West Virginia?
- What did cousin Nathan and his wife Francis serve for lunch during Susan’s visit to West Virginia?
- What savory treat reignited Susan’s taste buds after her first visit to Hotel Hope?
- When Susan gets a craving for Vietnamese egg rolls, where does she head?
- Where does Susan go for her favorite iced tea addiction? What flavor?
- Name six fruits that grow in Susan’s back yard.
- Name an unusual hot dog accompaniment In West Virginia.
- What forbidden post-transplant food did the transplant expert from the University of Minnesota forget to mention?
- What is Susan’s (and the Carrier family’s) favorite place for pizza?
- Name two foods that Susan ordered for breakfast at Hotel Hope.
- Who is Susan’s favorite food writer?
- Name a Culver City food emporium where Susan has recently shopped.
graduation links
Attached are the links to my SMU Graduation, I don’t know what I will do next maybe medical school, or climb Mt. Everest.......
http://www.smu.edu/newsinfo/releases/07084.asp
http://www.smu.edu/flashvideo/?id=162
Wednesday, December 19, 2007
The Exciting Day
I had a blood test today on Ye Olde Cancer Floor at Fancy Hospital. The phlebotomists have always been nice and personal and usually talkative. There was one who'd had surgery for a repetitive motion disorder like carpal tunnel from gripping the test tubes. She said when she saw the hand surgeon in the hallway, her hand started hurting. There was another who always noticed my earrings when I went in for chemo. We were getting started today when another phlebotomist came by eating a shortbread cookie. The two of them talked about how tempting they were, and then my phlebotomist said she didn't mean to eat cookies and such but as soon as she sees them, she eats them. We commiserated about all the tempting foods out and about at this time of year and she told me she had to stop eating so much because she didn't want her New Year's Eve dress to be so tight on her that she looked like a whore, pardon my French. She told me she'd bought a dress on sale Marshall Field's in October or November five years ago, for $85, and it had sequins and ruffles on top and two tiers of material below her knees. It was going to be her New Year's Eve dress. But when the time came to put it on, it was too tight: Girl, she said, it looked like I had four titties and six booties.
So she didn't wear the dress that night. She's never worn it. It's still in the closet with the tags on. But she plans to. One day.
2. Whole Foods
The lady ahead of me in line told the cashier to put the food from the hot bar in a bag, and to give her the cookie. The cookie, she said, was for herself. The hot food was turkey tetrazini that she was going to give to a homeless man. He'd asked for spaghetti and meatballs and this was the closest she could find.
We say homeless and what does it mean? My undergraduates at Downtown University would use the word bum in their writing and I told them not to and I couldn't convince them I was right. They thought it was descriptive, not pejorative. I told them to describe the person instead. That way, the reader would have an image in her head. They could write homeless, but how could they know that was accurate unless they asked the person if s/he lived in a shelter? I suppose you can assume correctly that a person who is selling the StreetWise newspaper is homeless, or had to be when s/he first started hawking it. The point of selling it is to not be homeless forever, to use the selling job to get on your feet. Though at 75 cents take-home per sale, it might be a very long climb to self-sufficiency. Still, I say it: There was a homeless man...
I talked to a guy I know a couple of days ago in the Little Cafe Down the Street. I knew him from Cafe Avanti on Southport. He used to come in when he was tired or cold from selling the paper in front of the Jewel and do arcane astrology figuring. He sells StreetWise now in Evanston. He goes to the same church now as the owner of Avanti. When he saw me he told me Happy Hanukah. He said someone had stolen his books and he was trying hard to forgive them. We talked about Kabbalah and the colors of chakras. Is he still homeless? I don't know. I don't know where he lives. It sounded like his stuff had been stolen in a shelter, but he didn't come out and say that. Maybe he lives in an SRO. I didn't ask.
3. Yoga Party
Tonight my new yoga class had a party in an apartment two blocks from here. I'd been going to yoga three times a week at S Park (indoors), but when our beloved teacher J retired in August, the classes ended. Allegedly the park staff is still looking for her successor. How long does it take to find a yoga teacher in a big city? Apparently more than four months, if the people conducting the search work in the laziest, most patronage-heavy sector of local government. So I've been going on Wednesday nights to yoga at G Park, which is even a little closer to my house. The flyers about the party were handed out last week, our last class of 2007. I'd been skeptical about the party--I'd rather do yoga than have a party, but that wasn't the choice. I made a side dish, as assigned, and went. We told meeting-your-spouse/fiance stories. The yoga teacher works as a physical therapist who visits her clients at home. She was helping a man with cancer whose caretaker was a young Polish man who didn't know much English. The Pole was captivated by our teacher, by the way she was so focused on the patient she was working with, and so caring. And also that she was so beautiful. He suggested they get together. The premise was that he would teach her Polish, so she could speak to her Polish clients, and she would teach him English. The second time they went out he proposed they move in together. She assumed that he'd meant to say something else. But he hadn't. She said no. After a month he took her to her favorite restaurant and he gave her flowers and a small box. She opened the box and saw a diamond ring. She put it behind her back. She didn't want to see it. She told him it was too soon. He took her home. He kneeled and proposed to her in Polish, because he couldn't say what he wanted to in English. She said no and kept the ring for about a year. And then they decided it was time. That was this fall. They flew to Poland to see his family. She's from Taiwan. They'll visit her family next.
Story 2: When D was in high school, his family hosted a student from South America through the American Field Service. They stayed good friends. When D was divorced, he called his friend, now a doctor in his home country. His friend invited him to visit for three weeks. He did. He met the best friend of the friend's teenage daughter. That girl went home and told her mother (newly divorced) that she should meet this nice, handsome man from the United States. She did. She offered to show him around town. She gave him her card. The next morning she called his hotel room and said, Why haven't you called me yet? And she showed him around. They married about a year later and she moved here. At the party tonight, D passed around the business card she had given him when they met, eight years ago. He laminated it to preserve it. D is in the jewelry business and told our teacher he had never heard before of a woman keeping an engagement ring for a year without officially accepting it.
This yoga group is very tight. They went to Ravinia together last year. They met at a restaurant once. A few weeks ago we had people over here for Hanukah and M was saying that she thinks it's nice to have people you do an activity with but don't become friends with. She said, for example, she's glad just to see her yoga practitioners only at yoga. I had agreed at the time. At least I thought I'd agreed. Maybe I hadn't. In my old yoga class, there seemed to have been a group of Insiders who would hug J and ask about her daughter. These same people would talk before and after class with one another in a friendly, intimate manner. I wondered if they were friends before yoga. I think they were. After a few years J learned my name, and when I found out about my cancer and told her, I became one of the Insiders. At least I became Special. She sent me a get well card. My friend R (who I knew from Cafe Avanti) joined the class a couple of years after I did. I know he became friendly with a couple who came on Fridays, and he'd been to their house. I know this sounds like high school or grade school. But for a long while I was stymied by the already-set friendships in the class. It was like there was a clique I could never join.
There was one tall slim blonde in the Advanced class who one of my fellow Beginner classmates used to refer to the yoga goddess. The goddess worked as a chiropractor. And then she got cancer and it went to her brain and she died.
SMU Graduation
Tonight is a very special evening for each of our graduates and their families and friends.
Mustangs, you have taken such unique paths in getting to this great achievement that we celebrate this evening.
However, for one of our engineering Master’s degree graduates, his path has been nothing short of miraculous.
And given the special season we find ourselves in, it seems appropriate to share his journey with all of you here to remind us of how life affirming the pursuit of knowledge can be.
Jerrold Dash is an accomplished individual. At 34 years of age, he has already attained two Masters degrees and will be granted a third tonight in systems engineering from the SMU School of Engineering.
Jerrold is currently a staff systems engineer with Lockheed martin Aeronautics and is celebrating tonight with his lovely wife Rhonda, two beautiful daughters – Reagan and Ravyn, and of course his extended family and friends.
Jerrold’s journey to this evening begins in February of 2006. It was in this month, less than two years ago, that he and his family learned that he was suffering from stage four broncho-alveoli carcinoma, a form of lung cancer that occasionally afflicts non-smokers.
What a devastating shock to everyone – you see Jerrold was the picture of health, an active fit non-smoker who was a gifted scholarship football player in college. Simply put, no one saw this coming.
Yet, this terrible diagnosis did not stop Jerrold – against the odds and struggling to deal with the constant miserable chemotherapy, Jerrold continued to work on his degree and to move forward with his life.
Jerrold went on the transplant list for a bilateral lung transplant at Stanford Medical School, one of the few places in the world that would attempt such a complex surgery. He moved to the bay area awaiting the call that could save his life – and this too did not stop Jerrold from pursuing his degree. In fact, during the course of his illness, Jerrold said “If I could work, take classes, exercise and receive the support of my family, I would be dead emotionally. The idle time would kill me as I would just be going through the motions of living.”
And then he got the call that a pair of lungs was found.
So tonight, breathing the fresh cool air of December, Jerrold and his family celebrate the gift of life and the passion for learning.
Against immeasurable odds, no because of immeasurable odds - Jerrold, you are an inspiration to all of us and a reminder of the sacrifices we have all made in our lives in the pursuit of knowledge.
Geoffery Orsak, Ph D. Dean of the SMU School of Engineering
Penultimate
Last night, I was updating My Poetry Blog, and I started crying when I read some of the poems I had written over the past couple of weeks. I try not to be so gloomy, but it really comes out of my poetry. I read H one of the poems, entitled "Time-Lapse," and I couldn't stop sobbing. It's a pretty cheesy ass poem, but I guess it comes from the depths of my soul. So be it.
Anyhoo, here are some pictorial reflections of what's been going on during the last week and a bit:
{Comfort food for when I feel like crap...}
{...a true Asian Canadian remedy: Chinese chicken buns from a Chinese-Filipino bakery and donuts from Tim Hortons!}
{me and my Paul Schaeffer (from Late Night w/David Letterman} look.}
I also just put up new kiddins pics on my main blog if you want to check that out. It doesn't get any cuter than that!
Microsurgical Breast Reconstruction With Perforator Flaps
Pioneered in the early 1990's, perforator flap breast reconstruction represents the state of the art in breast reconstruction surgery after mastectomy. The tissue removed at the time of mastectomy may be replaced with the patient's own warm, soft, living tissue to recreate a "natural" breast.
Skin, fatty tissue, and the tiny blood vessels that supply nutrients to the tissue ("perforators") can be taken from the patient's abdomen (SIEA flap and DIEP flap procedures) or buttocks (GAP flap procedure).
Unlike conventional tissue reconstruction techniques (like the TRAM flap), these microsurgical perforator flap techniques carefully preserve the patient's underlying musculature. The tissue is then transplanted to the patient's chest and reconnected using microsurgery.
Preserving underlying muscles lessens postoperative discomfort making the recovery easier and shorter, and also enables the patient to maintain muscle strength long-term. This is particularly important for active women.
While microsurgical breast reconstruction offers many advantages to the patient, the surgeries are very complex and time-consuming and specialized training is required. Our surgeons perform over 300 microsurgical breast procedures per year making PRMA Plastic Surgery one of the busiest breast reconstruction centers in and beyond the USA.
To learn more about each of the perforator flap techniques offered at PRMA please click on the following links:
DIEP flap
SIEA flap
GAP flap
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Dr Chrysopoulo is board certified in Plastic and Reconstructive Surgery and specializes in breast reconstruction surgery after mastectomy for breast cancer. He and his partners perform hundreds of microsurgical breast reconstructions with perforator flaps each year. PRMA Plastic Surgery, San Antonio, Texas. Toll Free: (800) 692-5565. Keep up to date with the latest breast reconstruction news by following Dr Chrysopoulo's Breast Reconstruction Blog.
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Monday, December 17, 2007
Christmas Memories
Wayne recently received a visit from a mutual friend who brought a copy of an essay I wrote for the LA Times way back in 1993. Wayne and his family were the hosts of the Christmas party that inspired the essay.
In his email, Wayne wrote, "Both of our Christmases are a bit different than a year ago, don't you think?" One thing's for sure - they'll be memorable for both of us.
Here's the story that first appeared in the LA Times in December 1993, shortly after I segued from my career as "full-time mom" to "writer."
(And, while we're at it, how about if you share a "happy memory from a Christmas or holiday past.")
Memories of Christmas Stuffed with Joy
"Bring a happy memory from a Christmas past," instructed the invitation to the Bishops' annual Christmas party.
I searched my memory for a splashy story that would impress the other party guests, but my mind kept coming back to the one thing I loved best about Christmas: tramping out with my grandmother to her woods to select and chop down the tree. We always returned home with the scrawniest "Charlie Brown Christmas" tree we could find, threw cotton balls at its sagging branches, hung candy canes on its tired limbs and declared it the most beautiful tree ever.
My husband's favorite memory was just as simple. George recalled that when he was very young his mother created her own Christmas ornaments. She cut out used Christmas cards, taped aluminum foil to the back of each cutout, and then strung the homemade ornaments from the ceiling and on the trees. George was in awe of these beautiful creations.
We were both surprised to learn that our favorite memories were not elaborate, but evocative of a simpler time in our lives when money wasn't a necessity for creating a special memory. Most of the memories shared by guests at the Bishops' party carried the same theme.
"Mom, tell the story about the orange," was a familiar chant in the home of Dean Kieffaber when he was growing up. He and his four siblings begged their mom to retell the story of her favorite (and only) childhood Christmas present, a perfect piece of fruit. The children thought it was wildly funny that their mom could cherish the memory of an orange. They loved to picture her savoring each bit of the luscious fruit until the last sticky morsel was nothing but a memory.
"I was just talking to an older gentleman who had an orange story, too," chimed in another guest. Unlike Dean's mom, who actually enjoyed consuming the orange, this gentleman couldn't bear to part with his prized possession. He kept the orange, admiring it each day, until it shriveled into nothing.
Barbara Friend fondly recalls the Christmas when she and her husband could not afford a tree or gifts. She gathered pine branches after a wind storm and tied them together. For presents, she wrapped borrowed library books and lovingly placed them under her makeshift tree.
*
Jim McClendon loves the childhood memory of his father taking him to the fireplace to make sure that the flue was open wide enough to accommodate Santa.
While listening to these stories, I realized that ingenuity and sharing, not expensive gifts and gala Christmas fetes, were the common threads that wove special memories.
I couldn't help wondering what special Christmas memories our 4-year old daughter, Cynthia, will cherish as an adult. Conscious of my somewhat humble upbringing in a small town in West Virginia, I often find myself overcompensating. In an attempt to create special Christmas memories for Cynthia, I have orchestrated elaborate parties, accompanied her to lavish productions of "The Nutcracker," and taken her to the Christmas breakfast at Bullocks, a childhood extravaganza complete with Santa, life-size dolls and teddy bears working the room, festive decorations, and a puppet show.
My den has quickly filled with not one, but dozens of presents, in hopes that one will be the prized gift she cherished forever.
I am soon exhausted by my efforts to make everything special and realize that, as a result, nothing is special.
But, in spite of myself, Cynthia has a cherished memory of a Christmas past. It's not the "Nutcracker," the breakfast extravaganza, the trip to Santa's Village, Santa's visit to our home, or last year's coveted singing Ariel mermaid doll that she recalls with childhood enthusiasm.
As we recently drove down St. Albans Road in San Marino, a street lined with massive evergreens festooned in lights, her face brightened as she recalled her favorite Christmas memory. "Mommy, remember when we got out of the car with Meryl and danced down this street in the rain last Christmas?"
"Yes, I sure do remember." And together we talked about the magic we created when we pretended St. Albans Road was the North Pole, a destination we reached on the Polar Express, an imaginary train from a classic children's story. Surrounded by the lights, we held hands and frolicked down the street, splashed in tiny puddles, and felt the raindrops dancing on our cheeks.
We both tingled as we remembered the feeling and I realize that we have a memory in the same league as oranges and homemade ornaments.
How ARE you?
My white blood cell counts are slowly but surely rising. The red blood cell and hemoglobin counts are taking some baby steps backward. And we keep doing the dance of the platelets. You know the steps (To the tune of "Hokey Pokey"): We see the platelets go up; we see the platelets come down. We get a transfusion and we turn it all around. We wait a couple Mondays and they come back down again. That's what it's all about. CRAP. CRAP.
Day 21, Thursday, December 6
(Numbers in parentheses are normal ranges.)
WBC 2.0 (4.0-11)
RBC 3.26 (3.8-5.2)
HGB 10.7 (11.5-15.5)
PLT 27 (150-350)
Day 25, Monday, December 10
WBC 2.5 (4.0-11)
RBC 3.09 (3.8-5.2)
HGB 10.3 (11.5-15.5)
PLT 19* (150-350)
*65 after TRANSFUSION
Day 28, Thursday, December 13
WBC 2.7 (4.0-11)
RBC 2.95 (3.8-5.2)
HGB 9.9 (11.5-15.5)
PLT 47 (150-350)
Day 32, Monday, December 17
WBC 2.8 (4.0-11)
RBC 2.73 (3.8-5.2)
HGB 9.3 (11.5-15.5)
PLT 26 (150-350)
Physical: I seldom take naps, I'm walking almost daily (going farther and faster each time) and I'm back to Pilates class. This Wednesday, I plan to try out the Tai Chi class at the Wellness Community in Pasadena.
Mental: The worst of the chemo fog seems to be lifting. I can even sustain the attention it takes to read (and finish) a book. That's a taken-for-granted pleasure that I've missed the most. Now that I have a couple more weeks left in "recovery mode," I plan to take full advantage.
Appetite: I think it's safe to say that my appetite is in full swing, and I'm gradually gaining back weight. A negative side effect is that I'm becoming lazy and spoiled from all of the scrumptious soups, meals and sweets that friends have delivered to the house.
Hear that sound? BEEP, BEEP, BEEP, BEEP, BEEP. That's the sound of me preparing (i.e. heating up) dinner.
Sunday, December 16, 2007
Words Per Day
One of the things she said on her first visit has really stuck with me. "We all have so many words per day that we need to get out." I was happy that I could be there as a listening board for her many words that were waiting to spill.
I think the number of words per day varies from person to person. George's mom was a delightful non-stop talker up until her last day. I don't think she ever managed to meet her daily quota of words.
My dad, on the other hand, has little to say; he's quiet to the point of being taciturn. Every once in a while on one of my visits to West Virginia, he talks non-stop for long stretches of time. During these talking jags, I think, "So many stories, so many thoughts needed to be shared." I've always been grateful that I've been in West Virginia to hear them. (Susan K. would no doubt advise me to have a tape recorder ready next time.)
When I think of my new CoH friend and my dad, I'm reminded that it's not enough to simply get the words out, whether it's on the phone, in person, on paper or electronically. What's important is to know that the words are being heard.
I've had a lot to say over the course of the last year. Paula once said to me, "Writers write for one reason and one reason only: they need to. They need to do it for money or they need to do it as a way of expression." I have been an example of someone with a serious NEED to write. I'm just now realizing that one of those reasons was the need to be heard.
And, in spite of my recent post about transitioning to the food blog, I still have a need to get out a lot more words per day. I'm crying right now as I'm typing this because I'm so grateful to all of you for giving me this powerful and healing gift of reading and hearing my words.
Thank you.
Saturday, December 15, 2007
What's red and yellow and green all over?
Because I have frequent flyer cards in both the stem cell collection and transfusion rooms and a pre-diagnosis career in the energy efficiency industry, I'm tickled pink by this announcement.
I just wonder if patients will still have to ask for a blood warmer when harvesting stem cells.
Here's the complete story from today's Pasadena Star News:
City of Hope begins work on new transfusion center
DUARTE - City of Hope officials will break ground today on the new Michael Amini Transfusion Medicine Center. The new facility will also house the CoH's stem cell collection unit and the National Marrow Donor Program.
The new 60,000-square-foot facility will allow City of Hope to expand its blood collection, analysis, processing and transfusion programs to meet increasing patient and donor volume, officials said.
It is also the institution's first green-certified building.
City of Hope President and Chief Executive Officer Michael Friedman and Chief Medical Officer Dr. Alexandra Levine were expected to don hardhats and shovels for the ground-breaking ceremony, alongside Michael Amini, chairman and chief executive officer of AICO, Amini Innovation Corp.
Amini, a longtime supporter of City of Hope, contributed $6 million to fund the construction of the facility. The Conrad N. Hilton Foundation gave a $2 million matching grant.
"I learned of City of Hope through a close business colleague, and after attending several fundraising events, getting to know individuals treated at City of Hope, and touring the facility, I realized that this was a place truly worthy of my strongest support," said Amini. "It is my hope that this building will support City of Hope's treatment and research for decades to come."
The Amini Center will house all components of the Department of Transfusion Medicine, consolidating City of Hope's blood collection and processing programs and providing a modern, comfortable environment for patients, donors and staff, officials said.
The new facility will enable City of Hope to expand transfusion services for transplant, oncology and surgery patients, participate in leading-edge cellular therapy research, and meet new and future government-mandated processing requirements for blood and stem cells and accommodate further expansion.
The facility's second floor will house the Blood Donor Center, the Stem Cell Collection Unit for patients, the National Marrow Donor Program and blood recruitment offices, and physicians' offices. It will also feature space for private consultation, state-of-the-art blood and platelet collection, treatment services for transplant patients, and a specially designed area for pediatric services.
The Amini Center's third floor will be used to expand operations and meet the department's future needs.
"Transfusion medicine plays an increasingly prominent role in modern medical care," said Friedman. "Without life-sustaining transfusion support, many complex treatments and surgical procedures would not be possible."
Certified by the United States Building Council, the Amini Center's design meets the rigorous standards of the Leadership in Energy and Environmental Design rating system, officials said.
The building maximizes energy resources while integrating eco-friendly innovations and technologies, including a cool roof to reduce energy demand and energy-efficient HV/AC equipment. Recycled content products such as insulation, steel and ceramic tile flooring will be used for the building's construction.
Friday, December 14, 2007
Luck
Today is okay. It is raining--again--of course. There is a preschool holiday potluck party that we have to go to today. H said we should just skip it, but the kids like the cheesy magician, and they've been practicing "Feliz Navidad" nonstop, so I said we should let them get it out of their system (it takes patience to hear them butcher the song over and over again).
I still have some pain in my back and joints, and the skin on my hands looks like that of the living dead, but at least my pounding headache is gone for now. And I'm not eating like a toothless 90-year-old anymore (prunes and congee).
I keep telling myself that I should feel lucky to be able to get treatment--and without the hassle of dealing with insurance companies--but it's hard to feel lucky when you feel like crap. Like it's hard to smile and say, "Goddamn, I am sooo freakin' lucky that I feel like one big giant boiling mutant," but I suppose it is true that I am lucky.
Anyhoo, I'm also lucky that I have a husband who cares for me, kids who sing "Jingle Bells" (and butcher that too) to make me happy, parents who are willing to come to help out, in-laws who help out in more ways than they believe, and friends who make me laugh over the phone, email, and Facebook. For all that, I truly do feel lucky.
Thursday, December 13, 2007
The Catalog Family
These days, when I see a well groomed, coordinated family, I like to remark to myself, "Why, they look like they've just stepped out of the same catalog," whether it's The Gap, JC Penney's or Neiman Marcus.
We are not that family. We are the poster family for mix-it-up diversity. We don't worship at the same churches, dress from the same catalogs or order from the same menus. And, most of the time, it works for us.
George is a blue-eyed, English-Irish Mayflower descendant. I'm a Hapa, with my mother contributing the kimono-wearing Japanese half and my dad the kilt-clad Scottish side. Cindy is a raven-haired beauty with family roots in Jalisco, Mexico. When it comes to religion, I like to call us the "ABC family" with an agnostic, a Baptist-Buddhist and a Catholic under the same roof. No problem.
As for catalogs, I gravitate towards the classics in J Crew or Banana Republic and throw in a touch of vintage for panache. George (and I hate to admit this) is partial to JC Penney's with no added panache. And it's impossible to confine Cindy's sense of style to a single catalog. Suffice it to say that she would not be caught dead in either Banana or JC Penney's. Again, not a problem.
But what's a family to do when the taste buds swing farther apart than the catalogs?
Let's start with a simple family pasta dinner. I like my pasta cooked al dente, but 18-year-old Cindy and George prefer their noodles wiggly. Cindy, who still has the taste preferences of a pre-schooler ordering from a kid's menu, loves penne pasta with butter and Parmesan cheese. At least she shuns the sawdust in the green can in favor of the freshly grated variety. Of course, sugar-laced Spaghetti O's are still a fave. (Although, now that I'm home from Hotel Hope, I've banned them from our pantry.)
George's favorite dinner is spaghetti with meat sauce, salad and bread. Sounds simple enough, but we're palate opposites in every category. He likes my doctored-up version of sauce in a jar with ground meat, fresh herbs, crushed red pepper and wine. I'm in heaven with fresh tomatoes from the garden with plenty of fresh-picked basil cooked up in lots of garlic and olive oil served over a bed of angel hair pasta. ("This pasta is too skinny," huffs George.)
For George, salad is based on the "polyester of lettuces," Iceberg. Throw in a few tomatoes (even when they're anemic and out-of-season) and a chopped carrot, top it with bottled Thousand Island dressing and he chows down. The bread should be soft on the outside and soft on the inside. (All of this, of course, is even more upsetting to me than shopping trips to JC Penney's.)
So what's a mom/head cook to do? Take the hard line, "If you want it YOUR way, then cook it your way" tack? Go for the least common denominator and serve up something acceptable to everyone? Bite the soggy bullet and settle for water-logged instead of al dente pasta? Keep trying to convert my family to the virtues of slightly chewy pasta, designer lettuces, home-made balsamic dressings and crusty breads? Sigh.
I'll bet the family in the JC Penney's catalog doesn't have these problems.
COMMENTS: When it comes to food, are you a catalog family? What challenges does your family face?
(This food essay also appears at www.openmouthinsertfork.blogspot.com)
This Really Fucking Sucks
Basically, I feel terrible. I have okay days where I'm able to do some stuff, but I assess my energy level to be 50% of what it used to be. Thankfully, after Wednesday, I only have one more chemo to endure. I do hope that this is all worth it in the end.
With all that's happening to my body, I've been having super-strong urges to do some body modification, like in the good old days. But of course, needles are out of the question, so no tattoos or piercings. Yesterday, I just suddenly became obssessed with earlobe stretching. So on the way back from massage therapy, I popped into the Puncture Haus and inquired about it. It's a long process, involving increasing sizes of rings and such. So I bought my first set of 14 gauge hoops and am on my way to stretching my earlobes. In a way, it's like taking some control over my body because I've lost so much control over it.
Anyway, it's snowing now. A really wet snow. Good weather for hibernating.