For Crying Out Loud

I have gotten some feedback from last weekend's blog entry that I was not quite as clear as I might have been. I thought it was pretty obvious and in so doing, I think I skipped some parts that were not so obvious to others. I will try to make more sense of things.

As I think you know, I started feeling less well in August. I have gone back to the doctor's several times trying to find the answer. The question being, if this is not the cancer, is there something we can do about it? What I was not getting was the answer, what you are feeling is from the cancer. We can address the symptoms, but not the cause. Since I was not getting that answer, I kept asking and complaining. Hence, the CT scan and bone scan and then MRI. In the CT scan they found a mass in the area of the stomach. (I know, I know, I am repeating myself.) I asked if this mass was cancer or something else. He felt strongly that it is more of the cancer. And the reason I am having trouble eating and am losing weight. I have been losing at about the rate of 3 pounds a month. If I wanted to lose weight, well, then that would be a good rate, but I don't.

After the MRI, I called the doctor back. I am glad that I don't have cancer in the bones. I hear it is very painful. What they did find was that I have a fractured vertebrae (T12). I'm not sure how that happened. It may have been when I fell in the shower. Or not. It is from osteoporosis. Whatever showed up on the pelvic region on the bone scan didn't show up on the MRI at all, so it is dismissed.

I couldn't quite leave it alone, so I called again. I said to the onc that I felt we were still missing something because the area that was causing me the most trouble is my lower abdomen/pelvic region. Finally he said, make no mistake. That is from your disease. The CT scan is just not fine enough to find it, but it can still be causing me problems. Strictures, obstructions, etc.

The question is, What's next? The onc would like me to try Xeloda, which is an oral form of 5FU, a very well-named drug, in my book. The idea would be to reduce the effects of the cancer, purely palliative. I must say, I feel very little enthusiasm for this plan. I realize that to not do this would make the path certain, but I had a bad reaction to the 5FU. I suspect that I will have a similar reaction to the Xeloda. Frankly, the disease is bad enough. I don't need added effects of the drug on top. And I don't really think it will do much good, either. It didn't seem to do much when I took it before in intravenous form.

So, Daddy and I are taking some time on Wednesday before he starts at UH to go to the Gathering Place and consult with the medical librarian. It is so hard to find objective opinions. (Is that contradictory?) This is a hard decision to make.

Anyway, I hope that has cleared things up. If not, please ask. If you are confused, there is a good chance that someone else is too, so you would be doing a service to everyone who reads this blog to ask me to clarify. Thanks for staying with me on this. It is not always easy to write about.

Posted by Maman at 4:04 PM | Permalink | Comments (8)

I woke up when Daddy came in from work -- 7:30 am. Plenty of time to accomplish what was on my list. I'm glad he stopped at home, or I wouldn't have seen him for almost 24 hours. He took a shower and headed off to a doctor's appointment. (He's is the picture of health, thank God. No worries there.) I got up, ate, showered, the routine.

Then I went to Heinen's to order Thanksgiving dinner. That was more difficult than I thought it would be. For one thing, they don't have their brochures printed yet. I mean, come on, Thanksgiving is less than 3 weeks away! For another thing, I had to have this 10 minute conversation standing up. That is getting more and more difficult to do. (This would have been so easy to do on-line!) But the real difficulty was in letting go . . . letting go of the menu (I have to choose from what they offer), letting go of the image of good cook, hostess, etc. I realize I will probably never cook Thanksgiving dinner again. That made me sad, but I was in a hurry and didn't pause to think of it at the time.

I drove to Lakeland for my W2W workshop. I feel like such a failure in this arena. We are supposed to be focusing on Career Choices/Career Planning (The Myth). First of all, in the name of keeping peace between departments, I asked if someone from Counseling could lead this workshop. They sent two men to to a one woman's job. And they sent men to lead a women's workshop. Not the end of the world, but sort of not getting the point. Then, well, many of the women in the workshop are . . . fragile. Several are dealing with domestic violence, some dependency issues, self-esteem, basic security, isolation, to name the obvious ones. There was more pain spilled on the floor yesterday than I have seen in a while. The problem with that is that Counseling feels the Women's Center isn't actually qualified to run these sort of workshops because we 'are not counselors', which, indeed we are not. So, I am sort of afraid of the repercussions.

From there, on to the AFC (gym). I cleared out my gym locker and turned back my lock. Another moment of reality combined with grief. I can no longer walk the track. I have trouble walking all the way down to the gym. It just felt so final. And sad.

Then on to LakeWest. Lake West? you ask. As in Lake Hospitals System? Yes. I had an appointment for a two hour MRI. You might be wondering why I had an appointment for an MRI. This has not been part of the diagnostic tool box so far, why now? Last Monday I had a bone scan and a CT scan. The bone scan showed 'something' at my T12 vertebrae and on my pelvic bone. I have been having back pain, which is what triggered the bone scan in the first place. The CT scan also found a mass in the area of my stomach, which apparently wasn't there when I had my last scan in September*. That was then, this is now. Back to the MRI.

I am here to tell you that that was my last MRI. I will not do that again. I don't care why. I am not going through that again. MRIs are not in and of themselves painful. But laying on the very hard table on my sore and no longer well padded be-hind was. For three (3) hours and perfectly still. I was in tears. It was (while not a ten and not kidney stones) something I don't want to repeat. Ever.

I came home and Daddy had cleaned up the living room. Most of it migrated to the spar'oom, but it was out of sight. Because we were hosting feast. I was exhausted. Daddy was also tired from working, going to the doctor's and not being able to get back to sleep. But the community pulled together and brought refreshments. They must have enjoyed themselves because I had to ask them to leave at 10:30.

As I said, yesterday was a busy day.

Today we are going to Medina for the young Dornbrooks' birthdays. Actually, I think it is just Jaci. Garrett is staying down at OSU. Tomorrow Uncle Thom goes in for knee replacement.

And a few post scripts:

Look who came for dinner? And stayed the night.

Houston, I think we have a problem.
The funny part is that I knit the same socks (and yes, I count both the stitches and the row) with another brand of yarn with the same yardage . . . and had leftover yarn. Go figure!

I think this is why they are called Morning Glories.

We finally (after about 25 years) planted bushes out front. Don't worry. They will grow in and look beautiful in about 5 years or so. They still look just a tad scrawny at the moment.

This one is the Beauty Berry bush. Aren't these berries the most impossible color? When I first saw them, I thought someone had wired these berries to the bush.

*I do suppose I have to talk about that mass in the area of the stomach. It appears that that is what has been causing the full feeling, the loss of appetite and accompanying weight, and severe heartburn.

I'm still not really talking about either of these things very well, am I? Sorry. I know what they mean, but not just what the next step will be. What they mean of course, is that the cancer is progressing, breathing down the back of my neck, you might say. Anything we would do at this point would be strictly palliative. I do not want anyone suffering under the delusion that we can beat this beast. Anything we do will simply be to make me more comfortable. And, no, I haven't been all that comfortable for the last 3 months now. I adjust and cope as best I can, but things are going downhill.

Posted by Maman at 10:37 AM | Permalink | Comments (6)