This morning I went to my radiation simulation appointment. It went relatively well, I got my tattoos (two black dots), and I'm ready to go. However, somebody screwed up the scheduling. Dr. Morris told me, very distinctly, that she wanted me to be ready to start radiation on the 2nd. Well, apparently they don't have that note in the schedule, and Dr. Morris is on vacation, and they said they could get me going on the 16th. WHAT?! I negotiated them to the 10th, but they were very clear with me that this schedule could change at any time and I may not be able to start on the 10th.
Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.
I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.
Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.
Sigh.
Wednesday, December 28, 2005
Tuesday, December 27, 2005
What's on the outside
(I will put a Christmas update posting another evening, I promise.)
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
Thursday, December 22, 2005
A regular day, but tired now
I had another good day - a playdate with Heather & Kelton on Vashon this morning (we made cookies, and Heather sent us home with some, much to Ryan's delight), and then grocery shopping in the afternoon, and then I made a (simple) dinner. Now I'm completely worn out, but I am hopeful that I will awaken tomorrow refreshed and ready to go. I'd better - I have a lot of Christmas stuff to complete.
Tomorrow I'll pick up the roast (and the horseradish, which I forgot to buy...oops!) and then we're set for all the Christmas groceries. I've got my food list of what I need to do and when, and tomorrow I'll bake some more.
I can't wait to awaken on Christmas morning, and to see the sparkle in Tessa's eye. There is too much to do between now and then, but it's worth it.
And now, off to bed I go, because today I know when to say "enough." Wrapping Tessa's presents can wait one more day.
Love,
Kristina
Tomorrow I'll pick up the roast (and the horseradish, which I forgot to buy...oops!) and then we're set for all the Christmas groceries. I've got my food list of what I need to do and when, and tomorrow I'll bake some more.
I can't wait to awaken on Christmas morning, and to see the sparkle in Tessa's eye. There is too much to do between now and then, but it's worth it.
And now, off to bed I go, because today I know when to say "enough." Wrapping Tessa's presents can wait one more day.
Love,
Kristina
Wednesday, December 21, 2005
As the chemo leaves my system
Joy, joy, joy. Today at two o'clock in the afternoon, Ryan looked at me and said, "Usually at this time on a Wednesday, we'd be arriving at the doctor's office to start chemo." Well, not today, and hopefully never again! My heart skips a beat - happily - to think that I'm putting this chapter behind me.
The weekend was a bit rough because I was feeling the effects of the chemo, and on Monday I still didn't feel that great. Tuesday I felt a bit better, but much less than I'd hoped to, and my spirits sank a bit to think that chemo recovery was going to be harder than I thought. Then I woke up today, though...feeling good. At last! Today I've accomplished more than I had in weeks, and it feels marvelous. I know that I'm getting better because I'm seeing all kinds of things around the house that are bugging me and I'm making lists about what I need to do first, which projects to start, menus to plan, last minute Christmas tasks...and the ideas don't exhaust me, they energize me.
This weekend I did fundraising (Barnes & Noble gift wrapping, and the Farmer's Market) with my dear friends again - although they spent more time than I did as I got worn out too quickly. I am VERY pleased to report that these events have raised over $800 in cash donations for the 3-Day Walk. We are going to make a difference with this disease. We WILL find a cure.
Sunday evening Paul & Libby brought dinner, and we enjoyed chatting with them and catching up. We're looking forward to spending New Year's with them - that's a tradiation that we truly enjoy. (This year, Tessa's staying with Grammy & Grandpa. Hurrah - everybody will love that!)
We went to Portland on Monday and Tuesday to visit Ryan's parents, and we were both delighted to see that Dad is doing very well after his stroke. Dad's eyes still twinkle, and he's in good spirits, and his physical therapy is going well. We are all optimistic for a full recovery, and we're delighted at the progress he's making.
Today we went to PEPS at Beth's in the morning (and enjoyed cookie decorating for the kids - what a fun way to spend time), then lunched in the Junction with some PEPS friends, ran an errand or two, then came home. I started making my lists of things to do, then ran out to run more errands. While at Westwood Village, I hear my name being called, and lo and behold it's Michele - also sans child - calling me. We had a lovely chat for an hour at Starbucks before returning to our individual errands. Then, after returning home, we walked to friends' Kathleen & Jim's home, and the adults chatted and enjoyed a wonderful dinner (thank you Kathleen for slaving over the stove for us!) while the girls played and cavorted. Tessa and Elena are becoming the best of friends, and I really love hearing their giggles and watching them chase one another. (Sure, sharing is hard for them sometimes, but their joy far outweighs any bursts of temper.)
I have laundry to fold, lists to check, and lots to do tonight. I know I must pace myself but I feel such incredible joy to feel halfway like a normal human being that I'm savoring this newfound energy. I'll take it where I can find it!
Love to all,
Kristina
The weekend was a bit rough because I was feeling the effects of the chemo, and on Monday I still didn't feel that great. Tuesday I felt a bit better, but much less than I'd hoped to, and my spirits sank a bit to think that chemo recovery was going to be harder than I thought. Then I woke up today, though...feeling good. At last! Today I've accomplished more than I had in weeks, and it feels marvelous. I know that I'm getting better because I'm seeing all kinds of things around the house that are bugging me and I'm making lists about what I need to do first, which projects to start, menus to plan, last minute Christmas tasks...and the ideas don't exhaust me, they energize me.
This weekend I did fundraising (Barnes & Noble gift wrapping, and the Farmer's Market) with my dear friends again - although they spent more time than I did as I got worn out too quickly. I am VERY pleased to report that these events have raised over $800 in cash donations for the 3-Day Walk. We are going to make a difference with this disease. We WILL find a cure.
Sunday evening Paul & Libby brought dinner, and we enjoyed chatting with them and catching up. We're looking forward to spending New Year's with them - that's a tradiation that we truly enjoy. (This year, Tessa's staying with Grammy & Grandpa. Hurrah - everybody will love that!)
We went to Portland on Monday and Tuesday to visit Ryan's parents, and we were both delighted to see that Dad is doing very well after his stroke. Dad's eyes still twinkle, and he's in good spirits, and his physical therapy is going well. We are all optimistic for a full recovery, and we're delighted at the progress he's making.
Today we went to PEPS at Beth's in the morning (and enjoyed cookie decorating for the kids - what a fun way to spend time), then lunched in the Junction with some PEPS friends, ran an errand or two, then came home. I started making my lists of things to do, then ran out to run more errands. While at Westwood Village, I hear my name being called, and lo and behold it's Michele - also sans child - calling me. We had a lovely chat for an hour at Starbucks before returning to our individual errands. Then, after returning home, we walked to friends' Kathleen & Jim's home, and the adults chatted and enjoyed a wonderful dinner (thank you Kathleen for slaving over the stove for us!) while the girls played and cavorted. Tessa and Elena are becoming the best of friends, and I really love hearing their giggles and watching them chase one another. (Sure, sharing is hard for them sometimes, but their joy far outweighs any bursts of temper.)
I have laundry to fold, lists to check, and lots to do tonight. I know I must pace myself but I feel such incredible joy to feel halfway like a normal human being that I'm savoring this newfound energy. I'll take it where I can find it!
Love to all,
Kristina
Wednesday, December 14, 2005
Done with chemo!
Well, folks, I did it. Sixteen chemo completed! When the machine beeped that I was done, a collective cheer went up. The prayer is that I never have to do this again. The party, however, was lovely, with friends and family coming by, and all the nurses stopping in to congratulate me. Thank you to those who came by to offer support, and to all those who left email and telephone messages for me. :-)
Right now the Benedryl (which makes me sleepy) and the Decadron (which makes me feel like I've had too much caffiene) are duking it out, and the Benedryl is winning, so I'm off to bed. Love to all!
Love,
Kristina
Right now the Benedryl (which makes me sleepy) and the Decadron (which makes me feel like I've had too much caffiene) are duking it out, and the Benedryl is winning, so I'm off to bed. Love to all!
Love,
Kristina
Sixteen is my lucky number
Today is number sixteen of sixteen. In July, when I started chemo, I could barely imagine what it would feel like to be done. Today, I will begin to find out! I dread the next week, but I am thrilled at the prospect of next Tuesday, when I'll be feeling a bit better, and I will start to feel better every day without knocking myself down with another chemo.
Some friends and family have agreed to meet me at the hospital for a final chemo party - hey, you know me, any excuse to have a party is a good one! I'll provide a cheese platter, cupcakes, and eclairs...and my friends and family will provide me with distraction so that I don't run out of the hospital screaming before it's done.
This is a time for reflection. After a few days, I'm sure that reflection will make it to the blog. ;-)
Love,
Kristina
Some friends and family have agreed to meet me at the hospital for a final chemo party - hey, you know me, any excuse to have a party is a good one! I'll provide a cheese platter, cupcakes, and eclairs...and my friends and family will provide me with distraction so that I don't run out of the hospital screaming before it's done.
This is a time for reflection. After a few days, I'm sure that reflection will make it to the blog. ;-)
Love,
Kristina
Sunday, December 11, 2005
The energy crisis
Well, after my last post I crashed again. Not unexpected, so not even disappointing. After a couple of activities on Saturday, I was just wiped out, and found myself crawling into my PJs just after 5pm to go to bed. Ryan brought me dinner on a tray (thank you to Ryan for delivering and Natasha for making...that meal fed us twice!) and I went to bed and to sleep early.
Today I feel better, though not lively, and I went to the Farmer's Market with Michele & Lori to do some more 3-Day fundraising. I am very pleased to say that we've brought in about $500 in cash (and one check) to date (and this is not yet reflected on the fundraising website as we're holding on to the cash to make just one deposit after our last winter day at the market, Dec. 18). The little bit here, little bit there, method of collecting donations is certainly making a difference, and I really have enjoyed spending time with Lori & Michele at the market, as well as with the Barnes & Noble group (Lori, Michele, Holly, and Donna....plus Jenny, who came after I left so I'm sorry I missed her).
Off to rest again now. Only a few more days 'til my last chemo!
Love,
K
Today I feel better, though not lively, and I went to the Farmer's Market with Michele & Lori to do some more 3-Day fundraising. I am very pleased to say that we've brought in about $500 in cash (and one check) to date (and this is not yet reflected on the fundraising website as we're holding on to the cash to make just one deposit after our last winter day at the market, Dec. 18). The little bit here, little bit there, method of collecting donations is certainly making a difference, and I really have enjoyed spending time with Lori & Michele at the market, as well as with the Barnes & Noble group (Lori, Michele, Holly, and Donna....plus Jenny, who came after I left so I'm sorry I missed her).
Off to rest again now. Only a few more days 'til my last chemo!
Love,
K
Friday, December 09, 2005
A burst of energy
I have no idea where it came from, but in the past day I have actually been very active. Yesterday I took Tessa to preschool, then headed to a playdate with Marilyn & Damien (lovely), then came home to address Christmas cards and do a few chores, and then headed out to bookclub. This morning Ryan has Tessa at preschool, and I've added a few more Christmas cards to the pile now that I have their addresses, and in a moment I'll head off to the post office. Later today I'm going to Barnes & Noble in West Seattle to wrap presents as a fundraiser for the 3-Day, and I'm looking forward to hanging out with my girlfriends there, and to making progress on our fundraising goals.
I will take energy where I can find it, even if I have no idea where it's coming from! I hope that today finds you well, as well.
Love,
Kristina
I will take energy where I can find it, even if I have no idea where it's coming from! I hope that today finds you well, as well.
Love,
Kristina
Wednesday, December 07, 2005
Fifteen down, ONE TO GO!
One isn't so much. I can handle one more. Plus, I'm turning it into a party, and that makes it more fun.
Hurrah for the end of chemo - soon!
Kristina
Hurrah for the end of chemo - soon!
Kristina
Before and During (a.k.a. check out my head fuzz!)
I'm still waiting for the "after" pictures, of course. Here are two of my favorite pictures of myself (one was taken the day before my mastectomy with my hair "styled", with Carolyn & Susan; the other was taken at Daven's birthday party, with my hair air-dried, in July and is with Holly)...and here is the picture that I know you're dying to see: head fuzz! I don't have hair but I do have fuzz. Not bad for a girl still in chemo... I still consider myself bald, but there is hope for the future.
I used to loathe my hair. I was actually embarrassed by my hair. That seems so ridiculous now! Those pictures of the "old" me take my breath away - I can hardly believe that I looked so healthy. I look forward to more days with a full head of hair to follow.
Kristina
Updates
A couple more pictures for your viewing pleasure - one of Tessa and I at The Nutcracker, and one of Tessa being silly at the Santa breakfast last weekend.
I haven't been updating online very much because I have just been worn out. Every day we try to do one fun activity, but that's all that I have in me, and after that I find myself laying down or watching TV, but not reading or updating the blog. I seriously wonder if my brain has atrophied in this process - I truly hope that as I recover from chemo that my braincells will return along with my energy.
Last Saturday morning we took Tessa to the West Seattle Kiwanis Santa Breakfast benefiting Toys for Tots, and at the last minute the Perrys, the Braddock-Reifels, and the Starkey-Burdetts joined us there as well, making it quite the party. The girls (Nina, Lexi, and Tessa) ran around having a grand time, and Tessa sat with Santa and asked him for a pony. (We have explained to Tessa that she can't have a live pony in West Seattle - our yard isn't big enough and we don't have a barn. I'm a bit worried that she expects a live pony under the Christmas tree....!) We were supposed to go to Warm Beach with the Dahl clan that afternoon, and we'd hoped to go to Shannon & Doug's party, but since Saturday is my hard day and those things occurred later in the afternoon, we had to cancel attending both events, and I laid low. Bah humbug.
Then, on Sunday, finally, The Nutcracker! Tessa wore her fancy Christmas dress (as pictured in the last post) and we headed to McCaw Hall to see the Pacific Northwest Ballet. I had spoken to Tessa quite a bit about how this was a very special event, and that it was important not to make too much noise while the dancers and musicians were performing, and that I expected her to be on her best behavior. She heard what I said, and indeed, she behaved beyond my wildest dreams. Tessa was an angel throughout the performance, even turning to quietly whisper "Shhhh!" at the girls behind us who were chatting. (I quietly explained to Tessa that their mother could shush them, but that I appreciated how quiet Tessa was being.) Tessa sat on Grandpa's lap for most of the performance, and her eyes were even bigger than usual as she watched the dancers leap, twirl, spin, and cavort across the stage.
Tessa's favorite part was "the ponies." (During the mock battle with the toy soldiers and the mice, some soldiers come out on horseback.) However, she seemed to enjoy every minute, and actually laughed and clapped when the whirling dervish with Chinese dancers came out, and again when the peacock came out.
At the very end, with less than five minutes to go, Tessa crawled into my lap and said, "Mommy, when do I get to dance in The Nutcracker?" I promised her that if she wanted to, in a few years, we could try. Tessa does love her dance class, and who knows? Maybe on Sunday a ballerina was inspired.
My mom ("Grammy") gave Tessa a Clara ornament for the tree, and Tessa clasps it to her chest and dances with it...she'd sleep with it if we let her. (We do not. She's already broken off one foot, which we re-glued.)
And as for me? I'm not sure if I enjoyed Tessa's responses or the actual performance more. It's been a long time since I've been to the ballet, and I truly loved the beauty and grace of the dancers. (My personal favorite parts are the dance of the snowflakes, the dance of the sugarplum fairies, and the peacock.) I enjoyed getting dressed up, spending time with family, holding Ryan's hand during the performance, seeing all of the other people at the hall...really, I did enjoy every part (and I'm reminded how much I enjoy the ballet, symphony, and attending plays...I must do that more!). But I have to say that these things are at best only equal to the joy I felt in sharing all of this with Tessa. I think that Sunday was the fulfillment of a lifelong dream - sharing the festivities and the joy with my daughter, and seeing her enjoy it as much as I did, created a memory that will never fade. Sharing that memory with Ryan, my parents, and my grandmother only made it sweeter.
While I was at The Nutcracker, Lori & Michele were at the Farmer's Market, fundraising for our 3-Day team. They have made quite a bit of progress in fundraising already, and I'm so proud of them. We have a team of eight individuals so far, and we welcome others to join as well. It is going to be a fabulous event, and certainly I believe that the money is going to an amazing cause. I have received a few donations recently through the website from people I've never met, and this amazes me - thank you SO much to those who have donated. I'm touched by your generousity and spirit of giving.
And as for my health, and updates? Well, I will be glad to be done with chemo, that's for certain. Just when I think my energy is at all time lows, it hits another low, and this is frustrating. I can not "push through" the fatigue sometimes, and all I can do is lay down, and I hate that. But, it is what it is. Current symptoms from treatment include:
- Weight gain in the neighborhood of 15-20 pounds. UGH.
- Digestive woes. I still take Zofran (for nausea) with some regularity, and my digestive tract is a mess. (I will spare the details. It's not pretty.) Part of this is acid reflux, apparently...another side effect of the drugs.
- Nose bleeds. Taxol has dried out the membranes in my nose so that when I wipe my nose (which I must do constantly) it bleeds a bit.
- Neuropathy. I can not really feel the soles of my feet or my toes any more, and my pinky fingers and ring fingers are slightly numb as well.
- Fatigue.
- Insomnia. I take a sleeping pill every night and still have trouble sleeping through the night.
- Chemobrain. I can barely remember my own name. Horrible!
- Hot and cold flashes. If I'm not freezing, I'm frying. My thermostat is completely broken!
- Mouth sores. These feel a lot like cankers. Fortunately, I have prescription lozenges that help.
- Lymphedema. I'm in physical therapy now and I do manual lymphatic massage to help out; soon I will get fitted for a sleeve and glove to wear when I travel. This comes and goes, and mine is mild, but I still don't like it. My index finger looks like a sausage!
- I still don't have 100% mobility in my left arm (surgery side). The physical therapist is working on this with me.
- Bald. I have fuzz all over my head that really is growing, but this is not "real" hair and I want real hair! (I will have to post a picture soon of my fuzzy head, so others can see.)
- No eyebrows or eyelashes left at all. Yuck.
- Skin breakouts. All I can say to this is "You've got to be kidding!" Apparently, the steroid is the contributor to this. Bah humbug.
Maybe I've missed some things, but there it is. Today is chemo number fifteen, and next week is the last one. I truly look forward to that celebration! I know that radiation isn't "easy" but it's supposed to be a cakewalk compared to chemo, and I'm hoping and counting on that.
The good news, after that list of complaints? It isn't as bad as it could be. I am still able to enjoy myself sometimes. Yesterday, when Ryan was taking Tessa to Grammy & Grandpa's house, I actually walked (not quickly!) from my house to Michele's house, with a break at a coffee shop in the middle. I was able to enjoy the Nutcracker. There are small pockets of time when I am able to forget all of this, and there is great joy in that.
I hope that you are well - I send my love!
Kristina
Sunday, December 04, 2005
The Nutcracker
A few pictures to capture the moments of the day... Descriptions of the day to follow!
Wednesday, November 30, 2005
Today is number fourteen
Fourteen is a much larger number to me than it ever used to be. I'm amazed to have come this far....but I'm also amazed to think of how far away sixteen feels.
The past week has passed by slowly. We had a good Thanksgiving day with my family, and I took particular joy in watching Tessa and Caleb play and enjoy one another's company. I am delighted that Tessa has a cousin her age that she sees so often, and I hope that they will share a lifetime of friendship with her cousins. Little Joshua is not far behind these two, I know, and I look forward to the day when the three children are playing games together.
Thanksgiving, my parents hosted us, and we feasted on turkey and all the trimmings. We also spent some time at the club, which was closed for the holiday (nice to have that in the family!), and Mike & Ryan played basketball, while my mom & I did some (very slow) walking around the track, and then all of us (plus my dad, the kids, and Krystal) hung out at the hot tub to relax before heading back up to the house for the big meal. It was very relaxing - thanks, Mom & Dad! The next day, we were able to visit at Eric & Alice's house, and see their guests (our friends) Jaki & Russ, Scott & Karen and to enjoy leftovers. I hung out with Jaki, Russ, and Karen while the other adults took the four kids up to the park to play soccer in the covered play structure (a wonderful idea for a very rainy day), and we all visited.
Somewhere in the past few days, I picked up a nasty cold/infection...the very last thing I needed. It comes with a cough and congestion and the usual nastiness of a chest cold, and I have less-than-usual-good-humor about it. On Monday I went on antibiotics, and I was prescribed a five day dosage, and hopefully that will clear it up completely.
Aside from that, pretty much the only other thing I've done in a week is, together with Ryan & Tessa, put up the Christmas tree. This is earlier than I've EVER done it before, but we were motivated by two things: first, that it is absolutely delightful to see Tessa get excited about Christmas and its trimmings, and it seems fitting to draw that out as long as possible; and second, bringing in the Christmas season seems to draw closer the end of chemo. I sit on the couch and watch Tessa redecorate the lower half of the tree for an hour at a time (she is truly fascinated by it, and loves her active roll in the decorating) each day, while I try to remember that at the height of this season I will be DONE with being poisoned...if Christmas is right around the corner, then the end of chemo must be close, as well.
My ability to deal with chemo, its side effects, and its emotional toll seems to be ending. I'm tired to the point that simple things completely wear me out, and I'm oh-so-tired of the digestive tract woes, numbness in hands and feet, BALDNESS (yes I have a head of fuzz, which is a wonderful step in the right direction....but it's FUZZ and you can still see my scalp: I want REAL hair just like everyone else), insomnia....etc, etc, etc. It's whining to keep repeating my list but it really is taking a physical toll on me.
I hold Tessa sometimes and just tell her how sorry I am that her mommy doesn't have the energy to play. This brings tears to my eyes...I am not who I want to be right now.
Throughout this, Ryan's help with Tessa and around the house is invaluable. He has taken on pretty much everything, and I do very little. I would be lost without him.
So, today is number fourteen. Next week is number fifteen. And then, I will try to turn number sixteen into a party...I plan to bring food and drinks, and friends and fmaily are invited to drop in to say hi and celebrate with me (email me if you want details of when and where). It's not the end of treatment, but it's the end of what I hear is the nastiest part of treatment, and I will celebrate milestones whereever I can!
Sending my love,
Kristina
The past week has passed by slowly. We had a good Thanksgiving day with my family, and I took particular joy in watching Tessa and Caleb play and enjoy one another's company. I am delighted that Tessa has a cousin her age that she sees so often, and I hope that they will share a lifetime of friendship with her cousins. Little Joshua is not far behind these two, I know, and I look forward to the day when the three children are playing games together.
Thanksgiving, my parents hosted us, and we feasted on turkey and all the trimmings. We also spent some time at the club, which was closed for the holiday (nice to have that in the family!), and Mike & Ryan played basketball, while my mom & I did some (very slow) walking around the track, and then all of us (plus my dad, the kids, and Krystal) hung out at the hot tub to relax before heading back up to the house for the big meal. It was very relaxing - thanks, Mom & Dad! The next day, we were able to visit at Eric & Alice's house, and see their guests (our friends) Jaki & Russ, Scott & Karen and to enjoy leftovers. I hung out with Jaki, Russ, and Karen while the other adults took the four kids up to the park to play soccer in the covered play structure (a wonderful idea for a very rainy day), and we all visited.
Somewhere in the past few days, I picked up a nasty cold/infection...the very last thing I needed. It comes with a cough and congestion and the usual nastiness of a chest cold, and I have less-than-usual-good-humor about it. On Monday I went on antibiotics, and I was prescribed a five day dosage, and hopefully that will clear it up completely.
Aside from that, pretty much the only other thing I've done in a week is, together with Ryan & Tessa, put up the Christmas tree. This is earlier than I've EVER done it before, but we were motivated by two things: first, that it is absolutely delightful to see Tessa get excited about Christmas and its trimmings, and it seems fitting to draw that out as long as possible; and second, bringing in the Christmas season seems to draw closer the end of chemo. I sit on the couch and watch Tessa redecorate the lower half of the tree for an hour at a time (she is truly fascinated by it, and loves her active roll in the decorating) each day, while I try to remember that at the height of this season I will be DONE with being poisoned...if Christmas is right around the corner, then the end of chemo must be close, as well.
My ability to deal with chemo, its side effects, and its emotional toll seems to be ending. I'm tired to the point that simple things completely wear me out, and I'm oh-so-tired of the digestive tract woes, numbness in hands and feet, BALDNESS (yes I have a head of fuzz, which is a wonderful step in the right direction....but it's FUZZ and you can still see my scalp: I want REAL hair just like everyone else), insomnia....etc, etc, etc. It's whining to keep repeating my list but it really is taking a physical toll on me.
I hold Tessa sometimes and just tell her how sorry I am that her mommy doesn't have the energy to play. This brings tears to my eyes...I am not who I want to be right now.
Throughout this, Ryan's help with Tessa and around the house is invaluable. He has taken on pretty much everything, and I do very little. I would be lost without him.
So, today is number fourteen. Next week is number fifteen. And then, I will try to turn number sixteen into a party...I plan to bring food and drinks, and friends and fmaily are invited to drop in to say hi and celebrate with me (email me if you want details of when and where). It's not the end of treatment, but it's the end of what I hear is the nastiest part of treatment, and I will celebrate milestones whereever I can!
Sending my love,
Kristina
Thursday, November 24, 2005
Comments vs. Spam
Happy Thanksgiving, everyone!
I just changed an option on my blog so that anyone entering a comment - which I love! - will have to do a "word verification." I apologise for any inconvenience this may cause, but in addition to the great comments that I receive from friends, family, and assorted loyal readers, I've been getting a lot of spam comments lately, and this should prevent that. (I'm not interested in plastic surgery in Hawaii, thank you, and stop emailing me!!!)
Please keep commenting. I love to hear from you, to see who is reading, and all that.
Kristina
I just changed an option on my blog so that anyone entering a comment - which I love! - will have to do a "word verification." I apologise for any inconvenience this may cause, but in addition to the great comments that I receive from friends, family, and assorted loyal readers, I've been getting a lot of spam comments lately, and this should prevent that. (I'm not interested in plastic surgery in Hawaii, thank you, and stop emailing me!!!)
Please keep commenting. I love to hear from you, to see who is reading, and all that.
Kristina
Wednesday, November 23, 2005
13 down, 3 to go!
(Edited on 11/30 to have the right count....)
I'm home from chemo, and it went well. I even got my favorite nurse today, because she has signed up to be "my" nurse because we hit it off so well, and so when my chart came in she made sure to catch me. I like that. :-)
Chemo went well - it was uneventful. THANK YOU to Michele for driving me there, and to Ryan & Tessa for picking me up.
Happy Thanksgiving, everyone. I will probably spend a good deal of tomorrow curled up on the couch at my parents' house, but that's okay...less than a month, and I will be done with this part of the catastrophe! I'm looking forward to time with family, to watching the cousins (Tessa, Caleb, and Joshua) interact, and to eating turky.
Love,
Kristina
I'm home from chemo, and it went well. I even got my favorite nurse today, because she has signed up to be "my" nurse because we hit it off so well, and so when my chart came in she made sure to catch me. I like that. :-)
Chemo went well - it was uneventful. THANK YOU to Michele for driving me there, and to Ryan & Tessa for picking me up.
Happy Thanksgiving, everyone. I will probably spend a good deal of tomorrow curled up on the couch at my parents' house, but that's okay...less than a month, and I will be done with this part of the catastrophe! I'm looking forward to time with family, to watching the cousins (Tessa, Caleb, and Joshua) interact, and to eating turky.
Love,
Kristina
Tuesday, November 22, 2005
Back together
Our little family is back together - Ryan and Tessa arrived home late last night, sleepy but happy. It's good to have them home. I feel more refreshed than I had in a couple of weeks, and I took Tessa to the community center "play gym" this morning (and had the fun of running into half a dozen families that we know), and then the two of us had lunch at Michele's. During that time, Ryan got a little down-time for himself and went for a bike ride (brrr!).
Now, Ryan is putting Tessa down for her nap, and I'm relaxing for a few minutes before making some cranberry nut loaf for some of the hospital staff for Thanksgiving (as well as for my own family). The nurses at chemo are so kind to me, and I absolutely adore Dr. Rinn and her staff, so I plan to make a big batch of loaves using disposable tins, and pass them out tomorrow.
I have a lot to be thankful for. One hundred years ago, my lump would have almost certainly meant a death sentence. Today, it means horrific treatment, but also the hopeful promise of a long, long life. Without the hard working doctors and nurses who fight to keep me alive and to make me strong again, I would have little hope. Today, however, I am filled with hope and optimism. It seems like a little cranberry nut loaf is the least that I can do.
I am grateful for family and friends, for a loving husband, and for a daughter whose inner and outer beauty take my breath away. I am grateful for our comfortable home, for the food we eat, and for the community we live in. I'm grateful for the beauty of sunsets viewed from the beach close to our house, for hiking in the mountains, and for walks along Alki, Tessa skipping between Ryan and I. I'm grateful for our cat, who sleeps on my foot at night, and for the fact that one day Shep will join our family. I am grateful for the amazing support that I have received from loving friends and family, especially in this darker-than-usual time. I am incredibly grateful for the good health of those in my life... including myself. Despite down days, I've endured chemo really well, and haven't had any other major health issues to contend with. I am grateful.
Happy Thanksgiving. As I bow my head at the Thanksgiving table with my family (thanks for hosting, Mom & Dad!), I will remember how much I have to be thankful for, and I hope that you find your heart full of thanks, as well.
Love,
Kristina
Now, Ryan is putting Tessa down for her nap, and I'm relaxing for a few minutes before making some cranberry nut loaf for some of the hospital staff for Thanksgiving (as well as for my own family). The nurses at chemo are so kind to me, and I absolutely adore Dr. Rinn and her staff, so I plan to make a big batch of loaves using disposable tins, and pass them out tomorrow.
I have a lot to be thankful for. One hundred years ago, my lump would have almost certainly meant a death sentence. Today, it means horrific treatment, but also the hopeful promise of a long, long life. Without the hard working doctors and nurses who fight to keep me alive and to make me strong again, I would have little hope. Today, however, I am filled with hope and optimism. It seems like a little cranberry nut loaf is the least that I can do.
I am grateful for family and friends, for a loving husband, and for a daughter whose inner and outer beauty take my breath away. I am grateful for our comfortable home, for the food we eat, and for the community we live in. I'm grateful for the beauty of sunsets viewed from the beach close to our house, for hiking in the mountains, and for walks along Alki, Tessa skipping between Ryan and I. I'm grateful for our cat, who sleeps on my foot at night, and for the fact that one day Shep will join our family. I am grateful for the amazing support that I have received from loving friends and family, especially in this darker-than-usual time. I am incredibly grateful for the good health of those in my life... including myself. Despite down days, I've endured chemo really well, and haven't had any other major health issues to contend with. I am grateful.
Happy Thanksgiving. As I bow my head at the Thanksgiving table with my family (thanks for hosting, Mom & Dad!), I will remember how much I have to be thankful for, and I hope that you find your heart full of thanks, as well.
Love,
Kristina
Sunday, November 20, 2005
Quiet time
Today Ryan and Tessa took off early to head to Portland. Tessa gave me her "traditional" snuggle - kiss, noser, little hug, BIG hug - and smiled with excitement for the trip. I waved at the door, a little forlorn to see my two favorite people leaving...
But today has been lovely. I've put aside the "should's" and "ought to's" and I've sat around doing, basically, nothing. I'm reading "Refuge" by Terry Tempest Williams (a gift from my friend Lynn, it's been sitting on my bedside table for a long time), drinking tea, enjoying candlelight, and taking it easy. Michele & Lori stopped in briefly to celebrate their fundraising success at the market today (hooray) but other than that I've done nothing, talked to no one.
Ahhhh, the quiet. I almost forgot what it was like. I'm trying not to think too hard about anything, not to do things, not to make lists...just to be. For me, this takes considerable practice...but it's paying off, and I do feel relaxed.
More later. Or not. I haven't decided! ;-)
Kristina
But today has been lovely. I've put aside the "should's" and "ought to's" and I've sat around doing, basically, nothing. I'm reading "Refuge" by Terry Tempest Williams (a gift from my friend Lynn, it's been sitting on my bedside table for a long time), drinking tea, enjoying candlelight, and taking it easy. Michele & Lori stopped in briefly to celebrate their fundraising success at the market today (hooray) but other than that I've done nothing, talked to no one.
Ahhhh, the quiet. I almost forgot what it was like. I'm trying not to think too hard about anything, not to do things, not to make lists...just to be. For me, this takes considerable practice...but it's paying off, and I do feel relaxed.
More later. Or not. I haven't decided! ;-)
Kristina
Saturday, November 19, 2005
Limits
Everyone has their limits, and I'm discovering more and more of mine.
Today I realized that I'm not up for the trip to Portland to visit friends and family tomorrow. This realization made me cry, because I do not like this version of myself, because I will miss seeing people, because I'm mad at myself that I can't just pull it together, because I'm tired of being so tired. Mostly, it's that last one. I can hardly believe that a simple car trip to Portland - one that involves packing a bag, and not much more - can be overwhelming to me right now, but there it is. I have reached an ever deeper level of fatigue, and I just can't push on through.
Ryan and Tessa will go to Portland without me (with my blessing), and I will miss them and wonder what I'm missing out on. I'll stay behind to rest and relax, and to recoup some energy. By the time they return, I'm sure that I will have missed them so much that I'll appreciate them more than ever.
Less than a month of torture to go. Less than a month until I'm done with receiving chemo. I just need to make it to the 14th.... and I know that I will, but it seems so terribly far away.
I may actually do a "real" update over the next couple of days while I'm here by myself...but no promises.
Love,
Kristina
Today I realized that I'm not up for the trip to Portland to visit friends and family tomorrow. This realization made me cry, because I do not like this version of myself, because I will miss seeing people, because I'm mad at myself that I can't just pull it together, because I'm tired of being so tired. Mostly, it's that last one. I can hardly believe that a simple car trip to Portland - one that involves packing a bag, and not much more - can be overwhelming to me right now, but there it is. I have reached an ever deeper level of fatigue, and I just can't push on through.
Ryan and Tessa will go to Portland without me (with my blessing), and I will miss them and wonder what I'm missing out on. I'll stay behind to rest and relax, and to recoup some energy. By the time they return, I'm sure that I will have missed them so much that I'll appreciate them more than ever.
Less than a month of torture to go. Less than a month until I'm done with receiving chemo. I just need to make it to the 14th.... and I know that I will, but it seems so terribly far away.
I may actually do a "real" update over the next couple of days while I'm here by myself...but no promises.
Love,
Kristina
Checking in
Well, the final stretch promises to be the hardest. Chemo was Wednesday, and I haven't felt good since then....ACK! It's very frustrating to wake up each morning feeling just as gross as the day before. Less than a month left.... I'm hoping that my Christmas present is that I feel somewhat normal and that I have a bit more energy.
Ryan has been very helpful, and Tessa is in high spirits, so that helps. I love my family.
Tomorrow we will leave for Portland to visit with Ryan's parents - Ryan's dad had a procedure done last week and we want to go to visit and support them and show them that we care. (There was no possibility of our traveling for Thanksgiving because of the Wednesday chemo appointment, so we're going early, and heading home Tuesday.) I'm hoping that, because it's the second half of my cycle, I'll be feeling a bit stronger for the trip. We are looking forward to seeing family and our Portland friends, Scott, Karen, and Fiona. (Tessa is particularly excited to play with Fiona.)
Today we're laying low, and our "big" activity is a trip to story time at Barnes & Noble for Tessa...a quiet day.
Yesterday evening we got the news that Linda and Gary had their baby! Rex was born a couple of weeks early, much to his mother's delight, and the family is happy and healthy. Hurrah for new life, and for the delight of a baby to be excited about. It's much better to think about the littlest member of my community than to think about stupid old cancer. Congrats, Linda & Gary! We can't wait to see the little guy in person.
Love,
Kristina
Ryan has been very helpful, and Tessa is in high spirits, so that helps. I love my family.
Tomorrow we will leave for Portland to visit with Ryan's parents - Ryan's dad had a procedure done last week and we want to go to visit and support them and show them that we care. (There was no possibility of our traveling for Thanksgiving because of the Wednesday chemo appointment, so we're going early, and heading home Tuesday.) I'm hoping that, because it's the second half of my cycle, I'll be feeling a bit stronger for the trip. We are looking forward to seeing family and our Portland friends, Scott, Karen, and Fiona. (Tessa is particularly excited to play with Fiona.)
Today we're laying low, and our "big" activity is a trip to story time at Barnes & Noble for Tessa...a quiet day.
Yesterday evening we got the news that Linda and Gary had their baby! Rex was born a couple of weeks early, much to his mother's delight, and the family is happy and healthy. Hurrah for new life, and for the delight of a baby to be excited about. It's much better to think about the littlest member of my community than to think about stupid old cancer. Congrats, Linda & Gary! We can't wait to see the little guy in person.
Love,
Kristina
Thursday, November 17, 2005
Quick Thursday update
I am well, but I am tired. T-I-R-E-D. Oh well, at least the countdown is on... I have less than one month until my last chemo appointment.
Today I saw a physical therapist to learn manual lymphatic drainage to control my lymphedema. It was actually very relaxing, and a positive experience. I will go back a couple more times to work on exercises to get back my full range of motion, and I will also be fitted for a lymphedema sleeve to wear when I travel on airplanes (I won't have to wear it otherwise, but I'd like to have it).
My therapist was wonderful...and she might join our 3-Day Walk team! She has done the walk before, but did it alone, and is interested in having a team to walk with. You never know where you will find support...
I went to preschool with Tessa today for the first time in a long time, and enjoyed the experience, though it wore me out.
I know my language is choppy here, but I really am tired. Just checking in. Have a great night, everyone.
Love,
K
Today I saw a physical therapist to learn manual lymphatic drainage to control my lymphedema. It was actually very relaxing, and a positive experience. I will go back a couple more times to work on exercises to get back my full range of motion, and I will also be fitted for a lymphedema sleeve to wear when I travel on airplanes (I won't have to wear it otherwise, but I'd like to have it).
My therapist was wonderful...and she might join our 3-Day Walk team! She has done the walk before, but did it alone, and is interested in having a team to walk with. You never know where you will find support...
I went to preschool with Tessa today for the first time in a long time, and enjoyed the experience, though it wore me out.
I know my language is choppy here, but I really am tired. Just checking in. Have a great night, everyone.
Love,
K
Wednesday, November 16, 2005
12 down, 4 to go!
Today I completed chemo number twelve. Check another one off the list - wahoooo!
I spoke with Dr. Rinn about upcoming treatment. We have agreed that I will get a Lupron shot with my last chemo treatment (December 14, and yes I AM counting). Lupron is a drug that will shut down my ovaries and keep me in menopause; this is important because I am ER+ 90% and PR+ 70%. These numbers are very high, even for hormone receptive positive cancers, and it's very important that we prevent my body from creating any more hormones to feed the cancer. Some recent studies imply that keeping hormones out of my body (through ovarian suppression drugs like Lupron or through oopharectomy or hysterectomy, plus hormone inhibiting drugs like tamoxifin or aromatase inhibitors) will be even more important to my long term health than even the chemotherapy. After radiation, I will start an aromatase inhibitor - shown to be much more effective than tamoxifin in my type of cancer - and my doctor has chosen Femara. (More on that later, but I'm pleased with what the research says about it, and feel very comfortable with this decision.)
We also discussed my chemo brain. Folks, I have all new pity and sympathy...no, make that empathy for stupid people. My brain is in a fog and just doesn't do what I tell it to these days, and it's very frustrating. I have a difficult time concentrating, trouble formulating complex ideas or thoughts, etc. This is a known side effect of the drugs I'm taking (and has more to do with the steroid, Decadron, even than it does with the chemo, although "chemobrain" is a very real phenomenon) and unfortunately, it's just something I need to ride out. It will get better, but I appreciate your patience with me.
Ryan is being incredibly supportive of me, and for this I'm grateful. Things are much better in our house these days, and I'm incredibly appreciative.
I'm too tired to say another word. More later!
Love,
Kristina
I spoke with Dr. Rinn about upcoming treatment. We have agreed that I will get a Lupron shot with my last chemo treatment (December 14, and yes I AM counting). Lupron is a drug that will shut down my ovaries and keep me in menopause; this is important because I am ER+ 90% and PR+ 70%. These numbers are very high, even for hormone receptive positive cancers, and it's very important that we prevent my body from creating any more hormones to feed the cancer. Some recent studies imply that keeping hormones out of my body (through ovarian suppression drugs like Lupron or through oopharectomy or hysterectomy, plus hormone inhibiting drugs like tamoxifin or aromatase inhibitors) will be even more important to my long term health than even the chemotherapy. After radiation, I will start an aromatase inhibitor - shown to be much more effective than tamoxifin in my type of cancer - and my doctor has chosen Femara. (More on that later, but I'm pleased with what the research says about it, and feel very comfortable with this decision.)
We also discussed my chemo brain. Folks, I have all new pity and sympathy...no, make that empathy for stupid people. My brain is in a fog and just doesn't do what I tell it to these days, and it's very frustrating. I have a difficult time concentrating, trouble formulating complex ideas or thoughts, etc. This is a known side effect of the drugs I'm taking (and has more to do with the steroid, Decadron, even than it does with the chemo, although "chemobrain" is a very real phenomenon) and unfortunately, it's just something I need to ride out. It will get better, but I appreciate your patience with me.
Ryan is being incredibly supportive of me, and for this I'm grateful. Things are much better in our house these days, and I'm incredibly appreciative.
I'm too tired to say another word. More later!
Love,
Kristina
Saturday, November 12, 2005
Still tired; Farmer's Market Sunday
Well, I am still tired. Dang it! I woke up this morning feeling more hopeful for an energetic day, and it has not happened. I am not bedridden, but small amounts of activity wear me out and I did take a nap today. It is what it is and I'm trying to adapt...and I'm incredibly appreciative of Ryan's efforts to make things easier on Tessa and myself (he's the new King of Laundry, and he has taken great care of me).
Tomorrow Michele, Lori, and I will man (woman?!) a booth at the West Seattle Farmer's Market to solicit donations and to talk about breast cancer with anybody who has questions. Look for us there! I will only be there for a partial day (in part because I'll be tired, no doubt, and in part because it's Derek's birthday and I'm going to stop in on the festivities) but I am really looking forward to jump-starting the fundraising efforts for the Breast Cancer 3-Day. Michele & Lori have done quite a bit of fundraising (Michele is one of the 3-Day's top fundraisers!) but I haven't started...and it feels good to do this.
Love,
Kristina
Tomorrow Michele, Lori, and I will man (woman?!) a booth at the West Seattle Farmer's Market to solicit donations and to talk about breast cancer with anybody who has questions. Look for us there! I will only be there for a partial day (in part because I'll be tired, no doubt, and in part because it's Derek's birthday and I'm going to stop in on the festivities) but I am really looking forward to jump-starting the fundraising efforts for the Breast Cancer 3-Day. Michele & Lori have done quite a bit of fundraising (Michele is one of the 3-Day's top fundraisers!) but I haven't started...and it feels good to do this.
Love,
Kristina
Friday, November 11, 2005
I thought Saturday was my hard day?!
Well, today I find myself "okay" but not in top form...this feels more like a Saturday (what I've come to perceive as my hard day from chemo) than a Friday, and yesterday was the same. I guess this is the cumulative effect sneaking up on me...just when I think I know what to expect, things change. I have additional anti-nausea drugs to take, and I'm laying low, but it's a bit frustrating to have even lower energy levels than usual.
Oh well! Only five more chemos to go....just over a month....I can do this....
Kristina
Oh well! Only five more chemos to go....just over a month....I can do this....
Kristina
Thursday, November 10, 2005
Some sunshine, too; 11 chemo down, 5 to go!
When I picked up Susan from the airport on Saturday night, it was raining cats and dogs, but since then the weather has been almost lovely. I don't mind the sunshine, either!
I had a lovely visit with Susan and Gretchen, and on Sunday night Susan from Issaquah and Michele came to visit for an evening of dessert and wine, as well. I loved sharing these different girlfriends with one another, and I'm so glad that I had the opportunity. We laughed and talked, we drank wine (sure that's a no-no for me but I don't over-indulge), and talked some more.
Here's a picture of Susan, Gretchen, & Myself:
...and here is a picture of Susan reading to Tessa:
More details on the visit when I'm less tired, but I wanted to post at least that much. It was lovely!
And then....yesterday after I dropped Susan off at the airport, I went to chemo. The best part of that is that one more session is complete! 11 down, 5 to go...more than two thirds of the total treatment is finished, and I'm more than halfway through Taxol, and I'll be finished in just a month plus a couple of days. No matter how I look at it, progress has been made. Some doctors don't prescribe as much Taxol as I'm getting, and I know that I'm being really aggressive, and I feel GOOD about that. If there is one cancer cell left in my body, I expect the Taxol to kill it in the next 5 sessions.
As far as my symptoms go, I have one to add: I got a mouth sore for the first time. Dang it. It's tiny, but it's on my tongue and hits my teeth when my tongue moves (often!). I got some prescription lozenges that should help. I'm also getting more and more tired. Whereas neither Ryan nor I intended to have him home right now, the timing has been exactly what I needed. I am really pretty wiped out, and my good days aren't quite as good as they used to be. This too shall pass, and I hope to be reviving at Christmas, but I'm pretty inactive for the most part. (Susan and I did go for a 2 mile walk on Tuesday, and I think that walking is good for me, but I need naps now, and I go to bed ridiculously early, and I just don't have energy to do half of what I'd like to).
Speaking of sleep...I woke up at 1am last night and never got back to sleep. #### Decadron! I know I need it but it really messes with me.
That's all for now...I'm in my PJs and thinking of trying to have a nap. I hope you're all doing well!
Love,
Kristina
I had a lovely visit with Susan and Gretchen, and on Sunday night Susan from Issaquah and Michele came to visit for an evening of dessert and wine, as well. I loved sharing these different girlfriends with one another, and I'm so glad that I had the opportunity. We laughed and talked, we drank wine (sure that's a no-no for me but I don't over-indulge), and talked some more.
Here's a picture of Susan, Gretchen, & Myself:
...and here is a picture of Susan reading to Tessa:
More details on the visit when I'm less tired, but I wanted to post at least that much. It was lovely!
And then....yesterday after I dropped Susan off at the airport, I went to chemo. The best part of that is that one more session is complete! 11 down, 5 to go...more than two thirds of the total treatment is finished, and I'm more than halfway through Taxol, and I'll be finished in just a month plus a couple of days. No matter how I look at it, progress has been made. Some doctors don't prescribe as much Taxol as I'm getting, and I know that I'm being really aggressive, and I feel GOOD about that. If there is one cancer cell left in my body, I expect the Taxol to kill it in the next 5 sessions.
As far as my symptoms go, I have one to add: I got a mouth sore for the first time. Dang it. It's tiny, but it's on my tongue and hits my teeth when my tongue moves (often!). I got some prescription lozenges that should help. I'm also getting more and more tired. Whereas neither Ryan nor I intended to have him home right now, the timing has been exactly what I needed. I am really pretty wiped out, and my good days aren't quite as good as they used to be. This too shall pass, and I hope to be reviving at Christmas, but I'm pretty inactive for the most part. (Susan and I did go for a 2 mile walk on Tuesday, and I think that walking is good for me, but I need naps now, and I go to bed ridiculously early, and I just don't have energy to do half of what I'd like to).
Speaking of sleep...I woke up at 1am last night and never got back to sleep. #### Decadron! I know I need it but it really messes with me.
That's all for now...I'm in my PJs and thinking of trying to have a nap. I hope you're all doing well!
Love,
Kristina
Saturday, November 05, 2005
I don't mind some rainy days
The weather in Seattle is rain, rain, rain this week - everything is dripping wet and the skies have opened up in downpours more times than I can count over the past several days. I don't mind. The change in the weather is a reminder that fall has fully set in, and that winter is around the corner...and with the passing of the seasons I am just that much closer to being done with the nastier parts of my treatment. I can take the rain, because I'm warm and cozy inside our home, and I know that I can handle a little rain in order to make it to spring.
What's more, I have good things to celebrate in the midst of all this rain. Last night, Amy visited from Ohio, and the PEPS gang went out to a great dinner with her. I dressed up in my "going out" clothes and felt semi-fashionable, ate great food (Wild Ginger - YUMMY!), and most importantly enjoyed the company of women that I adore. (Thanks to Heather for driving me, by the way!) It was wonderful to see Amy again, and to spend non-toddler time with my PEPS friends.
And then tonight, it gets even better: Susan from Boston arrives! I'll pick up Susan from the airport late this evening, and then Gretchen will come for breakfast tomorrow, and the three of us (plus Ryan and Tessa, of course) will hang out, chat, and enjoy one another's company. I don't care if it's raining outside - we can drink pots of coffee and enjoy one another, and that sounds like a little slice of heaven. Tessa knows how excited I am, and she's caught the enthusiasm, as well. For the past couple of days when she's woken up she has said "Are Susan and Gretchen here?" as she's excitedly anticipating the visit, too.
I probably won't post much in the next few days, since I will have visitor(s), but you may assume that I am well. I still have nausea (no idea why I'm experiencing so much of that on Taxol, the less toxic of my chemo drugs) and I'm still tired, but I'm relatively happy.
Love,
Kristina
What's more, I have good things to celebrate in the midst of all this rain. Last night, Amy visited from Ohio, and the PEPS gang went out to a great dinner with her. I dressed up in my "going out" clothes and felt semi-fashionable, ate great food (Wild Ginger - YUMMY!), and most importantly enjoyed the company of women that I adore. (Thanks to Heather for driving me, by the way!) It was wonderful to see Amy again, and to spend non-toddler time with my PEPS friends.
And then tonight, it gets even better: Susan from Boston arrives! I'll pick up Susan from the airport late this evening, and then Gretchen will come for breakfast tomorrow, and the three of us (plus Ryan and Tessa, of course) will hang out, chat, and enjoy one another's company. I don't care if it's raining outside - we can drink pots of coffee and enjoy one another, and that sounds like a little slice of heaven. Tessa knows how excited I am, and she's caught the enthusiasm, as well. For the past couple of days when she's woken up she has said "Are Susan and Gretchen here?" as she's excitedly anticipating the visit, too.
I probably won't post much in the next few days, since I will have visitor(s), but you may assume that I am well. I still have nausea (no idea why I'm experiencing so much of that on Taxol, the less toxic of my chemo drugs) and I'm still tired, but I'm relatively happy.
Love,
Kristina
Thursday, November 03, 2005
Finally updating! Brunner's Lodge, Halloween, Chemo #10
Things have been busy, and I haven't made it here to update, but at last I'm checking in.
Some words of thanks:
Thank you to my mom & dad for all that they have done for us lately (that's a long list!).
Thank you to Sara for delivering a meal, for joining Team Kristina, and for tales of a 40 year breast cancer survivor (wahoooo!).
Thank you to the best real estate agent ever, Roy Willanger, for dropping by a card and beautiful bouquet, and for being a friend.
Thank you to Susan for helping to organize yet more meals to come to us.
Thank you to Molly for dropping by a meal yesterday - we will eat it tonight!
Thank you to Marilyn for the delicious curried pork - yummm.
Thank you to Michele, Lori, and Susan for being so incredibly on board with amazing fundraising ideas and commitment to the Breast Cancer 3 Day.
Thank you to Darcy for signing up for the 3 Day and committing to it - it's a big deal to come from Arizona for this event and I'm so grateful.
Thank you to Susie for agreeing to help design T-shirts and a poster for us.
Thank you to Ryan for listening to me and to what I need and for giving me your heart and soul when I need you the most.
Thank you to the thousands of other people I'm certain that I missed on this list!!! I have much to be grateful for.
Brunner's Lodge with the extended family was absolutely wonderful. Everyone chipped in by bringing and making food, and so we had delightful family meals around a big log table (and there's something special about four generations of one family being able to do so), we hot tubbed, we watched the young cousins (Tessa, Caleb, Nicholas, Tyler, and Matthew) forge even deeper bonds, Ryan got to go for a beautiful bike ride through gorgeous country scenes (and though it's the end of the leaf season the colors were still gorgeous - red barns backed by slate and evergreen hills, golden fields, and splashes of vibrant yellow or red trees), and much chit-chatting took place. Brunner's Lodge accomodated our large group very nicely - the older boys loved the fact that there is an air hockey table, a foosball table, and a Casio keyboard to play with, and the younger kids loved the tire swing and regular swings in particular. The lodge was filled with noise with such a large group - but the noises were happy (shouts of glee from the winner of a card game, games of chase, "chefs" prepping the meal, calls of "who needs another glass of wine?" and "anybody want to go for a walk to the river?").
Here's a picture that Mike & Krystal (thanks for sharing!) got on their camera of the whole clan just prior to our leaving on Sunday....note that Tyler is slumped over in his dad's (Don's) arms, because he got a terrible migraine on the last day...poor kid! He's better now but he was in rough shape on Sunday.
Here's the Surface3 in the Brunner's Lodge hot tub, followed by a great shot of Barb and two of her boys (Matthew and Tyler) in the hot tub:
Here's Tessa & Caleb playing air hockey together!
On the last day (Sunday) we went to a roadside fruit stand with the Dahls senior and junior that has expanded for the season to have a petting zoo with farm animals, a "cow train ride" (a tractor pulling cars made of oil cans and painted like cows, but the kids acted like it was Disneyland they had so much fun), and Caleb and Tessa frolicked and laughed and had a great time.
I had highs and lows over the weekend for my own health - Saturday is always my hardest day, and this was no exception. I held in there, though, and I'm SO glad that I went. I am extremely grateful that I am from a family that sticks together in good times and bad, enjoys each others' company, and is willing to cram into a cabin for the joy of one another's company. I hope that next year 100% of us will be there. :-)
Then, when we got back, it was nearly Halloween! Tessa was delighted that Halloween had arrived at last. While Tessa napped, I made two soups (salmon chowder and chunky chicken soup) for the potluck dinner with neighbors, and then Ryan and I carved our pumpkins. Tessa woke up to toasted pumpkin seeds, and knew that the fun was truly beginning when we put the candles out in the pumpkin. Three neighbor families came by for dinner, and Tessa the Tiger delighted in playing with Noah the Cow, Daven the Owl, and Elena the Ballerina Princess. After dinner, we all went out trick-or-treating together (fortunately there was a break in the VERY rainy, miserable weather) and I think that the kids were the hit of the neighborhood. We let Tessa keep a little candy, but we put the rest of it away to give to the doctor's office and Tessa traded it for a hobby horse - our little cowgirl is more in love with horses with each passing day, and she finds this a fair trade. (She'll get one mini chocolate bar per day for five days, and to her that's a lot, so I think she wins on every level.)
Tessa the Tiger:
Four beautiful children, but only the owl (Daven) would look at the camera!:
After Tessa got out of her tiger costume (she was hot!) she wanted the two of us to wear butterfly wings, so we put them on. Here is a picture which I love for my darling daughter, hate for my bloated body....and (drum roll please) which, if you look with a microscope ;-) you can see that my bald head is covered with dark "duck fuzz" hair! Yes, my hair is growing, and though it's only about 3mm long, it is, indeed, a start. I'm told it will not start to thicken until I've completed chemo, but SOMETHING is better than nothing, even if it's hardly anything!
Then, on Tuesday, the highlight of the day was going to the Pump it Up class. Ryan got a day to himself, and Tessa and I went to join Auntie Krystal, Uncle Mike, Caleb, and Josh at the Pump it Up Session, and then Grandpa joined for a while too to see all the fun. Pump it up is an indoor "Arena" just off 405 on 116th in Kirkland, and for $6/kid ($5 each if there are siblings) you get to go with your child into a series of inflated jumping houses. Some are set up like obstacle courses, some are giant slides, some are circular so the kids can run in circles, and there are about 10 or 15 of them total, so the kids just run from one to the other, laughing and giggling and burning off energy. A lot of them require close parental supervision, so I too had to remove my shoes and chase Tessa up and down slides etc....and I must say, I felt a certain amount of pride for keeping up with the chaos, given my chemo-state! (I believe I was the only bald mother there. ;-) ) We will return to this activity, because Tessa just loved it, and it's a great opportunity for her to bond with Caleb, too. (She already adores him, and I love the fact that the cousins have a close relationship. One day baby Josh will be chasing after them, too, of course, but until now he is a happy observer, getting kisses when the kids stop by to check in on him.)
After Pump it Up we went to have lunch with Grammy and the rest of the gang at Grammy & Grandpa's house (thank you!), and then Grammy, Tessa, and I went for our first training walk together. I'm extremely hopeful that my mom will join me on the 3 Day Walk, and she is considering it, so we went down to the club together and walked the track. For the first 1/10 of a mile, Tessa walked with us (carrying her unicorn pony Rose the entire time). For the next 4/10 of a mile, I carried her. Because of the lymphedema risks, I can not carry her in my left arm, so after 4/10 of a mile my right arm was desperately calling for a break, and we called my dad in to watch Tessa while my mom finished up walking in a mile. A mile isn't much, but it's a start (and with Tessa there it's all we could manage). We will bring the jogging stroller next time and so Tessa can hang out with us (we'll bring books and toys, too!).
My friend Michele is hoping that her mom might join the walk with us, too, and that the four of us (Michele, myself, and two moms) will be able to train together occassionally. I like that idea. :-)
Tuesday night, Tessa spend the night at Grammy & Grandpa's, and had her usual wonderful time in doing so. The sleepovers have become more frequent, and are enjoyed by all.
Wednesday, while Tessa played with Grammy & Grandpa (swimming, dance class - she's a star! - time playing with Foster-puppy, and so much more...no wonder Tessa loves her time with Grammy and Grandpa so much, because they treat her like a princess and she has so much fun) I spent the morning doing a few chores, and then going shopping with Michele & Elliott. Unfortunately, I have gained enough weight that some of my clothes have been uncomfortably tight, and so I needed a few long sleeved T-shirts and basic everyday items (ugh...**** chemo/decadron!). Shopping with Michele was fun, though (despite the reason for my need to shop!), and we enjoyed Starbucks (thanks, Shele!), tons of Elliott's smiles, and chatting away.
And then, of course, after my morning, it was time for chemo. I don't dread it the way you might think any more - it goes reasonably easy for me - but chemo is, well, chemo, and I don't look forward to it, either.
I had an interesting conversation with my oncologist about what to do with my ovaries. Up until now, I've believed that they MUST come out and SOON. Well, after further discussion with Dr. Rinn, we may hold off on that. Because I am BRCA- , we don't have reason to suspect that I'm at higher risk for ovarian cancer the way that we would if I were BRCA+. Dr. Rinn has suggested that my body could use time to heal from chemo and radiation, and that there is no rush to do anything as drastic as removing body parts just yet (enough of that is being done anyway!). The alternative is to take Lupron shots, which will keep my body in menopause after I come out of chemo. (This is desireable because I have a cancer that is ER+ - in other words, it feeds on estrogen, and I have a very high score in this category; it's critical that I keep all estrogen out of my body in order to starve the cancer. Shutting down the ovaries shuts down estrogen production.) If I tolerate the Lupron shots well, and work with oncologists to make sure that I don't have any signs of ovarian cancer, I might be able to go for quite some time with my ovaries still in my body. One thought that I have is that when I do reconstruction, and I'm all torn up anyway, I could just take the ovaries out then (we'll see if the docs think that this is too much). In any case, this is new fuel for thought. I will see a gynecological oncologist to help make this decision after I finish radiation. I would like to treat myself as BRCA+ because of my family history and because science understands that they have not yet located all of the possible genetic mutations for breast cancer (they've found two but strongly suspect that there are others) and so I would much prefer to be cautious. It is a fine line between being aggressive (good!) and doing overkill (bad!) in my treatment. I've been really aggressive up until now, and that helps me to sleep at night, but I don't want to do overkill. More research must be done on this subject.
I also discussed the issue of my nausea - which is rather unexpected on this particular chemo regimin, but is very real for me - with my oncologist. She is pretty certain that it is acid reflux from the Decadron (I get so much!) more than a side effect of chemo, and has prescribed Ranitidine to fight it. That would be a nice, simple fix and today I'll start the Ranitidine to hope it works. That might also help with my weight gain...I feel like I need to eat all the time or be really sick, and maybe the Ranitidine will take away the nausea so I don't need to eat comfort food constantly.
Chemo was uneventful this week, which is excellent. My port doesn't cause me any problems, I haven't had any more reactions to the Taxol (thanks to the Decadron, which I otherwise curse...but it IS a good drug), and the nurses are kind. My parents brought Tessa home, and I was glad to wrap my arms around her and welcome her back...it's nice to take a parenting break but I do love my girl and it was even better to have her home with us again.
I will be seeing a physical therapist next week for the minor lymphedema in my hand. It hasn't gone away, and we want to prevent it from getting worse... It's a minor complication as yet, but a complication none-the-less.
Tessa's nose started dripping yesterday, so we'll see if we're on for preschool today. I really hope she's fully healthy....!
Only a few more days until Susan from Boston comes to town, and Gretchen visits, too. I can't wait! My "breast cancer friends" have become "friends" and I can't wait to see them and to enjoy their company.
That, I believe, fully catches all of you up. Sending you my love!
Kristina
Some words of thanks:
Thank you to my mom & dad for all that they have done for us lately (that's a long list!).
Thank you to Sara for delivering a meal, for joining Team Kristina, and for tales of a 40 year breast cancer survivor (wahoooo!).
Thank you to the best real estate agent ever, Roy Willanger, for dropping by a card and beautiful bouquet, and for being a friend.
Thank you to Susan for helping to organize yet more meals to come to us.
Thank you to Molly for dropping by a meal yesterday - we will eat it tonight!
Thank you to Marilyn for the delicious curried pork - yummm.
Thank you to Michele, Lori, and Susan for being so incredibly on board with amazing fundraising ideas and commitment to the Breast Cancer 3 Day.
Thank you to Darcy for signing up for the 3 Day and committing to it - it's a big deal to come from Arizona for this event and I'm so grateful.
Thank you to Susie for agreeing to help design T-shirts and a poster for us.
Thank you to Ryan for listening to me and to what I need and for giving me your heart and soul when I need you the most.
Thank you to the thousands of other people I'm certain that I missed on this list!!! I have much to be grateful for.
Brunner's Lodge with the extended family was absolutely wonderful. Everyone chipped in by bringing and making food, and so we had delightful family meals around a big log table (and there's something special about four generations of one family being able to do so), we hot tubbed, we watched the young cousins (Tessa, Caleb, Nicholas, Tyler, and Matthew) forge even deeper bonds, Ryan got to go for a beautiful bike ride through gorgeous country scenes (and though it's the end of the leaf season the colors were still gorgeous - red barns backed by slate and evergreen hills, golden fields, and splashes of vibrant yellow or red trees), and much chit-chatting took place. Brunner's Lodge accomodated our large group very nicely - the older boys loved the fact that there is an air hockey table, a foosball table, and a Casio keyboard to play with, and the younger kids loved the tire swing and regular swings in particular. The lodge was filled with noise with such a large group - but the noises were happy (shouts of glee from the winner of a card game, games of chase, "chefs" prepping the meal, calls of "who needs another glass of wine?" and "anybody want to go for a walk to the river?").
Here's a picture that Mike & Krystal (thanks for sharing!) got on their camera of the whole clan just prior to our leaving on Sunday....note that Tyler is slumped over in his dad's (Don's) arms, because he got a terrible migraine on the last day...poor kid! He's better now but he was in rough shape on Sunday.
Here's the Surface3 in the Brunner's Lodge hot tub, followed by a great shot of Barb and two of her boys (Matthew and Tyler) in the hot tub:
Here's Tessa & Caleb playing air hockey together!
On the last day (Sunday) we went to a roadside fruit stand with the Dahls senior and junior that has expanded for the season to have a petting zoo with farm animals, a "cow train ride" (a tractor pulling cars made of oil cans and painted like cows, but the kids acted like it was Disneyland they had so much fun), and Caleb and Tessa frolicked and laughed and had a great time.
I had highs and lows over the weekend for my own health - Saturday is always my hardest day, and this was no exception. I held in there, though, and I'm SO glad that I went. I am extremely grateful that I am from a family that sticks together in good times and bad, enjoys each others' company, and is willing to cram into a cabin for the joy of one another's company. I hope that next year 100% of us will be there. :-)
Then, when we got back, it was nearly Halloween! Tessa was delighted that Halloween had arrived at last. While Tessa napped, I made two soups (salmon chowder and chunky chicken soup) for the potluck dinner with neighbors, and then Ryan and I carved our pumpkins. Tessa woke up to toasted pumpkin seeds, and knew that the fun was truly beginning when we put the candles out in the pumpkin. Three neighbor families came by for dinner, and Tessa the Tiger delighted in playing with Noah the Cow, Daven the Owl, and Elena the Ballerina Princess. After dinner, we all went out trick-or-treating together (fortunately there was a break in the VERY rainy, miserable weather) and I think that the kids were the hit of the neighborhood. We let Tessa keep a little candy, but we put the rest of it away to give to the doctor's office and Tessa traded it for a hobby horse - our little cowgirl is more in love with horses with each passing day, and she finds this a fair trade. (She'll get one mini chocolate bar per day for five days, and to her that's a lot, so I think she wins on every level.)
Tessa the Tiger:
Four beautiful children, but only the owl (Daven) would look at the camera!:
After Tessa got out of her tiger costume (she was hot!) she wanted the two of us to wear butterfly wings, so we put them on. Here is a picture which I love for my darling daughter, hate for my bloated body....and (drum roll please) which, if you look with a microscope ;-) you can see that my bald head is covered with dark "duck fuzz" hair! Yes, my hair is growing, and though it's only about 3mm long, it is, indeed, a start. I'm told it will not start to thicken until I've completed chemo, but SOMETHING is better than nothing, even if it's hardly anything!
Then, on Tuesday, the highlight of the day was going to the Pump it Up class. Ryan got a day to himself, and Tessa and I went to join Auntie Krystal, Uncle Mike, Caleb, and Josh at the Pump it Up Session, and then Grandpa joined for a while too to see all the fun. Pump it up is an indoor "Arena" just off 405 on 116th in Kirkland, and for $6/kid ($5 each if there are siblings) you get to go with your child into a series of inflated jumping houses. Some are set up like obstacle courses, some are giant slides, some are circular so the kids can run in circles, and there are about 10 or 15 of them total, so the kids just run from one to the other, laughing and giggling and burning off energy. A lot of them require close parental supervision, so I too had to remove my shoes and chase Tessa up and down slides etc....and I must say, I felt a certain amount of pride for keeping up with the chaos, given my chemo-state! (I believe I was the only bald mother there. ;-) ) We will return to this activity, because Tessa just loved it, and it's a great opportunity for her to bond with Caleb, too. (She already adores him, and I love the fact that the cousins have a close relationship. One day baby Josh will be chasing after them, too, of course, but until now he is a happy observer, getting kisses when the kids stop by to check in on him.)
After Pump it Up we went to have lunch with Grammy and the rest of the gang at Grammy & Grandpa's house (thank you!), and then Grammy, Tessa, and I went for our first training walk together. I'm extremely hopeful that my mom will join me on the 3 Day Walk, and she is considering it, so we went down to the club together and walked the track. For the first 1/10 of a mile, Tessa walked with us (carrying her unicorn pony Rose the entire time). For the next 4/10 of a mile, I carried her. Because of the lymphedema risks, I can not carry her in my left arm, so after 4/10 of a mile my right arm was desperately calling for a break, and we called my dad in to watch Tessa while my mom finished up walking in a mile. A mile isn't much, but it's a start (and with Tessa there it's all we could manage). We will bring the jogging stroller next time and so Tessa can hang out with us (we'll bring books and toys, too!).
My friend Michele is hoping that her mom might join the walk with us, too, and that the four of us (Michele, myself, and two moms) will be able to train together occassionally. I like that idea. :-)
Tuesday night, Tessa spend the night at Grammy & Grandpa's, and had her usual wonderful time in doing so. The sleepovers have become more frequent, and are enjoyed by all.
Wednesday, while Tessa played with Grammy & Grandpa (swimming, dance class - she's a star! - time playing with Foster-puppy, and so much more...no wonder Tessa loves her time with Grammy and Grandpa so much, because they treat her like a princess and she has so much fun) I spent the morning doing a few chores, and then going shopping with Michele & Elliott. Unfortunately, I have gained enough weight that some of my clothes have been uncomfortably tight, and so I needed a few long sleeved T-shirts and basic everyday items (ugh...**** chemo/decadron!). Shopping with Michele was fun, though (despite the reason for my need to shop!), and we enjoyed Starbucks (thanks, Shele!), tons of Elliott's smiles, and chatting away.
And then, of course, after my morning, it was time for chemo. I don't dread it the way you might think any more - it goes reasonably easy for me - but chemo is, well, chemo, and I don't look forward to it, either.
I had an interesting conversation with my oncologist about what to do with my ovaries. Up until now, I've believed that they MUST come out and SOON. Well, after further discussion with Dr. Rinn, we may hold off on that. Because I am BRCA- , we don't have reason to suspect that I'm at higher risk for ovarian cancer the way that we would if I were BRCA+. Dr. Rinn has suggested that my body could use time to heal from chemo and radiation, and that there is no rush to do anything as drastic as removing body parts just yet (enough of that is being done anyway!). The alternative is to take Lupron shots, which will keep my body in menopause after I come out of chemo. (This is desireable because I have a cancer that is ER+ - in other words, it feeds on estrogen, and I have a very high score in this category; it's critical that I keep all estrogen out of my body in order to starve the cancer. Shutting down the ovaries shuts down estrogen production.) If I tolerate the Lupron shots well, and work with oncologists to make sure that I don't have any signs of ovarian cancer, I might be able to go for quite some time with my ovaries still in my body. One thought that I have is that when I do reconstruction, and I'm all torn up anyway, I could just take the ovaries out then (we'll see if the docs think that this is too much). In any case, this is new fuel for thought. I will see a gynecological oncologist to help make this decision after I finish radiation. I would like to treat myself as BRCA+ because of my family history and because science understands that they have not yet located all of the possible genetic mutations for breast cancer (they've found two but strongly suspect that there are others) and so I would much prefer to be cautious. It is a fine line between being aggressive (good!) and doing overkill (bad!) in my treatment. I've been really aggressive up until now, and that helps me to sleep at night, but I don't want to do overkill. More research must be done on this subject.
I also discussed the issue of my nausea - which is rather unexpected on this particular chemo regimin, but is very real for me - with my oncologist. She is pretty certain that it is acid reflux from the Decadron (I get so much!) more than a side effect of chemo, and has prescribed Ranitidine to fight it. That would be a nice, simple fix and today I'll start the Ranitidine to hope it works. That might also help with my weight gain...I feel like I need to eat all the time or be really sick, and maybe the Ranitidine will take away the nausea so I don't need to eat comfort food constantly.
Chemo was uneventful this week, which is excellent. My port doesn't cause me any problems, I haven't had any more reactions to the Taxol (thanks to the Decadron, which I otherwise curse...but it IS a good drug), and the nurses are kind. My parents brought Tessa home, and I was glad to wrap my arms around her and welcome her back...it's nice to take a parenting break but I do love my girl and it was even better to have her home with us again.
I will be seeing a physical therapist next week for the minor lymphedema in my hand. It hasn't gone away, and we want to prevent it from getting worse... It's a minor complication as yet, but a complication none-the-less.
Tessa's nose started dripping yesterday, so we'll see if we're on for preschool today. I really hope she's fully healthy....!
Only a few more days until Susan from Boston comes to town, and Gretchen visits, too. I can't wait! My "breast cancer friends" have become "friends" and I can't wait to see them and to enjoy their company.
That, I believe, fully catches all of you up. Sending you my love!
Kristina
Friday, October 28, 2005
Brunner's Lodge!
This morning we're getting ready to leave for Brunner's Lodge in Leavenworth, and we can't wait. The entire Dahl clan (20+ of us) are meeting there for fun and laughter, and I can't wait to see everyone and to enjoy the fun of watching the kids play together. I won't be updating the blog while I'm gone, but you may be certain that we will be having a good time! I'll be home Sunday.
I still feel pretty good after my last chemo, although I'm expecting the Saturday crash that usually occurs. I can live with this...I'll be surrounded by family, in great surroundings, and it's nothing that sleep can't fix.
I am also very excited to report that I'm receiving emails from friends who are seriously considering joining us on the 3 Day Walk this summer. Perhaps when I get home I'll see that others have signed up on our team webpage... (hint, hint). :-)
Must run - lots of packing to finish before we head out the door. Love to all!
Kristina
I still feel pretty good after my last chemo, although I'm expecting the Saturday crash that usually occurs. I can live with this...I'll be surrounded by family, in great surroundings, and it's nothing that sleep can't fix.
I am also very excited to report that I'm receiving emails from friends who are seriously considering joining us on the 3 Day Walk this summer. Perhaps when I get home I'll see that others have signed up on our team webpage... (hint, hint). :-)
Must run - lots of packing to finish before we head out the door. Love to all!
Kristina
Wednesday, October 26, 2005
9 down, 7 to go
I'm home from a "good" chemo session, and all is well. Lori, Michele, and I brainstormed for a couple of hours about how to fundraise for the 3 Day Walk (more than just hitting up our friends and family for donations, and reaching into the larger community), and it felt good to do such a thing. I enjoy their company immensely, and it was a fun girlfriend afternoon despite the setting.
Lymphedema: No worries right now. The swelling is minor, and it doesn't have any hot spots, so the nurse is not concerned. I'll elevate it when possible, and that should do the trick for now. Fingers crossed....
Love,
K
Lymphedema: No worries right now. The swelling is minor, and it doesn't have any hot spots, so the nurse is not concerned. I'll elevate it when possible, and that should do the trick for now. Fingers crossed....
Love,
K
Tuesday, October 25, 2005
Survivors and lymphedema questions
Today, on two seperate occassions, women approached me and said, "Are you in chemo for breast cancer?" and then shared that they are survivors; coincidentally, each of them is five years out. The both took my hand, looked into my eyes, and said, "You can do this." Truly, it was inspiring - they were both vibrant, smiling women with full heads of hair, and it was incredible to feel their strength and to watch the sparkle in their eyes as they shared their victory with me. I am so grateful to these strangers for sharing their hope with me - thank you, whoever you are, ladies!
I have more serious concerns about lymphedema today. I can no longer see the veins on the back of my left hand, and my knuckles on that hand are poorly defined. Crap. I have a call in to the doctor to see what must be done; it seems that waiting another day isn't such a good idea any more. Hopefully it's just a minor infection ("cellulitis" I think it's called) that can be completely cured with antibiotics...but I will not panic until I am given reason to do so! THANK YOU to Gretchen for giving me some "real world" things to look for so that I knew to follow up.
Insertion here: I just got a call from the nurse at my oncologist's office. She said they'll take a look at me tomorrow, as the next 24 hours won't make a difference. I'm concerned, but we'll just have to see how it goes.
Today has been a full mommy day. I have vowed that on Mondays and Tuesdays, my "best" chemo cycle days, that I will do the maximum possible with and for Tessa, since on the other days I am so comparably low energy, and since I'm so crabby and tired in the evenings especially. (Picture me lying in bed, flipping through bad TV channels, unable to sleep, and telling Tessa "Go find Daddy!" in a grouchy voice, starting between 5pm and 7pm most days. UGH. This is not my best vision of myself, but there it is.) Anyway, today we took Tessa and her friend Derek to the zoo, and we had a marvelous time. Both kids were fabulous, and loved one another's company... as well as the excitement of the zoo, of course. Afterwards, the four of us went to Red Mill Burgers and treated ourselves to really good burgers... decadent, unhealthy, but oh so tasty! It was a great morning, and a good time was had by all.
Tessa didn't nap, which is par for the course these days. At 3:30 we'll head to PEPS, and then we've been invited to dinner at the Huycke's, which we are really looking forward to. A lovely day.
Tomorrow is number 9 of 16. My mom is taking Tessa, and Ryan is getting a chance to go for a bike ride and do some things on his own; Michele (who is using precious time while her MIL takes care of Elliott) is going to take me to chemo, where we will meet Lori (who is using precious vacation time to attend chemo with me), and the three of us will talk about fundraising options for the 3 Day Walk. I hope that tomorrow will be uneventful in terms of the chemo itself, and that despite the clinical setting, I will be able to fully enjoy the company of my girlfriends.
Love to all,
Kristina
I have more serious concerns about lymphedema today. I can no longer see the veins on the back of my left hand, and my knuckles on that hand are poorly defined. Crap. I have a call in to the doctor to see what must be done; it seems that waiting another day isn't such a good idea any more. Hopefully it's just a minor infection ("cellulitis" I think it's called) that can be completely cured with antibiotics...but I will not panic until I am given reason to do so! THANK YOU to Gretchen for giving me some "real world" things to look for so that I knew to follow up.
Insertion here: I just got a call from the nurse at my oncologist's office. She said they'll take a look at me tomorrow, as the next 24 hours won't make a difference. I'm concerned, but we'll just have to see how it goes.
Today has been a full mommy day. I have vowed that on Mondays and Tuesdays, my "best" chemo cycle days, that I will do the maximum possible with and for Tessa, since on the other days I am so comparably low energy, and since I'm so crabby and tired in the evenings especially. (Picture me lying in bed, flipping through bad TV channels, unable to sleep, and telling Tessa "Go find Daddy!" in a grouchy voice, starting between 5pm and 7pm most days. UGH. This is not my best vision of myself, but there it is.) Anyway, today we took Tessa and her friend Derek to the zoo, and we had a marvelous time. Both kids were fabulous, and loved one another's company... as well as the excitement of the zoo, of course. Afterwards, the four of us went to Red Mill Burgers and treated ourselves to really good burgers... decadent, unhealthy, but oh so tasty! It was a great morning, and a good time was had by all.
Tessa didn't nap, which is par for the course these days. At 3:30 we'll head to PEPS, and then we've been invited to dinner at the Huycke's, which we are really looking forward to. A lovely day.
Tomorrow is number 9 of 16. My mom is taking Tessa, and Ryan is getting a chance to go for a bike ride and do some things on his own; Michele (who is using precious time while her MIL takes care of Elliott) is going to take me to chemo, where we will meet Lori (who is using precious vacation time to attend chemo with me), and the three of us will talk about fundraising options for the 3 Day Walk. I hope that tomorrow will be uneventful in terms of the chemo itself, and that despite the clinical setting, I will be able to fully enjoy the company of my girlfriends.
Love to all,
Kristina
Monday, October 24, 2005
Autumn days
Today, as I near the end of the chemo cycle, I'm relatively (for my "new" me) energetic, but feeling nauseated. What's with that? I also have a very minor cut on my left hand (the surgery side) and I am worried about swelling in my arm (a possible sign of lymphedema , which is always a risk for mastectomy patients). Hopefully the careful washing of this minor cut, plus Neosporin and a Bandaid, will prevent any problems... but I have my eye on it. It's hard to tell if my swelling is of concern, since ALL of me is swollen from the steroids. Nothing is the end of the world right now, but these things concern me, of course.
On to happier thoughts...
My 3 Day Walk team is amazing, and has already begun fundraising. Susan will join us, as well, and other friends have expressed an interest. The more the merrier - please, sign up! We are going to try to come up with some creative ways to fundraise, and we will let you know how things go. I feel like some of the negative energy I've received from the whole breast cancer diagnosis can be channeled into something more positive with this walk, and I am delighted at the good that is already coming out of it.
Tessa and I had a good morning, and I feel I've given her more of the attention that she deserves today. This morning, Natasha, Derek, and baby Paloma came over for a playdate, and then Tessa and I ran errands together; now, Tessa is having a little quiet time and then we will go to visit Kathleen and Elena for a playdate at their house.
The date that my friend *susan* will visit from Boston ever approaches, and I'm thrilled. *susan*, Gretchen, and I will be able to talk in person, and to share each others' lives, and this is something to treasure. I am very fortunate to have met these two amazing women, who inspire me every day, and remind me that breast cancer does not define any of us.
Because people have requested it, here are a couple pictures. Tessa and cousin Caleb had an amazing time visiting the pumpkin patch a week or so ago; then, this weekend, Ryan (with the help of brother Steve - thank you!) raked leaves and allowed Tessa to cavort and wade in them, and we got some pictures of that, too. Beautiful autumn days are for enjoying, and that's what we've been doing.
Tessa and Caleb holding hands:
Tessa in our leaf pile:
On to happier thoughts...
My 3 Day Walk team is amazing, and has already begun fundraising. Susan will join us, as well, and other friends have expressed an interest. The more the merrier - please, sign up! We are going to try to come up with some creative ways to fundraise, and we will let you know how things go. I feel like some of the negative energy I've received from the whole breast cancer diagnosis can be channeled into something more positive with this walk, and I am delighted at the good that is already coming out of it.
Tessa and I had a good morning, and I feel I've given her more of the attention that she deserves today. This morning, Natasha, Derek, and baby Paloma came over for a playdate, and then Tessa and I ran errands together; now, Tessa is having a little quiet time and then we will go to visit Kathleen and Elena for a playdate at their house.
The date that my friend *susan* will visit from Boston ever approaches, and I'm thrilled. *susan*, Gretchen, and I will be able to talk in person, and to share each others' lives, and this is something to treasure. I am very fortunate to have met these two amazing women, who inspire me every day, and remind me that breast cancer does not define any of us.
Because people have requested it, here are a couple pictures. Tessa and cousin Caleb had an amazing time visiting the pumpkin patch a week or so ago; then, this weekend, Ryan (with the help of brother Steve - thank you!) raked leaves and allowed Tessa to cavort and wade in them, and we got some pictures of that, too. Beautiful autumn days are for enjoying, and that's what we've been doing.
Tessa and Caleb holding hands:
Tessa in our leaf pile:
Friday, October 21, 2005
The beginning of something big
Today I signed up to walk the Breast Cancer 3 Day Walk for the Susan G. Komen Foundation. It will take place next August, and like the title says, it's a 3 day walk, covering 20 miles a day (60 total), all in the name of breast cancer fundraising. I am blessed to walk on a team - my friend Lori is captaining the team, and Michele has already signed up too, and I hope that others will sign up to walk with us as well.
This FEELS big to me. Right now, I couldn't walk three miles without being tired for days (wait...I'm tired for days anyway....LOL!) and 60 miles seems like a huge challenge. It also feels like an exciting goal, though. I will be done with chemo in December, and radiation in February, and from there I hope to get stronger and stronger and stronger. There are great studies out about how exercise positively impacts breast cancer patients, and this will keep me motivated to keep going. It's actually very exciting to think of completing such a walk, as it seems very symbollic of healing.
This is big on another level, too: I am going to do some serious fighting back against breast cancer. It is unacceptable that one in eight women will be diagnosed with this horrible disease. I look around at my friends, family, and especially beloved Tessa, and I find the "one in eight" number entirely unacceptable. Something must be done, and *I* must do it. I am not a doctor or a medical research expert, but I can fundraise, so that is where I will focus my efforts. I want to put my heart and soul into this, and make a big difference.
There is a link to the right on this page, newly updated, to my fundraising page. Stay tuned for more details! The actual event isn't until August 2006, but as of today, I've paid my entry fee, and I'm committed. I hope that you'll think about joining me, either in walking and fundraising, or by donating.
Love,
Kristina
This FEELS big to me. Right now, I couldn't walk three miles without being tired for days (wait...I'm tired for days anyway....LOL!) and 60 miles seems like a huge challenge. It also feels like an exciting goal, though. I will be done with chemo in December, and radiation in February, and from there I hope to get stronger and stronger and stronger. There are great studies out about how exercise positively impacts breast cancer patients, and this will keep me motivated to keep going. It's actually very exciting to think of completing such a walk, as it seems very symbollic of healing.
This is big on another level, too: I am going to do some serious fighting back against breast cancer. It is unacceptable that one in eight women will be diagnosed with this horrible disease. I look around at my friends, family, and especially beloved Tessa, and I find the "one in eight" number entirely unacceptable. Something must be done, and *I* must do it. I am not a doctor or a medical research expert, but I can fundraise, so that is where I will focus my efforts. I want to put my heart and soul into this, and make a big difference.
There is a link to the right on this page, newly updated, to my fundraising page. Stay tuned for more details! The actual event isn't until August 2006, but as of today, I've paid my entry fee, and I'm committed. I hope that you'll think about joining me, either in walking and fundraising, or by donating.
Love,
Kristina
Thursday, October 20, 2005
A burst of energy
Today I have been much more energized than in the past few weeks. As a result, my house looks better than it has in a long time - I've vacuumed, scrubbed the bathroom tile, washed and put away laundry, scrubbed the kitchen sink, and done lots of other, similar chores that I'd been putting off for too long. Ryan took Tessa to preschool and afterwards they went to Starbucks together, so I had the morning mostly to myself, and it felt good to be productive. This afternoon, I'm shooing Ryan out the door to have some time for himself (much needed and deserved, and I know he welcomes it) and Susie & Nina are coming over for a playdate.
I know that I hit bottom a couple of weeks ago, and things looked very bleak to me, but things are definitely improving. I am glad I didn't stay down long, and I'm working hard at trying to find the light and optimism that I know exists. I - we - intend to come out of this stronger than ever.
I know that by the evening I will be exhausted again - this is inevitable - but that's okay. I will take energy where I can find it!
Love,
Kristina
I know that I hit bottom a couple of weeks ago, and things looked very bleak to me, but things are definitely improving. I am glad I didn't stay down long, and I'm working hard at trying to find the light and optimism that I know exists. I - we - intend to come out of this stronger than ever.
I know that by the evening I will be exhausted again - this is inevitable - but that's okay. I will take energy where I can find it!
Love,
Kristina
Wednesday, October 19, 2005
8 chemo down, 8 to go
I am home from chemo, and no matter how you look at it now I'm half way done. I've been in chemo since July 27 (12 weeks + one "rest" week when I was sick) and I will be done December 14 if things stay on track (8 more weeks) so I'm over the numbers hump AND the time hump.
My doctor is pleased how I'm doing. I asked if it was possible to lower the Decadron dosage since I'm doing so well with Taxol (no more allergic reactions) but the fear is that I might have another allergic reaction if we lower the Decadron (steroid), so it stays where it's at. Of course this is the right thing to do but also unfortunate as I'm bloated (can't wear my rings or bracelets - my watch may be next to go) and it interferes with my sleep...but these things are better than the alternative, and now that I've explored that alternative with a doctor I truly trust I will stop wondering about it.
I am more tired than ever before - the "cumulative effect" is really catching up with me. It's not something I can just push through at this point - at the end of the day I'm crabby and impatient because I'm just so tired I can't think. In this sense, it is very fortunate that Ryan is home with me, because he's REALLY helping to pick up extra time with Tessa to allow me to vege out as I need to. The doctor says that this is what I must do - it's no time to play at being strong when I don't feel that way - and reminds me that this is tempory. Being more than half way done does help me with this perspective...it wasn't that long ago that I couldn't imagine having completed 8 rounds of chemo, but I've done it, and I know I can do 8 more. I'm cutting back on everything - less caring for Tessa, less housework (Ryan is picking up slack with both of these things), and also less time at the computer, blogging or doing email, etc.
Things are better than they were last week...calmer. Ryan and I are adjusting to the new routine of having him at home, and there is (once again) room for optimism and hope. Phew.
Good night!
Love,
Kristina
My doctor is pleased how I'm doing. I asked if it was possible to lower the Decadron dosage since I'm doing so well with Taxol (no more allergic reactions) but the fear is that I might have another allergic reaction if we lower the Decadron (steroid), so it stays where it's at. Of course this is the right thing to do but also unfortunate as I'm bloated (can't wear my rings or bracelets - my watch may be next to go) and it interferes with my sleep...but these things are better than the alternative, and now that I've explored that alternative with a doctor I truly trust I will stop wondering about it.
I am more tired than ever before - the "cumulative effect" is really catching up with me. It's not something I can just push through at this point - at the end of the day I'm crabby and impatient because I'm just so tired I can't think. In this sense, it is very fortunate that Ryan is home with me, because he's REALLY helping to pick up extra time with Tessa to allow me to vege out as I need to. The doctor says that this is what I must do - it's no time to play at being strong when I don't feel that way - and reminds me that this is tempory. Being more than half way done does help me with this perspective...it wasn't that long ago that I couldn't imagine having completed 8 rounds of chemo, but I've done it, and I know I can do 8 more. I'm cutting back on everything - less caring for Tessa, less housework (Ryan is picking up slack with both of these things), and also less time at the computer, blogging or doing email, etc.
Things are better than they were last week...calmer. Ryan and I are adjusting to the new routine of having him at home, and there is (once again) room for optimism and hope. Phew.
Good night!
Love,
Kristina
Tuesday, October 18, 2005
Still trying to make sense of things
Well, it's Tuesday, and I'm still trying to make sense of things. Ryan has been off for a week, and we are doing okay but have certainly not found our groove. We're both in individual therapy and are waiting for an appt with the marriage therapist. We're working hard on sorting things out.
I have been on antibiotics for a while (done with them now) and my cold is diminished to occassional coughs, and lots of nose blowing. This is a major improvement, and I expect to be on track for chemo tomorrow.
The thing about all of this is that it is just so tiring. I really wish I could snap my fingers and make it all better. The cumulative effects of the chemo are catching up with me in terms of fatigue, and I think because of that it's harder for me to stay caught up with even simple things.
I feel like if I could just get one uninterrupted night of sleep (no insomnia), and really focus on what needs to be done, maybe I could make some inroads, but instead, I'm operating in a fog.
In the middle of this fog, there are bright spots. PEPS is coming over today to hang out, and there are play dates planned, and things are in the works to utilize the Ummelina Spa gift certificate that I received this summer. Last night Ryan planned a date for us, and we had a nice dinner. One day at a time.
Oh, and since I mentioned it here - despite the flexibility and quick money, I have decided that this is not the right time for me to work. I think that when I've got my head screwed on straight it would be an excellent opportunity, and I may do it then, but right now I just need to focus on the day to day and the healing that needs to occur. I only have enough energy for that right now, unfortunately, and I'm going to take my body's cues.
I hope everyone else is enjoying this foggy day - fall is here!
Kristina
I have been on antibiotics for a while (done with them now) and my cold is diminished to occassional coughs, and lots of nose blowing. This is a major improvement, and I expect to be on track for chemo tomorrow.
The thing about all of this is that it is just so tiring. I really wish I could snap my fingers and make it all better. The cumulative effects of the chemo are catching up with me in terms of fatigue, and I think because of that it's harder for me to stay caught up with even simple things.
I feel like if I could just get one uninterrupted night of sleep (no insomnia), and really focus on what needs to be done, maybe I could make some inroads, but instead, I'm operating in a fog.
In the middle of this fog, there are bright spots. PEPS is coming over today to hang out, and there are play dates planned, and things are in the works to utilize the Ummelina Spa gift certificate that I received this summer. Last night Ryan planned a date for us, and we had a nice dinner. One day at a time.
Oh, and since I mentioned it here - despite the flexibility and quick money, I have decided that this is not the right time for me to work. I think that when I've got my head screwed on straight it would be an excellent opportunity, and I may do it then, but right now I just need to focus on the day to day and the healing that needs to occur. I only have enough energy for that right now, unfortunately, and I'm going to take my body's cues.
I hope everyone else is enjoying this foggy day - fall is here!
Kristina
Friday, October 14, 2005
Trying to sort it all out
Yesterday I went to my first therapy session; today Ryan is at his second therapy session; next week we have our first marriage counseling session. Three therapists for a family seems a little excessive, but there you have it. We have some big issues to work through, and we are not too proud to get help.
Ryan has officially started short term disability (3 months) for his depression. This is unpaid leave, but maintains our benefits. We are relying on the assistance of my parents to get us through this time financially, and are indebted to them for their kindness.
I may have an opportunity (I know only about the position through Michele, I haven't yet followed up) to do some grading for the Bellevue School District. This may be an ideal way to bring in some money - it's $20 an hour, I can do it from home, the hours are flexible, and I can work as much or little as I please. I'm not sure if there are still positions open but I will follow up soon. My thought is that I would do 10 hours a week, and then evaluate from there.
Tessa is still sick with her cold. She has coughed all night, so today I'll put in a call to the doctor to see what we can do for her. She's sleeping now (very late for her) because she was so fitful last night...poor girl.
Kristina
Ryan has officially started short term disability (3 months) for his depression. This is unpaid leave, but maintains our benefits. We are relying on the assistance of my parents to get us through this time financially, and are indebted to them for their kindness.
I may have an opportunity (I know only about the position through Michele, I haven't yet followed up) to do some grading for the Bellevue School District. This may be an ideal way to bring in some money - it's $20 an hour, I can do it from home, the hours are flexible, and I can work as much or little as I please. I'm not sure if there are still positions open but I will follow up soon. My thought is that I would do 10 hours a week, and then evaluate from there.
Tessa is still sick with her cold. She has coughed all night, so today I'll put in a call to the doctor to see what we can do for her. She's sleeping now (very late for her) because she was so fitful last night...poor girl.
Kristina
Thursday, October 13, 2005
Breast Cancer Loss
Ronne's Blog
When I was first diagnosed, the first breast cancer survivor to reach out to me was a woman named Ronne who also frequented a parenting online site that I frequently visited. She gave me questions to ask my doctors, encouraged me, and offered a listening ear. She was strong, brave, courageous, and eager to do whatever it took to fight this thing. She had a good attitude, excellent support, and good medical care.
Within the past day or so (I don't yet know details) she has passed away. Her breast cancer metastasized, and there was nothing more to be done than to keep her comfortable and to help her to pass peacefully. She leaves behind a loving husband, a toddler daughter, and countless other people who loved her.
This is sometimes the reality of breast cancer. I pray that it is not my reality. Ronne's cancer is not my cancer, and her death does not predict my own, but it's another hit, closer to home, about what it is that I'm fighting for. As Ronne said to me, "Please keep in mind that my story is not a typical one. I was diagnosed
late and was already stage IIIB by the time the docs figured it out. Early
stage breast cancer is very treatable and you are very likely going to be
ok, but the next year or so will be challenging for you and your family. I
wish you all the best." It's not just about bodily mutilation and horrific treatment plans...there are worse things than that. Ronne had to experience the worst of it. (To my stage IIIB friends....Ronne's end was not typical either - she's in a malpractice suit for some of the early treatment she received. My stage III friends are to grow old alongside me!!!!)
Ronne, may you rest in peace. Your life touched mine, and I am grateful to you. God Bless.
Please send Ronne's family an extra thought and prayer today,
Kristina
When I was first diagnosed, the first breast cancer survivor to reach out to me was a woman named Ronne who also frequented a parenting online site that I frequently visited. She gave me questions to ask my doctors, encouraged me, and offered a listening ear. She was strong, brave, courageous, and eager to do whatever it took to fight this thing. She had a good attitude, excellent support, and good medical care.
Within the past day or so (I don't yet know details) she has passed away. Her breast cancer metastasized, and there was nothing more to be done than to keep her comfortable and to help her to pass peacefully. She leaves behind a loving husband, a toddler daughter, and countless other people who loved her.
This is sometimes the reality of breast cancer. I pray that it is not my reality. Ronne's cancer is not my cancer, and her death does not predict my own, but it's another hit, closer to home, about what it is that I'm fighting for. As Ronne said to me, "Please keep in mind that my story is not a typical one. I was diagnosed
late and was already stage IIIB by the time the docs figured it out. Early
stage breast cancer is very treatable and you are very likely going to be
ok, but the next year or so will be challenging for you and your family. I
wish you all the best." It's not just about bodily mutilation and horrific treatment plans...there are worse things than that. Ronne had to experience the worst of it. (To my stage IIIB friends....Ronne's end was not typical either - she's in a malpractice suit for some of the early treatment she received. My stage III friends are to grow old alongside me!!!!)
Ronne, may you rest in peace. Your life touched mine, and I am grateful to you. God Bless.
Please send Ronne's family an extra thought and prayer today,
Kristina
Wednesday, October 12, 2005
7 down, 9 to go
Today's chemo was uneventful (other than the fact that it ran late...again). I now have an antibiotic for my cold (which has led to some sinus infection type symtoms), but I was allowed to continue chemo, which is a good thing. I'm down to single digits for the number remaining, and there is something be said for that. Also, time-wise, assuming that I don't miss any more sessions, I'm half way through now...so I'm on the downhill. Phew.
Kristina
Kristina
Chemo today
I am scheduled to meet with the oncologist at 2:30, and to begin chemo at 3:30. I am hoping that my blood counts are high enough for me to attend chemo this week - my cold is particularly nasty and it hasn't disappeared yet. I'll update the results when I know them.
Kristina
Kristina
Monday, October 10, 2005
Radiation
I met with a radiation oncologist this morning. It is official; I will have seven weeks of radiation starting on Jan. 2. Though I'm officially in a "gray zone" for deciding if I will have radiation, the fact that I had 10 cm of DCIS with only a 2mm margin at the chest wall, combined with 2-3 primary IDC tumors, makes my risk of recurrance higher at the chest wall. The radiation oncologist and I agree that radiation is the way to fight this.
The road seems never ending, but I'm confident that I'm making the right decision. If a tumor occurs in the chest wall, there is an 80% chance of metastasis. I owe it to myself to fight that possibility to the best of my ability.
I will be eligible for reconstruction 6 months after the end of radiation, so I hope to plan a DIEP reconstruction, along with a prophylactic mastectomy and reconstruction on the other side, next summer (August) or early fall. I am not eligible for implants after this radiation, so that decides that. (I was leaning toward DIEP anyway, and this decides it.)
Kristina
The road seems never ending, but I'm confident that I'm making the right decision. If a tumor occurs in the chest wall, there is an 80% chance of metastasis. I owe it to myself to fight that possibility to the best of my ability.
I will be eligible for reconstruction 6 months after the end of radiation, so I hope to plan a DIEP reconstruction, along with a prophylactic mastectomy and reconstruction on the other side, next summer (August) or early fall. I am not eligible for implants after this radiation, so that decides that. (I was leaning toward DIEP anyway, and this decides it.)
Kristina
Sunday, October 09, 2005
Colds and fevers
Yesterday, since the first time I can remember, I stayed in bed all day. I had feverish feelings followed by chills (but the fever never went over 99.7 degrees), a headache that was like a vice, a sore throat, coughing, insomnia, and the runniest and most congested nose I can ever remember having. The fatigue with all of this...yuck.
Today it feels slightly better. I'm going to get in the shower and go about my day, which will be an improvement over yesterday.
The doctor on call told me to just watch the fever and take care of myself, so that is what I'm doing.
Kristina
Today it feels slightly better. I'm going to get in the shower and go about my day, which will be an improvement over yesterday.
The doctor on call told me to just watch the fever and take care of myself, so that is what I'm doing.
Kristina
Friday, October 07, 2005
CT Scan Results
I got a message from my oncologist that the CT scan looks the same as the one in June, and that she's not concerned. She will review it with me when I go in on Wednesday for chemo.
I have a really bad cold. I'm hoping it goes away in time to be better for the next round of chemo so my counts are high and I don't have to miss any more chemo weeks and bump the finish date out further.
My bottom lashes are almost gone, and half of each eyebrow is almost gone. My appearance is changing again.
Thank you to all of you for your love and support - it has been overwhelming, in a good way, in the past day. As I said, I will continue to update medical/physical stuff here, and I appreciate your love and prayers for both that and our personal problems.
Love,
Kristina
I have a really bad cold. I'm hoping it goes away in time to be better for the next round of chemo so my counts are high and I don't have to miss any more chemo weeks and bump the finish date out further.
My bottom lashes are almost gone, and half of each eyebrow is almost gone. My appearance is changing again.
Thank you to all of you for your love and support - it has been overwhelming, in a good way, in the past day. As I said, I will continue to update medical/physical stuff here, and I appreciate your love and prayers for both that and our personal problems.
Love,
Kristina
Thursday, October 06, 2005
Taking a break
I have decided to take a break from blogging. I will update anything medical as it goes on so that anyone interested can check on my health, but I don't have the energy right now to share some of my more private thoughts.
Ryan's depression and my breast cancer's onset are too much to bear right now - the combination is more than I know how to handle gracefully. Ryan may need to leave his job, and the possibility of unemployment is more than I know what to do with, as our savings are almost non-existant. We will get by with the help of family, and we will look at liquidating assets (our house) as a possibility to keep us afloat; I will look at returning to work; Ryan will look for other employment. Ryan and I are not supporting one another well, and the tension in our house is so thick you can cut it with a knife. These things, combined with my ongoing treatment, make it hard for me to be the inspiring, optimistic person that I wish to be. I wish I could give more right now, but I can not. Ryan and I are seeking individual counseling, along with marriage counseling. We will get through this, one way or another.
That is all I can say on the subject. Thank you for keeping us in your thoughts and prayers. I will regain my zest and optimism soon, but right now I need to take a break from sharing the details of my life.
Thank you for understanding.
Kristina
Ryan's depression and my breast cancer's onset are too much to bear right now - the combination is more than I know how to handle gracefully. Ryan may need to leave his job, and the possibility of unemployment is more than I know what to do with, as our savings are almost non-existant. We will get by with the help of family, and we will look at liquidating assets (our house) as a possibility to keep us afloat; I will look at returning to work; Ryan will look for other employment. Ryan and I are not supporting one another well, and the tension in our house is so thick you can cut it with a knife. These things, combined with my ongoing treatment, make it hard for me to be the inspiring, optimistic person that I wish to be. I wish I could give more right now, but I can not. Ryan and I are seeking individual counseling, along with marriage counseling. We will get through this, one way or another.
That is all I can say on the subject. Thank you for keeping us in your thoughts and prayers. I will regain my zest and optimism soon, but right now I need to take a break from sharing the details of my life.
Thank you for understanding.
Kristina
Wednesday, October 05, 2005
Six down, ten to go
No allergic reactions today. Ryan came home sick and has perhaps the same flu my mom has. Tessa was able to spend the morning with Linda & Lexi, and the afternoon with Michele & Elliott. She had a wonderful time, and all is well with her.
I had my CT scan this morning, and the tentative agreement is that it looks good. However, they didn't have my old scans to compare things, so we're waiting for those in order to get the definitive results.
I discussed Taxotere vs Taxol with Dr. Rinn. I feel good about our decision to go with Taxol, and I feel I understand the studies better.
I came home to find dinner from Beth. Thanks, Beth.
Tomorrow we'll go to preschool and we have a playdate scheduled for the afternoon. HOpefully she chooses tomorrow to nap in the middle of those activities!
Love to all,
Kristina
PS Sorry it's so short - I just got home, and it was SUCH a busy day. I must get sleep in preparation for another busy day tomorrow.
I had my CT scan this morning, and the tentative agreement is that it looks good. However, they didn't have my old scans to compare things, so we're waiting for those in order to get the definitive results.
I discussed Taxotere vs Taxol with Dr. Rinn. I feel good about our decision to go with Taxol, and I feel I understand the studies better.
I came home to find dinner from Beth. Thanks, Beth.
Tomorrow we'll go to preschool and we have a playdate scheduled for the afternoon. HOpefully she chooses tomorrow to nap in the middle of those activities!
Love to all,
Kristina
PS Sorry it's so short - I just got home, and it was SUCH a busy day. I must get sleep in preparation for another busy day tomorrow.
Tuesday, October 04, 2005
Gratitude and debt
I am in debt to my friends and family more than I will ever be able to repay. I know this as a certain fact, and it alternately makes me feel terribly guilty and incredibly loved (actually, usually it makes me feel both of those things at the same time).
Since I was diagnosed, Susan has arranged with a small army to have meals delivered to our home two or three times per week. The meals have kept coming, and I haven't begun to thank people for them. Actually, I haven't written a thank you card in months - I really, honestly intend to, but I just haven't figured out a way to get the energy to do so. This makes me mad at myself because with all of the effort people have made to keep us loved and fed, the least I can do is write a little note and get it in the mail. I know that my manners are abysmal on this count, and I am grateful to all of you who have not only fed us but also forgiven my poor etiquette.
In addition to the meals, I have received cards and packages in the mail with greater frequency than ever before in my life. I have received books (both on and off the topic of breast cancer), chocolates, breast cancer awareness information (pins, etc.), small toys for Tessa, a CD narrated by Maya Angelou, notecards (which I SHOULD be using for thank you notes), inspirational verses, baked goods, hats, scarves, gift certificates, and more. My mom has watched Tessa weekly so that I can go to chemo, and has helped when I have been sick. Friends helped to throw Ryan a birthday party, to hire a housekeeper to help me on occasion, and to send me to yoga class. I am truly blessed.
Additionally, I have had help with Tessa when I have asked for it. Today, I sent a message to some West Seattle friends asking for help tomorrow (my mom has been wonderful in taking care of Tessa on chemo days, but she's sick) and within minutes I received several responses from friends who tried to make it sound like it was absolutely no big deal to take on a toddler for hours and hours. (Michele & Linda, thank you thank you thank you!) What would I have done without this support - take Tessa to chemo with me?
Today, instead of writing thank you cards, I'm going to tackle a mountain of laundry and mop the kitchen floor while Tessa sleeps. This morning, instead of writing thank you cards, I went to Coffee to a Tea with Tessa, then went for a "leaf walk" (our dining room table is now decorated with a basket of leaves personally selected by Tessa) and then came home to eat lunch and read stories before Tessa's quiet time. I sincerely hope and pray that these "normal" types of activities mean that even though I don't have anywhere near my usual energy most days (today I feel good, hence the activity) days like today make it up to Tessa. I choose to give that energy to Tessa where I can so that she does not have a cancer-flavored-childhood, and I am indebted to those who have been helping me for understanding this.
I know who you are, and your help has been an instrumental part of my healing. Thank you to all of you. One day, I hope I can repay you your many kindnesses.
With love,
Kristina
Since I was diagnosed, Susan has arranged with a small army to have meals delivered to our home two or three times per week. The meals have kept coming, and I haven't begun to thank people for them. Actually, I haven't written a thank you card in months - I really, honestly intend to, but I just haven't figured out a way to get the energy to do so. This makes me mad at myself because with all of the effort people have made to keep us loved and fed, the least I can do is write a little note and get it in the mail. I know that my manners are abysmal on this count, and I am grateful to all of you who have not only fed us but also forgiven my poor etiquette.
In addition to the meals, I have received cards and packages in the mail with greater frequency than ever before in my life. I have received books (both on and off the topic of breast cancer), chocolates, breast cancer awareness information (pins, etc.), small toys for Tessa, a CD narrated by Maya Angelou, notecards (which I SHOULD be using for thank you notes), inspirational verses, baked goods, hats, scarves, gift certificates, and more. My mom has watched Tessa weekly so that I can go to chemo, and has helped when I have been sick. Friends helped to throw Ryan a birthday party, to hire a housekeeper to help me on occasion, and to send me to yoga class. I am truly blessed.
Additionally, I have had help with Tessa when I have asked for it. Today, I sent a message to some West Seattle friends asking for help tomorrow (my mom has been wonderful in taking care of Tessa on chemo days, but she's sick) and within minutes I received several responses from friends who tried to make it sound like it was absolutely no big deal to take on a toddler for hours and hours. (Michele & Linda, thank you thank you thank you!) What would I have done without this support - take Tessa to chemo with me?
Today, instead of writing thank you cards, I'm going to tackle a mountain of laundry and mop the kitchen floor while Tessa sleeps. This morning, instead of writing thank you cards, I went to Coffee to a Tea with Tessa, then went for a "leaf walk" (our dining room table is now decorated with a basket of leaves personally selected by Tessa) and then came home to eat lunch and read stories before Tessa's quiet time. I sincerely hope and pray that these "normal" types of activities mean that even though I don't have anywhere near my usual energy most days (today I feel good, hence the activity) days like today make it up to Tessa. I choose to give that energy to Tessa where I can so that she does not have a cancer-flavored-childhood, and I am indebted to those who have been helping me for understanding this.
I know who you are, and your help has been an instrumental part of my healing. Thank you to all of you. One day, I hope I can repay you your many kindnesses.
With love,
Kristina
Monday, October 03, 2005
Monday morning
I haven't been online much at all this weekend. I think I needed some time away from reflection and from putting on my happy face...even I can only do so much of that.
Last week really took it out of me. Ryan's job is filled with issues (thank you for keeping him in your thoughts and prayers) that fill each of us with stress, and then my allergic reaction really threw me for a loop. I felt really wiped out, perhaps psychologically as well as physically, all weekend, and had a hard time catching my (metaphorical) breath.
However, we I did participate in two great activities this weekend. First, on Saturday, Ryan, Tessa and I joined our neighbors Kathleen, Jim, and Elena and we went to Remlinger Farms for the day. The girls (Elena is Tessa's age) had so much fun that their joy and enthusiasm was contagious, and though for some of it I merely stood on the sidelines and cheered (unlike Ryan, who had as much fun in the hay jump as Tessa did) it was a really fun experience. Tessa got to ride on a pony twice, as well as many other activities, and her boldness, enthusiasm, and joy brought pride and love to my heart.
Here's a picture of Tessa, face alight with glee, in the petting farm area:
...and here is a picture of Tessa and Elena onstage at the puppet show, playing banana percussion:
...and here is a picture of Tessa and Elena in the canoe ride.
Then, on Sunday, Ryan very kindly took care of Tessa most of the day, and I went to a ladies' tea at Linda's house along with the PEPS group. The tea was lovely - complete with scones, crustless sandwiches, and frilly china - and the company was wonderful. The PEPS kids are all so active and noisy that our PEPS meetings aren't exactly restful oases of conversation for the adults, so having time for conversation was a real treat.
Now, it is Monday, and Ryan has been at work for an hour already. Tessa and I will run some errands this morning, perhaps try for a play date, and such goes the week. I am trying to keep Wednesday out of my thoughts, but it's hard. This Wednesday is my rescheduled CT scan...they're going back to look at my lungs to see if the nodules found in June have changed. This is terrifying, but I am trying to be calm about it and to avoid freaking out before I even have any information. And then, of course, on Wednesday there is also chemo....which I hate to think about because of my reaction last time. I think that after Wednesday I will feel much better, however...I just need the CT scan to be normal and the chemo to go well. If they both went well, it would be better than winning the lottery, actually.
And one more thought, on the subject of early menopause: YUCK. At night, I have hot flashes at least hourly. This wouldn't be such a bad thing, except that they wake me up, and afterwards I'm often chilled. I am taking a sleeping pill, but it is powerless in the face of hot flashes, and I find my hot-flash induced insomnia truly troubling. Whatta mess.
I hope that this week finds you well, free of allergic reactions, and filled with joy with friends and family.
Love,
Kristina
Last week really took it out of me. Ryan's job is filled with issues (thank you for keeping him in your thoughts and prayers) that fill each of us with stress, and then my allergic reaction really threw me for a loop. I felt really wiped out, perhaps psychologically as well as physically, all weekend, and had a hard time catching my (metaphorical) breath.
However, we I did participate in two great activities this weekend. First, on Saturday, Ryan, Tessa and I joined our neighbors Kathleen, Jim, and Elena and we went to Remlinger Farms for the day. The girls (Elena is Tessa's age) had so much fun that their joy and enthusiasm was contagious, and though for some of it I merely stood on the sidelines and cheered (unlike Ryan, who had as much fun in the hay jump as Tessa did) it was a really fun experience. Tessa got to ride on a pony twice, as well as many other activities, and her boldness, enthusiasm, and joy brought pride and love to my heart.
Here's a picture of Tessa, face alight with glee, in the petting farm area:
...and here is a picture of Tessa and Elena onstage at the puppet show, playing banana percussion:
...and here is a picture of Tessa and Elena in the canoe ride.
Then, on Sunday, Ryan very kindly took care of Tessa most of the day, and I went to a ladies' tea at Linda's house along with the PEPS group. The tea was lovely - complete with scones, crustless sandwiches, and frilly china - and the company was wonderful. The PEPS kids are all so active and noisy that our PEPS meetings aren't exactly restful oases of conversation for the adults, so having time for conversation was a real treat.
Now, it is Monday, and Ryan has been at work for an hour already. Tessa and I will run some errands this morning, perhaps try for a play date, and such goes the week. I am trying to keep Wednesday out of my thoughts, but it's hard. This Wednesday is my rescheduled CT scan...they're going back to look at my lungs to see if the nodules found in June have changed. This is terrifying, but I am trying to be calm about it and to avoid freaking out before I even have any information. And then, of course, on Wednesday there is also chemo....which I hate to think about because of my reaction last time. I think that after Wednesday I will feel much better, however...I just need the CT scan to be normal and the chemo to go well. If they both went well, it would be better than winning the lottery, actually.
And one more thought, on the subject of early menopause: YUCK. At night, I have hot flashes at least hourly. This wouldn't be such a bad thing, except that they wake me up, and afterwards I'm often chilled. I am taking a sleeping pill, but it is powerless in the face of hot flashes, and I find my hot-flash induced insomnia truly troubling. Whatta mess.
I hope that this week finds you well, free of allergic reactions, and filled with joy with friends and family.
Love,
Kristina
Thursday, September 29, 2005
An uneventful day
Today was relatively uneventful - especially compared to yesterday. I slept in for the first time since I can't remember, I ran some errands, I had lunch with Michele & Elliott, and I went to the hospital for my Neulasta shot. I was informed, once I got there, that I didn't need a Neulasta shot after Taxol....arrrrrghhhhh! The person who had booked them for me was a temp and very unaware. I calmly and politely suggested that someone needed to train him to ask questions etc.
My parents had Tessa for most of the day, which was a blessing - I was just emotionally wiped out from the events of yesterday. They came here for dinner and we enjoyed the wonderful soup that Jenny dropped off yesterday (thanks, Jenny), some salad, some bread, and (at my dad's request) some frozen pizza. Okay, he didn't request "frozen" pizza but it was in the freezer and I was too cheap to order out!
Now Tessa is bathed and in PJs and Ryan is tucking her into bed. I will soon go to bed myself, with the hope of sleeping through the night for once. I was very sad to miss girls' night out tonight - I can't remember the last time I was out of the house to do something fun in the evening - but since my parents left just a few minutes ago and I'm so tired I just can't make it. Sorry, PEPS friends!
Love to all,
Kristina
My parents had Tessa for most of the day, which was a blessing - I was just emotionally wiped out from the events of yesterday. They came here for dinner and we enjoyed the wonderful soup that Jenny dropped off yesterday (thanks, Jenny), some salad, some bread, and (at my dad's request) some frozen pizza. Okay, he didn't request "frozen" pizza but it was in the freezer and I was too cheap to order out!
Now Tessa is bathed and in PJs and Ryan is tucking her into bed. I will soon go to bed myself, with the hope of sleeping through the night for once. I was very sad to miss girls' night out tonight - I can't remember the last time I was out of the house to do something fun in the evening - but since my parents left just a few minutes ago and I'm so tired I just can't make it. Sorry, PEPS friends!
Love to all,
Kristina
Wednesday, September 28, 2005
Allergic reaction
I left for chemo (taking the Swedish free shuttle) at 1:30pm, and I JUST got home. Things were running a little late, but the real reason I'm so late is that I had an allergic reaction to the Taxol. At first the nurse (who had to sit with me and watch me for signs of reactio) said, "Your lips and cheeks are flushed - are you okay?" and I said that I felt fine...but then my throat started to close up, and my chest got tight. When I told them that, my cubby filled with nurses and they hooked me up to oxygen and gave me Decadron (this steroid counteracts the allergic effect) and somebody called my oncologist, Dr. Rinn. By that point my heart rate had jumped from 70 to 126...not a good sign. They had to wait for the steroid to really kick in, and then everything had to be done very slowly after that as they watched me for signs of further allergic reactions.
Mysteriously, I stayed calm. It was very frightening, however, and staying calm took so much energy that I felt like I was in a fog where I couldn't reach anyone; it was difficult to speak. Not an experience I'd care to repeat.
Sigh. I had a bad feeling about allergic reactions, and I'd been stressed about it for a few days, but I had imagined the worst about Herceptin, not Taxol. Anyway, my intuition wasn't far off, and that's interesting.
My parents kept Tessa overnight - they had to go to Target to get her PJs - which is a blessing because Ryan was able to come and sit with me, and we didn't leave the hospital until after 10:30 (Tessa never could have made it that long). I miss my baby girl - I'd really love to stare at her sleeping face right now - but this will help me tomorrow morning before my mom brings her here, too, and it's all for the best. Sigh.
This does not impact further treatment. I will take Decadron in advance of my Taxol next time, and I will be closely monitored, but that's it.
Five chemo down, eleven to go. One Taxol/Herceptin finished, eleven to go.
I have GOT to get some sleep. Good night, all.
Love,
Kristina
Mysteriously, I stayed calm. It was very frightening, however, and staying calm took so much energy that I felt like I was in a fog where I couldn't reach anyone; it was difficult to speak. Not an experience I'd care to repeat.
Sigh. I had a bad feeling about allergic reactions, and I'd been stressed about it for a few days, but I had imagined the worst about Herceptin, not Taxol. Anyway, my intuition wasn't far off, and that's interesting.
My parents kept Tessa overnight - they had to go to Target to get her PJs - which is a blessing because Ryan was able to come and sit with me, and we didn't leave the hospital until after 10:30 (Tessa never could have made it that long). I miss my baby girl - I'd really love to stare at her sleeping face right now - but this will help me tomorrow morning before my mom brings her here, too, and it's all for the best. Sigh.
This does not impact further treatment. I will take Decadron in advance of my Taxol next time, and I will be closely monitored, but that's it.
Five chemo down, eleven to go. One Taxol/Herceptin finished, eleven to go.
I have GOT to get some sleep. Good night, all.
Love,
Kristina
Back to Chemo
Today I return to my chemo schedule. The week "off" hasn't felt like a vacation, unfortunately... I kept wishing that I was advancing on the chemo list, instead of sitting still. I am anxious to move forward toward the end of treatment, and treading water made me feel tired without actually making progress.
However, today I will sit in the big chair again and learn what the next part of my treatment feels like. Today, in addition to the anti-emetics that I am given (a whole handful of drugs designed with the sole purpose of keeping my lunch where it belongs) I will be given a new chemo drug, Taxol, and the exciting new drug Herceptin (which is not a chemo drug, but a "biological agent" which attacks only my particular type of cancer, which is Her2/neu+). The Taxol is given weekly for 12 weeks (last day: December 14) but the Herceptin will be given weekly for a year or more (there are some studies in the works that say that perhaps 3 years of treatment with Herceptin is preferable; my oncologist says we'll cross that line when we get there).
Taxol's predicted side effects are loss of eyebrows and eyelashes (which have thinned, but still look relatively normal on the AC treatment), and possible neuropathy in the hands, feet and face (tingling and numbness). I have been taking Glucosamine for the neuropathy; nothing helps keep hair, though. In positive news with Taxol, it should have lessened side effects for nausea, and I should feel better in general than I have on the AC, although the fatigue effects are cumulative. My hair may also start to grow (on my head, not eyebrows etc...isn't that strange?) on the Taxol, though it won't "really" grow until I'm done with chemo. My hope is that for Easter I will have no visible scalp and at least really short hair, but we will see.
Herceptin's primary side effect is a weakening of the heart muscle. I had to have a MUGA test on my heart prior to beginning treatment to make sure that my heart was strong enough for Herceptin; indeed, my heart started this strong. I am told that I will have periodic MUGAs as I go through treatment to make sure that my heart muscle is strong enough to continue with the Herceptin. Some people have vomiting as a side effect of the first Herceptin treatment, but subsequent treatments tend to be easier...it's just the first one that can be so nasty. (That's okay in general, but as I face my first treatment it doesn't sound particularly fun.) The only thing that really scares me today - but it's a biggie - is that some people have a fatally allergic reaction to the Herceptin. The percentage is absolutely miniscule, and they will administer it very slowly and give me Benedryl as a precaution...but let's just say that I will feel better when the whole thing is over with and I'm writing about it from the other side.
Herceptin, despite my fears, is a VERY exciting drug. It was only released in June - the month I was diagnosed - for early stage breast cancer treatment, and the medical community fell into an excited uproar about it because it is so promising. The use of Herceptin has cut the rate of recurrance by 52%. No other drug has done anything nearly that amazing for Her2/neu+ cancers. Forget any studies that you have read about prognosis, because Herceptin changes all of that. Herceptin is the reason that I'm so optimistic about my long term survival - it really does seem like a wonder-drug. (If you do a Google search on it, or go to the Komen.org or breastcancer.org websites, you'll see all kinds of great information about it. Her2/neu+ breast cancer used to be a "bad" kind to get...now it's a "good" kind.)
For friends and family this might be a bit of an overshare, but as there are other newly diagnosed women who read my blog to learn about treatment, I'll share a bit more...
It looks like I'm at the start of menopause, or "chemopause." I expected my period last week, and instead I'm getting hot flashes. They're bearable, though not fun. I'm not breaking out in a sweat, I just get a feverish feeling that rushes over my body - particularly my upper body and face - that subsides pretty quickly. The worst part is that it interrupts my sleep - I wake up roasting hot, throw off the covers, and then as the hot flash exits I feel cold an have to bundle myself up again. Anyway, it's very strange to think of myself as a 36 year old in menopause; we know that mine is not just temporary (chemo induced menopause, nicknamed "chemopause," often ends some time after treatment in women who were not already close to natural menopause) because on my long list of things to do is to schedule an appointment to have an oopharectomy/hysterectomy. Joy, joy, fun fun.
Though it's amazing how well I have tolerated chemo, it's also amazing to me how foreign my body has become to me. I have symptoms that are textbook for AC treatment, including:
- sleeplessness (I can't sleep without drugs any more, and even those aren't working now)
- metallic taste in my mouth
- fatigue
- hot flashes
- gritty eyes that tear up a lot
- food aversions
- nausea that makes me need to eat every couple of hours
- loss of libido
- loss of hair (obviously!)
- painful constipation
- dry skin (something I've never experienced before)
- chemobrain...I feel like I can't remember anything, and I've dropped about 50 IQ points.
This Christmas I certainly hope to be celebrating the end of all of this. I still need to figure out what kind of surgery to schedule for the winter (oopharectomy, hysterectomy, or both), and whether I need to do radiation (usually five days a week for six weeks), and what kind of hormone therapy (possibly Femara, an aromatase inhibitor) to start....but finishing chemo will be a big, big milestone.
And on that note, I need to go take my medications and get ready for my day. I hope that my "medical update" is helpful to you in understanding all of this, and answers some of the questions people have been asking me.
Love,
Kristina
However, today I will sit in the big chair again and learn what the next part of my treatment feels like. Today, in addition to the anti-emetics that I am given (a whole handful of drugs designed with the sole purpose of keeping my lunch where it belongs) I will be given a new chemo drug, Taxol, and the exciting new drug Herceptin (which is not a chemo drug, but a "biological agent" which attacks only my particular type of cancer, which is Her2/neu+). The Taxol is given weekly for 12 weeks (last day: December 14) but the Herceptin will be given weekly for a year or more (there are some studies in the works that say that perhaps 3 years of treatment with Herceptin is preferable; my oncologist says we'll cross that line when we get there).
Taxol's predicted side effects are loss of eyebrows and eyelashes (which have thinned, but still look relatively normal on the AC treatment), and possible neuropathy in the hands, feet and face (tingling and numbness). I have been taking Glucosamine for the neuropathy; nothing helps keep hair, though. In positive news with Taxol, it should have lessened side effects for nausea, and I should feel better in general than I have on the AC, although the fatigue effects are cumulative. My hair may also start to grow (on my head, not eyebrows etc...isn't that strange?) on the Taxol, though it won't "really" grow until I'm done with chemo. My hope is that for Easter I will have no visible scalp and at least really short hair, but we will see.
Herceptin's primary side effect is a weakening of the heart muscle. I had to have a MUGA test on my heart prior to beginning treatment to make sure that my heart was strong enough for Herceptin; indeed, my heart started this strong. I am told that I will have periodic MUGAs as I go through treatment to make sure that my heart muscle is strong enough to continue with the Herceptin. Some people have vomiting as a side effect of the first Herceptin treatment, but subsequent treatments tend to be easier...it's just the first one that can be so nasty. (That's okay in general, but as I face my first treatment it doesn't sound particularly fun.) The only thing that really scares me today - but it's a biggie - is that some people have a fatally allergic reaction to the Herceptin. The percentage is absolutely miniscule, and they will administer it very slowly and give me Benedryl as a precaution...but let's just say that I will feel better when the whole thing is over with and I'm writing about it from the other side.
Herceptin, despite my fears, is a VERY exciting drug. It was only released in June - the month I was diagnosed - for early stage breast cancer treatment, and the medical community fell into an excited uproar about it because it is so promising. The use of Herceptin has cut the rate of recurrance by 52%. No other drug has done anything nearly that amazing for Her2/neu+ cancers. Forget any studies that you have read about prognosis, because Herceptin changes all of that. Herceptin is the reason that I'm so optimistic about my long term survival - it really does seem like a wonder-drug. (If you do a Google search on it, or go to the Komen.org or breastcancer.org websites, you'll see all kinds of great information about it. Her2/neu+ breast cancer used to be a "bad" kind to get...now it's a "good" kind.)
For friends and family this might be a bit of an overshare, but as there are other newly diagnosed women who read my blog to learn about treatment, I'll share a bit more...
It looks like I'm at the start of menopause, or "chemopause." I expected my period last week, and instead I'm getting hot flashes. They're bearable, though not fun. I'm not breaking out in a sweat, I just get a feverish feeling that rushes over my body - particularly my upper body and face - that subsides pretty quickly. The worst part is that it interrupts my sleep - I wake up roasting hot, throw off the covers, and then as the hot flash exits I feel cold an have to bundle myself up again. Anyway, it's very strange to think of myself as a 36 year old in menopause; we know that mine is not just temporary (chemo induced menopause, nicknamed "chemopause," often ends some time after treatment in women who were not already close to natural menopause) because on my long list of things to do is to schedule an appointment to have an oopharectomy/hysterectomy. Joy, joy, fun fun.
Though it's amazing how well I have tolerated chemo, it's also amazing to me how foreign my body has become to me. I have symptoms that are textbook for AC treatment, including:
- sleeplessness (I can't sleep without drugs any more, and even those aren't working now)
- metallic taste in my mouth
- fatigue
- hot flashes
- gritty eyes that tear up a lot
- food aversions
- nausea that makes me need to eat every couple of hours
- loss of libido
- loss of hair (obviously!)
- painful constipation
- dry skin (something I've never experienced before)
- chemobrain...I feel like I can't remember anything, and I've dropped about 50 IQ points.
This Christmas I certainly hope to be celebrating the end of all of this. I still need to figure out what kind of surgery to schedule for the winter (oopharectomy, hysterectomy, or both), and whether I need to do radiation (usually five days a week for six weeks), and what kind of hormone therapy (possibly Femara, an aromatase inhibitor) to start....but finishing chemo will be a big, big milestone.
And on that note, I need to go take my medications and get ready for my day. I hope that my "medical update" is helpful to you in understanding all of this, and answers some of the questions people have been asking me.
Love,
Kristina
Subscribe to:
Posts (Atom)
