Nothing much to report today, just a heads up about an article that will be posted on tomorrow. The article will run in the Dallas Morning News a Dallas, TX area paper. The focus of the article is on people that are unconventional cancer patients, I save cancer heroes or better yet cancer warriors that are battling or have battled a cancer you would have never anticipated them having.
Enjoy the article on tomorrow, learn something, question everything, and fight become your own patient advocate for your medical health at ALL of your doctors appointments.
Monday, March 31, 2008
Behind
These are the thoughts I try not to have, but end up having more often than I would like...
A few nights ago, in the bathtub: "Where will I be in less than three weeks from now?" [It's now two weeks and one day until my surgery.]
Last night, at Henry's colleague's house for dinner: "Will they say that it was just two weeks ago that they saw me, and how good I looked, how happy?"
In the car on the way to Costco: "I should make a list for Henry of people who should be at my memorial service, no matter what."
No one wants to read me say all this. But it is the case. Some of the time, I really don't have fear about the surgery. Other times, I have panic attacks, like on the bus last week, and I'd wished I had my Ativan but did not, so I did all I could not to have my nervous breakdown, right there, on the #8, right in Chinatown.
I look at music lyrics and quotes and lines of poetry like scriptures, to describe the fucked-up way all this is sacred. I'm not sure how to make anyone understand that.
A few nights ago, in the bathtub: "Where will I be in less than three weeks from now?" [It's now two weeks and one day until my surgery.]
Last night, at Henry's colleague's house for dinner: "Will they say that it was just two weeks ago that they saw me, and how good I looked, how happy?"
In the car on the way to Costco: "I should make a list for Henry of people who should be at my memorial service, no matter what."
No one wants to read me say all this. But it is the case. Some of the time, I really don't have fear about the surgery. Other times, I have panic attacks, like on the bus last week, and I'd wished I had my Ativan but did not, so I did all I could not to have my nervous breakdown, right there, on the #8, right in Chinatown.
I look at music lyrics and quotes and lines of poetry like scriptures, to describe the fucked-up way all this is sacred. I'm not sure how to make anyone understand that.
Saturday, March 29, 2008
Shine
Can you see it from there? Is it blinding? Yeah, yeah--don't worry. It's only my aura.
Three people this week have told me that I look "brighter," like I'm glowing or something. Henry thinks it just because I have hair and eyebrows, that people notice that I look healthier. But that's a boring way to look at it! It makes me feel good to think that that certain something is my aura, and that my aura is kicking ass.
Three people this week have told me that I look "brighter," like I'm glowing or something. Henry thinks it just because I have hair and eyebrows, that people notice that I look healthier. But that's a boring way to look at it! It makes me feel good to think that that certain something is my aura, and that my aura is kicking ass.
Side Benefits
The pharmaceutical companies do a good job of warning (and terrifying) us about the harmful side effects of chemo drugs. If we spent too much time dwelling on the long list of negatives, we might be tempted to say "f'get about it," but that's not an option for most cancer patients.But the drug companies don't tell us about the harmless side benefits. I recently wrote that new friends (both online and offline) are one of the positive perks of cancer treatment.
I just discovered something even more tangible.
In my BC (before cancer) days, I had a gimp right knee that sometimes collapsed mid-stride. If I walked as little as one mile, I spent the next two days limping like Chester, the Dennis Weaver character on Gunsmoke. (Oops, I'm dating myself.) An orthopedic surgeon and an MRI confirmed in January '07 that I had osteoarthritis. (Now I'm really dating myself.)
But a curious thing happened after I began cancer treatment: My knee healed. (I guess it would be more accurate to say that I became "symptom free," but that doesn't sound as dramatic, does it.) I could take four-mile mountain hikes without limping the next day. I could do deep knee bends and lunges. I could even sit in a lotus position in yoga class, pain-free.
About three months after my stem cell transplant, I started to feel the familiar creaks and twinges of arthritis again. Right about that time, I went in for my dose of maintenance Rituxan, a monoclonal antibody that I think of as my relapse prevention drug. The next day, I had the pain-free, creak-free knees of a thirty-year old. I learned that Rituxan is often used for the treatment of rheumatoid arthritis, but it apparently does wonders for osteoarthritis too.
I can look forward to the side benefit of youthful knees for the next two years, thanks to quarterly infusions of Rituxan. While I'm roaming the planet, I may even climb a mountain or two.
Friday, March 28, 2008
Seventh Anniversary of My Cancer Diagnosis
Today is the seven year anniversary of my cancer diagnosis. I am blessed to still be cancer free after being told initially I was beyond treatment with a very poor prognosis. It's been a long and tough road, but my life is immensely richer than it was before cancer.
So much has happened in the past seven years related to my cancer experience and my being in the cancer community. After about 4-5 years of survival it became very important for me to find purpose in my survival and to give back. Since then these things have happened:
• I created and published my web site Appendix Cancer (Appendiceal Carcinoma) and Peritoneal Surface Malignancy and it has had 50,000 hits. I also published my blog and via my blog and website, I have communicated with over 350 patients newly diagnosed with appendiceal cancer.
• I've been in touch with over a dozen surgical oncologists who specialize in treating those of us with appendix cancer and they have all been gracious enough to support my advocacy efforts.
• My daughter's senior class published a book about 33 people they identified as local heroes. One of the chapters was about my cancer experience and my cancer advocacy efforts. My kids have also used our family's experience as the subject for speeches and papers and projects. My eldest daughter's senior Personal Impact Project was creating over 1000 appendix cancer ribbons that she's distributed to promote appendix cancer awareness. My cancer experience overall has made us closer as a family. We view life differently.
• I was recently honored by a magazine editor who read my blog and asked me to be the subject of one of their magazine's cancer blogger columns. My blog is featured in the spring issue of CR Magazine. You can click this link to read the article: Cancerblog: Cancer at any age is unfair By Alanna Kennedy
• I was invited to attend the annual meeting of the American Association for Cancer Research for 5 days in San Diego this April. There I will participate in the Survivor<->Scientist Program. I'm sure I will meet many inspiring advocates in addition to research scientists involved in the search for cancer cures. I know I will learn much that I will share here when I get back.
• I was asked by someone who read my web site and blog if I would be a contributor to a new on-line medical encyclopedia. I've written an entry about appendix cancer for the encyclopedia.
• I have founded and am in the process of developing a non-profit organization to support those of us diagnosed with advanced abdominal cancers, including appendiceal cancer, who need extensive medical treatment including cytoreduction surgery, peritoneal and/or IV chemotherapy (more about that later).
On a personal level, the time has had many other landmarks including:
• My husband and I celebrated our 20th wedding anniversary
• My kids both completed grade school and junior high school. My eldest will graduate from high school this year and begin college next year. Next year my youngest daughter will graduate from high school. It's what I prayed so hard for, to live to see my kids graduate from high school. If that's all the time I get I'll be grateful and satisfied with the length of my life here.
• I joined a Toastmaster's Club that I love and that has introduced me to several new friends. I've given 7 speeches there. I also volunteered at a soup kitchen for 2years that served hundreds of people and I made several new friends there also.
• I began playing piano professionally
• I've taken up backpacking and have been on 5 backpacking trips, including one on the Appalachian Trail, a place I'd always dreamed of going.
• I finished my first ever bicycle century, the Apple Cider Century; 100 miles in one day. It was something I'd always wanted to do.
• I celebrated 7 more Christmases, Thanksgivings and Easters and all of our family birthdays with my husband and kids. I got 7 more springtimes.
• My youngest daughter and I did a Mother-Daughter weekend in Chicago, complete with a spa day, and my eldest daughter and I were able to see John Williams conduct the Chicago Symphony Orchestra and to see Wicked performed in Chicago.
• I finally made peace with my God and for the first time in my life became the member of a church.
Life has been rich and good. I do still live pretty much one day at a time. I don't take time on this earth for granted, but now I also just see my time here as a small piece of my whole life, so I'm not as heavily invested here. And I invest more in my relationships with my husband and kids. I prioritize my time differently.
It hasn't been an easy 7 years, it's been long and hard. Surviving cancer isn't easy, it's difficult. Life has never again been as easy as it was before cancer. There have been many struggles after the initial physical battle was over...struggles mentally, emotionally and spiritually. But I am better for the battle, I think. I've tried hard to make my short life here count for more.
I truly hope I've made a difference....that I've honored the gift of my survival. That I've honored the gift of being able to see my kids grow up.
So much has happened in the past seven years related to my cancer experience and my being in the cancer community. After about 4-5 years of survival it became very important for me to find purpose in my survival and to give back. Since then these things have happened:
• I created and published my web site Appendix Cancer (Appendiceal Carcinoma) and Peritoneal Surface Malignancy and it has had 50,000 hits. I also published my blog and via my blog and website, I have communicated with over 350 patients newly diagnosed with appendiceal cancer.
• I've been in touch with over a dozen surgical oncologists who specialize in treating those of us with appendix cancer and they have all been gracious enough to support my advocacy efforts.
• My daughter's senior class published a book about 33 people they identified as local heroes. One of the chapters was about my cancer experience and my cancer advocacy efforts. My kids have also used our family's experience as the subject for speeches and papers and projects. My eldest daughter's senior Personal Impact Project was creating over 1000 appendix cancer ribbons that she's distributed to promote appendix cancer awareness. My cancer experience overall has made us closer as a family. We view life differently.
• I was recently honored by a magazine editor who read my blog and asked me to be the subject of one of their magazine's cancer blogger columns. My blog is featured in the spring issue of CR Magazine. You can click this link to read the article: Cancerblog: Cancer at any age is unfair By Alanna Kennedy
• I was invited to attend the annual meeting of the American Association for Cancer Research for 5 days in San Diego this April. There I will participate in the Survivor<->Scientist Program. I'm sure I will meet many inspiring advocates in addition to research scientists involved in the search for cancer cures. I know I will learn much that I will share here when I get back.
• I was asked by someone who read my web site and blog if I would be a contributor to a new on-line medical encyclopedia. I've written an entry about appendix cancer for the encyclopedia.
• I have founded and am in the process of developing a non-profit organization to support those of us diagnosed with advanced abdominal cancers, including appendiceal cancer, who need extensive medical treatment including cytoreduction surgery, peritoneal and/or IV chemotherapy (more about that later).
On a personal level, the time has had many other landmarks including:
• My husband and I celebrated our 20th wedding anniversary
• My kids both completed grade school and junior high school. My eldest will graduate from high school this year and begin college next year. Next year my youngest daughter will graduate from high school. It's what I prayed so hard for, to live to see my kids graduate from high school. If that's all the time I get I'll be grateful and satisfied with the length of my life here.
• I joined a Toastmaster's Club that I love and that has introduced me to several new friends. I've given 7 speeches there. I also volunteered at a soup kitchen for 2years that served hundreds of people and I made several new friends there also.
• I began playing piano professionally
• I've taken up backpacking and have been on 5 backpacking trips, including one on the Appalachian Trail, a place I'd always dreamed of going.
• I finished my first ever bicycle century, the Apple Cider Century; 100 miles in one day. It was something I'd always wanted to do.
• I celebrated 7 more Christmases, Thanksgivings and Easters and all of our family birthdays with my husband and kids. I got 7 more springtimes.
• My youngest daughter and I did a Mother-Daughter weekend in Chicago, complete with a spa day, and my eldest daughter and I were able to see John Williams conduct the Chicago Symphony Orchestra and to see Wicked performed in Chicago.
• I finally made peace with my God and for the first time in my life became the member of a church.
Life has been rich and good. I do still live pretty much one day at a time. I don't take time on this earth for granted, but now I also just see my time here as a small piece of my whole life, so I'm not as heavily invested here. And I invest more in my relationships with my husband and kids. I prioritize my time differently.
It hasn't been an easy 7 years, it's been long and hard. Surviving cancer isn't easy, it's difficult. Life has never again been as easy as it was before cancer. There have been many struggles after the initial physical battle was over...struggles mentally, emotionally and spiritually. But I am better for the battle, I think. I've tried hard to make my short life here count for more.
I truly hope I've made a difference....that I've honored the gift of my survival. That I've honored the gift of being able to see my kids grow up.
silly soothes the soul
I lost count of the number of times we watched this tonight.
My sister, if she hasn't already seen this, would love it.
Update: It turns out that there's a whole bunch of these on YouTube. The kids and I may have watched them all. These guys are awesome. And hilarious. I just wish I could understand the banter.
My sister, if she hasn't already seen this, would love it.
Update: It turns out that there's a whole bunch of these on YouTube. The kids and I may have watched them all. These guys are awesome. And hilarious. I just wish I could understand the banter.
Medical Bargain Finding
I read an interesting article in the Chicago Tribune today, click the link below to read it:
For big surgery, Delhi is dealing: Medical tourism soars as Americans seek major savings on health care in hospitals abroad
This graphic was included in the article:
I remember reading about that before, and being aware that some people travel overseas to obtain comparable quality medical care for a fraction of the US cost. In many cases, paying cash for a procedure overseas is cheaper than just the insurance copay cost for a procedure performed in the US. In the Chicago Tribune article, an uninsured 55 year old man who needed a liver transplant and couldn't afford the $450,000 price tag in the US went to a premier hospital in India and paid $58,000 for the same surgery. The price including his 10 week hospital stay. I would love to know the cost in India for cytoreduction surgery and HIPEC if it is offered there. I wonder if that would be an option for those in the US who are uninsured or whose insurance denies payment for the procedure.
I had a similar experience with medical cost variations within the US. I had two portacaths. I had one removed as an office procedure in another state at a cost of $350. I had the second removed locally, but my area did not offer the surgery as an office procedure. The cost for the removal of the second port locally in an outpatient hospital surgical suite was $3500. I had local anesthesia and was awake and watched both procedures. They both were similar procedures and took the same amount of time. I remember thinking my insurance company would have come out ahead had they'd paid airfare, food, and hotel cost for me to have the second port removed as an office procedure out of state.
Apparently insurance companies are starting to pay attention to details like that and some are offering first class transportation and lodging for those willing to have procedures performed in other parts of or outside of the US.
There are other ways to save on medical costs. I tried to watch dates to stay within annual deductible dates and annual out-of-pocket expense limits. I also kept track of procedures, dates and insurance payments. I saved over $10,000 in billing errors I discovered in addition to double billings, insurance failure to pay for covered procedures and charges that I challenged the insurance company about until they agreed to pay. It took me many hours of phone calls and being on hold, but at $10,000 savings, it was well worth my time.
A cancer diagnosis and treatment is stressful enough, but the costs of medical care can cause additional stress when combined with a loss of income for those who are sometimes unable to work for several months.
It really pays to be a careful consumer in the medical world.
For big surgery, Delhi is dealing: Medical tourism soars as Americans seek major savings on health care in hospitals abroad
This graphic was included in the article:
I remember reading about that before, and being aware that some people travel overseas to obtain comparable quality medical care for a fraction of the US cost. In many cases, paying cash for a procedure overseas is cheaper than just the insurance copay cost for a procedure performed in the US. In the Chicago Tribune article, an uninsured 55 year old man who needed a liver transplant and couldn't afford the $450,000 price tag in the US went to a premier hospital in India and paid $58,000 for the same surgery. The price including his 10 week hospital stay. I would love to know the cost in India for cytoreduction surgery and HIPEC if it is offered there. I wonder if that would be an option for those in the US who are uninsured or whose insurance denies payment for the procedure.
I had a similar experience with medical cost variations within the US. I had two portacaths. I had one removed as an office procedure in another state at a cost of $350. I had the second removed locally, but my area did not offer the surgery as an office procedure. The cost for the removal of the second port locally in an outpatient hospital surgical suite was $3500. I had local anesthesia and was awake and watched both procedures. They both were similar procedures and took the same amount of time. I remember thinking my insurance company would have come out ahead had they'd paid airfare, food, and hotel cost for me to have the second port removed as an office procedure out of state.
Apparently insurance companies are starting to pay attention to details like that and some are offering first class transportation and lodging for those willing to have procedures performed in other parts of or outside of the US.
There are other ways to save on medical costs. I tried to watch dates to stay within annual deductible dates and annual out-of-pocket expense limits. I also kept track of procedures, dates and insurance payments. I saved over $10,000 in billing errors I discovered in addition to double billings, insurance failure to pay for covered procedures and charges that I challenged the insurance company about until they agreed to pay. It took me many hours of phone calls and being on hold, but at $10,000 savings, it was well worth my time.
A cancer diagnosis and treatment is stressful enough, but the costs of medical care can cause additional stress when combined with a loss of income for those who are sometimes unable to work for several months.
It really pays to be a careful consumer in the medical world.
Easter basket cupcakes
I know Easter is long over, but today was our MOMS Club "Spring Fling" and egg hunt, so I made these cupcakes:
There are three left if anyone wants them.
I made my monthly visit to the Cancer Center today. The nurse handed me my CBC results, and I was SO EXCITED! My hemoglobin was 13.8! It's never been that high in my ENTIRE LIFE! "How did I do that?" I asked the nurse. She was surprised, too. "Did you just eat a bunch of liver or something?" she asked. I hadn't, and I didn't know why the numbers were so high, but we were celebrating. We even speculated that Dr. GPO would let me stop taking the iron pills because I was doing so well.
Then I took a closer look at the form and noticed that the nurse had given me someone else's report. Oh.
Dr. GPO showed up with the real report, which wasn't nearly as good. My white blood cells have taken a nose-dive to 1.9 (they should be at least 4.0) and my hemoglobin is only 10.9. Numbers like these are a common side effect of the Revlimid, so he wants me to try taking a two-week break instead of the usual one-week break to let my blood counts recover. We're not telling the pharmacy, though, because it would probably confuse them too much. They're very easily confused.
There are three left if anyone wants them.
I made my monthly visit to the Cancer Center today. The nurse handed me my CBC results, and I was SO EXCITED! My hemoglobin was 13.8! It's never been that high in my ENTIRE LIFE! "How did I do that?" I asked the nurse. She was surprised, too. "Did you just eat a bunch of liver or something?" she asked. I hadn't, and I didn't know why the numbers were so high, but we were celebrating. We even speculated that Dr. GPO would let me stop taking the iron pills because I was doing so well.
Then I took a closer look at the form and noticed that the nurse had given me someone else's report. Oh.
Dr. GPO showed up with the real report, which wasn't nearly as good. My white blood cells have taken a nose-dive to 1.9 (they should be at least 4.0) and my hemoglobin is only 10.9. Numbers like these are a common side effect of the Revlimid, so he wants me to try taking a two-week break instead of the usual one-week break to let my blood counts recover. We're not telling the pharmacy, though, because it would probably confuse them too much. They're very easily confused.
Thursday, March 27, 2008
Try to get this out of your head
My friend Abigail thought she could outdo me by posting a video of her embarrassing '90s crush, Chesney Hawkes. (He's from England, but I knew who he was! If there was a cute boy with floppy hair anywhere in the world in the early '90s, I knew who he was). Anyway, I have one that's even MORE EMBARRASSING. Does anyone remember Tommy Page? If I couldn't marry Donnie from NKOTB, I was going to marry Tommy Page. I had a life-sized poster of him in my room.
This is not his best-known song, but it is by far the most embarrasing (and hilarious) video I could find. Try not to laugh out loud. And try not to dance.
I think I'm going to regret admitting these things if I ever, I don't know, run for congress or something.
too young too soon
I am grieving the death of an old friend today.
Ron Crawley, many people will miss you very, very much.
Instead of a regular post, I am linking to a post from BlogHer by Catherine Morgan. It's about the environmental causes of breast cancer but the information applies to other cancers as well.
Ron Crawley, many people will miss you very, very much.
Instead of a regular post, I am linking to a post from BlogHer by Catherine Morgan. It's about the environmental causes of breast cancer but the information applies to other cancers as well.
Wednesday, March 26, 2008
Support Group Irony
I would not join a cancer support group after I was diagnosed. I was tough, I was strong. I didn't need to be in a support group with other cancer patients. Support groups seemed to me to imply weakness, they were for people who couldn't handle it. I could handle it. I didn't need help.
But deep down, there were other reasons I didn't want to join a support group or spend a lot of time in the company of others diagnosed with cancer. I was afraid I might watch someone in my support group have a recurrence and die of cancer. That I might have to support them as they succumbed to the enemy that I was fighting. Would I be able to do that? I was afraid that someone just like myself who thought they would "beat it" would lose their battle. I knew that would make me feel vulnerable, that it might destroy my resolve and certainty that I could beat my own disease. I was better off in the healthy, cancer-free world. It was safer.
I went through a very great struggle in my survival after awhile, though, after treatment. I was stuck. I was healthy, but still a "cancer patient". I was still tested often, I still saw oncologists frequently. I never new if each test would hallmark my return to the world of active cancer. I wasn't really well and normal again even though evidence had so far declared me cancer-free. I was instead in a continuous watchful waiting mode. I was just kind of on parole from cancer. No one would call me cured. So it wasn't really over. I was struggling. And no one on the "outside" could understand how I felt, I'd finished the hard part, surgery and chemo, and had good test results. Why should I be struggling in light of such a positive outcome?
Then I found the book "Dancing in Limbo: Making Sense of Life After Cancer". I was so very relieved, someone understood how I felt and even put words to my feelings. But that's because the authors were cancer survivors, so of course they could relate to how I felt.
After that I joined for a short time a "Wellness" support group for those who were struggling emotionally after treatment. Some in my group had recurrences and died. We had candles present at meetings to represent the spirits of those who had gone before us. And it was okay, the group gave me a sense of peace that had evaded me until then. It made me strong enough to reread all of the medical research about my cancer so that I could construct my web site. It helped me find the courage to become a hospice volunteer for 6 months so I could also learn how to support those who wouldn't survive our disease.
Now, since publishing my web site, I communicate with cancer patients every day. Cancer is a large and very real part of my daily life by choice.
Almost by default via my web site, I am now part of a large group of cancer patients who support each other....you could actually call it a cancer support group. The irony is that in the end I love being part of the community of those diagnosed with cancer. I love the support we can provide and accept from each other. I love the easy and natural way we communicate with each other. I love the sense I have of feeling at home with other survivors.
I got to thinking, I also love being a member of my Toastmaster's Club, we call ourselves the Executive Diction Club...it is a group that supports my objective to become better at public speaking. When I think of it, that's also a kind of support group, its just called a club. I'd probably not have wanted to join if they were labeled as a support group for those who find it challenging to speak in public.
I wonder if we should just find another name for "cancer support group". A name that sounds sheik and nifty and cool and that makes us instead sound like an elite club. Something we'll all feel privileged to be a part of considering our exclusive and strict requirements for joining. Only those tough enough to walk the cancer walk can be allowed as members. Not just anyone can join. Only the few, the proud, the cancer-afflicted can participate. We might actually have a lot of very profound fun (those in the cancer community can have a GREAT sense of humor), share meaningful insights, maybe in the end even be instrumental in curing cancer....who knows what great potential our club could have. We might change the world.
Any suggestions for a name for our club, anyone want to join? Only those with a cancer diagnosis allowed.
But deep down, there were other reasons I didn't want to join a support group or spend a lot of time in the company of others diagnosed with cancer. I was afraid I might watch someone in my support group have a recurrence and die of cancer. That I might have to support them as they succumbed to the enemy that I was fighting. Would I be able to do that? I was afraid that someone just like myself who thought they would "beat it" would lose their battle. I knew that would make me feel vulnerable, that it might destroy my resolve and certainty that I could beat my own disease. I was better off in the healthy, cancer-free world. It was safer.
I went through a very great struggle in my survival after awhile, though, after treatment. I was stuck. I was healthy, but still a "cancer patient". I was still tested often, I still saw oncologists frequently. I never new if each test would hallmark my return to the world of active cancer. I wasn't really well and normal again even though evidence had so far declared me cancer-free. I was instead in a continuous watchful waiting mode. I was just kind of on parole from cancer. No one would call me cured. So it wasn't really over. I was struggling. And no one on the "outside" could understand how I felt, I'd finished the hard part, surgery and chemo, and had good test results. Why should I be struggling in light of such a positive outcome?
Then I found the book "Dancing in Limbo: Making Sense of Life After Cancer". I was so very relieved, someone understood how I felt and even put words to my feelings. But that's because the authors were cancer survivors, so of course they could relate to how I felt.
After that I joined for a short time a "Wellness" support group for those who were struggling emotionally after treatment. Some in my group had recurrences and died. We had candles present at meetings to represent the spirits of those who had gone before us. And it was okay, the group gave me a sense of peace that had evaded me until then. It made me strong enough to reread all of the medical research about my cancer so that I could construct my web site. It helped me find the courage to become a hospice volunteer for 6 months so I could also learn how to support those who wouldn't survive our disease.
Now, since publishing my web site, I communicate with cancer patients every day. Cancer is a large and very real part of my daily life by choice.
Almost by default via my web site, I am now part of a large group of cancer patients who support each other....you could actually call it a cancer support group. The irony is that in the end I love being part of the community of those diagnosed with cancer. I love the support we can provide and accept from each other. I love the easy and natural way we communicate with each other. I love the sense I have of feeling at home with other survivors.
I got to thinking, I also love being a member of my Toastmaster's Club, we call ourselves the Executive Diction Club...it is a group that supports my objective to become better at public speaking. When I think of it, that's also a kind of support group, its just called a club. I'd probably not have wanted to join if they were labeled as a support group for those who find it challenging to speak in public.
I wonder if we should just find another name for "cancer support group". A name that sounds sheik and nifty and cool and that makes us instead sound like an elite club. Something we'll all feel privileged to be a part of considering our exclusive and strict requirements for joining. Only those tough enough to walk the cancer walk can be allowed as members. Not just anyone can join. Only the few, the proud, the cancer-afflicted can participate. We might actually have a lot of very profound fun (those in the cancer community can have a GREAT sense of humor), share meaningful insights, maybe in the end even be instrumental in curing cancer....who knows what great potential our club could have. We might change the world.
Any suggestions for a name for our club, anyone want to join? Only those with a cancer diagnosis allowed.
“Janet Sims’ Transplant Fund”
Have A Heart CampaignMrs. Sims, a 40 year old mother of 3, has a disease called Sarcoidosis, she had a successful double lung an heart transplant in February of 2007. Two months shy of her annual post transplant operation, her lungs went into chronic rejection and she had to be relisted for another transplant. The second operation was a success also. Now Mrs. Sims begins her road to recovery, thanking God for another chance at life. It is our hope and desire that you would assist us in with your donations to this worthy cause and to this valiant woman of God who has committed her life to God.
What is Sarcoidosis?
Sarcoidosis involves inflammation that produces tiny lumps of cells called granulomas in various organs of the body. These granulomas can grow and clump together in an organ and affect how the organ functions. It usually affects the lungs, lymph nodes in the chest cavity, skin, eyes and liver.
Janet is currently hospitalized at Stanford University Medical Center recovering from her second transplant. She will be required to live in the Stanford/San Jose California area for extensive outpatient medical care after the transplant for a minimum of three to four months.
Her husband Mr. Sims will be her caregiver for her aftercare and will have to undergo training to learn how to assist Mrs. Sims. This will require him to temporarily relocate to the Stanford area to care for his wife and take on the expense of maintaining to places of residences, Nevada and California The cost of transportation for her, her husband and her family, housing, expensive medications, food and other necessities is estimated to reach at least $30,000.
Rest assured that 100% of your donation will be used exclusively for Mrs. Sims’ care during this catastrophic illness. Our prayer is that your generosity will be restored to you 100 times and that God’s will richly bless you with all that you have need of. Please keep The Sims family in your prayers as they trust God through this difficult time.
Thank you in advance for your loving kindness. God Bless You,
Seglinda Chaney, Fund Trustee and Friend of Mrs. Janet SimsMake a donation
Account # 2296701622
Routing # 321270742
Make checks payable to: Janet Sims Transplant Fund.
By Mail: Janet Sims
6223 E. Sahara Ave. Sp.155
News Article (Cigarette Company Paid for Lung Cancer Study)
A link to the story can be found below: the title is Cigarette Company Paid for Lung Cancer Study
http://www.nytimes.com/2008/03/26/health/research/26lung.html
http://www.nytimes.com/2008/03/26/health/research/26lung.html
Tranny Mess or Fierce?
At last, I'm able to toss around a few pop-culture catch phrases from cable television. "Tranny mess" (i.e. over-the-top bad) and "fierce" (i.e. good) were the fave catch phrases of Christian Siriano, the young designer who was the Season 4 Project Runway winner.
And how do I know this? When George and I were in Seattle in March, I was plagued with the common cold. My low grade fever (100.1 F) wasn't high enough to sound the doctor alarms (100.5 F), but high enough to turn me into a first-class bed potato. While I nursed my cold, I devoured an entire season of Project Runway. The creativity and cattiness of the contestants and the sassy attitude of the ultra-thin models strutting their designer stuff made me forget my runny nose, stuffy head and achy bones for a few hours. I was hooked.
I was lucky enough to tune in during the season finale. But New York's Fashion Week wasn't the only thing that caught my eye. I was wowed by the ad for Market Optical, an eyewear boutique in Seattle.
The next day, I was feeling much perkier, so George and I wandered around Pike's Place Market. When we happened to pass Market Optical, I squealed, "OMG, I HAVE to go in there. They advertised on Project Runway." The boutique probably has no more than 30 sets of frames, and each one is fabulous, or "fierce" as Christian would say.
I tried on a few frames and then, without warning, pulled off my wig so that I could see how my specs would look on a hairless face. The opticians didn't see that one coming. But the "now you see it, now you don't" demonstration helped us narrow down the selection to the perfect pair.
So what do you think? Am I a tranny mess, a hot mess. . . or fierce?
And how do I know this? When George and I were in Seattle in March, I was plagued with the common cold. My low grade fever (100.1 F) wasn't high enough to sound the doctor alarms (100.5 F), but high enough to turn me into a first-class bed potato. While I nursed my cold, I devoured an entire season of Project Runway. The creativity and cattiness of the contestants and the sassy attitude of the ultra-thin models strutting their designer stuff made me forget my runny nose, stuffy head and achy bones for a few hours. I was hooked.
I was lucky enough to tune in during the season finale. But New York's Fashion Week wasn't the only thing that caught my eye. I was wowed by the ad for Market Optical, an eyewear boutique in Seattle.
The next day, I was feeling much perkier, so George and I wandered around Pike's Place Market. When we happened to pass Market Optical, I squealed, "OMG, I HAVE to go in there. They advertised on Project Runway." The boutique probably has no more than 30 sets of frames, and each one is fabulous, or "fierce" as Christian would say.
I tried on a few frames and then, without warning, pulled off my wig so that I could see how my specs would look on a hairless face. The opticians didn't see that one coming. But the "now you see it, now you don't" demonstration helped us narrow down the selection to the perfect pair.
So what do you think? Am I a tranny mess, a hot mess. . . or fierce?
Here I am in the Mac Photo Booth with my new glasses and no wig.
My new hair, by the way, is growing fast.
My new hair, by the way, is growing fast.
Here I am with the new glasses and wig.
The glasses are lined in a "thistle" color that looks like it jumped right out of a 68-count box of Crayola crayons.
Can you tell that I LOVE this Photo Booth feature on the Mac?
The glasses are lined in a "thistle" color that looks like it jumped right out of a 68-count box of Crayola crayons.
Can you tell that I LOVE this Photo Booth feature on the Mac?
all at once
I was planning a post about cancer clusters today but I have decided to put that off until tomorrow.
Instead I will link you once again to Sara, who has left me furious, sad, scared, hopeful. inspired and even amused by a single post.
Cancer is a bitch.
Instead I will link you once again to Sara, who has left me furious, sad, scared, hopeful. inspired and even amused by a single post.
Cancer is a bitch.
The Graduate
I've written before about the Parents as Teachers program. This is a free program offered by our school district for kids from birth through age three. An early-childhood educator would come to our house four times a year to perform screenings, tell us what skills WCK should have at various ages, give us ideas for activities to do with her, and basically reassure us that WCK was TOTALLY NORMAL and, in fact, brilliant. They'd also have some group activities a few times a year. Because WCK turns three this spring, today was our last Parents as Teachers visit. WCK had to go through a long series of tests and passed nearly all of them with flying colors.
Her one "failure"? She had to answer a bunch of questions, such as "What do you do when you're tired?" ("I go lie down," said WCK. The Parents as Teachers Lady was very impressed with her correct grammar.) One of the questions was "What do you do with a chair?" (Correct answer: "Sit.") WCK thought for a while and said, "Use it to reach the computer!" While this was 100 percent factual, it was not the "correct" answer, so the teacher tried again. "Blow bubbles," said WCK. This, of course, made no sense to the PAT Lady. I explained that I'd put the bubble soap up in a high cupboard where I thought WCK would never reach it. She's recently figured out how to push the chair over to the cupboard, climb up on the chair, and reach the bubbles.
Again, this was a 100 percent true answer, but it was not "sit", so WCK failed the chair question. No points for creativity in the Parents as Teachers program.
Despite the chair failure, WCK was allowed to graduate from the program, and she got a nice certificate and a new book for her efforts. I'm very proud. I'm sure it's hard for a three-year-old to get a well-paying job without a Parents as Teachers degree. It was a little sad to say goodbye to our teacher. She was the one who reassured me that it was totally OK for Jay to let WCK watch football on TV when she was four months old. I was convinced it was going to give her brain damage.
Ticklebee update: My child is not as heartless as I thought. Yesterday, she found Ticklebee (the wounded balloon dog), and instead of shunning him, she announced, "Ticklebee is very sick!" She then ran to get her doctor kit and gave him a full workup and a plastic Band-Aid. He's still hanging in there, despite the fact that he still has no back legs.
Black jellybean update: My friend Hannah gave me another bag of black jellybeans this morning! Woo hoo! My supply will never run low.
Class reunion questionnaire update: Still have not filled it out completely, although I did circle the "N" on the plastic surgery question.
Her one "failure"? She had to answer a bunch of questions, such as "What do you do when you're tired?" ("I go lie down," said WCK. The Parents as Teachers Lady was very impressed with her correct grammar.) One of the questions was "What do you do with a chair?" (Correct answer: "Sit.") WCK thought for a while and said, "Use it to reach the computer!" While this was 100 percent factual, it was not the "correct" answer, so the teacher tried again. "Blow bubbles," said WCK. This, of course, made no sense to the PAT Lady. I explained that I'd put the bubble soap up in a high cupboard where I thought WCK would never reach it. She's recently figured out how to push the chair over to the cupboard, climb up on the chair, and reach the bubbles.
Again, this was a 100 percent true answer, but it was not "sit", so WCK failed the chair question. No points for creativity in the Parents as Teachers program.
Despite the chair failure, WCK was allowed to graduate from the program, and she got a nice certificate and a new book for her efforts. I'm very proud. I'm sure it's hard for a three-year-old to get a well-paying job without a Parents as Teachers degree. It was a little sad to say goodbye to our teacher. She was the one who reassured me that it was totally OK for Jay to let WCK watch football on TV when she was four months old. I was convinced it was going to give her brain damage.
Ticklebee update: My child is not as heartless as I thought. Yesterday, she found Ticklebee (the wounded balloon dog), and instead of shunning him, she announced, "Ticklebee is very sick!" She then ran to get her doctor kit and gave him a full workup and a plastic Band-Aid. He's still hanging in there, despite the fact that he still has no back legs.
Black jellybean update: My friend Hannah gave me another bag of black jellybeans this morning! Woo hoo! My supply will never run low.
Class reunion questionnaire update: Still have not filled it out completely, although I did circle the "N" on the plastic surgery question.
Tran-Tram
I'm pretty shitty at taking pictures. I mean, I'm not a shitty photographer, but I'm shitty at remembering to take pictures. This problem has been compounded by the fact that I dropped my camera and busted the LCD screen. So I'm limited to taking pictures the old-fashioned way--using the viewfinder. The horror!
Sadly, I took one picture during the entire time we were in LA, and it is of my girlfriend Irene and her man Peter:
[How cute! And how Irene!]
But I try to see the busted camera as a challenge. The point-and-shoot method with the arm sticking way out in front of me is a game of "how many shots can I take that will turn out decent?" And then the fun of it is that I have no immediate judgement--I have to wait until I download the pics onto my computer before I see how they turn out. So here's me trying to capture my new hair:
I've been told how hip, artsy, cute, and pixie I look. My hair also attracts attention, which in turn makes people pay more attention to my various accoutrements, such as my tattoos and my glasses. It's pretty cool and boosts my self-esteem, which is something that I've been in serious lack of in recent months. Alas, there are still moments when I'm called "Sir" or "Senor," but whatever. There's a certain sexiness to being androgynous.
As the day for the surgery draws near, Henry and I have random discussions about it, which signify to me that even though we're trying not to freak out about it, we think about it all the time. A couple nights ago, we wondered if in fact I could get have a normal pregnancy again, should we choose to have a third child. Right now, we're not even sure if my reproductive system will heal from the chemo, as I haven't even had a period since I started chemo. We were told that early menopause could be a side effect. In any case, should I be able to have children again someday, would I be able to carry a child, given that my abdominal muscles will no longer be there, and in their place, I will have a wire mesh to hold in my innards? So we looked this up online, and indeed, few women have ever carried their babies to term after having this surgery, and fewer still had the exact surgery I'm having. Most women are beyond childbearing age when they have the TRAM-flap surgery done, and those who have had it done and had children only had one breast removed and reconstructed. I found exactly ONE woman online who had a bilateral mastectomy and TRAM-flap reconstruction who got pregnant, but I don't know how it ended up for her, as she didn't make any more posts on the forum that she posted on. It's a question that my plastic surgeon didn't bring up, probably because she's not accustomed to discussing such issues with her patients.
In any case, we are moving along as planned. And we will deal with these issues in the future, if we must. The problem with our lives right now is that there is so much that is uncertain--big ticket items--but there's nothing we can do about that uncertainty. We can only move forward the best way we know how.
ps--For more updates on the Worrall Yu household, check out my other blog.
Sadly, I took one picture during the entire time we were in LA, and it is of my girlfriend Irene and her man Peter:
[How cute! And how Irene!]
But I try to see the busted camera as a challenge. The point-and-shoot method with the arm sticking way out in front of me is a game of "how many shots can I take that will turn out decent?" And then the fun of it is that I have no immediate judgement--I have to wait until I download the pics onto my computer before I see how they turn out. So here's me trying to capture my new hair:
I've been told how hip, artsy, cute, and pixie I look. My hair also attracts attention, which in turn makes people pay more attention to my various accoutrements, such as my tattoos and my glasses. It's pretty cool and boosts my self-esteem, which is something that I've been in serious lack of in recent months. Alas, there are still moments when I'm called "Sir" or "Senor," but whatever. There's a certain sexiness to being androgynous.
As the day for the surgery draws near, Henry and I have random discussions about it, which signify to me that even though we're trying not to freak out about it, we think about it all the time. A couple nights ago, we wondered if in fact I could get have a normal pregnancy again, should we choose to have a third child. Right now, we're not even sure if my reproductive system will heal from the chemo, as I haven't even had a period since I started chemo. We were told that early menopause could be a side effect. In any case, should I be able to have children again someday, would I be able to carry a child, given that my abdominal muscles will no longer be there, and in their place, I will have a wire mesh to hold in my innards? So we looked this up online, and indeed, few women have ever carried their babies to term after having this surgery, and fewer still had the exact surgery I'm having. Most women are beyond childbearing age when they have the TRAM-flap surgery done, and those who have had it done and had children only had one breast removed and reconstructed. I found exactly ONE woman online who had a bilateral mastectomy and TRAM-flap reconstruction who got pregnant, but I don't know how it ended up for her, as she didn't make any more posts on the forum that she posted on. It's a question that my plastic surgeon didn't bring up, probably because she's not accustomed to discussing such issues with her patients.
In any case, we are moving along as planned. And we will deal with these issues in the future, if we must. The problem with our lives right now is that there is so much that is uncertain--big ticket items--but there's nothing we can do about that uncertainty. We can only move forward the best way we know how.
ps--For more updates on the Worrall Yu household, check out my other blog.
Tuesday, March 25, 2008
Hangin' Tough
My 15-year high school reunion is coming up this summer, and the reunion committee sent us a bunch of forms to fill out. I know the committee means well, and I have to hand it to them for being so organized this time (our last reunion was in a bar ... where an actual fistfight broke out). But. We're supposed to fill out an RSVP form with some basic info, write a 500-word biography about ourselves, and then answer four pages (FOUR PAGES) of questions. Examples of actual questions I am supposed to answer:
Was there ever a time you had to confront the possibility of death?
Cosmetic surgery: Ever considered it? Y/N
I'm wondering if I'm allowed to be sarcastic on this form. For example, I'm wondering if I can answer "Do you have an interesting/dangerous/dirty job? Please summarize." with "Yes. My child once called me to her room because she had somehow managed to get poop all over her hand."
Then for "Do you have a funny story about work?" I could answer "See above."
Anyway, this form has been sitting on the desk in our kitchen for at least a month or so. The time I could have spent actually filling it out has been spent e-mailing the few people I'm actually in touch with from high school to complain about how much I don't want to fill out this form. And now I'm blogging about it instead of filling it out.
This afternoon I decided, once and for all, that I was going to fill out this form. I got about a third of the way through page one (which consisted of tough questions like, "Name", "Address" and "Number of guests attending"), when I got to the part about which songs from high school I'd like played at the reunion. I got to reminiscing, suddenly everything turned blurry, and when the smoke cleared, I realized I'd spent most of WCK's naptime watching New Kids on the Block videos on YouTube.
That's right. And now it's Big Confession Time: A couple of months ago, there was a delightful rumor going around that the New Kids were going to be reuniting. I was secretly REALLY, REALLY, REALLY excited. Actually, it wasn't all that secret, because I told Jay that if the New Kids came to Kansas City, I WAS GOING, NO MATTER WHAT. For about 17 years I've had to pretend that I'd finally decided that the New Kids were really lame, and you know what? It's all been a lie!! I still love them. Donnie's ripped jeans? His Carol Brady hairdo? The way they all chased each other through a cemetery and then jumped into the convertible in the "Right Stuff" video? Awesome. Those videos are still as awesome as they were when I saw the New Kids in concert in 1990. I never got to marry Donnie Wahlberg, but, you know ... maybe we can work something out.
You can't make fun of me. I have cancer.
Was there ever a time you had to confront the possibility of death?
Cosmetic surgery: Ever considered it? Y/N
I'm wondering if I'm allowed to be sarcastic on this form. For example, I'm wondering if I can answer "Do you have an interesting/dangerous/dirty job? Please summarize." with "Yes. My child once called me to her room because she had somehow managed to get poop all over her hand."
Then for "Do you have a funny story about work?" I could answer "See above."
Anyway, this form has been sitting on the desk in our kitchen for at least a month or so. The time I could have spent actually filling it out has been spent e-mailing the few people I'm actually in touch with from high school to complain about how much I don't want to fill out this form. And now I'm blogging about it instead of filling it out.
This afternoon I decided, once and for all, that I was going to fill out this form. I got about a third of the way through page one (which consisted of tough questions like, "Name", "Address" and "Number of guests attending"), when I got to the part about which songs from high school I'd like played at the reunion. I got to reminiscing, suddenly everything turned blurry, and when the smoke cleared, I realized I'd spent most of WCK's naptime watching New Kids on the Block videos on YouTube.
That's right. And now it's Big Confession Time: A couple of months ago, there was a delightful rumor going around that the New Kids were going to be reuniting. I was secretly REALLY, REALLY, REALLY excited. Actually, it wasn't all that secret, because I told Jay that if the New Kids came to Kansas City, I WAS GOING, NO MATTER WHAT. For about 17 years I've had to pretend that I'd finally decided that the New Kids were really lame, and you know what? It's all been a lie!! I still love them. Donnie's ripped jeans? His Carol Brady hairdo? The way they all chased each other through a cemetery and then jumped into the convertible in the "Right Stuff" video? Awesome. Those videos are still as awesome as they were when I saw the New Kids in concert in 1990. I never got to marry Donnie Wahlberg, but, you know ... maybe we can work something out.
You can't make fun of me. I have cancer.
before i die
As part of an exercise I did last January, I wrote a list of things that I would like to do before I die.
Don't worry, I'm not being morbid nor have a received any bad news of late. It's an exercise that anybody could do, although it does feel more loaded now than it would have before I was diagnosed with cancer.
I re-read my list today and was surprised by it, even though I only wrote it two months ago.
The list contains things I feel I ought to do and things I fantasize about doing, things that are achievable (and that I will do) and things that probably fall under the category of pipe dream.
This is what I wrote, through stream of consciousness and completely uncensored:
Finish my queen-sized bed spread.
Write a novel.
Organize my house.
Travel with my kids.
Go back to school.
Run a marathon.
Participate in flyball or agility with a dog and my older son.
Get the message out re living long and well with metastatic cancer.
See the midnight sun again.
Go to Australia.
Become a soup-making expert.
Get more writing published.
What would be on your list?
Don't worry, I'm not being morbid nor have a received any bad news of late. It's an exercise that anybody could do, although it does feel more loaded now than it would have before I was diagnosed with cancer.
I re-read my list today and was surprised by it, even though I only wrote it two months ago.
The list contains things I feel I ought to do and things I fantasize about doing, things that are achievable (and that I will do) and things that probably fall under the category of pipe dream.
This is what I wrote, through stream of consciousness and completely uncensored:
Finish my queen-sized bed spread.
Write a novel.
Organize my house.
Travel with my kids.
Go back to school.
Run a marathon.
Participate in flyball or agility with a dog and my older son.
Get the message out re living long and well with metastatic cancer.
See the midnight sun again.
Go to Australia.
Become a soup-making expert.
Get more writing published.
What would be on your list?
Monday, March 24, 2008
Riches
In part maybe because I'm middle aged, and in part maybe because I'm a cancer survivor, I've been recently counting my blessings. I get nostalgic sometimes. When I count my blessings, the richest blessings in my life have all been people.
My husband has loved me unconditionally for the past 23 years. He has loved me more than I think anyone else in my life ever has, he is my life's greatest blessing. I am also blessed to have very close relationships with both of my amazing daughters. They are people I love spending time with and that I would admire and love even if they weren't my children. They teach me a lot.
I have a wonderfully strong and inspiring mother. I also have three amazing sisters who are also inspirational to me. They all supported me so much even from a distance when I was diagnosed and going through cancer treatment.
And of course all of my husband's family, who have also been true family to me for decades and who were such a great support to me, especially through my cancer experience.
I left home at a young age and haven't lived near my family of origin since age 17, but when I think of it, I have always been surrounded by "family".
Richard and Dorothy were like adopted parents to me from the time I left home. They were a middle-aged couple I met when they came into a restaurant where I waitressed at age 17. She said I looked just like her daughter, who lived about 4 hours away from them. When I mentioned my parents lived equally far from me, we decided to adopt each other. We became family and played penny anny poker every Friday night, canned tomatoes together, we talked, we ate dinner together often and we spent holidays together. Their home was my second home. Though they are no longer living, they gave me many good memories of times we shared.
My father-in-law at that time and I also became very close. We fished together, worked on finishing wood together, had coffee together and talked every week. I loved him a lot. He also passed many years ago.
I had a very elderly neighbor I adopted and helped when I was 18, Anna. She taught me so much about character and what it was like to live on a limited income as a blind amputee. I have since respected the aged because of her and have adopted elderly neighbors as family ever since. I try to be the family they need as I hope my mother's neighbors are also family to her. Anna taught me that life is a circle, we all need to be each other's family especially in this day and age when many don't live near biological family.
And there's Art, my other "adopted" dad. I met him when I worked at a soup kitchen. He is a man in his 80s who is active and giving and independent. He comes by my house often for coffee, we listen to each other, we support each other, he helps me if I have a problem. He is a grandfather to my kids and never forgets theirs or my birthday. He listens to me. He gives me a hug every time I see him.
I have a best friend of 28 years who has been there and shared every important event in my life for almost 3 decades. We knew each other when we dated our prospective husbands for the first time, we stood up in each other's weddings, we raised our kids together, and are becoming empty nesters together. We've shared together college experiences, work and personal struggles and faith journeys almost our entire adult lives.
And I feel the same sense of family now with the many I communicate with who are diagnosed with cancer. We are all related, not by blood, but by disease. We share a lot. The same fears, the same anger, the same physical, emotional and financial struggles, the same sense of hope and the same sense of loss. We can say "you know how I feel" and we always do. I am inspired by so many I've met with this diagnosis. I have learned so much from them as I continue my own journey. I have been blessed to be part of the cancer community.
So, I was thinking of how rich my life has been. Rich in the best way. Rich in relationships. Rich in people.
There is no greater wealth.
My husband has loved me unconditionally for the past 23 years. He has loved me more than I think anyone else in my life ever has, he is my life's greatest blessing. I am also blessed to have very close relationships with both of my amazing daughters. They are people I love spending time with and that I would admire and love even if they weren't my children. They teach me a lot.
I have a wonderfully strong and inspiring mother. I also have three amazing sisters who are also inspirational to me. They all supported me so much even from a distance when I was diagnosed and going through cancer treatment.
And of course all of my husband's family, who have also been true family to me for decades and who were such a great support to me, especially through my cancer experience.
I left home at a young age and haven't lived near my family of origin since age 17, but when I think of it, I have always been surrounded by "family".
Richard and Dorothy were like adopted parents to me from the time I left home. They were a middle-aged couple I met when they came into a restaurant where I waitressed at age 17. She said I looked just like her daughter, who lived about 4 hours away from them. When I mentioned my parents lived equally far from me, we decided to adopt each other. We became family and played penny anny poker every Friday night, canned tomatoes together, we talked, we ate dinner together often and we spent holidays together. Their home was my second home. Though they are no longer living, they gave me many good memories of times we shared.
My father-in-law at that time and I also became very close. We fished together, worked on finishing wood together, had coffee together and talked every week. I loved him a lot. He also passed many years ago.
I had a very elderly neighbor I adopted and helped when I was 18, Anna. She taught me so much about character and what it was like to live on a limited income as a blind amputee. I have since respected the aged because of her and have adopted elderly neighbors as family ever since. I try to be the family they need as I hope my mother's neighbors are also family to her. Anna taught me that life is a circle, we all need to be each other's family especially in this day and age when many don't live near biological family.
And there's Art, my other "adopted" dad. I met him when I worked at a soup kitchen. He is a man in his 80s who is active and giving and independent. He comes by my house often for coffee, we listen to each other, we support each other, he helps me if I have a problem. He is a grandfather to my kids and never forgets theirs or my birthday. He listens to me. He gives me a hug every time I see him.
I have a best friend of 28 years who has been there and shared every important event in my life for almost 3 decades. We knew each other when we dated our prospective husbands for the first time, we stood up in each other's weddings, we raised our kids together, and are becoming empty nesters together. We've shared together college experiences, work and personal struggles and faith journeys almost our entire adult lives.
And I feel the same sense of family now with the many I communicate with who are diagnosed with cancer. We are all related, not by blood, but by disease. We share a lot. The same fears, the same anger, the same physical, emotional and financial struggles, the same sense of hope and the same sense of loss. We can say "you know how I feel" and we always do. I am inspired by so many I've met with this diagnosis. I have learned so much from them as I continue my own journey. I have been blessed to be part of the cancer community.
So, I was thinking of how rich my life has been. Rich in the best way. Rich in relationships. Rich in people.
There is no greater wealth.
What is Reasonable?
Situation:
I was a resident at Artists Colony X in 1987, 1992, 1994, 1995, 1997, 2000, 2004. One time I was the judge for nonfiction applications. I used to be friendly with the people in charge, but people quit and retire, and move, and I barely know the director now. Anyway, I was offered a residency last year for 2-4 weeks in summer 2007. I decided to postpone it because I wasn't sure how chemo would affect me. Today I talked to the person in charge of residencies and he said he would get back to me in mid-April, after the current applications were processed. The people who applied for summer/fall 2008 would have first priority, then I would get what was left, if anything. I said OK, then about an hour later I became somewhat angry. I couldn't help it that I had to go through chemo. Shouldn't priority be given to the people accepted the year before who had cancer?
More:
A lot of us in Chicago feel too proprietary about this artists colony, because it's so close and so familiar, and we used to be able to stay there almost whenever we wanted. It's tightened up now. Like college, it's harder to get into.
More:
I feel attached to X because I've been there so many times. And taught writing workshops there for the public. Should I make way for people who haven't been there before?
And:
I have asthma and need to have air conditioning or else I wheeze a lot and have to take prednisone. The rooms at X all have a/c units or central air. I've inquired around and I don't know of other artists colonies that have a/c. I turned down a residency a few years ago in Montauk, NY, after it became clear that the housing was ramshackle and moldy and the electricity couldn't support an a/c unit.
I want to be treated special. Is that asking too much?
I was a resident at Artists Colony X in 1987, 1992, 1994, 1995, 1997, 2000, 2004. One time I was the judge for nonfiction applications. I used to be friendly with the people in charge, but people quit and retire, and move, and I barely know the director now. Anyway, I was offered a residency last year for 2-4 weeks in summer 2007. I decided to postpone it because I wasn't sure how chemo would affect me. Today I talked to the person in charge of residencies and he said he would get back to me in mid-April, after the current applications were processed. The people who applied for summer/fall 2008 would have first priority, then I would get what was left, if anything. I said OK, then about an hour later I became somewhat angry. I couldn't help it that I had to go through chemo. Shouldn't priority be given to the people accepted the year before who had cancer?
More:
A lot of us in Chicago feel too proprietary about this artists colony, because it's so close and so familiar, and we used to be able to stay there almost whenever we wanted. It's tightened up now. Like college, it's harder to get into.
More:
I feel attached to X because I've been there so many times. And taught writing workshops there for the public. Should I make way for people who haven't been there before?
And:
I have asthma and need to have air conditioning or else I wheeze a lot and have to take prednisone. The rooms at X all have a/c units or central air. I've inquired around and I don't know of other artists colonies that have a/c. I turned down a residency a few years ago in Montauk, NY, after it became clear that the housing was ramshackle and moldy and the electricity couldn't support an a/c unit.
I want to be treated special. Is that asking too much?
Ticklebee: A tragic romance
WCK has what seems like about 1,000 stuffed animals. Even though she insists on having about 999 of them in bed with her, and even though she has a few who are particularly loved, she's never developed a close relationship with one particular animal. She's never been motivated to give one an original name of her own choosing. Most of her stuffed animals go by names like "Clown", "Frog", "T-Rex", etc. She does have one dinosaur named Chuck, but one of her aunts came up with that one. All of her dolls are named "Baby" except for the one that sits on a little potty and pees water. That one is "Potty Baby." No, WCK just wasn't into naming and bonding with her animals -- until Saturday, that is.
WCK got a little blue dog at an Easter carnival near our house. She fell in love with the dog immediately and announced that his name was "Ticklebee". She then spent the whole afternoon playing with Ticklebee, announcing that "Ticklebee feels really, really sad! No, Ticklebee is really happy! Ticklebee wants to sit on the couch and rest! Ticklebee wants to play!" Ticklebee HAD to sit at the kitchen table and eat some plastic vegetables while WCK ate her own lunch. Jay and I watched grimly, knowing this romance was doomed.
Ticklebee, you see, is a balloon animal, inflated and twisted together by a woman in a clown outfit.
Late Saturday afternoon, WCK announced that Ticklebee wanted to go to Applebee's. Of course, we agreed to go, not wanting to deny Ticklebee his dying wish. Ticklebee was already starting to look old and frail, and he was much thinner than he had been that morning. Amazingly, Ticklebee was still alive when we all woke up on Sunday morning, doing his best to hang in there. He's got quite a will to live, that Ticklebee.
Then, during a particularly rough play session yesterday, WCK accidentally untwisted Ticklebee's back legs and de-poofed his tail. He became half poodle, half lumpy snake creature. WCK cried out in alarm and then said quietly, "Put him away." Then she went off to play with her new sheep puppet, who is named, of course, "Sheep Puppet." The relationship with Ticklebee was over.
The newly deformed Ticklebee is still hanging out in our dining room, mostly because I feel really sorry for him; I actually feel bad about the way my child abandoned him, and I can't bring myself to throw him away. Maybe, I think, I can find a balloon-animal specialist who can help him regain use of his legs. Can you imagine? A tiny car would pull up to our house and a while bunch of clowns would pile out and rush inside and fix him.
I think I need to get out more.
WCK got a little blue dog at an Easter carnival near our house. She fell in love with the dog immediately and announced that his name was "Ticklebee". She then spent the whole afternoon playing with Ticklebee, announcing that "Ticklebee feels really, really sad! No, Ticklebee is really happy! Ticklebee wants to sit on the couch and rest! Ticklebee wants to play!" Ticklebee HAD to sit at the kitchen table and eat some plastic vegetables while WCK ate her own lunch. Jay and I watched grimly, knowing this romance was doomed.
Ticklebee, you see, is a balloon animal, inflated and twisted together by a woman in a clown outfit.
Late Saturday afternoon, WCK announced that Ticklebee wanted to go to Applebee's. Of course, we agreed to go, not wanting to deny Ticklebee his dying wish. Ticklebee was already starting to look old and frail, and he was much thinner than he had been that morning. Amazingly, Ticklebee was still alive when we all woke up on Sunday morning, doing his best to hang in there. He's got quite a will to live, that Ticklebee.
Then, during a particularly rough play session yesterday, WCK accidentally untwisted Ticklebee's back legs and de-poofed his tail. He became half poodle, half lumpy snake creature. WCK cried out in alarm and then said quietly, "Put him away." Then she went off to play with her new sheep puppet, who is named, of course, "Sheep Puppet." The relationship with Ticklebee was over.
The newly deformed Ticklebee is still hanging out in our dining room, mostly because I feel really sorry for him; I actually feel bad about the way my child abandoned him, and I can't bring myself to throw him away. Maybe, I think, I can find a balloon-animal specialist who can help him regain use of his legs. Can you imagine? A tiny car would pull up to our house and a while bunch of clowns would pile out and rush inside and fix him.
I think I need to get out more.
Sunday, March 23, 2008
how aware are you?
This blew me away:
Awareness Test - Watch more free videos
I think I'm going to be very nervous next time I'm on my bike.
Awareness Test - Watch more free videos
I think I'm going to be very nervous next time I'm on my bike.
Sunny Southern California, Riding the Waves
H-dog and I are in LA at the moment. Actually, we're in Santa Monica, but same difference. Dude is sound asleep, while I'm sitting at the kitchen table at our friends Steve and Amy's house, enjoying the blindingly bright sunshine blazing outside. Inside, the air is cool, and I'm warming up with a cup of Irish Breakfast tea (hey, the Irish drink tea too!).
As to be expected, I got a lot of how-are-you-doing's, hugs, head rubs (my head is like a soft downy chick), kisses, smiles, and well wishes. Last night, we went to dine with some friends, and at the table were two other women besides myself who had battled cancer. It wasn't like we intended for it to be like that ("if you don't have cancer, you're not invited!"), but it just happened. So we supported each other, traded chemo war stories, and cast a bunch of downward glances. I felt warm.
LA is always a trip when we come back. On Thursday, my former co-workers at the Asian American Studies Center at UCLA had a lunch for me and H-man. After that, we went to H's brother interment, which was a nice simple quiet ceremony. On Thursday night, H, his sister Trish, my soul sister Mae and her husband George, and I went to Koreatown for some karaoke and Korean food late at night. One of my little secrets (I guess not so secret anymore) is that I LOVE karaoke, even though it hurts to even hear myself sing. So now all these songs are playing on the turntable in my head, especially in the quiet moments....classics like Every Rose Has Its Thorn, 18 and Life, Living on a Prayer, Eternal Flame, Sweet Child O' Mine, and a new favorite--thanks to George--the Monster Mash. It was a blast. I'm going to kick cancer's ass so I can karaoke my little tone-deaf heart out!
On Friday, my dear pal Victoria took me on a pedicure outing in Beverly Hills, so now my toenails are pretty. Unfortunately, my fingernails are still trying to grow out the chemo (tells you how long the chemo stays in the system), so they were unworthy of a mani. But then we had a nice lunch at this little place called Cuvee. It's fun being a girl, especially with Victoria!
Seriously though, I think I needed this trip to tell me that everything going to be alright, and even more so, I want it to be alright, it will be alright, it IS alright. The idea of the surgery has been freaking me out for two months (probably more), but now, I'm looking forward to it. I mean, hell, I get a morphine drip! How fucking kick-ass is that?
Today, we will spend Easter soaking up the sun, seeing more friends, and packing up to head back to Vancouver tomorrow. We miss the kiddins, but anyway, they're having a blast with all four grandparents showering them with attention and doing fun things.
And oh yeah--my CT scans came back clean, except for the arthritis, which we already knew about. So no evidence of metastasis. That's a wonderful thing! Couldn't ask for better news.
One of H's colleagues at UCLA was hoping that we did the little dye job, but I'm still waiting for more hair to grow in before we do that. I'm now starting to consider like a deep pink/magenta-ish dye. We will see.
As to be expected, I got a lot of how-are-you-doing's, hugs, head rubs (my head is like a soft downy chick), kisses, smiles, and well wishes. Last night, we went to dine with some friends, and at the table were two other women besides myself who had battled cancer. It wasn't like we intended for it to be like that ("if you don't have cancer, you're not invited!"), but it just happened. So we supported each other, traded chemo war stories, and cast a bunch of downward glances. I felt warm.
LA is always a trip when we come back. On Thursday, my former co-workers at the Asian American Studies Center at UCLA had a lunch for me and H-man. After that, we went to H's brother interment, which was a nice simple quiet ceremony. On Thursday night, H, his sister Trish, my soul sister Mae and her husband George, and I went to Koreatown for some karaoke and Korean food late at night. One of my little secrets (I guess not so secret anymore) is that I LOVE karaoke, even though it hurts to even hear myself sing. So now all these songs are playing on the turntable in my head, especially in the quiet moments....classics like Every Rose Has Its Thorn, 18 and Life, Living on a Prayer, Eternal Flame, Sweet Child O' Mine, and a new favorite--thanks to George--the Monster Mash. It was a blast. I'm going to kick cancer's ass so I can karaoke my little tone-deaf heart out!
On Friday, my dear pal Victoria took me on a pedicure outing in Beverly Hills, so now my toenails are pretty. Unfortunately, my fingernails are still trying to grow out the chemo (tells you how long the chemo stays in the system), so they were unworthy of a mani. But then we had a nice lunch at this little place called Cuvee. It's fun being a girl, especially with Victoria!
Seriously though, I think I needed this trip to tell me that everything going to be alright, and even more so, I want it to be alright, it will be alright, it IS alright. The idea of the surgery has been freaking me out for two months (probably more), but now, I'm looking forward to it. I mean, hell, I get a morphine drip! How fucking kick-ass is that?
Today, we will spend Easter soaking up the sun, seeing more friends, and packing up to head back to Vancouver tomorrow. We miss the kiddins, but anyway, they're having a blast with all four grandparents showering them with attention and doing fun things.
And oh yeah--my CT scans came back clean, except for the arthritis, which we already knew about. So no evidence of metastasis. That's a wonderful thing! Couldn't ask for better news.
One of H's colleagues at UCLA was hoping that we did the little dye job, but I'm still waiting for more hair to grow in before we do that. I'm now starting to consider like a deep pink/magenta-ish dye. We will see.
Saturday, March 22, 2008
Cancer Bitch on Radio, Sans Cancer
I have a short essay, Marching, that will be broadcast Monday morning on the 848 show on Chicago Public Radio. No mention of cancer. No mention of bitch. But there are references to the "enema man."
Annual Transplant Exam (PaperWork)
I received my paperwork today, containing my schedule for my annual transplant evaluation. The paperwork consisted of various appointments I would have with the transplant doctors, other specialist, and a little surprise.
Transplant doctors related appointments:
Day 1:
First and foremost staving NPO (no food or water) from midnight the night before my first appointment until after my bronchcoscopy at 1400 on Thursday 4/10/08; 2 to 3 hours after the procedure. If you are counting that is about 17 to 18 hours because you really can’t eat until 1600 to 1700; a long time without food.
Blood work
Abdominal / Aorta ultrasound
Chest X-Ray / CT Scan
Bone Density Scan
Bronch (Biopsy and wash of lungs)
Day 2:
NPO (no food or water/drink) after midnight.
Barium swallow (chest and abdomen) X-Ray
PFT’s (pulmonary function test), 6 minute walk
Other doctors / medical specialist:
Dermatologist
Dentist / Orthodontist
Eye Exam (check for glaucoma, Cataracts, CMV and Retinitis)
Prostate Exam (this test might not take place for the obvious reasons i.e. male ego at play here need I say more)
The Little Surprise:
Had a little package included with the schedule that the hospital sent to me to have another test/cancer screen done. In an effort to keep this story short, sweet and maintain my journalistic integrity as a professional (ha ha ha) I am supposed to capture my fecal matter for a colorectal cancer screen over three days. The funny thing is I didn’t receive any glove, mask, or hasmat suits to collect this SH*T I mean stuff and mail it back. I guess the post office is a logistical marvel as they do move a lot of SH*T.
Transplant doctors related appointments:
Day 1:
First and foremost staving NPO (no food or water) from midnight the night before my first appointment until after my bronchcoscopy at 1400 on Thursday 4/10/08; 2 to 3 hours after the procedure. If you are counting that is about 17 to 18 hours because you really can’t eat until 1600 to 1700; a long time without food.
Blood work
Abdominal / Aorta ultrasound
Chest X-Ray / CT Scan
Bone Density Scan
Bronch (Biopsy and wash of lungs)
Day 2:
NPO (no food or water/drink) after midnight.
Barium swallow (chest and abdomen) X-Ray
PFT’s (pulmonary function test), 6 minute walk
Other doctors / medical specialist:
Dermatologist
Dentist / Orthodontist
Eye Exam (check for glaucoma, Cataracts, CMV and Retinitis)
Prostate Exam (this test might not take place for the obvious reasons i.e. male ego at play here need I say more)
The Little Surprise:
Had a little package included with the schedule that the hospital sent to me to have another test/cancer screen done. In an effort to keep this story short, sweet and maintain my journalistic integrity as a professional (ha ha ha) I am supposed to capture my fecal matter for a colorectal cancer screen over three days. The funny thing is I didn’t receive any glove, mask, or hasmat suits to collect this SH*T I mean stuff and mail it back. I guess the post office is a logistical marvel as they do move a lot of SH*T.
Friday, March 21, 2008
It's funny 'cause it's true
When WCK and I got home from gymnastics today, there was a package from my parents waiting on our porch. Usually I like to save opening of packages until after naptime, because of the intense excitement that's always involved, but WCK had already spotted the package. After about two minutes of nonstop "What's in there, Mommy? What's in there, Mommy? What's in there, Mommy?" I caved in. Inside was a beautiful new Easter book for WCK and a pair of coordinating t-shirts for both of us.
My t-shirt says, "me."
WCK's t-shirt says, "mini-me."
Heh.
My t-shirt says, "me."
WCK's t-shirt says, "mini-me."
Heh.
From the Ashes
I don't know if "reruns" are allowed in the blog world, but I posted this one for the first time almost a year ago. I thought that because I've been talking about pain in this life, and because it's the first day of spring, maybe it would be okay to rerun this particular blog entry. Good things do come from pain. Be sure to watch the video, it's amazing.
In this entry I want to do something different. Celebrate the cancer experience.
Yes it's tough. It knocks us to our knees, it humbles us, it changes us forever. Only we who have "been there done that" really understand how it changes us, what it does to our hearts and souls and bodies. But we become part of a new community of survivors, and many of us love that community and the people we meet here. Someone spoke to me recently about the different ways each of us "rise out of the ashes" of our cancer experience. I think most of us are changed for the better.
I see life nowadays as a school, problems are the curriculum. Bigger problems are the tougher classes. Those of us living with a cancer diagnosis have been taking the advanced classes, the astrophysics courses of life. Sometimes I think of the "Why Me" part of the experience and think in reality, maybe it was because I was worthy of a promotion to advanced life courses? Maybe I got to skip a grade? At this point I am very grateful for what I have learned. I am actually thankful for the experience.
I know, it's easy for me to say that, I've already out-lived my life expectancy and made it to the 5 year mark. I've only recently been able to feel grateful for the experience.
I got to thinking that many of the truly honorable and good things I see in our society started from profoundly painful beginnings.
I am a musician, as are my daughters. One of my daughters just turned me on to this video on Youtube. Wow. I've watched it over and over. I love the video, I love the lyrics, I love the music. Please watch the video and listen to the music. It documents some great things that have resulted from very difficult circumstances.
* Nickelback - If Everyone Cared:
I would like anyone who knows of more examples like this--a difficult time someone experienced that motivated them to make a positive change in our world, large or small, to please let me know the story or to add it as a comment to my blog. I'd like to celebrate the good things that come from tough times, celebrate the good that comes from even a cancer diagnosis.
I'll start. I recently met a man who experienced some difficult events in his life (not cancer), and was motivated to start this organization. Check out his "Special Spectators Video Montage" under "Media Coverage". Be sure you have your sound on. I am proud to have recently met Blake, who founded the organization below:
Special Spectators
I have another new cancer survivor friend who started this organization:
Immerman Angels
Anyone else have examples of great things that have arisen out of the ashes of someones difficult journey?
In this entry I want to do something different. Celebrate the cancer experience.
Yes it's tough. It knocks us to our knees, it humbles us, it changes us forever. Only we who have "been there done that" really understand how it changes us, what it does to our hearts and souls and bodies. But we become part of a new community of survivors, and many of us love that community and the people we meet here. Someone spoke to me recently about the different ways each of us "rise out of the ashes" of our cancer experience. I think most of us are changed for the better.
I see life nowadays as a school, problems are the curriculum. Bigger problems are the tougher classes. Those of us living with a cancer diagnosis have been taking the advanced classes, the astrophysics courses of life. Sometimes I think of the "Why Me" part of the experience and think in reality, maybe it was because I was worthy of a promotion to advanced life courses? Maybe I got to skip a grade? At this point I am very grateful for what I have learned. I am actually thankful for the experience.
I know, it's easy for me to say that, I've already out-lived my life expectancy and made it to the 5 year mark. I've only recently been able to feel grateful for the experience.
I got to thinking that many of the truly honorable and good things I see in our society started from profoundly painful beginnings.
I am a musician, as are my daughters. One of my daughters just turned me on to this video on Youtube. Wow. I've watched it over and over. I love the video, I love the lyrics, I love the music. Please watch the video and listen to the music. It documents some great things that have resulted from very difficult circumstances.
* Nickelback - If Everyone Cared:
I would like anyone who knows of more examples like this--a difficult time someone experienced that motivated them to make a positive change in our world, large or small, to please let me know the story or to add it as a comment to my blog. I'd like to celebrate the good things that come from tough times, celebrate the good that comes from even a cancer diagnosis.
I'll start. I recently met a man who experienced some difficult events in his life (not cancer), and was motivated to start this organization. Check out his "Special Spectators Video Montage" under "Media Coverage". Be sure you have your sound on. I am proud to have recently met Blake, who founded the organization below:
Special Spectators
I have another new cancer survivor friend who started this organization:
Immerman Angels
Anyone else have examples of great things that have arisen out of the ashes of someones difficult journey?
in defense of universal health care
My friend Sara has just written the most beautiful, moving and utterly persuasive post in favour of universal health care that I have ever read.
Thursday, March 20, 2008
Few Women Have Regrets When Choosing Preventive Mastectomy for Other Breast
by Ann M. Geiger and others
Is this for me? If you have been diagnosed with breast cancer in one breast and are considering having the other breast removed to reduce your risk of developing a new breast cancer or having the cancer coming back, you might want to read this article.
Background and importance of the study: If you have been diagnosed with breast cancer, your risk of developing a new cancer is higher than that of a woman who has never had the disease. The size of this risk varies from person to person, because each person has different risk factors. For the average woman who has had breast cancer, the risk of developing a new and different breast cancer in the other breast (not a recurrence of the first one) is about 1% per year. This means a risk of about 10% over 10 years. Put differently, out of 100 women who have a personal history of the disease, about 10 will get a new breast cancer on the other side within 10 years.
The risk of a new breast cancer is higher for women who have additional risk factors. If you've been diagnosed with breast cancer and also have a strong family history of the disease, your risk is likely to be higher than 1% a year. If you have a proven genetic abnormality, your risk is even higher. If you have both a strong family history of breast cancer AND a known breast cancer gene abnormality, on top of a personal history of breast cancer, the risk is higher still. The range of higher risk is about 2% to 5% per year, depending on all of these factors, plus other things that might affect how an abnormal gene behaves. Over 10 years, this translates to a risk that ranges from 20% to 50%.
If you have a personal history of breast cancer plus other risk factors for a new breast cancer, it's important for you to help reduce your risk. You may want to seriously consider extra preventive measures, including lifestyle changes, medications, and surgery.
Preventive surgery to remove the other breast is a serious option with real benefits and side effects. While removing the breast can substantially reduce your risk of breast cancer, it involves permanent changes that can change your quality of life. The higher your risk of breast cancer, the more likely you are to benefit from preventive surgery. Removal of the breast can decrease the risk of a new breast cancer by about 90%. That's a big reduction. If your risk is estimated to be 80%, it could be lowered to about 8% by preventive breast removal. If your risk is 10%, it could be lowered to 1%.
The surgical option of breast removal is called "prophylactic," which means "preventive." If you take this step, you are doing something that will significantly reduce your risk for cancer in the future (although there is no guarantee). This option is permanent and irreversible.
Earlier studies have shown that for women with a personal history of breast cancer and other strong risk factors, preventive removal of the other breast (called contralateral mastectomy) reduces their risk of developing a new cancer and is associated with improved survival. Up to this point, however, no one had looked at how happy or satisfied women were with their choice.
In this study, the researchers asked women how content they were with their choice to have or not have preventive mastectomy.
Study design: In this study, the researchers asked 772 women who had preventive mastectomy and 105 who didn't have preventive mastectomy how content they were with their choice.
All the women had been diagnosed with breast cancer in one breast between 1979 and 1999 at one of six Cancer Research Network health care system centers in the United States. The women were aged 18 to 80.
To determine how content women were with their preventive mastectomy choice, the researchers mailed them a survey that asked questions about:
1) quality of life,
2) satisfaction with the surgery,
3) body image,
4) sexual satisfaction,
5) depression,
6) breast cancer thoughts, and
7) health perception.
About 73% of the surveys were returned, from 519 women who had preventive mastectomy and 61 women who didn't. Of those 61 women, 30 had single mastectomy and 31 had lumpectomy.
The research was funded by the National Cancer Institute.
Results: Of the 519 women who had preventive mastectomy, 86.5% were satisfied with the procedure and had no second thoughts about it, and 76% were very content with their quality of life.
Similarly, of the 61 women who did not have preventive surgery, 75% were very content with their quality of life.
There was no association between women reporting having a lower quality of life and having had preventive mastectomy or breast reconstruction, or with the women's age, race, education, or body mass index. But a lower quality of life WAS linked to:
1) poor perception of one's own general health,
2) possible depression,
3) unhappiness or self-consciousness about appearance,
4) unhappiness with sex life, and
5) feeling the need to avoid thoughts of breast cancer.
The results also showed that almost 75% of the women who didn't have preventive mastectomy were concerned about breast cancer, compared to 50% of the women who had the preventive surgery.
Conclusions: The researchers concluded that most women who have preventive mastectomy are satisfied with their choice and report having a good quality of life. The women who had preventive mastectomy were less likely than the other women to be concerned about breast cancer.
Women who reported having a lower quality of life were more likely to have poor body image, be unhappy with their sex life, possibly be depressed, feel the need to avoid thoughts of breast cancer, and have a poor general health perception.
Take-home message: If you have been diagnosed with breast cancer in one breast and are considering a preventive mastectomy, this study offers strong support that no matter which decision you make, you are likely to be content with that decision later.
More than 75% of women in each group were very content with their quality of life. The adage "whatever decision you make will be right for you" seems to carry truth for women grappling with this decision.
Of course, you need to balance the potential benefits of preventive surgery against the side effects. Every woman is unique. How you balance the benefits and side effects in your own situation is very personal.
In general, factors that might make you more likely to choose preventive mastectomy are:
1) a strong family history of breast cancer,
2) a serious diagnosis of breast cancer in the other breast,
3) being very fearful of another cancer,
4) lacking confidence in the power of early detection, and
5) feeling determined to never go through cancer therapy again.
This wasn't a randomized study, in which women are assigned to different groups. Every woman made her own decisions, and the women who chose preventive surgery are probably different in many ways from the women who chose not to have this procedure. As a result, comparing the two groups has limited value.
You probably know that we all need to believe in the big decisions we make—particularly important decisions about our health. But even when we get used to a big decision, it's normal to have mixed feelings. Although mastectomy can give women more peace of mind, it's also normal for women to have concerns about their body image and to miss their breast.
Also remember that no procedure—even surgery—totally eliminates the risk of cancer. Even when a breast has been removed, cancer can still develop in the area where the breast used to be. Close follow-up is necessary for all women, even after preventive surgery.
You have time to decide. The decision to have preventive surgery is not an emergency. Of course, the decision to have preventive surgery at any age requires much thought, and must be made in consultation with your health care team.
Learn about surgical options for breast reconstruction here.
SOURCE: Journal of Clinical Oncology; breastcancer.org
******
Is this for me? If you have been diagnosed with breast cancer in one breast and are considering having the other breast removed to reduce your risk of developing a new breast cancer or having the cancer coming back, you might want to read this article.
Background and importance of the study: If you have been diagnosed with breast cancer, your risk of developing a new cancer is higher than that of a woman who has never had the disease. The size of this risk varies from person to person, because each person has different risk factors. For the average woman who has had breast cancer, the risk of developing a new and different breast cancer in the other breast (not a recurrence of the first one) is about 1% per year. This means a risk of about 10% over 10 years. Put differently, out of 100 women who have a personal history of the disease, about 10 will get a new breast cancer on the other side within 10 years.
The risk of a new breast cancer is higher for women who have additional risk factors. If you've been diagnosed with breast cancer and also have a strong family history of the disease, your risk is likely to be higher than 1% a year. If you have a proven genetic abnormality, your risk is even higher. If you have both a strong family history of breast cancer AND a known breast cancer gene abnormality, on top of a personal history of breast cancer, the risk is higher still. The range of higher risk is about 2% to 5% per year, depending on all of these factors, plus other things that might affect how an abnormal gene behaves. Over 10 years, this translates to a risk that ranges from 20% to 50%.
If you have a personal history of breast cancer plus other risk factors for a new breast cancer, it's important for you to help reduce your risk. You may want to seriously consider extra preventive measures, including lifestyle changes, medications, and surgery.
Preventive surgery to remove the other breast is a serious option with real benefits and side effects. While removing the breast can substantially reduce your risk of breast cancer, it involves permanent changes that can change your quality of life. The higher your risk of breast cancer, the more likely you are to benefit from preventive surgery. Removal of the breast can decrease the risk of a new breast cancer by about 90%. That's a big reduction. If your risk is estimated to be 80%, it could be lowered to about 8% by preventive breast removal. If your risk is 10%, it could be lowered to 1%.
The surgical option of breast removal is called "prophylactic," which means "preventive." If you take this step, you are doing something that will significantly reduce your risk for cancer in the future (although there is no guarantee). This option is permanent and irreversible.
Earlier studies have shown that for women with a personal history of breast cancer and other strong risk factors, preventive removal of the other breast (called contralateral mastectomy) reduces their risk of developing a new cancer and is associated with improved survival. Up to this point, however, no one had looked at how happy or satisfied women were with their choice.
In this study, the researchers asked women how content they were with their choice to have or not have preventive mastectomy.
Study design: In this study, the researchers asked 772 women who had preventive mastectomy and 105 who didn't have preventive mastectomy how content they were with their choice.
All the women had been diagnosed with breast cancer in one breast between 1979 and 1999 at one of six Cancer Research Network health care system centers in the United States. The women were aged 18 to 80.
To determine how content women were with their preventive mastectomy choice, the researchers mailed them a survey that asked questions about:
1) quality of life,
2) satisfaction with the surgery,
3) body image,
4) sexual satisfaction,
5) depression,
6) breast cancer thoughts, and
7) health perception.
About 73% of the surveys were returned, from 519 women who had preventive mastectomy and 61 women who didn't. Of those 61 women, 30 had single mastectomy and 31 had lumpectomy.
The research was funded by the National Cancer Institute.
Results: Of the 519 women who had preventive mastectomy, 86.5% were satisfied with the procedure and had no second thoughts about it, and 76% were very content with their quality of life.
Similarly, of the 61 women who did not have preventive surgery, 75% were very content with their quality of life.
There was no association between women reporting having a lower quality of life and having had preventive mastectomy or breast reconstruction, or with the women's age, race, education, or body mass index. But a lower quality of life WAS linked to:
1) poor perception of one's own general health,
2) possible depression,
3) unhappiness or self-consciousness about appearance,
4) unhappiness with sex life, and
5) feeling the need to avoid thoughts of breast cancer.
The results also showed that almost 75% of the women who didn't have preventive mastectomy were concerned about breast cancer, compared to 50% of the women who had the preventive surgery.
Conclusions: The researchers concluded that most women who have preventive mastectomy are satisfied with their choice and report having a good quality of life. The women who had preventive mastectomy were less likely than the other women to be concerned about breast cancer.
Women who reported having a lower quality of life were more likely to have poor body image, be unhappy with their sex life, possibly be depressed, feel the need to avoid thoughts of breast cancer, and have a poor general health perception.
Take-home message: If you have been diagnosed with breast cancer in one breast and are considering a preventive mastectomy, this study offers strong support that no matter which decision you make, you are likely to be content with that decision later.
More than 75% of women in each group were very content with their quality of life. The adage "whatever decision you make will be right for you" seems to carry truth for women grappling with this decision.
Of course, you need to balance the potential benefits of preventive surgery against the side effects. Every woman is unique. How you balance the benefits and side effects in your own situation is very personal.
In general, factors that might make you more likely to choose preventive mastectomy are:
1) a strong family history of breast cancer,
2) a serious diagnosis of breast cancer in the other breast,
3) being very fearful of another cancer,
4) lacking confidence in the power of early detection, and
5) feeling determined to never go through cancer therapy again.
This wasn't a randomized study, in which women are assigned to different groups. Every woman made her own decisions, and the women who chose preventive surgery are probably different in many ways from the women who chose not to have this procedure. As a result, comparing the two groups has limited value.
You probably know that we all need to believe in the big decisions we make—particularly important decisions about our health. But even when we get used to a big decision, it's normal to have mixed feelings. Although mastectomy can give women more peace of mind, it's also normal for women to have concerns about their body image and to miss their breast.
Also remember that no procedure—even surgery—totally eliminates the risk of cancer. Even when a breast has been removed, cancer can still develop in the area where the breast used to be. Close follow-up is necessary for all women, even after preventive surgery.
You have time to decide. The decision to have preventive surgery is not an emergency. Of course, the decision to have preventive surgery at any age requires much thought, and must be made in consultation with your health care team.
Learn about surgical options for breast reconstruction here.
SOURCE: Journal of Clinical Oncology; breastcancer.org
******
boiling blood
I can't stop thinking about this story.
This should never, ever have happened. And so many medical professionals contributed to the problem.
It makes me furious.
Beverly Green, who is featured in this article (and was on the front page of the Globe and Mail last week end) is 45 years old and dying of liver metastasis. She found out way too late that she should have been given Tamoxifen.
I know that the government review being conducted will not lay criminal responsibility but I would really like to see some heads roll.
This should never, ever have happened. And so many medical professionals contributed to the problem.
It makes me furious.
Beverly Green, who is featured in this article (and was on the front page of the Globe and Mail last week end) is 45 years old and dying of liver metastasis. She found out way too late that she should have been given Tamoxifen.
I know that the government review being conducted will not lay criminal responsibility but I would really like to see some heads roll.
Wednesday, March 19, 2008
Why do bad things happen?
I guess it's the kind of the age-old unanswered question. I've seen lots of bad things happen over the past 25 years I've been a nurse. A toddler drowned trying to retrieve a toy from a 5 gallon bucket of water, a 16 year old felt he was indestructible and became an organ donor after losing a game of Russian Roulette, a family lost both of their children to two different types of cancer in two years, a colleague died of melanoma after decorating for what she knew would be her last Christmas with her children. A teen became a forever quadraplegic after being struck by a stray bullet in a bad neighborhood, a young mother died of an asthma attack just after giving birth to her first and much waited for daughter, my four year old disabled nephew died, a woman was diagnosed with advanced appendix cancer 4 hours after giving birth to a child she waited nine years to conceive. On and on.
Bad things happen to good people all of the time. I've been a witness to that for decades. Faith in an all-loving and all-powerful God doesn't seem to offer much protection from life's difficulties. God lets bad things happen all the time. God often answers no to prayers.
What I'd seen before as a nurse is only compounded by what I've seen as an almost 7 year member of the cancer community. Life is tough, life is hard, life is very often very unfair. The unfairness is sometimes incomprehensible.
I read several books on my journey back to faith...including many good ones by Philip Yancey. He asks the questions many of us are afraid to ask. I love his fearless honesty. Disappointment with God, Where is God When it Hurts?, Prayer: Does it Make any Difference?, Soul Survivor: How My Faith Survived the Church, Church: Why Bother?. Those are titles of some of his books. He asks the tough questions out loud, and I tag along reading his books as he searches for answers. I am grateful for the work he does for me. I have asked and often still ask all of those same questions.
In one of his books, Yancey explores a case of children institutionalized in communist Germany who were severely mentally handicapped and totally dependent. Children who never served a "purpose" in the way most of us define purpose. Many people who were involved in the handicapped children's care were later interviewed, and it turned out they had been profoundly affected. They developed patience and tolerance. They developed a sense of appreciation for wellness. They felt needed and significant. It turned out the handicapped children had a profound effect on many of the people who'd been in contact with them. The children made a difference in a way many of us who are able-bodied will never. Their lives, their suffering, had purpose and meaning.
I think of Abraham Lincoln....he grew up in poverty, his mother died when he was only 10, he was estranged from his father, both of his siblings died, the step-mother he loved suffered from mental illness, three of his own four children died before reaching adulthood. I wonder if maybe all of those circumstances in the end carved his character and made him the person who was able to liberate thousands of people, who fought for justice, who changed our country forever.
I now see this life as very short in light of eternity. We are really just here for an instant. I think now that the tough things we experience are really just short blips in the grand scheme of things. They are dark threads in a tapestry we only see from the underside now but will one day appreciate when can we see the whole work of art. Though overwhelming now, pain is actually a very temporary thing.
I now truly trust there is an artwork in progess, and I dream of seeing the finished product, of having the answers, of being able to understand what is so illusive now from our perspective here.
I trust and believe that one day we will have those answers, that it will all make sense. And I very much look forward to that day. When we will see the beauty from the ashes. It's what Easter is all about.
Bad things happen to good people all of the time. I've been a witness to that for decades. Faith in an all-loving and all-powerful God doesn't seem to offer much protection from life's difficulties. God lets bad things happen all the time. God often answers no to prayers.
What I'd seen before as a nurse is only compounded by what I've seen as an almost 7 year member of the cancer community. Life is tough, life is hard, life is very often very unfair. The unfairness is sometimes incomprehensible.
I read several books on my journey back to faith...including many good ones by Philip Yancey. He asks the questions many of us are afraid to ask. I love his fearless honesty. Disappointment with God, Where is God When it Hurts?, Prayer: Does it Make any Difference?, Soul Survivor: How My Faith Survived the Church, Church: Why Bother?. Those are titles of some of his books. He asks the tough questions out loud, and I tag along reading his books as he searches for answers. I am grateful for the work he does for me. I have asked and often still ask all of those same questions.
In one of his books, Yancey explores a case of children institutionalized in communist Germany who were severely mentally handicapped and totally dependent. Children who never served a "purpose" in the way most of us define purpose. Many people who were involved in the handicapped children's care were later interviewed, and it turned out they had been profoundly affected. They developed patience and tolerance. They developed a sense of appreciation for wellness. They felt needed and significant. It turned out the handicapped children had a profound effect on many of the people who'd been in contact with them. The children made a difference in a way many of us who are able-bodied will never. Their lives, their suffering, had purpose and meaning.
I think of Abraham Lincoln....he grew up in poverty, his mother died when he was only 10, he was estranged from his father, both of his siblings died, the step-mother he loved suffered from mental illness, three of his own four children died before reaching adulthood. I wonder if maybe all of those circumstances in the end carved his character and made him the person who was able to liberate thousands of people, who fought for justice, who changed our country forever.
I now see this life as very short in light of eternity. We are really just here for an instant. I think now that the tough things we experience are really just short blips in the grand scheme of things. They are dark threads in a tapestry we only see from the underside now but will one day appreciate when can we see the whole work of art. Though overwhelming now, pain is actually a very temporary thing.
I now truly trust there is an artwork in progess, and I dream of seeing the finished product, of having the answers, of being able to understand what is so illusive now from our perspective here.
I trust and believe that one day we will have those answers, that it will all make sense. And I very much look forward to that day. When we will see the beauty from the ashes. It's what Easter is all about.
My other car is a Doom Buggy
We're back! Actually, we've been back for a few days, but I didn't go anywhere near a computer for a full week, and I'm way, way behind on all of my e-mail and blogging. If you sent me an e-mail and I haven't written back, I'm not ignoring you; I'm just overwhelmed by the e-mail flood. Anyway, DISNEY. WAS. GREAT. For the first two days I was there, Jay still had to go to all of his meetings during the day, so I was on my own at the hotel. I had to make some really tough decisions during those two days: Did I want to lie around on a chair by the pool or lie in a hammock on the (fake) beach? Did I want to go get a massage in the morning or in the afternoon? Did I want a strawberry smoothie or a pina colada one?
It was rough.
Then we spent an evening at Epcot and two full days at Disney's Hollywood Studios and the Magic Kingdom. Jay and I now have master theme park skills; through a combination of early arrival, skill, luck, and the Fast Pass system, we got to go on every ride and see every show that we wanted, and we never had to wait in line longer than five or ten minutes. We barely had to wait at all to meet Mickey Mouse. We got to ride the Greatest Ride in the History of the Universe -- that would be The Haunted Mansion -- twice. Without waiting.
While I was searching the web for a Haunted Mansion photo, I found a HM fan web site that sells bumper stickers that say, "My other car is a Doom Buggy." I want one. No, I NEEEEEEED one. (By the way, I think this photo is from the movie, which was lame. I'm still bitter about it. The photo has the same ghosts from the ride, though)
As for WCK, she had a great time at Grandma and Grandpa's house. She got to go to the zoo, bake sugar cookies, watch violent cartoons, eat pizza, and skip naps. I'm sure she had an even better time than we did.
It was rough.
Then we spent an evening at Epcot and two full days at Disney's Hollywood Studios and the Magic Kingdom. Jay and I now have master theme park skills; through a combination of early arrival, skill, luck, and the Fast Pass system, we got to go on every ride and see every show that we wanted, and we never had to wait in line longer than five or ten minutes. We barely had to wait at all to meet Mickey Mouse. We got to ride the Greatest Ride in the History of the Universe -- that would be The Haunted Mansion -- twice. Without waiting.
While I was searching the web for a Haunted Mansion photo, I found a HM fan web site that sells bumper stickers that say, "My other car is a Doom Buggy." I want one. No, I NEEEEEEED one. (By the way, I think this photo is from the movie, which was lame. I'm still bitter about it. The photo has the same ghosts from the ride, though)
As for WCK, she had a great time at Grandma and Grandpa's house. She got to go to the zoo, bake sugar cookies, watch violent cartoons, eat pizza, and skip naps. I'm sure she had an even better time than we did.
feeling well. and irony noted.
I had my regular oncologist appointment today.
The thought occurred to me, as I readied myself to go, that I am feeling healthier these days than I did before my diagnosis.
It took cancer to get me to take care of myself.
The thought occurred to me, as I readied myself to go, that I am feeling healthier these days than I did before my diagnosis.
It took cancer to get me to take care of myself.
Country Roads
I'm taking off today for West Virginia for a week to visit family and friends. I may go through a bit of withdraw because I'm not bringing my laptop, but I'll try to make it to the library at least once to use the computer.
Tuesday, March 18, 2008
Faith
My personal faith is something I don't talk about a lot, though I allude to it here now and then. I struggled with faith for a long time. For many reasons.
I grew up in a Christian household. We went to church a lot. We wore our Sunday best and sat still for hours in church on Sundays. I didn't like the music that sounded to me like funeral dirges, and I can't remember a single thing I learned from a sermon. I felt the God I met as a child was a god who only loved me when I was stiff and formal and wearing clothes I hated while singing songs I didn't like. I dreaded Sundays, but loved Saturdays when I could climb trees in my blue jeans. When I was a kid, weekends had a good day, Saturday, and a bad day, Sunday. I dreaded heaven as I heard it was a place where we would worship God forever.....an eternity of Sundays.
My father was a good man, but like many fathers of my generation, he was the rulemaker and disciplinarian, not someone I had a personal or close relationship with, not someone I shared my troubles with or confided in. So the idea of a personal relationship with my heavenly father was a difficult one for me to accept. It was easier for me to accept a God who's relationship with us was to set rules and to disipline us when we broke them.
My eldest sister left for college when I was 13, and when she did I was crushed to lose one of my best friends, she'd been my hero until then. I was confused, though, when she came back...she had been "saved" and had become an Christian who quoted Bible verses often and talked of redemption. She made me read The Late Great Planet Earth so that when the end of the world came I wouldn't go to hell. I'd only been contemplating high school until then. I hurriedly said the sinner's prayer and bought a cross necklace just in case she and Hal Lindsey were right and the anti-Christ was in the world heralding the final Armageddon and the end of us all. My heart wasn't in it though. I didn't want to display and live the religious fervor she did, it just wasn't me. It made me uncomfortable.
Then my grandmother died of cancer. She and I had been very close; I even helped care for her when she was in the final and painful stages of the disease. She and I read many books together, books I loved...Jonathan Livingston Seagull and Khalil Gibran's "The Prophet" were two. She only left me one thing, though, when she died. A personally inscribed Bible. Just before she died she solemnly told me it was her final gift to me . She had never been particularly religious. She'd even told me once she'd rather spend an afternoon with a good book than a bunch of church ladies, though she attended church. I was intrigued at her final gift to me. So I decided to give her Bible a try. I don't know why, but I only read the gospels after her memorial service.
I was surprised by what I read. I really liked Jesus a lot. I'd never met him in my church. This Jesus even loved, accepted and spent time with people who sinned sexually and cheated other people. He loved everyone. He had the most contempt for the upright judgmental religious people and let them know that regularly. He didn't even own a change of clothes (so much for proper Sunday dress) and preached outside in the grass sometimes while providing a picnic lunch to his listeners. He attended parties and drank wine. He chose as one of his first missionaries a woman who'd been married multiple times and was living in sin. He loved and accepted everyone.
And when he died and came back, he showed everyone that you receive a physical body after death, one that can be touched and hugged. He could still eat food in his new body; one of the first things he did when he returned in his new body was to have breakfast with his friends. But his new body could also overcome the laws of physics and pass through time and space and locked doors. Wow. And when he left he didn't even leave us with a lot of rules, just asked us to love him and to love each other, even when loving wasn't easy. And if we failed at even that, he would still forgive and accept us.
I followed that Jesus until I'd been in an abusive marriage for 7 years and decided I couldn't keep turning the other cheek, I couldn't love my enemies. I left Jesus when I left the marriage in my early 20s. I still believed, I just didn't think I had what it took to be a follower.
And I stayed away. Until 2001. Until cancer. Until I met an enemy I was totally powerless against, until I needed help bigger than I could find in this world. But it was still a long and difficult road back. Full of questions and challenges and even anger.
I now have a great faith and a great trust in God. I am sure of His presence in my life. I am not a religious fanatic, I'm actually not very "religious" at all. I attend an organized church, though kind of sporadically. I wear blue jeans to church and my church has a band with drums and the minister preaches in khakis. My best church, though, where I really connect with my God, is in the wilderness among trees and birds. Where the Monarchs butterflies are, where spring wild flowers bloom, where acorns become great oak trees. I also feel that connection when I play music.
I am sorry for the way Christianity is often portrayed by Christians today. I am reading a book "Unchristian", I truly love it. I think every Christian should read it. It talks about what the Christian faith as portrayed in America looks like to many outsiders.....our image is not a good one. It talks about people like myself, who are afraid we'll alienate others when we identify our faith. My church now hesitates to use the word "Christian" to describe us as the word has come to portray such a negative image to so many. My church is trying instead to use the term "Christ followers" to refer to us. And to remind us just what a Christ follower does....just loves other people, all people, first and foremost, to the best of our ability. It is what motivated me to construct my web site and to start this blog and to try to help others with cancer.
I grew up in a Christian household. We went to church a lot. We wore our Sunday best and sat still for hours in church on Sundays. I didn't like the music that sounded to me like funeral dirges, and I can't remember a single thing I learned from a sermon. I felt the God I met as a child was a god who only loved me when I was stiff and formal and wearing clothes I hated while singing songs I didn't like. I dreaded Sundays, but loved Saturdays when I could climb trees in my blue jeans. When I was a kid, weekends had a good day, Saturday, and a bad day, Sunday. I dreaded heaven as I heard it was a place where we would worship God forever.....an eternity of Sundays.
My father was a good man, but like many fathers of my generation, he was the rulemaker and disciplinarian, not someone I had a personal or close relationship with, not someone I shared my troubles with or confided in. So the idea of a personal relationship with my heavenly father was a difficult one for me to accept. It was easier for me to accept a God who's relationship with us was to set rules and to disipline us when we broke them.
My eldest sister left for college when I was 13, and when she did I was crushed to lose one of my best friends, she'd been my hero until then. I was confused, though, when she came back...she had been "saved" and had become an Christian who quoted Bible verses often and talked of redemption. She made me read The Late Great Planet Earth so that when the end of the world came I wouldn't go to hell. I'd only been contemplating high school until then. I hurriedly said the sinner's prayer and bought a cross necklace just in case she and Hal Lindsey were right and the anti-Christ was in the world heralding the final Armageddon and the end of us all. My heart wasn't in it though. I didn't want to display and live the religious fervor she did, it just wasn't me. It made me uncomfortable.
Then my grandmother died of cancer. She and I had been very close; I even helped care for her when she was in the final and painful stages of the disease. She and I read many books together, books I loved...Jonathan Livingston Seagull and Khalil Gibran's "The Prophet" were two. She only left me one thing, though, when she died. A personally inscribed Bible. Just before she died she solemnly told me it was her final gift to me . She had never been particularly religious. She'd even told me once she'd rather spend an afternoon with a good book than a bunch of church ladies, though she attended church. I was intrigued at her final gift to me. So I decided to give her Bible a try. I don't know why, but I only read the gospels after her memorial service.
I was surprised by what I read. I really liked Jesus a lot. I'd never met him in my church. This Jesus even loved, accepted and spent time with people who sinned sexually and cheated other people. He loved everyone. He had the most contempt for the upright judgmental religious people and let them know that regularly. He didn't even own a change of clothes (so much for proper Sunday dress) and preached outside in the grass sometimes while providing a picnic lunch to his listeners. He attended parties and drank wine. He chose as one of his first missionaries a woman who'd been married multiple times and was living in sin. He loved and accepted everyone.
And when he died and came back, he showed everyone that you receive a physical body after death, one that can be touched and hugged. He could still eat food in his new body; one of the first things he did when he returned in his new body was to have breakfast with his friends. But his new body could also overcome the laws of physics and pass through time and space and locked doors. Wow. And when he left he didn't even leave us with a lot of rules, just asked us to love him and to love each other, even when loving wasn't easy. And if we failed at even that, he would still forgive and accept us.
I followed that Jesus until I'd been in an abusive marriage for 7 years and decided I couldn't keep turning the other cheek, I couldn't love my enemies. I left Jesus when I left the marriage in my early 20s. I still believed, I just didn't think I had what it took to be a follower.
And I stayed away. Until 2001. Until cancer. Until I met an enemy I was totally powerless against, until I needed help bigger than I could find in this world. But it was still a long and difficult road back. Full of questions and challenges and even anger.
I now have a great faith and a great trust in God. I am sure of His presence in my life. I am not a religious fanatic, I'm actually not very "religious" at all. I attend an organized church, though kind of sporadically. I wear blue jeans to church and my church has a band with drums and the minister preaches in khakis. My best church, though, where I really connect with my God, is in the wilderness among trees and birds. Where the Monarchs butterflies are, where spring wild flowers bloom, where acorns become great oak trees. I also feel that connection when I play music.
I am sorry for the way Christianity is often portrayed by Christians today. I am reading a book "Unchristian", I truly love it. I think every Christian should read it. It talks about what the Christian faith as portrayed in America looks like to many outsiders.....our image is not a good one. It talks about people like myself, who are afraid we'll alienate others when we identify our faith. My church now hesitates to use the word "Christian" to describe us as the word has come to portray such a negative image to so many. My church is trying instead to use the term "Christ followers" to refer to us. And to remind us just what a Christ follower does....just loves other people, all people, first and foremost, to the best of our ability. It is what motivated me to construct my web site and to start this blog and to try to help others with cancer.
dreams
I have recurring dreams.
And while I don't remember all of my dreams, there are some that stay with me very vividly. I don't believe that all of my dreams have great meaning (and some make so little sense when I wake up that I don't even try to ascribe meaning to them) but sometimes, I really feel that my dreams relay messages from my sub-conscious.
I still occasionally have a dream that I am back in university. It's time to write exams, only I haven't been to class (OK some of this did actually happen in real life). In fact, I had no idea that I had even signed up for that particular course.
It's very stressful.
In a recent version of the dream (and I have had this one more than once), I have had to quit my job and go live with my parents, since I have just found out that I did not complete high school. In this dream, I can't even find the school office to get a copy of the class schedule. As the end of the school year approaches and exams loom, I realize that I have not attended a single math class (I don't even know where the classroom is).
At the most stressful periods of my working life, I found myself back in grade school (it is not fun being the only adult in Grade 4).
When I was pregnant with my first child, I dreamed that I gave birth to a chicken. I was horrified. I knew that I was supposed to love that chicken and I was wracked with guilt that, instead, I was repulsed by it. I was especially terrified at the prospect of breast-feeding the chicken.
Several months later, I dreamed that I gave birth to a golden retriever. I took that as a sign that I was making progress in my mental preparation for motherhood. I still didn't know how I would breastfeed a puppy but at least the creature in the crib was mammalian (and the thought of cuddling with it did not freak me out. I have never really liked birds).
In the year before my cancer diagnosis (my last year of working crazy hours), I dreamed that I had inherited a house. After living in it for some time, I would always discover that the house had another floor to it, one I had not known existed. This attic didn't always look the same but it was always beautifully furnished, dusty and fairly vast. My feeling upon discovering it was always wonder, mixed with a lot of fear and some excitement.
I took that one to mean that there was some aspect of my past that needed exploring. Perhaps I was also telling myself that I was neglecting some part of who I was.
More recently, I have been having a dream that is likely related to the unexplored house. In this one, I am staying at a large hotel. It always looks different and the location and reason for travel also vary. But in every dream, I get locked out of my room and I can't find my keys (this is something that happens to me almost every time I travel. And I lose keys all the time). I spend the rest of the dream wandering the halls, trying to find the front desk or, if I succeed in getting a new key, I can no longer find my room. All the hallways and every floor look exactly the same. Or the numbers have disappeared from the doors. Or I get my key to work in a lock, only to find that door opens to an empty room (or one with someone else in it. I have had this happen in real life, except that in the dream, I am the only one who seems to be bothered).
It's not a panicky dream (like the school ones), just a frustrating one. Perhaps I am just feeling stuck and not sure how to get to where I want to go (and unsure of what the destination should be).
I think dreams can tell us a great deal about ourselves, if we can actually figure them out.
Thoughts? Feel free to psychoanalyze me or share dreams of your own in the commments.
A version of this was cross-posted to Mommybloggers.
And while I don't remember all of my dreams, there are some that stay with me very vividly. I don't believe that all of my dreams have great meaning (and some make so little sense when I wake up that I don't even try to ascribe meaning to them) but sometimes, I really feel that my dreams relay messages from my sub-conscious.
I still occasionally have a dream that I am back in university. It's time to write exams, only I haven't been to class (OK some of this did actually happen in real life). In fact, I had no idea that I had even signed up for that particular course.
It's very stressful.
In a recent version of the dream (and I have had this one more than once), I have had to quit my job and go live with my parents, since I have just found out that I did not complete high school. In this dream, I can't even find the school office to get a copy of the class schedule. As the end of the school year approaches and exams loom, I realize that I have not attended a single math class (I don't even know where the classroom is).
At the most stressful periods of my working life, I found myself back in grade school (it is not fun being the only adult in Grade 4).
When I was pregnant with my first child, I dreamed that I gave birth to a chicken. I was horrified. I knew that I was supposed to love that chicken and I was wracked with guilt that, instead, I was repulsed by it. I was especially terrified at the prospect of breast-feeding the chicken.
Several months later, I dreamed that I gave birth to a golden retriever. I took that as a sign that I was making progress in my mental preparation for motherhood. I still didn't know how I would breastfeed a puppy but at least the creature in the crib was mammalian (and the thought of cuddling with it did not freak me out. I have never really liked birds).
In the year before my cancer diagnosis (my last year of working crazy hours), I dreamed that I had inherited a house. After living in it for some time, I would always discover that the house had another floor to it, one I had not known existed. This attic didn't always look the same but it was always beautifully furnished, dusty and fairly vast. My feeling upon discovering it was always wonder, mixed with a lot of fear and some excitement.
I took that one to mean that there was some aspect of my past that needed exploring. Perhaps I was also telling myself that I was neglecting some part of who I was.
More recently, I have been having a dream that is likely related to the unexplored house. In this one, I am staying at a large hotel. It always looks different and the location and reason for travel also vary. But in every dream, I get locked out of my room and I can't find my keys (this is something that happens to me almost every time I travel. And I lose keys all the time). I spend the rest of the dream wandering the halls, trying to find the front desk or, if I succeed in getting a new key, I can no longer find my room. All the hallways and every floor look exactly the same. Or the numbers have disappeared from the doors. Or I get my key to work in a lock, only to find that door opens to an empty room (or one with someone else in it. I have had this happen in real life, except that in the dream, I am the only one who seems to be bothered).
It's not a panicky dream (like the school ones), just a frustrating one. Perhaps I am just feeling stuck and not sure how to get to where I want to go (and unsure of what the destination should be).
I think dreams can tell us a great deal about ourselves, if we can actually figure them out.
Thoughts? Feel free to psychoanalyze me or share dreams of your own in the commments.
A version of this was cross-posted to Mommybloggers.
Monday, March 17, 2008
Krakow Ghetto--Terrorists
Today's Tribune had a story about the 65th anniversary of the liquidation of the Krakow ghetto. Of course Schindler was brought into it, and why not? He did save Jews; just because something was in a movie doesn't mean it isn't true. After the ghetto was emptied out, some of the Jewish partisans were able to escape into the Wisnicz Forest, and they continued fighting until the autumn of 1943.
The Tribune (via wire service) does not tell us about the partisans because Spielberg did not make a movie about them. And they did not have the power of a German industrialist to save lives by providing work that helped the Nazi war effort. The Jewish fighters were, in effect, terrorists. In Poland's Ghettos At War, a book that's sympathetic to the Jewish Underground fighters, author Alfred Katz writes of the "campaign of terror" in 1942 and 1943 in Krakow, in which fighters killed Gestapo agents, and "liquidat[ed several German employees." Later they attacked a railroad station, killing dozens of Germans. In reprisal, the Germans killed 22 Jews.
I say it this way even though if I hope I would have had the courage to fight with the Jewish Underground. In the early 1980s I was a pacifist but I changed my mind (starting from the moment I read about Jewish self-defense against pogroms). Everyone who fights has a rationale. And everyone who kills can be judged. Are all murders equal? No. I'm sure the Nazis would have claimed self-defense, against the Jewish-Bolshevik scourge about to take over the world.
The Tribune (via wire service) does not tell us about the partisans because Spielberg did not make a movie about them. And they did not have the power of a German industrialist to save lives by providing work that helped the Nazi war effort. The Jewish fighters were, in effect, terrorists. In Poland's Ghettos At War, a book that's sympathetic to the Jewish Underground fighters, author Alfred Katz writes of the "campaign of terror" in 1942 and 1943 in Krakow, in which fighters killed Gestapo agents, and "liquidat[ed several German employees." Later they attacked a railroad station, killing dozens of Germans. In reprisal, the Germans killed 22 Jews.
I say it this way even though if I hope I would have had the courage to fight with the Jewish Underground. In the early 1980s I was a pacifist but I changed my mind (starting from the moment I read about Jewish self-defense against pogroms). Everyone who fights has a rationale. And everyone who kills can be judged. Are all murders equal? No. I'm sure the Nazis would have claimed self-defense, against the Jewish-Bolshevik scourge about to take over the world.
One of the people killed in Krakow was Mordechai Gebirtig, a famous poet and songwriter, was murdered in Krakow in 1942. His most famous song is Es Brent, It's burning, written in 1938 about a pogrom in Przytk, Poland. The song became like an anthem for the Jewish Underground.
The Living Breast
Today I heard of this for the first time: The Living Breast. There's a local artist who paints breasts. Doesn't paint pictures of breasts. Paints pictures on breasts. And on chests where breasts used to be. Then a photographer snaps them and they turn them into greeting cards. Money going, naturally, for breast cancer research, in fact, a "significant percentage of your purchase is donated to breast cancer research and advocacy." I don't know what that means.
The painted breasts and chests are quite beautiful, with bright swirls and stripes and flowers and a branch. It's a shame that the models can't show themselves off in public. Covering yourself with paint isn't the same as wearing clothes.
I don't know how I feel about these images. Painting over the scarred skin makes it beautiful. Painting over the unblemished breast makes it beautiful, too. What is it when the paint wears off? I suppose the artist is showing the women, and the public, that post-surgery bodies can be beautiful. Do I think my own puckered scars are beautiful? No. But they don't bother me. I'm generally skeptical about projects like this. I'm not sure why. I felt the skepticism in me as soon as I opened the web page. Because it's an idea that can't be good because I didn't think of it first? Because I don't know where the artist stands on cure vs. prevention? Because the bodies are merely canvases? I don't know.
The painted breasts and chests are quite beautiful, with bright swirls and stripes and flowers and a branch. It's a shame that the models can't show themselves off in public. Covering yourself with paint isn't the same as wearing clothes.
I don't know how I feel about these images. Painting over the scarred skin makes it beautiful. Painting over the unblemished breast makes it beautiful, too. What is it when the paint wears off? I suppose the artist is showing the women, and the public, that post-surgery bodies can be beautiful. Do I think my own puckered scars are beautiful? No. But they don't bother me. I'm generally skeptical about projects like this. I'm not sure why. I felt the skepticism in me as soon as I opened the web page. Because it's an idea that can't be good because I didn't think of it first? Because I don't know where the artist stands on cure vs. prevention? Because the bodies are merely canvases? I don't know.
a change is as good as a rest
And a rest is as good as a rest, too.
S. and I had a great time in Toronto. I really didn't do a lot of parenting, as S. and Grandma were pretty much inseparable. They saw a lot of movies, ate food that we can't keep in the house (nuts, peanuts and sesame, due to D.'s allergies) and just generally enjoyed each other's company.
S. also discovered bitstrips. How could a kid who loves comics and the internet resist?
And, as his proud Mama, I have to crow that he created comic strip embedded above, all by himself (yes, I swear he really is nine). "Susan" is a nom de plume (or rather the name of the adult whose account he was using).
And as for me, I slept a fair bit, did a bit (a very little bit after the first couple of days) of writing and spent time with really good friends.
I also did lots of walking. On Saturday, I walked the length of Queen Street from Coxwell to Crawford (and then up, almost to Bloor), about 10km (more than 6 miles). It was a really fun way to see a real cross-section of Toronto life.
I played tourist, too.
If you're ever in Toronto, you really should check out the following:
- go here, if you are a knitter
- eat here, if you like good, cheap food and a really relaxed atmosphere
- hang out here, if you like to take in a bit of history, enjoy artists studios or just like to drink locally brewed beer
- get take out from here if you like Caribbean food (you can't get good roti in Ottawa).
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