I realize that I have a newfound responsibility to friends and aquiantances- namely, to keep them updated and free of worry.
so, brief update- I have a 3x3" tumor wedged in between bone and muscle. They are running tests at Stanford now and still won't give me a definitive cancer/no cancer diagnosis after 2 weeks of waiting.
Aside from the opiate haze, I've been filling my days with an insatiable amount of reading and sketching for senior collection. Of course, this has also been a time of introspection and loneliness. I am very lucky to have people in my life that care about me, whether they can be here or not.
Sunday, August 31, 2008
Returning to Normal
I suspect that many Cancer Banter readers may have rolled their eyes (I saw that) after my last post, The Healing Power of Pecan Sticky Buns. Yes, I admit that I was so encouraged by my sudden progress that I figured I'd be my old self before McCain's acceptance speech at the Republican National Convention.
But reality set in over the weekend. After I wrote Paula that my recovery back to normal was going to be slow, she cautioned: "Please print this [my declaration of slow recovery] out and tape it to your bathroom mirror! I KNOW you--you'll start feeling peppy and decide you want a pool in the back yard and you'll just start DIGGING." She knows me too well.
Even though I continue to do just a bit more each day, I'm discovering that I still have serious limitations. I puttered in the kitchen for 30 minutes this morning - nothing more exerting than cubing a watermelon and loading the dish washer - but I was left breathless and tired.
Four friends came by with a beautiful brunch feast at 10 am. We had homemade lemon pound cake, chocolate brownies and fresh fruit galore (strawberries, blackberries, blueberries, bananas, watermelon, grapes), all washed down with freshly brewed strawberry-kiwi black tea. Most of the guests ate their fruit with yogurt, but I squirted loads of high-fat whipped cream on mine. I'm counting calories, ya' know.
I was having a delightful time, but after one hour, I was worn out. I had to excuse myself so that I could rest, but I encouraged the party to continue. I came down a little later to say goodbye to my friends and to show off the latest upgrades to the shade garden.
Our shade garden, beneath the redwood trees in the side yard, is a
refreshing retreat during the Dog Days of August. (Click to enarge.)
I was hoping that I would feel good enough today to make a brief appearance at a friend's house warming party. Scratch. I was thinking I might feel good enough to show up at a friend's Labor Day barbecue. Scratch.refreshing retreat during the Dog Days of August. (Click to enarge.)
The puttering and the small gathering were enough for me. I was content to spend the rest of the day with my LA Times (although the Sunday edition has become dismal), NY Times and take-out fried chicken, greens, mac and cheese and corn bread from Roscoe's House of Chicken and Waffles. The day was far from "normal," but it was good.
Saturday, August 30, 2008
Debate About the CSC Hypothesis
There continues to be some controversy about the possibility that the cells that have been identified as cancer stem cells may just have special abilities to grow in mice after transplantation. This possibility is mentioned in an article, A Tumor's Lifeblood, by Jessica Gorman (CR magazine, Summer 2006, page 2).
A comment in Science (Dec 14, 2007) about this controversy is freely accessible. (I've added some links to the references cited in the excerpts quoted below). The comment is:
Comment on "Tumor Growth Need Not Be Driven by Rare Cancer Stem Cells", by James A. Kennedy, Frédéric Barabé, Armando G. Poeppl, Jean C. Y. Wang, John E. Dick. Science 2007(Dec 14); 318(5857), 1722. Excerpts:
A comment in Science (Dec 14, 2007) about this controversy is freely accessible. (I've added some links to the references cited in the excerpts quoted below). The comment is:
Comment on "Tumor Growth Need Not Be Driven by Rare Cancer Stem Cells", by James A. Kennedy, Frédéric Barabé, Armando G. Poeppl, Jean C. Y. Wang, John E. Dick. Science 2007(Dec 14); 318(5857), 1722. Excerpts:
Kelly et al. (Brevia, 20 July 2007, p. 337) questioned xenotransplant experiments supporting the cancer stem cell (CSC) hypothesis because they found a high frequency of leukemia-initiating cells (L-IC) in some transgenic mouse models. However, the CSC hypothesis depends on prospective purification of cells with tumor-initiating capacity, irrespective of frequency. Moreover, we found similar L-IC frequencies in genetically comparable leukemias using syngeneic or xenogeneic models.The response is also freely accessible: Response to Comment on "Tumor Growth Need Not Be Driven by Rare Cancer Stem Cells", by Jerry M. Adams, Priscilla N. Kelly, Aleksandar Dakic, Stephen L. Nutt, Andreas Strasser. Science 2007(Dec 14); 318(5857), 1722. Excerpt:
.....
Kelly et al. (1) raise the important point that some experimental cancer models may not follow the CSC hypothesis. Accordingly, some human cancers may be found that also do not adhere to this model. However, it is important to consider that, similar to many cell lines that have lost the hierarchical structure of the primary leukemia from which they originated, some experimental mouse models may not accurately reflect spontaneously occurring human malignancies. For example, one could argue that some of the models used by Kelly et al. (i.e., the N-Ras lymphoma) have limited human antecedents.
We agree with Kennedy et al. (6) that tumors are likely to fall on a spectrum in which the tumor-propagating cells range from infrequent to the dominant population. However, the marked disparities between most transplant results with human and mouse leukemias suggests that current xenotransplantation systems seriously underestimate the frequency of cells that can maintain the growth of human tumors. Several mouse tumor models challenge the generality of the cancer stem cell hypothesis, and more compelling tests with human tumors presumably will require transfer into mice installed with all the requisite human support cells and support factors. Much of the excitement about the cancer stem cell hypothesis arises from the possibility that the putative stem cell population will prove to be uniquely responsible for the relapses that so frequently follow conventional therapy (1). On the available evidence, however, we suggest that curative therapy will require targeting all the tumor subpopulations.From the editor: I'd welcome comments about this debate. To post a comment, it's currently necessary to register (to reduce spam posts). Comments will be moderated by the editor.
Soccer, picnic and vomit
This weekend is a holiday weekend but we won’t be able to get in rest, I am just happy that I am not kicking off this football season in the spa (hospital), its hard to find or sneak in hot wings and beer (root beer) when your on the heart lung floor…. It can be done though…. It is not mission impossible you do deserve some comfort while uncomfortable in the spa…just tell them that the orange stains on your sheets and gown are IV fluid that leaked out from one of your IV bags…
Friday we went to watch TCU play Xavier in soccer, I am sure it was an exciting game Rhonda and I wanted Raegan and Ravyn to see some positive women’s sports. Our family time at the soccer game lasted longer than our Texas Rangers game (viewed after the transplant softball game May 2008, we didn’t even make it to the first inning heck we didn’t even make it to the national anthem the girls were hot and needed a nap) I digress… we saw one score by TCU all told about 45 seconds of soccer and 4 minutes of halftime before the flood gates opened and Ravyn threw up on the people in front of us (I told y’all to sit down) then she threw up on Mommy, threw up on Raegan, threw up on the people on the stairs (clear a path, move) I slight stomach virus… she is fine.
Today we had our church picnic and Ravyn was fine playing like nothing happened yesterday, she and Raegan enjoyed the water bounce house I will have to post pics later, Rhonda and I enjoyed having grown folks talk as it was our first time being able to go to the church picnic since 2005.
I was supposed to get another A1C blood test today but they were closed for the holidays so I will get it on Tuesday and send it off to my medical Posey
I feel less sick, less congested today
Friday we went to watch TCU play Xavier in soccer, I am sure it was an exciting game Rhonda and I wanted Raegan and Ravyn to see some positive women’s sports. Our family time at the soccer game lasted longer than our Texas Rangers game (viewed after the transplant softball game May 2008, we didn’t even make it to the first inning heck we didn’t even make it to the national anthem the girls were hot and needed a nap) I digress… we saw one score by TCU all told about 45 seconds of soccer and 4 minutes of halftime before the flood gates opened and Ravyn threw up on the people in front of us (I told y’all to sit down) then she threw up on Mommy, threw up on Raegan, threw up on the people on the stairs (clear a path, move) I slight stomach virus… she is fine.
Today we had our church picnic and Ravyn was fine playing like nothing happened yesterday, she and Raegan enjoyed the water bounce house I will have to post pics later, Rhonda and I enjoyed having grown folks talk as it was our first time being able to go to the church picnic since 2005.
I was supposed to get another A1C blood test today but they were closed for the holidays so I will get it on Tuesday and send it off to my medical Posey
I feel less sick, less congested today
Friday, August 29, 2008
In a moment
In a moment....our lives can change. In an instant.
Safety is an illusion.
I work as a nurse in an intensive care unit. Last week a health care worker drew blood on an HIV positive patient and then accidentally stuck herself with the dirty needle. A life-changing moment, a life-changing instant.
I've thought before that I wished life had the same "undo" button that exists on my word processor, my email program. I wish I had an undo button that I could keep in my pocket. How would life be different if we carried undo buttons? I know that health care worker so wished she had access to an undo button. That she could have rolled back time to the instant before.
I was supposed to also draw blood on that same patient later that day. It made me feel vulnerable...I've stuck myself with dirty needles already twice this year. I'm unlucky with needles. Another nurse I worked with, who had young children at home, drew the blood instead of me. She said she had no fear, even after the incident that same day with our colleague. She felt my discomfort might make me more likely to have an accident, so felt she was the better person to draw the blood. I was ashamed I wasn't more courageous. She was my hero that day. I was weak, she was strong.
But I used to be the fearless one.
I don't want to blame cancer, but my cancer experience has made me feel more vulnerable. The bad thing doesn't always happen to someone else, sometimes the bad thing happens to you. The unexpected thing. The thing you never would have predicted.
Over the years I've drawn lots of blood....many times in an inner city ICU. Many of our patients were IV drug abusers. They hadn't been tested for HIV, but I'm sure some would have tested positive. But before cancer I drew their blood all of the time without hesitation, even those with a pending HIV test (years ago I even stuck myself with the dirty needle of a patient with an HIV test pending..his test later came back negative).
But before cancer I felt safe. I didn't feel as vulnerable.
After cancer, though, I know all bets are off. I vividly remember when I first learned I had cancer. My own life-changing moment.
I know now my future can change....in an instant. Anyone's can.
Safety is an illusion.
I work as a nurse in an intensive care unit. Last week a health care worker drew blood on an HIV positive patient and then accidentally stuck herself with the dirty needle. A life-changing moment, a life-changing instant.
I've thought before that I wished life had the same "undo" button that exists on my word processor, my email program. I wish I had an undo button that I could keep in my pocket. How would life be different if we carried undo buttons? I know that health care worker so wished she had access to an undo button. That she could have rolled back time to the instant before.
I was supposed to also draw blood on that same patient later that day. It made me feel vulnerable...I've stuck myself with dirty needles already twice this year. I'm unlucky with needles. Another nurse I worked with, who had young children at home, drew the blood instead of me. She said she had no fear, even after the incident that same day with our colleague. She felt my discomfort might make me more likely to have an accident, so felt she was the better person to draw the blood. I was ashamed I wasn't more courageous. She was my hero that day. I was weak, she was strong.
But I used to be the fearless one.
I don't want to blame cancer, but my cancer experience has made me feel more vulnerable. The bad thing doesn't always happen to someone else, sometimes the bad thing happens to you. The unexpected thing. The thing you never would have predicted.
Over the years I've drawn lots of blood....many times in an inner city ICU. Many of our patients were IV drug abusers. They hadn't been tested for HIV, but I'm sure some would have tested positive. But before cancer I drew their blood all of the time without hesitation, even those with a pending HIV test (years ago I even stuck myself with the dirty needle of a patient with an HIV test pending..his test later came back negative).
But before cancer I felt safe. I didn't feel as vulnerable.
After cancer, though, I know all bets are off. I vividly remember when I first learned I had cancer. My own life-changing moment.
I know now my future can change....in an instant. Anyone's can.
The Healing Power of Pecan Sticky Buns
I woke up this morning feeling better. Not just a little better, but a lot better, as in, "Ooh, I get to bake the Trader Joe's pecan sticky buns that were rising overnight." Better as in, "Yum, that was a tasty 390 calorie treat, but I think I need another one."Better as in, "Hey, the thought of going up and down the stairs does not intimidate me."
I've consumed my 900 calorie breakfast and taken my meds and fed and watered the animals and I'm ready to hop into the shower. What a lark! What a plunge! (I've been rereading Mrs. Dalloway.)
Up until now, I think I was lying when I said I felt a "little better." I was just so damn tired of sounding like a negative Nellie and I wanted to believe that I was improving, but I had no evidence of that. Saying I felt a "little better" satisfied the questioner and, I hoped, would convince my body that I really was getting better.
The astute Dr. Forman picked up on this yesterday. I had told the nursing staff that I felt a "little better," and he was excited by this report. But when he saw me, he said, "Define 'feeling better.'" Busted. The only thing I could come up with was that my cough has improved.
But today I am not delusional. I am feeling better* and I am jubilant. I may even go downstairs for another one of those pecan sticky buns.
(*More energetic, less shortness of breath, no dizziness)
I've consumed my 900 calorie breakfast and taken my meds and fed and watered the animals and I'm ready to hop into the shower. What a lark! What a plunge! (I've been rereading Mrs. Dalloway.)
Up until now, I think I was lying when I said I felt a "little better." I was just so damn tired of sounding like a negative Nellie and I wanted to believe that I was improving, but I had no evidence of that. Saying I felt a "little better" satisfied the questioner and, I hoped, would convince my body that I really was getting better.
The astute Dr. Forman picked up on this yesterday. I had told the nursing staff that I felt a "little better," and he was excited by this report. But when he saw me, he said, "Define 'feeling better.'" Busted. The only thing I could come up with was that my cough has improved.
But today I am not delusional. I am feeling better* and I am jubilant. I may even go downstairs for another one of those pecan sticky buns.
(*More energetic, less shortness of breath, no dizziness)
we clean up nice
But could we get one pic where all of us were looking at the camera and smiling? Um, no.
Updated to add this cute pic of D. and my nephew, in their matching ties. S. had a matching one, too.School Daze, First week of school
We are wrapping up the first week of kindergarten today. The first week of school is basically a rollercoaster of emotions for me and the family as well. Watching Raegan go off to school marks a milestone I shouldn’t have reached so medical community cut and paste that and insert it into your revised white papers. The rollercoaster for me goes from the prideful high to the scary lows in this case the lows would be the geometrically increasing exposure to bugs, viruses, infections, and other health aliments that all school age children seem to pickup and bring home. My goal, the goal of any transplant patients is to stay out not just because the spa is an unpleasantly frustrating place, but it is expensive because of the medical bills and in my case it gives my wife a chance to shop (shop, shop, shop “Women be shopping”, Chris Rock) with out hearing any objection to her purchase from me.
Thursday, August 28, 2008
Thank You, Friends
I have been so touched and moved to tears by all of the comments I received after my last post, "Sicko." Thank you for embracing me and holding me up. My Colorado friend Ellen also wrote a beautiful response, but she wasn't able to post it and called to read it to me. I was moved to tears again.
I've made some decisions in regard to making my life a little easier. My most challenging time is the morning. I have a dog and cats that need to be fed. I need to make sure that I eat breakfast so that I don't take my 9 pills on an empty stomach. These tasks can be overwhelming for me. Alas, I cannot depend on the teen in the morning because of her late sleeping habits.
I decided to hire someone to come by our house in the morning on her way to work. She'll pick up the newspapers, feed and water the animals, make and serve breakfast and tea and make sure I have a pitcher of fresh water. I let my cleaning lady do these things for me yesterday (I usually refuse personal assistance), and it was a great relief.
When I went out to the City of Hope today, my goal was to be wheel chair free. I had it all plotted out in my mind how I would do it. But on the way to my blood draw, I had one of my dizzy spells. Luckily, my friend Mary was nearby, and I latched onto her.
A nurse came by with a wheel chair and announced to me, "You'll need to use this today." So much for being ambulatory.
Dr. Forman and I discussed the dizziness and fainting spells and how they have increased in intensity and frequency. Could it be related to low blood pressure? I now have a prescription to raise blood pressure. Could it be heart related? I have an appointment with a City of Hope cardiologist. I'm relieved to be seeing the cardiologist. I've been corresponding with a few people with eosinophillic illnesses, and they all have advised me to get an EKG because the EOS often infiltrate to the heart.
Yes, I need to raise my blood pressure. I need to gain weight. It's as though I live in the backward land of Bizarro. Let's see . . . maybe I should raise my cholesterol too. Perhaps I should take up smoking while I'm at it.
I've made some decisions in regard to making my life a little easier. My most challenging time is the morning. I have a dog and cats that need to be fed. I need to make sure that I eat breakfast so that I don't take my 9 pills on an empty stomach. These tasks can be overwhelming for me. Alas, I cannot depend on the teen in the morning because of her late sleeping habits.
I decided to hire someone to come by our house in the morning on her way to work. She'll pick up the newspapers, feed and water the animals, make and serve breakfast and tea and make sure I have a pitcher of fresh water. I let my cleaning lady do these things for me yesterday (I usually refuse personal assistance), and it was a great relief.
When I went out to the City of Hope today, my goal was to be wheel chair free. I had it all plotted out in my mind how I would do it. But on the way to my blood draw, I had one of my dizzy spells. Luckily, my friend Mary was nearby, and I latched onto her.
A nurse came by with a wheel chair and announced to me, "You'll need to use this today." So much for being ambulatory.
Dr. Forman and I discussed the dizziness and fainting spells and how they have increased in intensity and frequency. Could it be related to low blood pressure? I now have a prescription to raise blood pressure. Could it be heart related? I have an appointment with a City of Hope cardiologist. I'm relieved to be seeing the cardiologist. I've been corresponding with a few people with eosinophillic illnesses, and they all have advised me to get an EKG because the EOS often infiltrate to the heart.
Yes, I need to raise my blood pressure. I need to gain weight. It's as though I live in the backward land of Bizarro. Let's see . . . maybe I should raise my cholesterol too. Perhaps I should take up smoking while I'm at it.
Human Cancer Stem Cells: A Recent Review
Cancer stem cells: at the headwaters of tumor development,
Ward RJ, Dirks PB. Annu Rev Pathol. 2007;2:175-89. Abstract:
Ward RJ, Dirks PB. Annu Rev Pathol. 2007;2:175-89. Abstract:
According to the cancer stem cell hypothesis, only a subpopulation of cells within a cancer has the capacity to sustain tumor growth. This subpopulation of cells is made up of cancer stem cells, which are defined simply as the population of cells within a tumor that can self-renew, differentiate, and regenerate a phenocopy of the cancer when injected in vivo. Cancer stem cells have now been prospectively isolated from human cancers of the blood, breast, and brain, and putative cancer stem cells have been identified from human skin, bone, and prostate tumors and from multiple established mammalian cancer cell lines. Furthermore, researchers are actively seeking cancer stem cells in every human cancer type. We present the current scientific evidence supporting the cancer stem cell hypothesis and discuss the experimental and therapeutic implications of the discovery of human cancer stem cells.
Cancer Stem Cell Consortium Launched
See: Sweeping Cancer Fight Launched by CIRM and Canada,
David Jensen, California Stem Cell Report, June 18, 2008. Excerpts:
David Jensen, California Stem Cell Report, June 18, 2008. Excerpts:
SAN DIEGO -- Backed by $100 million in Canadian cash, the Canadian government and the California stem cell agency today announced a three-year effort to probe the role of cancer stem cells in developing the disease...
.....
Canadian Minister of Health Tony Clement said his government will contribute more than $100 million to the Cancer Stem Cell Consortium, which will work with CIRM on the effort.
wow. this makes it so real
My sister found this when she googled me the other day.
It's funny how something can be simultaneously extremely cool and utterly terrifying.
That's not the final title and it's not coming out until the spring of 2009. Even so, I am embarassed to say how many times I have clicked on this link, just to prove to myself it's still there.
It's funny how something can be simultaneously extremely cool and utterly terrifying.
That's not the final title and it's not coming out until the spring of 2009. Even so, I am embarassed to say how many times I have clicked on this link, just to prove to myself it's still there.
Gimp legs
Groggy today I broke down and took the sleep meds the ones I refuse to take anymore since I really could use some sleep (REM / deep sleep), I have not been using the CPAP machine even though I have a new mask (not the full face fighter jet mask) the nasal mask won’t work right now with all the nasal congestion that I have right now. The only problem with taking the sleep medicine if you don’t get to lay horizontal for at least 8 consecutive hours your legs won’t be under you for a few hours when you get up and try to function in the morning.
Wednesday, August 27, 2008
eating cake and the 20 second update
I have been out of town for a couple of days, spending time with friends at their cottage. We were four adults, four boys ranging in age from 17 months to 11 years and five dogs of various ages and sizes. It was barely controlled chaos and absolute bliss.
I am home now. In a few minutes I will turn off the computer and go curl up with a good book and a slice of my friend M.'s divine lemon pound cake (it contains an entire cup of butter and six cups of sugar. That's before icing) Perhaps I'll even have a ice cold cider with the cake.
In other news, I have a new post up at MyBreastCancerNetwork.Com, called "The Challenge of the Twenty Second Update."
I hope you are all enjoying summer's last gasp with your own cold cider and lemon pound cake. Or whatever it is that makes you happy.
I am home now. In a few minutes I will turn off the computer and go curl up with a good book and a slice of my friend M.'s divine lemon pound cake (it contains an entire cup of butter and six cups of sugar. That's before icing) Perhaps I'll even have a ice cold cider with the cake.
In other news, I have a new post up at MyBreastCancerNetwork.Com, called "The Challenge of the Twenty Second Update."
This past week end, I went to a beautiful wedding with my family. In attendance were relatives I hadn’t seen in many years, lots of people I had never met and one of my favourite teachers from grade school.You can read the rest of this post here.I always feel a bit of awkwardness at these kinds of events, as I brace myself for the inevitable questions, “What are you up to these days?” or “What do you do?”
No one wants to drop the c-word at a wedding, least of all me.
I hope you are all enjoying summer's last gasp with your own cold cider and lemon pound cake. Or whatever it is that makes you happy.
NOCC Walk- Long Island Chapter- September 20th, 2008
SAVE THE DATE: NOCC Long Island chapter walk - September 20, 2008 - Wantagh Park, Wantagh, NY.
For More info contact Linda Rosen ( NY, Long Island NOCC Chapter)
Phone: 631-672-2027; nyli.nocc@ovarian.org
Sicko
Last year, while going through Hyper CVAD and an auto stem cell transplant, I discovered that I'm stronger than I thought.
This year, while battling my mystery illnesses, I'm discovering that I'm weaker than I thought.
Seeing myself as strong and resilient was a big part of my image during chemo treatment. My goal was to keep the pep in my step and to never look or act like a "sick" person, regardless of how I felt. I was able to throw a baby shower for my god baby on a Saturday afternoon and then drive myself to the evaluation and treatment center at CoH for bloodwork. I found out that my hemoglobin had hit an all-time low of 7.6 (12 is low normal). Who knew? Certainly not me. So I spent my Saturday night getting a transfusion while the staff played disco tunes from the 70's. Memorable evening!
As strange as this may sound, I especially didn't like my doctors and nursing staff to see me as "sick." The nursing staff often joked, "Is she a patient or visitor?" because I always wore comfortable but stylish yoga-inspired clothes, not hospital gowns or pajamas during my stays at Hotel Hope. God forbid that I should look like a patient. I loved it when Dr. Forman said things like, "I thought you would look sick as a result of (fill in the blank), but you don't."
But all of that has changed. A couple weeks ago Dr. Forman saw me for the first time being transported in a wheel chair. I was mortified and half jokingly hid my face from him.
Last week my friend Karen brought me out to the City of Hope. I walked on my own steam to the clinic exam room and then asked one of the staff to let Karen know where I was. She and the nurse came in with the wheel chair. I asked the nurse to please remove the incriminating device, but she explained that they used it to carry Karen's bags. I did not want Dr. Forman to think that I had to be wheeled into the exam room. Finally, I said to Karen, "Please, you have to get that out of here. It's very distressing for me." I look at it as a mocking symbol of my weakness.
Now when I say that I don't want my doctors to view me as "sick," I mean that I don't want to LOOK sick. I think I've been very good at communicating all of my symptoms, but I do it in a clinical way, as though I'm talking about someone else. But with my stick-thin frame and low energy level, I'm not fooling anyone. I no longer look like a "well" person.
After I recovered from my lung damage in January, I felt invincible. After nearly a year of treatment and a successful remission, I felt I could do anything. I pushed myself physically, professionally and personally. I took risks. I was not afraid of failure. I decided to start my own marketing consulting business. I made a life-changing personal decision about a relationship. I pole danced in front of 300 people.
All of that suddenly changed in July, at the onset of this illness. Now I'm plotting how to get up and go to the bathroom without passing out.
I know that there must be a lesson in all of this somewhere for me. I just don't know what it is.
This year, while battling my mystery illnesses, I'm discovering that I'm weaker than I thought.
Seeing myself as strong and resilient was a big part of my image during chemo treatment. My goal was to keep the pep in my step and to never look or act like a "sick" person, regardless of how I felt. I was able to throw a baby shower for my god baby on a Saturday afternoon and then drive myself to the evaluation and treatment center at CoH for bloodwork. I found out that my hemoglobin had hit an all-time low of 7.6 (12 is low normal). Who knew? Certainly not me. So I spent my Saturday night getting a transfusion while the staff played disco tunes from the 70's. Memorable evening!
As strange as this may sound, I especially didn't like my doctors and nursing staff to see me as "sick." The nursing staff often joked, "Is she a patient or visitor?" because I always wore comfortable but stylish yoga-inspired clothes, not hospital gowns or pajamas during my stays at Hotel Hope. God forbid that I should look like a patient. I loved it when Dr. Forman said things like, "I thought you would look sick as a result of (fill in the blank), but you don't."
But all of that has changed. A couple weeks ago Dr. Forman saw me for the first time being transported in a wheel chair. I was mortified and half jokingly hid my face from him.
Last week my friend Karen brought me out to the City of Hope. I walked on my own steam to the clinic exam room and then asked one of the staff to let Karen know where I was. She and the nurse came in with the wheel chair. I asked the nurse to please remove the incriminating device, but she explained that they used it to carry Karen's bags. I did not want Dr. Forman to think that I had to be wheeled into the exam room. Finally, I said to Karen, "Please, you have to get that out of here. It's very distressing for me." I look at it as a mocking symbol of my weakness.
Now when I say that I don't want my doctors to view me as "sick," I mean that I don't want to LOOK sick. I think I've been very good at communicating all of my symptoms, but I do it in a clinical way, as though I'm talking about someone else. But with my stick-thin frame and low energy level, I'm not fooling anyone. I no longer look like a "well" person.
After I recovered from my lung damage in January, I felt invincible. After nearly a year of treatment and a successful remission, I felt I could do anything. I pushed myself physically, professionally and personally. I took risks. I was not afraid of failure. I decided to start my own marketing consulting business. I made a life-changing personal decision about a relationship. I pole danced in front of 300 people.
All of that suddenly changed in July, at the onset of this illness. Now I'm plotting how to get up and go to the bathroom without passing out.
I know that there must be a lesson in all of this somewhere for me. I just don't know what it is.
To Walk or Not to Walk
I do believe that my lungs are improving. The progress is slow, but it's there.
I am still so far away from being a fully functioning human being. I still have to elaborately plot out trips to the bathroom to avoid a blackout spell. I'm still out of breath after a flight of stairs. Even pleasurable activities, like going for a mani-pedi with a friend, tire me out.
With that being said, I'm looking at my September calendar and trying to figure out which engagements to keep and which to strike. The most important date is September 14, the night of the Leukemia & Lymphoma Society's Light the Night Walk. That's a little more than two weeks away. Will I be up to an action-packed evening that culminates in a 2.8 mile walk? Ordinarily, that would be nothing, but I haven't walked for more than 200 paces without a break for the last month.
I should be in high recruitment mode, trying to build up my team of walkers, but now I don't know what to do. I don't know whether to forge ahead under the assumption that I will have bounced back completely by then, or just say, "I raised $550 and that will have to be good enough." Maybe I should see how I feel in one week. Maybe I should recruit walkers with the caveat that I may not be there.
I would really appreciate your thoughts on this.
I am still so far away from being a fully functioning human being. I still have to elaborately plot out trips to the bathroom to avoid a blackout spell. I'm still out of breath after a flight of stairs. Even pleasurable activities, like going for a mani-pedi with a friend, tire me out.
With that being said, I'm looking at my September calendar and trying to figure out which engagements to keep and which to strike. The most important date is September 14, the night of the Leukemia & Lymphoma Society's Light the Night Walk. That's a little more than two weeks away. Will I be up to an action-packed evening that culminates in a 2.8 mile walk? Ordinarily, that would be nothing, but I haven't walked for more than 200 paces without a break for the last month.
I should be in high recruitment mode, trying to build up my team of walkers, but now I don't know what to do. I don't know whether to forge ahead under the assumption that I will have bounced back completely by then, or just say, "I raised $550 and that will have to be good enough." Maybe I should see how I feel in one week. Maybe I should recruit walkers with the caveat that I may not be there.
I would really appreciate your thoughts on this.
More Drugs....
Normal day, I just got the all clear from my nasal wash cultures so I don’t have any virus or there was nothing that showed up in the test that the transplant doctors performed on yesterday.
I visited an endocrinologist on yesterday to discuss some of the changes I felt needed to be addressed and to also look into the steroid diabetes most of us transplant patients get. He is of the opinion that many of the side effects that I discussed were due to the hard chemo that I received more than two years ago. It will take years to HOPEFULLY recover from that RAT POISION. I was given a new drug to counteract some of the effects that are going on, he said that the chemo messed up my hormones my response was “What chu talkin’ bout Willis, pouting) they want me to take a hormone med (Testosterone pill/ or shoot; I will take the pill for $200 Alex the shot is self given with a LARGE gauge needle and they hurt like HELL take my word for it)… I am now taking Testosterone and steroids and lifting weight (can you say angry man in the gym, but I have a doctor’s note so it is okay)
Still waiting for the results of my A1C test from Friday.
I visited an endocrinologist on yesterday to discuss some of the changes I felt needed to be addressed and to also look into the steroid diabetes most of us transplant patients get. He is of the opinion that many of the side effects that I discussed were due to the hard chemo that I received more than two years ago. It will take years to HOPEFULLY recover from that RAT POISION. I was given a new drug to counteract some of the effects that are going on, he said that the chemo messed up my hormones my response was “What chu talkin’ bout Willis, pouting) they want me to take a hormone med (Testosterone pill/ or shoot; I will take the pill for $200 Alex the shot is self given with a LARGE gauge needle and they hurt like HELL take my word for it)… I am now taking Testosterone and steroids and lifting weight (can you say angry man in the gym, but I have a doctor’s note so it is okay)
Still waiting for the results of my A1C test from Friday.
Tuesday, August 26, 2008
Still Waters
I just realized that my laptop power cord wasn't plugged in this whole time I've been on the computer. I thought it was. I hate it when shit like that happens. Like, you think things are as they should be--time to power up--but actually, the energy is draining. I think you might know where I'm going with this.
Part of me being a bad blogger here is that I feel embarrassed and ashamed. The whole time I was going through chemo, radiation, and then the lead up to surgery, I was kind of my own best cheerleader. I remember thinking, "I will get through this, and I will laugh at cancer, and I will kick its ass, and when it's over, I will get back to my crazy old self, except even crazier--and it will be so...so...FUCKING CRAZY! but in a good way."
Also, when the shit's over, everyone who loves you wants to be happy for you that you're done with the bullshit and the pain, that you can move on, and everyone thinks you will, and everything will be fine.
But yeah, it's not fine. In some ways, it's worse. Look, this is how it goes. I'm
suppose to be better. I fucking beat cancer! But...but. I feel like shit. I'm tired all the time. I want to do nothing; I have zero motivation. This, then, makes me feel guilty. I got a second chance, and what I do want to do with life? A lot of times, nothing. But I should be getting out there, writing like crazy, living life and loving it.
In terms of how my emotional/spiritual/motivational/inspirational state of mind goes, I can't deny that there's no constant--and I'm a big fan of denial. I want to do so much, but I'm so freakin' tired! I want to get out there, but I want to hide. I just want to sleep...a lot.
And I still have my nice little fatty marble stone thing. It's okay. I'm only 10% worried about it.
When I was at Inspire Health a couple weeks ago, I was looking at their library. They switched it up and rearranged everything, so suddenly, the books I looked at for almost a year seemed new. As I was scanning the shelves, I saw two books sitting side by side: Picking Up the Pieces: Moving Forward After Surviving Cancer and Dancing in Limbo: Making Sense of Life After Cancer. My immediate thought was, "Okay, okay, I get it. I see the sign." Here's why: when I had what I thought would be my last appointment with my oncologist, she went to great lengths to prepare me for the post-treatment crap that is typically experienced--the funk that no one anticipates. She wrote down these two books and said that they would help me greatly on my journey after cancer. But being stubborn and cocky like I can be on the rare occasion, I put the paper away and didn't bother with the books. But lo and behold, there they were, sitting there, just waiting for me at Inspire, telling me to take them.
So I've been reading them in chunks, trying to make sense out of why I still feel like shit. Why do I have anger, bitterness, fatigue, depression, unmotivation, survivor's guilt, bullshit and puke? But I also have happiness, gratitude, and drive. All this together is one big mushy yuck blah. And a lot of times, I just want turn it all off.
Alas, next week, I have to end the pity party and get back to business. School starts--for everyone in our household. Chloe's off to kindergarten, Mylo's off to UBC daycare full-time, Henry's back to being his academic rockstar awesomeness (not like he ever quit), and me--I'm back to the MFA program. Life must move on. I'm terrified, but it's all systems go.
Despite my whining, I will admit the summer has been quite rockin'. We've gone to many wonderful places and done a lot of amazing things, and to wrap it all up, we went on a grownups-only gourmet kayaking trip last weekend. The trip was organized and offered through Edible BC and Blue Planet Kayaking Adventures. It was freaking awesome!!!! You know how I like to bitch and complain? I cannot complain about one single thing on this trip. We were even blessed with gorgeous weather the first two days and, yes, BLESSED, with rain on the day we had to paddle back and catch the ferry. I was glad we got some rain so we could experience the excitement of choppy waters, almost-killer waves, and feeling the rain beat down on our heads.
We started off at 5 am on Friday. Henry and I picked up Jim and Lou-Anne; Marty and Letti picked up Trish and Brent; and Heidy and Greg headed out on their own. We took the ferry from Horseshoe Bay to Nanaimo at 6:30 am. We got to Nanaimo at 8 am, where we met James Bray, our gourmet chef/kayaking extraordinaire tour guide. He packed us all into this full-sized van, towing a trailer of kayaks, and we drove to the boat launch site, where we met up with Kirsten, his assistant. Everyone was all smiles and eager to begin our adventure!
Marty and Letti had the most experience kayaking, and the rest of us had little or no experience at all (I'd belong to the latter category). But as the sun shone down on us, we were all confident we'd do alright.
We paddled for about 3 hours to the campsite at Pirate's Cove Park on De Courcy Island. We passed gorgeous sandstone caves and cliffs. A lot of the cliff faces looked alien and mysterious yet undeniably beautiful.
Here's Jim paddling by one of those alien formations.
Our guides, James and Kirsten, go by the "boob" rocks. Boobs of all shapes, sizes, and ages!
Letti's checking out the boobs. After all, that's what this trip was about!
When we got to the campsite, James whipped up a delicious and delicate tuna sashimi nicoise salad, or something fancy like that. It was good.
Then we set up our tents, got settled in, and started in on the wine. Mind you, we managed to bring 5 bags of wine with us in those kayaks (cuz we're classy), not to mention the legit bottles of wine that James brought with him for dinner, and our bottle of Dead Arm. That added up to, like, 30 LITRES of wine. In case you don't know how much that is, it's a lot. It's obscene.
After a nice hike through the park, we ate dinner. And part of the dinner was this lovely cheese plate. Unfortunately, I was too busy getting plastered to eat any cheese, but my kayak mates finished the whole thing off.
When dinner was finished, we engaged in a furious game of Uno. Even in my extremely drunken stupor, I managed to lay down cards as I was passed out on the picnic table. At one point, I had to go #2 in the outhouse. I was pitch-black dark, and I had my headlamp on. So without telling anyone where I was going or what I was doing (I later found out they thought I was leaving the table to pass out in the tent), I headed off toward the outhouse. In order to get to the outhouse, one had to go down a path, go down a considerable flight of stairs, go up another path, and go up a ramp to the potty. So, I did all this, but when I got to the ramp and looked up at the outhouse, my immediate thought was: "I can't go in there. There's a serial killer in there. I've seen the movies. I will be hacked up into little pieces and eaten." Fear--no, terror--struck, and I started telling myself, "Stupid! How could you come down here by yourself! Now you're going to be killed!" So I turned to go back to the group and get Henry, but all of a sudden, I had no idea where I was! I looked left--there was a path. I looked right--there was another path. I went with my gut, and--whew!--there were the stairs to go back up to the tents.
When I got back to the picnic table, everyone was laughing at me. They were watching my little bobble light the whole time and wondering what the hell I was doing, especially when I turned around without going to the bathroom. Anyway, it was time to call it a night (yeah, after I took Henry back down to the outhouse with me and did my business).
The next morning, I was the first one to wake up despite my killer hangover. But thanks to James's delicious cheese-stuffed French toast and coffee, we were all ready to go to our day's destination, Blackberry Point on Valdes Island.
Here's a group shot of us enroute:
Yes, I did the single kayak thing on the way to Blackberry. Let me tell you--it was so hard! You definitely can't sit back and cruise and let someone else do the work for a bit when you're by yourself. Good thing the water was calm and the weather was nice.
And here are some logs on the beach, including Henry as a log.
When we got back to De Courcy, James whipped up a lovely halibut dinner.
We definitely ate, drank, and were merry that night. And luckily for us, my sister-in-law Trish had the foresight to buy TowTabs. Yes, Brent made fun of her for buying these, but he was soon singing her praises, as you can see in this video. And as asked on their website, "How do you TowTab? On a hike, with your bike, when you fish, when you wish," we TowTabbed like crazy. It's like a Dr. Seuss invention.
If you think TowTabs are weird, hold on. This is even weirder. So we're all guffawing our asses off (GOAO, I believe the cyberspeak would be), when this cute young couple passes by. We saw them before but never chatted. So we started talking and invited them for a drink. Then the young man, Eli, and I were talking about why our group was on this trip. I said it was because I was diagnosed with cancer last year and we were celebrating life, so he said that his mom goes to an acupuncturist named Gerard! I said that I do too! And then I realized that I've seen him and his mom before at Inspire! Freakin' crazy!!! It was like totally full circle at that moment.
We had a lovely time with Eli and Adrienne, and eventually, we got them sufficiently wasted, and they went back to their cabin to do what I imagine young people must do.
And other than Lou-Anne rolling down a cliff and hurting herself, but not too much, thank god, we had an awesome time! We want to do a reunion trip! Incredible!
Here are some souvenir shells from the trip, holding our own home-raised, organic cilantro-fed caviar d'escargot. Yes, that's right. I ate my pet snails' babies. They were good. (I will post some snail pics on Brandy's Blog soon.
So the moral of this epic story: life can be shitty; just don't go to the outhouse alone in the dark, and you'll be okay.
Part of me being a bad blogger here is that I feel embarrassed and ashamed. The whole time I was going through chemo, radiation, and then the lead up to surgery, I was kind of my own best cheerleader. I remember thinking, "I will get through this, and I will laugh at cancer, and I will kick its ass, and when it's over, I will get back to my crazy old self, except even crazier--and it will be so...so...FUCKING CRAZY! but in a good way."
Also, when the shit's over, everyone who loves you wants to be happy for you that you're done with the bullshit and the pain, that you can move on, and everyone thinks you will, and everything will be fine.
But yeah, it's not fine. In some ways, it's worse. Look, this is how it goes. I'm
suppose to be better. I fucking beat cancer! But...but. I feel like shit. I'm tired all the time. I want to do nothing; I have zero motivation. This, then, makes me feel guilty. I got a second chance, and what I do want to do with life? A lot of times, nothing. But I should be getting out there, writing like crazy, living life and loving it.
In terms of how my emotional/spiritual/motivational/inspirational state of mind goes, I can't deny that there's no constant--and I'm a big fan of denial. I want to do so much, but I'm so freakin' tired! I want to get out there, but I want to hide. I just want to sleep...a lot.
And I still have my nice little fatty marble stone thing. It's okay. I'm only 10% worried about it.
When I was at Inspire Health a couple weeks ago, I was looking at their library. They switched it up and rearranged everything, so suddenly, the books I looked at for almost a year seemed new. As I was scanning the shelves, I saw two books sitting side by side: Picking Up the Pieces: Moving Forward After Surviving Cancer and Dancing in Limbo: Making Sense of Life After Cancer. My immediate thought was, "Okay, okay, I get it. I see the sign." Here's why: when I had what I thought would be my last appointment with my oncologist, she went to great lengths to prepare me for the post-treatment crap that is typically experienced--the funk that no one anticipates. She wrote down these two books and said that they would help me greatly on my journey after cancer. But being stubborn and cocky like I can be on the rare occasion, I put the paper away and didn't bother with the books. But lo and behold, there they were, sitting there, just waiting for me at Inspire, telling me to take them.
So I've been reading them in chunks, trying to make sense out of why I still feel like shit. Why do I have anger, bitterness, fatigue, depression, unmotivation, survivor's guilt, bullshit and puke? But I also have happiness, gratitude, and drive. All this together is one big mushy yuck blah. And a lot of times, I just want turn it all off.
Alas, next week, I have to end the pity party and get back to business. School starts--for everyone in our household. Chloe's off to kindergarten, Mylo's off to UBC daycare full-time, Henry's back to being his academic rockstar awesomeness (not like he ever quit), and me--I'm back to the MFA program. Life must move on. I'm terrified, but it's all systems go.
Despite my whining, I will admit the summer has been quite rockin'. We've gone to many wonderful places and done a lot of amazing things, and to wrap it all up, we went on a grownups-only gourmet kayaking trip last weekend. The trip was organized and offered through Edible BC and Blue Planet Kayaking Adventures. It was freaking awesome!!!! You know how I like to bitch and complain? I cannot complain about one single thing on this trip. We were even blessed with gorgeous weather the first two days and, yes, BLESSED, with rain on the day we had to paddle back and catch the ferry. I was glad we got some rain so we could experience the excitement of choppy waters, almost-killer waves, and feeling the rain beat down on our heads.
We started off at 5 am on Friday. Henry and I picked up Jim and Lou-Anne; Marty and Letti picked up Trish and Brent; and Heidy and Greg headed out on their own. We took the ferry from Horseshoe Bay to Nanaimo at 6:30 am. We got to Nanaimo at 8 am, where we met James Bray, our gourmet chef/kayaking extraordinaire tour guide. He packed us all into this full-sized van, towing a trailer of kayaks, and we drove to the boat launch site, where we met up with Kirsten, his assistant. Everyone was all smiles and eager to begin our adventure!
Marty and Letti had the most experience kayaking, and the rest of us had little or no experience at all (I'd belong to the latter category). But as the sun shone down on us, we were all confident we'd do alright.
We paddled for about 3 hours to the campsite at Pirate's Cove Park on De Courcy Island. We passed gorgeous sandstone caves and cliffs. A lot of the cliff faces looked alien and mysterious yet undeniably beautiful.
Here's Jim paddling by one of those alien formations.
Our guides, James and Kirsten, go by the "boob" rocks. Boobs of all shapes, sizes, and ages!
Letti's checking out the boobs. After all, that's what this trip was about!
When we got to the campsite, James whipped up a delicious and delicate tuna sashimi nicoise salad, or something fancy like that. It was good.
Then we set up our tents, got settled in, and started in on the wine. Mind you, we managed to bring 5 bags of wine with us in those kayaks (cuz we're classy), not to mention the legit bottles of wine that James brought with him for dinner, and our bottle of Dead Arm. That added up to, like, 30 LITRES of wine. In case you don't know how much that is, it's a lot. It's obscene.
After a nice hike through the park, we ate dinner. And part of the dinner was this lovely cheese plate. Unfortunately, I was too busy getting plastered to eat any cheese, but my kayak mates finished the whole thing off.
When dinner was finished, we engaged in a furious game of Uno. Even in my extremely drunken stupor, I managed to lay down cards as I was passed out on the picnic table. At one point, I had to go #2 in the outhouse. I was pitch-black dark, and I had my headlamp on. So without telling anyone where I was going or what I was doing (I later found out they thought I was leaving the table to pass out in the tent), I headed off toward the outhouse. In order to get to the outhouse, one had to go down a path, go down a considerable flight of stairs, go up another path, and go up a ramp to the potty. So, I did all this, but when I got to the ramp and looked up at the outhouse, my immediate thought was: "I can't go in there. There's a serial killer in there. I've seen the movies. I will be hacked up into little pieces and eaten." Fear--no, terror--struck, and I started telling myself, "Stupid! How could you come down here by yourself! Now you're going to be killed!" So I turned to go back to the group and get Henry, but all of a sudden, I had no idea where I was! I looked left--there was a path. I looked right--there was another path. I went with my gut, and--whew!--there were the stairs to go back up to the tents.
When I got back to the picnic table, everyone was laughing at me. They were watching my little bobble light the whole time and wondering what the hell I was doing, especially when I turned around without going to the bathroom. Anyway, it was time to call it a night (yeah, after I took Henry back down to the outhouse with me and did my business).
The next morning, I was the first one to wake up despite my killer hangover. But thanks to James's delicious cheese-stuffed French toast and coffee, we were all ready to go to our day's destination, Blackberry Point on Valdes Island.
Here's a group shot of us enroute:
Yes, I did the single kayak thing on the way to Blackberry. Let me tell you--it was so hard! You definitely can't sit back and cruise and let someone else do the work for a bit when you're by yourself. Good thing the water was calm and the weather was nice.
And here are some logs on the beach, including Henry as a log.
When we got back to De Courcy, James whipped up a lovely halibut dinner.
We definitely ate, drank, and were merry that night. And luckily for us, my sister-in-law Trish had the foresight to buy TowTabs. Yes, Brent made fun of her for buying these, but he was soon singing her praises, as you can see in this video. And as asked on their website, "How do you TowTab? On a hike, with your bike, when you fish, when you wish," we TowTabbed like crazy. It's like a Dr. Seuss invention.
If you think TowTabs are weird, hold on. This is even weirder. So we're all guffawing our asses off (GOAO, I believe the cyberspeak would be), when this cute young couple passes by. We saw them before but never chatted. So we started talking and invited them for a drink. Then the young man, Eli, and I were talking about why our group was on this trip. I said it was because I was diagnosed with cancer last year and we were celebrating life, so he said that his mom goes to an acupuncturist named Gerard! I said that I do too! And then I realized that I've seen him and his mom before at Inspire! Freakin' crazy!!! It was like totally full circle at that moment.
We had a lovely time with Eli and Adrienne, and eventually, we got them sufficiently wasted, and they went back to their cabin to do what I imagine young people must do.
And other than Lou-Anne rolling down a cliff and hurting herself, but not too much, thank god, we had an awesome time! We want to do a reunion trip! Incredible!
Here are some souvenir shells from the trip, holding our own home-raised, organic cilantro-fed caviar d'escargot. Yes, that's right. I ate my pet snails' babies. They were good. (I will post some snail pics on Brandy's Blog soon.
So the moral of this epic story: life can be shitty; just don't go to the outhouse alone in the dark, and you'll be okay.
a case of the cancerous maybes
the maybes are the sickness that spreads. the hypothetical continues to plague my thoughts and those of anyone close.
I would like to know if this pain growing inside me will be my downfall. I would like to know, grieve, and get the hell on with it. I hate indecision. I hate the middle.
I would like to know if this pain growing inside me will be my downfall. I would like to know, grieve, and get the hell on with it. I hate indecision. I hate the middle.
Ironic Death
Dave Freeman, author of 100 Things to Do Before You Die, didn't get to complete his bucket list before kicking the bucket. At age 47, he died as the result of a fall and head injury.
He had only completed half of his list.
(For my take on the "Before You Die" publishing mania and my quest for the perfect purse, click here.)
He had only completed half of his list.
(For my take on the "Before You Die" publishing mania and my quest for the perfect purse, click here.)
National Ovarian Cancer Awareness Month, 2008 -A Proclamation by the President of the United States of America
National Ovarian Cancer Awareness Month, 2008 A Proclamation by the President of the United States of America
During National Ovarian Cancer Awareness Month, we remember those whose lives have been affected by this deadly disease, and we underscore our commitment to battling ovarian cancer for the sake of women around the world.
Each year, thousands of American women are diagnosed with ovarian cancer. Many will lose their lives to this disease. Because ovarian cancer is often diagnosed at an advanced stage, it is vital for women to make regular visits to their doctors for screenings and to discuss risk factors and warning signs. Early detection is the best way to help doctors diagnose cancer before it has a chance to spread. It also makes treatment more effective and increases the chances for survival. I encourage all women to learn more about preventive measures and screening options that may help to save their lives.
America leads the world in medical research, and my Administration remains dedicated to the fight against ovarian cancer. I signed the "Gynecologic Cancer Education and Awareness Act of 2005," or "Johanna's Law," that helps to raise awareness among women and health care providers about female reproductive cancers. Additionally, the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention are conducting important research to help make the innovative advances we need in order to eradicate this disease. NIH's Cancer Genome Atlas is also helping researchers gain a greater understanding of the genetic sources of cancer. Together, we will continue building on our progress until there is a cure for cancer.
As we observe National Ovarian Cancer Awareness Month, we honor those who have fought this disease. We also recognize the compassionate caregivers, doctors, and researchers who are dedicated to preventing, detecting, and treating ovarian cancer.
NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2008 as National Ovarian Cancer Awareness Month. I call upon government officials, businesses, communities, health care professionals, educators, volunteers, and the people of the United States to continue our Nation's strong commitment to preventing and treating ovarian cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this twenty-sixth day of August, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.
GEORGE W. BUSH
During National Ovarian Cancer Awareness Month, we remember those whose lives have been affected by this deadly disease, and we underscore our commitment to battling ovarian cancer for the sake of women around the world.
Each year, thousands of American women are diagnosed with ovarian cancer. Many will lose their lives to this disease. Because ovarian cancer is often diagnosed at an advanced stage, it is vital for women to make regular visits to their doctors for screenings and to discuss risk factors and warning signs. Early detection is the best way to help doctors diagnose cancer before it has a chance to spread. It also makes treatment more effective and increases the chances for survival. I encourage all women to learn more about preventive measures and screening options that may help to save their lives.
America leads the world in medical research, and my Administration remains dedicated to the fight against ovarian cancer. I signed the "Gynecologic Cancer Education and Awareness Act of 2005," or "Johanna's Law," that helps to raise awareness among women and health care providers about female reproductive cancers. Additionally, the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention are conducting important research to help make the innovative advances we need in order to eradicate this disease. NIH's Cancer Genome Atlas is also helping researchers gain a greater understanding of the genetic sources of cancer. Together, we will continue building on our progress until there is a cure for cancer.
As we observe National Ovarian Cancer Awareness Month, we honor those who have fought this disease. We also recognize the compassionate caregivers, doctors, and researchers who are dedicated to preventing, detecting, and treating ovarian cancer.
NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2008 as National Ovarian Cancer Awareness Month. I call upon government officials, businesses, communities, health care professionals, educators, volunteers, and the people of the United States to continue our Nation's strong commitment to preventing and treating ovarian cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this twenty-sixth day of August, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.
GEORGE W. BUSH
BEER:OMMEGANG CHOCOLATE INDULGENCE
Come in today and grab some Ommegang Chocolate Indulgence ($13.99/750mL). Unless you don't like chocolate, but I find that hard to believe.
cheers!
dave
A major award
Today after school I found two fun things in WCK's backpack. The first was a "Super Student" award. In the blank explaining why WCK received this award, the teacher had written "Friend to others." I was so proud, and I got all misty-eyed thinking of my sweet little girl actually getting an award because she is such a sweet little girl.
Of course, WCK remains tight-lipped about school. She would make an excellent international spy someday. She denied any knowledge of this award or anything she might have done to earn this award. (Did she pat someone gently on the back when he/she was sad? Share her muffin? Carry other preschoolers out of a burning building?) She also wouldn't say if any other kids got an award, too. It's entirely possible that everyone in the class got the "Friend To Others" award. The award is sponsored by Mimi's Cafe (yes, my three-year-old's friendship award has a corporate sponsor), and the recipient gets a free kids' meal. I suppose everyone in the class could have been named a good friend as part of the promotion. At least we have an excuse to go out to dinner now. I mean, we'd be bad parents if we didn't celebrate our child's major award, wouldn't we?
The next fun thing was a Scholastic book order form. Book orders! I hadn't thought about these in years -- decades maybe -- but book orders were probably my favorite part of elementary school. My parents always let me order some books every month. I still remember filling out the form and checking the little boxes. Then there was the thrill of coming in from recess and finding a shiny, smooth, brand new paperback book or two on my desk. Book order day was THE BEST DAY EVER. I also remember that the book-order books sometimes came with free posters of kittens or puppies or ponies or things like that. Anybody else remember this?
Anyway, I had no idea that schools still did this or that three-year-olds could get book orders, too. The order form still looks exactly the same. WCK and I spent a long time after school browsing through the little catalog, trying to decide what to get. Should we get the set of dinosaur books or the set of Halloween books? Decisions, decisions. I suppose we can discuss it further over dinner at Mimi's Cafe.
Of course, WCK remains tight-lipped about school. She would make an excellent international spy someday. She denied any knowledge of this award or anything she might have done to earn this award. (Did she pat someone gently on the back when he/she was sad? Share her muffin? Carry other preschoolers out of a burning building?) She also wouldn't say if any other kids got an award, too. It's entirely possible that everyone in the class got the "Friend To Others" award. The award is sponsored by Mimi's Cafe (yes, my three-year-old's friendship award has a corporate sponsor), and the recipient gets a free kids' meal. I suppose everyone in the class could have been named a good friend as part of the promotion. At least we have an excuse to go out to dinner now. I mean, we'd be bad parents if we didn't celebrate our child's major award, wouldn't we?
The next fun thing was a Scholastic book order form. Book orders! I hadn't thought about these in years -- decades maybe -- but book orders were probably my favorite part of elementary school. My parents always let me order some books every month. I still remember filling out the form and checking the little boxes. Then there was the thrill of coming in from recess and finding a shiny, smooth, brand new paperback book or two on my desk. Book order day was THE BEST DAY EVER. I also remember that the book-order books sometimes came with free posters of kittens or puppies or ponies or things like that. Anybody else remember this?
Anyway, I had no idea that schools still did this or that three-year-olds could get book orders, too. The order form still looks exactly the same. WCK and I spent a long time after school browsing through the little catalog, trying to decide what to get. Should we get the set of dinosaur books or the set of Halloween books? Decisions, decisions. I suppose we can discuss it further over dinner at Mimi's Cafe.
Monday, August 25, 2008
I need fat!
I frightened myself tonight. After emerging from the shower, I caught a glimpse of my naked body in the mirror. I wasn't prepared for what I saw - a skeleton with skin.
Yes, I continue to lose weight, in spite of my attempts to consume at least 2,500 calories a day.
I have at least two ideas to put on pounds fast:
Go back to college: Is it true what they say about the "freshman fifteen"? I went from 115 to 135 in my first two months at a small Southern college. Biscuits and gravy. Grits and gravy. Gravy with gravy. Fried gravy. And lots of butter on homemade rolls fresh from the oven. I couldn't get enough.
Eat, Pray, Love: Author Elizabeth Gilbert gained 23 pounds while eating her way through Italy. I can't think of a lovelier way to fatten up.
Yes, I continue to lose weight, in spite of my attempts to consume at least 2,500 calories a day.
I have at least two ideas to put on pounds fast:
Go back to college: Is it true what they say about the "freshman fifteen"? I went from 115 to 135 in my first two months at a small Southern college. Biscuits and gravy. Grits and gravy. Gravy with gravy. Fried gravy. And lots of butter on homemade rolls fresh from the oven. I couldn't get enough.
Eat, Pray, Love: Author Elizabeth Gilbert gained 23 pounds while eating her way through Italy. I can't think of a lovelier way to fatten up.
Squinty = Serious
If you haven't heard, the New Kids on the Block are releasing a new CD on Sept. 2. I'm fighting the urge to pre-order through their web site so it will be delivered right to my door on the very day it is released. I know that would be wrong, but just look at how they're all squinting hauntingly at the camera. You know that means they are serious artists now:
I looked for more details on this CD and found that it will contain a song called "Sexify My Love." A song with a title like that has to be good. In a horrifying way.
I looked for more details on this CD and found that it will contain a song called "Sexify My Love." A song with a title like that has to be good. In a horrifying way.
Property
I dreamed last night I told Mayor Daley that I would pay more property taxes in order to provide hot water and shelter for everyone. (In the dream, the amount I paid was about half what it is in reality.)
I am a homeowner. I have a stake in the city. In the neighborhood. We have boxes on the front porch awaiting pick up by strangers who are moving. (One of the wonders of Craig's List.) The next-door neighbors are selling their house. I told them the boxes would be gone soon, that I didn't want to lower their property value. When I was in junior high, our principal said that if girls wore pants it would lower the property values. In eighth grade there was a protest. I didn't take part. I was too chicken. But a girl named W wore jeans, and in Mrs. F's math class she put her feet on the empty seat in front of her. Mrs. F jumped on it immediately: When girls wear pants they put their feet on the furniture. In school, the desks were always called furniture.
By high school we were wearing cut-off jeans and halter tops, though that principal put a stop to flip flops, then known as shower sandals. It was a safety issue. The principal liked to defy the school district and had a flowery sign over his office that said Love Room. Or something like that. There was a smoking area outside, which was considered progressive. No one brought up the health issue.
I remember a discussion about having police in the school. I don't know why it came up; maybe because drugs were found in lockers. I was on the student council and that was probably where we discussed it. Some of us objected (did I? I don't remember) and the counter argument was, If you're doing nothing wrong, why would it matter? And: If you're driving and you see a cop, what's your reaction? My reaction is I'd rather not see them. I tense up. I check my speed. And is that good or bad?
Now we have cameras at intersections to record erring drivers. When I lived in Miami, I remember there were police cameras on South Beach because there were so many muggings. This was when it was populated by frail, retired needle-trade workers with Yiddish accents. What does the city owe us and what do we owe the city? Chicago is like a nation-state. It could be very democratic, with 50 representatives on the city council. But I think a majority of them were appointed by the mayor. Meanwhile, I have not protested enough that yoga classes were discontinued a year ago at the park district when the teacher retired, and the district still hasn't found a new teacher. The park district is a public body that is supposed to be responsive to citizens. But the citizens needs to make themselves heard.
***
But what is property? Architects see buildings as containers for shapes. I don't believe exactly that property is theft, but most property in the US was originally ill-gotten. We feel that we don't deserve this big house. We also feel a responsibility to keep it up. It's about 110 years old and historic in a general way. We don't know its history. The headquarters at school is a mansion that came with a scrapbook about its history. It was built for the publisher of a long-dead newspaper and Will Rogers came there once to a party. When I went to the Millay Colony for the Arts, I saw that each person who stayed in a room wrote her or his name on the jamb. At another artists colony, Ragdale, the residents write notes in a notebook in each room. We have our say. We note where we were. What we did. I walk down the streets of Chicago thinking about what it looked like 50 years ago, a century ago. Some people go back further, and see prairie grasses and swamp where skyscrapers are now. (In French, gratte-ciel, sky scratcher--aggressive in both languages.) And part of everything growing around us, the trees and fertilized grasses and flowers, are tiny fragments of people who used to live around here. I assume someone somewhere has hypothesized about the process, about how long it takes for a body to decay in the ground, then become part of the atmosphere and material world. We bring dead flowers to decorate graves (we in general, not Jews) and then some caretaker takes them away. Jews leave stones, and eventually the stones become part of the earth and so on.
I am a homeowner. I have a stake in the city. In the neighborhood. We have boxes on the front porch awaiting pick up by strangers who are moving. (One of the wonders of Craig's List.) The next-door neighbors are selling their house. I told them the boxes would be gone soon, that I didn't want to lower their property value. When I was in junior high, our principal said that if girls wore pants it would lower the property values. In eighth grade there was a protest. I didn't take part. I was too chicken. But a girl named W wore jeans, and in Mrs. F's math class she put her feet on the empty seat in front of her. Mrs. F jumped on it immediately: When girls wear pants they put their feet on the furniture. In school, the desks were always called furniture.
By high school we were wearing cut-off jeans and halter tops, though that principal put a stop to flip flops, then known as shower sandals. It was a safety issue. The principal liked to defy the school district and had a flowery sign over his office that said Love Room. Or something like that. There was a smoking area outside, which was considered progressive. No one brought up the health issue.
I remember a discussion about having police in the school. I don't know why it came up; maybe because drugs were found in lockers. I was on the student council and that was probably where we discussed it. Some of us objected (did I? I don't remember) and the counter argument was, If you're doing nothing wrong, why would it matter? And: If you're driving and you see a cop, what's your reaction? My reaction is I'd rather not see them. I tense up. I check my speed. And is that good or bad?
Now we have cameras at intersections to record erring drivers. When I lived in Miami, I remember there were police cameras on South Beach because there were so many muggings. This was when it was populated by frail, retired needle-trade workers with Yiddish accents. What does the city owe us and what do we owe the city? Chicago is like a nation-state. It could be very democratic, with 50 representatives on the city council. But I think a majority of them were appointed by the mayor. Meanwhile, I have not protested enough that yoga classes were discontinued a year ago at the park district when the teacher retired, and the district still hasn't found a new teacher. The park district is a public body that is supposed to be responsive to citizens. But the citizens needs to make themselves heard.
***
But what is property? Architects see buildings as containers for shapes. I don't believe exactly that property is theft, but most property in the US was originally ill-gotten. We feel that we don't deserve this big house. We also feel a responsibility to keep it up. It's about 110 years old and historic in a general way. We don't know its history. The headquarters at school is a mansion that came with a scrapbook about its history. It was built for the publisher of a long-dead newspaper and Will Rogers came there once to a party. When I went to the Millay Colony for the Arts, I saw that each person who stayed in a room wrote her or his name on the jamb. At another artists colony, Ragdale, the residents write notes in a notebook in each room. We have our say. We note where we were. What we did. I walk down the streets of Chicago thinking about what it looked like 50 years ago, a century ago. Some people go back further, and see prairie grasses and swamp where skyscrapers are now. (In French, gratte-ciel, sky scratcher--aggressive in both languages.) And part of everything growing around us, the trees and fertilized grasses and flowers, are tiny fragments of people who used to live around here. I assume someone somewhere has hypothesized about the process, about how long it takes for a body to decay in the ground, then become part of the atmosphere and material world. We bring dead flowers to decorate graves (we in general, not Jews) and then some caretaker takes them away. Jews leave stones, and eventually the stones become part of the earth and so on.
I think I am getting sick
I feel like I am coming down with something I have alot of nasal congestion and drainage (clear), no fever, no shortness of breath, weight is steady, and no releasing of fluid / matter from either end, constant cough, headache.... self diagnosis allergies or some sort of a summer cold.... it is time to pop some new pills after a nasal was.
when boring is good
This is an excerpt from a post I wrote for MyBreastCancerNetwork.Com. I wrote it last Tuesday morning, before chemo:
When I am done, I will crawl off the bed a lot more slowly than I climbed onto it and my friend will take me home. For the next few days, I will feel like I have the flu. As my physical symptoms improve, my mood will worsen. By Friday, I will have to keep reminding myself that my rage and my sorrow are temporary.You can read the rest of this post here.And then Saturday will come and I will feel (more or less) like myself again.
If all goes well, things will continue like this over the next few months. Chemotherapy every four weeks. Clean scans every few months. And my echocardiograms will show that my heart still beats strongly and with regularity.
I am left with little to tell about my life as a cancer patient that is earth shatteringly new. But, as my spouse is quick to point out to me, when you have metastatic cancer of any kind, boring is very good indeed.
Sunday, August 24, 2008
One in a Million
I've been mulling over conversations I had with my pulmonologist (Dr. Horak) and hematologist (Dr. Forman) last Thursday.
Dr. Horak used the term "eosinophillic pneumonia" to describe my condition. It is an extremely rare form of pneumonia that, according to one website, strikes .1 in 100,000. That's one in a million. This condition usually responds quickly (within a week) to Prednisone. But I've been on high-dose Prednisone for 20 days now without lung improvement.
When I met with Dr. Forman, he also talked about the eosinophils, but added that they suspected something else was going on simultaneously. "So we're looking at possibly two very rare things going on with you."
All I could think was, "Which rare thing?" I'm in remission from my "rare"cancer, Mantle Cell Lymphoma. I had to stop treatment for my "rare" skin disorder, Cutis Laxa. (The Minocyclin may still be a suspect.) Now, you mean to tell me I have two more rare things to contend with?
I was elated to be feeling a "little better" on Friday and hoped that this would be a trend, but it hasn't continued. The dizziness is becoming a problem again. Yesterday, I blacked out and found myself lying on the hard ceramic tile in the bathroom. I bruised a leg, scratched an arm and bumped a noggin on the way down.
I'll be back at the City of Hope on Thursday, and we'll have the lab results from a lot of blood tests and we'll see if my lungs are improving.
Dr. Horak used the term "eosinophillic pneumonia" to describe my condition. It is an extremely rare form of pneumonia that, according to one website, strikes .1 in 100,000. That's one in a million. This condition usually responds quickly (within a week) to Prednisone. But I've been on high-dose Prednisone for 20 days now without lung improvement.
When I met with Dr. Forman, he also talked about the eosinophils, but added that they suspected something else was going on simultaneously. "So we're looking at possibly two very rare things going on with you."
All I could think was, "Which rare thing?" I'm in remission from my "rare"cancer, Mantle Cell Lymphoma. I had to stop treatment for my "rare" skin disorder, Cutis Laxa. (The Minocyclin may still be a suspect.) Now, you mean to tell me I have two more rare things to contend with?
I was elated to be feeling a "little better" on Friday and hoped that this would be a trend, but it hasn't continued. The dizziness is becoming a problem again. Yesterday, I blacked out and found myself lying on the hard ceramic tile in the bathroom. I bruised a leg, scratched an arm and bumped a noggin on the way down.
I'll be back at the City of Hope on Thursday, and we'll have the lab results from a lot of blood tests and we'll see if my lungs are improving.
Your Fired???
Friday: didn't do much stayed alive, the girls went to daycare via the car the bike stayed in the garage today (until) I get in better shape. Had a physical today to finish off the final test to satisfy the annual transplant requirements that I didn't satisfy in April of this year. I like this doc. but he might get papers (i.e. fired) reflecting back on the visit I know I make doctors nervous due to my condition ..... but they didn't even take my temp. during the physical.... that is standard even on me. They did do some blood work so I will get to find out the results of my A1C soon (a 3 month snapshot of my blood sugar levels).
Saturday: Ran some sprints / maybe jogged about 10 100's, back pedaling 2 of them ran a few hills/ bumps in the earth (Texas is flat), some push-ups topped off the workout
Sunday: more running and soccer with the girls, Raegan (the oldest) is very competitive and quick tempered, Ravyn listens well and is stubborn.... excellent traits, I like
Saturday: Ran some sprints / maybe jogged about 10 100's, back pedaling 2 of them ran a few hills/ bumps in the earth (Texas is flat), some push-ups topped off the workout
Sunday: more running and soccer with the girls, Raegan (the oldest) is very competitive and quick tempered, Ravyn listens well and is stubborn.... excellent traits, I like
The Question of Subject
If this is a cancer blog, and moreover, a breast cancer blog, then it should be about breast cancer, should it not? But if it is a blog that reflects what it's like to have (and have had) breast cancer, and when your treatment boils down to taking a pill every night, and when you're not thinking about breast cancer 100 percent of your waking and dreaming hours, then does your blog need to be 100 percent about breast cancer? (It's not, has never been.) Do people come to a breast cancer blog expecting to read about Life With Cancer, and grow disappointed learning about Life With a New/Old House? Or is that the message itself: That after breast cancer, there's room for everything else in your life?
But you never forget it entirely. There's that missing breast on the left, for one, and the hair that's shorter than it was two years ago, and there are people who ask, How are you? and then, How ARE you? with that emphasis, that heaviness, as if trying to pry out a secret.
In the news conference I went to for Stand Up 2 Cancer, Elizabeth Edwards said that she felt something in common with anyone who's had cancer. And that's true. I feel the same--that we've gone to that place that used to mean (and still might mean) Death. And we've gone through the same baffling, often impersonal procedures at hospitals. (By talking to one another, we're reasserting our individualities.) Before I had breast cancer, I felt that everyone who had it was going to die before her time. Though rationally, I knew that wasn't necessarily so. I remember hearing about someone who had breast cancer and then seeing her, healthy-seeming, and wondering why there was no sign. Thinking she was faking it--it being her health.
But you never forget it entirely. There's that missing breast on the left, for one, and the hair that's shorter than it was two years ago, and there are people who ask, How are you? and then, How ARE you? with that emphasis, that heaviness, as if trying to pry out a secret.
In the news conference I went to for Stand Up 2 Cancer, Elizabeth Edwards said that she felt something in common with anyone who's had cancer. And that's true. I feel the same--that we've gone to that place that used to mean (and still might mean) Death. And we've gone through the same baffling, often impersonal procedures at hospitals. (By talking to one another, we're reasserting our individualities.) Before I had breast cancer, I felt that everyone who had it was going to die before her time. Though rationally, I knew that wasn't necessarily so. I remember hearing about someone who had breast cancer and then seeing her, healthy-seeming, and wondering why there was no sign. Thinking she was faking it--it being her health.
Friday, August 22, 2008
Ding Dong
Dare I say it? I think the new drugs are working. I think I may have turned the corner today.
I can tell because I didn't break into a cold sweat when the doorbell rang this afternoon. I didn't panic at the thought of going down the stairs and then up the stairs. And I didn't ignore it. I went downstairs, answered the door and turned down a magazine subscription. And then I walked back upstairs. Without collapsing.
What's more, the overwhelming sense of exhaustion seems to be slipping away. I'm slowly getting better!
(PS What does a hematologist order at a bar? A Bloody Mary, of course.)
I can tell because I didn't break into a cold sweat when the doorbell rang this afternoon. I didn't panic at the thought of going down the stairs and then up the stairs. And I didn't ignore it. I went downstairs, answered the door and turned down a magazine subscription. And then I walked back upstairs. Without collapsing.
What's more, the overwhelming sense of exhaustion seems to be slipping away. I'm slowly getting better!
(PS What does a hematologist order at a bar? A Bloody Mary, of course.)
BEER: NEW ARRIVALS 08/22/08
NEW RELEASES THIS WEEK
1. AVERY "ALE TO THE CHIEF" (8.75% Imperial Pale with sweet pineapple notes)-$8.99+tx
2. AVERY "THE KAISER" (10.03% Imperial Oktoberfest Lager-$8.99+tx
3. AVERY "THE BEAST"(16% Imperial Grand Cru made w/blackstrap molasses)-$9.99+tx
COMING SOON
OMMEGANG "CHOCOLATE INDULGENCE-Expected on Tuesday 08/26
Homework assignment
I'm happy to say that the second day of preschool went just as well as the first. WCK was happy to get out of the car and go with her teacher, and she was still in a cheerful mood when I came to pick her up. From what I can gather, she really likes school, although it is hard to get her to tell me all of the details about her day. I usually bombard her with questions as soon as she gets into the car (What story did you read? What did you have for snack? What songs did you sing?), and she'll answer one or two of them before telling me in an annoyed voice, "Mommy, we will talk about this when we get home."
When we get home, she still doesn't want to tell me much, so I have to piece things together. On Tuesday, I asked her if she knew the names of any of the kids in her class, and she said she didn't remember. Later, she was playing with a ball and told me the ball's name was "Madison." I asked if Madison was a friend from her class. She said no. Yesterday, when I picked her up, I noticed the official car line sign in the window of the car behind me said "MADISON." Ah. Then WCK walked out of the school holding hands with a sweet little girl who was, indeed, the famous Madison. There's one mystery solved.
Anyway, WCK has her first official homework assignment. It was actually very challenging for me, which is a little disturbing considering I am 30 years older than the people who are expected to complete this assignment. Next week, the class will be discussing shapes. Half of the class has to bring in two household objects shaped like circles. The other half -- WCK's half -- has to bring in two household objects shaped like triangles.
Do you know how many household objects are shaped like triangles? Zero!
I never realized it until now, but we live in a completely triangle-free home. Look around you. Do you see any triangles? No! You don't! The circle people got off easy. Everything is shaped like a circle. Grab a plate and the lid from a tub of butter and you're good to go. Triangles take much more effort. I was ready to give up and send her to school with a stale tortilla chip and a slice of cold pizza. We finally started digging through her toys and found a sailboat with a triangle-shaped sail, a triangle-shaped wedge of plastic cheese, and, well, an actual triangle. You know, the musical instrument that you tap with a little metal stick.
I think we'll go with the sailboat and the cheese, because I'm sure everybody is going to bring in a musical triangle. I can't really blame them. We lucked out by finding the cheese. I'd love to know what other triangular objects the other parents found, but I'm sure WCK won't tell me.
When we get home, she still doesn't want to tell me much, so I have to piece things together. On Tuesday, I asked her if she knew the names of any of the kids in her class, and she said she didn't remember. Later, she was playing with a ball and told me the ball's name was "Madison." I asked if Madison was a friend from her class. She said no. Yesterday, when I picked her up, I noticed the official car line sign in the window of the car behind me said "MADISON." Ah. Then WCK walked out of the school holding hands with a sweet little girl who was, indeed, the famous Madison. There's one mystery solved.
Anyway, WCK has her first official homework assignment. It was actually very challenging for me, which is a little disturbing considering I am 30 years older than the people who are expected to complete this assignment. Next week, the class will be discussing shapes. Half of the class has to bring in two household objects shaped like circles. The other half -- WCK's half -- has to bring in two household objects shaped like triangles.
Do you know how many household objects are shaped like triangles? Zero!
I never realized it until now, but we live in a completely triangle-free home. Look around you. Do you see any triangles? No! You don't! The circle people got off easy. Everything is shaped like a circle. Grab a plate and the lid from a tub of butter and you're good to go. Triangles take much more effort. I was ready to give up and send her to school with a stale tortilla chip and a slice of cold pizza. We finally started digging through her toys and found a sailboat with a triangle-shaped sail, a triangle-shaped wedge of plastic cheese, and, well, an actual triangle. You know, the musical instrument that you tap with a little metal stick.
I think we'll go with the sailboat and the cheese, because I'm sure everybody is going to bring in a musical triangle. I can't really blame them. We lucked out by finding the cheese. I'd love to know what other triangular objects the other parents found, but I'm sure WCK won't tell me.
When Breathing is a Competitive Sport
In August 2007, while athletes worldwide prepared for the 2008 Olympics, I was engaged in a little personal competition at the City of Hope.
In order to qualify for the Auto Stem Cell Transplant, I had to prove, among other things, that my lungs were in good shape. So off I went for pulmonary testing. The technician clamped a clothes pin on my nose so that I was forced to breathe through my mouth. Then I got to curl my lips around a hose and follow a breathing obstacle course. ("Now inhale. Now blow out all the air. Keep going.") The results are calibrated and analyzed by computer so that the patient receives immediate feedback.
Last year, I was the pulmonary equivalent of Michael Phelps, going for gold in all eight breathing events.
Yesterday, I took the test again. I had to drop out of one of the breathing events because it was too exhausting. And I didn't make the team in any other category. My lungs suck.
But not to worry. My favorite Olympic stories star the "comeback kid," and I'm sure to be one of them.
In order to qualify for the Auto Stem Cell Transplant, I had to prove, among other things, that my lungs were in good shape. So off I went for pulmonary testing. The technician clamped a clothes pin on my nose so that I was forced to breathe through my mouth. Then I got to curl my lips around a hose and follow a breathing obstacle course. ("Now inhale. Now blow out all the air. Keep going.") The results are calibrated and analyzed by computer so that the patient receives immediate feedback.
Last year, I was the pulmonary equivalent of Michael Phelps, going for gold in all eight breathing events.
Yesterday, I took the test again. I had to drop out of one of the breathing events because it was too exhausting. And I didn't make the team in any other category. My lungs suck.
But not to worry. My favorite Olympic stories star the "comeback kid," and I'm sure to be one of them.
beautiful faces
Updated to say that my spouse thinks I should have edited my leg out of the second picture.
Updated again: A very nice reader of this blog cropped the pic for me and I concede that it really does look much better.
Thursday, August 21, 2008
My Absence
I'm sorry to have not posted more recently, but my life has been chaotic lately (but will settle down soon). I love writing here and love the feedback I get....this blog has become very important to me as it connects me with others who share a similar experience. I feel badly when I neglect writing here. I also love to write, and the writing here is therapeutic for me...and if it benefits others also, I KNOW it is a good thing and that I need to be "here".
I left my eldest and firstborn at a college today...three hours away from me. We have been very close, and now that we are apart, I admit to being afraid. Afraid that her life and dreams will lead her away from me and that we will one day become distant and not enjoy the closeness we share now. Afraid that a purpose I've had in being a parent for 18 years will become insignificant, that maybe I will lose my value? I worry that she will make a mistake she will be afraid to tell me about, that she might make a mistake that will alter the course of her life forever and squash her dreams. And control freak that I am, I have to learn to relinquish control of one of my own and to let her take control of her own life now, as she should. I'm sure I am thinking of many more things that I haven't yet put to words. But all day I've easily come to tears. I asked her to please not be sentimental and to be obnoxious as we left so that I wouldn't feel so sad, and she tried, but failed. I've cried on and off all day.
But today made me think of a lot of things. Life is transitions. Transitions and change are normal. They promote growth. Our lives are not meant to be a slow and steady journey along a predictable path...growth only happens when we experience the unpredictable, when change happens. Change in our lives is a constant that we should expect.
I'm sad my child, whom I've loved beyond all measure for 18 years, is beyond my reach. But I know she is where she should be, that my job ultimately was to let her go. Letting go is a transition in successful and honorable parenting. Loving parents are supposed to let their kids fly....even away from them. Real love isn't always holding close.....sometimes real love is in the letting go. Controlling love that hangs on too tightly stifles growth. I don't want to prevent my kids from growing into the people they were meant to be.
In hindsight, though, a cancer diagnosis adds a new twist to every normal life transition. Letting go, or being forced to let go, was something I had to contemplate when I was diagnosed. I faced losing my kids, losing my husband, losing my home, losing my job, losing my health, losing my extended family and friends, losing everything in my life all at once and against my will. I faced a monumental and unimaginable loss. Sometimes now I feel badly that I don't have more sympathy for those who lose jobs or houses. They've only lost a job, only a house. It is a loss, but they haven't lost EVERYTHING the way many I've met with cancer have.
So as hard as it is to let go of my kids, I love that I am able to do it the way nature intended, when I have finished my job of nurturing them to adulthood. When the time is right. I celebrate now that my kids can leave me by their own choice and when the time is right for us to be separated, that I wasn't forced to abandon them 7 years ago. I count my blessings all of the time now.
It's hard now, but I know it could have been so much harder.
I left my eldest and firstborn at a college today...three hours away from me. We have been very close, and now that we are apart, I admit to being afraid. Afraid that her life and dreams will lead her away from me and that we will one day become distant and not enjoy the closeness we share now. Afraid that a purpose I've had in being a parent for 18 years will become insignificant, that maybe I will lose my value? I worry that she will make a mistake she will be afraid to tell me about, that she might make a mistake that will alter the course of her life forever and squash her dreams. And control freak that I am, I have to learn to relinquish control of one of my own and to let her take control of her own life now, as she should. I'm sure I am thinking of many more things that I haven't yet put to words. But all day I've easily come to tears. I asked her to please not be sentimental and to be obnoxious as we left so that I wouldn't feel so sad, and she tried, but failed. I've cried on and off all day.
But today made me think of a lot of things. Life is transitions. Transitions and change are normal. They promote growth. Our lives are not meant to be a slow and steady journey along a predictable path...growth only happens when we experience the unpredictable, when change happens. Change in our lives is a constant that we should expect.
I'm sad my child, whom I've loved beyond all measure for 18 years, is beyond my reach. But I know she is where she should be, that my job ultimately was to let her go. Letting go is a transition in successful and honorable parenting. Loving parents are supposed to let their kids fly....even away from them. Real love isn't always holding close.....sometimes real love is in the letting go. Controlling love that hangs on too tightly stifles growth. I don't want to prevent my kids from growing into the people they were meant to be.
In hindsight, though, a cancer diagnosis adds a new twist to every normal life transition. Letting go, or being forced to let go, was something I had to contemplate when I was diagnosed. I faced losing my kids, losing my husband, losing my home, losing my job, losing my health, losing my extended family and friends, losing everything in my life all at once and against my will. I faced a monumental and unimaginable loss. Sometimes now I feel badly that I don't have more sympathy for those who lose jobs or houses. They've only lost a job, only a house. It is a loss, but they haven't lost EVERYTHING the way many I've met with cancer have.
So as hard as it is to let go of my kids, I love that I am able to do it the way nature intended, when I have finished my job of nurturing them to adulthood. When the time is right. I celebrate now that my kids can leave me by their own choice and when the time is right for us to be separated, that I wasn't forced to abandon them 7 years ago. I count my blessings all of the time now.
It's hard now, but I know it could have been so much harder.
The Trio
A pulmonologist, a hematologist and an infectious disease specialist walk into a bar.
I don't know why I find that set-up funny. I guess it's because I get a kick out of the title "infectious disease specialist," which sounds like something from a Michael Crichton novel. Very ominous.
Or maybe my funny bone is tickled at the thought of seeing my docs out of context. I'm picturing myself sipping a Manhattan at Smitty's. Suddenly, Dr. Horak (pulmonologist in scrubs and Crocs), Dr. Forman (hematologist in chinos and button-downs) and Dr. Dadwal (infectious disease specialist in pristine white lab coat) belly up to the bar together.
(I've never seen one of my doctors in a bar, but I did once run into my gynecologist at Burger Continental, a Middle Eastern restaurant in Pasadena. It was very awkward for both of us because we were embarrassed to be discovered eating in such a mediocre establishment.)
The problem is that I don't have a punch line. And the doctors, three of the best in their fields, still don't have an explanation. They have a lot of "suspicions," but nothing is conclusive.
Sometimes I think I just need to push myself a little harder. At other times, I think I'm trying too hard. But it doesn't seem to matter how much sleep or rest I get; I feel an overwhelming, crippling exhaustion.
And there's nothing funny about that.
(If you have a punch line, I'd love to hear it.)
I don't know why I find that set-up funny. I guess it's because I get a kick out of the title "infectious disease specialist," which sounds like something from a Michael Crichton novel. Very ominous.
Or maybe my funny bone is tickled at the thought of seeing my docs out of context. I'm picturing myself sipping a Manhattan at Smitty's. Suddenly, Dr. Horak (pulmonologist in scrubs and Crocs), Dr. Forman (hematologist in chinos and button-downs) and Dr. Dadwal (infectious disease specialist in pristine white lab coat) belly up to the bar together.
(I've never seen one of my doctors in a bar, but I did once run into my gynecologist at Burger Continental, a Middle Eastern restaurant in Pasadena. It was very awkward for both of us because we were embarrassed to be discovered eating in such a mediocre establishment.)
The problem is that I don't have a punch line. And the doctors, three of the best in their fields, still don't have an explanation. They have a lot of "suspicions," but nothing is conclusive.
Sometimes I think I just need to push myself a little harder. At other times, I think I'm trying too hard. But it doesn't seem to matter how much sleep or rest I get; I feel an overwhelming, crippling exhaustion.
And there's nothing funny about that.
(If you have a punch line, I'd love to hear it.)
food meme
Recovering from chemo always provides me with an excuse to spend time online getting caught up on the blogs that I love. I am stealing this meme from Average Jane, who also posted the following instructions:
1) Copy this list into your blog or journal, including these instructions.
2) Bold all the items you’ve eaten.
3) Cross out any items that you would never consider eating.
4) Optional extra: Post a comment at www.verygoodtaste.co.uk linking to your results.
It took me a while to do (I cut myself some slack when I am in my jammies for days on end) but it was fun.
And I have the following observations:
1- I don't know as much about food as I thought I did. I had to look a lot of these things up.
2-I am not as adventurous as I was in my younger days. Not sure that I would eat frogs' legs now. Or that I would have turned down head cheese, had I been offered it when I was younger.
The VGT Omnivore’s Hundred:
1) Copy this list into your blog or journal, including these instructions.
2) Bold all the items you’ve eaten.
3) Cross out any items that you would never consider eating.
4) Optional extra: Post a comment at www.verygoodtaste.co.uk linking to your results.
It took me a while to do (I cut myself some slack when I am in my jammies for days on end) but it was fun.
And I have the following observations:
1- I don't know as much about food as I thought I did. I had to look a lot of these things up.
2-I am not as adventurous as I was in my younger days. Not sure that I would eat frogs' legs now. Or that I would have turned down head cheese, had I been offered it when I was younger.
The VGT Omnivore’s Hundred:
1. Venison
2. Nettle tea
3. Huevos rancheros
4. Steak tartare
5. Crocodile
6. Black pudding
7. Cheese fondue
8. Carp
9. Borscht
10. Baba ghanoush
11. Calamari
12. Pho
13. PB&J sandwich
14. Aloo gobi
15. Hot dog from a street cart
16. Epoisses
17. Black truffle
18. Fruit wine made from something other than grapes
19. Steamed pork buns
20. Pistachio ice cream
21. Heirloom tomatoes
22. Fresh wild berries
23. Foie gras
24. Rice and beans
25. Brawn, or head cheese
26. Raw Scotch Bonnet pepper
27. Dulce de leche
28. Oysters
29. Baklava
30. Bagna cauda
31. Wasabi peas
32. Clam chowder in a sourdough bowl
33. Salted lassi
34. Sauerkraut
35. Root beer float
36. Cognac with a fat cigar
37. Clotted cream tea
38. Vodka jelly/Jell-O
39. Gumbo
40. Oxtail
41. Curried goat
42. Whole insects
43. Phaal
44. Goat’s milk
45. Malt whisky from a bottle worth £60/$120 or more
46. Fugu
47. Chicken tikka masala
48. Eel
49. Krispy Kreme original glazed doughnut
50. Sea urchin
51. Prickly pear
52. Umeboshi
53. Abalone
54. Paneer
55. McDonald’s Big Mac Meal
56. Spaetzle
57. Dirty gin martini
58. Beer above 8% ABV
59. Poutine
60. Carob chips
61. S’mores
62. Sweetbreads
63. Kaolin
64. Currywurst
65. Durian
66. Frogs’ legs
67. Beignets, churros, elephant ears or funnel cake
68. Haggis
69. Fried plantain
70. Chitterlings, or andouillette
71. Gazpacho
72. Caviar and blini
73. Louche absinthe
74. Gjetost, or brunost
75. Roadkill
76. Baijiu
77. Hostess Fruit Pie
78. Snail
79. Lapsang souchong
80. Bellini
81. Tom yum
82. Eggs Benedict
83. Pocky
84. Tasting menu at a three-Michelin-star restaurant.
85. Kobe beef
86. Hare
87. Goulash
88. Flowers
89. Horse
90. Criollo chocolate
91. Spam
92. Soft shell crab
93. Rose harissa
94. Catfish
95. Mole poblano
96. Bagel and lox
97. Lobster Thermidor
98. Polenta
99. Jamaican Blue Mountain coffee
100. Snake
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