... that there are no rules. The main purpose of administering toxins into the human body is to kill cells, rapidly dividing cells, to prevent the increase and spread of those invasive rapidly dividing cells.
The second rule of chemotherapy ... everyone reads the labels at least twice, and may have someone else read the label as well. You don't want to get the wrong drug or dosage.
The third rule ... drugs which have been tested and found effective on that type of cancer, may also work on other types (not the traditonal "on book" use). This affects the 'cook book' approach to cancer treatments. If you have "A" then you get "Treatment A and C"
My treatment plan wasn't in the regular 'cook book'
I always have to be an outlier (intraneural synovial sacroma, that was discovered, in an non-male over the age of 20).
Wednesday, February 3, 2016
Dagnamit! More operations??? Seriously
So, midway through 2011, the ulnar nerve in my right arm was resected to remove some big ass tumor. Actually the tumor was about the size of my little finger. Kept the arm, lost functionality in the hand, it occasionally hurts like hell, but, I still have the arm (with some insane scarring).
Dave had hoped we'd make it through 2012 without any trips to the hospital ...
... oops ...
I ran off to Hawaii with my Mom in May and came back the first week of June 2012. The day after I got home, I was having awful abdominal pains, went to the ER and several hours later, I was short an appendix. Of course, Dave was talking to his Mom, who he told I was in the ER, who then called my Mom who was in a panic because I was in the ER ... Have I mentioned how much sedatives can be a good thing. They were all stressing me out (and probably Dave too).
Dave hoped we'd make it through 2013 without any trips to the hospital ...
... oops ...
The morning of July 5th, abdominal pain again (at least this time it wasn't my appendix), with the aid of a CT scan at the ER, it was determined that it appeared to be my gall bladder (like all the disclaimers?). That lovely little organ which helps the human body digest fat. Yeah, right, can you tell there are no cheeseburgers in my immediate future. So, my regular doctor sends me off for another test (which uses scary radiation) which determines that my poor little fat processing organ is not functioning at all. Get scheduled for surgery with the same surgeon who removed my appendix (and no, he didn't offer a frequent patient discount). But, between the time of the diagnosis and procedure, I couldn't eat more than 10 grams of fat a day without feeling sick. Time to really read those food labels because I went on a self-managed ultra low fat diet. Not fun. The upside is I figured out how to make yummy things in a very low fat manner and they still tasted good. A win-win for everyone.
SO did we make it through 2014 without any unplanned trips to the hospital?
Yes! We did!
Dave had hoped we'd make it through 2012 without any trips to the hospital ...
... oops ...
I ran off to Hawaii with my Mom in May and came back the first week of June 2012. The day after I got home, I was having awful abdominal pains, went to the ER and several hours later, I was short an appendix. Of course, Dave was talking to his Mom, who he told I was in the ER, who then called my Mom who was in a panic because I was in the ER ... Have I mentioned how much sedatives can be a good thing. They were all stressing me out (and probably Dave too).
Dave hoped we'd make it through 2013 without any trips to the hospital ...
... oops ...
The morning of July 5th, abdominal pain again (at least this time it wasn't my appendix), with the aid of a CT scan at the ER, it was determined that it appeared to be my gall bladder (like all the disclaimers?). That lovely little organ which helps the human body digest fat. Yeah, right, can you tell there are no cheeseburgers in my immediate future. So, my regular doctor sends me off for another test (which uses scary radiation) which determines that my poor little fat processing organ is not functioning at all. Get scheduled for surgery with the same surgeon who removed my appendix (and no, he didn't offer a frequent patient discount). But, between the time of the diagnosis and procedure, I couldn't eat more than 10 grams of fat a day without feeling sick. Time to really read those food labels because I went on a self-managed ultra low fat diet. Not fun. The upside is I figured out how to make yummy things in a very low fat manner and they still tasted good. A win-win for everyone.
SO did we make it through 2014 without any unplanned trips to the hospital?
Yes! We did!
Life, Liberty and the pursuit of s'mores
Life, Liberty and the pursuit of Cameron or s'mores (both of which really make me happy).
It's been awhile since I've added anything to this home of a blog and to recap ...
I finished Introduction to Epidemiology with a B- (and I really think the professor was generous)
I finished the other health care management class with an A (and I'm very disappointed with the experience).
I certified as a group exercise instructor in a dance fitness format (go ahead scratch your head and ask WTF?)
I teach group exercise one day a week and sub
I got bored with Zumba
I have a son. An adorable, brilliant and charming little boy (some of that really is just me being hopeful), who was born on May 2, 2014, via gestational carrier. A rental womb, which is a really class-less, yet humorous way to describe the circumstances of my son's arrival.
So, way back in March of 2012, I visited a fertility specialist (that darn cancer diagnosis really mucks with ones sense of immortality), to discuss the options for David and I to become parents. (Un)fortunately, I had been out of chemo for about 6 months, so that made the idea of IVF unpalatable, and because of my illness the year before, Adoption didn't sound to positive either. So, in the spirit of going with the option that would have the best probability of us becoming parents we opted to use a gestational carrier (GC) ... little did we really know that the process would take almost two years. Our error (if you want to call it that), was to have our GC be a resident of Utah, which requires all documents to be validated by the family court. Which is actually a good thing since it protects all of the parties involved. 4 lawyers in 3 states, 3 doctors in three states, 1 home inspection by a social worker, psych evals and secrecy (lots and lots of it), we were finally able to be parents (ok, at least one of us is really going to be old when he graduates from high school).
So, why now am I putting this out into the digital world instead of keeping it all inside? Maybe it's to remind me that no matter how little some things are, they can be really big to other people and hopefully ... maybe ... on a good day ... bring a smile when one is really needed.
Actually, there are far more selfish reasons for me to put the whole adventure to print. Someone I know called me an inspiration, and I really have no idea why. Maybe it's because the last few years have been an occasional challenge, and to be able to laugh at the insanity of it all and find the happiness within (btw - a brilliant shoe sale also helps with the happiness).
... to be continued
It's been awhile since I've added anything to this home of a blog and to recap ...
I finished Introduction to Epidemiology with a B- (and I really think the professor was generous)
I finished the other health care management class with an A (and I'm very disappointed with the experience).
I certified as a group exercise instructor in a dance fitness format (go ahead scratch your head and ask WTF?)
I teach group exercise one day a week and sub
I got bored with Zumba
I have a son. An adorable, brilliant and charming little boy (some of that really is just me being hopeful), who was born on May 2, 2014, via gestational carrier. A rental womb, which is a really class-less, yet humorous way to describe the circumstances of my son's arrival.
So, way back in March of 2012, I visited a fertility specialist (that darn cancer diagnosis really mucks with ones sense of immortality), to discuss the options for David and I to become parents. (Un)fortunately, I had been out of chemo for about 6 months, so that made the idea of IVF unpalatable, and because of my illness the year before, Adoption didn't sound to positive either. So, in the spirit of going with the option that would have the best probability of us becoming parents we opted to use a gestational carrier (GC) ... little did we really know that the process would take almost two years. Our error (if you want to call it that), was to have our GC be a resident of Utah, which requires all documents to be validated by the family court. Which is actually a good thing since it protects all of the parties involved. 4 lawyers in 3 states, 3 doctors in three states, 1 home inspection by a social worker, psych evals and secrecy (lots and lots of it), we were finally able to be parents (ok, at least one of us is really going to be old when he graduates from high school).
So, why now am I putting this out into the digital world instead of keeping it all inside? Maybe it's to remind me that no matter how little some things are, they can be really big to other people and hopefully ... maybe ... on a good day ... bring a smile when one is really needed.
Actually, there are far more selfish reasons for me to put the whole adventure to print. Someone I know called me an inspiration, and I really have no idea why. Maybe it's because the last few years have been an occasional challenge, and to be able to laugh at the insanity of it all and find the happiness within (btw - a brilliant shoe sale also helps with the happiness).
... to be continued
Monday, March 5, 2012
so where was I last year?
Last year (almost to the day), I was near finished with my first round of in-patient chemotherapy.
What a boring week that was. Each day went something like:
midnight: blood pressure, blood draw and weigh in
7am: blood pressure check
730am: hospital breakfast (which I got to choose the day before)
10:00am: change out the bag of ringers saline
1130am: lunch
(somewhere in this window was the daily oncologist visit)
4:00pm: bloodpressure check
5:00pm: Dinner (with extra chocolate treats from the nutrition staff -- yummm)
8:00pm: change out drug baqs
10:00pm: change out bag of ringers saline
midnight: it all starts all over again
A couple of things that sucked:
the movie selection (they had a subscription with some movie "channels," one can only watch "The Last Airbender" so many times)
no wifi
there was internet access, but, it was only available through the tv (horrible resolution and viewing angle)
It was so nice to get home.
What a boring week that was. Each day went something like:
midnight: blood pressure, blood draw and weigh in
7am: blood pressure check
730am: hospital breakfast (which I got to choose the day before)
10:00am: change out the bag of ringers saline
1130am: lunch
(somewhere in this window was the daily oncologist visit)
4:00pm: bloodpressure check
5:00pm: Dinner (with extra chocolate treats from the nutrition staff -- yummm)
8:00pm: change out drug baqs
10:00pm: change out bag of ringers saline
midnight: it all starts all over again
A couple of things that sucked:
the movie selection (they had a subscription with some movie "channels," one can only watch "The Last Airbender" so many times)
no wifi
there was internet access, but, it was only available through the tv (horrible resolution and viewing angle)
It was so nice to get home.
Sunday, February 12, 2012
Broken New Years Resolutions
Yep, I did it. Broke the New Years Resolution to avoid hospitals. Did it on Feb 5th, 2012.
Wound up in the Emergency Room for unspecified chest pains.
Wound up in the Emergency Room for unspecified chest pains.
Friday, January 20, 2012
2012 Goals --- going back to school and a story
So far one of the goals for 2012 has been met.
The Spring Semester at UNLV (University Nevada Las Vegas) started on Tuesday, Jan 17th. So, of course I was there (without the bells) for my first college course in nearly 6 years ... Introduction to Epidemiology. Then on Wednesday my second class started Public Policy and Health Care. Does anyone notice a theme here? I suppose since 'acquiring' Cancer a year ago, I have developed a greater interest in the nature of health care in the US. After all, last year was easier on us (financially) than it would (could) be for others because we have awesome Health Insurance. I was able to get really good care (aside from the 'usual' glitches), in both in-patient and out-patient environments. Regular testing and not having to take alot out of pocket or worrying about if we were going to have to pick and choose what the priority was ... then again, that may make us the unusual not the norm.
In Jan 2010, I had my first arm surgery for some nerve damage received several years before (falling off a bike of all things), and my mother said, "it's a good thing you have insurance, what would you do if you didn't have insurance?" I told her, "still have the work done." The condition had gotten to where I had lost functionality in my right hand (clawing and wasting, classic signs of peripheral nerve damage), so it was something that had to be done. She then asked, "How would you pay for it?" I told her then, "Everything is negotiable." Which is the case. If I had been uninsured at the time of the first surgery, I would have gone to the surgeon and asked what it would cost for the procedure if I was paying 'cash.' I imagine, it would have been about 50% less that the insurance would be billed. The insurance companies negotiate rates with their providers, the providers charge a rate (which may vary from person/person or insurer/insurer) and then there's cash/personal guarantee of payment.
So, how does this apply to my adventure last year with synovial sarcoma?
The medical system is insanely convoluted, so I want to learn more about what makes it tick.
The much touted 'death panels' already exist if you don't have good health insurance or the money to pay for the procedures (which is why so many people wind up in bankruptcy from medical expenses)
I was terribly fortunate with the medical insurance provided by my husbands employer (group insurance rules)
The anticipated changes in the health care laws, what are the pros/cons and how much of a difference will they make to the public health arena and the people who need the care.
to be continued ...
The Spring Semester at UNLV (University Nevada Las Vegas) started on Tuesday, Jan 17th. So, of course I was there (without the bells) for my first college course in nearly 6 years ... Introduction to Epidemiology. Then on Wednesday my second class started Public Policy and Health Care. Does anyone notice a theme here? I suppose since 'acquiring' Cancer a year ago, I have developed a greater interest in the nature of health care in the US. After all, last year was easier on us (financially) than it would (could) be for others because we have awesome Health Insurance. I was able to get really good care (aside from the 'usual' glitches), in both in-patient and out-patient environments. Regular testing and not having to take alot out of pocket or worrying about if we were going to have to pick and choose what the priority was ... then again, that may make us the unusual not the norm.
In Jan 2010, I had my first arm surgery for some nerve damage received several years before (falling off a bike of all things), and my mother said, "it's a good thing you have insurance, what would you do if you didn't have insurance?" I told her, "still have the work done." The condition had gotten to where I had lost functionality in my right hand (clawing and wasting, classic signs of peripheral nerve damage), so it was something that had to be done. She then asked, "How would you pay for it?" I told her then, "Everything is negotiable." Which is the case. If I had been uninsured at the time of the first surgery, I would have gone to the surgeon and asked what it would cost for the procedure if I was paying 'cash.' I imagine, it would have been about 50% less that the insurance would be billed. The insurance companies negotiate rates with their providers, the providers charge a rate (which may vary from person/person or insurer/insurer) and then there's cash/personal guarantee of payment.
So, how does this apply to my adventure last year with synovial sarcoma?
The medical system is insanely convoluted, so I want to learn more about what makes it tick.
The much touted 'death panels' already exist if you don't have good health insurance or the money to pay for the procedures (which is why so many people wind up in bankruptcy from medical expenses)
I was terribly fortunate with the medical insurance provided by my husbands employer (group insurance rules)
The anticipated changes in the health care laws, what are the pros/cons and how much of a difference will they make to the public health arena and the people who need the care.
to be continued ...
Friday, January 13, 2012
Good tidings for all and the strangest reasons to be happy
When I look back on 2011, there are a number of things that sound trivial, but, really become important in the broader scope.
I was diagnosed with cancer exactly 1 year ago (alright, I was told it was cancer on Jan 14, 2011), since then life has been a little upside down, sideways and inside out.
The things I decided not to take for granted:
My husband. He absolutely hates hospitals but he came to visit me every day of my confinement (14 days over 1.5 months), and was there the whole time for my surgery. He also chose to sleep on the couch for awhile to make sure I got what he calls "good sleep"
My family. They were all insanely supportive and helpful of anything Dave or I would need. My mother for staying to take care of me (and not giving us food poisoning). Dave's Mom for driving me around to appointments and not spilling the beans to my mother.
My/Our Friends. Lots of kind thoughts and no one made me feel funny when I was bald.
A good doctor. Everyone needs a good one to help you through the maze that is the medical system.
Nurses
The strangest reason to be happy ... The aches and pains I have in my right hand. Why? I had been told for months that I could lose the arm, depending on the ease/difficulty on removing the tumor and if it were to spread. So, to have the aches and pains, isn't such a bad thing.
I was diagnosed with cancer exactly 1 year ago (alright, I was told it was cancer on Jan 14, 2011), since then life has been a little upside down, sideways and inside out.
The things I decided not to take for granted:
My husband. He absolutely hates hospitals but he came to visit me every day of my confinement (14 days over 1.5 months), and was there the whole time for my surgery. He also chose to sleep on the couch for awhile to make sure I got what he calls "good sleep"
My family. They were all insanely supportive and helpful of anything Dave or I would need. My mother for staying to take care of me (and not giving us food poisoning). Dave's Mom for driving me around to appointments and not spilling the beans to my mother.
My/Our Friends. Lots of kind thoughts and no one made me feel funny when I was bald.
A good doctor. Everyone needs a good one to help you through the maze that is the medical system.
Nurses
The strangest reason to be happy ... The aches and pains I have in my right hand. Why? I had been told for months that I could lose the arm, depending on the ease/difficulty on removing the tumor and if it were to spread. So, to have the aches and pains, isn't such a bad thing.
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