Adenoid Cystic Carcinoma in the news
5 years ago
Monday, November 10, 2008
Pics from vacation in Wisconsin
Here are some pictures from my vacation with my family in Northern Wisconsin.
Catching Up
It's been awhile since my last post. That's because things are at a standstill. I'm no longer taking any treatment. No chemo, no pills. And I won't be taking anything until December 2nd when I have another CT scan, and the 4th when I will review that scan and have blood tests.
Seems that whatever is going on with me is Not a rapidly growing cancer. Nothing has really changed since I was diagnosed back in August 1 2007. Seems strange, when at that time they told me I was Stage 4 terminal, non-operable, cancer in my liver. But,,,,, guess what? I'm still here.
I've not had any Xeloda, or any treatment for a few weeks now, and my body is definitely detoxing. I'm sleeping like crazy! I don't "feel" exhausted, but if I dare rest my head, I'm asleep. My skin is also going nuts. I itch. My skin has pretty much pealed a layer. My eating patterns are disrupted. I am craving sugar. Even if I eat sugar, I have no energy. I've been working about 20 hrs/week, and am exhausted when I come home. I nap. Then I go to bed and sleep. Weekends are mostly slept through. It's weird.
My sister has been going through crises and she didn't tell me until it was defined, at least somewhat. They found a new spot on her lung and went crazy. It was a new thing, looked like cancer. If she'd metastasized from her breast to lung it would really be bad news. Fortunately they say now that it's not cancer. She had a lung biopsy that sounds hellish. They then tested her for TB, so far, not that. More tests, some which she'll find out about on Monday. God Damm!! She shouldn't have to go through this and I'm so unhappy that she went through a weekend of thinking she'd metastasized and didn't tell me! I get why she didn't but I still feel bad.
If you can't go through cancer with your sister who also has cancer, who the hell can you share it with?
We've found a neet thing tho. We are both on Skype and have video cameras. It's so fun to SEE JB while we chat! Everyone should do this! Other than buying the camera (her's came with her new laptop, I bought one) it's FREE! What a treat!
Life otherwise goes on. I'm trying to figure out what to do about Thanksgiving... I'd love to go home but it's not really in the cards. For Christmas I'm going to Chicago and staying with my daughter, Tara, I can hardly wait for that! I bought my ticket last July, when I still thought that I might be in hospital by then, maybe dead. It was such a leap of faith! But here we are almost to the middle of November and I'm so fine! What a gift! Until you have really believed that you have not long for this world you cannot imagine what it feels like to think that you will be around next week. Trust me on this one.
The only things I think about these days is my family. Tara is the biggest, of course, but so are my brother and sisters. It breaks my heart that my youngest sister, Susan, is not "with" me. She's only a few hours away, yet she doesn't talk to me. She, i have to say it, ripped me off this summer. I'm unhappy about that and I wish so much that she'd talk to me about it, but she doesn't . I did finally get a generic email when she moved to Bisby, AZ, and one or two more, but so far, she is apparently in denial. She won't talk to me. We've not talked since June, when I let her live in my house when I moved to my new apt. Double rent thing... She has no clue what's been going on with me, or Janel, I gather, since then and apparently doesn't care. She wrote me in an email that I could "tell" her what's going on, but didn't ask any questions. As far as she knows, I could be on death's door. Last June I was thinking about my funeral! I know many people have family issues like this, but to me, it is the most hurtful thing I can imagine. Apparently she just doesn't care.
I know she has her own health issues, but the point isn't how self-involved you are, it's what you feel about others. I wrote her an email, talking about how hurt and disappointed I was. I said "they" and "You guys" to soften it a bit, but was talking about Sue specifically, She wrote back sort of excusing the others _ Janel has cancer after all --- but obviously missed the point. Broke my heart and to this day I've not responded. How can I tell her that SHE is breaking my heart when apparently she doesn't have a clue? I dunno.
Family stuff, I guess. Totally unbelievable how much it hurts.
Seems that whatever is going on with me is Not a rapidly growing cancer. Nothing has really changed since I was diagnosed back in August 1 2007. Seems strange, when at that time they told me I was Stage 4 terminal, non-operable, cancer in my liver. But,,,,, guess what? I'm still here.
I've not had any Xeloda, or any treatment for a few weeks now, and my body is definitely detoxing. I'm sleeping like crazy! I don't "feel" exhausted, but if I dare rest my head, I'm asleep. My skin is also going nuts. I itch. My skin has pretty much pealed a layer. My eating patterns are disrupted. I am craving sugar. Even if I eat sugar, I have no energy. I've been working about 20 hrs/week, and am exhausted when I come home. I nap. Then I go to bed and sleep. Weekends are mostly slept through. It's weird.
My sister has been going through crises and she didn't tell me until it was defined, at least somewhat. They found a new spot on her lung and went crazy. It was a new thing, looked like cancer. If she'd metastasized from her breast to lung it would really be bad news. Fortunately they say now that it's not cancer. She had a lung biopsy that sounds hellish. They then tested her for TB, so far, not that. More tests, some which she'll find out about on Monday. God Damm!! She shouldn't have to go through this and I'm so unhappy that she went through a weekend of thinking she'd metastasized and didn't tell me! I get why she didn't but I still feel bad.
If you can't go through cancer with your sister who also has cancer, who the hell can you share it with?
We've found a neet thing tho. We are both on Skype and have video cameras. It's so fun to SEE JB while we chat! Everyone should do this! Other than buying the camera (her's came with her new laptop, I bought one) it's FREE! What a treat!
Life otherwise goes on. I'm trying to figure out what to do about Thanksgiving... I'd love to go home but it's not really in the cards. For Christmas I'm going to Chicago and staying with my daughter, Tara, I can hardly wait for that! I bought my ticket last July, when I still thought that I might be in hospital by then, maybe dead. It was such a leap of faith! But here we are almost to the middle of November and I'm so fine! What a gift! Until you have really believed that you have not long for this world you cannot imagine what it feels like to think that you will be around next week. Trust me on this one.
The only things I think about these days is my family. Tara is the biggest, of course, but so are my brother and sisters. It breaks my heart that my youngest sister, Susan, is not "with" me. She's only a few hours away, yet she doesn't talk to me. She, i have to say it, ripped me off this summer. I'm unhappy about that and I wish so much that she'd talk to me about it, but she doesn't . I did finally get a generic email when she moved to Bisby, AZ, and one or two more, but so far, she is apparently in denial. She won't talk to me. We've not talked since June, when I let her live in my house when I moved to my new apt. Double rent thing... She has no clue what's been going on with me, or Janel, I gather, since then and apparently doesn't care. She wrote me in an email that I could "tell" her what's going on, but didn't ask any questions. As far as she knows, I could be on death's door. Last June I was thinking about my funeral! I know many people have family issues like this, but to me, it is the most hurtful thing I can imagine. Apparently she just doesn't care.
I know she has her own health issues, but the point isn't how self-involved you are, it's what you feel about others. I wrote her an email, talking about how hurt and disappointed I was. I said "they" and "You guys" to soften it a bit, but was talking about Sue specifically, She wrote back sort of excusing the others _ Janel has cancer after all --- but obviously missed the point. Broke my heart and to this day I've not responded. How can I tell her that SHE is breaking my heart when apparently she doesn't have a clue? I dunno.
Family stuff, I guess. Totally unbelievable how much it hurts.
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