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
Saturday, August 20, 2005
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
CA 27.29 and Great News
CA 27.29 is a cancer marker (CA is "cancer antigen") that shows up in the blood. For those of you with photographic memories, you may recall that the usual healthy range is 38 and below, and mine was 44.4 when I was first tested, at the time of my diagnosis, and before my mastectomy. Well, today, when calling to ask my oncologist a few questions and follow up on my DEXA scan (no results yet), I asked about CA 27.29 and if it had been tested again, and what the results were.
Oncologist's Nurse: "Your CA 27.29 levels are normal, and have been since July."
Me: "What? You mean I'm cancer free????"
Oncologist's Nurse: "You're a survivor!"
This is very exciting, celebratory news. My body is not registering that it has cancer any more, and I hope and pray that any stray cancer cells are being nuked by the chemo, never to recur.
I am aware that breast cancer is considered a chronic disease, and that I will need testing for the rest of my life (MRIs, bone scans, etc.) to make sure that we don't let anything go undetected for too long. Sometimes people go years with no signs, and then go in for a test, only to find metastatic cancer. Those are the thoughts that keep me up at night, of course, but they're the same thoughts that I refuse to dwell on.
Today, I am dwelling on the very real possibility that when I say I'm cancer free, I am telling the truth. Break out the champagne!!
Love,
Kristina
PS Okay, save the champagne because I've lost my taste for alcohol while on chemo....! I'll have a sparkling water in a fancy glass, instead. :-)
Oncologist's Nurse: "Your CA 27.29 levels are normal, and have been since July."
Me: "What? You mean I'm cancer free????"
Oncologist's Nurse: "You're a survivor!"
This is very exciting, celebratory news. My body is not registering that it has cancer any more, and I hope and pray that any stray cancer cells are being nuked by the chemo, never to recur.
I am aware that breast cancer is considered a chronic disease, and that I will need testing for the rest of my life (MRIs, bone scans, etc.) to make sure that we don't let anything go undetected for too long. Sometimes people go years with no signs, and then go in for a test, only to find metastatic cancer. Those are the thoughts that keep me up at night, of course, but they're the same thoughts that I refuse to dwell on.
Today, I am dwelling on the very real possibility that when I say I'm cancer free, I am telling the truth. Break out the champagne!!
Love,
Kristina
PS Okay, save the champagne because I've lost my taste for alcohol while on chemo....! I'll have a sparkling water in a fancy glass, instead. :-)
Thursday, August 18, 2005
A day to myself
Today, Tessa is off to Grammy's house (as she does every Thursday). Tessa will do the things that she does every Thursday: she will go swimming; she will go to the Wiggle Worms "gymnastics" class with Grammy, Uncle Mike, and cousin Caleb; there may be a visit to the pet store to see the small animals and watch the dogs get groomed; there will be a Chinese food lunch at the resturant that they go to every week (with Grandpa, too); there will be running and kisses with Foster-puppy - in short, Tessa will have a wonderful day and she really looks forward to these Thursdays.
Usually, on Thursdays, I book myself up. Lately, I've been using them for doctor's appointments, because then I don't feel mommy-guilt for spending so much time away from Tessa (trust me, Tessa-girl, I would rather play with you than go to the doctor!). But today, it's all about ME and I'm delighted.
This morning I have few plans, and then some time after noon my friend Gretchen is coming over for lunch, girl-talk, and visiting. Mid-afternoon I have an appointment with Krista to get my new wig styled. Now THESE are the appointments that should be done on a mommy's day off (I won't even bother mentioning that I wish it was a "real" hair appointment, not a wig appointment....!).
I will probably get some things done around the house that have been bugging me, but I will do them on my terms. I'll listen only to music I like, do only what I wish....
It's time to dive in. Hurrah!!!!
Love,
Kristina
PS WELCOME TO THE WORLD, PARKER! I got news from Heather that Shannon's son was born last night or this morning, happy and healthy. Hurrahhhhhhh!
Usually, on Thursdays, I book myself up. Lately, I've been using them for doctor's appointments, because then I don't feel mommy-guilt for spending so much time away from Tessa (trust me, Tessa-girl, I would rather play with you than go to the doctor!). But today, it's all about ME and I'm delighted.
This morning I have few plans, and then some time after noon my friend Gretchen is coming over for lunch, girl-talk, and visiting. Mid-afternoon I have an appointment with Krista to get my new wig styled. Now THESE are the appointments that should be done on a mommy's day off (I won't even bother mentioning that I wish it was a "real" hair appointment, not a wig appointment....!).
I will probably get some things done around the house that have been bugging me, but I will do them on my terms. I'll listen only to music I like, do only what I wish....
It's time to dive in. Hurrah!!!!
Love,
Kristina
PS WELCOME TO THE WORLD, PARKER! I got news from Heather that Shannon's son was born last night or this morning, happy and healthy. Hurrahhhhhhh!
Wednesday, August 17, 2005
Breast Cancer Friends
Lately I have had the great fortune of making some lovely new friends. First there was Gretchen, who is a friend of Alice's; then there was Susan, who lives in Boston (we met in a chat room for breast cancer survivors); then there was Nicole (who attends the YSC support meetings, and I went to one); then there was Lia, who I met on a website for survivors and who has adopted me and sends me thoughtful presents on chemo days (thank you Lia!); then there was Prema (who I met online and who happens to have chemo at the same day and place I have mine - talk about a small world); and then there was Hope, who I met in the wig store. New friends from the most unlikely places, and I'm so fortunate to have met them. Gretchen, Susan and I exchange a flurry of emails daily, and these emails ground me and keep me sane. Recently, I was able to meet up with Nicole and Prema at Nicole's house, and we chatted like old friends and had a great time watching our children (five between the three of us) play.
I am so grateful to these new friends for showing me the way, for sharing their light, and for helping me to adjust to my new "normal."
Included here is a picture of Prema, myself, and Nicole on a sunny day this week.
Breast cancer is really a sisterhood - I am reminded of the ties that bind all women, of our fragility, but most of all, of our strength. I had no desire to join this club and, no offense ladies, but I'd drop out in a minute if I could, but the friendships that I am developing make it all bearable. Again, I am reminded of my blessings. I am grateful for my new friends, and though I wish they could all leave the club, I am glad to have friends with whom to share the journey.
Love,
Kristina
I am so grateful to these new friends for showing me the way, for sharing their light, and for helping me to adjust to my new "normal."
Included here is a picture of Prema, myself, and Nicole on a sunny day this week.
Breast cancer is really a sisterhood - I am reminded of the ties that bind all women, of our fragility, but most of all, of our strength. I had no desire to join this club and, no offense ladies, but I'd drop out in a minute if I could, but the friendships that I am developing make it all bearable. Again, I am reminded of my blessings. I am grateful for my new friends, and though I wish they could all leave the club, I am glad to have friends with whom to share the journey.
Love,
Kristina
Tuesday, August 16, 2005
Tuesday's appointments
Today I had three doctor's appointments:
1. With my naturopath. Interestingly, she's the member of the team I feel the least connection to, which is the opposite of how I thought I'd feel. She's nice, and professional, and I don't have any complaints...but I just don't feel a connection. Anyway, this was a follow up visit with her. The hardest advice I have to follow is to get 8-10 hours of sleep daily. I have insomnia, and I'm terrible at napping, and she says "No wonder you're so tired!" She officiall called me a Super-Over-Achiever....is this a compliment? LOL She is pleased with how well I'm doing, though, so that is nice. She's added glucosamine to my vitamin regimin, as it might help with the neuropathy that is sometimes part of chemo (numbness in fingers, toes, etc.).
2. For a thyroid ultrasound. I've taken replacement thyroid hormones (Synthroid) since 1989 for hypothyroidism - a relatively commonplace problem that is completely controlable through a pill a day for the rest of my life. At my OB's physical, she noticed I had a little node that she could feel, so off to the ultrasound I went. In this case, they could read the results immediately, and all is well....my thyroid looks like it should for having been on Synthroid, and nothing else to report. Phew.
3. For a DEXA (bone density scan). As I mentioned before, my regular (not density) bone scan showed "dengeneration bilaterally in the hips" and this is cause for concern for osteoperosis or arthritis. This test will let us know...no results yet.
This morning was a lovely PEPS meeting, and the girls presented me with three great hats. I got tearful....the hats are lovely, but the women are even lovelier. I am blessed.
After the docs, Holly & Daven came over for a little visit and catch up, and it was good to see them. They're part of our regular routine and it's nice to have that routine.
My fatigue is improving - I did finally sleep last night - and I'm optimistic that tomorrow will be even easier. With Caley here, I had lots of help today, and that helped too.
Love to all - my handsome husband is home and it's time to eat the yummy dinner that Beth O. brought by yesterday (when we actually went out because our house was SO hot!). Thank you, Beth!
Love to all,
Kristina
1. With my naturopath. Interestingly, she's the member of the team I feel the least connection to, which is the opposite of how I thought I'd feel. She's nice, and professional, and I don't have any complaints...but I just don't feel a connection. Anyway, this was a follow up visit with her. The hardest advice I have to follow is to get 8-10 hours of sleep daily. I have insomnia, and I'm terrible at napping, and she says "No wonder you're so tired!" She officiall called me a Super-Over-Achiever....is this a compliment? LOL She is pleased with how well I'm doing, though, so that is nice. She's added glucosamine to my vitamin regimin, as it might help with the neuropathy that is sometimes part of chemo (numbness in fingers, toes, etc.).
2. For a thyroid ultrasound. I've taken replacement thyroid hormones (Synthroid) since 1989 for hypothyroidism - a relatively commonplace problem that is completely controlable through a pill a day for the rest of my life. At my OB's physical, she noticed I had a little node that she could feel, so off to the ultrasound I went. In this case, they could read the results immediately, and all is well....my thyroid looks like it should for having been on Synthroid, and nothing else to report. Phew.
3. For a DEXA (bone density scan). As I mentioned before, my regular (not density) bone scan showed "dengeneration bilaterally in the hips" and this is cause for concern for osteoperosis or arthritis. This test will let us know...no results yet.
This morning was a lovely PEPS meeting, and the girls presented me with three great hats. I got tearful....the hats are lovely, but the women are even lovelier. I am blessed.
After the docs, Holly & Daven came over for a little visit and catch up, and it was good to see them. They're part of our regular routine and it's nice to have that routine.
My fatigue is improving - I did finally sleep last night - and I'm optimistic that tomorrow will be even easier. With Caley here, I had lots of help today, and that helped too.
Love to all - my handsome husband is home and it's time to eat the yummy dinner that Beth O. brought by yesterday (when we actually went out because our house was SO hot!). Thank you, Beth!
Love to all,
Kristina
Monday, August 15, 2005
Fatigue
Well, after a long day, today is the day I can claim to have the most fatigue. I hung in there almost until the end, but now I am simply bone weary - the kind that makes me want to curl up in a quivering, tearful ball. Have no fear, I'm going to go to bed instead of turning to tears, but there it is.
Hoping for a better tomorrow!
Kristina
Hoping for a better tomorrow!
Kristina
Monday
Well, here I am, day 6 after the second chemo, and I'm hanging in there. I'm particularly tired today because I didn't sleep well last night, and I'm solo today (Caley is at home because she woke up with a sore throat and we can't afford to expose me to that) and I was active this morning...and of course my little angel chose today not to nap! Wish me luck making it to bedtime, because I could use a nap of my own in a big way today.
Love,
Kristina
Love,
Kristina
Sunday, August 14, 2005
Welcome, Kevin!
Today I got to meet my newest, youngest friend, Kevin. He was born on Friday, and folks, I've got to tell you, he's just gorgeous! Here are a couple of pictures - one with yours truly (oh what a heaven to hold a new life!), and one with the beaming parents, Jon & Lynn.
As I write, I believe my friend Natasha is still in labor. Tasha, our thoughts and prayers remain with you!
We've had a great day so far. We woke up to a snuggly girl climbing into our bed, full of giggles; then we went out to breakfast and ran into Larry, Jo, and one year old Millie (and we all dined together spontaneously); then we ran a quick Target errand (always one more thing to pick up!) before heading to the Farmer's Market to pick up the latest treats - right now the donut peaches (peaches shaped more or less like donuts) are divine, and the raspberries are INCREDIBLE. Then, I put in a quick visit to baby Kevin and family, came home, and we feasted on the market's treats for lunch. Now, Tessa is napping, Ryan is on a bikeride, I'm stealing computer time, and I am about to go pack up some things to head to the park when Tessa awakens and Ryan returns, for we will be joining Marilyn's birthday party. What a lovely day!
Love,
Kristina
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