Today, filled with good spirits and energy, I started the day by heading to the hospital to do another Herceptin treatment and to get another expansion at the plastic surgeon's office, in addition to having my pre-op appointment with the plastic surgeon (next on the calendar: March 2; breast corrections on the existing implant, and removing the expander and replacing it with an implant on the other side).
I am so filled with energy and enthusiasm after my conference that I wanted to forget some of the day to day realities, but today they hit me.
The Herceptin infusion was fine, though I do have to schedule another MUGA (heart test) for next week to make sure it's not toxic. But the expansion....OUCH! I got another 60ccs injected into the expander, and it feels like I have a vice on my chest, or that I've just been punched in the chest, or that maybe I just got hit in the chest by a flying boulder, or something like that. The pressure and pain are beyond "uncomfortable" and into that zone where it's hard to think because the pain is distracting. I took a Vicodan, and it's not helping. My PS prescribed more Vicodan, and though I hate to take it (can't drive, have a harder time concentrating) I have to confess that it's hard to function without it. Right now, I'm STILL in pain, even though I had the VIcodan an hour ago and it should have taken effect by now.
ARGHHHHHHHH! I am so tired of this garbage.
I'm looking at the future, though. I bought a bikini to wear in Hawaii, and by then I will have two breasts, hopefully symmetrical ones. I won't have nipples, but nobody but Ryan will know (see) that. I have some major range of motion issues right now because of leftover issues from surgery and radiation, and the PS thinks that she can correct them by cutting through some of the tight scar tissue that is restraining me. I have elected to get my port out on March 2nd, as well, despite the fact that I continue to use it for Herceptin. I'm tired of Tessa's head bonking into it (it hurts!), and I'm tired of the bump under my skin. I'm tired of the reminder that it was placed there for chemo. I will get future Herceptin treatments through a regular IV. Today the nurses looked at my veins, and they said they've recovered, and IV will be fine.
Progress is being made. Mostly, I feel great. I'm just mad that I don't have the strength today to carry grocery bags, and that was on my list; I'm also mad that I don't have the capacity to work on some of my more intellectual pursuits because the d*** pain is so distracting.
By Hawaii, things will be better. That is my mantra!
Thursday, January 18, 2007
Tuesday, January 16, 2007
"Mommy, stop talking!"
Yesterday, Tessa and I dropped in on our neighbor Mira and her son briefly so that I could tell Mira about the conference, and try to share some of the inspiration that the stage IV women (in particular) gave me. Mira and I were talking about breast cancer, which isn't particularly unusual given our situations, and we were being very positive about it since both the kids were listening.
Tessa got very rude, insisting "I want to go home!" "Stop talking!" "BE QUIET!" and whining and complaining and interrupting. We really didn't talk for very long, so I was quite disconcerted by Tessa's rudeness; she has trouble with interrupting but in general I find her to be a polite child, and this was over the top and I was feeling quite frustrated with her.
When we walked home, I started asking her questions.
"Tessa, does it bother you when I start talking about breast cancer?"
"Yes."
"How do you feel when I talk about breast cancer?"
"Sad."
"Do you feel angry?"
"Yes."
"Why?"
"Because I feel sad and angry and I don't like breast cancer."
"Are you worried about anything?"
"Yes."
"Can you tell me about it?"
"I don't like breast cancer. I don't like chemotherapy. I don't like it when you're sick. It makes me feel sad."
"Are you worried it's going to come back?"
"Yes."
And there you have it. This is the truncated version of events, hitting the major points. Of course I tried to talk further abou it further with her, offering reassurances and assuring her that her feelings were okay and that she could talk to me about it; trying to let her have these horrible emotions and to acknowledge her feelings, while at the same time reassuring her that I will probably be okay and that the doctors take good care of me and I did SO much work to make sure that the cancer doesn't come back. She listened, asked just a few questions, and then changed the subject. When I gently tried to ask her more questions, she changed the subject again. She is sick to death of breast cancer. Not quite four years old, and she's an expert on cancer treatment. THIS makes me sad and angry.
But she's smart. And she knows that "probably" isn't a guarantee, and it frightens her. All she knows how to do is yell "Stop talking!" and hope that it will go away.
I need to walk the line between encouraging her to be in touch with her feelings, and allowing her some peace from breast cancer conversations. I'm not at all sure how to do that, but I'm trying. I need to reassure her that I will be well, without lying; I can't make promises. I wish more than anything that I could promise her to stay well.
I held her tight, cradling her in my lap like a baby. I told her that I loved her 100 times.
I need to show her, every day, my good health and that I am well. And I need to pray that I stay that way.
Love,
K
Tessa got very rude, insisting "I want to go home!" "Stop talking!" "BE QUIET!" and whining and complaining and interrupting. We really didn't talk for very long, so I was quite disconcerted by Tessa's rudeness; she has trouble with interrupting but in general I find her to be a polite child, and this was over the top and I was feeling quite frustrated with her.
When we walked home, I started asking her questions.
"Tessa, does it bother you when I start talking about breast cancer?"
"Yes."
"How do you feel when I talk about breast cancer?"
"Sad."
"Do you feel angry?"
"Yes."
"Why?"
"Because I feel sad and angry and I don't like breast cancer."
"Are you worried about anything?"
"Yes."
"Can you tell me about it?"
"I don't like breast cancer. I don't like chemotherapy. I don't like it when you're sick. It makes me feel sad."
"Are you worried it's going to come back?"
"Yes."
And there you have it. This is the truncated version of events, hitting the major points. Of course I tried to talk further abou it further with her, offering reassurances and assuring her that her feelings were okay and that she could talk to me about it; trying to let her have these horrible emotions and to acknowledge her feelings, while at the same time reassuring her that I will probably be okay and that the doctors take good care of me and I did SO much work to make sure that the cancer doesn't come back. She listened, asked just a few questions, and then changed the subject. When I gently tried to ask her more questions, she changed the subject again. She is sick to death of breast cancer. Not quite four years old, and she's an expert on cancer treatment. THIS makes me sad and angry.
But she's smart. And she knows that "probably" isn't a guarantee, and it frightens her. All she knows how to do is yell "Stop talking!" and hope that it will go away.
I need to walk the line between encouraging her to be in touch with her feelings, and allowing her some peace from breast cancer conversations. I'm not at all sure how to do that, but I'm trying. I need to reassure her that I will be well, without lying; I can't make promises. I wish more than anything that I could promise her to stay well.
I held her tight, cradling her in my lap like a baby. I told her that I loved her 100 times.
I need to show her, every day, my good health and that I am well. And I need to pray that I stay that way.
Love,
K
Inspiring Women
(Note: I don't have an update for my online aquaintance, whose message I posted below. She hasn't posted since then.)
--------
On Sunday night I returned home from the conference in San Francisco. I am completely inspired, and so grateful to have had the opportunity to become part of such a dynamic group of intelligent, articulate, courageous, inspirational women. The conference was wonderful on more levels than I can count, and I know that I am fortunate to have the opportunity to participate in this program from the beginning.
First of all, the conference organizers put us all up at The Ritz-Carlton in downtown San Francisco. The Ritz lived up to its name - their customer service is absolutely exceptional, and the hotel is lovely. (All of us were talking about how well we slept in their incredible beds - feather duvets and plush pillows; I love my bed at home but this was amazing and I wish I could have fit it in my suitcase!) My room had a little view through the buildings downtown out to the Bay, and every little detail was thought out. We worked really hard at the conference, and our time was accounted for from 7:30am to 10pm, but at the end of the day it was bliss to have some solitude in my room and to enjoy the ambience of the hotel. I never could have stayed at such a decadent hotel if it wasn't all comped, and I had fun with it.
Second, the conference organization was superb. I get really irritated at disorganization, and sometimes I went to teaching conferences that were so freeform that I felt like my time was being wasted or that I wasn't sure what my objectives were, but this conference was brilliantly planned and executed, and every minute felt valuable. The speakers were articulate, and the activities we did were structured enough to give us a strong sense of purpose while still allowing us to have creative input.
And then there's a food. I won't tell you how much I ate, only that I got up at 5:45am to hit the hotel treadmill...otherwise I might not have been able to zip my pants. :-)
But these things are just fluff, compared to the real work that was accomplished. I feel filled with a sense of purpose, and I am certain that many, many people will be helped through the work that was accomplished over the weekend.
The gist of the program that I am participating in is that I will be available to tell my story - of my life, including but not limited to my breast cancer experience - to women who are newly diagnosed with her2+ breast cancer, and that in doing so, I can offer hope. By sharing the fact that I am a person, first and foremost, with dreams and aspirations and fears and desires, I can send the message to women that their cancer does not define them. Second, by sharing some of my cancer experiences - some of which were better than expected, and some of which were darker than I could have imagined - I believe that I will show women that they are not alone. Third, and this is most important, I will be able to show what a face on the other side of the diagnosis can look like. I'm healthy, and I look it. I can show women that after a cancer diagnosis, they can be filled with hope for a long life, that they can be fit and active, that they can be filled with life and energy and passion. If I can do it, they can, too. Herceptin is part of, but not all, this message of hope. Herceptin makes me hopeful that I will live a long life, but it is not the whole story, and fortunately I do not need to spend all of my time talking about the drug.
My personal highlights of the conference:
1. I was so inspired by the women of the conference. There were 27 women like myself, and I often felt awed by their presence. Initially, I thought that everyone I met was "like me" - that is, early stage. I was wrong. It seemed like MOST of the women I spoke with were stage IV, and their energy, zest, passion, and laughter brought happy tears to my eyes. Some of the women have been recurrance free for years (One was told that she had about two months left to live when she was diagnosed with stage IV during her pregnancy with her second child; the doctors told her to terminate. Instead, she had the baby....and that was nine years ago, and she's still cancer free!); others have been in continuous treatment for years (one woman hadn't taken a break for nine years, if I understood her correctly). Disease free or still fighting, though, their intelligence, humor, courage and passion overwhelmed me. For the first time...and this was a major breakthrough for me...I felt that if I was diagnosed with a recurrance of stage IV, I would be able to accept it and still go on to live a long life. For the first time, I understood that such a diagnosis might be beatable. I could have wept from the relief of it. We all know that many women die...but this reminded me that some women LIVE, and they don't just survive, they thrive, despite it all. This is the biggest gift that the conference could have given me, and was (I believe) a very unintended side effect that I will be eternally grateful for.
2. I received another gift, of a different type. The conference included a one day writing workshop to craft our stories and create presentations for sharing in the future, and I received some beautiful compliments on my writing abilities. One of the professional writers, assigned to work with me, said, "I feel underqualified to critique your writing, as you are obviously such a fantastic writer that I am not sure what to tell you," and this compliment made my heart sing. I have aspirations of being a "real" writer, and that he assumed that I already was, well, it lifted my spirits more than I can say. Maybe I really AM a writer! Who knows what would happen if I ever took more than a half hour to write something, and then actually edited it. ;-)
3. Carolyn! Since Carolyn lives in the Bay area, when the conference was over she came to meet me on Sunday and we spent a half day together. BLISS!
I am told that, if I desire it, I will be kept VERY busy with this work. In addition to calls to work with the media (giving an interview, etc.), I may be asked to attend luncheons with oncologists to share my experiences as a patient, or I may be asked to attend sales meeting functions to share my experiences with the drug. However, the primary goal of this program is that I will reach out to other patients, newly diagnosed with her2+ breast cancer. Conferences are being set up, and I would be a speaker at such conferences.
We will see where this takes me!
In other news...
I have bitten off more than I can chew. Wait, that's not news, that's normal, but this time I've bitten off even more than usual. In the past two months, I have committed to the following:
1. Working with Genentech in a Patient Ambassador capacity, possibly traveling with some regularity, and giving presentations or speeches. This includes doing writing, and I have a final copy of a 3000 word essay due next week.
2. Working with the Komen Foundation to write all of the content for the Puget Sound affilliate Race for the Cure website. This includes interviewing about 15 race participants, team captains, corporate sponsors, survivors, co-survivors, etc. and then writing their stories for publication on the website; it also includes writing all of the race information (welcome messages, FAQs, registration information, etc.). The website needs to be up in March; I haven't really started this work yet.
3. Chairperson at the preschool co-op. This involves a few meetings per month, one of which I lead.
4. Running a 1/2 marathon April 15, and a full marathon October 7. I have a lot of training to do to make that happen!
5. Surgery (implant exchange and corrections) on March 2.
6. Continued follow up care; Herceptin every 3 weeks, oncology appointments, scans, tests, etc. I should be going to PT twice a week because I'm losing mobility on my left side again but I can't find time!
7. Hawaii April 19-29. This is GREAT and I look forward to it immensely, thinking about it more times a day than I can count and smiling as a result....but how on earth am I going to be ready with items 1-6 before I leave?!
Then, of course, there's my regular life; housework, budgeting, grocery shopping, errands. And my number one priority is still Tessa: I only have 1.5 years left at home with her before she's a full time student in kindergarten, and I intend to make use of those years. Cancer stole a year from us as I was a distracted, sick, tired mother, and I'm determined to make the most of the time we have together. I believe that I can accomplish these other goals without compromising my time with her (utilizing the time she's in preschool, or working in the evenings) but I'm still concerned that I give her the type of undistracted attention she needs. And I'd also like to be a good wife and partner/friend to Ryan: we need downtime together, too!
Phew. I feel tired just thinking of it all! However, I need to get to some of these things right now; instead of thinking about them I need to DO them. Forgive me if I don't blog as much as I want to, but it's too crazy around here to find the time as frequently as I wish.
With love,
Kristina
--------
On Sunday night I returned home from the conference in San Francisco. I am completely inspired, and so grateful to have had the opportunity to become part of such a dynamic group of intelligent, articulate, courageous, inspirational women. The conference was wonderful on more levels than I can count, and I know that I am fortunate to have the opportunity to participate in this program from the beginning.
First of all, the conference organizers put us all up at The Ritz-Carlton in downtown San Francisco. The Ritz lived up to its name - their customer service is absolutely exceptional, and the hotel is lovely. (All of us were talking about how well we slept in their incredible beds - feather duvets and plush pillows; I love my bed at home but this was amazing and I wish I could have fit it in my suitcase!) My room had a little view through the buildings downtown out to the Bay, and every little detail was thought out. We worked really hard at the conference, and our time was accounted for from 7:30am to 10pm, but at the end of the day it was bliss to have some solitude in my room and to enjoy the ambience of the hotel. I never could have stayed at such a decadent hotel if it wasn't all comped, and I had fun with it.
Second, the conference organization was superb. I get really irritated at disorganization, and sometimes I went to teaching conferences that were so freeform that I felt like my time was being wasted or that I wasn't sure what my objectives were, but this conference was brilliantly planned and executed, and every minute felt valuable. The speakers were articulate, and the activities we did were structured enough to give us a strong sense of purpose while still allowing us to have creative input.
And then there's a food. I won't tell you how much I ate, only that I got up at 5:45am to hit the hotel treadmill...otherwise I might not have been able to zip my pants. :-)
But these things are just fluff, compared to the real work that was accomplished. I feel filled with a sense of purpose, and I am certain that many, many people will be helped through the work that was accomplished over the weekend.
The gist of the program that I am participating in is that I will be available to tell my story - of my life, including but not limited to my breast cancer experience - to women who are newly diagnosed with her2+ breast cancer, and that in doing so, I can offer hope. By sharing the fact that I am a person, first and foremost, with dreams and aspirations and fears and desires, I can send the message to women that their cancer does not define them. Second, by sharing some of my cancer experiences - some of which were better than expected, and some of which were darker than I could have imagined - I believe that I will show women that they are not alone. Third, and this is most important, I will be able to show what a face on the other side of the diagnosis can look like. I'm healthy, and I look it. I can show women that after a cancer diagnosis, they can be filled with hope for a long life, that they can be fit and active, that they can be filled with life and energy and passion. If I can do it, they can, too. Herceptin is part of, but not all, this message of hope. Herceptin makes me hopeful that I will live a long life, but it is not the whole story, and fortunately I do not need to spend all of my time talking about the drug.
My personal highlights of the conference:
1. I was so inspired by the women of the conference. There were 27 women like myself, and I often felt awed by their presence. Initially, I thought that everyone I met was "like me" - that is, early stage. I was wrong. It seemed like MOST of the women I spoke with were stage IV, and their energy, zest, passion, and laughter brought happy tears to my eyes. Some of the women have been recurrance free for years (One was told that she had about two months left to live when she was diagnosed with stage IV during her pregnancy with her second child; the doctors told her to terminate. Instead, she had the baby....and that was nine years ago, and she's still cancer free!); others have been in continuous treatment for years (one woman hadn't taken a break for nine years, if I understood her correctly). Disease free or still fighting, though, their intelligence, humor, courage and passion overwhelmed me. For the first time...and this was a major breakthrough for me...I felt that if I was diagnosed with a recurrance of stage IV, I would be able to accept it and still go on to live a long life. For the first time, I understood that such a diagnosis might be beatable. I could have wept from the relief of it. We all know that many women die...but this reminded me that some women LIVE, and they don't just survive, they thrive, despite it all. This is the biggest gift that the conference could have given me, and was (I believe) a very unintended side effect that I will be eternally grateful for.
2. I received another gift, of a different type. The conference included a one day writing workshop to craft our stories and create presentations for sharing in the future, and I received some beautiful compliments on my writing abilities. One of the professional writers, assigned to work with me, said, "I feel underqualified to critique your writing, as you are obviously such a fantastic writer that I am not sure what to tell you," and this compliment made my heart sing. I have aspirations of being a "real" writer, and that he assumed that I already was, well, it lifted my spirits more than I can say. Maybe I really AM a writer! Who knows what would happen if I ever took more than a half hour to write something, and then actually edited it. ;-)
3. Carolyn! Since Carolyn lives in the Bay area, when the conference was over she came to meet me on Sunday and we spent a half day together. BLISS!
I am told that, if I desire it, I will be kept VERY busy with this work. In addition to calls to work with the media (giving an interview, etc.), I may be asked to attend luncheons with oncologists to share my experiences as a patient, or I may be asked to attend sales meeting functions to share my experiences with the drug. However, the primary goal of this program is that I will reach out to other patients, newly diagnosed with her2+ breast cancer. Conferences are being set up, and I would be a speaker at such conferences.
We will see where this takes me!
In other news...
I have bitten off more than I can chew. Wait, that's not news, that's normal, but this time I've bitten off even more than usual. In the past two months, I have committed to the following:
1. Working with Genentech in a Patient Ambassador capacity, possibly traveling with some regularity, and giving presentations or speeches. This includes doing writing, and I have a final copy of a 3000 word essay due next week.
2. Working with the Komen Foundation to write all of the content for the Puget Sound affilliate Race for the Cure website. This includes interviewing about 15 race participants, team captains, corporate sponsors, survivors, co-survivors, etc. and then writing their stories for publication on the website; it also includes writing all of the race information (welcome messages, FAQs, registration information, etc.). The website needs to be up in March; I haven't really started this work yet.
3. Chairperson at the preschool co-op. This involves a few meetings per month, one of which I lead.
4. Running a 1/2 marathon April 15, and a full marathon October 7. I have a lot of training to do to make that happen!
5. Surgery (implant exchange and corrections) on March 2.
6. Continued follow up care; Herceptin every 3 weeks, oncology appointments, scans, tests, etc. I should be going to PT twice a week because I'm losing mobility on my left side again but I can't find time!
7. Hawaii April 19-29. This is GREAT and I look forward to it immensely, thinking about it more times a day than I can count and smiling as a result....but how on earth am I going to be ready with items 1-6 before I leave?!
Then, of course, there's my regular life; housework, budgeting, grocery shopping, errands. And my number one priority is still Tessa: I only have 1.5 years left at home with her before she's a full time student in kindergarten, and I intend to make use of those years. Cancer stole a year from us as I was a distracted, sick, tired mother, and I'm determined to make the most of the time we have together. I believe that I can accomplish these other goals without compromising my time with her (utilizing the time she's in preschool, or working in the evenings) but I'm still concerned that I give her the type of undistracted attention she needs. And I'd also like to be a good wife and partner/friend to Ryan: we need downtime together, too!
Phew. I feel tired just thinking of it all! However, I need to get to some of these things right now; instead of thinking about them I need to DO them. Forgive me if I don't blog as much as I want to, but it's too crazy around here to find the time as frequently as I wish.
With love,
Kristina
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