My dear friend Cindy just sent this along in an email. I love it so I am posting it so that you can read it too.
"You may know this already, but in some native traditions, the head is shaved as part of a ritual. It is a symbol of shedding a layer. The ritual is used when someone is releasing or transforming a part of themselves from the past and stepping through a new gateway to the future, a metamorphosis. Even with the uncertainty of the future, you look beautiful and empowered as you step through this gateway."
Thanks Cin-Cin. Isn't this a beautiful thought and image?
Tuesday, May 19, 2009
Monday, May 18, 2009
OK I get it I need to blog more!
So I haven't blogged since I started my radiation in April. I am so pleased to report that after THREE treatments I was virtually pain free on the right side. I am so impressed with how well area specific radiation works as well as the staff at Evergreen Hospital. You walk into EHMC and there are posters (featuring my favorite surgeon Dr. Marion Johnson) with their tag line, "Exceptional people, exceptional care." I think they nailed it on this one. My experience at EHMC for radiation was phenomenal.
Well after having such relief with three treatments on the right side I thought let's do the left. Matt and I went in to consult with Dr. Eric Taylor and my new hip/pelvis/femur MRI on the left. Unfortunately, the cancer on the left is diffuse and it would be very difficult for Dr. Taylor to "hit" the correct spot. For this reason, as well as the fact that I would be starting chemotherapy soon, he could not radiate on the left side. My bone marrow just couldn't take it before embarking on chemotherapy. I think Dr. Taylor was the most disappointed in the room. The hips, pelvis and femurs really are the largest sources of bone marrow production in the body. One side was all I could handle before a course of chemotherapy but the pain relief on the right was worth it.
I graduated from radiation on April 15th and was off to Philadelphia for the Living Beyond Breast Cancer meeting devoted to women with metastatic breast cancer. It was very informative and Elizabeth Edwards spoke. She is an amazing woman to hear speak. I would highly recommend her new book, "Resilience" for pondering many of life's issues beyond cancer.
Once I returned from Philadelphia we had a planning meeting with Dr. K on a Tuesday. I was going to start a regimen of Abraxane (a chemotherapy) and Avastin (a biotherapy) and keep going with my monthly Zometa (a bone builder.) I would have 3 weeks on and one week off getting my treatments on Fridays. It was a little confusing at first because week #1 is 2 drugs, week #2 is 1 drug and week #3 is 3 drugs then week #4 off.
Once we got that on the calendar my sister-in-law went to work on an schedule for assistance. Thank you to everyone who answered the call for driving and picking up the girls, taking them to parties and school events, folding laundry, cleaning, helping me here at the house to not get frustrated with being home alone. You have all offered to be "chemo-buddies" so Matt doesn't have to take the day off work for weekly treatments. Also, I have to mention the meals that just keep on arriving and they are so good.
Everyone seems to have something that they can do to help our family through this and you are all so generous with your time and energy. Most importantly, I would like to personally thank everyone, especially family, who have taken some of the burden off of Matt's plate. For the first time during this 22 month roller coaster ride I see Matt being able to do somethings for himself. Even if it is just to sit and watch a hockey game it is some time just for him where he can have some down time. With your assistance Matt can go to work, with less worry, and that is so important. I thank you from the bottom of my heart for all your help. We have an amazing village!!!
So where are we now? I did 2 treatments and then went in for #3 and was neutropenic. This is when your white blood cells are too low and the on-call doctor decided that I could not have chemotherapy that day. I have had a week and a half to get my WBC back up. We will know on Wednesday the 2oth. Matt has been feeding me fish, and green leafy vegetables and I have been focusing on a healthy WBC and my bone marrow working again. Our lives our hopelessly devoted to hand sanitizer and staying away from sick people (especially kids.) On that note, we really appreciate your candor when someone in your family is coming down with something. You know we would love to see you and the girls crave the play-dates but thanks for being aware of what a cold or the flu means at our house.
We should be able to start round #2 on Friday the 22nd. Keep your fingers crossed. Just as the Abraxane manual said my hair began to fall out 14 days after my first treatment. At first is was just a little bit. By yesterday there was so much hair in the shower drain it filled a gallon zip-lock bag. We decided to shave it off. Petra, my hairstylist/next door neighbor (A Sense of Style in Woodinville is where she works) came over with the clippers and cut it off. She tried to give me a sassy, short do but as I knew it was too far gone so I got a buzz cut. Mila took pictures and we made it a fun day and finished up by reading, "The Best Nest." As any parent knows, Mr. and Mrs. Bird need 'man hair' for their best nest. The birds around here are going to have wall-to-wall carpeting in their nests.
Thanks for the emails, phone calls and FaceBook notes of support about being bald. It is a really odd thing and I never really thought much of my hair until I saw it flying away into the yard. Your support means a lot. It is one of those weird life situations that is scary and liberating at the same time. Matt said, "It's very G.I. Jane" and I am good with that. Too bad the abs don't come with the buzz cut!
Well after having such relief with three treatments on the right side I thought let's do the left. Matt and I went in to consult with Dr. Eric Taylor and my new hip/pelvis/femur MRI on the left. Unfortunately, the cancer on the left is diffuse and it would be very difficult for Dr. Taylor to "hit" the correct spot. For this reason, as well as the fact that I would be starting chemotherapy soon, he could not radiate on the left side. My bone marrow just couldn't take it before embarking on chemotherapy. I think Dr. Taylor was the most disappointed in the room. The hips, pelvis and femurs really are the largest sources of bone marrow production in the body. One side was all I could handle before a course of chemotherapy but the pain relief on the right was worth it.
I graduated from radiation on April 15th and was off to Philadelphia for the Living Beyond Breast Cancer meeting devoted to women with metastatic breast cancer. It was very informative and Elizabeth Edwards spoke. She is an amazing woman to hear speak. I would highly recommend her new book, "Resilience" for pondering many of life's issues beyond cancer.
Once I returned from Philadelphia we had a planning meeting with Dr. K on a Tuesday. I was going to start a regimen of Abraxane (a chemotherapy) and Avastin (a biotherapy) and keep going with my monthly Zometa (a bone builder.) I would have 3 weeks on and one week off getting my treatments on Fridays. It was a little confusing at first because week #1 is 2 drugs, week #2 is 1 drug and week #3 is 3 drugs then week #4 off.
Once we got that on the calendar my sister-in-law went to work on an schedule for assistance. Thank you to everyone who answered the call for driving and picking up the girls, taking them to parties and school events, folding laundry, cleaning, helping me here at the house to not get frustrated with being home alone. You have all offered to be "chemo-buddies" so Matt doesn't have to take the day off work for weekly treatments. Also, I have to mention the meals that just keep on arriving and they are so good.
Everyone seems to have something that they can do to help our family through this and you are all so generous with your time and energy. Most importantly, I would like to personally thank everyone, especially family, who have taken some of the burden off of Matt's plate. For the first time during this 22 month roller coaster ride I see Matt being able to do somethings for himself. Even if it is just to sit and watch a hockey game it is some time just for him where he can have some down time. With your assistance Matt can go to work, with less worry, and that is so important. I thank you from the bottom of my heart for all your help. We have an amazing village!!!
So where are we now? I did 2 treatments and then went in for #3 and was neutropenic. This is when your white blood cells are too low and the on-call doctor decided that I could not have chemotherapy that day. I have had a week and a half to get my WBC back up. We will know on Wednesday the 2oth. Matt has been feeding me fish, and green leafy vegetables and I have been focusing on a healthy WBC and my bone marrow working again. Our lives our hopelessly devoted to hand sanitizer and staying away from sick people (especially kids.) On that note, we really appreciate your candor when someone in your family is coming down with something. You know we would love to see you and the girls crave the play-dates but thanks for being aware of what a cold or the flu means at our house.
We should be able to start round #2 on Friday the 22nd. Keep your fingers crossed. Just as the Abraxane manual said my hair began to fall out 14 days after my first treatment. At first is was just a little bit. By yesterday there was so much hair in the shower drain it filled a gallon zip-lock bag. We decided to shave it off. Petra, my hairstylist/next door neighbor (A Sense of Style in Woodinville is where she works) came over with the clippers and cut it off. She tried to give me a sassy, short do but as I knew it was too far gone so I got a buzz cut. Mila took pictures and we made it a fun day and finished up by reading, "The Best Nest." As any parent knows, Mr. and Mrs. Bird need 'man hair' for their best nest. The birds around here are going to have wall-to-wall carpeting in their nests.
Thanks for the emails, phone calls and FaceBook notes of support about being bald. It is a really odd thing and I never really thought much of my hair until I saw it flying away into the yard. Your support means a lot. It is one of those weird life situations that is scary and liberating at the same time. Matt said, "It's very G.I. Jane" and I am good with that. Too bad the abs don't come with the buzz cut!
Sunday, April 5, 2009
Me & Shakira, our hips don't lie.
Well can't really say that I am on tonight on any night for that matter. What I can say is that Shakira and I have something in common (I know it's hard to believe the Colombian bombshell and me) but it is true--OUR HIPS DON"T LIE.
Shakira had this amazing control over her hips, any direction the most minute of movements. Me, on the other hand, I can trip over a 12 inch piece of ribbon. As many of you readers know I came back form our cruise in February and I caught my heel on a jet way disembarking the plane. I felt the pain and thought that I had maybe broken my hip. About a month later after the pain just kept getting worse I had an MRI which did not show a fracture but instead showed the the disease in my hip had awakened from its slumber and was know growing like crazy. Then I fell, literally tripping on a piece of ribbon. I really understood that I was going downhill at this point. My acceptance-o-meter was on that day.
So now we are dealing with two different issues 1) The elevated DHEA & Estrogen levels 2) The new hip pain that is beyond intense. While the endocrinologist and Dr. K are working on the endocrine issue (which is probably what the hip is active again because it needs estrogen to grow) we now have this debilitating pain problem. It is affecting my quality of life in a negative way.
Dr. K referred me to Dr. Eric Taylor at Evergreen. I went in to see him and much to my delight he told me in the first ten seconds where he did his undergrad, Med school, internship and residency. He told me how many patients he had treated and that he sat on the American Cancer Society Board for 8 out of the last 9 years. I loved this approach so that I did have to ask any of these questions. Matt swears that Dr. K must have called to warn him what a pain I am. I think it is just the way he does things.
He immediately showed us axial, sagittal and coronal view of my hip/pelvis/femur. It was amazing to correlate the pain with where the disease is at its worst. He showed me everything and I was very impressed with the breadth of his knowledge. His idea, get me in for 10 sessions as soon as possible. This way I would be able to fly to Philadelphia for the Advanced Breast Cancer Conference (where Elizabeth Edwards is the keynote speaker) in relative comfort. I asked the regular questions, "Would it hurt?" and "Would it take a long time?" No to both. They actually got my in for my first treatment the same day. The staff is so incredibly, organized that I left extremely impressed. I have 8 more to go. You are only in the machine (which is a $4 million piece of equipment) for about 4 minutes. $1 million per minute. That's a great value.
So lots of things have changed, I have my first tattoo. Granted it is only a pinprick to align to radiation beams but it is a tat nonetheless. Additionally, Dr. Taylor talked me into getting a cane. If only to let people know that I do have some sort of injury and that they should give me a wide berth. Matt had been asking me to get one for awhile but isn't the expert always from out of town? I sort of dig my little cane although it is in need of some serious bling. Plain black for match everything in my wardrobe. Would you expect anything less?
So many of you may be wondering what this has to do with the Colombian Pop Icon Shakira and me. Well, in her hit single "Hips Don't Lie" the lyrics read: "And I'm on tonight, you know my hips don't lie, and I'm starting to feel it's right. All the attraction, the tension, don't you see baby this is perfection."
I suppose simply put that after these 10 sessions my hips won't lie. If I can walk and roll over without pain then this is starting to feel right. The ease and quickness and paucity of side affects is the attraction. If I can start using less narcotic to handle the pain that this is even more attractive. The tension I can only attribute to the band the put around my feet to keep them still.
See baby, this is perfection.
A big thank you to everyone that has come to our assistance. My treatments are every day and this is the kid's Spring Break! I feel pretty out of it when I return home so we needed some help. You all came out of the woodwork to help. This, too, is perfection. We have amazing friends and family!
Shakira had this amazing control over her hips, any direction the most minute of movements. Me, on the other hand, I can trip over a 12 inch piece of ribbon. As many of you readers know I came back form our cruise in February and I caught my heel on a jet way disembarking the plane. I felt the pain and thought that I had maybe broken my hip. About a month later after the pain just kept getting worse I had an MRI which did not show a fracture but instead showed the the disease in my hip had awakened from its slumber and was know growing like crazy. Then I fell, literally tripping on a piece of ribbon. I really understood that I was going downhill at this point. My acceptance-o-meter was on that day.
So now we are dealing with two different issues 1) The elevated DHEA & Estrogen levels 2) The new hip pain that is beyond intense. While the endocrinologist and Dr. K are working on the endocrine issue (which is probably what the hip is active again because it needs estrogen to grow) we now have this debilitating pain problem. It is affecting my quality of life in a negative way.
Dr. K referred me to Dr. Eric Taylor at Evergreen. I went in to see him and much to my delight he told me in the first ten seconds where he did his undergrad, Med school, internship and residency. He told me how many patients he had treated and that he sat on the American Cancer Society Board for 8 out of the last 9 years. I loved this approach so that I did have to ask any of these questions. Matt swears that Dr. K must have called to warn him what a pain I am. I think it is just the way he does things.
He immediately showed us axial, sagittal and coronal view of my hip/pelvis/femur. It was amazing to correlate the pain with where the disease is at its worst. He showed me everything and I was very impressed with the breadth of his knowledge. His idea, get me in for 10 sessions as soon as possible. This way I would be able to fly to Philadelphia for the Advanced Breast Cancer Conference (where Elizabeth Edwards is the keynote speaker) in relative comfort. I asked the regular questions, "Would it hurt?" and "Would it take a long time?" No to both. They actually got my in for my first treatment the same day. The staff is so incredibly, organized that I left extremely impressed. I have 8 more to go. You are only in the machine (which is a $4 million piece of equipment) for about 4 minutes. $1 million per minute. That's a great value.
So lots of things have changed, I have my first tattoo. Granted it is only a pinprick to align to radiation beams but it is a tat nonetheless. Additionally, Dr. Taylor talked me into getting a cane. If only to let people know that I do have some sort of injury and that they should give me a wide berth. Matt had been asking me to get one for awhile but isn't the expert always from out of town? I sort of dig my little cane although it is in need of some serious bling. Plain black for match everything in my wardrobe. Would you expect anything less?
So many of you may be wondering what this has to do with the Colombian Pop Icon Shakira and me. Well, in her hit single "Hips Don't Lie" the lyrics read: "And I'm on tonight, you know my hips don't lie, and I'm starting to feel it's right. All the attraction, the tension, don't you see baby this is perfection."
I suppose simply put that after these 10 sessions my hips won't lie. If I can walk and roll over without pain then this is starting to feel right. The ease and quickness and paucity of side affects is the attraction. If I can start using less narcotic to handle the pain that this is even more attractive. The tension I can only attribute to the band the put around my feet to keep them still.
See baby, this is perfection.
A big thank you to everyone that has come to our assistance. My treatments are every day and this is the kid's Spring Break! I feel pretty out of it when I return home so we needed some help. You all came out of the woodwork to help. This, too, is perfection. We have amazing friends and family!
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