Published January 2, 2009
I have been having a hard time finding my place. Getting back to any kind of routine. I think once the kids get back to school things will get better.
I started having a lot of pain in my shoulder. I thought it was bursitis, I have had that before, but oh no, it could be something has simple has that, of course it is another tumor! (My joke about turning into a big tumor is not funny anymore!) I have a bone scan next week to look for more. Woo hoo, just what I want to be doing!
However, my chemo is doing great and must be working, even on the tumor in my shoulder. I don’t even feel it any more. I love the days when I don’t hurt!
We went to a little party last night. I decide to start a ‘Say “No!” to Bad Hair Days’ campaign and wore one of my wigs.I looked great. This morning my hair does not look as bad, just a bunch curls. It would be okay if it was a little thicker, but of course it is falling out, so it get thinner by the day. I probably need to talk to a stylist and find out how to wear and care for thin curly hair. I know it is only hair and should not matter at all in the grand schem of things, but when you look in the mirror and someone you don’t know is looking back at you, it is disconcerting.
I am working on being more positive about some of things I have been whining about. Mainly my nephrostomy. (A nephrostomy it a tube that goes through the back in to a kindey and drains it externally) I have hated it ever since they put it in. What I need to to instead is regognize that with out it I would probably be out one kidney by now. So hooray for the nephrostomy! (no matter how annoying it is.)
Published December 3, 2008
I spent most of November in the hospital. We started a new chemo, decided it was’t working and started another, gemzar, that seems to be pretty good.
My pain is down a lot and pretty much under control. Pain under control means a lot to me. I would say it is VERY high on my list. Just thinking about not hurting makes me smile.
MY middle son Bear has moved home to help me. Ah how nice is that! He willl not be staying here long term but plans to stay close so he can help me now that I can not drive. It means a great deal to me to have him here.
Published November 7, 2008
This sucks, huh? I really wanted to beat this with no
I have a tumor near the original location and mets in
my lungs. I started avasten and taxotire last night
along with lots of pain meds.
I was in the hospital addressing the kidney problem when they found the cancer. The nefrostomy (put a tube through my back tp drain the kidney, likely to always have one now.) they performed does not seem to be a big deal now,
They do not think surgery is an option. I think
because it would be very tough involve a long recovery
and initially the loss and later reconstruction of
some important parts of me, with little hope for
stopping the cancer from ever coming back in that
area. I now see why retropereteneal is so bad. The
mass is 1/2 the size of the original and I was in
agony most of the week. (I guess if I had not had the
lung mets surgery was the way to go.)
I may not lose my hair this time, but I have lots of great wigs if I need them, One if the things that really ticks me off is that I can’t drive now. (too much pain medication. Mrs. Woods and I are trying to work out a way that I can still work for her even though I can’t drive. Bear may take over my computer support business, (what is ledt of it) I can no longer provide the quality of support that my clients need, One more thing to cry over.
I am doing okay, I wanted it to be different but I
knew this was the most likely outcome. I am sad and
disappointed but not completely surprised.
Published September 30, 2008
The cancer front is still good. The pain front is still bad. Looks like all my problems are, just what the doctor thought, related to treatment side effects. Whee!
I like my doctor a lot. He takes pain very seriously and does what he can to increase me quality of life. Currently most of the day is usually pretty good.
Pain management seems to be all we can do. Apparently there is no way to make fractures heal faster. Where is the magic wand when you really need it? :)
I do not post as often as I would like. I am working for Mrs. Woods, and on a couple of writing projects that hope will be ready soon. Also planning a little weekend get away with LOML.
This week is my 1 year cancerversery. I have out lived the median life expectancy of my original diagnosis. (It was not til a month later that we knew what I really had, angiosarcoma has much better prospects.) Pain wise, even on my worst day, I feel better than I did before they did my surgery, so I guess I am okay.
Published September 14, 2008
My pain keeps getting worse, more intense. I do not see endocrinology until later this month, but I am starting to think that something else must be going on. (hopefully not cancer!)
I was just miserable and finally called my doctor Friday. He had me admitted and readjusted all my meds. What a difference! Currently I feel really good most of the time. We also did another MRI and will get together on that later this week.
My doctor is really good about staying on top of things but I forget that my pain is part of the things he want to keep under control. I am sometimes still in that pre-cancer mode, where you just tough it out and feel like a baby if you can’t.
My husband and a close friend are people who have chronic pain with no known cause. It would be so nice for them if someone could help them get the pain under control and find the root of the problem. My cancer diagnosis makes my pain a priority but so many people are suffering!
Published August 18, 2008
To get back to my original focus from last year, I (again) cleaned off the table over the weekend. I should say I sat in the chair and directed the clearing of the table. It is hard to do anything by myself using crutches. :) We also organized some book shelves and donated or tossed a bunch of stuff. I am so proud of us!
I redid my computer desktop using this wallpaper. I also added post-it notes lite, to cover to do list and such, and now I have a wonderful organized desktop. It takes so little to make me happy.
Tonight I am going to, with the help of my favorite helper monkey, Coder, going to put together a computer out of old parts. I am going to hook it to the TV so we can watch Netflix and other online contact on the TV.
Published August 14, 2008
First the good news, all is well on the cancer front I am still no sign of cancer. I however have the lovely sacral fractures, that are not getting any better. I now question whether or not they were caused by radiation or maybe from the Lovenox shots I take every day.
A scan from last year showed I had ostiopina (sp,) so maybe this was coming regardless; it would have been nice if someone had told me…I could have been addressing it all along.
I am now on crutches for the next 8 weeks. Crutches seem to come in only one kind, (at least the one my insurance covers,) UGLY! I know that is a stupid thing, but my hair is coming back but it is now thin and mouse colored, not mousy brown which I could deal with, but an ugly grey, it used to be very thick and a mahogany color. (if it stays thin like this I will keep it very short and just wear my wigs.) Now I get to hobble around on ugly crutches too. :(
I am thinking I will just takes some paint markers and go to town on them. I am waiting for inspiration.
I was doing very strenuous work and it likely contributed to my problems. I am probably never going be able to do my job at the level I was before.
I am feeling pretty discouraged. I wish my life had a reset button, so when you get stuck, like some video games, you could hit the button try again.