Today was The Day. It was a success! The I AM THE CURE program was wildly successful, and I'm grateful to have been a part of it.
I am exhausted. Absolutely bone tired. The stress of this week - Carmelia's fundraiser, Race for the Cure, and that horrible day of scans - has me completely wiped out.
Next week is a new week, filled with playdates, parks, pools, working out, walking Shep, and the like. I can't wait!
But now, at 2:20pm, I have to go lay down. Exhausted!
My love to Jenny, who ran with me, helped in a thousand ways, and cried with me when the time was right. xoxox
Love,
Kristina
PS I met a 33 year survivor today, as well as a number of 25+ year survivors. Some hugged me, and told me that one day I could walk in their group. They told me that I would make it. I choose to believe them!
Saturday, June 16, 2007
Friday, June 15, 2007
It could have been me
Tonight I went out and celebrated my clean MRI with friends, Ryan, and Tessa. I am grateful with every cell of my body that the beast is at bay, and that I have been granted a reprieve. I've had far too many glasses of wine, eaten too much, and laughed deeply with my friends. I've kissed my daughter, held my husband tight. I have much to celebrate.
I came home tonight and read the following post on "the boards" from a young woman - beautiful, strong, positive - who is living with mets. I know it could have been me; I know that I could be in her shoes. I hate that this is what the disease does to people; I hate that anyone could possibly experience this level of grief.
I am eternally grateful that it's not me yet. I am resentful that it must be anyone. I know what breast cancer can do.
When you wonder if you should donate to "the cause," please remember this. Cancer isn't pink ribbons, it's this. It MUST be stopped.
-----------------
Tuesday night, I collapsed with a seizure at home. After several gruesome hours in emerg that I would not wish on a dog, I was diagnosed with nine massive tumours in my brain, which were causing quite a bit of swelling. They now have that under control for the moment and I am on a weekend pass home (hurray) on massive doses of drugs I cannot be bothered to pronounce - steroids, etc.Just to make it all more fun, my eight year old saw the whole thing. He is OK. I had this strange presentiment and luckily called a neighbour over who comforted him. My six year old heard my tortured breathing and is scared of me. Can someone please explain why this monster has to take everything away from me? I so wanted to protect them from this disgusting disease.Nancy, thank you for posting pictures of your head after whole brain radiation which I start on Monday. This site means so much because I knew exactly what my options were even as I lay in emerg. Bless you Nancy for your dignity and your courage and your humour in telling your story. You have no idea what it has meant to me over the last few days to have some idea what is ahead of me.I am remarkably fine considering that my brain looks like a train wreck on an CT. I have a perfectly normal neurological testing now. I seem to function fine. I was dragging my leg and that has gone away entirely.Victory? Well, I did have mine. As I lay gasping for air in this horrible seizure, I was, gruesomely, conscious. I could hear my own horrible breathing growing more and more infrequent. The only time I have ever heard someone breathe like that is when my grandmother died. I thought that was it for me. I have never wanted air so much. I could feel my husband's tears dripping down my face, and I chose to exhale and tell him that I loved him. I chose love over breath itself. Do the same if you have to. Be strong. You have all been so good to me over the last few months.
---------------
Do you hate cancer as much as I do? Do something about it. Race for the Cure is tomorrow - join, donate, SOMETHING. You can donate to my 3-Day website using the link on the right. Do something. NOBODY should have to endure this. Nobody.
I HATE CANCER. This isn't a ploy, this isn't a scam, this is just the way it is. And I hate it.
It could have been me. I have been granted a reprieve, but it could have been me.
I came home tonight and read the following post on "the boards" from a young woman - beautiful, strong, positive - who is living with mets. I know it could have been me; I know that I could be in her shoes. I hate that this is what the disease does to people; I hate that anyone could possibly experience this level of grief.
I am eternally grateful that it's not me yet. I am resentful that it must be anyone. I know what breast cancer can do.
When you wonder if you should donate to "the cause," please remember this. Cancer isn't pink ribbons, it's this. It MUST be stopped.
-----------------
Tuesday night, I collapsed with a seizure at home. After several gruesome hours in emerg that I would not wish on a dog, I was diagnosed with nine massive tumours in my brain, which were causing quite a bit of swelling. They now have that under control for the moment and I am on a weekend pass home (hurray) on massive doses of drugs I cannot be bothered to pronounce - steroids, etc.Just to make it all more fun, my eight year old saw the whole thing. He is OK. I had this strange presentiment and luckily called a neighbour over who comforted him. My six year old heard my tortured breathing and is scared of me. Can someone please explain why this monster has to take everything away from me? I so wanted to protect them from this disgusting disease.Nancy, thank you for posting pictures of your head after whole brain radiation which I start on Monday. This site means so much because I knew exactly what my options were even as I lay in emerg. Bless you Nancy for your dignity and your courage and your humour in telling your story. You have no idea what it has meant to me over the last few days to have some idea what is ahead of me.I am remarkably fine considering that my brain looks like a train wreck on an CT. I have a perfectly normal neurological testing now. I seem to function fine. I was dragging my leg and that has gone away entirely.Victory? Well, I did have mine. As I lay gasping for air in this horrible seizure, I was, gruesomely, conscious. I could hear my own horrible breathing growing more and more infrequent. The only time I have ever heard someone breathe like that is when my grandmother died. I thought that was it for me. I have never wanted air so much. I could feel my husband's tears dripping down my face, and I chose to exhale and tell him that I loved him. I chose love over breath itself. Do the same if you have to. Be strong. You have all been so good to me over the last few months.
---------------
Do you hate cancer as much as I do? Do something about it. Race for the Cure is tomorrow - join, donate, SOMETHING. You can donate to my 3-Day website using the link on the right. Do something. NOBODY should have to endure this. Nobody.
I HATE CANCER. This isn't a ploy, this isn't a scam, this is just the way it is. And I hate it.
It could have been me. I have been granted a reprieve, but it could have been me.
No evidence of malignancy - Tears of JOY!
At 11:50am I couldn't stand it any longer, I had to call.
I got put on hold.
Then, after I explained what I was looking for, I got put on hold again.
Then, the receptionist came back and said that the results were ready but I'd have to wait until they faxed them over.
Hold again.
At this point, I was shaking and near a nervous breakdown. Scenerio after scenerio played out in my head. I was parked near Qwest, waiting to go do my volunteer work, and I thought "if it's cancer how will I get this done? How will I do my job today and tomorrow?" which was the first thing that popped into my head, but not nearly as scary as "How could I ever put my family through this again? I don't feel strong enough yet. I'm so scared..." and then the fear stuck and it was just a vibration of fear running through my body.
More holding. More shaking.
To distract myself, I played a little game. "I'll turn on the radio, and whatever song is playing will tell me the answer to my question: am I okay?" I know this is stupid, but I needed SOME kind of distraction.
The song that was playing? "Crazy" by Gnarls Barkley. "You must be crazy," it told me. Well, yes, I knew that already, and didn't need the radio to tell me.
She came back, calling, "Are you still there?" "Yes," I whispered. Now I was really shaking.
She said, "Mumble mumble mumble Dr. Rinn's out of the office so we had another doc take a look but mumble mumble mumble mumble there's no evidence of malignancy. Oh, I'm sorry, I should have said THAT first!"
I broke down and cried, and then, embarrassed, told her that I didn't know why I was crying for GOOD news.
GOOD news. Thank God. This was really, really scary.
And then I went and did set-up at Qwest Field for I AM THE CURE. The race is going to be a HUGE success tomorrow and I can't wait to see it all come together!
Thank you to those of you who went through it with me, and who sent out prayers and thoughts. We've made it through another round, and now we can enjoy the sunshine.
(I hate cancer.)
Love,
Kristina
I got put on hold.
Then, after I explained what I was looking for, I got put on hold again.
Then, the receptionist came back and said that the results were ready but I'd have to wait until they faxed them over.
Hold again.
At this point, I was shaking and near a nervous breakdown. Scenerio after scenerio played out in my head. I was parked near Qwest, waiting to go do my volunteer work, and I thought "if it's cancer how will I get this done? How will I do my job today and tomorrow?" which was the first thing that popped into my head, but not nearly as scary as "How could I ever put my family through this again? I don't feel strong enough yet. I'm so scared..." and then the fear stuck and it was just a vibration of fear running through my body.
More holding. More shaking.
To distract myself, I played a little game. "I'll turn on the radio, and whatever song is playing will tell me the answer to my question: am I okay?" I know this is stupid, but I needed SOME kind of distraction.
The song that was playing? "Crazy" by Gnarls Barkley. "You must be crazy," it told me. Well, yes, I knew that already, and didn't need the radio to tell me.
She came back, calling, "Are you still there?" "Yes," I whispered. Now I was really shaking.
She said, "Mumble mumble mumble Dr. Rinn's out of the office so we had another doc take a look but mumble mumble mumble mumble there's no evidence of malignancy. Oh, I'm sorry, I should have said THAT first!"
I broke down and cried, and then, embarrassed, told her that I didn't know why I was crying for GOOD news.
GOOD news. Thank God. This was really, really scary.
And then I went and did set-up at Qwest Field for I AM THE CURE. The race is going to be a HUGE success tomorrow and I can't wait to see it all come together!
Thank you to those of you who went through it with me, and who sent out prayers and thoughts. We've made it through another round, and now we can enjoy the sunshine.
(I hate cancer.)
Love,
Kristina
by noon
I should find out by noon. I'll count on 1pm. By then, I'll know.
I'll be at Qwest Field at that time, but I will update the blog when I have answers...
I'll be at Qwest Field at that time, but I will update the blog when I have answers...
nothing to report
With a little help from Ativan, I made it through the day yesterday. I don't have any news; they told me that they'd have results in 24-48 hours. I'll start calling at noon today, as I do not have the patience to wait until Monday with this hanging over my head.
I alternate between demobilizing fear and the belief that all is well.
Today I'm off to set up for Race for the Cure, which is tomorrow. I'm excited to see our work come to its culmination - I believe we are doing good things. I AM THE CURE! :-)
I alternate between demobilizing fear and the belief that all is well.
Today I'm off to set up for Race for the Cure, which is tomorrow. I'm excited to see our work come to its culmination - I believe we are doing good things. I AM THE CURE! :-)
Wednesday, June 13, 2007
interview link
My KJAQ interview is now online:
http://965jackfm.com/pages/505554.php
I'm having a hard day. I can't get the MRI out of my head. But now...I'm off to get ready for the Carmelia's fundraiser (for the 3-Day) tonight. Hopefully that will make me feel better!
http://965jackfm.com/pages/505554.php
I'm having a hard day. I can't get the MRI out of my head. But now...I'm off to get ready for the Carmelia's fundraiser (for the 3-Day) tonight. Hopefully that will make me feel better!
Tuesday, June 12, 2007
Scary thoughts
I just posted this on my survivor website (after a hiatus, I felt drawn to return), and thought I'd risk posting it here.
For friends and family to read this concerns me; I don't want to unnecessarily freak anyone out. The odds are, likely, in my favor that I'm worrying over "nothing." My oncologist has good reason to believe that what I'm worried about is not the case, and I trust her opinions.
But, annually, I have to go for a series of scans. As Thursday approaches, I am a bundle of nerves and emotion. Actually, just trying to identify what those emotions are, to describe them here on my blog, gives me a sudden urge to throw up. I'm pretty sure that I've over-used the word "terrified" on this blog, but it's all I can come up with. My approaching scan terrifies me.
I hate that I'm saying that. I hate that I have not rounded some corner from which I can look back, glowing with wisdom, to inspire those who are behind me in this journey. I'm in a position to inspire women through my work on the 3-Day, the Race for the Cure, and the local Komen office, as well as through Genentech, and I've spent a good deal of the last week telling listeners on the radio how well I feel and how glad I am to have this behind me. MOST of the time, that's true. My life is a testament to how well I feel. But today I find myself, literally, quaking with fear.
So here's the post I wrote to my survivor "friends" on the internet. They have applauded my honesty, and this gives me courage. I think it's important to be honest here, too, despite my best desire to be 100% PollyAnna and to cure myself through positive thinking (ha!).
To those of you who are following behind me, know that this is only part of the truth. Today's fear is palpable (just like a lump...did I really just use that word?!) but hopefully the relief will be just as strong, and then I will be ready to fight for the masses again.
----------------------------
I have not had an MRI in two years, since my initial diagnosis. I have been in recon for a year, so we put it off, and now it's time.
I have a number of small lumps. Tiny, sand-like ones in my incision on the healthy side, and a larger (inch?) one also on the healthy side. We (oncologist and I) suspect that the tiny sand-like ones are sutures that have scar tissue around them, and that the larger one is the edge of the implant. They're relatively new; I only did my implant exchange on Mar 2 and they're since then. I've had regular clinical exams, and my tumor markers are on the low side of normal with a downward trend.
But I won't know that I'm okay until we get it checked out.
I'm scared. My first MRI was a horrible experience...how can anyone enjoy that cold, loud, claustrophobic tube? And knowing that you are there to Look For Cancer? It's creepy, surreal, and awful.I have five appointments on Thursday: oncologist, Herceptin, MRI, MUGA, and physical therapy. I haven't had a day like that in a long time and being in Cancerland that long is freaking me out. Worrying about the lumps is freaking me out.
I haven't felt this scared in a while. I know that it's normal, and that most people freak out for their yearly scans. Knowing that doesn't make it easier, even though it should.I will be asking for an Ativan or equivalent at my onc meeting. I can't go from 8:40am (first appointment) until 4:45pm (end of last appointment) in Cancerland without some help. I can not lie in that tube without screaming without a little help. I'm worried that I will get even a false positive - not unlikely - and that I will lose my mind. I'm worried that I will re-experience my first MRI and hear "Sorry but yes you have cancer and it's more than we thought and probably in the nodes" and that I will have to face another year of torture when I'm most trying to put it all behind me. I am Freaking OUT!
Where's my inner PollyAnna? I need her right now and she's deserting me?!This weekend is Race for the Cure and I'm rolling out I AM THE CURE in Seattle at that program. I have a fundraiser tomorrow night for the 3-Day. I have a survivor support group next week. I'm training again (sciatic appears healed) and ran 50 minutes today for the first time in weeks. I spent part of the day at the beach with my daughter. So why am I doing this to myself? I'm channeling my energy in positive ways but inside I'm a mess.
I'm in a position through my work with Komen to "inspire" women. I've been doing radio and newspaper interviews, and I'm becoming a local voice for Komen. So why, today, do I feel like a sham? I feel like I'm totally faking it and that if anybody knew what I was really thinking I'd scare them instead of inspiring them.
So, ladies, I'm throwing it out to you. Can someone please talk me down? Or remind me that, most likely, by the end of the day on Thursday I will know that things are okay?
For friends and family to read this concerns me; I don't want to unnecessarily freak anyone out. The odds are, likely, in my favor that I'm worrying over "nothing." My oncologist has good reason to believe that what I'm worried about is not the case, and I trust her opinions.
But, annually, I have to go for a series of scans. As Thursday approaches, I am a bundle of nerves and emotion. Actually, just trying to identify what those emotions are, to describe them here on my blog, gives me a sudden urge to throw up. I'm pretty sure that I've over-used the word "terrified" on this blog, but it's all I can come up with. My approaching scan terrifies me.
I hate that I'm saying that. I hate that I have not rounded some corner from which I can look back, glowing with wisdom, to inspire those who are behind me in this journey. I'm in a position to inspire women through my work on the 3-Day, the Race for the Cure, and the local Komen office, as well as through Genentech, and I've spent a good deal of the last week telling listeners on the radio how well I feel and how glad I am to have this behind me. MOST of the time, that's true. My life is a testament to how well I feel. But today I find myself, literally, quaking with fear.
So here's the post I wrote to my survivor "friends" on the internet. They have applauded my honesty, and this gives me courage. I think it's important to be honest here, too, despite my best desire to be 100% PollyAnna and to cure myself through positive thinking (ha!).
To those of you who are following behind me, know that this is only part of the truth. Today's fear is palpable (just like a lump...did I really just use that word?!) but hopefully the relief will be just as strong, and then I will be ready to fight for the masses again.
----------------------------
I have not had an MRI in two years, since my initial diagnosis. I have been in recon for a year, so we put it off, and now it's time.
I have a number of small lumps. Tiny, sand-like ones in my incision on the healthy side, and a larger (inch?) one also on the healthy side. We (oncologist and I) suspect that the tiny sand-like ones are sutures that have scar tissue around them, and that the larger one is the edge of the implant. They're relatively new; I only did my implant exchange on Mar 2 and they're since then. I've had regular clinical exams, and my tumor markers are on the low side of normal with a downward trend.
But I won't know that I'm okay until we get it checked out.
I'm scared. My first MRI was a horrible experience...how can anyone enjoy that cold, loud, claustrophobic tube? And knowing that you are there to Look For Cancer? It's creepy, surreal, and awful.I have five appointments on Thursday: oncologist, Herceptin, MRI, MUGA, and physical therapy. I haven't had a day like that in a long time and being in Cancerland that long is freaking me out. Worrying about the lumps is freaking me out.
I haven't felt this scared in a while. I know that it's normal, and that most people freak out for their yearly scans. Knowing that doesn't make it easier, even though it should.I will be asking for an Ativan or equivalent at my onc meeting. I can't go from 8:40am (first appointment) until 4:45pm (end of last appointment) in Cancerland without some help. I can not lie in that tube without screaming without a little help. I'm worried that I will get even a false positive - not unlikely - and that I will lose my mind. I'm worried that I will re-experience my first MRI and hear "Sorry but yes you have cancer and it's more than we thought and probably in the nodes" and that I will have to face another year of torture when I'm most trying to put it all behind me. I am Freaking OUT!
Where's my inner PollyAnna? I need her right now and she's deserting me?!This weekend is Race for the Cure and I'm rolling out I AM THE CURE in Seattle at that program. I have a fundraiser tomorrow night for the 3-Day. I have a survivor support group next week. I'm training again (sciatic appears healed) and ran 50 minutes today for the first time in weeks. I spent part of the day at the beach with my daughter. So why am I doing this to myself? I'm channeling my energy in positive ways but inside I'm a mess.
I'm in a position through my work with Komen to "inspire" women. I've been doing radio and newspaper interviews, and I'm becoming a local voice for Komen. So why, today, do I feel like a sham? I feel like I'm totally faking it and that if anybody knew what I was really thinking I'd scare them instead of inspiring them.
So, ladies, I'm throwing it out to you. Can someone please talk me down? Or remind me that, most likely, by the end of the day on Thursday I will know that things are okay?
Monday, June 11, 2007
interview on the radio
So, as I mentioned before, I was on KJAQ this weekend (8am on a Sunday - not a prime spot!). The interviewer, Kimi, was gracious and kind to give Komen 30 minutes to discuss issues surrounding breast cancer, to put out the plea for joining Race for the Cure (it happens this Saturday!), and to tell my story. Soon, you'll be able to hear it here:
http://www.965jackfm.com/pages/505554.php
(As of today I don't see it but this is where all of Kimi's interviews are posted.)
I am not famous, and perhaps only 2 people in the world heard the interview (Susan & I listened together, despite the kids' protests that it was "booooorrrring" and they wanted to watch TV or listen to kid music) but I'm still proud of it.
I was also on some other stations this weekend, and heard after the fact which ones at which times - here's the info I got:
The Sandusky interviews ran on Sunday, June 10 on the Morning Magazine Show on the stations below. Starting today, listeners can tune into the interviews again on the website, www.warm1069.com There will be a full podcast available for download through the week up until the Race.
Here were the air times for each station on Sunday.
KRWM 106.9 FM - 5:30 am
KKNW 1105 AM - 6:00 am
KWJZ 98.9 FM - 6:30 am
KIXI 880 AM - 6:30 am
Here's a direct link to that interview summary:
http://warm1069.com/rwn.asp?displayOption=&contentGUID={947DD0CE-B54B-4006-A6B2-CC35F0087AF7}&groupName=KRWM%20Cares&siteGUID={AFEDDA3C-2BDA-4E6A-8259-8B3901703883
....and to the MP3 to listen:
http://www.warm1069.com/podcast/media/smm061007.mp3
My fame is, ummm, rather small. But still, if I reached someone and made a difference, then it's all worthwhile!
http://www.965jackfm.com/pages/505554.php
(As of today I don't see it but this is where all of Kimi's interviews are posted.)
I am not famous, and perhaps only 2 people in the world heard the interview (Susan & I listened together, despite the kids' protests that it was "booooorrrring" and they wanted to watch TV or listen to kid music) but I'm still proud of it.
I was also on some other stations this weekend, and heard after the fact which ones at which times - here's the info I got:
The Sandusky interviews ran on Sunday, June 10 on the Morning Magazine Show on the stations below. Starting today, listeners can tune into the interviews again on the website, www.warm1069.com There will be a full podcast available for download through the week up until the Race.
Here were the air times for each station on Sunday.
KRWM 106.9 FM - 5:30 am
KKNW 1105 AM - 6:00 am
KWJZ 98.9 FM - 6:30 am
KIXI 880 AM - 6:30 am
Here's a direct link to that interview summary:
http://warm1069.com/rwn.asp?displayOption=&contentGUID={947DD0CE-B54B-4006-A6B2-CC35F0087AF7}&groupName=KRWM%20Cares&siteGUID={AFEDDA3C-2BDA-4E6A-8259-8B3901703883
....and to the MP3 to listen:
http://www.warm1069.com/podcast/media/smm061007.mp3
My fame is, ummm, rather small. But still, if I reached someone and made a difference, then it's all worthwhile!
Cancerland
On Thursday, I have to spend the day in Cancerland.
My schedule on Thursday is:
8:40am Rinn (oncologist)
9am Herceptin
11:45am MUGA
1pm MRI
3:45pm physical therapy
8pm-10pm Cancer Focus Group
Dr. Rinn will be discussing my cholesterol (climbing, probably a side effect of the drugs), my thyroid (out of whack again), and my horrible side effects (Aleve does not relieve my aches and pains, which are getting worse; the menopausal symptoms are horrid, too). Herceptin means needles and an IV which hurts now that I don't have a port; it also means spending time in the chemo ward which is not the most fun place in the world. The MUGA tests to make sure I'm not experiencing early heart failure. The MRI is looking for cancer in my body; I have several lumps in my left breast that are likely leftovers from reconstruction (the edge of the implant, etc.) but we need to be sure. The MRI is a claustrophobic tube with noise as loud as a jet, and I had a dreadful experience when I did it last (two years ago). Because of my recon I haven't done an MRI since my diagnosis, and I'm terrified at what it might find. Physical therapy will actually be a treat because Adrienne is wonderful and can do accupressure and massage to relieve my aches and pains, and she's a joy to be with....I will need her at the end of those other appointments. Then, to earn some extra $, I'm going to a focus group about a breast cancer website at the end of the day. Let's hope that they don't ask me too many intellectual questions at that point!
I hate Cancerland. I like the days where I go to the park with Tessa and her friends much better.
All this makes me want to take a nap while I'm thinking of it. :-(
Kristina
My schedule on Thursday is:
8:40am Rinn (oncologist)
9am Herceptin
11:45am MUGA
1pm MRI
3:45pm physical therapy
8pm-10pm Cancer Focus Group
Dr. Rinn will be discussing my cholesterol (climbing, probably a side effect of the drugs), my thyroid (out of whack again), and my horrible side effects (Aleve does not relieve my aches and pains, which are getting worse; the menopausal symptoms are horrid, too). Herceptin means needles and an IV which hurts now that I don't have a port; it also means spending time in the chemo ward which is not the most fun place in the world. The MUGA tests to make sure I'm not experiencing early heart failure. The MRI is looking for cancer in my body; I have several lumps in my left breast that are likely leftovers from reconstruction (the edge of the implant, etc.) but we need to be sure. The MRI is a claustrophobic tube with noise as loud as a jet, and I had a dreadful experience when I did it last (two years ago). Because of my recon I haven't done an MRI since my diagnosis, and I'm terrified at what it might find. Physical therapy will actually be a treat because Adrienne is wonderful and can do accupressure and massage to relieve my aches and pains, and she's a joy to be with....I will need her at the end of those other appointments. Then, to earn some extra $, I'm going to a focus group about a breast cancer website at the end of the day. Let's hope that they don't ask me too many intellectual questions at that point!
I hate Cancerland. I like the days where I go to the park with Tessa and her friends much better.
All this makes me want to take a nap while I'm thinking of it. :-(
Kristina
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