Your calendar is full of medical appointments and you never get to see your friends.
I used to work with a woman who told me that I was unhealthier than an entire floor at the local hospital combined and she didn't even know about my cancers .
But you really know when you are unhealthy when you are in a room full of people with cancer, mostly stage IV, and they consider you unhealthy. That is what happened to me yesterday.
I'm just trying to keep my sense of humor through all this.
Friday, December 16, 2016
Thursday, December 15, 2016
Living Without Cancer
I have had further thoughts on my post from the other day on Not Talking About Cancer and then more thoughts. As I wrote about enjoying not talking about cancer, it really made me think. What if you didn't even have to consider talking about cancer or not talking about cancer? Because you had never had cancer?
I think this is the part that I am stuck on and really struggle with at times. I have never been an adult with out cancer. This is very difficult for me. I went from being a fun loving, college freshman to a cancer person. (This means if you got to know me after August 1981 you never knew the pre-cancer me.)
If you have had cancer, can you think about your life before and after cancer (and none of that 'new normal' bullshit) how have you changed? How has your cancer diagnosis changed you? What is different about your life?
I couldn't tell you what is different about my life, before and after cancer. Whatever equilibrium I reached after my first cancer diagnosis, it was shattered by my second one. I do know that having cancer once before, gave me some additional experience for my second diagnosis, but even then I wasn't prepared.
No matter what I think you are never really prepared for life as a patient instead of life as a person. My big struggle is to learn to cope with this in life. Perhaps this is why I have therapy?
I think this is the part that I am stuck on and really struggle with at times. I have never been an adult with out cancer. This is very difficult for me. I went from being a fun loving, college freshman to a cancer person. (This means if you got to know me after August 1981 you never knew the pre-cancer me.)
If you have had cancer, can you think about your life before and after cancer (and none of that 'new normal' bullshit) how have you changed? How has your cancer diagnosis changed you? What is different about your life?
I couldn't tell you what is different about my life, before and after cancer. Whatever equilibrium I reached after my first cancer diagnosis, it was shattered by my second one. I do know that having cancer once before, gave me some additional experience for my second diagnosis, but even then I wasn't prepared.
No matter what I think you are never really prepared for life as a patient instead of life as a person. My big struggle is to learn to cope with this in life. Perhaps this is why I have therapy?
Wednesday, December 14, 2016
Making The Change
Okay, I am going to do it. I have been pondering changing my pain management doctor and I have decided today (I am finally going to remember to) make the call. While I personally like my old pain management doctor and think he is a decent guy, I question the care I have been receiving.
I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.
After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.
He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.
Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.
I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.
I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.
After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.
He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.
Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.
I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.
Tuesday, December 13, 2016
Talking About Cancer, Or Not
I have a lot of friends these days who have had cancer. And then I have friends who have not had cancer but sometimes we still talk about cancer or my health. But then I have friends who do not have cancer or any big ailments and don't really know about the disasters of my health so we talk about other things. Like life.
Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.
I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.
We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.
Further proof there is life outside of cancer crap (and if its cancer, its crap).
It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.
Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.
I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.
We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.
Further proof there is life outside of cancer crap (and if its cancer, its crap).
It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.
Monday, December 12, 2016
Another Anniversary
I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.
We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).
Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.
Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.
It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.
I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.
Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...
In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.
This is an anniversary to celebrate - when I first learned about online patient support.
We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).
Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.
Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.
It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.
I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.
Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...
In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.
This is an anniversary to celebrate - when I first learned about online patient support.
Saturday, December 10, 2016
Vanessa Bayer
I can tell you I am not Vanessa Bayer's biggest fan, because I honestly do not stay up until midnight to watch the show (waaaayyyy past my bedtime). But I am suddenly a hug fan of her openness regarding her leukemia diagnosis.
"When Vanessa Bayer was just freshman in high school, she was diagnosed with leukemia. While the news was a shock for her and her family, Bayer says her cancer battle ultimately led her to a career in comedy.
“I wasn’t really that scared,” Bayer says in the latest issue of PEOPLE. “My dad is a really funny guy, and we would make jokes about my leukemia. When my friends would come over we would joke about it too. It’s sort of messed up out of context, but it put everybody at ease. Being sick is the reason I went into comedy.”"
I was getting my hair cut this week and had a chance to catch up on the latest magazines, including People.
"When Vanessa Bayer was just freshman in high school, she was diagnosed with leukemia. While the news was a shock for her and her family, Bayer says her cancer battle ultimately led her to a career in comedy.
“I wasn’t really that scared,” Bayer says in the latest issue of PEOPLE. “My dad is a really funny guy, and we would make jokes about my leukemia. When my friends would come over we would joke about it too. It’s sort of messed up out of context, but it put everybody at ease. Being sick is the reason I went into comedy.”"
She went from being a Make-A-Wish kid to a career in comedy and she's still here.
Also, I really want to say that I am so happy to hear about another person who had cancer while young and is being very open about it. I think that the world is a better place if people do not keep their illnesses quiet. There is nothing wrong with talking about your medical ailments. And you probably are a lot healthier if you do talk about your medical issues.
But anyway, I am now one of her biggest fans.
Friday, December 9, 2016
I Am Aggravated
My body is not cooperating. It keeps on bringing areas to my attention that are not cooperative, i.e., causing pain or other discomfort. I am not happy about this. I am already in PT for one area of the body that has expanded to a second area. I am going back to the knee doctor on Monday to talk about my formerly 'good' knee which is causing way too many issues. My 'bad' knee isn't going to be a good substitute for it.
Also, my fatigue levels are not doing me any favors. I was so tired this afternoon that I didn't put away the groceries - except for the most perishable - and left them for my husband so I could go lie down.
This does not make me happy. The roller coaster of cancer is bad enough, actually it probably the worst. But the fatigue and pain roller coaster isn't much better. I am not coping well. I am whining.
And it snowed twice this week and we are due for more snow Monday and Wednesday of next week. This makes me less happy and more aggravated. Its time for my body to suck it up and get back in lie.
Also, my fatigue levels are not doing me any favors. I was so tired this afternoon that I didn't put away the groceries - except for the most perishable - and left them for my husband so I could go lie down.
This does not make me happy. The roller coaster of cancer is bad enough, actually it probably the worst. But the fatigue and pain roller coaster isn't much better. I am not coping well. I am whining.
And it snowed twice this week and we are due for more snow Monday and Wednesday of next week. This makes me less happy and more aggravated. Its time for my body to suck it up and get back in lie.
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