It's Saturday at 9:05 and I will be in bed in a moment - I'm a tired girl. We had a good day today - Alki Bakery this morning, where we ran into Artie & Anna and had a nice visit, then a trip to Whale Tale Park where we ran into Natasha, Steve, Derek, and beautiful baby Paloma, then home to make cream of mushroom soup for lunch (from scratch - very easy actually) before Tessa's nap, then a few chores and making Susie's potato salad recipe (also easy), then to the Shogren's for a lovely BBQ. I didn't actually "do" much of anything, but at 6:30 I was looking at my watch and thinking of going to bed. What's with that?!
As Wednesday creeps closer, I am starting to dread chemo. I dread the poison going into my veins, and how I know I will feel as a result. I am trying to be positive about the whole thing, but in the end I'm just positively glad that next Wednesday is my last Adriamycin/Cytoxin chemo, and I'll be glad to be done with it (because I'm hoping/expecting the Taxol treatments to be easier). I know I've done well up until now but I'm tired of it, tired of feeling poisoned, tired of being tired. I will buck up and just do it, and I'm trying to have a good attitude, but that's hard.
A real update tomorrow or the next day...but I'm off to bed. Goodnight, all!
Kristina
Saturday, September 03, 2005
Thursday, September 01, 2005
Pajamas
The thing about chemo that most people think of, I think, is that people on chemo (in addition to being bald) spend most of their time laying down, hopefully not throwing up, but lounging in pajamas day and night and not moving much as they deal with the ill effects on their bodies. This, at least, is what I envisioned when I thought of myself on chemo. I thought I'd be trying to nibble on crackers while I lay in bed a lot of the time, watching television or something, and hoping that Tessa wouldn't mind if we just read stories all day.
For me, nothing could be further from the truth, though of course I don't have to tell you that if you read this blog regularly! Chemo has certainly slowed me down, but bed is the last place you'll find me, except during the usual hours (from about 10pm to 6am on most days). I'm not doing any marathons, but I'm not in my pajamas, either.
Except today, it's 10:04, and I'm still in my pajamas. I've been online looking at salad plates (my friend Susan L. is looking for some and I've joined the online search just for the heck of it), I've sent some email, looked at some websites, and now I'm updating here. It feels decadent! Ryan took Tessa to Grammy's, and Tessa and Grammy will have the usually wonderful time of going to Wiggle Worms class, visitng the pet store, having Chinese food with Grandpa, playing with Caleb and Mike, and all the rest. I have done laundry, and unloaded the dishwasher, and I have a list as long as my arm of things I could or should do (some of which I will actually do, I swear!) but right now I'm being a bum and enjoying it.
I don't want to slow down to a pajama pace for long - it makes me feel ill just to think of it - but I do appreciate the opportunity to slow down sometimes when I need it. I feel lucky that I'm able to do so today.
I hope that you get some down time today, too.
Love,
Kristina
For me, nothing could be further from the truth, though of course I don't have to tell you that if you read this blog regularly! Chemo has certainly slowed me down, but bed is the last place you'll find me, except during the usual hours (from about 10pm to 6am on most days). I'm not doing any marathons, but I'm not in my pajamas, either.
Except today, it's 10:04, and I'm still in my pajamas. I've been online looking at salad plates (my friend Susan L. is looking for some and I've joined the online search just for the heck of it), I've sent some email, looked at some websites, and now I'm updating here. It feels decadent! Ryan took Tessa to Grammy's, and Tessa and Grammy will have the usually wonderful time of going to Wiggle Worms class, visitng the pet store, having Chinese food with Grandpa, playing with Caleb and Mike, and all the rest. I have done laundry, and unloaded the dishwasher, and I have a list as long as my arm of things I could or should do (some of which I will actually do, I swear!) but right now I'm being a bum and enjoying it.
I don't want to slow down to a pajama pace for long - it makes me feel ill just to think of it - but I do appreciate the opportunity to slow down sometimes when I need it. I feel lucky that I'm able to do so today.
I hope that you get some down time today, too.
Love,
Kristina
Wednesday, August 31, 2005
growing up
Tessa has her first household task - a chore that she does each day with joy. She wants to help the family - we often hear her say "Mommy, Tessa can do it!" or "I want to help!" and we realized that, indeed, she can help. Her first chore, that she helped to choose, is to feed Mo. Every morning and every night, she says "We have to feed Mozart! I can do it!" and she rushes to his tub of food and doles some out into his bowl. He has learned that she is his food source, and will come and wait patiently until she's got it figured out. She pets him and says "I love my precious kitty," and she is just so proud of herself.
We are proud of our little helper, too - of her desire to be a part of the way this family works, and to learn new things.
Love,
Kristina
PS As I type this, I can hear Tessa on the baby monitor. Her latest statement has me laughing: "I love you, but I NEED coffee." Now where has she heard that before? LOL
We are proud of our little helper, too - of her desire to be a part of the way this family works, and to learn new things.
Love,
Kristina
PS As I type this, I can hear Tessa on the baby monitor. Her latest statement has me laughing: "I love you, but I NEED coffee." Now where has she heard that before? LOL
Tuesday, August 30, 2005
Small victories
Tonight, when Ryan gets home, dinner will nearly be on the table - we're having grilled salmon (my "traditional" simple lemon pepper recipe), Susie's home-made potato salad recipe, corn on the cob, and brocolli. Oh, and a bottle of wine (just a little, really, I promise!) that Molly gave us, and chocolate chip cookies for dessert. That I baked. By myself. ;-)
Three months ago these things would not have been worthy of comment. These days, I'm proud of myself and I'm bragging. Could it be that I'm finally getting it together?!
Kristina
Three months ago these things would not have been worthy of comment. These days, I'm proud of myself and I'm bragging. Could it be that I'm finally getting it together?!
Kristina
Healthy Tessa, Okay Kristina
Well, yesterday Tessa had a long nap (which she made up for by attempting to avoid sleep forever last night....asleep at 10:30pm and awake at 5:50am!) and her rest seems to have recovered her. No more runny nose, not crabby...so we're up and at'em.
This morning we hung out and actually did little things around the house (laundry and other nonsense) before heading to PEPS at Marilyn's house around 9:30. We hung out there for a couple of hours having a lovely time with friends (Tessa's and mine), and Tessa played very independently (THANK YOU, little one!) which allowed me some couch time to chat with my girlfriends. After that, we went to Zatz'a'Better'Bagel for lunch (where Tessa can watch the carwash across the street - to her, this is a fine resturant with a view!) and then we walked to the library to return some books. This might not sound like a very energetic day, but in my new regimen this is actually quite a lot of energy to expend and I'm quite proud of myself for making it.
When we got home, I did some more laundry, unloaded the dishwasher, read Tessa stories, and now I'm here for a few moments before a new friend, Katherine, comes to visit for a bit while Tessa (hopefully) naps.
In my own physical health...
Chemo is a strange beast. It feels like my molars are made of metal and my mouth tastes terrible and feels strange. My body feels like I've been drinking Clorox or some other such poison - it's an all-over feeling, not isolated to my digestive system....I just feel systemically poisoned. I only had the one day of nausea, which I can live with, but the poisoning just doesn't seem to fade. In new news, my nose hairs seem to have gone the way of the hair on my head (gone). This would not be interesting to me except that now I always have a drippy nose....apparently nose hair serves a purpose, and that purpose is no longer being met!
Overall, though, this is a good day, and I hope for more like it. I'm able to be a decent mother, I'm visiting with friends (old and new) and I'm getting some chores in. It could certainly be worse.
Love,
Kristina
This morning we hung out and actually did little things around the house (laundry and other nonsense) before heading to PEPS at Marilyn's house around 9:30. We hung out there for a couple of hours having a lovely time with friends (Tessa's and mine), and Tessa played very independently (THANK YOU, little one!) which allowed me some couch time to chat with my girlfriends. After that, we went to Zatz'a'Better'Bagel for lunch (where Tessa can watch the carwash across the street - to her, this is a fine resturant with a view!) and then we walked to the library to return some books. This might not sound like a very energetic day, but in my new regimen this is actually quite a lot of energy to expend and I'm quite proud of myself for making it.
When we got home, I did some more laundry, unloaded the dishwasher, read Tessa stories, and now I'm here for a few moments before a new friend, Katherine, comes to visit for a bit while Tessa (hopefully) naps.
In my own physical health...
Chemo is a strange beast. It feels like my molars are made of metal and my mouth tastes terrible and feels strange. My body feels like I've been drinking Clorox or some other such poison - it's an all-over feeling, not isolated to my digestive system....I just feel systemically poisoned. I only had the one day of nausea, which I can live with, but the poisoning just doesn't seem to fade. In new news, my nose hairs seem to have gone the way of the hair on my head (gone). This would not be interesting to me except that now I always have a drippy nose....apparently nose hair serves a purpose, and that purpose is no longer being met!
Overall, though, this is a good day, and I hope for more like it. I'm able to be a decent mother, I'm visiting with friends (old and new) and I'm getting some chores in. It could certainly be worse.
Love,
Kristina
Monday, August 29, 2005
Oh well
Well, it's always something... and it looks like TK has come down with a case of the sniffles. She's doing relatively well, but we are currently avoiding anybody in chemotheraphy (myself excluded, I suppose!), and newborn babies. What a drag - I hope that this doesn't last long for all of our sakes!
We're about to do an art project to make the day go by. Glitter and glue - what could be more fun for a sit still project when you're two years old?
Love,
Kristina
We're about to do an art project to make the day go by. Glitter and glue - what could be more fun for a sit still project when you're two years old?
Love,
Kristina
The weekend
Good morning, everyone.
I just realized that I haven't posted in two days, but all is well here. We have simply been too busy to get online too much!
The weekend was a combination of visitors (Mom & Dad S. came to visit), manicure-pedicures (thanks, Ryan!), visit to the Farmer's Market, a trip to Lincoln Park, a visit with Marisa & Max, a family meal with the Dahl clan, and lots more. Ryan even squeezed in a 33 mile bike ride and a hair cut... I promise I don't ignore him entirely! :-) Yesterday, Michele & Dave came over and Michele & I made an Asian feast for dinner, with the most delicious won ton soup I've had in years alongside some fresh and delightful sushi.
In short? The weekend was filled with normal things that we'd do before cancer. And that actually, seems like the most progress we've made in a long, long time. My energy levels aren't close to what they were, but it feels SO good to just do "normal" things without arranging everything around cancer. This is good timing - we only have 'til Wednesday with Caley and she's actually out sick today, so it's a good thing that I'm getting y act together now.
This weekend I also met Emily, who lives in West Seattle and also has breast cancer. She's going in to surgery today, so she is particularly in my thoughts. I tried to coach her that it will all be okay, as it was for me in my surgery, but the only thing that can truly make a person believe that is experiencing it themselves, and I feel for Emily as she faces her surgery.
In health news, Saturday night was my roughest night since chemo. I felt more nauseaus, and my blood felt just absolutely poisoned (ugh). This, I believe, is the cumulative effect I've heard about. I went to bed early despite having guests, and I took my meds, and these things seem to have helped...thank goodness. The worst effect is that I now dread my 4th AC treatment, but I will survive, and, after all, there is only one more before I switch to my weekly Taxol.
This weekend we got the frightening phone call that our dear friend Paul, while on a ride with Libby & Kent, crashed on his bike and actually had to be taken via ambulance to the hospital. He has a broken scapula (shoulderblade) and is in for some painful, uncomfortable recovery, but we are so grateful that he is not further hurt. Paul, we're thinking of you! You are, as always (but more than ever) in our thoughts and prayers.
With love to all,
Kristina
I just realized that I haven't posted in two days, but all is well here. We have simply been too busy to get online too much!
The weekend was a combination of visitors (Mom & Dad S. came to visit), manicure-pedicures (thanks, Ryan!), visit to the Farmer's Market, a trip to Lincoln Park, a visit with Marisa & Max, a family meal with the Dahl clan, and lots more. Ryan even squeezed in a 33 mile bike ride and a hair cut... I promise I don't ignore him entirely! :-) Yesterday, Michele & Dave came over and Michele & I made an Asian feast for dinner, with the most delicious won ton soup I've had in years alongside some fresh and delightful sushi.
In short? The weekend was filled with normal things that we'd do before cancer. And that actually, seems like the most progress we've made in a long, long time. My energy levels aren't close to what they were, but it feels SO good to just do "normal" things without arranging everything around cancer. This is good timing - we only have 'til Wednesday with Caley and she's actually out sick today, so it's a good thing that I'm getting y act together now.
This weekend I also met Emily, who lives in West Seattle and also has breast cancer. She's going in to surgery today, so she is particularly in my thoughts. I tried to coach her that it will all be okay, as it was for me in my surgery, but the only thing that can truly make a person believe that is experiencing it themselves, and I feel for Emily as she faces her surgery.
In health news, Saturday night was my roughest night since chemo. I felt more nauseaus, and my blood felt just absolutely poisoned (ugh). This, I believe, is the cumulative effect I've heard about. I went to bed early despite having guests, and I took my meds, and these things seem to have helped...thank goodness. The worst effect is that I now dread my 4th AC treatment, but I will survive, and, after all, there is only one more before I switch to my weekly Taxol.
This weekend we got the frightening phone call that our dear friend Paul, while on a ride with Libby & Kent, crashed on his bike and actually had to be taken via ambulance to the hospital. He has a broken scapula (shoulderblade) and is in for some painful, uncomfortable recovery, but we are so grateful that he is not further hurt. Paul, we're thinking of you! You are, as always (but more than ever) in our thoughts and prayers.
With love to all,
Kristina
Friday, August 26, 2005
Update email on the LAF Ride - PLEASE donate!
Here is an email that we are trying to send out today (it's not going through right now because I have a bad email address for somebody in my list - I'm working on that!). Since I'm not sure who reads the blog vs who sends email, I'm putting the entry in here, too.
Please, please, please consider donating. We are truly grateful - thank you! To donate, click on the link in the white box to your right on the screen.
-----------------------------------------------------------------------------
Hello, friends and family. By now most of you have heard that I was diagnosed with breast cancer on June 1, 2005, and that I am in the fight of my life. This is a fight that I fully intend to win - I have great doctors, all kinds of medical advances working in my favor, and pure stubbornness on my side, and this is not a fight I can afford to lose! I have many blessings and supports in my life, and I do not forget them as I do battle every day.
As you might imagine, fundraising for cancer research and support is something that Ryan and I believe in passionately. I am not the first in our family to have cancer - both of my grandfathers had cancer, my Aunt Ann had breast cancer, our nephew Josiah had a rare form of lymphoma, and my sister-in-law Kerri is also fighting breast cancer. Too many people, altogether! Ryan and I want to help to fight for cancer cures and assistance for cancer research, and that is where we are asking for your help.
This September, Ryan is riding in the Portland Livestrong Ride, sponsored by Lance Armstrong's Livestrong Foundation. Ryan will ride alongside Lance, the STP 2004 Team (Paul, Libby, and Kent), and my Uncle Mike (all of whom are doing their own fundraising for the event). If Ryan hits certain fundraising levels, he will win the possibility of an early starting place in the race, close to Lance...but that is not our main goal. Our main goal is to raise money to cure this terrible disease.
Please consider a donation, large or small. No amount is too trivial (every dollar helps!) and certainly, no amount is too large (but only fitting into your personal budget, of course). You can donate by clicking the link online - the registered rider is Ryan. Tessa and I plan to go (as long as I'm doing well in chemotherapy...so far so good) to cheer Ryan and our friends across the finish line.
TO DONATE, click on the link in the white box to the right on your screen.
We do not wish to inundate your inbox with messages, so this is the last message that we will send. We understand that finances can be tight, and that there are many worthy causes to choose between, but we hope that you will consider even a small donation. Together, we are strong! And please, do not hesitate to forward this email to anyone you think may be interested.
Thank you in advance for considering making a donation. We chose the Lance Armstrong Livestrong foundation because we believe that they spend their money well, and because Lance is a huge source of personal inspiration to both Ryan and myself. We support the good work that they are doing, and we hope that you will too.
Thank you so much for your continued love and support. We would be lost without you.
Love,
Kristina, Ryan, and Tessa Surface
PS I tried to check against the list of people who have already donated and I am SO sorry if I inadvertantly sent this to you again. We are thoroughly grateful for you donation - thank you!
Please, please, please consider donating. We are truly grateful - thank you! To donate, click on the link in the white box to your right on the screen.
-----------------------------------------------------------------------------
Hello, friends and family. By now most of you have heard that I was diagnosed with breast cancer on June 1, 2005, and that I am in the fight of my life. This is a fight that I fully intend to win - I have great doctors, all kinds of medical advances working in my favor, and pure stubbornness on my side, and this is not a fight I can afford to lose! I have many blessings and supports in my life, and I do not forget them as I do battle every day.
As you might imagine, fundraising for cancer research and support is something that Ryan and I believe in passionately. I am not the first in our family to have cancer - both of my grandfathers had cancer, my Aunt Ann had breast cancer, our nephew Josiah had a rare form of lymphoma, and my sister-in-law Kerri is also fighting breast cancer. Too many people, altogether! Ryan and I want to help to fight for cancer cures and assistance for cancer research, and that is where we are asking for your help.
This September, Ryan is riding in the Portland Livestrong Ride, sponsored by Lance Armstrong's Livestrong Foundation. Ryan will ride alongside Lance, the STP 2004 Team (Paul, Libby, and Kent), and my Uncle Mike (all of whom are doing their own fundraising for the event). If Ryan hits certain fundraising levels, he will win the possibility of an early starting place in the race, close to Lance...but that is not our main goal. Our main goal is to raise money to cure this terrible disease.
Please consider a donation, large or small. No amount is too trivial (every dollar helps!) and certainly, no amount is too large (but only fitting into your personal budget, of course). You can donate by clicking the link online - the registered rider is Ryan. Tessa and I plan to go (as long as I'm doing well in chemotherapy...so far so good) to cheer Ryan and our friends across the finish line.
TO DONATE, click on the link in the white box to the right on your screen.
We do not wish to inundate your inbox with messages, so this is the last message that we will send. We understand that finances can be tight, and that there are many worthy causes to choose between, but we hope that you will consider even a small donation. Together, we are strong! And please, do not hesitate to forward this email to anyone you think may be interested.
Thank you in advance for considering making a donation. We chose the Lance Armstrong Livestrong foundation because we believe that they spend their money well, and because Lance is a huge source of personal inspiration to both Ryan and myself. We support the good work that they are doing, and we hope that you will too.
Thank you so much for your continued love and support. We would be lost without you.
Love,
Kristina, Ryan, and Tessa Surface
PS I tried to check against the list of people who have already donated and I am SO sorry if I inadvertantly sent this to you again. We are thoroughly grateful for you donation - thank you!
Thursday, August 25, 2005
Baby Joshua is here!
Hello, friends and family! Here is a picture of my youngest nephew, Joshua Peter, who was born today at 7:16am (I think I have the time correct) - isn't he just so cute?
And of course I can't resist adding a picture of myself holding the little guy (note the new wig - have I posted that here yet?).
And here's a picture of the proud grandparents with all three grandchildren - their cup runneth over with love and joy.
And finally, here's a picture of the beautiful new family. Caleb was not in a picture taking mood - understandable, with all that he has going on - but I had to include it anyway. :-)
Usually my day after chemo is a "make no plans what-so-ever" day, but the birth of a newphew is too good to miss. I'm so glad that I got to meet him on his actual birthday.
My only other update is that today I had my Neulasta shot, and have had no ill-effects from it so far. I'm tired, only slightly nauseaus (fully controllable, but I have to keep an eye on it), and in pretty good spirits.
Love to all,
Kristina
Joshua's Birth Day
Today little Joshua is being born.....hopefully right this very minute, as a fact, for Krystal was scheduled for a c-section at 7am. Krystal, Mike, Caleb, and Joshua, you are all in my prayers. I can't wait to embrace your family!
We will head to my mom's house (she lives close to the hospital) to await the call, and then we'll visit the new family. I can't wait!
My ECH (Evil Cytoxan Headache) is gone this morning and I couldn't be more grateful. It was horrible and debilitating, my worst chemo symptom yet. Thankfully it was short lived, and Motrin and sleep took care of it. I'm ready for the day!
With love,
Kristina
We will head to my mom's house (she lives close to the hospital) to await the call, and then we'll visit the new family. I can't wait!
My ECH (Evil Cytoxan Headache) is gone this morning and I couldn't be more grateful. It was horrible and debilitating, my worst chemo symptom yet. Thankfully it was short lived, and Motrin and sleep took care of it. I'm ready for the day!
With love,
Kristina
Wednesday, August 24, 2005
Off to bed for me
Well, friends, the Evil Cytoxan Headache has returned, and I'm treating it by taking Motrin and going to bed early. Hopefully this will cure it and tomorrow I will be ready to take on the day.
Tomorrow is a special day, because my nephew Joshua Peter will be arriving into the world! Mike & Krystal are scheduled to be at the hospital very early, and my hope is that I will get to meet Joshua and share my love and well wishes with Mike, Krystal, and Caleb (the big brother and also my beloved nephew) around 10am. Hurrah! Much to celebrate.
Love,
Kristina
Tomorrow is a special day, because my nephew Joshua Peter will be arriving into the world! Mike & Krystal are scheduled to be at the hospital very early, and my hope is that I will get to meet Joshua and share my love and well wishes with Mike, Krystal, and Caleb (the big brother and also my beloved nephew) around 10am. Hurrah! Much to celebrate.
Love,
Kristina
3 down, 13 to go!
Today I completed my third chemotherapy infusion. It went as well as the first two (aside from having to start late because they were running behind) and had the additional bonus of my mom being there so that we could chit-chat and catch up in an uninterrupted way.
My numbers, according to my doc, are fantastic. I asked about the CA 27.29 and mine is an 11 (down from 44.4 - normal is 0-38). Hurrah! This marker can be very unreliable but they look for trends and the downward trend is definitely confidence inspiring. My blood counts also look excellent (to keep this up, I will go in for a Neulasta shot tomorrow).
More later, when I have more time. Love to all!
Kristina
My numbers, according to my doc, are fantastic. I asked about the CA 27.29 and mine is an 11 (down from 44.4 - normal is 0-38). Hurrah! This marker can be very unreliable but they look for trends and the downward trend is definitely confidence inspiring. My blood counts also look excellent (to keep this up, I will go in for a Neulasta shot tomorrow).
More later, when I have more time. Love to all!
Kristina
Today is the third chemo
I didn't sleep well at all last night, and I think that my body was reminding me that I am NOT looking forward to chemo today (who would)? In general, it's gone so well, but it's still not something that I do with joy in my heart.
Today my mom is coming with me, and it will be nice to sit and chit-chat. Thanks, Mom!
Love,
Kristina
Today my mom is coming with me, and it will be nice to sit and chit-chat. Thanks, Mom!
Love,
Kristina
Monday, August 22, 2005
Another busy day
Today was another busy day (shopping for Tessa's fall clothes with Caley and my mom, a play date with Beth and Anna), and then this evening as soon as Ryan got home I left for the YSC meeting. It was very interesting to hear the other perspectives at the meeting - a lot of the discussion was centered on reconstructive surgery, pros and cons of different types of reconstruction, and WHEN people would choose to have reconstruction. No two survivors appear to have the same theory on this subject, and I find that interesting.
Here's my take on it: I want reconstruction as soon as it's healthy to do so. I lean towards the DIEP surgery (taking abdominal tissue and turning it into breast tissue), but it is a MAJOR surgery with a long recovery and a ton of scars afterwards, and that scares me. The jury is still out on what I'll do, this is just my leaning. (Plus, it comes with a free tummy tuck by default....)
So much to say, so little time....I'm off to bed. More tomorrow!
Kristina
Here's my take on it: I want reconstruction as soon as it's healthy to do so. I lean towards the DIEP surgery (taking abdominal tissue and turning it into breast tissue), but it is a MAJOR surgery with a long recovery and a ton of scars afterwards, and that scares me. The jury is still out on what I'll do, this is just my leaning. (Plus, it comes with a free tummy tuck by default....)
So much to say, so little time....I'm off to bed. More tomorrow!
Kristina
Sunday, August 21, 2005
Sunday part two
Well, the headache didn't go away and so we went out to eat. 7:24pm and I'm considering bed...sigh. Oh well the food will keep, and Ryan's here to care for Tessa, so it could be worse.
Good night!
Kristina
Good night!
Kristina
Sunday
At this moment, Tessa is not napping in her room...I believe that today is a quiet time day. Ah well...
We've had a busy morning. Ryan got up before me at the crack of dawn to get on his bike (and get on the roads before they got busy), and I woke up before Tessa at 6:30am. I read in bed until 7am when she woke up, and then we had a light bite to eat and got dressed, leaving the house by 8am. I loaded Tessa into the baby jogger, and took a brisk walk with her to the grocery store to pick up a few things (I've decided that it's high time I started cooking again - I can not rely on the generousity of friends forever), about a two mile round trip. When we got back, Ryan was home, and I made us french toast, sausages, and sides of fruit (with a mocha for Ryan, but not for me, because I am "off" coffee these days). It was great - classical music, good food, and I felt like, even at the early hour, I'd accomplished something.
After breakfast and showers, we loaded into the car "for an adventure." We first went to SuperGo, to drop Ryan off to look at some bike stuff and to get his bike wheel fixed (he broke a spoke). While he did that, Tessa and I went next-door to Half Price Books, and found her a couple of cute books (and spent time reading many more) to take home. Then we all met up again, and went to the UW campus just for the sake of walking around and enjoying the campus. It was Tessa's first time there, and I have no idea what she thought of the beautiful architecture and landscaping, but I am certain that she liked the squirrels and the fact that, with no students there now, we could let her run wild around campus - lots of grass and footpaths, nothing to hurt her, so we let her lead the way. We walked through the quad and I pointed out various buildings and talked about the classes I'd taken there to Ryan, and we walked down my memory lane. (I should add, for those who know the campus, that we walked about 1/20th of it with Tessa...this was just a taste!)
After the UW, we went to U Village because there is a Barnes and Noble there, and Ryan and I each had gift certificates. (By mid-autumn there will be a Barnes and Noble just a couple of miles from us - it's under construction - but until then we must drive. I'd prefer a great independent bookstore but I have to admit that I do like Barnes and Noble, even if they are the downfall of civilization as we know it...!) We took turns - Tessa played on the play structure outside with Ryan while I shopped, and then Ryan shopped while Tessa and I read stories in the children's section.
It was a great morning, but up popped and evil headache, and on the car ride home I was silent...ugh. A big glass of water and two Motrin later it's much better, thank goodness.
Tonight we have no plans, which is lovely. I do, however, plan to cook dinner...something I'm trying to do much more often now. Susie made a fabulous pototo salad (roasted baby potatoes, sour cream, basil, and roasted garlic...soooo delicious!) at a recent BBQ, so I got her recipe, and I'm considering it the centerpiece of the meal. I am also making insalata caprese (we eat it all summer - I just love it), wild sockeye salmon (grilled), and broccoli, but the meal is planned around the potato salad. Yummm yummm.
I hope that your Sundays are going as well...minus the headache, of course!
Kristina
We've had a busy morning. Ryan got up before me at the crack of dawn to get on his bike (and get on the roads before they got busy), and I woke up before Tessa at 6:30am. I read in bed until 7am when she woke up, and then we had a light bite to eat and got dressed, leaving the house by 8am. I loaded Tessa into the baby jogger, and took a brisk walk with her to the grocery store to pick up a few things (I've decided that it's high time I started cooking again - I can not rely on the generousity of friends forever), about a two mile round trip. When we got back, Ryan was home, and I made us french toast, sausages, and sides of fruit (with a mocha for Ryan, but not for me, because I am "off" coffee these days). It was great - classical music, good food, and I felt like, even at the early hour, I'd accomplished something.
After breakfast and showers, we loaded into the car "for an adventure." We first went to SuperGo, to drop Ryan off to look at some bike stuff and to get his bike wheel fixed (he broke a spoke). While he did that, Tessa and I went next-door to Half Price Books, and found her a couple of cute books (and spent time reading many more) to take home. Then we all met up again, and went to the UW campus just for the sake of walking around and enjoying the campus. It was Tessa's first time there, and I have no idea what she thought of the beautiful architecture and landscaping, but I am certain that she liked the squirrels and the fact that, with no students there now, we could let her run wild around campus - lots of grass and footpaths, nothing to hurt her, so we let her lead the way. We walked through the quad and I pointed out various buildings and talked about the classes I'd taken there to Ryan, and we walked down my memory lane. (I should add, for those who know the campus, that we walked about 1/20th of it with Tessa...this was just a taste!)
After the UW, we went to U Village because there is a Barnes and Noble there, and Ryan and I each had gift certificates. (By mid-autumn there will be a Barnes and Noble just a couple of miles from us - it's under construction - but until then we must drive. I'd prefer a great independent bookstore but I have to admit that I do like Barnes and Noble, even if they are the downfall of civilization as we know it...!) We took turns - Tessa played on the play structure outside with Ryan while I shopped, and then Ryan shopped while Tessa and I read stories in the children's section.
It was a great morning, but up popped and evil headache, and on the car ride home I was silent...ugh. A big glass of water and two Motrin later it's much better, thank goodness.
Tonight we have no plans, which is lovely. I do, however, plan to cook dinner...something I'm trying to do much more often now. Susie made a fabulous pototo salad (roasted baby potatoes, sour cream, basil, and roasted garlic...soooo delicious!) at a recent BBQ, so I got her recipe, and I'm considering it the centerpiece of the meal. I am also making insalata caprese (we eat it all summer - I just love it), wild sockeye salmon (grilled), and broccoli, but the meal is planned around the potato salad. Yummm yummm.
I hope that your Sundays are going as well...minus the headache, of course!
Kristina
Saturday, August 20, 2005
Wonderful things
There was a spinoff thread of the "what not to say to a cancer patient" thread in the YSC group, about what wonderful things people have said to help make cancer easier. I thought you guys should see my responses:
-----------------------
Favorite things they have said and done:
"I'm here if you need me, day or night."
"Let me organize people for you so that you don't need to tell everyone what you need - just tell me and I'll take care of it."
"Can I treat you to a pedicure? What time can I pick you up?"
"Why don't I take Tessa [my daughter] for a couple of hours to play at my house so that you can take a break?"
"What would you like for dinner?"
"We - your yard work crew - will be there on Saturday. Anything special, besides edging, weeding, and mowing the lawn that you would like done?"
"I got a gift certificate for a spa for my Mother's Day present. I'd like to share it with you and I won't take no for an answer. What day are you available?"
"I pray for you every day."
"I dedicate my yoga practice to you each day."
"I never did breast self exams before, but now I do them monthly. Thank you for reminding me to take care of myself."
"You inspire me."
"Not a day goes by that I don't think of you."
"What can I do for you?"
"I love being your friend."
"I did/am doing a breast cancer (or general cancer) fundraiser in your name. Let's kick cancer's butt!"
"I donated to Ryan's Lance Armstrong fundraiser."
"I love you."
The gifts, cards, and meals are wonderful - and truly keep us going on both a practical and a spiritual level - and just knowing that my friends and family are truly there for me keeps me going in ways I never could have anticipated. I feel very, very fortunate to have these blessings in my life.
Kristina
-----------------------
Favorite things they have said and done:
"I'm here if you need me, day or night."
"Let me organize people for you so that you don't need to tell everyone what you need - just tell me and I'll take care of it."
"Can I treat you to a pedicure? What time can I pick you up?"
"Why don't I take Tessa [my daughter] for a couple of hours to play at my house so that you can take a break?"
"What would you like for dinner?"
"We - your yard work crew - will be there on Saturday. Anything special, besides edging, weeding, and mowing the lawn that you would like done?"
"I got a gift certificate for a spa for my Mother's Day present. I'd like to share it with you and I won't take no for an answer. What day are you available?"
"I pray for you every day."
"I dedicate my yoga practice to you each day."
"I never did breast self exams before, but now I do them monthly. Thank you for reminding me to take care of myself."
"You inspire me."
"Not a day goes by that I don't think of you."
"What can I do for you?"
"I love being your friend."
"I did/am doing a breast cancer (or general cancer) fundraiser in your name. Let's kick cancer's butt!"
"I donated to Ryan's Lance Armstrong fundraiser."
"I love you."
The gifts, cards, and meals are wonderful - and truly keep us going on both a practical and a spiritual level - and just knowing that my friends and family are truly there for me keeps me going in ways I never could have anticipated. I feel very, very fortunate to have these blessings in my life.
Kristina
A few moments to sit still
This morning, after restless night-time sleep, all three of us slept in, rising at the oh-so-late hour of 8am. It's funny how a child can change one's perception of "sleeping in" - there were days before she came in that nothing prior to 10am would have been perceived as a late morning!
Anyway, when we got ourselves together, we decided to go on a train ride together ("One with a whistle, Mommy!") at the Snoqualmie Railroad. The ride is only 75 minutes and perfect for little children, and we even found a coupon in the Entertainment Book. We packed a picnic, left early, and enjoyed our picnic at a cute little city park next to the train depot, under the shade of a lovely gazebo and surrounded by flowers. Then we took the scenic, slow train ride, enjoyed ourselves, and returned home. Tessa fell asleep in the car and didn't mind being transferred to her bed, and Ryan is using the opportunity to rest as well. I should be resting, but I'm enjoying the stolen moments of quiet in the house.
I think that my greatest regret about my life in general is (besides breast cancer, of course!) that there are simply not enough hours in the day to do all the things I'd like to do. It's my own fault that my life is this way - today, for example, we could have spent a quiet day at home, but I won't hear of it when there is an adventure to be had. I'm constantly organizing some small social event, visiting a friend, answering or making a phone call, or coming up with some idea about what Ryan, Tessa and I could do for fun, and this is how I like things - it makes me feel alive to live in this way. However, the down side is that there is little room for quiet contemplation, and, believe it or not, I do like that, too. It wasn't SO long ago that I could lose myself in the Sunday New York Times, or read a novel from cover to cover without falling asleep (I still read as much as I can but I do tend to conk out midway these days), or take time to write in a journal. I do, of course, update here daily, but as you can see these are usually not thoughtful or thought-provoking posts, but more lists of things that are going on in my life. I miss having the time to reflect more often, or to record the analysis in addition to the facts (or, for you English teachers out there....what I write here is too much concrete detail and not enough commentary!). This is a statement of fact, not really a complaint, however. I choose to live my life in the way I choose to live it. Life with a two year old...and breast cancer...allows less time for analysis by nature, and I accept that. I do look forward to the days when I can spend time in true, deep thought again, though, and the few moments that I can do so these days are precious.
In these moments of reflection, I keep asking myself where I am in the process of dealing with my cancer. As with death, in serious illness there is a cycle of grief that starts with denial and ends with acceptance (I can't remember all the in between steps, but anger is certainly one of them). I don't feel much anger - I am not an angry person in general, and I don't find anger a useful emotion most of the time. But do I accept cancer? I struggle with the word acceptance, and that tells me that I have not, indeed, accepted my illness entirely. I would accept an award given to me for something well done - to me, that implies that I agree with the decision to grant the award and I embrace it being given to me. I do not feel this way about cancer in the slightest - I'm willing to dump it off at the earliest possible opportunity. But, in many ways, I'm accepting what is happening. I don't cry and rage because right now, I don't feel a need to. I'm too busy living, fighting, and (honestly) seeing progress against my disease to spend much time focusing on the frustrations of the disease. I worry that in six months, when this is old, old news but I'm still facing further treatment, further surgery, and further pain, that my anger will hit me then, but we will see.
My treatment plan is a long one:
May 25, 2005: Found a breast lump
May 26, 2005: General practitioner concurred that yes, there was a lump, and referred me to a mammogram
May 27, 2005: Two mammograms and an ultrasound are highly suspicious
May 31, 2005: Biopsies (3)
June 1, 2005: Diagnosis: Infiltrating Ductal Carcinoma
June 13, 2005: Mastectomy (11 days til drains removed)
July 14, 2005: Portacath placement (surgery)
July 18, 2005: Ancillary Node Dissection (8 days til drains removed)
July 27, 2005: First chemo, Adriamycin/Cytoxan (biweekly, 4 cycles)
August 6, 2005: Head shaving (hair started falling out day before)
September 21, 2005: First chemo, Taxol (weekly, 12 weeks), plus Herceptin (weekly, 52 weeks)
December 7, 2005: expected last date for chemo (20 weeks total)
Radiation: unknown at this time, but 6 weeks if we do it, January 2006
February 2006: removal of ovaries or hysterectomy and ovaries
September 21, 2006: Last Herceptin treatment (weekly IV)
Late Fall 2006: reconstructive surgery; often requires multiple surgeries; will remove right breast and reconstruct it at the same time
2009: Expected date for my hair to be as long as it was before chemotherapy
Early 2006 to early 2011: Hormone therapy, an aramatase inhibitor like Femara (oral)
There is a lot to think about in this list, and the most obvious thing is that I am barely on the on-ramp in terms of the freeway that is my treatment. I think I'm relatively accepting about where I'm at, and that feels good most days, but the truth is that I have a long, long road ahead of me. I will go through menopause at the age of 36, and I will still be on some "major" drugs when Tessa is in the second grade.
Breast cancer, in this way, changes everything. I can not believe how blythely, how assuredly, how confidently I was charging ahead in the day to day of my existance when this hit me from sideways. I really never thought a minute about getting sick, beyond that I wished avoid colds because they keep Tessa and I in quarantine from other kids and moms, and that the stomach flu was "the worst" because I'm phobic about throwing up. It really never occurred to me in any real ways that I could get sick in the truest sense of the world, and it certainly never occurred to me that it would impact my family as deeply as it has. If I could go back, I would not change this one bit. I would change my level of appreciation for my life, but I would keep my naivete. Being naive isn't exactly the same as being ignorant (I knew on an intellectual level that things could change - that is why I did breast self exams to begin with - so I wasn't ignorant of anything but the future) but naivete, I am here to report, is bliss.
I miss the simplicity of the "before" - and there will always be a "before" and "after" when it comes to my diagnosis. I think that if I live to be 100, I will never forget how I felt before June 1, 2005, and how I felt afterwards. I will never be able to go back, because now I truly understand both the wonder and joy in my beautiful life (for it is beautiful, to me) but also some of the depths of the sorrow. I understand now that life is a spider-web, beautiful, intricate, stronger that it looks - but infinitely fragile, as well. I understand this on a gut level now, and not just an intellectual one. I do not wish this understanding on anyone.
Another thing that I miss about the "before" is that I was the person helping others. I have always enjoyed making a friend a meal, or sending a cheerful card, or giving a phone call, or having the play date at my house, or inviting friends to dinner or a BBQ. These days, I am the recipient of so much incredible kindness, and I am not often able to reciprocate. I miss the feeling of helpfulness of the "before." Like Tessa, I very much want to say, "NO! I want to do it BY MYSELF!" Of course, I am intensely grateful for the help we've received - indeed, I think that we would have collapsed a thousand times without it - but I'm sad that I am not the person to help others right now. It doesn't help me at this time to know that one day, again, I will be helping others, because right now, and for the foreseeable future, my ability to lend a hand is severely limited, and that is just the way it is, and it's hard.
What other random musings have I wanted to share, and not been able to?
Here's one. The other day, I ran into our old neighbors two days in a row. On the first day, I was wearing my wig. On the second day, only my bandana. Our old friend, a lovely woman, came to me, hugged me, and said, "Kristina, what are you going through?" Bluntness is the only way I knew how to answer, so I told the truth in three words, "Chemotherapy. Breast cancer." She hugged me tighter, told me that she'd pray for me, and told me about a family member that was dying from his own ailments right then...she said it had been a rough year for their family. In the middle of a resturant, I was humbled, because sometimes (and this is embarrassing to say), in the middle of the catastrophe that has been our last few months, I forget that I am not the only one who has had suffering, and that the world has gone on, with not only the joy I usually see, but also with great suffering. I had forgotten how lucky I am - there is no guarantee that I will die from breast cancer, thank God - and that there are even bigger problems in the world. I am humbled by this reminder, and I hope that it can make me stronger as I face the adversity in my life. My adversity is minor compared to losing a family member (I'm making the big assumption that I won't be the family member in question!), compared to the tsunami last winter, compared to the poverty in the world....compared to so many things. How on earth could I have lost perspective on something so fundamental? Well, I must say, I'm glad to be brought back to earth on that subject, and it somehow eases my burden to be reminded that, though it's pretty large, it's certainly not the biggest on out there, not by a long shot.
And on another topic:
I'm afraid of dying. Who isn't? I'm not as much afraid of actually being dead (I think that things are pretty resolved for me at that point...!) as of the process of dying. If I believe I am dying, my heart will ache from the pain of losing, and leaving, Ryan and Tessa more than I could possibly stand, and I can not bear to think of the pain they would feel. I can not read stories about the dead or dying. I can not read an obituary. I can not look at the website of a beautiful young woman who is the friend of friends who died of breast cancer shortly after my diagnosis (leaving behind a beautiful son and husband) because I can not bear it. If you want to know what stage I'm in for this one, it's definitely denial. Because I simply refuse to think about the option of dying. It's not an option to me. It's awful. I can't think about it.
And on a lighter subject:
Wigs. There seem to be certain camps in the cancer community on the subject of hair. In one camp, there are those who cling to their wigs, trying to sleep in them (they actually sell a wig you can sleep in, in the TLC catalog for cancer patients) and never considering leaving the house with them. In another camp, there are those who believe that the wig belies who they are, and that wearing a wig somehow betrays who they have become as a person. Well, I'm not in either camp, it turns out. I have done the public pool thing bald, I'm often seen in a bandana or sun hat, and I will wear my hats this winter. But I have fallen in love with my new wig! When I wear it, nobody does a double take. I do not need to catch people's eyes to reassure them that I am, indeed, alive and vibrant. I do not need to explain anything to inquisitive children. I do not stand out in a crowd when I wear my wig. Plus, my wig is SO much prettier than my real hair! My new, long wig (I need to post a photo) has now been trimmed and styled by Krista, and I LOVE it. When I catch my reflection in a window when I'm wearing my wig, I think "Wow she has pretty hair!" before I realize that it's ME in the glass. I don't think that this is in any way a denial of who I am or what I'm going through - I certainly know I am living every minute of my life as a cancer survivor, but let me tell you, I just feel GOOD in my wig. Sometimes I don't feel like wearing the wig - it's not always comfortable, and as I sit here typing, I'm bald bald bald with nothing on my head - but I'm so glad that I have it and I think that the public "me" will wear it most of the time.
And speaking of my bald head - yesterday it became more bald. I'd been planning on having Ryan shave off a bunch of the stubble, but yesterday took care of that for me. In the evening, I felt the prickly sensation again, and most of the stubble came out. There is still some stubble remaining (I suspect it will never go away entirely) but most of my head is shiny now, with a lot of smoothness.
And here's another random thought:
I never did post here about my tea party! Well, a couple of weekends ago, we spent most of the weekend with my parents. We needed to run an errand to pick up Gavin's birthday presents, and since we were on the east side we popped in to Factoria. While there, I got hungry (I'm always hungry these days, especially for starch like bread, pasta, rice, and potatoes) and so we found a place to eat...a tea house! Tucked in to Factoria is "The Secret Garden," a place I wouldn't seek out (I'm not a big fan of malls in general, or Factoria Mall specifically) but fit the day perfectly. My dad and Ryan took one look and said, "NO thank you!" and went to pizza elsewhere in the mall, and this left my mom, my grandmother, Tessa, and I to have a ladies' tea party. We weren't dressed for the occassion, but it was so incredibly special to share this moment between four generations in our family. Tessa had the "teddy bear tea" which came with pink lemonade (for once I let her have it even though it probably was full of food coloring) in a little teapot, and a tiered tray with tiny sandwiches, fruit, and cookies, with a scone on the side. Tessa had her scone in the truly English fashion, with lemon curd and Devonshire cream. We all drank out of frilly pink china tea-cups, with pink napkins, tiny silver teaspoons, and all of the other silliness that comes with a tea party. Tessa learned how to place her cup in the saucer (though she clearly thought that saucers were a waste of time, she practiced well at being a lady), and the four of us chatted and enjoyed each other's company, as well as the food. It was delightful - and it's a moment that I've dreamed about. To have a tea party, a real one, with my beautiful daughter, beloved mother, and darling grandmother, is a treat that I will never forget. Perhaps it was even more special because of its spontenaity. It is a memory I will treasure for all my life. Here is a picture to show you the event:
And on that happy note, I think I would like to catch some rest myself. I will not proofread or edit, as I never do here, and I will trust that you all know that I could go back and craft my message if I had more time, but instead I will leave it at this and consider these ramblings simply my field notes - something to return to so that I can make sense and art out of it later.
With love,
Kristina
Anyway, when we got ourselves together, we decided to go on a train ride together ("One with a whistle, Mommy!") at the Snoqualmie Railroad. The ride is only 75 minutes and perfect for little children, and we even found a coupon in the Entertainment Book. We packed a picnic, left early, and enjoyed our picnic at a cute little city park next to the train depot, under the shade of a lovely gazebo and surrounded by flowers. Then we took the scenic, slow train ride, enjoyed ourselves, and returned home. Tessa fell asleep in the car and didn't mind being transferred to her bed, and Ryan is using the opportunity to rest as well. I should be resting, but I'm enjoying the stolen moments of quiet in the house.
I think that my greatest regret about my life in general is (besides breast cancer, of course!) that there are simply not enough hours in the day to do all the things I'd like to do. It's my own fault that my life is this way - today, for example, we could have spent a quiet day at home, but I won't hear of it when there is an adventure to be had. I'm constantly organizing some small social event, visiting a friend, answering or making a phone call, or coming up with some idea about what Ryan, Tessa and I could do for fun, and this is how I like things - it makes me feel alive to live in this way. However, the down side is that there is little room for quiet contemplation, and, believe it or not, I do like that, too. It wasn't SO long ago that I could lose myself in the Sunday New York Times, or read a novel from cover to cover without falling asleep (I still read as much as I can but I do tend to conk out midway these days), or take time to write in a journal. I do, of course, update here daily, but as you can see these are usually not thoughtful or thought-provoking posts, but more lists of things that are going on in my life. I miss having the time to reflect more often, or to record the analysis in addition to the facts (or, for you English teachers out there....what I write here is too much concrete detail and not enough commentary!). This is a statement of fact, not really a complaint, however. I choose to live my life in the way I choose to live it. Life with a two year old...and breast cancer...allows less time for analysis by nature, and I accept that. I do look forward to the days when I can spend time in true, deep thought again, though, and the few moments that I can do so these days are precious.
In these moments of reflection, I keep asking myself where I am in the process of dealing with my cancer. As with death, in serious illness there is a cycle of grief that starts with denial and ends with acceptance (I can't remember all the in between steps, but anger is certainly one of them). I don't feel much anger - I am not an angry person in general, and I don't find anger a useful emotion most of the time. But do I accept cancer? I struggle with the word acceptance, and that tells me that I have not, indeed, accepted my illness entirely. I would accept an award given to me for something well done - to me, that implies that I agree with the decision to grant the award and I embrace it being given to me. I do not feel this way about cancer in the slightest - I'm willing to dump it off at the earliest possible opportunity. But, in many ways, I'm accepting what is happening. I don't cry and rage because right now, I don't feel a need to. I'm too busy living, fighting, and (honestly) seeing progress against my disease to spend much time focusing on the frustrations of the disease. I worry that in six months, when this is old, old news but I'm still facing further treatment, further surgery, and further pain, that my anger will hit me then, but we will see.
My treatment plan is a long one:
May 25, 2005: Found a breast lump
May 26, 2005: General practitioner concurred that yes, there was a lump, and referred me to a mammogram
May 27, 2005: Two mammograms and an ultrasound are highly suspicious
May 31, 2005: Biopsies (3)
June 1, 2005: Diagnosis: Infiltrating Ductal Carcinoma
June 13, 2005: Mastectomy (11 days til drains removed)
July 14, 2005: Portacath placement (surgery)
July 18, 2005: Ancillary Node Dissection (8 days til drains removed)
July 27, 2005: First chemo, Adriamycin/Cytoxan (biweekly, 4 cycles)
August 6, 2005: Head shaving (hair started falling out day before)
September 21, 2005: First chemo, Taxol (weekly, 12 weeks), plus Herceptin (weekly, 52 weeks)
December 7, 2005: expected last date for chemo (20 weeks total)
Radiation: unknown at this time, but 6 weeks if we do it, January 2006
February 2006: removal of ovaries or hysterectomy and ovaries
September 21, 2006: Last Herceptin treatment (weekly IV)
Late Fall 2006: reconstructive surgery; often requires multiple surgeries; will remove right breast and reconstruct it at the same time
2009: Expected date for my hair to be as long as it was before chemotherapy
Early 2006 to early 2011: Hormone therapy, an aramatase inhibitor like Femara (oral)
There is a lot to think about in this list, and the most obvious thing is that I am barely on the on-ramp in terms of the freeway that is my treatment. I think I'm relatively accepting about where I'm at, and that feels good most days, but the truth is that I have a long, long road ahead of me. I will go through menopause at the age of 36, and I will still be on some "major" drugs when Tessa is in the second grade.
Breast cancer, in this way, changes everything. I can not believe how blythely, how assuredly, how confidently I was charging ahead in the day to day of my existance when this hit me from sideways. I really never thought a minute about getting sick, beyond that I wished avoid colds because they keep Tessa and I in quarantine from other kids and moms, and that the stomach flu was "the worst" because I'm phobic about throwing up. It really never occurred to me in any real ways that I could get sick in the truest sense of the world, and it certainly never occurred to me that it would impact my family as deeply as it has. If I could go back, I would not change this one bit. I would change my level of appreciation for my life, but I would keep my naivete. Being naive isn't exactly the same as being ignorant (I knew on an intellectual level that things could change - that is why I did breast self exams to begin with - so I wasn't ignorant of anything but the future) but naivete, I am here to report, is bliss.
I miss the simplicity of the "before" - and there will always be a "before" and "after" when it comes to my diagnosis. I think that if I live to be 100, I will never forget how I felt before June 1, 2005, and how I felt afterwards. I will never be able to go back, because now I truly understand both the wonder and joy in my beautiful life (for it is beautiful, to me) but also some of the depths of the sorrow. I understand now that life is a spider-web, beautiful, intricate, stronger that it looks - but infinitely fragile, as well. I understand this on a gut level now, and not just an intellectual one. I do not wish this understanding on anyone.
Another thing that I miss about the "before" is that I was the person helping others. I have always enjoyed making a friend a meal, or sending a cheerful card, or giving a phone call, or having the play date at my house, or inviting friends to dinner or a BBQ. These days, I am the recipient of so much incredible kindness, and I am not often able to reciprocate. I miss the feeling of helpfulness of the "before." Like Tessa, I very much want to say, "NO! I want to do it BY MYSELF!" Of course, I am intensely grateful for the help we've received - indeed, I think that we would have collapsed a thousand times without it - but I'm sad that I am not the person to help others right now. It doesn't help me at this time to know that one day, again, I will be helping others, because right now, and for the foreseeable future, my ability to lend a hand is severely limited, and that is just the way it is, and it's hard.
What other random musings have I wanted to share, and not been able to?
Here's one. The other day, I ran into our old neighbors two days in a row. On the first day, I was wearing my wig. On the second day, only my bandana. Our old friend, a lovely woman, came to me, hugged me, and said, "Kristina, what are you going through?" Bluntness is the only way I knew how to answer, so I told the truth in three words, "Chemotherapy. Breast cancer." She hugged me tighter, told me that she'd pray for me, and told me about a family member that was dying from his own ailments right then...she said it had been a rough year for their family. In the middle of a resturant, I was humbled, because sometimes (and this is embarrassing to say), in the middle of the catastrophe that has been our last few months, I forget that I am not the only one who has had suffering, and that the world has gone on, with not only the joy I usually see, but also with great suffering. I had forgotten how lucky I am - there is no guarantee that I will die from breast cancer, thank God - and that there are even bigger problems in the world. I am humbled by this reminder, and I hope that it can make me stronger as I face the adversity in my life. My adversity is minor compared to losing a family member (I'm making the big assumption that I won't be the family member in question!), compared to the tsunami last winter, compared to the poverty in the world....compared to so many things. How on earth could I have lost perspective on something so fundamental? Well, I must say, I'm glad to be brought back to earth on that subject, and it somehow eases my burden to be reminded that, though it's pretty large, it's certainly not the biggest on out there, not by a long shot.
And on another topic:
I'm afraid of dying. Who isn't? I'm not as much afraid of actually being dead (I think that things are pretty resolved for me at that point...!) as of the process of dying. If I believe I am dying, my heart will ache from the pain of losing, and leaving, Ryan and Tessa more than I could possibly stand, and I can not bear to think of the pain they would feel. I can not read stories about the dead or dying. I can not read an obituary. I can not look at the website of a beautiful young woman who is the friend of friends who died of breast cancer shortly after my diagnosis (leaving behind a beautiful son and husband) because I can not bear it. If you want to know what stage I'm in for this one, it's definitely denial. Because I simply refuse to think about the option of dying. It's not an option to me. It's awful. I can't think about it.
And on a lighter subject:
Wigs. There seem to be certain camps in the cancer community on the subject of hair. In one camp, there are those who cling to their wigs, trying to sleep in them (they actually sell a wig you can sleep in, in the TLC catalog for cancer patients) and never considering leaving the house with them. In another camp, there are those who believe that the wig belies who they are, and that wearing a wig somehow betrays who they have become as a person. Well, I'm not in either camp, it turns out. I have done the public pool thing bald, I'm often seen in a bandana or sun hat, and I will wear my hats this winter. But I have fallen in love with my new wig! When I wear it, nobody does a double take. I do not need to catch people's eyes to reassure them that I am, indeed, alive and vibrant. I do not need to explain anything to inquisitive children. I do not stand out in a crowd when I wear my wig. Plus, my wig is SO much prettier than my real hair! My new, long wig (I need to post a photo) has now been trimmed and styled by Krista, and I LOVE it. When I catch my reflection in a window when I'm wearing my wig, I think "Wow she has pretty hair!" before I realize that it's ME in the glass. I don't think that this is in any way a denial of who I am or what I'm going through - I certainly know I am living every minute of my life as a cancer survivor, but let me tell you, I just feel GOOD in my wig. Sometimes I don't feel like wearing the wig - it's not always comfortable, and as I sit here typing, I'm bald bald bald with nothing on my head - but I'm so glad that I have it and I think that the public "me" will wear it most of the time.
And speaking of my bald head - yesterday it became more bald. I'd been planning on having Ryan shave off a bunch of the stubble, but yesterday took care of that for me. In the evening, I felt the prickly sensation again, and most of the stubble came out. There is still some stubble remaining (I suspect it will never go away entirely) but most of my head is shiny now, with a lot of smoothness.
And here's another random thought:
I never did post here about my tea party! Well, a couple of weekends ago, we spent most of the weekend with my parents. We needed to run an errand to pick up Gavin's birthday presents, and since we were on the east side we popped in to Factoria. While there, I got hungry (I'm always hungry these days, especially for starch like bread, pasta, rice, and potatoes) and so we found a place to eat...a tea house! Tucked in to Factoria is "The Secret Garden," a place I wouldn't seek out (I'm not a big fan of malls in general, or Factoria Mall specifically) but fit the day perfectly. My dad and Ryan took one look and said, "NO thank you!" and went to pizza elsewhere in the mall, and this left my mom, my grandmother, Tessa, and I to have a ladies' tea party. We weren't dressed for the occassion, but it was so incredibly special to share this moment between four generations in our family. Tessa had the "teddy bear tea" which came with pink lemonade (for once I let her have it even though it probably was full of food coloring) in a little teapot, and a tiered tray with tiny sandwiches, fruit, and cookies, with a scone on the side. Tessa had her scone in the truly English fashion, with lemon curd and Devonshire cream. We all drank out of frilly pink china tea-cups, with pink napkins, tiny silver teaspoons, and all of the other silliness that comes with a tea party. Tessa learned how to place her cup in the saucer (though she clearly thought that saucers were a waste of time, she practiced well at being a lady), and the four of us chatted and enjoyed each other's company, as well as the food. It was delightful - and it's a moment that I've dreamed about. To have a tea party, a real one, with my beautiful daughter, beloved mother, and darling grandmother, is a treat that I will never forget. Perhaps it was even more special because of its spontenaity. It is a memory I will treasure for all my life. Here is a picture to show you the event:
And on that happy note, I think I would like to catch some rest myself. I will not proofread or edit, as I never do here, and I will trust that you all know that I could go back and craft my message if I had more time, but instead I will leave it at this and consider these ramblings simply my field notes - something to return to so that I can make sense and art out of it later.
With love,
Kristina
Friday, August 19, 2005
This made me laugh and laugh
Okay, you've got to read this, but remember two things:
1. "Strong" language (keep the kids away!)
2. I'm sure you're not guilty of any of these sayings. ;-)
I recognize that people just don't know what to say, and my personal feeling is that I'd rather have you say SOMETHING than ignore me. (Except "well you could get hit by a bus tomorrow" because that one is just plain irritating on a number of levels.) And I actually LIKE the Lance comments because we're big fans in this house. But the rest, well, you've just got to laugh.
Check it out and see for yourself:
41 Things to Never Say to a Cancer Patient
Thanks, Kristi, for posting that!
Love,
Kristina
1. "Strong" language (keep the kids away!)
2. I'm sure you're not guilty of any of these sayings. ;-)
I recognize that people just don't know what to say, and my personal feeling is that I'd rather have you say SOMETHING than ignore me. (Except "well you could get hit by a bus tomorrow" because that one is just plain irritating on a number of levels.) And I actually LIKE the Lance comments because we're big fans in this house. But the rest, well, you've just got to laugh.
Check it out and see for yourself:
41 Things to Never Say to a Cancer Patient
Thanks, Kristi, for posting that!
Love,
Kristina
DEXA results - good!
When we were at our friends' Keith & Noel's tonight enjoying a lovely dinner (thank you!) and having fun watching the three girls play together, I got a call from the nurse at my OB's office. (The OB, Dr. Hutchison, is the one who ordered the bone density scan for me.) She said that the DEXA results are all normal! I have no idea how to interpret this (although it must be good, right?) because the regular (not density) bone scan showed "degeneration in the hips bilaterally" so what does that mean?
Anyway, I like that my tests are coming back normal these days and I appreciate that. :-)
Good night,
Kristina
Anyway, I like that my tests are coming back normal these days and I appreciate that. :-)
Good night,
Kristina
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