When I was first diagnosed, almost a year ago, I was reminded of a gal in my old ward/neighborhood, that had MBC. I knew her a little bit, and thought the world of her, but didn't know her really well.
However, in my need for answers, hope and needing some reassurance, I called her, or maybe she called me. She was so good at listening and helped me realize that it's possible to live WITH cancer.
Well, the year has gone on and things have changed with my cancer multiple times. My hopes and fears have been all over the place.
After my last scans, I was back in an emotional hole. Feeling lack of hope, fear of my future or lack thereof, mad at my body and frustrated with my stupid cancer that is more aggressive and complicated than I want/thought it would be.
So on Monday, my friend texted and came over for a visit. She brought treats and gifts etc. but most importantly, she brought hope. I don't think she even knows how much she helped me.
She has had MBC for 11 years! and most incredibly, she never had clear scans until last year! So she has been living and working and doing WITH cancer. It wasn't until just a year ago that she got her first clear scan!
She has had several surgeries over the years to remove tumors and at the beginning she had a double mastectomy and hysterectomy.
I know she told me this a year ago, but I hear so many stories of people's journeys and my brain is in such a fog that I forget who goes with which story.
Anyway, I guess in the whole dream I have of getting to the point of no evidence of disease, I get too focused on it. Her visit helped me realize that even if I don't get to a point of NED, I can still LIVE. I can still survive.
I started thinking about how my liver tumor IS shrinking, my bone lesions aren't going to kill me.....as long as they stay in the bones. even the cancer in my breast isn't going to kill me......at least not now. It's the cancer that spreads to my organs, etc. that I need to be most worried about, and right now it's okay. There are treatments for my lesions that aren't responding to chemo and I can be hopeful.
So I am. I'm focusing on the positive. Feeling more brave to fight and that is good for today.
Thursday, January 23, 2020
Tuesday, January 14, 2020
Hair today gone tomorrow
It's been awhile since I've updated. I just haven't wanted to.
I made it through Christmas and mom's 1 year death anniversary. I can't believe she's been gone 1 year already. Hitting the year mark is hard because before that, you can say, last year mom said this or we did this with mom. Now that a year has past, I feel further from her.
I have now finished 8 treatments of Taxol. Not gonna lie, I absolutely hate it. I just don't want to do it anymore.
I had scans on January 3rd. CT and Bone scans. My bones are stable. No growth, no regression. I was hoping for regression. My liver lesion has shrunk a bit. I have a lesion in the middle of me in the retroperitoneal lymph nodes which is behind my intestines and closer to my back bone than my belly button that has been growing consistently for that past few scans. It's about the size of a large plump grape. and some others near it that are growing too.
My breast doesn't seem to be responding to the chemo.
Overall, he said that my cancer is very heterogeneous....which just means that the tumors all have their own DNA and so we haven't been able to find a treatment that works for all of them. It frustrates me. and discourages me. Maybe I need to be more realistic about my expectations. I keep hoping for miracles and regression. My goal is to get to a point of No evidence of disease anywhere and then just stay on the maintenance drugs for years and years while the cancer sleeps. Maybe that's not realistic, but it's still my dream.
So, he doesn't want to jump ship too early with any of my treatments AND my tumor markers are coming down so we will stick with Taxol until the end and then go from there.
I'm pretty sure we'll have to do radiation on my breast, because it's just not responding well.
I thought I was in the clear with hair loss as nothing happened until after treatment number 6. So it has been coming out but not in clumps. I definitely can feel and see a difference at how thin it is, but some others can't. I assume with 4 more treatments to go that it will continue to come out and I will be bald.
It's interesting with all the scariness of cancer, how worried I am about my hair.
The first day, I stood in the shower and ran my hands through my hair and had so much come out and I stood there and cried. Now it's just daily that I get lots coming out.
My hardest days after chemo seem to be Tuesdays and Thursdays, however, I'm feeling yucky pretty much everyday now. I can tell that I'm not bouncing back as easily and the "poision" is taking it's toll on me. So far, Saturdays are my best days.
Hopefully that catches everyone up at where I'm at. Here's to 4 more infusions of Taxol poison! blech
I made it through Christmas and mom's 1 year death anniversary. I can't believe she's been gone 1 year already. Hitting the year mark is hard because before that, you can say, last year mom said this or we did this with mom. Now that a year has past, I feel further from her.
I have now finished 8 treatments of Taxol. Not gonna lie, I absolutely hate it. I just don't want to do it anymore.
I had scans on January 3rd. CT and Bone scans. My bones are stable. No growth, no regression. I was hoping for regression. My liver lesion has shrunk a bit. I have a lesion in the middle of me in the retroperitoneal lymph nodes which is behind my intestines and closer to my back bone than my belly button that has been growing consistently for that past few scans. It's about the size of a large plump grape. and some others near it that are growing too.
My breast doesn't seem to be responding to the chemo.
Overall, he said that my cancer is very heterogeneous....which just means that the tumors all have their own DNA and so we haven't been able to find a treatment that works for all of them. It frustrates me. and discourages me. Maybe I need to be more realistic about my expectations. I keep hoping for miracles and regression. My goal is to get to a point of No evidence of disease anywhere and then just stay on the maintenance drugs for years and years while the cancer sleeps. Maybe that's not realistic, but it's still my dream.
So, he doesn't want to jump ship too early with any of my treatments AND my tumor markers are coming down so we will stick with Taxol until the end and then go from there.
I'm pretty sure we'll have to do radiation on my breast, because it's just not responding well.
I thought I was in the clear with hair loss as nothing happened until after treatment number 6. So it has been coming out but not in clumps. I definitely can feel and see a difference at how thin it is, but some others can't. I assume with 4 more treatments to go that it will continue to come out and I will be bald.
It's interesting with all the scariness of cancer, how worried I am about my hair.
The first day, I stood in the shower and ran my hands through my hair and had so much come out and I stood there and cried. Now it's just daily that I get lots coming out.
My hardest days after chemo seem to be Tuesdays and Thursdays, however, I'm feeling yucky pretty much everyday now. I can tell that I'm not bouncing back as easily and the "poision" is taking it's toll on me. So far, Saturdays are my best days.
Hopefully that catches everyone up at where I'm at. Here's to 4 more infusions of Taxol poison! blech
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