3/25/12
3/20/12
Scheduling
I'm all about the scheduling right now. When do I do what, when do I take what, when will we know what... things keep changing, things get put off or pulled forward, things get added and subtracted, and I have to keep track of it all pretty darned closely.
One new thing added is steroids, after my nice 2.5 month vacation from the rotten things. So back to the bloating and the multiple chins and blood sugar problems (again!)... but on the other hand, the headaches and nausea are considerably better, the dizziness is less, and I'm able to eat again. And even better, I don't seem to want to slip off into Nap Time on a constant basis. It's all a trade-off...
As for the brain mets: my consultation with the radiologist at the UofMN is next Wednesday, and then the radiation treatment (probably Gamma Knife) will start very early on April 4. It's a one-time treatment, but fairly complicated, so it will take a while. Theoretically I will go home either the same day or after only one overnight, assuming everything goes as planned.
Pretty amazing when you think about it. Just a few years ago treatment for tumors deep in the cerebellum would have been very risky and largely unsuccessful, but stereotactic radiation procedures have advanced a lot in a short period of time. My surgeon is one of the most experienced in the country for this sort of procedure, so I'm in good hands and can hope for as good a result as possible under the circumstances.
I don't have all the information yet, and of course every patient is different and outcomes cannot be predicted very accurately, but my understanding is that it will probably take another month or so before the full effect of the radiation will be known - I imagine I'll have to have another MRI at that point.
So that's all the information I can give at the moment. The only other bit of news to report is that I will be continuing with the treatment of Afinitor and Exemestane throughout April. I won't have the PET/CT scan until around the same time as the MRI, but my funny old tumor marker test showed that the trend seems to be going in the right direction, so Dr. Bouncy is hopeful that the treatment is working fairly well - at least on some of the tumors, if not all (the very painful hip/pelvic tumor still seems to be growing, as does the one on my spine, but the ones in my ribs seem less painful).
Tumor markers are a very rough 'guesstimate' sort of thing - they don't tell you which tumors are doing what, how many tumors there are or where, and sometimes they just plain don't reflect reality in any way. They are simply an occasionally useful indicator of how much tumor activity there may or may not be at a given time. In my case there was a huge flareup in my tumor marker test at the end of December, at the same time that my scans indicated that there was a huge progression (growth in size, number, and/or activity levels of tumors). In my case the tumor markers went from 11.x in October to 85.x in December, and now it's at 57.x
Now, I had lots of big ol' tumors in Oct. when it was at a mere 11, so 57 isn't anything near a miracle. And those brain tumors cropped up in the meantime. So you can see that it's a very rough indicator, indeed. Still, the downward trend in the past couple months is a small ray of light, and we'll take what we can get.
I'll keep reporting as I can, and if the time comes that I can't, I'll try to have my mom or darling man sub for me a bit. Wish me luck!
One new thing added is steroids, after my nice 2.5 month vacation from the rotten things. So back to the bloating and the multiple chins and blood sugar problems (again!)... but on the other hand, the headaches and nausea are considerably better, the dizziness is less, and I'm able to eat again. And even better, I don't seem to want to slip off into Nap Time on a constant basis. It's all a trade-off...
As for the brain mets: my consultation with the radiologist at the UofMN is next Wednesday, and then the radiation treatment (probably Gamma Knife) will start very early on April 4. It's a one-time treatment, but fairly complicated, so it will take a while. Theoretically I will go home either the same day or after only one overnight, assuming everything goes as planned.
Pretty amazing when you think about it. Just a few years ago treatment for tumors deep in the cerebellum would have been very risky and largely unsuccessful, but stereotactic radiation procedures have advanced a lot in a short period of time. My surgeon is one of the most experienced in the country for this sort of procedure, so I'm in good hands and can hope for as good a result as possible under the circumstances.
I don't have all the information yet, and of course every patient is different and outcomes cannot be predicted very accurately, but my understanding is that it will probably take another month or so before the full effect of the radiation will be known - I imagine I'll have to have another MRI at that point.
So that's all the information I can give at the moment. The only other bit of news to report is that I will be continuing with the treatment of Afinitor and Exemestane throughout April. I won't have the PET/CT scan until around the same time as the MRI, but my funny old tumor marker test showed that the trend seems to be going in the right direction, so Dr. Bouncy is hopeful that the treatment is working fairly well - at least on some of the tumors, if not all (the very painful hip/pelvic tumor still seems to be growing, as does the one on my spine, but the ones in my ribs seem less painful).
Tumor markers are a very rough 'guesstimate' sort of thing - they don't tell you which tumors are doing what, how many tumors there are or where, and sometimes they just plain don't reflect reality in any way. They are simply an occasionally useful indicator of how much tumor activity there may or may not be at a given time. In my case there was a huge flareup in my tumor marker test at the end of December, at the same time that my scans indicated that there was a huge progression (growth in size, number, and/or activity levels of tumors). In my case the tumor markers went from 11.x in October to 85.x in December, and now it's at 57.x
Now, I had lots of big ol' tumors in Oct. when it was at a mere 11, so 57 isn't anything near a miracle. And those brain tumors cropped up in the meantime. So you can see that it's a very rough indicator, indeed. Still, the downward trend in the past couple months is a small ray of light, and we'll take what we can get.
I'll keep reporting as I can, and if the time comes that I can't, I'll try to have my mom or darling man sub for me a bit. Wish me luck!
3/15/12
Not Happy, Not Surprised
The news is Not Good.
I just got off the phone with Dr. Bouncy, just a couple hours after my scan was finished. There are several tumors in my cerebellum. Nothing they can see above that, which is good - it means that there's nothing in the areas that affect my thinking self, who I am. But it is probably the cause of the headaches and nausea and dizziness I've been having. So the next step is radiation.
The largest tumor is 1cm, so Dr. B is hoping that I will be a candidate for stereotactic radiosurgery - possibly either Gammaknife or Cyberknife - rather than having to go through whole brain radiation. Of course, there is the chance that there are microtumors further up that the radiation won't then get... but on the other hand, I think the radiation on my hip actually made the tumor on the left side grow more aggressively, so I'm not too enthusiastic about irradiating my whole brain.
So they're sending me to the UofMN, to talk to a radiologist there and see what my options are. Dr. B says if I decide on radiation, they will probably do it within a week or so. Pretty quick, not a lot of time to prepare...
So yah, I'm scared. This whole thing really sucks, you know? I need a vacation from being me...
:(
3/14/12
Retreat, Again
You may remember other posts I have written about the wonderful retreats made available to breast cancer patients and survivors by Breast Cancer Recovery.
If you don't, you can read them here and here.
These retreats are a fantastic opportunity to connect with other women who are experiencing similar hopes, dreams, fears and treatments, as well as providing physical and emotional healing and pampering.
I just got a reminder from BCR that there are still spaces available for their three remaining retreats for women with metastatic breast cancer. I cannot say enough about these wonderful women, and the folks at the Sundara Spa that provide a fabulously restful and pampering environment for the participants. Please send on this information to any gal you know who might benefit:
If you don't, you can read them here and here.
These retreats are a fantastic opportunity to connect with other women who are experiencing similar hopes, dreams, fears and treatments, as well as providing physical and emotional healing and pampering.
I just got a reminder from BCR that there are still spaces available for their three remaining retreats for women with metastatic breast cancer. I cannot say enough about these wonderful women, and the folks at the Sundara Spa that provide a fabulously restful and pampering environment for the participants. Please send on this information to any gal you know who might benefit:
Breast Cancer Recovery is pleased to announce that there are spaces still available in the three remaining 2012 Infinite Boundaries Retreats for women with metastatic breast cancer. The retreats will be held at Sundara Inn, located in Wisconsin Dells. Please share this with women who might be interested.
SPACE IS LIMITED! REGISTER SOON!
FEE IS $300. SCHOLARSHIPS ARE AVAILABLE!
DATES:
Monday, May 14 – Thursday, May 17
Monday, September 24 – Thursday, September 27
Monday, November 5 – Thursday, November 8
The fee for the four-day, three-night retreat is $300 due to the many generous donors who help to underwrite a large portion of retreat expenses. The retreat fee includes all meals, lodging, program materials and activities. Breast Cancer Recovery offers scholarship opportunities which help to make Infinite Boundaries retreats affordable to more women.
Additional information about this and other Infinite Boundaries retreats can be found at www.bcrecovery.org, by calling 888-821-1140 or by sending an email to info@bcrecovery.org.
Register by phone: 888-821-1140
Register online: www.bcrecovery.org
Questions? info@bcrecovery.org
Ugh, A Hug...
Dr. Bouncy hugged me yesterday. My long-term readers will probably find this to be a bad sign.
They would be right.
So tomorrow I'm going in for a brain scan. I don't expect the news to be good.
But wish me luck anyway, okay?
They would be right.
So tomorrow I'm going in for a brain scan. I don't expect the news to be good.
But wish me luck anyway, okay?
3/11/12
Vote Now, Vote Often
METAvivor needs your vote. Heck, it needs your votes, since you are allowed to vote once every day until March 15th.
METAvivor is an organization that is dedicated to funding research on metastatic breast cancer. Currently most breast cancer funding goes towards 'awareness education', while less than 3% goes towards metastatic disease, which kills 30% of all people who are diagnosed with breast cancer (that means that 30% of the women currently celebrating their 'survivorship' will go on to develop metastatic breast cancer, which currently is both incurable and terminal).
METAvivor has applied for the Pink Well video competition. If it receives the most votes, it will apply 100% of the $50,000 prize towards grants for metastatic breast cancer research.
My cancer has advanced too far to be helped by this research - but your support could help us find a cure in time to save other women that you know and love. Your mom, your daughter, your niece, your sister, your friend, your neighbor. The 30% of the 'survivors' who participated in your last local breast cancer fundraiser who will go on to develop metastatic disease.
Vote today. Vote tomorrow. Vote every day through the 15th. And then, if you can, donate to organizations like METAvivor. Awareness is good, but a cure would be better...
METAvivor is an organization that is dedicated to funding research on metastatic breast cancer. Currently most breast cancer funding goes towards 'awareness education', while less than 3% goes towards metastatic disease, which kills 30% of all people who are diagnosed with breast cancer (that means that 30% of the women currently celebrating their 'survivorship' will go on to develop metastatic breast cancer, which currently is both incurable and terminal).
METAvivor has applied for the Pink Well video competition. If it receives the most votes, it will apply 100% of the $50,000 prize towards grants for metastatic breast cancer research.
My cancer has advanced too far to be helped by this research - but your support could help us find a cure in time to save other women that you know and love. Your mom, your daughter, your niece, your sister, your friend, your neighbor. The 30% of the 'survivors' who participated in your last local breast cancer fundraiser who will go on to develop metastatic disease.
A Cure In Time For Her, Perhaps?
Vote today. Vote tomorrow. Vote every day through the 15th. And then, if you can, donate to organizations like METAvivor. Awareness is good, but a cure would be better...
3/6/12
In The End, This Is What It's All About
We make a big deal - in both positive and extremely negative ways - about the details of our various religions and spiritual beliefs. I never could understand the fuss.
To me, to fight about the differences between my way of communing with the universe and your way of celebrating God's existence is like fighting about the differences between the brass and the string sections of the orchestra. We are each of us one part of the great celestial harmony - each voice simultaneously unique and part of a greater whole, making of the entire something unimaginably, achingly beautiful. The notes change, the harmonies break apart and regroup, but nothing is wasted, nothing disappears forever, nothing ends. The music goes on.
I believe that science reflects, rather than diminishes, this spiritual understanding. Superstring theory, astronomy, biology, physics - all, in one way or another, come down to an understanding of the interconnectedness of everything. All of creation resonates harmoniously; religion, art, music, dance, philosophy, literature - they are all born of our need to express this spiritual and tangible truth.
I find it a great comfort to think of this. I hope that you do, too.
My thanks to Gypsy Maria Lorimer for pointing out this video. As always, it's just one way of looking at one facet of a greater whole - but it's a beautiful facet to contemplate!
To me, to fight about the differences between my way of communing with the universe and your way of celebrating God's existence is like fighting about the differences between the brass and the string sections of the orchestra. We are each of us one part of the great celestial harmony - each voice simultaneously unique and part of a greater whole, making of the entire something unimaginably, achingly beautiful. The notes change, the harmonies break apart and regroup, but nothing is wasted, nothing disappears forever, nothing ends. The music goes on.
I believe that science reflects, rather than diminishes, this spiritual understanding. Superstring theory, astronomy, biology, physics - all, in one way or another, come down to an understanding of the interconnectedness of everything. All of creation resonates harmoniously; religion, art, music, dance, philosophy, literature - they are all born of our need to express this spiritual and tangible truth.
I find it a great comfort to think of this. I hope that you do, too.
My thanks to Gypsy Maria Lorimer for pointing out this video. As always, it's just one way of looking at one facet of a greater whole - but it's a beautiful facet to contemplate!
2/26/12
Drat
Well, I think the latest treatment worked for a few weeks, but it's fairly clear that it was a very short reprieve, indeed. The hip pain has been ratcheting up in the last two weeks, I'm losing appetite and weight fairly rapidly, and today has been very bad health-wise... pain, a feeling of the hip tumor being much more noticeable (larger), and fairly extreme weakness.
The bad symptoms seem to be increasing very quickly, which is scary. I'm grateful to have been able to see my granddaughter born, but I have to admit that I'd like to be around long enough for her to become more of an interacting human being (it's hard to interact with someone who seems determined to stay asleep during our entire time together...), I'd like to get to know her as a person. It seems too much to ask to be here long enough for her to know and remember me, but still...
This last few months have certainly been a roller coaster of ups and downs. I can only hope that this is a temporary dip, and that it is possible that I have a few more ups left in me. I will, of course, keep reporting as we go, but I must say it's been a very discouraging week. Please send all the positive energy, prayers, etc. that you can - I need all the help I can get.
The bad symptoms seem to be increasing very quickly, which is scary. I'm grateful to have been able to see my granddaughter born, but I have to admit that I'd like to be around long enough for her to become more of an interacting human being (it's hard to interact with someone who seems determined to stay asleep during our entire time together...), I'd like to get to know her as a person. It seems too much to ask to be here long enough for her to know and remember me, but still...
This last few months have certainly been a roller coaster of ups and downs. I can only hope that this is a temporary dip, and that it is possible that I have a few more ups left in me. I will, of course, keep reporting as we go, but I must say it's been a very discouraging week. Please send all the positive energy, prayers, etc. that you can - I need all the help I can get.
2/23/12
Gratitude, Thank Goodness
I have things to complain about, I suppose, but I am also incredibly grateful for many blessings. Most recently, of course, I am grateful for my beautiful granddaughter, and for her sweet and loving parents. And I give thanks daily and repeatedly for my supportive family - my parents and sister, my siblings-by-marriage and darling mother-in-law, my cousins and aunt and uncle, all of whom have kept me going when I otherwise would have fallen and given up. And nobody could ask for better friends, both near and far (you know who you are)... I depend on you, and you never let me down.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
2/19/12
And Now For Something Completely Different
I am now deprived of one of my biggest and most effective incentives for moving forward with these awful treatments. However, I can't regret the loss one bit.
I am no longer waiting to meet my granddaughter.
I am no longer waiting to meet my granddaughter.
Lorelei Katherine, otherwise known as 'The Most Beautiful Baby In The World'
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