Tuesday
I’m so far behind, I don’t know if I’ll ever catch up. I think I left off before I saw my doctor the last time and before the CT scan. I know I’ve put short snippets on FB, so sorry for the repeats, but not everyone who reads my blog is on FB.
The last time I saw Dr. Page, it was shortly after the Gemzar/Taxotere combo therapy. I was convinced it had stopped working. There was no improvement whatsoever. Dr. Page looked at me and agreed. You can see pictures at the end of the blog. He looked around on his computer and came up with Avastin. It is not classified as a chemo, but rather a blood vessel growth inhibiter. It cuts off the blood supply to the cancer cells, and they die. It is not listed specifically listed for AS, but neither has any of the other chemos I’ve taken. I was just happy to see there was something else to take. I thought it was the end of the road again. Dr. Powers (KC) had mentioned Avastin over a year ago, but for some reason went on with a chemo at that time. Avastin is given IV every other week. I get labs every week to see if I need Procrit – a hemoglobin builder. Avastin is not supposed to affect the blood counts.
The day before I saw Dr. Page, I got my CT scan. I saw Dr. Page at 9:30 in the morning, so while they did have the report, they didn’t have the comparison with the last scan report. Dr. Page looked at the current report and said he didn’t see anything there to be concerned about. That was a relief, because it seemed my whole life hung on this scan. Later in the week, I got a copy of the comparison with the last scan, and there was actually improvement! Praise the Lord!! That was reason enough to fight on!
The first dose of Avastin went well. They had to go more slowly and take my BP every 15 minutes, because it does cause a rise in BP. But my BP has been running so low, it never got really high during the infusion. It does run higher from day to day, but not dangerously high. I didn’t really see any side effects until the second week – this past week – when the weakness set in. An occasional slight headache and wobbliness were also noted. Other than that, I’ve really felt pretty good. Avastin is tolerated well by most people. The first time I was to get Procrit, my hgb was high enough that I didn’t need it. Each week my lab work has improved so I haven’t needed to take any of the shots. Today, I felt fine during the infusion and haven’t noticed any untoward effects so far. But I can really see an improvement in my face and head. You’ll see a major difference in the pictures below. So something is certainly working.
I’ve got this one spot on my forehead that is frustrating. If I bump it, it begins to bleed, and bleed, and bleed!! I have to put a pressure dressing across it and keep it there for a day or two. About a week ago, I got up to go to the bathroom in the night, and it had started bleeding – all over my pillow and my sheets. I had to quickly grab a tissue, and another tissue, and another! When I would grab another tissue, it would just pour out of the bump! It even got into my left eye. I had to rinse out my eye with saline eye drops. I thought it was pretty much drying, but I must have bumped it in the night or accidently scratched it, so I was up at 4:00 am this morning, trying to stop the bleeding. I put xeroform on it and folded up a 4x4 and quickly slapped it on and taped it down very tightly. The first few times, I left it on too long and when I took it off, it had dried too much, and pulled the scab off, and it bled again. Now, I leave it on 12-24 hours, and remove it. I took it off this evening, holding my breath, and so far, so good this evening. Now if I can just keep from bumping it in the night!
My biggest issues are swollen eyes, making reading difficult, and my fingernails continue to deteriorate. I’ve lost 2 nails on my right hand.
It is kind of surprising that my right hand is affected more than my left since everything affected is on my left side. I can see normal growth at the base of most of my nails, so they are just going to have to grow out. Nails take about 6 months to grow out. So far, I’ve been able to still play my keyboard at church. My eyes bother me more seeing the music than my nails and neuropathy do.
We’ve enjoyed another week of Mark and Amy here. Mark did a lot of the cooking again. We enjoyed that. And he did a lot of little errands that we needed done. It was so easy for him, but just too much for us. He hung a big mirror, and helped to hang a few wall hangings I wanted hung.
This is quilted by using embroidery machine.
This is a wall hanging he put up in my bedroom. It was done many years ago and all hand done. It is one of my favorites.
They went home to OP yesterday to get ahead of the storm.
Here's a few pictures of Annie. She loves to dig me out of a blanket I take a nap in and then wants her tummy rubbed.
Right after we got home from McPherson today, it started sleeting, and soon changed over to snow. The last measurement was 7 inches. It came down so fluffy and beautiful – very little wind. Mark said it was a white-out in OP. Then next weekend, another storm is to come through. Can you say, “Tired of winter”????
I’ve done a little sewing. I saw a tutorial from Jordan Fabrics for a table runner with prairie points. It is made with charm squares (5” squares). I think it is going to turn out really cute. I’ve also crocheted 2 hats, and I’m working on the 3rdone. 2 of them are basically the same pattern – just different colors. The 3rdone is a different pattern – not liking it all that much, but maybe when I get it done, it will look better. My collection of hats gets used a lot in the winter.
I did a couple of DIY projects. One was a place to hang my necklaces. It is just one of my thread holders.
We have this shoe store in McPherson – Brown Shoe Fit – that we just love. The owner is the most likeable guy and obviously a great sales person, as we both buy something every time we go in there. They had this big clearance sale the other day. Guy found him a pair of shoes, and I found these cute boots
– and they fit!! Then he showed me this other pair, said they were the last pair he had in the store.
Since I was already going to get the 1stpair, we couldn’t afford for me to get two pairs. He was holding them up, waiting on me to make a decision, and Guy jokingly said, “I’ll give you 10 bucks for them.” The guy thought a second and said, “OK!” WHAT?? The shoe was originally $150 marked down to $99!! He said that we were good customers and shopped there often, so he just made us a deal!! So, I walked out of there with two pairs of shoes – one of them costing me $10!!!
Wednesday
It got too late last night to get this published, so I’ll finish. Guy is outside with his snow blower – using it for the first time. And someone is clearing off the driveway with one of those little skid steers (I think that’s what they are called) with a blade on the front of it. How nice of them!! It was one of the neighbors!
When I got up this morning, I found my glasses on the floor beside my bed. I must have stepped on them because one of the lenses was lying beside the rest of my glasses. The little plastic strip that holds the lens in place was broken.
Luckily, I found an old pair – don’t know if it was the last one before my current ones, but at least they are working for now - until I can get to Hutch to have the others fixed.
We just came back from a little drive around town. All the streets are plowed, so it is easy to get around. It is just a winter wonderland, so beautiful!!
Annie finally got used to going out in it - almost up to her chest.
So far, I am feeling good. I didn’t have to get up in the night to put a dressing back on this alien on my head. I hope the scab holds long enough for the Avastin to kill it!
I have some choices to make this afternoon – working on that little table runner, crochet on my hat, or take a nap. Guess what’s going to win out??? J
I think this pretty much catches me up to date. As always, I really appreciate all your support and prayers. So far, something is working, and I’m hopeful once again.
As always…..I’m in His hands….
Scroll down for pictures
Jan. 27th when the double chemo stopped working.
You can see the pressure dressing on my head at that time. Lots of purple and lots of fluid (blood).
This is taken yesterday. You can see the one that keeps bleeding - in the 2:00 position. Hardly any fluid under the skin now.
The side of my face is drying and there are two major spots instead of 3.
