I have probably lost all you faithful readers by my silence. I am so sorry. It has been quite busy around here, but one thing at a time. Today I am going to focus on the cancer part of what has been going on.
It has been so long since I posted that I actually had to go back and reread my last post to know where I left off. A lot of small things have happened since then. As you may remember, I was a bit confused by my last conversation with the onc. No Evidence of Disease just didn't seem to jibe with what the surgeon had told me, spots on my sigmoid and my diaphragm and all over my peritoneum. So I called back. When I asked how the scan could come back NED when the surgeon saw spots, the onc replied, "Oh that's easy. Scans only show so much. I always trust the eyeball over the scan." So that let's us know where we stand there. Yes, of course I have mets. I think it was one of those Duh! moments for me. He went on to say that I have 'biologically indolent disease'. So my cancer is lazy! I must admit, I laughed out loud when he told me that. I think that is the only time I have heard the word indolent used in a positive light. So that was good for a while and I went about my business of working, bouncing my darling grandson and what ever else I do.
Then I went in for a port flush. This is just routine maintenance, like changing the oil in your car. I had not been feeling particularly well and robust the previous few days, nor was I feeling well at that appointment, but nothing too specific that I could put a finger on. Oh, sure I could describe how I felt (awful) but I didn't know what the problem was, so therefore it wasn't quite real. (I know, that makes absolutely no sense at all!) The nurse suggested I increase my Darvocet to 3 a day instead of just at night, which was how I had been coping. The pain was the worst at night. And we made an appointment to see the doctor. The increased pain meds helped me cope. Now, I don't want you to get the picture that I was unable to carry on with my days. I went to work, 40 hours a week, came home and mostly sat, but I carried on. I think Mara and Daddy were concerned, but there really wasn't much to do about it. We got out the heating pad and that seemed to make my back feel better while I sat on it. So my symptoms were that my back hurt, especially at night and my abdomen/pelvic region hurt.
I saw the doctor and he ordered another CT scan (or as my friend in group say, Cat Scam). I begged the tech to tell me what she saw. She has been doing all my scans since the beginning, so we have developed a bit of a relationship. She came back in after my scan was finished and said, "Between you and me, you're full of poop." (I love it. I know people who have been waiting to tell me that!) And I thought, that seems consistent with how I have been feeling. By the time I had gotten back to the office, my doctor called. He's good that way. He told me that this scan looked better than the previous one, in that I had less fluid in the pelvic region. Great, but that really didn't address my issue. So I discussed the possibility of being plugged up. He didn't really seem to think that was my problem, but was okay with me going to a gastroenterologist. And I increased my fiber. For anyone who has eaten with me, you have an idea what that means. I felt a bit better, but this whole thing kind of comes and goes.
Yesterday I a) came down with a horrible cold and b) saw the gastroenterologist. (Did I mention that one of the symptoms is that sneezing is horribly painful? It is like someone is ramming a broomstick up under my ribs on the left side. I don't like sneezing. There are a few other things that trigger the same thing: Eating a bit too much, exerting myself after a meal.) Dustin and I sat in with him for quite a while talking. First I sort of had to give him my history. He almost seemed to not believe me, but than there are points that seem incredible. Anyway, after looking at the scan and the report, etc, and listening to me, he didn't seem to think being FOS (as he put it) was my problem. He thinks it is just my mets.
I say, Just my mets, but that carries a whole lot of weight for me. It feels like I am on the downward slide and it is just a matter of time. I knew it would come to this, but getting there is hard. I have good days and not so good days. I would prefer the good days to outnumber the not so good ones. And, of course, I have no idea how long this will last. It could even last years. I must say, I don't find that especially comforting. Now to put this in perspective, this was all going on through family reunion, so those of you who saw me know that I am still up and functioning.
I am sorry to depress you with this update, and I'm sure things won't stay as they are. They never do. And maybe I am the only one depressed by all this. So bring me joy and light. I am staying home and pampering myself today.