Each time they start you on a new cancer drug they give you a sheet of paper with all the possible side effects. It's all very nice and neat, 3 little columns, respectfully tittled More Common, Less Common and Very Rare. Each one then has a couple of tidy bullet points outlining what's going to happen to you when they start injecting that specific drug into your vein. Some of the more fun side effects include fingernail or toe nail changes, muscle pain, fluid retention, sores in the mouth, nausea, diarrhea and fatigue.
But really the main side effect I feel from cancer is EXHAUSTION. It's so frustrating that even the littlest things make you feel like you need to take an hour nap. Or you can barley even enjoy a shower because you're thinking about how fast you can get the shampoo out of your hair so you can go lay down again. And then the sun finally comes out in MN and you have to spend the whole weekend inside on a couch in front of a fan.
The paper work that goes along with cancer is also exhausting. This is one area of the world that should def consider moving to a "paper-less" approach. You get bills, notifications, letters, explanations of benefits and MORE. And they're all written in some foreign language that no one can understand anyway. I think that if anyone receives a cancer diagnosis, they should also get a statement (via email) explaining everything you're in for... and a new pillow for all the naps that one will most definitely need to take!
Monday, June 15, 2009
Tuesday, June 9, 2009
Starbucks Light of My Life
best moment of the day yesterday...
I was grabbing my drink of choice at the moment, a grande, soy, no water, x-hot, Tazo chai latte at Starbucks when the girl looked right at me and said "when did your hair start growing back?"
I was like WOW! Literally, I don't know if I could have been more stunned. This girl standing in front of me is not only serving me my favorite drink but also she "gets it". It was just like one of the best, most honest and sincere questions anyone has asked me though out this whole process.
I told her that it started coming back in March and she said she had been through it before too. I said, it's kinda nice now because it's gotten to the point where people think that this is a style by choice and she just gave me a knowing smile. And that was the end of our interaction but it was one that I won't forget for a long long time.
I was grabbing my drink of choice at the moment, a grande, soy, no water, x-hot, Tazo chai latte at Starbucks when the girl looked right at me and said "when did your hair start growing back?"
I was like WOW! Literally, I don't know if I could have been more stunned. This girl standing in front of me is not only serving me my favorite drink but also she "gets it". It was just like one of the best, most honest and sincere questions anyone has asked me though out this whole process.
I told her that it started coming back in March and she said she had been through it before too. I said, it's kinda nice now because it's gotten to the point where people think that this is a style by choice and she just gave me a knowing smile. And that was the end of our interaction but it was one that I won't forget for a long long time.
Monday, June 8, 2009
Interpretation of The Discovery & The Road Map ahead
I'm totally not sick of talking about the cancer stuff at all! And I never mind answering any and all questions, especially when they're coming from people I adore!
SO yes on Tuesday when I went in they found at least 5 more tumors through out my lower abdomen. Two of the ones that they are most concerned about are the ones wrapped around my colon. One is wrapped around on the right side which is your ascending colon and the other on the left side wrapped around my descending colon. (Who remembered that you had 3 different parts of your large intestine, not this girl! 10th grad human anatomy and physiology was a LONG time ago). There is also a small one on the outside of my liver pressing up into my diaphragm, which makes me get the hic ups all the time, also not so fun. And the other two are just around I guess.
We got to look at the CT scan but it was a lot to take in. I also had been on A TON of drugs for at least 48 hours for the pain which complicated the situation even more. But Dr. Bice, not to be confused with Dr. Bryce, was awesome enough to sit with us for almost an hour showing us all the different scans so we could see where and when the tumors had started growing. The two on the colon are each about 6x6x5 give or take a cm and the other ones are smaller in size. So they aren't anywhere near the size they were last time, but they aren't like tiny & insignificant either (bummer).
So Tuesday and Wed were spent discussing whether or not they were going to do surgery. And surgery wouldn't have been to cure the cancer at all. It would only be to remove tumors that were blocking the colon. This really wouldn’t have been an ideal option because if they would have had to do that then they would have also had to start a colostomy bag which may have ended up there permanently. (Bad for fashion and for any attempt at a sex life!) I mean as human we all know each other poops but it’s not like we want to see it… So they did a colonoscopy on Thursday am and discovered that everything was all clear! And let me tell you... I have no problem waiting another 25 years before I have one of those done again. WHEW!
Then they would have started chemo right away on Friday morning but I spiked a 103 fever on Thursday afternoon/evening so they wanted to wait. Not good to start compromising your immune system when it's already in a weakened state. So I will have to do chemo again but the regime and drugs are going to be different. They aren't more aggressive or stronger necessarily, just different, because everyone's body reacts so differently to chemo. And they really haven't treated enough people with Monophasic Synovial Cell Sarcoma to really know what works the best for the majority of people. And I guess even if they did, so maybe my body still wouldn't have liked that option so we may have had to go though the same thing anyway.
So here is how chemo will work this time around. Each cycle is 21 days long and I'll have to go through 6 cycles. I'll get chemo on day 1 of the cycle and day 8 of the cycle. Then be off for the next 13 days and the whole thing will start all over again. The two drugs I get this time are Taxotere and Gemzear. I'll just get one of the drugs on day 1 and then both of them on day 2. Supposedly though this regime will be a little less insane on my body... It only takes each drug about 45-60 mins to drip in, so at the most chemo might last a couple of hours. Whereas last time the chemo process could take from 6-8 hours! Yikes! And there is only a slight chance that I'll loose my hair again vs. the 100% guarantee that I would the last time. And there is supposed to be less nausea but a lot more fatigue. So I guess we'll just have to wait and see....
SO yes on Tuesday when I went in they found at least 5 more tumors through out my lower abdomen. Two of the ones that they are most concerned about are the ones wrapped around my colon. One is wrapped around on the right side which is your ascending colon and the other on the left side wrapped around my descending colon. (Who remembered that you had 3 different parts of your large intestine, not this girl! 10th grad human anatomy and physiology was a LONG time ago). There is also a small one on the outside of my liver pressing up into my diaphragm, which makes me get the hic ups all the time, also not so fun. And the other two are just around I guess.
We got to look at the CT scan but it was a lot to take in. I also had been on A TON of drugs for at least 48 hours for the pain which complicated the situation even more. But Dr. Bice, not to be confused with Dr. Bryce, was awesome enough to sit with us for almost an hour showing us all the different scans so we could see where and when the tumors had started growing. The two on the colon are each about 6x6x5 give or take a cm and the other ones are smaller in size. So they aren't anywhere near the size they were last time, but they aren't like tiny & insignificant either (bummer).
So Tuesday and Wed were spent discussing whether or not they were going to do surgery. And surgery wouldn't have been to cure the cancer at all. It would only be to remove tumors that were blocking the colon. This really wouldn’t have been an ideal option because if they would have had to do that then they would have also had to start a colostomy bag which may have ended up there permanently. (Bad for fashion and for any attempt at a sex life!) I mean as human we all know each other poops but it’s not like we want to see it… So they did a colonoscopy on Thursday am and discovered that everything was all clear! And let me tell you... I have no problem waiting another 25 years before I have one of those done again. WHEW!
Then they would have started chemo right away on Friday morning but I spiked a 103 fever on Thursday afternoon/evening so they wanted to wait. Not good to start compromising your immune system when it's already in a weakened state. So I will have to do chemo again but the regime and drugs are going to be different. They aren't more aggressive or stronger necessarily, just different, because everyone's body reacts so differently to chemo. And they really haven't treated enough people with Monophasic Synovial Cell Sarcoma to really know what works the best for the majority of people. And I guess even if they did, so maybe my body still wouldn't have liked that option so we may have had to go though the same thing anyway.
So here is how chemo will work this time around. Each cycle is 21 days long and I'll have to go through 6 cycles. I'll get chemo on day 1 of the cycle and day 8 of the cycle. Then be off for the next 13 days and the whole thing will start all over again. The two drugs I get this time are Taxotere and Gemzear. I'll just get one of the drugs on day 1 and then both of them on day 2. Supposedly though this regime will be a little less insane on my body... It only takes each drug about 45-60 mins to drip in, so at the most chemo might last a couple of hours. Whereas last time the chemo process could take from 6-8 hours! Yikes! And there is only a slight chance that I'll loose my hair again vs. the 100% guarantee that I would the last time. And there is supposed to be less nausea but a lot more fatigue. So I guess we'll just have to wait and see....
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