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
Saturday, November 05, 2005
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
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