I feel okay, as long as I'm sitting perfectly still. Sigh. I'm to the point where I count the hours until my next pain pill, and rolling, sitting, standing, or shifting positions HURT.
This too shall pass.
Saturday, March 03, 2007
So far so good
Well, I was able to sleep moderately well last night, and that is a very good thing. A good rest is a cure-all for most things, I'm finding! I was tired not only from the surgery, but also from lack of sleep the night before. Tessa had been feeling my anxiety over this procedure, I think, and woke up sobbing "Mama, Mama! Hold me!" which was just heartbreaking...and more than slightly exhausting, as she did this for at least three hours on Thursday night, finally falling asleep in my arms in our bed. My heart went out to her...but it gave me a little pity-party, too, because I, too, was tired and anxious and this didn't help.
Tessa is in a great mood today, however....I've showed her my hospital bracelet, and my bandages, and since these things are (unfortunately) quite familiar to her, I think she feels better about the situation now.
I am very, very tender right now, and can hardly move my left arm, but this should improve with time. I am up and about, but I'm forcing myself to stay in my PJs today to keep myself down. Still, I've been able to help put Frontline on the dog & cat (no more ticks - PLEASE!), to help with breakfast, and to play a bit with Tessa. Ryan is being incredibly kind and considerate (and just finished vacuuming - boy is it sexy when a man vacuums ;-) ) to me and is encouraging me to rest, but I can't just sit in bed all day, because then I REALLY feel sick!
In addition to tenderness/pain in my chest, I have a really sore throat from the breathing tube (what's the name for that thing again?). This too shall pass.
I think that Ryan & Tessa are going to the "Grossology" exhibit today or tomorrow, and Shep has put in his request for a trip to the dog park. Not bad, all things considered. It's certainly been worse, and if this is the worst of it, I'll be okay.
Many thanks and much love to my parents for watching Tessa so lovingly all day yesterday so that Ryan could care for me and so that Tessa didn't have to hang out at the hospital for hours on end.
Love,
Kristina
Tessa is in a great mood today, however....I've showed her my hospital bracelet, and my bandages, and since these things are (unfortunately) quite familiar to her, I think she feels better about the situation now.
I am very, very tender right now, and can hardly move my left arm, but this should improve with time. I am up and about, but I'm forcing myself to stay in my PJs today to keep myself down. Still, I've been able to help put Frontline on the dog & cat (no more ticks - PLEASE!), to help with breakfast, and to play a bit with Tessa. Ryan is being incredibly kind and considerate (and just finished vacuuming - boy is it sexy when a man vacuums ;-) ) to me and is encouraging me to rest, but I can't just sit in bed all day, because then I REALLY feel sick!
In addition to tenderness/pain in my chest, I have a really sore throat from the breathing tube (what's the name for that thing again?). This too shall pass.
I think that Ryan & Tessa are going to the "Grossology" exhibit today or tomorrow, and Shep has put in his request for a trip to the dog park. Not bad, all things considered. It's certainly been worse, and if this is the worst of it, I'll be okay.
Many thanks and much love to my parents for watching Tessa so lovingly all day yesterday so that Ryan could care for me and so that Tessa didn't have to hang out at the hospital for hours on end.
Love,
Kristina
Friday, March 02, 2007
Surgery # 7 Completed
I'm home!
The surgery went well, and I am now home and resting. I haven't seen the results yet as they're hidden under a Goliath of a white cotton post-surgical bra, but I am hopeful. I feel okay; I definitely won't be going out dancing any time soon but I've experienced much worse and I'm hopeful for a quick recovery.
It is good to be home.
The surgery went well, and I am now home and resting. I haven't seen the results yet as they're hidden under a Goliath of a white cotton post-surgical bra, but I am hopeful. I feel okay; I definitely won't be going out dancing any time soon but I've experienced much worse and I'm hopeful for a quick recovery.
It is good to be home.
Thursday, March 01, 2007
Okay, at least this time tomorrow it will be done!
Despite my bad attitude, I'm going about the preparations for surgery. The house is sort of in order (!), the freezer is full of food, childcare is lined up for pretty much all of next week, I bought some PJs that button up in the front, I made sure that Tessa got two great playdates today and some good 1:1 Mommy & Tessa time. I took the dog to the vet (because he got a tick - yuck), I did Herceptin....it's been quite a day.
My apologies to Beth who came over for a quiet coffee date (moms) and playdate (girls) and ended being swept up in my crazy afternoon! Thank you for understanding, Beth, and for watching Tessa so I could do the emergency vet run.
I'm tired and still haven't packed a hospital bag, but that's okay. I'm going to bed - I'll pack the bag tomorrow!
xoxo
Kristina
My apologies to Beth who came over for a quiet coffee date (moms) and playdate (girls) and ended being swept up in my crazy afternoon! Thank you for understanding, Beth, and for watching Tessa so I could do the emergency vet run.
I'm tired and still haven't packed a hospital bag, but that's okay. I'm going to bed - I'll pack the bag tomorrow!
xoxo
Kristina
Wednesday, February 28, 2007
bad attitude
I've got a bad attitude.
I just got off the phone with the plastic surgeon's office, and I was informed that I will not be able to drive for about a week and a half.
Wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.
In addition to the problems this causes with caring for Tessa (preschool, swim lessons) I'm thinking about grocery shopping, playdates, errands. I'm thinking about how on earth are the next two weeks going to look?
I am so, so, so tired of being a patient. I want to be done. I want to fast forward the hard parts. I want to feel strong again. I want to move ON!
I do a lot of visualizations to stay strong; I've been thinking a lot of playing on the beach in Hawaii with my family. In my image, Tessa and I are holding hands and running into the surf. We're laughing, my face is turned to watch hers delight with amazement. I'm wearing the itsy-bitsy bikini that I bought, feeling good about myself, but not thinking of my body at all, jsut thinking of the moment....of Tessa's laughter, the warm water, the sun on our skin, the sand under our toes, the delight in Tessa's eyes, the feeling of her small hand, so trusting, in mine. Of Ryan watching us, and smiling until his eyes twinkle, happy. In that moment, the surgery will be behind me, not looming over me as it is now.
But even the vision is not helping me today! Today I'm sad and scared and resentful. Harumph.
I just got off the phone with the plastic surgeon's office, and I was informed that I will not be able to drive for about a week and a half.
Wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.
In addition to the problems this causes with caring for Tessa (preschool, swim lessons) I'm thinking about grocery shopping, playdates, errands. I'm thinking about how on earth are the next two weeks going to look?
I am so, so, so tired of being a patient. I want to be done. I want to fast forward the hard parts. I want to feel strong again. I want to move ON!
I do a lot of visualizations to stay strong; I've been thinking a lot of playing on the beach in Hawaii with my family. In my image, Tessa and I are holding hands and running into the surf. We're laughing, my face is turned to watch hers delight with amazement. I'm wearing the itsy-bitsy bikini that I bought, feeling good about myself, but not thinking of my body at all, jsut thinking of the moment....of Tessa's laughter, the warm water, the sun on our skin, the sand under our toes, the delight in Tessa's eyes, the feeling of her small hand, so trusting, in mine. Of Ryan watching us, and smiling until his eyes twinkle, happy. In that moment, the surgery will be behind me, not looming over me as it is now.
But even the vision is not helping me today! Today I'm sad and scared and resentful. Harumph.
Countdown to surgery
My new survivor friend, Maria, in writing about her double mastectomy, said, "It's like I have been erased." Her words took my breath away.
Yes, that's what it's like. Looking down on my chest, and seeing that flat line, really is like being erased. It made me feel small, insignificant. Unsure.
On Friday, I will get one step further to filling in the painting that is me; instead of blank spots on my chest (like after mastectomy) or pencil drawings of general shapes (like now, partially reconstructed with placeholders) we will begin to paint color and form. It is very symbolic to me in my journey that I get breasts back, and it is important to me to restore myself to some semblance of normal.
Today at the gym, I saw the looks. Confusion, then sadness or kindness or both, when women in the showers saw my deformed chest. I hope that soon it will not be quite so obvious, to them or to me.
On Monday, Tessa and Jessie and I were together, and the girls wanted me to read them a story. I sat on the couch, a beautiful little girl on either side of me, and we pulled out the first book. I tried to put my arms around each girl so that she could lean on me as we read, and it was impossible. My left arm doesn't lift that high, and my expanded chest is simply too rock hard and painful to allow a snuggle. In that moment, when I felt so filled with joy at the simple pleasure of reading with inquisitive, playful, loving children...I became filled with anger that I can't even cuddle, that I can't move the way a normal person can move.
I can't lift my arm to do the most basic of things. Driving is painful when I need to do shoulder checks, when I need to make a sharp turn, or when I need to pass a snack or something to Tessa in the back seat. Taking things out of the top cupboards is an act of will and balancing. Dispensing shampoo from the bottle, hanging at eye level in the shower, means standing on my tiptoes to raise my whole body where my arm will not go, so that I can catch the pumped shampoo. Walking with Tessa means gritting my teeth when she wants to hold my hand and hop and skip because it hurts my body. I refuse to NOT hold her hand - she is my daughter! - but I am so, so tired of the aches it causes.
At night, I awaken many times because of the discomfort or pain of rolling over; I can't get comfortable, and so I'm always tired.
I am tired of these minor, yet many, compromises. I want to just be able to move freely. I don't need to be able to lift weights, or to hang from a bar, or to do a lap of butterfly...I just want to stop hurting from doing normal, everyday actions. Now, I do some of these things, but it hurts, and it tires me, and it pushes me to the edge. But what else would I do - not drive? Of course not. I push on through.
Surgery is one step towards fixing that. Hopefully removing the expander will remove much of the discomfort; hopefully they'll be able to remove scar tissue without further damaging anything and I will be able to lift my arm again. For these reasons, I am looking forward to surgery. BRING IT ON!
But I'm scared, too. This is my 7th surgery since diagnosis. I know what it feels like to recover. The anesthesia makes me feel lousy, the pain meds make me feel lousy, the incisions make me feel lousy. Drugs to sleep, drugs to kill pain...drugs that numb my mind and make me an incompetent mother for the time-being. I know all too well what that feels like, and I'm bitterly resentful of it. I'm resentful that I will not be able to hug Tessa, or to let her hop along beside me as she holds my hand, while I heal. That I will not be able to make healthy meals for us, that I will not be able to do much.
This too shall pass. I hope it passes quickly, because I can't help but dread it. It IS worth it to me in the end, but it is still a terrible burden.
If this surgery goes perfectly, there will be one more surgery (nipples) and then tattoos (aereolas). If things aren't perfect (the implant on the left could slip like the one on the right, or they may be different sizes, or pointing in different directions....the radiated side may perform differently than the non-radiated side, even if we do the same procedures) then we'll need another corrective surgery before nipples.
I pray that I'm done with all surgery by my two year diagnosis anniversary, June 1. Two years seems like ENOUGH. I'll still be doing Herceptin through September, and Femara through 2011, but isn't two years of surgery ENOUGH?!
In a month, I will be able to hold Tessa tight to my chest, without hurting. My port will be gone (part of this surgery) and her head won't bonk it, making me yelp. I should be able to sit with a child on either side of me, snuggled up on the couch to read a story. Maybe I'll even be able to push Tessa on the swings, yelling "Underdog!" and hearing her laugh as I push her ever higher, running beneath her as she soars through the air.
I can do this. I've done worse. But with each successive surgery, it gets a little harder. I know what I'm getting into.
Yes, that's what it's like. Looking down on my chest, and seeing that flat line, really is like being erased. It made me feel small, insignificant. Unsure.
On Friday, I will get one step further to filling in the painting that is me; instead of blank spots on my chest (like after mastectomy) or pencil drawings of general shapes (like now, partially reconstructed with placeholders) we will begin to paint color and form. It is very symbolic to me in my journey that I get breasts back, and it is important to me to restore myself to some semblance of normal.
Today at the gym, I saw the looks. Confusion, then sadness or kindness or both, when women in the showers saw my deformed chest. I hope that soon it will not be quite so obvious, to them or to me.
On Monday, Tessa and Jessie and I were together, and the girls wanted me to read them a story. I sat on the couch, a beautiful little girl on either side of me, and we pulled out the first book. I tried to put my arms around each girl so that she could lean on me as we read, and it was impossible. My left arm doesn't lift that high, and my expanded chest is simply too rock hard and painful to allow a snuggle. In that moment, when I felt so filled with joy at the simple pleasure of reading with inquisitive, playful, loving children...I became filled with anger that I can't even cuddle, that I can't move the way a normal person can move.
I can't lift my arm to do the most basic of things. Driving is painful when I need to do shoulder checks, when I need to make a sharp turn, or when I need to pass a snack or something to Tessa in the back seat. Taking things out of the top cupboards is an act of will and balancing. Dispensing shampoo from the bottle, hanging at eye level in the shower, means standing on my tiptoes to raise my whole body where my arm will not go, so that I can catch the pumped shampoo. Walking with Tessa means gritting my teeth when she wants to hold my hand and hop and skip because it hurts my body. I refuse to NOT hold her hand - she is my daughter! - but I am so, so tired of the aches it causes.
At night, I awaken many times because of the discomfort or pain of rolling over; I can't get comfortable, and so I'm always tired.
I am tired of these minor, yet many, compromises. I want to just be able to move freely. I don't need to be able to lift weights, or to hang from a bar, or to do a lap of butterfly...I just want to stop hurting from doing normal, everyday actions. Now, I do some of these things, but it hurts, and it tires me, and it pushes me to the edge. But what else would I do - not drive? Of course not. I push on through.
Surgery is one step towards fixing that. Hopefully removing the expander will remove much of the discomfort; hopefully they'll be able to remove scar tissue without further damaging anything and I will be able to lift my arm again. For these reasons, I am looking forward to surgery. BRING IT ON!
But I'm scared, too. This is my 7th surgery since diagnosis. I know what it feels like to recover. The anesthesia makes me feel lousy, the pain meds make me feel lousy, the incisions make me feel lousy. Drugs to sleep, drugs to kill pain...drugs that numb my mind and make me an incompetent mother for the time-being. I know all too well what that feels like, and I'm bitterly resentful of it. I'm resentful that I will not be able to hug Tessa, or to let her hop along beside me as she holds my hand, while I heal. That I will not be able to make healthy meals for us, that I will not be able to do much.
This too shall pass. I hope it passes quickly, because I can't help but dread it. It IS worth it to me in the end, but it is still a terrible burden.
If this surgery goes perfectly, there will be one more surgery (nipples) and then tattoos (aereolas). If things aren't perfect (the implant on the left could slip like the one on the right, or they may be different sizes, or pointing in different directions....the radiated side may perform differently than the non-radiated side, even if we do the same procedures) then we'll need another corrective surgery before nipples.
I pray that I'm done with all surgery by my two year diagnosis anniversary, June 1. Two years seems like ENOUGH. I'll still be doing Herceptin through September, and Femara through 2011, but isn't two years of surgery ENOUGH?!
In a month, I will be able to hold Tessa tight to my chest, without hurting. My port will be gone (part of this surgery) and her head won't bonk it, making me yelp. I should be able to sit with a child on either side of me, snuggled up on the couch to read a story. Maybe I'll even be able to push Tessa on the swings, yelling "Underdog!" and hearing her laugh as I push her ever higher, running beneath her as she soars through the air.
I can do this. I've done worse. But with each successive surgery, it gets a little harder. I know what I'm getting into.
Friday, February 23, 2007
3-Day excitement; off to Orcas
Last night's 3-Day party left me even more inspired. I think that a number of friends who were undecided before the event actually decided to walk after hearing more about it, and I'm THRILLED by this news. On an altruistic note, I'm excited about the commitment to bringing in $2200 per walker towards the cause; on a selfish note, I'm just looking forward to walking and training with these wonderful women. Girls, we are going to have some serious FUN!
Today we're rushing around like mad getting ready to go to Orcas with Marisa and Max. Our family loves spending time with Marisa, and Shep is particularily excited to get a doggy playdate that lasts all weekend. Marisa's cabin is a little slice of heaven on earth, and we've been there so many times that it feels a bit like home to us...we love it. The sun is shining, and we're ready to go!
Tessa has a cough, but I am crossing my fingers that we're through the worst of it and it doesn't put a damper on her weekend (or ours!).
Okay, off to throw clothes in a bag and hit the road. Have a great weekend!
Love,
Kristina
Today we're rushing around like mad getting ready to go to Orcas with Marisa and Max. Our family loves spending time with Marisa, and Shep is particularily excited to get a doggy playdate that lasts all weekend. Marisa's cabin is a little slice of heaven on earth, and we've been there so many times that it feels a bit like home to us...we love it. The sun is shining, and we're ready to go!
Tessa has a cough, but I am crossing my fingers that we're through the worst of it and it doesn't put a damper on her weekend (or ours!).
Okay, off to throw clothes in a bag and hit the road. Have a great weekend!
Love,
Kristina
Wednesday, February 21, 2007
Excitement
I am starting to get really, really excited for the 3-Day. We are building a team of the most amazing people, and I am so honored to walk with these women. The team will be a mix of people returning from last year ("Team Kristina" members), friends who couldn't walk last year but are up for the challenge this year, friends of some of the other team members, and new survivor friends.
Right now, it looks like we will have perhaps five survivors on the team. When I look in these women's eyes, I see myself. They remind me why we're doing this.
We are going to kick some serious cancer a$$. I know that I'll go through the "how on earth will we ever do this" phase, but right now I'm in the "hmmm maybe more than 20 people will walk, and maybe we'll raise more than $60K this year...maybe I should shoot for $100K!" phase.
One day at a time. I'm just so delighted that so many friends have expressed an interest in doing this with me. I can't wait for the little party tomorrow. :-)
Kristina
Right now, it looks like we will have perhaps five survivors on the team. When I look in these women's eyes, I see myself. They remind me why we're doing this.
We are going to kick some serious cancer a$$. I know that I'll go through the "how on earth will we ever do this" phase, but right now I'm in the "hmmm maybe more than 20 people will walk, and maybe we'll raise more than $60K this year...maybe I should shoot for $100K!" phase.
One day at a time. I'm just so delighted that so many friends have expressed an interest in doing this with me. I can't wait for the little party tomorrow. :-)
Kristina
This week
Well, this week is going on at usual speed. Minor updates:
- Tessa has a cold. I've kept her from all kid-activities and the poor dear is dying to go hang out with her girlfriends...like mother like daughter on that one! Anyway, she's okay, but on Sunday she was up half of the night crying and coughing; nothing would soothe her. She's doing fine through the night now and it's settled into a "normal" cold; she is just coughing and sniffling during the day. No swimming lessons today because of that, and that makes her sad.
- I have committed to doing "I am the cure" with Komen. It was right for me. Twenty years from now, I'll look back at this time and know that I made a difference. The next six months will probably be crazy, but hey, it's me...so if it wasn't this, it would be something else! I know I'm spending my time on something valuable.
- Last night I went to a survivor's meeting at Gilda's Club, and I got a lot out of it. When I went over a year ago I just couldn't do it...other women's stories overwhelmed me. Now, I'm in a pretty good place, and hearing others actually helps me to deal with my own thoughts on recurrence etc. (Just so you know, that is ALWAYS in my head. I hear from other survivors that it will never go away. It's not a matter of having a good attitude, it's a matter of dealing with the facts, and being all too aware that recurrence is a regular part of this path for many women. I know several women in recurrence...it happens. The trick is to accept this possibility and not allow it to overwhelm me, and that's what talking about it does for me.) The women in the group are bright, articulate, brave, and strong, even when they are afraid. I will definitely go back. They meet monthly.
Tonight is my grandmother's 84th birthday party, and I'm looking forward to attending and celebrating her life with her and the rest of the family. Tomorrow is my wine, cheese and chocolate party (with the purpose of getting girlfriend time and talking about the 3-Day) and I'm looking forward to that quite a bit. But on that note...I'd better start cleaning my house. Time to run!
Love,
Kristina
- Tessa has a cold. I've kept her from all kid-activities and the poor dear is dying to go hang out with her girlfriends...like mother like daughter on that one! Anyway, she's okay, but on Sunday she was up half of the night crying and coughing; nothing would soothe her. She's doing fine through the night now and it's settled into a "normal" cold; she is just coughing and sniffling during the day. No swimming lessons today because of that, and that makes her sad.
- I have committed to doing "I am the cure" with Komen. It was right for me. Twenty years from now, I'll look back at this time and know that I made a difference. The next six months will probably be crazy, but hey, it's me...so if it wasn't this, it would be something else! I know I'm spending my time on something valuable.
- Last night I went to a survivor's meeting at Gilda's Club, and I got a lot out of it. When I went over a year ago I just couldn't do it...other women's stories overwhelmed me. Now, I'm in a pretty good place, and hearing others actually helps me to deal with my own thoughts on recurrence etc. (Just so you know, that is ALWAYS in my head. I hear from other survivors that it will never go away. It's not a matter of having a good attitude, it's a matter of dealing with the facts, and being all too aware that recurrence is a regular part of this path for many women. I know several women in recurrence...it happens. The trick is to accept this possibility and not allow it to overwhelm me, and that's what talking about it does for me.) The women in the group are bright, articulate, brave, and strong, even when they are afraid. I will definitely go back. They meet monthly.
Tonight is my grandmother's 84th birthday party, and I'm looking forward to attending and celebrating her life with her and the rest of the family. Tomorrow is my wine, cheese and chocolate party (with the purpose of getting girlfriend time and talking about the 3-Day) and I'm looking forward to that quite a bit. But on that note...I'd better start cleaning my house. Time to run!
Love,
Kristina
Monday, February 19, 2007
Okay maybe I should still do Herceptin?!
I'm confused...obviously!
I spoke to our insurance company today. Apparently they are only covering 90% of all Herceptin fees since July (when we switched companies) and the bill reflects the amount that is out of pocket until we hit our $2200 annual deductable.
This means that we owe $2200 from last year and haven't received that bill. We will also owe $2200 this year because I've continued Herceptin, but also because I'm slated for 2-3 more surgeries, and that will easily make me hit my out of pocket. Even if I quit Herceptin, I'd hit the $2200 deductable (which, by the way, I have no idea how we're going to pay) this year, and quitting Herceptin now wouldn't change that.
So, the money isn't part of the equation. It is a royal pain, but it's not part of the decision making process for Herceptin.
I now suspect that I will continue Herceptin through September, as planned. "Leave no stone unturned" is my motto. I know too many people dealing with recurrances right now to forget the message.
Yes, I know it sounds like I'm indecisive...but it's my blog, and I'm thinking it through...just that I have an audience!
Kristina
I spoke to our insurance company today. Apparently they are only covering 90% of all Herceptin fees since July (when we switched companies) and the bill reflects the amount that is out of pocket until we hit our $2200 annual deductable.
This means that we owe $2200 from last year and haven't received that bill. We will also owe $2200 this year because I've continued Herceptin, but also because I'm slated for 2-3 more surgeries, and that will easily make me hit my out of pocket. Even if I quit Herceptin, I'd hit the $2200 deductable (which, by the way, I have no idea how we're going to pay) this year, and quitting Herceptin now wouldn't change that.
So, the money isn't part of the equation. It is a royal pain, but it's not part of the decision making process for Herceptin.
I now suspect that I will continue Herceptin through September, as planned. "Leave no stone unturned" is my motto. I know too many people dealing with recurrances right now to forget the message.
Yes, I know it sounds like I'm indecisive...but it's my blog, and I'm thinking it through...just that I have an audience!
Kristina
Saturday, February 17, 2007
Time to end Herceptin?
In addition to my falling MUGA, I got another nasty surprise last week: a bill for $800 for my last Herceptin treatment. It seems that my insurance may no longer pay for Herceptin; I need to call them on Monday to figure it out. The insurance statement was for $19,000 (which, you may be surprised to hear, doesn't mean much to me - I get statements like this all the time, at least once a month...I have accrued hundreds of thousands of dollars worth of treatment by now) and "only" $800 wasn't covered, but since it was covered at 100% before I wonder if my insurance company will no longer support my second year of Herceptin treatment.
Sigh. We can not afford $800 (or more!) every 3 weeks until September...not even close.
I am starting to feel like the universe is telling me that I've had enough Herceptin. 12 months is standard, and I've had 17 months. I hate to avoid any possible cures, but since this one is a big unknown (the study on one year vs two isn't finished) I just can't afford to cough up that kind of cash.
In better news, Genentech has approved my story and submitted it for FDA approval. I hope to get called to a speaking engagment soon.
And in other news, the local Komen office has asked me to chair a major new initiative that is slated to be a part of Race for the Cure. It would be a major time commitment for me, and involve a lot of responsibility. I am currently debating whether I can be a great mom and stay sane AND do the initiative. Only time will tell, and I'm going to go through a logical process (mapping out what the commitment would look like) to make the decision, but I am hoping and praying that I can make it work. It is an important initiative, proven successful in other markets, and I would like to be the one to make it successful in Seattle. It would be a way to bring powerful messages to thousands of women....and in doing so, it might save women's lives. I would like to tie my name to that kind of thing; I'd be proud to finish such an accomplishment. But I am also aware of how spread thin I am right now....so I need to think about it further. If you're praying for me, please pray that I will do the right thing for myself, for the cure, and for my family.
Love,
Kristina
Sigh. We can not afford $800 (or more!) every 3 weeks until September...not even close.
I am starting to feel like the universe is telling me that I've had enough Herceptin. 12 months is standard, and I've had 17 months. I hate to avoid any possible cures, but since this one is a big unknown (the study on one year vs two isn't finished) I just can't afford to cough up that kind of cash.
In better news, Genentech has approved my story and submitted it for FDA approval. I hope to get called to a speaking engagment soon.
And in other news, the local Komen office has asked me to chair a major new initiative that is slated to be a part of Race for the Cure. It would be a major time commitment for me, and involve a lot of responsibility. I am currently debating whether I can be a great mom and stay sane AND do the initiative. Only time will tell, and I'm going to go through a logical process (mapping out what the commitment would look like) to make the decision, but I am hoping and praying that I can make it work. It is an important initiative, proven successful in other markets, and I would like to be the one to make it successful in Seattle. It would be a way to bring powerful messages to thousands of women....and in doing so, it might save women's lives. I would like to tie my name to that kind of thing; I'd be proud to finish such an accomplishment. But I am also aware of how spread thin I am right now....so I need to think about it further. If you're praying for me, please pray that I will do the right thing for myself, for the cure, and for my family.
Love,
Kristina
Thursday, February 15, 2007
CA 27.29 report; MUGA results
I forgot to report earlier:
CA 27.29 is a tumor marker in the blood that is elevated in the presence of breast cancer; when I was diagnosed it was at a 44 (40 and under is normal), and since my original surgery I've hovered around 17. It's currently (blood work last week) at 8. Good news! The marker is notoriously unreliable but trends can be important and I like this trend.
My MUGA (heart test) has dropped, however. Normal is above 50, and I've been at 64 since starting treatment. In the past three months my score dropped to 56, which is still in the normal range but a significant drop. I'll get retested in another 3 months. If my levels continue to drop I would need to consider discontinuing Herceptin, and I'm hoping that won't be the case, as I'm betting a lot on that drug and want to complete two years of it. However, the risk of low MUGA scores are heart attack and congestive heart failure, and I won't risk that if the numbers fall too far.
I guess I'll update in May!
CA 27.29 is a tumor marker in the blood that is elevated in the presence of breast cancer; when I was diagnosed it was at a 44 (40 and under is normal), and since my original surgery I've hovered around 17. It's currently (blood work last week) at 8. Good news! The marker is notoriously unreliable but trends can be important and I like this trend.
My MUGA (heart test) has dropped, however. Normal is above 50, and I've been at 64 since starting treatment. In the past three months my score dropped to 56, which is still in the normal range but a significant drop. I'll get retested in another 3 months. If my levels continue to drop I would need to consider discontinuing Herceptin, and I'm hoping that won't be the case, as I'm betting a lot on that drug and want to complete two years of it. However, the risk of low MUGA scores are heart attack and congestive heart failure, and I won't risk that if the numbers fall too far.
I guess I'll update in May!
More juggling
I haven't been on much because I've been too busy! Life continues at the same breakneck pace.
I have turned in my Genentech story and it's been approved at the first level; it's off to FDA approval next (because I will be speaking about a pharmaceutical, I need FDA approval of what I'm going to say). I have also turned in 20 pages of content for the Komen Race for the Cure website - the written content came from me (or I stole it from other Komen docs and fixed it up). I've got Tessa's friend Jessie here for 3 nights as her parents are in San Fran; Jessie is a fabulous kid and a joy to have around, but still, it's kept me busy. Ryan and I have been doing some yard projects, mostly maintenance we'd been putting off. And then there's the usual preschool, swimming lessons (Tessa has improved dramatically!), birthday parties (two this weekend), and the like. I'm struggling to lose two pounds - nothing to "worry" about but I'm also aware that pounds creep on one or two at a time, and so I have to get rid of them one or two at a time. Exercise is sporadic at best; I need to better learn how to fit it in. I'm fully expanded now, and awaiting surgery March 2 for the new implant and corrections on the other side.
February 22 - 3-Day Kick-off party at my house (Interested? Email me and I'll invite you!)March 2 - surgery
April 15 - Whidbey Island Half Marathon
April 19-29 Hawaii!
May 12 - Giant Yardsale Fundraiser
June 16 - Race for the Cure
It's going to be a busy spring!
Additionally, I've been asked by Komen to head up a new program called "I am the Cure" for the Race for the Cure. It's a fabulous opportunity...I just need to see if I have time to do it. I'm still trying to figure out how much work Genentech will offer, and I need to prioritize that because there is a financial stipend for Genentech but not Komen. And I haven't forgotten my goals as a stay at home mom, either. I think today we're going to go to the aquarium. :-)
See, I really am busy!
Now, off to take the girls and take the dog for a walk...
Love,
Kristina
I have turned in my Genentech story and it's been approved at the first level; it's off to FDA approval next (because I will be speaking about a pharmaceutical, I need FDA approval of what I'm going to say). I have also turned in 20 pages of content for the Komen Race for the Cure website - the written content came from me (or I stole it from other Komen docs and fixed it up). I've got Tessa's friend Jessie here for 3 nights as her parents are in San Fran; Jessie is a fabulous kid and a joy to have around, but still, it's kept me busy. Ryan and I have been doing some yard projects, mostly maintenance we'd been putting off. And then there's the usual preschool, swimming lessons (Tessa has improved dramatically!), birthday parties (two this weekend), and the like. I'm struggling to lose two pounds - nothing to "worry" about but I'm also aware that pounds creep on one or two at a time, and so I have to get rid of them one or two at a time. Exercise is sporadic at best; I need to better learn how to fit it in. I'm fully expanded now, and awaiting surgery March 2 for the new implant and corrections on the other side.
February 22 - 3-Day Kick-off party at my house (Interested? Email me and I'll invite you!)March 2 - surgery
April 15 - Whidbey Island Half Marathon
April 19-29 Hawaii!
May 12 - Giant Yardsale Fundraiser
June 16 - Race for the Cure
It's going to be a busy spring!
Additionally, I've been asked by Komen to head up a new program called "I am the Cure" for the Race for the Cure. It's a fabulous opportunity...I just need to see if I have time to do it. I'm still trying to figure out how much work Genentech will offer, and I need to prioritize that because there is a financial stipend for Genentech but not Komen. And I haven't forgotten my goals as a stay at home mom, either. I think today we're going to go to the aquarium. :-)
See, I really am busy!
Now, off to take the girls and take the dog for a walk...
Love,
Kristina
Friday, February 02, 2007
Signing up for the 3-Day and Save the date!
If you wish to look at joining team Warrior Women, please check out:
http://www.the3day.org/seattle07/warriorwomen
And please save the date: Saturday, May 12 is the giant yard-sale fundraiser. More details to follow!
http://www.the3day.org/seattle07/warriorwomen
And please save the date: Saturday, May 12 is the giant yard-sale fundraiser. More details to follow!
Tuesday, January 30, 2007
Juggling
I have a lot of balls up in the air right now: Komen, Genentech, motherhood, fitness/running/marathon, weight, Hawaii, surgery & follow up stuff for treatment, co-op preschool, friends, marriage, housework, and even the occassional need to sit down and take a breath.
Some days I manage this better than others. The last couple of days I've felt good about my progress: I have cleaned out our office -something that has been bothering me for A YEAR!, submitted my Genentech work and expense report, done a bunch of work for Komen, followed up on various commitments, stayed on plan for Weight Watchers (it's a lifestyle, not a diet....which means that to stay "lifetime" I have to do it for the rest of my life....which I had not been doing, so I gained a couple of pounds), etc. I am nowhere near caught up but I'm making progress, and progress feels GOOD!
Right now, Tessa is playing dress-up with Anna, the sun is shining, Shep is happy because I took him for a walk...and the world looks good. :-)
Juggle, juggle, juggle. I drop balls, but I'm trying to find the right rythem...
Kristina
Some days I manage this better than others. The last couple of days I've felt good about my progress: I have cleaned out our office -something that has been bothering me for A YEAR!, submitted my Genentech work and expense report, done a bunch of work for Komen, followed up on various commitments, stayed on plan for Weight Watchers (it's a lifestyle, not a diet....which means that to stay "lifetime" I have to do it for the rest of my life....which I had not been doing, so I gained a couple of pounds), etc. I am nowhere near caught up but I'm making progress, and progress feels GOOD!
Right now, Tessa is playing dress-up with Anna, the sun is shining, Shep is happy because I took him for a walk...and the world looks good. :-)
Juggle, juggle, juggle. I drop balls, but I'm trying to find the right rythem...
Kristina
Monday, January 29, 2007
A Mommy Moment
Yesterday, Tessa and I took a shower together. Usually I enjoy showers to myself, but Tessa had dipped her hair into my latte (grrr!) and both of us were in need of a quick scrub, so we popped in together to save time, instead of giving Tessa a full bath, which is as much playtime as anything else.
While in the shower, we were singing to pass the time. (Isn't that what people do in showers?) I started singing "So Far Away" by Carole King - I think I'd heard it on the radio a few minutes before getting into the shower.
I stood there, water cascading over us, Tessa in my arms, her head on my shoulder, as she enjoyed the warmth, and I sang, "You're just time away; long ago I reached for you and there you stood; holding you again would only do me good," and I came to the realization that this was a moment to never forget.
One day, perhaps twenty years from now, my daughter will live on her own, and would think that it was the height of weirdness to simply relax her naked body on mine to enjoy a shower together (and, at 24, I agree, that would be pretty weird...even assuming I was strong enough to lift her!). I realized that one day, I'd look back at the simple pleasures of being the mother of a young child, and I would yearn for the closeness of my sweet girl. One day, she'll be far away, and I will yearn for her, and I will remember the moment when all that mattered was the warm water and the relaxation of being together.
The moment passed; we quickly scrubbed our hair clean, got ready, and headed out into the day (and the beautiful sunshine - hurrah!). But I hope that I can carry that moment in my heart forever, and that I do remember it. For a moment in time, we had everything we needed, and all was well with the world.
Lovely.
I wish you such moments of living in the present, too, and I hope that I can remember mine more often.
Love,
Kristina
While in the shower, we were singing to pass the time. (Isn't that what people do in showers?) I started singing "So Far Away" by Carole King - I think I'd heard it on the radio a few minutes before getting into the shower.
I stood there, water cascading over us, Tessa in my arms, her head on my shoulder, as she enjoyed the warmth, and I sang, "You're just time away; long ago I reached for you and there you stood; holding you again would only do me good," and I came to the realization that this was a moment to never forget.
One day, perhaps twenty years from now, my daughter will live on her own, and would think that it was the height of weirdness to simply relax her naked body on mine to enjoy a shower together (and, at 24, I agree, that would be pretty weird...even assuming I was strong enough to lift her!). I realized that one day, I'd look back at the simple pleasures of being the mother of a young child, and I would yearn for the closeness of my sweet girl. One day, she'll be far away, and I will yearn for her, and I will remember the moment when all that mattered was the warm water and the relaxation of being together.
The moment passed; we quickly scrubbed our hair clean, got ready, and headed out into the day (and the beautiful sunshine - hurrah!). But I hope that I can carry that moment in my heart forever, and that I do remember it. For a moment in time, we had everything we needed, and all was well with the world.
Lovely.
I wish you such moments of living in the present, too, and I hope that I can remember mine more often.
Love,
Kristina
Friday, January 26, 2007
The 3-Day in 2007
I have offically signed up for The Breast Cancer 3-Day in Seattle, September 7-9, 2007. I am excited to begin my work on it, and hope that those who sponsored me last year will consider doing so again.
This year, the team is re-named Warrior Women. I have long imagined that my friends and family were an army supporting me as I fought the beast of breast cancer; my middle name, Louise, also means warrior woman. In short, the name just struck me as "right" and I hope that others like it, too. I loved being a part of Team Kristina last year, but this year, I wanted our name to be more inclusive of others, and not just about me. I'm hoping to have other survivors join the team, as well.
I also love the name because it fits with The Susan G. Komen Breast Cancer Foundation's new advertising campaign, aimed at young women:
When we get our hands on breast cancer, we're going to punch it, strangle it, kick it, spit on it, choke it and pummel it until it's good and dead. (Not just horror movie dead, but really, really dead.) And then we're going to tie a pink ribbon on it."
By the way, Komen is changing it's name to "Susan G. Komen for the Cure," and this is part of their re-branding. They're getting hip with the times!)
That sentiment makes me very, very happy. Pink is pretty, and so are we, but we are also fighters, and breast cancer is going DOWN! (
Interested in joining my team? I would love to have you. We will have a bigger team than last year, and we're going to have a wonderful time. Here's a link for joining us:
Join team Warrior Women at the 3-Day in 2007
If you are so inclined, you can also click on my name and make a donation. I can't wait to get started with this!
With love,
Kristina
This year, the team is re-named Warrior Women. I have long imagined that my friends and family were an army supporting me as I fought the beast of breast cancer; my middle name, Louise, also means warrior woman. In short, the name just struck me as "right" and I hope that others like it, too. I loved being a part of Team Kristina last year, but this year, I wanted our name to be more inclusive of others, and not just about me. I'm hoping to have other survivors join the team, as well.
I also love the name because it fits with The Susan G. Komen Breast Cancer Foundation's new advertising campaign, aimed at young women:
When we get our hands on breast cancer, we're going to punch it, strangle it, kick it, spit on it, choke it and pummel it until it's good and dead. (Not just horror movie dead, but really, really dead.) And then we're going to tie a pink ribbon on it."
By the way, Komen is changing it's name to "Susan G. Komen for the Cure," and this is part of their re-branding. They're getting hip with the times!)
That sentiment makes me very, very happy. Pink is pretty, and so are we, but we are also fighters, and breast cancer is going DOWN! (
Interested in joining my team? I would love to have you. We will have a bigger team than last year, and we're going to have a wonderful time. Here's a link for joining us:
Join team Warrior Women at the 3-Day in 2007
If you are so inclined, you can also click on my name and make a donation. I can't wait to get started with this!
With love,
Kristina
Wednesday, January 24, 2007
All fired up!
This morning I attended the Susan G. Komen Breast Cancer Foundation (now renamed Susan G. Komen for the Cure) Annual Meeting. It was fabulous to be around others committed to ending breast cancer, but here's the most exciting part:
One of the presenters was Dr. Dwight Randal, a truly brilliant guy who is on Komen's board. He talked about the work that one of his colleagues is doing to train the body to attack cancer, because the immune system doesn't work for cancer because the body sees the cancer as "self" and treats cancerous cells as "self" instead of as a foriegn body.
Well, to make a long story short, this doctor has a theory that if cells are retrained to see cancer as a foriegn body, the immune system will attack them.
The first patient started the first phase of the trial six weeks ago. She's dubbed "patient 001." Well, 001 is a late stage IV patient who has tried multiple therapies, including multiple cutting edge therapies, but nothing has worked, and the mass inside her chest is so large that scans can't see through it. The way Dr. Randal talked about it, she was lying on her deathbed. So, she tried this very new, very experimental therapy.
The result? Three weeks later, she was home. Her tumor shrunk 92% in that time. 92%!!!!!! I have never met this woman, but I could have cried from happiness with that number. Now it's six weeks later, and she's doing well; she'll have anther set of scans soon, but she feels good and she's at home.
Is this the cure? Or at least the cure for some part of the disease? We're a long way from knowing that. Patient 002 is starting the trial today, perhaps as I write this. Will her results be as good? Only time will tell. Here's what I know, though: good works are happening. We will find a cure, this one or another one. And Komen for the Cure is funding this kind of research. I am proud to affilliate myself with them, and proud to spend my time for them.
Kristina
One of the presenters was Dr. Dwight Randal, a truly brilliant guy who is on Komen's board. He talked about the work that one of his colleagues is doing to train the body to attack cancer, because the immune system doesn't work for cancer because the body sees the cancer as "self" and treats cancerous cells as "self" instead of as a foriegn body.
Well, to make a long story short, this doctor has a theory that if cells are retrained to see cancer as a foriegn body, the immune system will attack them.
The first patient started the first phase of the trial six weeks ago. She's dubbed "patient 001." Well, 001 is a late stage IV patient who has tried multiple therapies, including multiple cutting edge therapies, but nothing has worked, and the mass inside her chest is so large that scans can't see through it. The way Dr. Randal talked about it, she was lying on her deathbed. So, she tried this very new, very experimental therapy.
The result? Three weeks later, she was home. Her tumor shrunk 92% in that time. 92%!!!!!! I have never met this woman, but I could have cried from happiness with that number. Now it's six weeks later, and she's doing well; she'll have anther set of scans soon, but she feels good and she's at home.
Is this the cure? Or at least the cure for some part of the disease? We're a long way from knowing that. Patient 002 is starting the trial today, perhaps as I write this. Will her results be as good? Only time will tell. Here's what I know, though: good works are happening. We will find a cure, this one or another one. And Komen for the Cure is funding this kind of research. I am proud to affilliate myself with them, and proud to spend my time for them.
Kristina
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