This is a bummer post but it's been a pretty bummer week ~ one of our good friends passed away on Sunday at the age of 36 after a 2 year battle with pancreatic cancer. He was married this past October. WTF.
I'm not sure if it's because I had cancer so I'm sensitive to it, or because I'm getting older, but I feel like everyone I know has cancer. Or they are at least touched by it.
Me
Uncle Bruce
Papa*
Fraelicks*
Monie's Mom
Tanya
Sue's Mom*
Brenda's sister
Silvie's Mom*
Melissa's Dad
Melissa's Aunt
T's good friend
Mr. Z
Kate
Okay so this is the short list of all the people I am connected to that I could name in 1 minute. Gross.
Friday, March 14, 2008
Thursday, March 6, 2008
Good results and birds singing...
Living in New England (and Michigan) you know that no signs of spring can be trusted - but - today I could hear birds outside of my office and it was such a sweet sound. It's also been sunny and good lunch time walking weather this week. Hey, I'll take what I can get.
Which was also good pathology results from my excision last week! Wahoo! They took a lesion off my head (above my right ear) and ten stitches later I'm good as new. We never thought it was going to be Melanoma again but it's always nice to know for certain.
My favorite things for today are as follows:
Which was also good pathology results from my excision last week! Wahoo! They took a lesion off my head (above my right ear) and ten stitches later I'm good as new. We never thought it was going to be Melanoma again but it's always nice to know for certain.
My favorite things for today are as follows:
http://www.pandora.com/ - online music where you simply put in an artist, song or genre and they create a music station for you. Today I typed in Old Crow Medicine Show and have had a fantastic stream of bluegrass ever since.
Trader Joe's cocoa almonds
Planet Earth on DVD - I cannot stop watching it!
Thursday, February 28, 2008
Would it be silly to fly back to MI for a check-up?
Sometimes I'm just tired. Being a patient is a lot of work. Sometimes I think if I ever hear the word "advocate" again I'll just scream. I know that when it comes right down to it the only person responsible for my health and for my life is me but that's a pretty big responsibility and it would be nice to share it with someone.
Doctor anyone?
Since moving back to MA from MI 5 months ago it has been an ordeal to get set-up with a good team of doctors here and I'm beyond frustrated. This month alone I was seen at both Brigham and Women's and MGH and I was unimpressed to say the least. I felt like I wasn't sick enough to get good care. I felt like because I wasn't dying that I received less than adequate attention. I'm in the service business and let me tell you - the service I've been getting has SUCKED.
Moving back to Boston I had expectation (or disillusions) that I would be in a better place and, frankly, when you're a cancer patient feeling reassured is the best feeling in the world. No one will ever tell you again that you're going to be "fine" - they can't - you may not be and they have no idea whether or not you will. The feel good part come with working with doctors you trust and working with doctors who you feel are invested in your case, in your health, in your life. It's still a leap of faith but it's all we've got.
I guess I just have to keep looking. Keep advocating for myself.
Doctor anyone?
Since moving back to MA from MI 5 months ago it has been an ordeal to get set-up with a good team of doctors here and I'm beyond frustrated. This month alone I was seen at both Brigham and Women's and MGH and I was unimpressed to say the least. I felt like I wasn't sick enough to get good care. I felt like because I wasn't dying that I received less than adequate attention. I'm in the service business and let me tell you - the service I've been getting has SUCKED.
Moving back to Boston I had expectation (or disillusions) that I would be in a better place and, frankly, when you're a cancer patient feeling reassured is the best feeling in the world. No one will ever tell you again that you're going to be "fine" - they can't - you may not be and they have no idea whether or not you will. The feel good part come with working with doctors you trust and working with doctors who you feel are invested in your case, in your health, in your life. It's still a leap of faith but it's all we've got.
I guess I just have to keep looking. Keep advocating for myself.
Wednesday, November 14, 2007
Support
So, last night I attended my first ever support group. It's taken two years to get me there but I feel like now, more than ever, I need to have a space where it's okay to have cancer. Where I can talk about my daily fears and the people there "get it." They have this stupid cancer too and they feel my pain acutely. The funny thing was it started like you would expect an AA meeting too - you all tell your stories and start to ask each other questions. The truth is that the face of cancer is as different as we all are. I guess there's value in hearing other people's struggles and successes. It brings a sense of reality to the statistics I read online. There was a woman there who had interferon treatment and it was very successful for her - that makes me hopeful. I have this fear that when it gets to that point you're done already. Morbid, yes, but it's how I feel.
They sort of all looked at me like - wow, we're sorry. You have the worst of this. Which is ironic because they all had positive lymph nodes and extensive treatment. They couldn't believe I never had anything but an excision. They were sympathetic to the fact that I had a reocurrence just two years from the month I had my first Melanoma and, well, I assume it's because of my age that they teared up when I started talking about the things that scare me.
I think it's a luxury for my husband and family to not think about Melanoma every day. I am jealous that they don't think they got a bum deal marrying me or that they don't think about me dying when they think about me being a Mom someday. I can't help it. It's my cancer and I live it every day. It's nice to be in the company of people who can understand that. It's nice to be with people who understand that even though I don't have a Melanoma today I still have Melanoma every day for the rest of my life.
Beverly Hospital
Beverly, MA
The Garden Conference Room
Second Tuesday of the month, 6pm
They sort of all looked at me like - wow, we're sorry. You have the worst of this. Which is ironic because they all had positive lymph nodes and extensive treatment. They couldn't believe I never had anything but an excision. They were sympathetic to the fact that I had a reocurrence just two years from the month I had my first Melanoma and, well, I assume it's because of my age that they teared up when I started talking about the things that scare me.
I think it's a luxury for my husband and family to not think about Melanoma every day. I am jealous that they don't think they got a bum deal marrying me or that they don't think about me dying when they think about me being a Mom someday. I can't help it. It's my cancer and I live it every day. It's nice to be in the company of people who can understand that. It's nice to be with people who understand that even though I don't have a Melanoma today I still have Melanoma every day for the rest of my life.
Beverly Hospital
Beverly, MA
The Garden Conference Room
Second Tuesday of the month, 6pm
Wednesday, November 7, 2007
Stupid Cancer
April 2005 - Visit dermatologist and request biopsy of funny spot on my arm that's been there a while. It's skin colored and looks like a bug bit that never healed. Assured it's prob. just a white blood cell cyst.
A week later I get the call. it's inconclusive but we think you may have Melanoma. Hm. How can you be unsure whether or not I have the most deadly form of skin cancer? And you just want to cut it out? Yeah, that's not good enough.
After 3 of the longest days of my life, 200 phone calls and lots of pushing the Melanoma clinic at the U of M Cancer Center will review my slides and do their own pathology.
48 hours they call back. Can you come in tomorrow? I have Melanoma.
......this is a long story and it's going to take a while to get all in here....
A week later I get the call. it's inconclusive but we think you may have Melanoma. Hm. How can you be unsure whether or not I have the most deadly form of skin cancer? And you just want to cut it out? Yeah, that's not good enough.
After 3 of the longest days of my life, 200 phone calls and lots of pushing the Melanoma clinic at the U of M Cancer Center will review my slides and do their own pathology.
48 hours they call back. Can you come in tomorrow? I have Melanoma.
......this is a long story and it's going to take a while to get all in here....
Don't they always say, "never blame the victims?"
What does one call this? An ad or is it a public service announcement? And is there any chance that the girl in this picture is real....I find it hard to imagine. Your sister dies of skin cancer and you think this is the way to shock people? The way to scare them into understanding more about the dangers of the sun or the importance of early detection?
I tried to ignore this the first few times I saw it. Frankly, I'm not used to blaming cancer patients for their deaths.
60,000 people will be diagnosed with skin cancer this year and somewhere around 8,000 will die. I don't blame any of them.
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