Still waiting

Well I have to say this is the longest I have waited for an appointment since this whole process started 2 years ago. I have still not heard of my MRI date. I have made several phone calls but no call back with a date. We are off to Panorama tomorrow afternoon until Thurday afternoon. So it for sure won't be until the week after we return.

Still wobbly but no headaches or dizziness. Maybe everything will heal itself by the time I get an MRI date.

Happy Canada Day to everyone!!

Love Carolin

PS I won't be blogging until I get back.

Waiting

Still waiting for an MRI appointment. My head is a bit clearer than it was on the weekend but I am still really fatigued and my balance is still affected which causes me to stumble quite a bit and weave back and forth. The mornings are better than the afternoons.

Hopefully we will have an answer soon.

Carolin

Enjoy the sun!!

Dr. says...

Friday I went to see my oncologist. He was concerned that I was having a lot of the symptoms that I had with my previous brain tumours. He did a lot of things to check my nerves, coordination, and strength. I thought I did fine. Sandy says my right leg flunked a bunch of tests (reflex and sharp/dull). But what does he know, The doctor scheduled me for (another) MRI on Monday or Tuesday. He listed the things it could be. Funny how his lists have more bad things than good things on them.

I'll won't really worry until I have to ask directions to the MRI machine. Then I'll know something's not right upstairs.

Legs quit

This morning while chewing my morning multivitamin, I fell on the floor. Sandy said there was a little piroette involved but basically I fell down without warning. I got back to bed but I couldn't walk. At noon I tried again. It wasn't pretty. Hot flashes. Cold flashes. Light headed and generally a hazard to small things that crush easily. I called and cancelled my herceptin (not something I do lightly).

Then I got a surprise. The cancer clinic called back and said that the herceptin was premixed, cost $3,000 a dose (!!) and I had better go get it. Friends rallied around and got me there and back. Now at supper time, I'm just a little dozy but I can walk. I going to cut back on the Tylenol 3s.

What did it? Don't know. Hopefully low blood pressure.

Busy news day

As I was driving out of town on Friday, I found out that today was the time for moving my port. This involved removing it from the left side of my chest and inserting it on the right. This is day surgery but when I got there I found out that an overnight bed had been reserved for me 'just in case'. Is there nothing in my life that doesn't have drama??

The operation went OK but I ended up very sore on the right side with big time bruising already. I have herceptin scheduled for tomorrow but I'm not letting them near that port until it stops hurting. Thinking about that makes my eyes water.

I stayed at the hospital until my afternoon appointment with the oncologist rolled around. He had a lot of news:

- I need an enhanced MRI to see what is going on in my head. There's three choices, the tumour's bigger (bad news), there is a chemo reaction called necrosis which can occur when the chemo inflames the previous site of an operation (bad news as it can require treatment), or nothing new (good news). No date for it yet.
- My last round of chemo didn't work. The liver cancer continues to grow with a new spot evident. So the chemo continues. The new chemo is a pill I take twice a day for two weeks, then one week off, then more pills. Great news - my hair won't fall out and it won't make me fat. I told the doctor that was my best birthday present. I start it tomorrow. Well of course there's a dark side to the pill chemo. You can get a reaction where the skin on your hands and feet peel off. I think I'll notice that.
- The bone scan is 'really tricky' to read. The report wondered if there was something going on in one vertebrae. This spot has been seen before and thought to be a dead tumour that left a space. Anyway the treatment for it would be the same as I'm going to be taking anyway.

I'm very tired. Why does the final hockey game have to be tonight?

Love
Carolin

Neck MRI, Muga scan, Dye study results

When I saw my oncologist on May 29th he told me his version of the MRI on my neck. He said that the report said that there was slightly less height in the C3 but no narrowing of the spinal canal. That is good news. There is still shadowing in the C6 so they will keep a watch on that.

My muga results were fine. 68% this time and last time it was 70%. I don't know what the acceptable range is.

Yesterday I had a dye study done on my port. They put me under a special machine that they do angiograms with. They then injected dye into the port and watched as the fluid traveled through the catheter. And guess what. It didn't!! It flows close to the end and then backs up into the small vessels in my front shoulder/chest area. This is a no-no. It means that the chemo is entering little tiny veins in a concentrated form. The chemo would have still circulated through my body but that is probably what made me so sick last time. So they cannot use my port anymore. I will see the port surgeon next Thursday. I believe that the choices are to fix the catheter in this port (it use to go straight down but is now has a 45 degree curve in it) or to remove and replace the whole thing. It is only day surgery but they still need an operating room. I don't know how long this will take. I guess my next Herceptin treatment will be done using an IV in my hand. Yuck!!

Sandy and I had a great a little vacation to Victoria and celebrated our 9th anniversary. It was nice to get away and not be a patient for a couple if days.

Nothing else new. Next week is a bone scan on the 12th, a chest and abdomen CT on the 14th and the port doctor on the 15th. I will not get the results of the scan and CT until I see my oncologist the following Monday. I will post the results as I get them.

Bye for now.

Love Carolin