Pete's parents, Betsy and John, came into town this week. They arrived on Monday afternoon and, had my parents not taken advantage of my "bonus" good week and slipped out of town a few days prior (at Pete's and my urging!), I think that we would have held an official "Passing of the Baton" ceremony!
Ever since my diagnosis in early February, when we called our parents in tears to share the news, either my parents or my in-laws have been in-town and "on call" to help us almost every single moment. All four of them have coordinated their busy schedules seamlessly, flown countless miles, temporarily relocated their lives to a new state, and put numerous personal appointments on hold so that we would have continual coverage and help. I know that I have said this a million times, but I need to say it at least a million more: We are soooo blessed to have such wonderful family through this whole journey!!
I have wondered countless times how people survive cancer if they don't have family around to help. I know that there are women out there -- some of whom have my exact same diagnosis and are undergoing my exact same treatment -- who are not as fortunate as me. For whatever reason, they don't have family nearby to care for their children or to help with the multitude of chores that just accompany everyday life (like laundry, cooking or grocery shopping.) I am sure that in situations like this, friends willingly jump in to fill some of these roles -- and we have been blessed in this regard as well -- but, it's hard to lean on friends the same way that you lean on family.
Most of our close friends have families of their own to care for and so would be less able to come over every morning at 7am to help with the morning chaos, or to sit with me at an appointment that lasts 2 hours rather than the expected 30 minutes, or to help Luke with his homework every afternoon so that I can rest, or to take Kyle to their house to spend the night on a moment's notice. These are all things -- and much, much more! -- that my parents and my in-laws have done day after day.
When I took Kyle in for his two year check up, our pediatrician admitted that she would not have been surprised for Luke and Kyle to have regressed a bit during this time, given all that we have been through. But, in fact, the opposite has happened: our kids have flourished!! Kyle was barely speaking in February and now he is putting complex sentences together! And the kid is seriously destined for a major sports career -- he can drop kick a ball clear across the room and throws a wickedly accurate fast ball! Luke has obviously been much more aware of what is going on, but seems almost completely unaffected by it all. He eased into 1st grade without a hitch and is now mastering reading and fairly advanced math like a champ. He is the proud grower of 5 tomato plants and he continues to be a wonder-kid with regards to athletics, switching effortlessly between soccer, tennis, golf, and advanced bouncing-off-the-wall. Most importantly, though, is that both of our children seem to spend the better part of each day happy and laughing, for which we can only thank my parents, my in-laws and our wonderful nanny, Anne (who I now feel is like a sister to me!)
In my early entry "My Mountain," I wrote about "two breathtakingly beautiful angels [who] will swing down to me in their harnesses and ropes to help me smile and to give me strength and hope as I climb." And this is exactly what has happened. Because of the wonderful care and love that my children have received, I have been able to focus so much energy on healing my body. And Pete, who is my climbing partner extrordinaire, has been able to stay focused on "securing my ropes." And together as a family (me, Pete, the boys, our parents and Anne), we have slowly, day-by-day worked together to overcome this incredible obstacle that confronted us and we have all grown closer as a result.
My mom has told me numerous times that I don't need to thank them -- this is what families do, she says. There is nothing more important in their life than helping me to heal, she tells me. And I know in my heart that this is true. But in thinking back on the past 8 months, I also know that there is no way that I could ever climb this mountain alone -- it is just too damn hard! And I feel so much sorrow in my heart for people who have no choice. This mountain has consumed many a climber, I know, and I have to believe that many of the climbers who never make it to the top are the ones climbing alone. Having a wonderful family is truly a blessing and I wish that there was some way that I could show everyone how much their love and support means to me, but I think that the best "thank you" that I can give is just to heal. I think that would be the greatest gift of all and so I hope and pray that this is a gift that I can give.
Sunday, September 16, 2007
Checking In
Yes, I am still here and still very much alive, despite the many days and nights of complete silence!! I just haven't had the energy this week to write anything, that's all. Unfortunately, not having the energy to write hasn't stop my mind from thinking of a million things to write ABOUT this week, and so now I have a virtual bottleneck going on in my head!
So where to begin?? I'll start by saying that I am finally on the "upswing" from this last cycle, and THANK GOD for that! It was a really hard week for many of the same old reasons, but, in addition, I am finally feeling like my body is on the verge of collapsing. I have been so incredibly tired this cycle that I told Pete that I will be shocked if my red blood count is anywhere close to normal. This is not unexpected....just like with the white blood cells and platelets (all of which are "fast dividing cells") the red blood cells take a beating every time I have chemo. The result is anemia, which is defined as "a feeling of weakness or diminished physical and mental capacity unrelieved by rest." Yep, that would be me! If I remember correctly, though, the body requires about 14 days to replenish white blood cells, but only 3-4 days to replenish red blood cells (Jeremy/Shannon -- is this correct??) and so hopefully I'll feel better in a few days. The other "verge of collapse" issue that I have had is that every morning for the past few days I have woken up feeling like I am about to get a cold (yesterday it was non-stop sneezing, today is a constant, annoying cough) but then I take my Neupogen shot and somehow, miraculously, I slip by without the symptoms progressing into a full-blown cold. Needless to say, I am counting my blessings on that front. I cannot imagine going through chemo and having a cold at the same time -- I think that would be the low of all lows. In fact, I think that would be even worse than chemo + poison oak, and believe me, that sucked!
And so, as usual, I am just taking things day by day and happy beyond belief that I am finally past my hardest days (which are turning out pretty consistently to be Thursday and Friday of my chemo weeks.) I know that every day going forward now I will just feel better and better. Well, until the next cycle anyway....But now I only have 3 more to go! Woo Hoo!!
So where to begin?? I'll start by saying that I am finally on the "upswing" from this last cycle, and THANK GOD for that! It was a really hard week for many of the same old reasons, but, in addition, I am finally feeling like my body is on the verge of collapsing. I have been so incredibly tired this cycle that I told Pete that I will be shocked if my red blood count is anywhere close to normal. This is not unexpected....just like with the white blood cells and platelets (all of which are "fast dividing cells") the red blood cells take a beating every time I have chemo. The result is anemia, which is defined as "a feeling of weakness or diminished physical and mental capacity unrelieved by rest." Yep, that would be me! If I remember correctly, though, the body requires about 14 days to replenish white blood cells, but only 3-4 days to replenish red blood cells (Jeremy/Shannon -- is this correct??) and so hopefully I'll feel better in a few days. The other "verge of collapse" issue that I have had is that every morning for the past few days I have woken up feeling like I am about to get a cold (yesterday it was non-stop sneezing, today is a constant, annoying cough) but then I take my Neupogen shot and somehow, miraculously, I slip by without the symptoms progressing into a full-blown cold. Needless to say, I am counting my blessings on that front. I cannot imagine going through chemo and having a cold at the same time -- I think that would be the low of all lows. In fact, I think that would be even worse than chemo + poison oak, and believe me, that sucked!
And so, as usual, I am just taking things day by day and happy beyond belief that I am finally past my hardest days (which are turning out pretty consistently to be Thursday and Friday of my chemo weeks.) I know that every day going forward now I will just feel better and better. Well, until the next cycle anyway....But now I only have 3 more to go! Woo Hoo!!
Tuesday, September 11, 2007
We Are All From This Earth
One of the realities of going through chemo treatment is that, within each cycle, I inevitably have two or three days when I feel so crummy that all I want to do is lay on the couch and watch mindless television. In fact, last cycle Pete came home from work to find me glued to my third hour of watching "America's Next Top Model." Ha ha!
I have never really been a TV watcher. In fact, were it not for the occasional World Cup Soccer Finals or 9/11 sort of breaking news, I think that both Pete and I could easily live without a TV in our home at all. I am always constantly perplexed when I hear that the average American spends three (or is it four?) hours a day watching TV - how can this be?? What the heck are they watching?? Or, more importantly, what other activities in their life are being re-prioritized so that they can sit in front of the TV for that many hours? Even on my grimmest days, I truly have to struggle to find anything that is worth watching, and, believe me, my standards on these days are NOT high. The one exception to this rule is Oprah. I have always love Oprah. I love her for probably the same reason that most people love her: she is about as honest and "tell it like it is" as people come.
A couple chemo cycles ago, I watched one of her shows entitled "Answers to Questions You Always Wanted to Ask." For example, one of the guests that she invited on the show talked about where our sewage actually goes after we flush and how it is treated and "reclaimed" so that it can be reused for watering landscaping, etc. Hmmm...who knew! The more interesting topic for me, though, was "What happens to all the roadkill on our highways and roads?" Okay, at this point, you are probably asking yourself whether I am beginning to lose it....What exactly is this chemo doing to my brain that I might find the topic of roadkill to be so interesting, you might wonder, but bear with me...
The guest that Oprah invited on to answer this question was some guy whose sole job is to clear the highways in New Jersey of any and all roadkill. As he explained, he wanders the highways looking for roadkill or responds to leads called in by commuters and then loads the dead animals into his truck for disposal. As the guest is speaking, there is video footage illustrating the process in quite graphic detail, including deer frozen in position by rigormortis. Once is truck is full, he drives to a huge compost pile and buries the animals, where the animal carcasses eventually decompose and become compost. The compost is then sold as fertilizer at local garden shops. At this point, the audience let out a huge collective moan of disgust and the cameras pan over the crowd to show some women covering their faces in horror. I don't know if, prior to everything I have gone through, I would have covered my face and moaned as well -- it's hard to put myself back in that mind frame. What I do know, however, is that I actually found Mr. Roadkill Collector's description of the animal compost to be quite beautiful.
Through this whole journey of mine, I have spent hours upon hours contemplating the meaning of life and the meaning of death, and one of the things that has brought me the most lasting comfort is the idea that we are all from this Earth. From the very first day of conception, our bodies are nourished and grow only by the grace of the food that we eat (or that our mother's ate), the air that we breathe and the water that we drink. And all of these things come from the Earth. We are really nothing more than trillions of cells that have figured out a way to convert these natural substances into something highly evolved and complex - nothing short of a miracle for sure! And so, when I think about the fact that we are but highly complex manifestations of air, food and water, I can't help but find comfort in the fact that someday my body -- this vessel of mine which temporarily carries around my soul -- will someday return to the Earth.
After watching this show, I told Pete that I want to be cremated when I die. I can't bear the thought that some poor tree would be cut down in order to be turned into a coffin to hold my remains. And I can't bear the thought of my body being filled with formaldehyde in order to preserve some semblance of "normalcy" while I am buried 6 feet underground. I want my body to be returned to the Earth from which it came, in the most natural and chemical-free state possible. I find comfort in the thought that my ashes might blow temporarily in the wind only to eventually settle on the ground and begin nourishing some living being and bringing forth more life. I find comfort in the thought that this body of mine, which I take such meticulous care of now, might help beautiful wildflowers grow in my "healing place" near Tennessee Valley Beach, and I think of my children and other loved ones visiting this place and seeing it brimming with life and knowing that I am there for eternity, and that the material that once comprised my living being is continuing on in the cycle of life. We are all going to die someday (hopefully, my day is still another 60 years from now!) but somehow the thought of dying becomes more bearable when framed this way.
And so there you have it: life's most important inspirations can come from anywhere, even a discussion about roadkill on Oprah!
I have never really been a TV watcher. In fact, were it not for the occasional World Cup Soccer Finals or 9/11 sort of breaking news, I think that both Pete and I could easily live without a TV in our home at all. I am always constantly perplexed when I hear that the average American spends three (or is it four?) hours a day watching TV - how can this be?? What the heck are they watching?? Or, more importantly, what other activities in their life are being re-prioritized so that they can sit in front of the TV for that many hours? Even on my grimmest days, I truly have to struggle to find anything that is worth watching, and, believe me, my standards on these days are NOT high. The one exception to this rule is Oprah. I have always love Oprah. I love her for probably the same reason that most people love her: she is about as honest and "tell it like it is" as people come.
A couple chemo cycles ago, I watched one of her shows entitled "Answers to Questions You Always Wanted to Ask." For example, one of the guests that she invited on the show talked about where our sewage actually goes after we flush and how it is treated and "reclaimed" so that it can be reused for watering landscaping, etc. Hmmm...who knew! The more interesting topic for me, though, was "What happens to all the roadkill on our highways and roads?" Okay, at this point, you are probably asking yourself whether I am beginning to lose it....What exactly is this chemo doing to my brain that I might find the topic of roadkill to be so interesting, you might wonder, but bear with me...
The guest that Oprah invited on to answer this question was some guy whose sole job is to clear the highways in New Jersey of any and all roadkill. As he explained, he wanders the highways looking for roadkill or responds to leads called in by commuters and then loads the dead animals into his truck for disposal. As the guest is speaking, there is video footage illustrating the process in quite graphic detail, including deer frozen in position by rigormortis. Once is truck is full, he drives to a huge compost pile and buries the animals, where the animal carcasses eventually decompose and become compost. The compost is then sold as fertilizer at local garden shops. At this point, the audience let out a huge collective moan of disgust and the cameras pan over the crowd to show some women covering their faces in horror. I don't know if, prior to everything I have gone through, I would have covered my face and moaned as well -- it's hard to put myself back in that mind frame. What I do know, however, is that I actually found Mr. Roadkill Collector's description of the animal compost to be quite beautiful.
Through this whole journey of mine, I have spent hours upon hours contemplating the meaning of life and the meaning of death, and one of the things that has brought me the most lasting comfort is the idea that we are all from this Earth. From the very first day of conception, our bodies are nourished and grow only by the grace of the food that we eat (or that our mother's ate), the air that we breathe and the water that we drink. And all of these things come from the Earth. We are really nothing more than trillions of cells that have figured out a way to convert these natural substances into something highly evolved and complex - nothing short of a miracle for sure! And so, when I think about the fact that we are but highly complex manifestations of air, food and water, I can't help but find comfort in the fact that someday my body -- this vessel of mine which temporarily carries around my soul -- will someday return to the Earth.
After watching this show, I told Pete that I want to be cremated when I die. I can't bear the thought that some poor tree would be cut down in order to be turned into a coffin to hold my remains. And I can't bear the thought of my body being filled with formaldehyde in order to preserve some semblance of "normalcy" while I am buried 6 feet underground. I want my body to be returned to the Earth from which it came, in the most natural and chemical-free state possible. I find comfort in the thought that my ashes might blow temporarily in the wind only to eventually settle on the ground and begin nourishing some living being and bringing forth more life. I find comfort in the thought that this body of mine, which I take such meticulous care of now, might help beautiful wildflowers grow in my "healing place" near Tennessee Valley Beach, and I think of my children and other loved ones visiting this place and seeing it brimming with life and knowing that I am there for eternity, and that the material that once comprised my living being is continuing on in the cycle of life. We are all going to die someday (hopefully, my day is still another 60 years from now!) but somehow the thought of dying becomes more bearable when framed this way.
And so there you have it: life's most important inspirations can come from anywhere, even a discussion about roadkill on Oprah!
Monday, September 10, 2007
"Mo Lub Ewes"
I have a very cute game that I play with both of my kids. It starts by me saying "Guess what?!" with a very mischievious look in my eye. Luke or Kyle then say "What Mommy? What?" at which point I yell "I loooooove you!" while smothering their little bodies with kisses.
Yesterday, I played this game with Kyle and he was so darn cute!!! After we had played the game four or five times, I told him that it was time to stop and get dressed for the day (he was wearing only a diaper and there is nothing better kissing a naked baby belly!)
In response, though, Kyle emphatically demanded "No Mommy! NOOOOOO!! Mo lub ewes!" For those who have never been exposed to Kyle's adorable little two-year-old language, this sentence translates into "More love you's!" How could I possibly deny the little guy when he is so darn cute?? Trust me, it's impossible! So needless to say, we continued playing "I Lub Ewes" for another half hour.
Of course, our morning schedule and "To Do" list were thrown off a bit by this unexpected turn of events, but it was a lazy Sunday morning and I decided that there was really nothing more important that I needed to be doing other than telling my child how much I love him. It's truly amazing how effective young children are at keeping you living in the moment!!
Yesterday, I played this game with Kyle and he was so darn cute!!! After we had played the game four or five times, I told him that it was time to stop and get dressed for the day (he was wearing only a diaper and there is nothing better kissing a naked baby belly!)
In response, though, Kyle emphatically demanded "No Mommy! NOOOOOO!! Mo lub ewes!" For those who have never been exposed to Kyle's adorable little two-year-old language, this sentence translates into "More love you's!" How could I possibly deny the little guy when he is so darn cute?? Trust me, it's impossible! So needless to say, we continued playing "I Lub Ewes" for another half hour.
Of course, our morning schedule and "To Do" list were thrown off a bit by this unexpected turn of events, but it was a lazy Sunday morning and I decided that there was really nothing more important that I needed to be doing other than telling my child how much I love him. It's truly amazing how effective young children are at keeping you living in the moment!!
Another Life Saved
I spoke with another friend of Pete's and mine this weekend about screening for colon cancer. Both she and her husband were prompted to get themselves screened based both on my experience and on the fact that one of their children was having some digestive issues that required attention (and so they wanted to ensure that there was nothing genetic going on.)
And it's a really, really great thing that they were so proactive! My friend got a clean bill of health, but her husband had FOUR pre-cancerous polyps removed! He is also 39 years old -- a solid 11 years away from the age when most insurance will cover colonoscopies.
I think that, rather than having a traffic counter on my blog, I need to figure out a way to keep track of all my wonderful friends and family who are getting themselves screened for colon cancer, since these are the statistics that would make me really, really happy! :)
And it's a really, really great thing that they were so proactive! My friend got a clean bill of health, but her husband had FOUR pre-cancerous polyps removed! He is also 39 years old -- a solid 11 years away from the age when most insurance will cover colonoscopies.
I think that, rather than having a traffic counter on my blog, I need to figure out a way to keep track of all my wonderful friends and family who are getting themselves screened for colon cancer, since these are the statistics that would make me really, really happy! :)
Without A Hitch
My chemo treatment today went off without a hitch. My blood tests showed that the extra week of healing did the trick: my white count rose slightly to 2.9 (which is still low, so more Neupogen shots needed this week, but acceptable from a chemo perspective) and my platelets rose to 111 (last Tuesday they were only at 66 and the minimum for treatment is 75.) I still have lots of random bruises all over my body and a few other mild symptoms -- for example, my tastebuds are starting to get pretty numb and so I have trouble tasting most foods and I feel really weak on some days. But so far, I am still hanging in there.
And so, with very mixed emotions, I did another treatment of FOLFOX today. I say "mixed emotions" since I would have obviously loved to have been just about anywhere else other than sitting in the "chemo lounge" at the Marin Cancer Center, but since there is no way to avoid what I have to go through, I figure the sooner I get going, the sooner I'll be done!
And so, with very mixed emotions, I did another treatment of FOLFOX today. I say "mixed emotions" since I would have obviously loved to have been just about anywhere else other than sitting in the "chemo lounge" at the Marin Cancer Center, but since there is no way to avoid what I have to go through, I figure the sooner I get going, the sooner I'll be done!
Tuesday, September 4, 2007
Screening for Colon Cancer
Since I was diagnosed with colon cancer in February, I have had three friends who were inspired (or panicked??) by my experience to reach out to their doctors and schedule a colonscopy for themselves. For two of the women, colon cancer ran in their families, which is what made them take action. And the third friend was having digestive issues which concerned her. All three are women my age, all have young children at home, and all three are very physically active. None of them -- like me -- fit the profile of what most doctors would expect for colon cancer.
And yet, two of them wrote and told me that their doctors found and removed polyps during the colonoscopy (luckily, the third friend got a clean bill of health and peace of mind!) And as you may remember from one of my earlier postings, polyps are often a precursor to colon cancer. Removing the polyp removes the cancer (or pre-cancer) completely and this is why colon cancer -- if caught early enough -- is very treatable and very curable. The trick, though, is to catch it early -- hence, scheduling yourself in for a screening colonoscopy before you even have symptoms.
My one friend wrote to thank me for "saving her life." She said that her doctor initially did not want to approve her having a colonoscopy at her age and wanted her to wait until the recommended age of 50, but because of me and because of her family history of colon cancer, she persisted until he finally gave in. As it turns out, she had three polyps removed and, if she had followed her doctor's advice, I have to believe that she probably would not have lived to see the age of 50!!
In the course of my treatment, I have also learned of another incredibly sad story. A woman who was a classmate of mine at Kellogg was diagnosed a few months ago with stage 4 colon cancer. Her cancer has spread to her lungs -- ironically, she was having chest x-rays done in order to figure out why she had a persistent cough when they discovered the cancer in her lungs and traced it back to colon cancer. She is also roughly my age with a young child at home. From what I have heard through mutual friends, she also had a family history of colon cancer and yet her doctors mis-diagnosed her digestive symptoms for the past two years as simply "irritable bowel syndrome." And now, it sounds as though her cancer has progressed to the point of being uncurable.
I could go on and on...Through this whole ordeal I have met a number of other women -- all of whom are also roughly my age -- who are battling either stage 3 or stage 4 colon cancer. You'd think that I would be somehow reassured by these other women; that it would be a comfort to me that I am not the only one going through this, but the reality is that I find it horrifying!! How is it that so many young women -- who clearly do not fit the typical profile for colon cancer -- are being diagnosed with this dreadful disease?!? How can it be that so many of us go mis-diagnosed for so long? Why is this happening?!?
I was asked recently to help the American Cancer Society in my area with a marketing campaign that they are undertaking: they are hoping to increase the screening rates for colon cancer with doctors in our area and want help in coming up with the strategy and execution of the marketing plan. "Sign me up!" I said, "I would LOVE to help!" I cannot think of a better way to use all of the years of marketing experience that I have accumulated than to help ensure that other people -- especially young women!! -- receive the screening necessary to prevent this awful disease. I'll keep you posted on how the plan unfolds, but I can already tell you the main message: Get Yourself Screened for Colon Cancer Now!!
And yet, two of them wrote and told me that their doctors found and removed polyps during the colonoscopy (luckily, the third friend got a clean bill of health and peace of mind!) And as you may remember from one of my earlier postings, polyps are often a precursor to colon cancer. Removing the polyp removes the cancer (or pre-cancer) completely and this is why colon cancer -- if caught early enough -- is very treatable and very curable. The trick, though, is to catch it early -- hence, scheduling yourself in for a screening colonoscopy before you even have symptoms.
My one friend wrote to thank me for "saving her life." She said that her doctor initially did not want to approve her having a colonoscopy at her age and wanted her to wait until the recommended age of 50, but because of me and because of her family history of colon cancer, she persisted until he finally gave in. As it turns out, she had three polyps removed and, if she had followed her doctor's advice, I have to believe that she probably would not have lived to see the age of 50!!
In the course of my treatment, I have also learned of another incredibly sad story. A woman who was a classmate of mine at Kellogg was diagnosed a few months ago with stage 4 colon cancer. Her cancer has spread to her lungs -- ironically, she was having chest x-rays done in order to figure out why she had a persistent cough when they discovered the cancer in her lungs and traced it back to colon cancer. She is also roughly my age with a young child at home. From what I have heard through mutual friends, she also had a family history of colon cancer and yet her doctors mis-diagnosed her digestive symptoms for the past two years as simply "irritable bowel syndrome." And now, it sounds as though her cancer has progressed to the point of being uncurable.
I could go on and on...Through this whole ordeal I have met a number of other women -- all of whom are also roughly my age -- who are battling either stage 3 or stage 4 colon cancer. You'd think that I would be somehow reassured by these other women; that it would be a comfort to me that I am not the only one going through this, but the reality is that I find it horrifying!! How is it that so many young women -- who clearly do not fit the typical profile for colon cancer -- are being diagnosed with this dreadful disease?!? How can it be that so many of us go mis-diagnosed for so long? Why is this happening?!?
I was asked recently to help the American Cancer Society in my area with a marketing campaign that they are undertaking: they are hoping to increase the screening rates for colon cancer with doctors in our area and want help in coming up with the strategy and execution of the marketing plan. "Sign me up!" I said, "I would LOVE to help!" I cannot think of a better way to use all of the years of marketing experience that I have accumulated than to help ensure that other people -- especially young women!! -- receive the screening necessary to prevent this awful disease. I'll keep you posted on how the plan unfolds, but I can already tell you the main message: Get Yourself Screened for Colon Cancer Now!!
Chemo Cycle Delayed
Everyone keeps telling me how great I look despite all of my treatments, but looks are deceiving! I might still look pretty normal on the outside, but apparently, my insides are taking quite a beating.....
I was supposed to have my fifth chemo cycle this morning, but unfortunately, it got delayed because my platelet count dropped too low -- it's only 66 and Dr Gullion said that it needs to be at least 75 in order to proceed (I'm not sure what "75" or "66" mean exactly, but I do remember that when I started this whole adventure my count was somewhere in the 200's) So he sent me home to rest and recuperate for another week and I'll go back in next Monday for treatment #5, assuming that my platelets recover.
The good news is that my white blood count did rebound a bit. Apparently, the Neupogen shots did the trick! If you remember, my WBC had dropped to 1.0 last week (1.5 is the low end of what's acceptable) but this week it was up to 2.3. Woo Hoo!! Go E-coli!! This was particularly great news seeing as Kyle has his first cold of the season. Poor little guy had a fever of 101.5 last night! Needless to say, I am trying my best to steer clear, but it's heartbreaking to be a mom with a sick kid and not be able to give the little guy a big huge hug!
So now I am at a bit of a loss as to what to do with myself this week -- I was all geared up for this to be a "hell" week and now I have another week off. Hmmm...not a bad dilemma to have, eh? Actually, on the one hand, I am thrilled, since this obviously means another week of feeling good, but on the other hand I am sad to be thrown off course. I had my mind set on October 15th as being my last day of treatment -- it was really helpful for me to have that date as a "mental anchor" -- and that's obviously no longer the case. Plus, Pete and I had foolishly planned a number of fun weekend adventures around my chemo schedule and now our plans are all messed up.
But it is what it is. There is nothing that I can do about it. And I trust that Dr Gullion is making all the right decisions to get me through this whole experience in one piece, which is the most important thing in the end.
I was supposed to have my fifth chemo cycle this morning, but unfortunately, it got delayed because my platelet count dropped too low -- it's only 66 and Dr Gullion said that it needs to be at least 75 in order to proceed (I'm not sure what "75" or "66" mean exactly, but I do remember that when I started this whole adventure my count was somewhere in the 200's) So he sent me home to rest and recuperate for another week and I'll go back in next Monday for treatment #5, assuming that my platelets recover.
The good news is that my white blood count did rebound a bit. Apparently, the Neupogen shots did the trick! If you remember, my WBC had dropped to 1.0 last week (1.5 is the low end of what's acceptable) but this week it was up to 2.3. Woo Hoo!! Go E-coli!! This was particularly great news seeing as Kyle has his first cold of the season. Poor little guy had a fever of 101.5 last night! Needless to say, I am trying my best to steer clear, but it's heartbreaking to be a mom with a sick kid and not be able to give the little guy a big huge hug!
So now I am at a bit of a loss as to what to do with myself this week -- I was all geared up for this to be a "hell" week and now I have another week off. Hmmm...not a bad dilemma to have, eh? Actually, on the one hand, I am thrilled, since this obviously means another week of feeling good, but on the other hand I am sad to be thrown off course. I had my mind set on October 15th as being my last day of treatment -- it was really helpful for me to have that date as a "mental anchor" -- and that's obviously no longer the case. Plus, Pete and I had foolishly planned a number of fun weekend adventures around my chemo schedule and now our plans are all messed up.
But it is what it is. There is nothing that I can do about it. And I trust that Dr Gullion is making all the right decisions to get me through this whole experience in one piece, which is the most important thing in the end.
Justification for Wine
A good friend sent this to me and I had to laugh....
As Ben Franklin said: In wine there is wisdom, in beer there is freedom, in water there is bacteria. In a number of carefully controlled trials, scientists have demonstrated that if we drink 1 liter of water each day, at the end of the year we would have absorbed more than 1 kilo of Escherichia coli, (E. coli) - bacteria found in feces. In other words, we are consuming 1 kilo of poop.
However, we do NOT run that risk when drinking wine and beer (or tequila, rum, whiskey or other liquor) because alcohol has to go through a purification process of boiling, filtering and/or fermenting.
Remember: Water = Poop, Wine = Health
Therefore, it's better to drink wine and talk stupid, than to drink water and be full of shit.
As Ben Franklin said: In wine there is wisdom, in beer there is freedom, in water there is bacteria. In a number of carefully controlled trials, scientists have demonstrated that if we drink 1 liter of water each day, at the end of the year we would have absorbed more than 1 kilo of Escherichia coli, (E. coli) - bacteria found in feces. In other words, we are consuming 1 kilo of poop.
However, we do NOT run that risk when drinking wine and beer (or tequila, rum, whiskey or other liquor) because alcohol has to go through a purification process of boiling, filtering and/or fermenting.
Remember: Water = Poop, Wine = Health
Therefore, it's better to drink wine and talk stupid, than to drink water and be full of shit.
Friday, August 31, 2007
To Make Matters Worse...
Okay, so if going through chemo were not bad enough, I am now beginning to break out in little poison oak patches all over my body (worst place is on my lower eyelids!) Ugh!! Ugh!! Triple ugh!!
Poison oak is rampant in our area and so it's fairly hard to avoid, but I have no idea how I got this -- it's not like I have been out taking adventurous hikes lately. I am guessing that my dog or my kids tracked it in somehow. All I know is that the last time I had a major poison oak episode was when I was in the hospital (I had a huge patch on my leg) and I have to say that poison oak is really pretty manageable when you are on a continuous morphine drip! Ha Ha! Unfortunately, that is not the case this time, so off I go to bed with itches all over my body.
Poison oak is rampant in our area and so it's fairly hard to avoid, but I have no idea how I got this -- it's not like I have been out taking adventurous hikes lately. I am guessing that my dog or my kids tracked it in somehow. All I know is that the last time I had a major poison oak episode was when I was in the hospital (I had a huge patch on my leg) and I have to say that poison oak is really pretty manageable when you are on a continuous morphine drip! Ha Ha! Unfortunately, that is not the case this time, so off I go to bed with itches all over my body.
Friday, August 24, 2007
Yummy Blackberries
Ohhh, I am so happy!! From the article below, it sounds like all those times in the past few weeks that I felt well enough to go out into our backyard and pick blackberries with my kids were as good for my body as they were for my soul! Read on....
In the News: Berries Fight Cancer
By Brad Lemley
Life offers relatively few unambiguous win-win situations, but here’s one: berries, those sweet, natural treats that almost everyone loves may provide potent anticancer compounds.
That’s the conclusion of Christine Sardo, who manages clinical trials on berry consumption and cancer prevention for Ohio State University’s College of Medicine. “We are promoting the concept of ‘fruitraceuticals’ as opposed to pharmaceuticals for cancer, and emphasizing prevention vs. treatment,” she told about 300 health practitioners at the Nutrition and Health Conference in New York City in May. The annual conference, sponsored by Columbia University’s College of Physicians and Surgeons and the University of Arizona’s School of Medicine, brings together the world’s leading nutrition scientists to discuss their latest findings.
Sardo’s revelation was among the conference highlights. She detailed a study published in the March 1, 2006, issue of Cancer Research, in which OSU Public Health professor Gary Stoner and four co-authors fed rats the cancer-causing chemical N-nitrosomethylbenzylamine three times a week for five weeks. After 20 additional weeks, rats that ate a diet consisting of ten percent black raspberries showed reductions in oral, esophageal and colon cancers of about 50 percent compared to rats that did not eat berries. “The berries prevented the entire spectrum of tumors from being initiated and promoted,” Sardo said.
The idea of berries as anticarcinogens began in the late 1980s, when Stoner discovered that ellagic acid, found in many fruits and vegetables, inhibited the genesis of tumors. He then found that berries contained high amounts of ellagic acid, and that black raspberries in particular had more of this compound than all of the other berries he surveyed.
Berries, said Sardo, may be natural counterparts of synthetic drugs such as Tamoxifen. “Studies show Tamoxifen can reduce the risk of breast cancer, but the studies have not evolved to look at the chemopreventive action of foods in our diet, of the things we eat everyday.” That’s a mistake, she said, because it may be that a combination of compounds, such as those found in foods, could be more effective than a single agent. Indeed, there are other constituents in berries that can also prevent cancer, said Sardo, including calcium, folic acid, fiber and various phytochemicals.
Acting together, Sardo said, the compounds in black raspberries slow the growth rate of pre-malignant cancerous cells, and they stimulate those cells to die, a process called apitosis.
The next step is human trials, which Sardo is currently conducting. She is focusing on people with pre-cancerous lesions of the esophagus, mouth and colon, as these are the places where the compounds in black raspberries can be absorbed best. She feeds her human subjects about two ounces of freeze-dried black raspberries daily, the equivalent of about a pound of fresh black raspberries.
While her patients think they are simply eating tasty, freeze-dried-berry slurry, “what we are really doing is feeding them a whopping dose of anthocyanins, phenolic acids, vitamins and minerals three time a day.”
It is too soon to judge whether the human trials are a success, she said. But if berries turn out to have the same chemopreventative action in humans as they do in rats, it could help prevent many tragic illnesses. “Esophageal cancer has a very low survival rate, only about 10 percent,” she said. “If we can prevent such cancers up front, it would be great.”
In short, “We have an opportunity with berries to prevent or control carcinogenesis,” she said. “It is a natural approach. It is a whole-foods approach.”
And to Dr. Weil, one of the conference course directors, it is an extremely promising line of research. “This is just another example of the amazing synergistic action of whole-plant compounds, which are often both safer and more effective than single-component synthetic drugs,” he said after Sardo’s presentation. “This is exactly the kind of research that needs much more funding and support. Eventually, I think we would discover that a whole range of everyday foods have amazing therapeutic utility against a variety of health conditions.”
Or, as Hippocrates put it, “Let food by your medicine, and medicine be your food.”
In the News: Berries Fight Cancer
By Brad Lemley
Life offers relatively few unambiguous win-win situations, but here’s one: berries, those sweet, natural treats that almost everyone loves may provide potent anticancer compounds.
That’s the conclusion of Christine Sardo, who manages clinical trials on berry consumption and cancer prevention for Ohio State University’s College of Medicine. “We are promoting the concept of ‘fruitraceuticals’ as opposed to pharmaceuticals for cancer, and emphasizing prevention vs. treatment,” she told about 300 health practitioners at the Nutrition and Health Conference in New York City in May. The annual conference, sponsored by Columbia University’s College of Physicians and Surgeons and the University of Arizona’s School of Medicine, brings together the world’s leading nutrition scientists to discuss their latest findings.
Sardo’s revelation was among the conference highlights. She detailed a study published in the March 1, 2006, issue of Cancer Research, in which OSU Public Health professor Gary Stoner and four co-authors fed rats the cancer-causing chemical N-nitrosomethylbenzylamine three times a week for five weeks. After 20 additional weeks, rats that ate a diet consisting of ten percent black raspberries showed reductions in oral, esophageal and colon cancers of about 50 percent compared to rats that did not eat berries. “The berries prevented the entire spectrum of tumors from being initiated and promoted,” Sardo said.
The idea of berries as anticarcinogens began in the late 1980s, when Stoner discovered that ellagic acid, found in many fruits and vegetables, inhibited the genesis of tumors. He then found that berries contained high amounts of ellagic acid, and that black raspberries in particular had more of this compound than all of the other berries he surveyed.
Berries, said Sardo, may be natural counterparts of synthetic drugs such as Tamoxifen. “Studies show Tamoxifen can reduce the risk of breast cancer, but the studies have not evolved to look at the chemopreventive action of foods in our diet, of the things we eat everyday.” That’s a mistake, she said, because it may be that a combination of compounds, such as those found in foods, could be more effective than a single agent. Indeed, there are other constituents in berries that can also prevent cancer, said Sardo, including calcium, folic acid, fiber and various phytochemicals.
Acting together, Sardo said, the compounds in black raspberries slow the growth rate of pre-malignant cancerous cells, and they stimulate those cells to die, a process called apitosis.
The next step is human trials, which Sardo is currently conducting. She is focusing on people with pre-cancerous lesions of the esophagus, mouth and colon, as these are the places where the compounds in black raspberries can be absorbed best. She feeds her human subjects about two ounces of freeze-dried black raspberries daily, the equivalent of about a pound of fresh black raspberries.
While her patients think they are simply eating tasty, freeze-dried-berry slurry, “what we are really doing is feeding them a whopping dose of anthocyanins, phenolic acids, vitamins and minerals three time a day.”
It is too soon to judge whether the human trials are a success, she said. But if berries turn out to have the same chemopreventative action in humans as they do in rats, it could help prevent many tragic illnesses. “Esophageal cancer has a very low survival rate, only about 10 percent,” she said. “If we can prevent such cancers up front, it would be great.”
In short, “We have an opportunity with berries to prevent or control carcinogenesis,” she said. “It is a natural approach. It is a whole-foods approach.”
And to Dr. Weil, one of the conference course directors, it is an extremely promising line of research. “This is just another example of the amazing synergistic action of whole-plant compounds, which are often both safer and more effective than single-component synthetic drugs,” he said after Sardo’s presentation. “This is exactly the kind of research that needs much more funding and support. Eventually, I think we would discover that a whole range of everyday foods have amazing therapeutic utility against a variety of health conditions.”
Or, as Hippocrates put it, “Let food by your medicine, and medicine be your food.”
Thursday, August 23, 2007
Neupogen = E-Coli
Ugh!! I have such a love-hate relationship with Western medicine!
As I wrote recently, I will be forever indebted to the Western medicine doctors who have treated me these past 6+ months. At the end of this journey, I will hopefully be forever cured of this dreadful disease and, if that is in fact what comes to pass, I will have these doctors to thank, in large part, for that accomplishment.
But I can't help but feel incredibly frustrated right now....I was just about to inject myself with one of my ridiculously-expensive Neupogen shots when I paused for a moment to read the label. Get this: the drug is made from a derivative of E-COLI!! How can this be possible?!? Isn't there any other more natural way for my white blood cells to be kicked into gear? Is a bacteria that -- in my mind at least -- is linked to cow feces my only hope?
I immediately called my doctor's office in a panic. "Do you have any idea what is IN this shot that you want me to take?!?" I demanded. The nurse assured me that they have been using Neupogen for years and have never had any e-coli related illnesses result from it (apparently, there are other not-so-fun side effects, but luckily, e-coli poisoning is not one of them). And she also persuaded me that the risk of NOT taking the shot can be quite high: serious infection, neutropenic fever, delay of future chemo treatments, etc.
And so, I just finished injecting myself with a very expensive shot of e-coli. Oh, the irony is too much!
As I wrote recently, I will be forever indebted to the Western medicine doctors who have treated me these past 6+ months. At the end of this journey, I will hopefully be forever cured of this dreadful disease and, if that is in fact what comes to pass, I will have these doctors to thank, in large part, for that accomplishment.
But I can't help but feel incredibly frustrated right now....I was just about to inject myself with one of my ridiculously-expensive Neupogen shots when I paused for a moment to read the label. Get this: the drug is made from a derivative of E-COLI!! How can this be possible?!? Isn't there any other more natural way for my white blood cells to be kicked into gear? Is a bacteria that -- in my mind at least -- is linked to cow feces my only hope?
I immediately called my doctor's office in a panic. "Do you have any idea what is IN this shot that you want me to take?!?" I demanded. The nurse assured me that they have been using Neupogen for years and have never had any e-coli related illnesses result from it (apparently, there are other not-so-fun side effects, but luckily, e-coli poisoning is not one of them). And she also persuaded me that the risk of NOT taking the shot can be quite high: serious infection, neutropenic fever, delay of future chemo treatments, etc.
And so, I just finished injecting myself with a very expensive shot of e-coli. Oh, the irony is too much!
Carrying the Torch
It's been exactly two weeks since my friend, Bonnie, passed away and it's still so hard for me to believe that she is gone. Pete and I went to her memorial service a couple Sundays ago and were incredibly moved by how passionately her husband, Mike, spoke about her during his eulogy. I cannot possibly do justice to what an amazing, inspirational person she was...I realized after listening to Mike's eulogy that I really only knew a small piece of Bonnie, but I am blessed to have known even that part of her. Of course, I am heartbroken for her beautiful children and family who now must re-define for themselves a new sense of "normal" in her absence. But selfishly, I am also incredibly saddened for myself at her loss -- she was my "sherpa" on this crazy mountain climb of mine and I will miss her companionship immensely.
After the service, I hugged Mike and I told him that I will continue to carry the torch for Bonnie, and I sincerely mean that. Pete and I have stood at the same precipice as Bonnie and Mike. We know what it feels like to be given a diagnosis of "advanced cancer" -- the terror that grips your mind; the astonishing disbelief; the wild raging panic of feeling trapped inside a body, inside a life, that you do not want; the feeling of falling down, down, down and not knowing when your fall will stop.
But for some reason -- which I may never understand -- I was given permission to step back from the precipice. I was told that there is a strong chance my cancer will be cured. I was given the opportunity to dream again about my future. I was given hope. Unfortunately, the same was not true for Bonnie and only God knows why. My friend, Denis (who saw his own brother die from colon cancer just a couple years ago), told me the other day that he believes my ability to step back from the edge means that I now have "a big debt to repay," and I totally agree. There is a reason I was permitted to step back from the edge. I don't know yet what that reason is...it's something that I think about constantly...but I feel that carrying the torch for Bonnie is at least a small part of my repayment plan.
If you are interested, click here to link to Bonnie's blog where you can read the eulogy that was given by Mike and by her friends and family. I am sure that as you read this, you will feel the same way that I did during the service: that if I can accomplish even a fraction of what Bonnie did in her lifetime, if I can inspire even half as many people, I will have lived a truly blessed and beloved life.
After the service, I hugged Mike and I told him that I will continue to carry the torch for Bonnie, and I sincerely mean that. Pete and I have stood at the same precipice as Bonnie and Mike. We know what it feels like to be given a diagnosis of "advanced cancer" -- the terror that grips your mind; the astonishing disbelief; the wild raging panic of feeling trapped inside a body, inside a life, that you do not want; the feeling of falling down, down, down and not knowing when your fall will stop.
But for some reason -- which I may never understand -- I was given permission to step back from the precipice. I was told that there is a strong chance my cancer will be cured. I was given the opportunity to dream again about my future. I was given hope. Unfortunately, the same was not true for Bonnie and only God knows why. My friend, Denis (who saw his own brother die from colon cancer just a couple years ago), told me the other day that he believes my ability to step back from the edge means that I now have "a big debt to repay," and I totally agree. There is a reason I was permitted to step back from the edge. I don't know yet what that reason is...it's something that I think about constantly...but I feel that carrying the torch for Bonnie is at least a small part of my repayment plan.
If you are interested, click here to link to Bonnie's blog where you can read the eulogy that was given by Mike and by her friends and family. I am sure that as you read this, you will feel the same way that I did during the service: that if I can accomplish even a fraction of what Bonnie did in her lifetime, if I can inspire even half as many people, I will have lived a truly blessed and beloved life.
Heartfelt Thanks!
I want to take a moment to say thank you again to the many, many friends (many of whom I know are reading this blog faithfully!) who have helped me and my family in so many ways these past months. The dinners, the contributions to my "Get Well" fund, the dog walks, the playdates for my children, the beautiful flowers, the cards and emails, the prayers, etc. -- they have all been so wonderful and such a source of comfort and inspiration for both Pete and I. I cannot express to you how these acts of kindness mean to us!!
The cards and emails with your words of encouragement are what keep me going on my hardest days. The yummy, healthy dinners enable me to spend more time with my children and to continue to exercise (which keeps the chemo drugs circulating fiercely around my body in search of cancer cells!) instead of being tied to the kitchen or fretting about whether my family is eating healthy. The "Get Well" funds have enabled me to pay for expensive medical treatments without going broke (such as the Neupogen shots that I now need to take to increase my white blood count and which cost $700 after insurance! yikes!) The playdates for Luke and Kyle have enabled me to rest and recover comfortably knowing that they are in safe hands. The flowers that I have received have added such brightness and happiness to our home, and the many (what must be hundreds by now!) of prayers that have been said in my honor have touched me immensely.
I am truly blessed to be surrounded by such wonderful friends and family. And I treasure the fact that my children have learned first-hand what friendship truly means. So thank you, thank you, thank you from the bottom of my heart for your incredible generosity and kindness!!
The cards and emails with your words of encouragement are what keep me going on my hardest days. The yummy, healthy dinners enable me to spend more time with my children and to continue to exercise (which keeps the chemo drugs circulating fiercely around my body in search of cancer cells!) instead of being tied to the kitchen or fretting about whether my family is eating healthy. The "Get Well" funds have enabled me to pay for expensive medical treatments without going broke (such as the Neupogen shots that I now need to take to increase my white blood count and which cost $700 after insurance! yikes!) The playdates for Luke and Kyle have enabled me to rest and recover comfortably knowing that they are in safe hands. The flowers that I have received have added such brightness and happiness to our home, and the many (what must be hundreds by now!) of prayers that have been said in my honor have touched me immensely.
I am truly blessed to be surrounded by such wonderful friends and family. And I treasure the fact that my children have learned first-hand what friendship truly means. So thank you, thank you, thank you from the bottom of my heart for your incredible generosity and kindness!!
Wednesday, August 22, 2007
What If Prevention Is The Cure?
I just read something that absolutely resonates with me..
Certain cancer rates are rising in the U.S., and the medical establishment, led by the American Cancer Society, has focused almost exclusively on finding a cure. But other cancer activists want to take a look at the potential -- yes, potential -- causes of cancer, including toxics in the products we buy and in the environment. What if it turns out that prevention is the cure?
While I am all for a "cure" to my cancer -- and hopefully I am well on my way to achieving that goal -- I am also realistic enough to know that I am not immune to getting another kind of cancer or other health issue sometime down the road. Unfortunately, just because I have crossed this bridge once doesn't preclude me from crossing it again.
I know that there are some of you reading my blog who are probably tired all my ramblings about nutrition and pesticides and toxic chemicals, etc. And I have thought about creating a separate blog where I can continue to write about these issues for those who are interested while keeping this blog focused more exclusively on my day-to-day battle against cancer, but the reality is that I feel the issues are inseparable; they are not mutually-exclusive. As the statement above succinctly states: I feel strongly that prevention is going to be my cure.
Yes, modern Western medicine has played an invaluable role in getting this cancer out of my body and I will be forever grateful to the many doctors who have been involved in my care (Dr Gullion, Dr Poen, Dr Garcia-Aguilar, Michael Korn, Jeremy and Shannon), but I think that it's the actions that I take and the purchases that I make (or don't make) going forward that will help to prevent this cancer -- or any other cancer -- from coming back. And so, I cannot, in good faith, write about "beating the Bitch" without also referencing all that I have learned in these past 6 months about the multitude of factors that have been show to cause cancer in the first place.
There is so much information being written about this issue in the media today; I could literally be glued to my computer for hours on end following one article to the next. And these are not articles from super-liberal, left-wing magazines only -- I have read articles that speak about the impact of chemicals and toxins in our environment in media sources such as The Wall Street Journal, Time, Business Week, Vogue, Fortune, CNN, etc -- all very reputable sources from almost any perspective. And yet, American companies still continue to make products which are hazardous to our health and to our environment, and we, as consumers, continue to buy them. Why?? Based on my own personal experience and from conversations I have had with friends, I think that we resist change because change is hard; old habits are hard to break. And change is risky; it takes us out of our comfort zone to places unknown. And, in order to make good decisions, change requires education; but educating ourselves takes time. I am lucky in that I have had these past 6+ months to focus a huge amount of my time to educating myself about the causes of cancer, and I know that most people -- especially parents with young children -- don't have that same luxury. It wasn't that long ago that I was also a working mom trying to juggle a career and a family, and so I remember all too well how precious time can be in the face of multiple competing priorities. As I sit here writing, though, I can't help but hark back to a passage that I included in one of my earliest blog entries which is worth repeating again:
If we buy the illusion that we will live forever, we can waste all the time in the world before we start to live...Proximity to death wakes us up...to embrace death is not morbid; to deny death is morbid. If we know we will die, then we know that we are alive. From this mindful awareness can spring a variety of practices that deepen and enrich our time on this earth.
Of all the lessons that I hope are learned from my experience with cancer it's that we must embrace the life that we want today. Don't wait until tomorrow to start eating healthier or to stop drinking or to switch to a job which is more spiritually fulfilling or to tell your children that you love them. There is no one on this Earth -- myself included -- who has any guarantee that tomorrow will come. We only have this moment.
Certain cancer rates are rising in the U.S., and the medical establishment, led by the American Cancer Society, has focused almost exclusively on finding a cure. But other cancer activists want to take a look at the potential -- yes, potential -- causes of cancer, including toxics in the products we buy and in the environment. What if it turns out that prevention is the cure?
While I am all for a "cure" to my cancer -- and hopefully I am well on my way to achieving that goal -- I am also realistic enough to know that I am not immune to getting another kind of cancer or other health issue sometime down the road. Unfortunately, just because I have crossed this bridge once doesn't preclude me from crossing it again.
I know that there are some of you reading my blog who are probably tired all my ramblings about nutrition and pesticides and toxic chemicals, etc. And I have thought about creating a separate blog where I can continue to write about these issues for those who are interested while keeping this blog focused more exclusively on my day-to-day battle against cancer, but the reality is that I feel the issues are inseparable; they are not mutually-exclusive. As the statement above succinctly states: I feel strongly that prevention is going to be my cure.
Yes, modern Western medicine has played an invaluable role in getting this cancer out of my body and I will be forever grateful to the many doctors who have been involved in my care (Dr Gullion, Dr Poen, Dr Garcia-Aguilar, Michael Korn, Jeremy and Shannon), but I think that it's the actions that I take and the purchases that I make (or don't make) going forward that will help to prevent this cancer -- or any other cancer -- from coming back. And so, I cannot, in good faith, write about "beating the Bitch" without also referencing all that I have learned in these past 6 months about the multitude of factors that have been show to cause cancer in the first place.
There is so much information being written about this issue in the media today; I could literally be glued to my computer for hours on end following one article to the next. And these are not articles from super-liberal, left-wing magazines only -- I have read articles that speak about the impact of chemicals and toxins in our environment in media sources such as The Wall Street Journal, Time, Business Week, Vogue, Fortune, CNN, etc -- all very reputable sources from almost any perspective. And yet, American companies still continue to make products which are hazardous to our health and to our environment, and we, as consumers, continue to buy them. Why?? Based on my own personal experience and from conversations I have had with friends, I think that we resist change because change is hard; old habits are hard to break. And change is risky; it takes us out of our comfort zone to places unknown. And, in order to make good decisions, change requires education; but educating ourselves takes time. I am lucky in that I have had these past 6+ months to focus a huge amount of my time to educating myself about the causes of cancer, and I know that most people -- especially parents with young children -- don't have that same luxury. It wasn't that long ago that I was also a working mom trying to juggle a career and a family, and so I remember all too well how precious time can be in the face of multiple competing priorities. As I sit here writing, though, I can't help but hark back to a passage that I included in one of my earliest blog entries which is worth repeating again:
If we buy the illusion that we will live forever, we can waste all the time in the world before we start to live...Proximity to death wakes us up...to embrace death is not morbid; to deny death is morbid. If we know we will die, then we know that we are alive. From this mindful awareness can spring a variety of practices that deepen and enrich our time on this earth.
Of all the lessons that I hope are learned from my experience with cancer it's that we must embrace the life that we want today. Don't wait until tomorrow to start eating healthier or to stop drinking or to switch to a job which is more spiritually fulfilling or to tell your children that you love them. There is no one on this Earth -- myself included -- who has any guarantee that tomorrow will come. We only have this moment.
Tuesday, August 21, 2007
Skin Care Product Safety
A number of people have emailed me information in the past 6 months regarding skin care products and cosmetics -- I have received almost as many emails about this topic as I have about food. And I fully admit that my eyes have been opened wide to a topic about which I was incredibly naive! I didn't realize, until these friends clued me in, just how dangerous certain skin care products can be to our health. Apparently, unlike with food, the FDA does not monitor any of the ingredients that manufacturers put into their skin care/cosmetic products nor does it require manufacturers to test their own products for safety. And as my friend, Marion, pointed out to me, our skin is incredibly sensitive and capable of absorbing whatever we put on it -- hence, the invention of the nicotine patch and birth control patch.
The UCSF Cancer Center apparently finds this issue to be of enough concern that they actually hosted a seminar about it recently. Unfortunately, it happened while I was in the hospital recovering from surgery so I could not attend, but I found out later that the seminar was co-moderated by a company called Environmental Working Group, which runs a website called Skin Deep. Skin Deep pairs ingredients in nearly 25,000 products against 50 definitive toxicity and regulatory databases, making it the largest integrated data resource of its kind and a great resource for determining whether the products that you use for yourself and for your children are safe. You'll find every major manufacturer listed on the site, from Clinique and Lancome to Bert's Bees and Aveda. Ironically, I just checked out an everyday sunscreen that I bought over the weekend. It is made by a company called Kiss My Face, which I thought was reputable, but unfortunately, the product scored horribly (ranked 7 out of 10 for safety and 9 out of 10 for sunscreen effectiveness, with 10 being the worst for both categories! yikes!) and so back to the store it will go!
Last week, my friend, Jan, forwarded to me an email that talks about a new development in sunscreen. Apparently, a number of manufacturers (including well-known and trusted brands like Coppertone and Banana Boat) have begun to include "nanoparticles" into their sunscreen products. Nanoparticles were once assumed to be benign and their inclusion in products such as cosmetics and sunscreens considered safe, but scientific research has now shown that many types of nanoparticles can be toxic to human tissue and cell structures. If you click here, you will be taken to a website where you can find more information, including a report that ranks sunscreen brands along a color-coded scale for safety. However, there is also a quick visual test that you can use to find out if your sunscreen has the potential to contain nanoparticles: If your sunscreen rubs on white, then you are safe; however, if your sunscreen rubs on transparent then it likely contains nanoparticles. Needless to say, when I read Jan's email, I did the quick test and ended up throwing away all of our sunscreen!
All of the information that I have read or that friends have forwarded to me about skin care and cosmetic products in these past 6 months only further supports my own personal theory that I likely did not get cancer from any single cause -- I think that I got cancer partly because of genetics, partly because of diet, and partly because of the toxins which surround me every day (such as in food or skin care products.) In this country, there are soooo many toxins that we cannot easily avoid and many that we don't even know exist, and this is why I feel such a sense of urgency now to better understand what is contained in the products that I buy. I want the products that I put on my body (and on my family's bodies) to be as safe as the ones that I put in our bodies. In the end, the best that I can do -- the only way to live a life of "no regrets" -- is to control/avoid the toxins that I know exist. Living with cancer has made me a much more educated (and probably cynical) consumer than I ever was before. I no longer believe that manufacturers or agencies, such as the FDA, have the same standards that I do. Some do, but not all. So it's up to me to educate myself and figure out which companies are aligned with my values and then adjust my purchases accordingly. If you agree, then stick with me...I'll keep you posted on what I learn...
The UCSF Cancer Center apparently finds this issue to be of enough concern that they actually hosted a seminar about it recently. Unfortunately, it happened while I was in the hospital recovering from surgery so I could not attend, but I found out later that the seminar was co-moderated by a company called Environmental Working Group, which runs a website called Skin Deep. Skin Deep pairs ingredients in nearly 25,000 products against 50 definitive toxicity and regulatory databases, making it the largest integrated data resource of its kind and a great resource for determining whether the products that you use for yourself and for your children are safe. You'll find every major manufacturer listed on the site, from Clinique and Lancome to Bert's Bees and Aveda. Ironically, I just checked out an everyday sunscreen that I bought over the weekend. It is made by a company called Kiss My Face, which I thought was reputable, but unfortunately, the product scored horribly (ranked 7 out of 10 for safety and 9 out of 10 for sunscreen effectiveness, with 10 being the worst for both categories! yikes!) and so back to the store it will go!
Last week, my friend, Jan, forwarded to me an email that talks about a new development in sunscreen. Apparently, a number of manufacturers (including well-known and trusted brands like Coppertone and Banana Boat) have begun to include "nanoparticles" into their sunscreen products. Nanoparticles were once assumed to be benign and their inclusion in products such as cosmetics and sunscreens considered safe, but scientific research has now shown that many types of nanoparticles can be toxic to human tissue and cell structures. If you click here, you will be taken to a website where you can find more information, including a report that ranks sunscreen brands along a color-coded scale for safety. However, there is also a quick visual test that you can use to find out if your sunscreen has the potential to contain nanoparticles: If your sunscreen rubs on white, then you are safe; however, if your sunscreen rubs on transparent then it likely contains nanoparticles. Needless to say, when I read Jan's email, I did the quick test and ended up throwing away all of our sunscreen!
All of the information that I have read or that friends have forwarded to me about skin care and cosmetic products in these past 6 months only further supports my own personal theory that I likely did not get cancer from any single cause -- I think that I got cancer partly because of genetics, partly because of diet, and partly because of the toxins which surround me every day (such as in food or skin care products.) In this country, there are soooo many toxins that we cannot easily avoid and many that we don't even know exist, and this is why I feel such a sense of urgency now to better understand what is contained in the products that I buy. I want the products that I put on my body (and on my family's bodies) to be as safe as the ones that I put in our bodies. In the end, the best that I can do -- the only way to live a life of "no regrets" -- is to control/avoid the toxins that I know exist. Living with cancer has made me a much more educated (and probably cynical) consumer than I ever was before. I no longer believe that manufacturers or agencies, such as the FDA, have the same standards that I do. Some do, but not all. So it's up to me to educate myself and figure out which companies are aligned with my values and then adjust my purchases accordingly. If you agree, then stick with me...I'll keep you posted on what I learn...
Round 4
Round 4 of my chemo treatments went off without a hitch yesterday -- I'm now 50% done! Woo hoo!! The only issue that came up is that my white blood count has fallen again (it's now 1.0, and 1.5 is the low end of normal) and so my doctor is going to have me take daily shots of some drug (Neupogen??) that will help my bone marrow to produce more white blood cells. Other than that, everything was same-old, same-old. I had FOLFOX again, minus the cal-mag infusion, and am feeling all the same old symptoms (headache, neuropathy, etc), but at least I now know that they will eventually dissipate and so it's a much easier emotional battle this time.
In fact, I was talking yesterday with my friend, Carla, about my treatments. Carla is an avid athlete and has run 6 marathons in her lifetime. She offered to help me train for the Nike marathon next year and was asking if I was familiar yet with the race course. She talked about how helpful it is to have run the race course before race day so that you are prepared for any hard stretches; she said that knowing when the hard parts are coming up and how long they will last makes the run much easier. I found this to be such a perfect analogy to my chemo treatments!!
In fact, I was talking yesterday with my friend, Carla, about my treatments. Carla is an avid athlete and has run 6 marathons in her lifetime. She offered to help me train for the Nike marathon next year and was asking if I was familiar yet with the race course. She talked about how helpful it is to have run the race course before race day so that you are prepared for any hard stretches; she said that knowing when the hard parts are coming up and how long they will last makes the run much easier. I found this to be such a perfect analogy to my chemo treatments!!
Monday, August 20, 2007
Meat and Poultry Labels
While I am on the topic of food labels, I thought I would share information about how to decipher meat and poultry labels as well. Again, this info came from the Parents.com website:
So what does this all mean? It means that, whenever possible, the best meat and poultry to buy and serve is "organic" since, by definition, it encompasses all of the important labels above.
Antibiotic-free
The claim: The animal was never given antibiotics to prevent infection.
What to know: Antibiotics aren't necessarily dangerous, but they're a public-health concern because overuse may lead to antibiotic-resistant bacteria.
[Julie's note: In The Omnivore's Dilemma, Michael Pollen explains that one of the main reasons that "feedlot cattle" are given antibiotics in the first place is because they tend to become very sick from eating a diet of corn and animal by-products. Because of the e-coli scares in recent years, cattle farmers are no longer allowed to feed their cattle reconstituted cattle parts as a source of protein. (Not sure who came up with this hair-brained, cannibalistic idea in the first place, but Thank God it's now banned!) However, the USDA DOES still allow farmers to fatten their cattle using cattle fat from the slaughter houses and they are still permitted to fed poultry and pork parts to their cattle as a source of protein (despite the fact that these animals, if not grown organically, are still allowed to be fed cattle parts, so the cycle continues.) And it's these animal by-products, combined with a diet of corn, which make the cattle in feedlots get sick. Without the use of antibiotics, many of the cattle would never make it to slaughter. And keep in mind that most cattle are slaughtered anywhere from 9 to 30 months of age -- the fact that they cannot live that long without getting a debilitating illness is horrific. Yuck.]
Free-range
The claim: The animal had some access to the outdoors for most of its life.
What to know: Though this sounds kinder and gentler, it only means the animal had the option of going outside -- there's no guarantee that it actually did.
Grass-fed
The claim: The cattle ate grass (not animal by-products) for some or all of its life.
What to know: Grass-fed beef tends to be more nutritious, packing more omega-3 fats and higher amounts of vitamins A and E.
Hormone-free
The claim: The animal didn't receive any hormones to speed growth.
What to know: It's unclear whether hormone residues in meat are harmful, so it's a personal choice. But this claim is meaningless on poultry or pork because, by law, chickens and pigs aren't allowed to be given hormones.
[Julie's note: There is growing evidence linking the hormones levels found in cow products -- e.g., milk, cheese, beef -- to the fact that American girls are menstruating at a increasingly younger ages than prior generations. And the longer that a woman menstruates, the higher her chances are of developing breast cancer.]
Natural
The claim: The meat or poultry contains no artificial ingredients.
What to know: The term is vague and used loosely, so you have to read the fine print. In some cases, it means the product simply has no added colors.
Organic
The claim: No hormones, antibiotics, or animal by-products were given. The animal had access to fresh air and pasture.
What to know: This is one of the few claims that are strictly government-regulated.
So what does this all mean? It means that, whenever possible, the best meat and poultry to buy and serve is "organic" since, by definition, it encompasses all of the important labels above.
The Definition of "Organic"
Since I began writing about nutrition on this blog, I have had many people ask me "So what does the term 'organic' actually mean?" The word is obviously being used in some very wacky and unconventional ways these days -- for example, my parents discovered "organic photography" at a local art show recently and we are all still scratching our heads trying to figure out what the heck this means! -- and so it's no wonder the average consumer is confused. In order to educate myself so that I can better answer this question when asked, I just did a bit of research and stumbled upon the following information on the Parents.com website that I thought I would share:
If you are interested in reading more, click here.
Q: What does the term organic mean?
A: According to the National Organic Program of the United States Department of Agriculture (USDA), organic farmers use renewable resources and growing methods that conserve soil and water. Crops are produced without conventional chemical pesticides and without fertilizers made with synthetic materials or sewage. Animals raised on organic farms for meat, eggs, or dairy products eat organic feed, have access to pasture, and are free of antibiotics and growth hormones. Organic regulations also prohibit bioengineering (e.g., genetically engineered and/or cloned products) or irradiation in processing.
[Julie's note: In the book Fast Food Nation, the author, Eric Schlosser, talks about irradiation. He explains that the practice has become popular as a way to kill the e-coli bacteria which has been found in our food supply in recent years. Instead of focusing on the primary causes of meat contamination -- the feed being given to cattle, the overcrowding at feedlots, the poor sanitation at slaughterhouses, poorly trained slaughterhouse workers, and lack of stringent government oversight -- the meatpacking industry and the USDA now advocate using this technological solution instead. To further the point, I read another article recently which explained that cattle which are grass-fed are actually NOT infected by e-coli; it's only cattle which are corn-fed who develop this disease. Apparently, because cows are unable to properly digest corn, their stomachs become extremely acidic (remember, cattle are grass eaters by design and the only reason that we now feed them corn is because it is a cheap food supply for farmers and because corn diets create the high-fat, marbled beef that so many American consumers now crave!) Unfortunately, though, this acidity creates prime growing conditions for e-coli. According to this study, corn-fed cattle which are later switched to being grass-fed experience an 80% reduction in the amount of e-coli in their stomachs; by comparison, cattle that are grass-fed from day one have little or no e-coli.
So while killing off e-coli bacteria via irradiation might sound like a great idea at first glance, Schlosser points out that the only way that beef can become tainted with e-coli in the first place is if it has come into contact with contaminated feces during the slaughter process. And so, while irradiation might be effective in killing any and all e-coli bacteria on the meat -- which is great -- in the end, you'll simply be eating irradiated beef mixed with or covered in irradiated poop.
Oh my Lord, I cannot think of anything more disgusting! I think I'll just try my best to eat grass-fed beef and avoid contaminated meat in the first place, thank you very much.]
Q: How do I know if a food is organic?
A: If a product is labeled organic, you can be sure it is, says USDA spokesperson Joan Shaffer. By law, companies can't use that label unless their operation has been certified organic by a USDA-approved agent. You can also look for the USDA Organic seal, which tells you that the product is at least 95 percent organic and that the manufacturer has met national organic standards for processing and handling.
Q: Why are organic foods so much more expensive?
A: That higher price tag (especially for meat, eggs, and dairy products) is because organics cost more to produce, from start to finish. For one thing, farmers have to follow the strict certification regulations, which takes extra time and labor. Crop yields are also lower because farmers can't use conventional chemicals that boost production. Raising animals is also pricier: Organic feed is more expensive, and giving animals room to roam in pastures ups overall farming costs as well.
Q: Are organic foods better for my children's health?
A: Opinion is split. Though the USDA and the Food and Drug Administration (FDA) consider irradiation and the use of growth hormones and antibiotics safe, some parents still choose to avoid them by buying organic meat, eggs, and milk.
[Julie's note: Don't forget that the FDA is also the organization which approved the use of butane lighter fluid in McDonald's Chicken McNuggets!! I will give them the benefit of the doubt and assume they did so because they consider butane additive to also be "safe" -- just like the practices above -- and they are not intentionally trying to kill our children. But either way, I don't have much faith anymore in the FDA's decision-making ability.]
Pesticides are another major issue in the organic debate. Many scientists, including Carl Winter, Ph.D., director of the FoodSafe Program at the University of California at Davis, maintain that the typical levels of conventional pesticides in the diet aren't a health concern, while proponents of organics argue that the fewer pesticides, the better -- especially for children, who may be more vulnerable to toxins.
[Julie's note: According to a 2003 University of Washington study, the pesticide levels in children who eat a diet of conventionally produced food are six times higher than for those children who eat a diet of organic food. Common sense -- and stage 3 colon cancer -- make me think that this cannot possibly be safe.]
From there it gets trickier, because while organic farmers don't use conventional pesticides, they may still use natural versions, which are not completely safe either. However, if you'd like to reduce your child's exposure to conventional pesticides, organic produce is for you. "Kids get a higher percentage of their calories from fruits than adults do, so buying organic can make a difference," says Julie Upton, R.D., a spokesperson for the American Dietetic Association. And organic fruits and vegetables have been shown to contain less pesticide residue than regular produce. You can peel conventional produce to get rid of some residues, but that also removes valuable nutrients and fiber. In any case, the same precautions apply to all produce: Rinse thoroughly before eating to wash away any pesticides or germs. No matter which you choose, most experts agree: The health benefits of eating plenty of produce -- organic or otherwise -- outweigh the potential risks.
Q: Is organic food more nutritious?
A: There's no widely accepted scientific evidence that organics are nutritionally superior. However, one recent study has shown that organic fruits and vegetables have more phytochemicals--naturally occurring substances that seem to help humans fight disease. One possible reason: Plants untreated with pesticides produce more of these substances to ward off bugs and disease naturally. But right now, experts don't know what levels of phytochemicals are beneficial, so it's unclear whether the extra levels make a difference to your child's health. On the flip side, though, just as pesticide-free plants churn out health-boosting phytochemicals, plants undergoing stress from fighting bugs produce natural toxins--and these are also potentially harmful to humans in large amounts.
[Julie's note: I've read quite a bit about this idea and will definitely write more soon!]
Q: I shop at farmers' markets. Is that produce considered organic?
A: Not necessarily. A farm must be certified organic under USDA regulations to sell organic produce. So unless the label says so, chances are, it's just fresh-picked--not organic.
[Julie's note: In my experience, there are also many farmers at the farmer's market who grow organic produce but just don't go through all the necessary steps to become officially certified and, therefore, cannot label their produce as such. Instead, these farmers rely on the personal relationships that they develop with consumers to spread the word that they are organic. So don't necessarily assume that, just because a stand at the farmer's market does not say 'organic', that the food has not been grown under all the necessary conditions.]
Q: Is natural the same thing as organic?
A: Not at all. The term organic on a food label guarantees a specific method of growing and processing food, while the word natural simply means free of anything synthetic, such as artificial flavors, colors, or preservatives. It doesn't promise anything about how the food was grown or processed.
Q: What about packaged organic products like cookies or pasta?
A: When it comes to packaged products, an organic label doesn't automatically make it good for you; just look at the rows of organic potato chips at health-food markets. As for cookies and pastas, grains don't typically have high levels of pesticide residue anyway, so the organic label is probably irrelevant to safety. And, as always, you still need to read labels, since processed organic food can be loaded with fat, calories, sugar, and salt.
If you are interested in reading more, click here.
Sunday, August 19, 2007
4th Chemo Tomorrow
I have my 4th chemo appointment tomorrow morning at 9am. I am so sad....I feel so great today and it just sucks to think that I am going to be knocked down again for another 5-7 days. Moan!
We had a small birthday party for Kyle today. His birthday is not for another week, but I knew that I wouldn't feel up for pulling together a party during one of my "bad" weeks so we bumped the party up to today. The funny thing is that it didn't matter either way -- the little guy had no clue that all the festivities were in his honor. He was just happy to be surrounded by his friends and to eat pizza (organic and mostly vegetarian, of course!) and cake. He was so cute blowing out the candles -- he didn't really understand the fact that he actually needed to lean toward the cake when blowing, and so he sat back about two feet and made his funny little scrunched-up-face, 2-year-old blows from there. He didn't have a prayer -- the flames barely flickered! Luckily, one of Luke's friends helped him out in order to keep the festivities rolling along.
During the party, my neighbor and my friends, Jan and Cindi, were all commenting on how great I look despite everything that I have gone through. In fact, Jan was joking that I really need to avoid going down to the school to drop Luke off once school is back in session because all the other moms who have been kind enough to bring meals and/or help in other ways are going to think that it's all a big joke and that I am secretly just fine. Ha!! Ohhhh, I only wish! I told them that the only reason that everyone thinks I still look great is that no one ever see me on my bad days. I basically go into hiding for about 7 days and then resurface once I feel like my old self again. And since I haven't lost my hair, I still look pretty normal. Although, that might be changing soon -- my hair is starting to fall out like crazy!! The doctor told me that it would "thin out" a bit, but I feel like I am losing at least 500 hairs a day -- yikes!! And I still have 10 weeks to go.
Anyway, please keep me in your prayers tomorrow. I am hoping that this round of chemo is easier than the last three (or at least the same as the last time, since that was my easiest so far.) It's still crazy for me to think of the fact that I am pouring poison into my body every other week....Just thinking about it makes me realize just how powerful and evil cancer really is. I hope that I live to see the day when a cancer treatment is developed that is as easy as popping an aspirin. That will truly be a day for celebration!
We had a small birthday party for Kyle today. His birthday is not for another week, but I knew that I wouldn't feel up for pulling together a party during one of my "bad" weeks so we bumped the party up to today. The funny thing is that it didn't matter either way -- the little guy had no clue that all the festivities were in his honor. He was just happy to be surrounded by his friends and to eat pizza (organic and mostly vegetarian, of course!) and cake. He was so cute blowing out the candles -- he didn't really understand the fact that he actually needed to lean toward the cake when blowing, and so he sat back about two feet and made his funny little scrunched-up-face, 2-year-old blows from there. He didn't have a prayer -- the flames barely flickered! Luckily, one of Luke's friends helped him out in order to keep the festivities rolling along.
During the party, my neighbor and my friends, Jan and Cindi, were all commenting on how great I look despite everything that I have gone through. In fact, Jan was joking that I really need to avoid going down to the school to drop Luke off once school is back in session because all the other moms who have been kind enough to bring meals and/or help in other ways are going to think that it's all a big joke and that I am secretly just fine. Ha!! Ohhhh, I only wish! I told them that the only reason that everyone thinks I still look great is that no one ever see me on my bad days. I basically go into hiding for about 7 days and then resurface once I feel like my old self again. And since I haven't lost my hair, I still look pretty normal. Although, that might be changing soon -- my hair is starting to fall out like crazy!! The doctor told me that it would "thin out" a bit, but I feel like I am losing at least 500 hairs a day -- yikes!! And I still have 10 weeks to go.
Anyway, please keep me in your prayers tomorrow. I am hoping that this round of chemo is easier than the last three (or at least the same as the last time, since that was my easiest so far.) It's still crazy for me to think of the fact that I am pouring poison into my body every other week....Just thinking about it makes me realize just how powerful and evil cancer really is. I hope that I live to see the day when a cancer treatment is developed that is as easy as popping an aspirin. That will truly be a day for celebration!
Friday, August 17, 2007
Feeling Good
Sorry for the long span of silence....this is a "good" week for me, though, and I am feeling too well to sit inside at the computer and write....too many fun summer activities to do! Gotta enjoy it while it lasts!
Next week I'll be stuck inside again, though, so more to come then....
Next week I'll be stuck inside again, though, so more to come then....
Wednesday, August 15, 2007
I like to walk alone on country paths, putting each foot down on the earth in mindfulness, knowing that I walk on the wondrous earth. In such moments, existence is a miraculous and mysterious reality.
People usually consider walking on water or in thin air a miracle. But I think the real miracle is not to walk either on water or in thin air, but to walk on earth. Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child--our own two eyes. All is a miracle.
-Thich Nhat Hanh, "Miracle of Mindfulness"
People usually consider walking on water or in thin air a miracle. But I think the real miracle is not to walk either on water or in thin air, but to walk on earth. Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child--our own two eyes. All is a miracle.
-Thich Nhat Hanh, "Miracle of Mindfulness"
Thursday, August 9, 2007
Prayer to Live With Grace
If you scroll down to my blog entry from June 21, 2007, you'll see the entry where I first mention my friend Bonnie. If you re-read it, you will understand that the greatest gift that Bonnie gave to me was to show me early on how to confront a life-threatening illness with grace. At a time when I easily could have crumbled, she showed me a different path and I will be forever grateful to her for that.
Call it coincidence or call it fate, but just moments after receiving the email about Bonnie's death from her husband, I just received the following daily email from beliefnet.com :
Prayer to Live With Grace
- Rabbi Rami M. Shapiro
I like to think that my receiving this email on today of all days is more than just a simple coincidence. In fact, like Oprah, I believe that there is no such thing as a coincidence!
Call it coincidence or call it fate, but just moments after receiving the email about Bonnie's death from her husband, I just received the following daily email from beliefnet.com :
Prayer to Live With Grace
May we discover through pain and torment,
the strength to live with grace and humor.
May we discover through doubt and anguish,
the strength to live with dignity and holiness.
May we discover through suffering and fear,
the strength to move toward healing.
May it come to pass that we be restored to health and to vigor.
May Life grant us wellness of body, spirit, and mind.
And if this cannot be so,
may we find in this transformation and passage
moments of meaning, opportunities for love
and the deep and gracious calm that comes
when we allow ourselves to move on.
the strength to live with grace and humor.
May we discover through doubt and anguish,
the strength to live with dignity and holiness.
May we discover through suffering and fear,
the strength to move toward healing.
May it come to pass that we be restored to health and to vigor.
May Life grant us wellness of body, spirit, and mind.
And if this cannot be so,
may we find in this transformation and passage
moments of meaning, opportunities for love
and the deep and gracious calm that comes
when we allow ourselves to move on.
- Rabbi Rami M. Shapiro
I like to think that my receiving this email on today of all days is more than just a simple coincidence. In fact, like Oprah, I believe that there is no such thing as a coincidence!
My Dear Friend, Bonnie
I just received an email from my friend, Bonnie's, husband. Bonnie lost her battle with leukemia and passed away at 8:45am this morning. As predicted by the team at UCSF, her white blood cells did not recover to aid in her fight against a lung infection that she contracted. She passed away in her sleep with minimal pain and discomfort, with her Aunt Hope and her husband by her side.
Ohhhhh, my heart is crying right now!! I have known for more than a week that this was going to be the likely outcome, but it doesn't make the ending any easier. It is so hard for me to comprehend that I will never see her again; that her husband and children will never see her again; that her laughter will never again fill the room. How does the mind begin to make sense of something like this?
Rare Good News
The Journal of Nutrition wrote about
Some researchers who tested chocolate out.
It may help stave off heart attacks, they claim.
Red wine, we've known for years, can do the same.
Without the need of any doctor's urging,
I feel a healthy diet plan emerging.
By Calvin Trillin, The Nation, November 27, 2000
Some researchers who tested chocolate out.
It may help stave off heart attacks, they claim.
Red wine, we've known for years, can do the same.
Without the need of any doctor's urging,
I feel a healthy diet plan emerging.
By Calvin Trillin, The Nation, November 27, 2000
Cycle #3 Update
Today is Thursday -- three days post-cycle #3 of FOLFOX -- and I am thrilled to report that this has been my easiest cycle yet. Yippee!!! Although, keep in mind that the prior two were pretty darn horrific, so it's still no walk in the park. But overall I am doing okay.
My ever-ready Chief Cancer Officer (aka, Pete) was completely prepared this time with all of the paraphernalia and supplies that I needed upon returning home (e.g., Gatorade to better balance my eletrolytes, thin wool gloves to keep my hands warm and to ward off neuropathy, a completely full 3-liter container of water, etc) and so far, they all seem to be helping. Although fatigue set in pretty hard last night and I am still really wiped out today, I am happy to report that the weird hand cramping that I had last time has been pretty minimal as long as I avoid anything cold (hence the gloves) and I haven't had any bad chest cramps yet.
In fact, you might remember that my doctor eliminated the calcium-magnesium infusion this time around....well, my mom and I did a bit of research in a nutrition book that I have and uncovered some really interesting info:
Magnesium in considered the "antistress" mineral. It is a natural tranquilizer, as it functions to relax skeletal muscles as well as the smooth muscles of blood vessels and the gastrointestinal tract. (While calcium stimulates muscle contractions, magnesium relaxes them.) Because of its influence on the heart, magnesium is considered important in preventing coronary artery spasm, a significant cause of heart attacks. Spasms of the blood vessels lead to insufficient oxygen supply through them and pain, injury, or death of the muscle tissue that they nourish. To function optimally, magnesium must be balanced in the body with calcium, phosphorus, potassium and sodium chloride. For example, with low magnesium, more calcium flows into the vascular muscle cells, which contracts them -- leading to tighter vessels and higher blood pressure.
I am no bio-chemist, but after reading this and knowing that I am not having any chest cramps this time versus last (with the only difference being the elimination of the cal-mag supplement) I have to wonder whether the cal-mag infusion was causing my problems. Maybe my body just couldn't metabolize the infusion correctly and too much calcium was absorbed versus magnesium, causing the chest spasms. In the end it doesn't really matter -- I am just thrilled to be doing better and feeling less like I am about to have a heart-attack.
So today, I am just laying low (Thursdays seem to be my hardest days of the cycle.) I think I'll go watch some mindless TV for awhile and catch up on all my celebrity gossip, and hopefully tomorrow I'll be able to re-join the real world, at least for a short while.
My ever-ready Chief Cancer Officer (aka, Pete) was completely prepared this time with all of the paraphernalia and supplies that I needed upon returning home (e.g., Gatorade to better balance my eletrolytes, thin wool gloves to keep my hands warm and to ward off neuropathy, a completely full 3-liter container of water, etc) and so far, they all seem to be helping. Although fatigue set in pretty hard last night and I am still really wiped out today, I am happy to report that the weird hand cramping that I had last time has been pretty minimal as long as I avoid anything cold (hence the gloves) and I haven't had any bad chest cramps yet.
In fact, you might remember that my doctor eliminated the calcium-magnesium infusion this time around....well, my mom and I did a bit of research in a nutrition book that I have and uncovered some really interesting info:
Magnesium in considered the "antistress" mineral. It is a natural tranquilizer, as it functions to relax skeletal muscles as well as the smooth muscles of blood vessels and the gastrointestinal tract. (While calcium stimulates muscle contractions, magnesium relaxes them.) Because of its influence on the heart, magnesium is considered important in preventing coronary artery spasm, a significant cause of heart attacks. Spasms of the blood vessels lead to insufficient oxygen supply through them and pain, injury, or death of the muscle tissue that they nourish. To function optimally, magnesium must be balanced in the body with calcium, phosphorus, potassium and sodium chloride. For example, with low magnesium, more calcium flows into the vascular muscle cells, which contracts them -- leading to tighter vessels and higher blood pressure.
I am no bio-chemist, but after reading this and knowing that I am not having any chest cramps this time versus last (with the only difference being the elimination of the cal-mag supplement) I have to wonder whether the cal-mag infusion was causing my problems. Maybe my body just couldn't metabolize the infusion correctly and too much calcium was absorbed versus magnesium, causing the chest spasms. In the end it doesn't really matter -- I am just thrilled to be doing better and feeling less like I am about to have a heart-attack.
So today, I am just laying low (Thursdays seem to be my hardest days of the cycle.) I think I'll go watch some mindless TV for awhile and catch up on all my celebrity gossip, and hopefully tomorrow I'll be able to re-join the real world, at least for a short while.
Monday, August 6, 2007
FOLFOX Again...
Well, I am home now from my latest chemo session. Everything went fine at the cardiologist's office today -- my heart looks great and the doctor said that I am in great cardiovascular condition -- and so he gave me the "green light" to continue with chemo. Pete and I met briefly with Dr Gullion before getting started and he left the decision to me as to whether to stay on FOLFOX or switch to FOLFIRI. As far as I was concerned, though, there was no decision to be made. Both Michael and Dr Gullion agreed that FOLFIRI is not yet totally proven and FOLFOX is. And since I have never been a gambler, I chose FOLFOX.
Like I told the cardiologist on Friday, as long as they could give me some confidence that I was not doing permanent damage to my heart I wanted to continue. The fact that all of my prior symptoms were 95% gone by this morning also helps -- as long as I know that everything I am feeling is only temporary, I can keep going. So now, the challenge is for me to stay focused on the fact that my body will heal as the side effects take hold and try to trick my mind into thinking otherwise!
So as here I sit with the third dose of FOLFOX coursing through my body, searching and destroying any and all fast-dividing cells, I can't help but think that I am, yet again, walking through fire (and, unfortunately, having intense hot flashes to prove it -- phew, my body really does not like what's being done to it!) Shannon half-joked that heading into chemo must feel a bit like "putting your hand into a moving blender." She is right -- this is exactly how it feels! I just prefer to use the euphemism of "walking through fire" since it sounds more dramatic (and less messy--hee, hee!) But either way, the emotional hurdle is the same.
Dr Gullion commented today that he thought I was incredibly courageous and that he admires the bravery that I have shown through this whole ordeal. I appreciated his words of encouragement -- they mean a great deal to me, especially coming from someone who has seen and treated hundreds, or probably even thousands, of cancer patients -- but I told him that I don't think of myself as brave. I really don't. I guess that there is an element of bravery in the fact that some people completely give up; they just can't handle how difficult of a physical and emotional rollercoast cancer treatment can be. And so, maybe the fact that I am continuing to "put my hand in a moving blender" can be construed as bravery. But the reality is that I don't think the choices I am making are any different from those that any other mom/wife/daughter/friend would make in my shoes: I have a hell of a lot to live for and, far as I can tell, only one clear path to the top of my mountain. So, from my perspective, it's not like I am choosing one path over another. From my perspective, there is no choice.
Like I told the cardiologist on Friday, as long as they could give me some confidence that I was not doing permanent damage to my heart I wanted to continue. The fact that all of my prior symptoms were 95% gone by this morning also helps -- as long as I know that everything I am feeling is only temporary, I can keep going. So now, the challenge is for me to stay focused on the fact that my body will heal as the side effects take hold and try to trick my mind into thinking otherwise!
So as here I sit with the third dose of FOLFOX coursing through my body, searching and destroying any and all fast-dividing cells, I can't help but think that I am, yet again, walking through fire (and, unfortunately, having intense hot flashes to prove it -- phew, my body really does not like what's being done to it!) Shannon half-joked that heading into chemo must feel a bit like "putting your hand into a moving blender." She is right -- this is exactly how it feels! I just prefer to use the euphemism of "walking through fire" since it sounds more dramatic (and less messy--hee, hee!) But either way, the emotional hurdle is the same.
Dr Gullion commented today that he thought I was incredibly courageous and that he admires the bravery that I have shown through this whole ordeal. I appreciated his words of encouragement -- they mean a great deal to me, especially coming from someone who has seen and treated hundreds, or probably even thousands, of cancer patients -- but I told him that I don't think of myself as brave. I really don't. I guess that there is an element of bravery in the fact that some people completely give up; they just can't handle how difficult of a physical and emotional rollercoast cancer treatment can be. And so, maybe the fact that I am continuing to "put my hand in a moving blender" can be construed as bravery. But the reality is that I don't think the choices I am making are any different from those that any other mom/wife/daughter/friend would make in my shoes: I have a hell of a lot to live for and, far as I can tell, only one clear path to the top of my mountain. So, from my perspective, it's not like I am choosing one path over another. From my perspective, there is no choice.
Friday, August 3, 2007
Bernadette's Story
Awhile back, I wrote about an old high-school friend of mine, Bernadette. You might remember...she is the one who is a mother of 5 and who was diagnosed with stage 4 lung cancer at the age of 38? Well, she has been undergoing aggressive chemo treatment in her hometown of York, PA since last November, but to no avail -- the cancer was not responding. In desperation, she and her husband packed their bags a few weeks ago and headed south to John Hopkins Medical Center (in Baltimore, MD) to consult with a renowned lung cancer expert there. After reviewing her medical records and treatment history, the doctor suggested to Bern that she take part in a clinical trial since her situation was so dire (Note: Since clinical trials can be risky, in most cases, the people who agree to participate are the ones who feel they have nothing to lose.) In order to participate, however, the doctor told her that she first needed to undergo a number of scans and test so that they would have a very clear picture of her current state. Well, all I can say is THANK GOD for this doctor!! As it turns out, Bern learned that she does not have lung cancer; she has BREAST cancer. The doctors in York completely and utterly messed up. Not only did they misdiagnose her, but they then treated the wrong disease for 6 months!!! Hmmm...do you think that maybe this is why her cancer was not responding?
There were two thoughts that came to mind when I read Bern's email:
1) The NY Times article that I mentioned in my blog entry last weekend spoke at length about the varying degrees of expertise for cancer treatment that exist in different parts of the country. I think that Bernadette's case speaks volumes about this very point. York Pennsylvania is a small town (population is about 40K). The nearest big town is Philadelphia, but that is almost 2 hours away. I can understand why Bernadette, with 5 children (one of whom was a newborn baby when she was first diagnosed,) chose to be treated at a local hospital. I cannot imagine driving 4 hours round-trip every day for appointments when there are children left at home to care for -- and I only have two! But it's especially hard to imagine making a 4-hour trip when the benefits of traveling that far are not totally clear. Which leads me to my next point...
2) The average person has no clue how to evaluate the differences in medical care that exist in this country. In fact, the average person (e.g., Bern and myself) doesn't even realize that there ARE differences. This is why I am so eternally grateful to Jeremy and Shannon who relentlessly and adamantly refused to allow me to be treated at the local community hospital here in Marin without at least getting a second opinion from doctors at UCSF. Jeremy and Shannon both did their medical training and worked at Northwestern University in Chicago and so they are intimately familiar with the level of expertise that is gained in these high-volume teaching universities. When I was first diagnosed, I had no clue which direction to turn. As far as I could tell, the doctors here in Marin were as good as any. They seemed to know what they were doing and the thought of seeking second opinions was overwhelming to both Pete and I. Do we really need a second opinion -- the doctors here seem so confident in their recommendations? Where should we go to get it? Is UCSF a "top cancer center" or should we consider someplace like MD Anderson in Houston? Shouldn't I just start treatment as quickly as possible? I feel like I have a ticking time bomb inside of me!!
But Jeremy and Shannon did not give in. In almost every conversation that we had (and we had hundreds in the couple weeks after I was diagnosed!) they absolutely insisted that I seek a second opinion at UCSF and I am so glad that they did. As it turns out, the Marin doctors that I have had (Dr Poen and Dr Gullion) have both been wonderful. They are clearly on the cutting edge of treatment and have been in complete agreement with the doctors at UCSF. But I think that my situation is probably unique relative to other parts of the country. We live very close to two top-notch universities (UCSF is 10 miles away and Stanford is about 40 miles) and so many of the doctors who come to Marin hark from these top teaching centers (Dr Gullion worked at UCSF for 20 years and Dr Poen headed up Stanford's radiation oncology group.) I am sure that the same is not true for most other small towns in America. If nothing else, doctors in a small town or in a community hospital setting, by definition, do not see the same number of cases that doctors at a high-volume center see. That is why I so adamantly wanted my surgery to be done by my surgeon at UCSF. Dr Garcia-Aguilar has performed literally hundreds of my exact surgery, whereas the surgeons in Marin see only a fraction of this. As my friend, Michael, told me, "The skill of the surgeon can make or break whether you survive this cancer or not." And there is only one way for a surgeon to become skilled at surgery: practice, practice, practice.
Needless to say, Bern has "fired" her York doctors and is now scrambling to find top breast cancer experts (if you know of any, please shoot me an email!) In the meantime, she is being treated at John Hopkins and has a whole new outlook on life. As you may or may not know, breast cancer (even stage 4 as Bern's is) is much more treatable than lung cancer. There are woman who live for years and years with metastatic breast cancer, but the same is not true for lung cancer. And so I can sense that her fighting spirit is back with full-force and she is embracing life as never before.
The moral of this whole story is that if you or someone you love receives a cancer diagnosis, the single best thing you can do is to be seen by doctors at a top cancer center, even if only to get a second opinion. When you are dealing with a matter of life or death, there is absolutely no substitute for a proper diagnosis and the latest and greatest cancer knowledge. I was soooo lucky that I had Jeremy and Shannon as my "guardian angels" because I never would have recognized or understood this point without them. And I know that right now they are probably opening a bottle of wine, pouring themselves a glass, shouting "Hallelujah!" and toasting the fact that this point finally sunk into my thick, stubborn head. I can hear their glasses clinking all the way from here! :)
There were two thoughts that came to mind when I read Bern's email:
1) The NY Times article that I mentioned in my blog entry last weekend spoke at length about the varying degrees of expertise for cancer treatment that exist in different parts of the country. I think that Bernadette's case speaks volumes about this very point. York Pennsylvania is a small town (population is about 40K). The nearest big town is Philadelphia, but that is almost 2 hours away. I can understand why Bernadette, with 5 children (one of whom was a newborn baby when she was first diagnosed,) chose to be treated at a local hospital. I cannot imagine driving 4 hours round-trip every day for appointments when there are children left at home to care for -- and I only have two! But it's especially hard to imagine making a 4-hour trip when the benefits of traveling that far are not totally clear. Which leads me to my next point...
2) The average person has no clue how to evaluate the differences in medical care that exist in this country. In fact, the average person (e.g., Bern and myself) doesn't even realize that there ARE differences. This is why I am so eternally grateful to Jeremy and Shannon who relentlessly and adamantly refused to allow me to be treated at the local community hospital here in Marin without at least getting a second opinion from doctors at UCSF. Jeremy and Shannon both did their medical training and worked at Northwestern University in Chicago and so they are intimately familiar with the level of expertise that is gained in these high-volume teaching universities. When I was first diagnosed, I had no clue which direction to turn. As far as I could tell, the doctors here in Marin were as good as any. They seemed to know what they were doing and the thought of seeking second opinions was overwhelming to both Pete and I. Do we really need a second opinion -- the doctors here seem so confident in their recommendations? Where should we go to get it? Is UCSF a "top cancer center" or should we consider someplace like MD Anderson in Houston? Shouldn't I just start treatment as quickly as possible? I feel like I have a ticking time bomb inside of me!!
But Jeremy and Shannon did not give in. In almost every conversation that we had (and we had hundreds in the couple weeks after I was diagnosed!) they absolutely insisted that I seek a second opinion at UCSF and I am so glad that they did. As it turns out, the Marin doctors that I have had (Dr Poen and Dr Gullion) have both been wonderful. They are clearly on the cutting edge of treatment and have been in complete agreement with the doctors at UCSF. But I think that my situation is probably unique relative to other parts of the country. We live very close to two top-notch universities (UCSF is 10 miles away and Stanford is about 40 miles) and so many of the doctors who come to Marin hark from these top teaching centers (Dr Gullion worked at UCSF for 20 years and Dr Poen headed up Stanford's radiation oncology group.) I am sure that the same is not true for most other small towns in America. If nothing else, doctors in a small town or in a community hospital setting, by definition, do not see the same number of cases that doctors at a high-volume center see. That is why I so adamantly wanted my surgery to be done by my surgeon at UCSF. Dr Garcia-Aguilar has performed literally hundreds of my exact surgery, whereas the surgeons in Marin see only a fraction of this. As my friend, Michael, told me, "The skill of the surgeon can make or break whether you survive this cancer or not." And there is only one way for a surgeon to become skilled at surgery: practice, practice, practice.
Needless to say, Bern has "fired" her York doctors and is now scrambling to find top breast cancer experts (if you know of any, please shoot me an email!) In the meantime, she is being treated at John Hopkins and has a whole new outlook on life. As you may or may not know, breast cancer (even stage 4 as Bern's is) is much more treatable than lung cancer. There are woman who live for years and years with metastatic breast cancer, but the same is not true for lung cancer. And so I can sense that her fighting spirit is back with full-force and she is embracing life as never before.
The moral of this whole story is that if you or someone you love receives a cancer diagnosis, the single best thing you can do is to be seen by doctors at a top cancer center, even if only to get a second opinion. When you are dealing with a matter of life or death, there is absolutely no substitute for a proper diagnosis and the latest and greatest cancer knowledge. I was soooo lucky that I had Jeremy and Shannon as my "guardian angels" because I never would have recognized or understood this point without them. And I know that right now they are probably opening a bottle of wine, pouring themselves a glass, shouting "Hallelujah!" and toasting the fact that this point finally sunk into my thick, stubborn head. I can hear their glasses clinking all the way from here! :)
Stay the Course
It has been quite a week...lots of things to write about (almost TOO much in fact -- my head is spinning.) For now, though, let me share the update on my doctor's appointment and I'll write about the other stuff in a separate entry...
So I met with Dr Gullion on Thursday. The night before, though, I had a long conversation with my neighbor Michael (the one who is a GI oncologist at UCSF). I will weave their comments together below since they are very related:
1. I shared with both Michael and Dr Gullion the fact that I had the really weird hand cramps last week. I thought that this was all part of what they call "neuropathy", but both Michael and Dr G think that the cramps are actually due to an eletrolyte imbalance, not neuropathy. Dr G decided to add tests of my calcium and magnesium levels to the blood work that I am having done on Saturday to check my levels of each of these. I'm not sure what the "fix" is for this other than Dr G said I need to drink lots of Gatorade next week.
2. I also talked with both of them about the chest pains that I have been having. This is really the only symptom that still remains and at this point it's pretty mild. In fact, I was able to go to the gym today and ran a couple miles. But the cramps were bad enough last week to be pretty scary for me and so I wanted to get their advice. Michael thinks that the chest cramps are actually due to the 5-FU drug, not the Oxolyplatin (I assumed that it was the Oxolyplatin because I didn't have anything like this when I was on 5-FU in the beginning.) Michael said that there are some "anti-spasm" drugs that we can try to see if that helps to control the cramping, but first he recommended that I have an EKG stress test done in order to make sure that my heart is doing okay. Dr G totally agreed and I am going in on Monday morning before my chemo appointment to be tested. If everything looks okay, the cardiologist told me today that he will give the "green light" for me to continue chemo, which I guess is fine by me...I told him that I will have an easier time accepting the chemo each week if I know that I am not doing permanent damage to my heart.
3. When I mentioned to Michael that Dr G has been giving me an infusion of calcium-magnesium during each chemo (to help prevent neuropathy) Michael grew quite alarmed. Apparently, there is some extremely recent (within the last week) research which shows that adding this to the chemo cocktail actually makes Oxolyplatin less effective. So while it reduces the neuropathy, it also makes the treatment less powerful. Michael said that UCSF has completely stopped giving cal-mag with each treatment because the research results were so statistically significant. He seemed quite convinced that Dr G would not know of this research and offered to have a phone call with him. Of course, this made me panic. I was thinking "Oh my God, I need to be at UCSF!!!! Thank God I have Michael as my advisor!" But luckily, Dr G was ALL OVER IT! Not only did he know about the study, but apparently the Marin Cancer Center was part of the study. He said that he has also discontinued this part of the treatment for every patient undergoing FOLFOX and so I won't be getting this on Monday. The downside is that I'll likely have even more severe neuropathy, but at least the treatment will be able to do it's job properly.
4. In the end, Dr G said that he really, really wants me to do more doses of FOLFOX. He said that FOLFIRI is too "unproven" (Michael agreed) and that FOLFOX is my best bet. I'll do the EKG stress test first to make sure that my heart is still okay, but assuming that all is fine, he really, really wants for me to stay the course.
I think that I am slowly accepting the fact that I am just going to feel like total crap for the next 3 months and that I need to recalibrate my expectations. In fact, this is exactly what Michael told me on the phone. When I said to him, "Michael, this chemo just doesn't feel right. I feel really, really awful." His reply was, "Julie, I am not surprised. You are not supposed to feel normal. These are really powerful drugs." Oh.
So while the thought of having to "stay the course" for another 12 weeks makes me sooooooo sad (I think that part of me was hoping that Dr G would say, "Oh my! We need to get you off these drugs as quickly as possible!"), at least it helps that I am feeling a bit better this week. And so, if I can just stay focused on the fact that my body really will heal after all of this is over it will be easier for me to make it through each "hell week" (as my friend, Jan, has officially dubbed them.) It's just so damn hard in the moment because I really do feel like I have been poisoned and that I am going to die and it's such a scary feeling!!
In fact, I was thinking about it today and realizing that the fear that I have is just another example of the mind-body connection I have written about in the past....my body is literally being poisoned and so my mind panics because it can sense that things are not right. I told Pete that I would almost prefer to be completely knocked out for a few days so that I don't have to deal with the emotional stress and mind games on top of the physical pain, but I realize that that would be way too scary for the kids and so I just need to find some way to deal. I decided that I am going to schedule more guided imagery appointments -- I am hoping that they will help me to stay focused.
So that's the latest and greatest. Stress test is Monday at 9:45am and then, assuming all goes well, I walk across the street to have my third infusion of bitchy-spawn-killing drugs.
So I met with Dr Gullion on Thursday. The night before, though, I had a long conversation with my neighbor Michael (the one who is a GI oncologist at UCSF). I will weave their comments together below since they are very related:
1. I shared with both Michael and Dr Gullion the fact that I had the really weird hand cramps last week. I thought that this was all part of what they call "neuropathy", but both Michael and Dr G think that the cramps are actually due to an eletrolyte imbalance, not neuropathy. Dr G decided to add tests of my calcium and magnesium levels to the blood work that I am having done on Saturday to check my levels of each of these. I'm not sure what the "fix" is for this other than Dr G said I need to drink lots of Gatorade next week.
2. I also talked with both of them about the chest pains that I have been having. This is really the only symptom that still remains and at this point it's pretty mild. In fact, I was able to go to the gym today and ran a couple miles. But the cramps were bad enough last week to be pretty scary for me and so I wanted to get their advice. Michael thinks that the chest cramps are actually due to the 5-FU drug, not the Oxolyplatin (I assumed that it was the Oxolyplatin because I didn't have anything like this when I was on 5-FU in the beginning.) Michael said that there are some "anti-spasm" drugs that we can try to see if that helps to control the cramping, but first he recommended that I have an EKG stress test done in order to make sure that my heart is doing okay. Dr G totally agreed and I am going in on Monday morning before my chemo appointment to be tested. If everything looks okay, the cardiologist told me today that he will give the "green light" for me to continue chemo, which I guess is fine by me...I told him that I will have an easier time accepting the chemo each week if I know that I am not doing permanent damage to my heart.
3. When I mentioned to Michael that Dr G has been giving me an infusion of calcium-magnesium during each chemo (to help prevent neuropathy) Michael grew quite alarmed. Apparently, there is some extremely recent (within the last week) research which shows that adding this to the chemo cocktail actually makes Oxolyplatin less effective. So while it reduces the neuropathy, it also makes the treatment less powerful. Michael said that UCSF has completely stopped giving cal-mag with each treatment because the research results were so statistically significant. He seemed quite convinced that Dr G would not know of this research and offered to have a phone call with him. Of course, this made me panic. I was thinking "Oh my God, I need to be at UCSF!!!! Thank God I have Michael as my advisor!" But luckily, Dr G was ALL OVER IT! Not only did he know about the study, but apparently the Marin Cancer Center was part of the study. He said that he has also discontinued this part of the treatment for every patient undergoing FOLFOX and so I won't be getting this on Monday. The downside is that I'll likely have even more severe neuropathy, but at least the treatment will be able to do it's job properly.
4. In the end, Dr G said that he really, really wants me to do more doses of FOLFOX. He said that FOLFIRI is too "unproven" (Michael agreed) and that FOLFOX is my best bet. I'll do the EKG stress test first to make sure that my heart is still okay, but assuming that all is fine, he really, really wants for me to stay the course.
I think that I am slowly accepting the fact that I am just going to feel like total crap for the next 3 months and that I need to recalibrate my expectations. In fact, this is exactly what Michael told me on the phone. When I said to him, "Michael, this chemo just doesn't feel right. I feel really, really awful." His reply was, "Julie, I am not surprised. You are not supposed to feel normal. These are really powerful drugs." Oh.
So while the thought of having to "stay the course" for another 12 weeks makes me sooooooo sad (I think that part of me was hoping that Dr G would say, "Oh my! We need to get you off these drugs as quickly as possible!"), at least it helps that I am feeling a bit better this week. And so, if I can just stay focused on the fact that my body really will heal after all of this is over it will be easier for me to make it through each "hell week" (as my friend, Jan, has officially dubbed them.) It's just so damn hard in the moment because I really do feel like I have been poisoned and that I am going to die and it's such a scary feeling!!
In fact, I was thinking about it today and realizing that the fear that I have is just another example of the mind-body connection I have written about in the past....my body is literally being poisoned and so my mind panics because it can sense that things are not right. I told Pete that I would almost prefer to be completely knocked out for a few days so that I don't have to deal with the emotional stress and mind games on top of the physical pain, but I realize that that would be way too scary for the kids and so I just need to find some way to deal. I decided that I am going to schedule more guided imagery appointments -- I am hoping that they will help me to stay focused.
So that's the latest and greatest. Stress test is Monday at 9:45am and then, assuming all goes well, I walk across the street to have my third infusion of bitchy-spawn-killing drugs.
Wednesday, August 1, 2007
How Safe Is Your Community?
If you are interested in learning about environmental conditions, such as chemicals, radiation, and hazardous waste, that affect the community in which you live check out one of these two sites:
1) Envirofacts
2) Scorecard
The sites integrate environmental information from hundreds of databases and allow you to enter your zip code and see how safe your own community is. The Scorecard site allows you to compare the safety of your community with others in the US and on Envirofacts, you can see which companies in the community around you are dumping the most hazardous waste into the environment where you live. Hmmm....might be more info than you really want to know....or, who knows, maybe it will inspire you to switch to a competitor who is more environmentally sensitive.
1) Envirofacts
2) Scorecard
The sites integrate environmental information from hundreds of databases and allow you to enter your zip code and see how safe your own community is. The Scorecard site allows you to compare the safety of your community with others in the US and on Envirofacts, you can see which companies in the community around you are dumping the most hazardous waste into the environment where you live. Hmmm....might be more info than you really want to know....or, who knows, maybe it will inspire you to switch to a competitor who is more environmentally sensitive.
Truly Blessed
I have been keeping up with my friend, Bonnie's, fight against leukemia through her blog site. I have not been able to visit her (or even talk with her) since she was admitted to the hospital -- I have either felt too ill myself or she has not been feeling well and not taking visitors or phone calls. And so I have resigned myself to staying connected, even in the smallest way, by checking her blog religiously. Unfortunately, I read yesterday that she has contracted a fungal infection in her lungs. This is not really surprising since she has practically zero white blood cells (my count was "1.5" -- which was the very low end of normal -- and hers is apparently ".01".) She has been in the hospital now for 27 days and, any day now, her body is supposed to start making white blood cells again. Needless to say, we are all hoping and praying that her new white blood cells will be strong enough to knock this crap out of this infection, but in the meantime, the infection (and the drugs to relieve her pain) have completely zapped her energy. Apparently, she is saving all of her strength for visits from her husband and two daughters, which I can completely understand.
As I sit here now thinking about Bonnie, I can't help but look at my life through an entirely different lens. I have no right to complain about anything; I am blessed. Yes, the chemo is doing wacky things to my body and completely knocking me out every other week, but at least I get to be "knocked out" in the comfort of my own home, surrounded by my family, within earshot of my children's laughter. During my bad days, I might stay in bed all day but I am able to snuggle under warm, fresh-smelling blankets, surrounded by all the things which make my house my home. And at night -- even on my bad days -- I am able to tuck my children into bed and hear their last thoughts for the day, and smell their sweet, fresh-from-the-bath "children smells", and feel the softness of their jammies against my cheek, and share in their prayers. And I am able to crawl into my own bed and snuggle up next to my amazing husband. Sometimes we talk and he offers me words of encouragement and wisdom or he makes me laugh with his goofy sense of humor and sometimes we just close our eyes and fall asleep. Either way, I am able to rest more soundly knowing that he is next to me. And in the morning, I awake to the sounds of birds chirping outside my bedroom window or to the sound of my children scurrying around outside my bedroom door as they begin the day. And this is what happens on my bad days. On my good days -- like today -- life is almost normal again. I am able to go to the farmer's market and take a long walk through the hills and pick blackberries with my kids. Were it not for a couple minor, lingering symptoms I could almost pretend that my life was no different than the other Mill Valley moms on days like this. But, most importantly, on good days like this the skies are clear and I can almost see to the very top of my mountain. And I know that once I get there, life will be normal again (or at least as normal as life can be after cancer.) And so I realize that I have no right to complain. In this wacky, crazy life of mine, I am truly blessed.
As I sit here now thinking about Bonnie, I can't help but look at my life through an entirely different lens. I have no right to complain about anything; I am blessed. Yes, the chemo is doing wacky things to my body and completely knocking me out every other week, but at least I get to be "knocked out" in the comfort of my own home, surrounded by my family, within earshot of my children's laughter. During my bad days, I might stay in bed all day but I am able to snuggle under warm, fresh-smelling blankets, surrounded by all the things which make my house my home. And at night -- even on my bad days -- I am able to tuck my children into bed and hear their last thoughts for the day, and smell their sweet, fresh-from-the-bath "children smells", and feel the softness of their jammies against my cheek, and share in their prayers. And I am able to crawl into my own bed and snuggle up next to my amazing husband. Sometimes we talk and he offers me words of encouragement and wisdom or he makes me laugh with his goofy sense of humor and sometimes we just close our eyes and fall asleep. Either way, I am able to rest more soundly knowing that he is next to me. And in the morning, I awake to the sounds of birds chirping outside my bedroom window or to the sound of my children scurrying around outside my bedroom door as they begin the day. And this is what happens on my bad days. On my good days -- like today -- life is almost normal again. I am able to go to the farmer's market and take a long walk through the hills and pick blackberries with my kids. Were it not for a couple minor, lingering symptoms I could almost pretend that my life was no different than the other Mill Valley moms on days like this. But, most importantly, on good days like this the skies are clear and I can almost see to the very top of my mountain. And I know that once I get there, life will be normal again (or at least as normal as life can be after cancer.) And so I realize that I have no right to complain. In this wacky, crazy life of mine, I am truly blessed.
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