...well, not really - I just wanted to get your attention :)
On one of my trips to Duke, my doctor told me that PBS was filming him and his patients for one of their documentaries, and he asked if I would participate. Sure, I haven't showered today, nor do I have any makeup on, but why not?
There were two guys doing this documentary, Michael Bernhagen and Terry Kaldhusdal, with an intern. It's part two of a series called Consider the Conversation. Part One - A Documentary on a Taboo Subject was about preparation for end-of-life care. Both Michael and Terry had experiences with family members where no one talked to them about hospice care or other alternatives. This sparked them to examine this topic further. I encourage you to read more about it at http://www.considertheconversation.org. It's been aired 428 times across 165 PBS stations in 31 states. It has inspired systematic change in the Wisconsin health care system and won 11 major awards.
Chapter 2 is called A Documentary about Unintended Consequences. An excerpt from the website says it "explores the impact of American medicine's success on the patient/doctor relationship and illuminates the important role communication plays in helping parties navigate the murky waters of severe chronic disease". They interviewed me about how I came to decide to get treatment at Duke, in particular with my kick-ass doctor, Dr Zafar (and his amazing Nurse Practitioner Leigh Howard). They asked me some hard questions, like how do I imagine a conversation with my doctor if he had bad news about my prognosis. I've never thought of that because I don't see that as a likely scenario, so why play the "What If" game with myself? Next question, please...
We also discussed whether or not it's a failure for a doctor to not be able to cure a patient with a chronic disease like cancer. That was a powerful question, because it leads to so many other topics, and that's when I really understood what this documentary was about. What is the relationship between a doctor and patient? How does a doctor communicate with a patient that has a potentially uncureable disease? How do you treat someone like that, both from a communication and medical perspective? How do you prepare them for "the end"? And how do costs of care impact these choices and decisions?
They also asked how I would like to leave this world, whenever that ends up happening. I said that I want to be surrounded by my friends and family, maybe at the beach. Afterwards, as I read more about what the documentary is about, I realized what that last question was really asking. With the advancements in medicine, would I want to be in a hospital, hooked up to cutting edge technology, with access to doctors and treatment that could extend my life? That never even dawned on me...nope, I want to be somewhere peaceful and not at a hospital.
As I write this now I realize that I'm still not very comfortable thinking about end-of-life topics because I'm not ready to leave this world yet. I was recently reminded once again about how rare I am. I asked my nurse if I should get another colonoscopy, because it's been a year since my last one which discovered my tumor. She said she doesn't typically have that conversation with patients that have metastatic cancer, because they usually aren't cured. But yes, I should have one after I finish chemo (only one to go!) This is a reminded of how lucky I've been, and I just keep wondering if my luck is going to run out.
I need to get back to living a healthy lifestyle. I've gained over 25 pounds since this began a year ago. I know I can lose the weight, because I did it earlier that same year. I just need to be able to get back into a routine of going to the gym, swimming, cooking, etc. And I can't seem to do that when I'm going to Duke every two weeks. So I'll be patient for just a little longer...
I'll keep everyone updated about my CT scan at the end of September (not scheduled yet), so that will likely be the next blog. Life is good :)
TTYL
Sarah xoxo
Saturday, August 24, 2013
Wow, I'm a slacker
It's been so long since my last update - I'm such a slacker! Here's what's been going on...
Session #2 was rough. I was nauseated the whole ride home from Duke. The anti-nausea meds gave me a headache for the whole two weeks. The tingling in my hands and feet (neuropathy) lasted the whole two weeks, and so did the cold aversion. The cold aversion sucked the most, because I felt like I had to avoid food. I couldn't eat fresh fruits or veggies, which was what my body was craving to counteract all the toxins of the chemo. I avoided hydrating because I needed to warm up my water, and it tastes different when it's warm. It was the first time that I was absolutely miserable :(
So on my next visit to Duke, as I was telling my Nurse Practitioner about my side effects, she lovingly berated me for not contacting her earlier about what I'd gone through. Note to self, if I'm unhappy, I should tell my doctor immediately, and not wait for my next visit. We decided to stop treatment with the Oxaliplatin and just continue with the 5FU with the hopes that my side effects will decrease tremendously. And...they did! #3 wasn't bad. I had some nausea on Friday night (I get hooked up to chemo on Thursday) and on Saturday, which made me take a Zofran, and I got a headache, but by Sunday I was feeling great!
But then on Sunday, I noticed my feet starting to burn like they did last December. I started getting nervous because I was going to NYC the next weekend to visit my friend Kristin. Kristin has a gig with Deloitte Consulting in NYC and they put her up in corporate housing in Battery Park. Life is rough, huh? And how could I get around the city if I couldn't walk??? So I laid off my feet as much as possible, and the trip was still good, but less active. Just when I start to feel good, something else hits me that gets in the way of returning to normal. But it's just short term - gotta keep reminding myself of that.
The feet thing started to go away eventually - probably just detox from the Oxaliplatin And since the side effects got better, we decided to discontinue the Oxaliplatin completely, forever! That made me so happy as I didn't have to worry each time I was going to Duke about whether we would restart that.
So sitting here hooked up to chemo #7 - one more to go!!! Each treatment has gotten better in terms of side effects. I don't even take the nausea meds anymore. I have really, really mild nausea, but it's better than the headache from the Zofran, and the fatigue isn't bad at all. And the nurse comes in three hours to disconnect me from my pump. By tomorrow, I should feel normal again!
I've got one more treatment on 9/5, then I'm going to Santa Fe on 9/14-9/21 for a long overdue vacation. I have taken time off work throughout all of this, but the last time I didn't work for a week was my surgery in March, and that's not a vacation. The last real time off of work was Christmas (Paris was only three days off of work). Like I said, LONG overdue. I'm going with some family and we're going to check out this awesome spa in Ojo Caliente. It's got hot springs and mud baths, and I've never had a mud bath before! I'm hoping it will help detox my body from the chemo :)
Then I'll have another CT scan to ensure that cancer hasn't found a new home, which it hasn't, I'm sure :) I'll have scans every 3-6 months for the first two years, and then annually. I'm hoping to get my chest port removed after the first scan, but my doctors encourage me to wait until after my second scan. I want to get this thing out so badly, I'm not sure I can wait another three months. I just want to get back to my normal life. I want to go to the gym again, and get my ass handed to me by my trainer, and sweat, and be sore a little, and get back on a treadmill. I want to try to do a 5K next spring at Duke for colon cancer. Oh, and I NEED to start some yoga! I miss stretching, and I don't like doing it with this chest port. But I still have time to decide all of that...about a month actually. Oh and by the way, I'm 5 months cancer free :)
love to all!
Sarah
Session #2 was rough. I was nauseated the whole ride home from Duke. The anti-nausea meds gave me a headache for the whole two weeks. The tingling in my hands and feet (neuropathy) lasted the whole two weeks, and so did the cold aversion. The cold aversion sucked the most, because I felt like I had to avoid food. I couldn't eat fresh fruits or veggies, which was what my body was craving to counteract all the toxins of the chemo. I avoided hydrating because I needed to warm up my water, and it tastes different when it's warm. It was the first time that I was absolutely miserable :(
So on my next visit to Duke, as I was telling my Nurse Practitioner about my side effects, she lovingly berated me for not contacting her earlier about what I'd gone through. Note to self, if I'm unhappy, I should tell my doctor immediately, and not wait for my next visit. We decided to stop treatment with the Oxaliplatin and just continue with the 5FU with the hopes that my side effects will decrease tremendously. And...they did! #3 wasn't bad. I had some nausea on Friday night (I get hooked up to chemo on Thursday) and on Saturday, which made me take a Zofran, and I got a headache, but by Sunday I was feeling great!
But then on Sunday, I noticed my feet starting to burn like they did last December. I started getting nervous because I was going to NYC the next weekend to visit my friend Kristin. Kristin has a gig with Deloitte Consulting in NYC and they put her up in corporate housing in Battery Park. Life is rough, huh? And how could I get around the city if I couldn't walk??? So I laid off my feet as much as possible, and the trip was still good, but less active. Just when I start to feel good, something else hits me that gets in the way of returning to normal. But it's just short term - gotta keep reminding myself of that.
The feet thing started to go away eventually - probably just detox from the Oxaliplatin And since the side effects got better, we decided to discontinue the Oxaliplatin completely, forever! That made me so happy as I didn't have to worry each time I was going to Duke about whether we would restart that.
So sitting here hooked up to chemo #7 - one more to go!!! Each treatment has gotten better in terms of side effects. I don't even take the nausea meds anymore. I have really, really mild nausea, but it's better than the headache from the Zofran, and the fatigue isn't bad at all. And the nurse comes in three hours to disconnect me from my pump. By tomorrow, I should feel normal again!
I've got one more treatment on 9/5, then I'm going to Santa Fe on 9/14-9/21 for a long overdue vacation. I have taken time off work throughout all of this, but the last time I didn't work for a week was my surgery in March, and that's not a vacation. The last real time off of work was Christmas (Paris was only three days off of work). Like I said, LONG overdue. I'm going with some family and we're going to check out this awesome spa in Ojo Caliente. It's got hot springs and mud baths, and I've never had a mud bath before! I'm hoping it will help detox my body from the chemo :)
Then I'll have another CT scan to ensure that cancer hasn't found a new home, which it hasn't, I'm sure :) I'll have scans every 3-6 months for the first two years, and then annually. I'm hoping to get my chest port removed after the first scan, but my doctors encourage me to wait until after my second scan. I want to get this thing out so badly, I'm not sure I can wait another three months. I just want to get back to my normal life. I want to go to the gym again, and get my ass handed to me by my trainer, and sweat, and be sore a little, and get back on a treadmill. I want to try to do a 5K next spring at Duke for colon cancer. Oh, and I NEED to start some yoga! I miss stretching, and I don't like doing it with this chest port. But I still have time to decide all of that...about a month actually. Oh and by the way, I'm 5 months cancer free :)
love to all!
Sarah
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