My bad...

I knew I hadn't posted in a while but I didn't realize it had been eight days. Sorry about that!

I finished the radiation treatments on Tuesday and we were very glad not to have to go into the city another day -- especially since it started on the 8th with my follow up with Dr. Yamada and ended up with me in the hospital again on the 9th. Eleven days of either being in the city (me) or traveling into the city (Ed) is waaaay too much. After my treatment, I saw one of the residents (the radiation oncologist was not in) and she reminded me that it could be some time before I felt or saw any change. So far, the swelling in my hands and feet, which were pretty bad by Wednesday the 14th, have improved and the veins that were extremely prominent on my chest and upper arms (a sign of a compressed SVC I've come to learn) are less so, but the past two nights I have been unable to find a position in which I can be both comfortable and breathe easily -- especially without wheezing. Yesterday I restarted the six day course of steriods that the resident put me on on the 14th, so hopefully that will help me breathe easier very soon. If not, I'm not certain what the next step is, but I can't go too many more nights without getting more than 30 minutes of sleep at a time.

My next appointments have gotten really messed up, but I do have a schedule. August 2: 11 am nutritionist follow up; 1:45 pm neurosurgeon follow up about this huge cyst that still exists on the back of my head (I was told by his nurse that while it is unusual, it does happen and it's spinal fluid leaking out of the incision in my skull -- which would be practially impossible to find; more on this after we see him and find out if I even have any options); and CT scan of the chest, abdomen and pelvis at 4:05 (arrival at 3:05). We then see Dr. K the next morning at 11 to find out the results of the scans and when I restart Ifosfamide. I'm guessing it will be around August 10.

I have been doing a whole lot of nothing around here. I can barely do 14 minutes on the treadmill and going up stairs is a real chore. I don't know whether it's that I'm totally out of shape or this tumor has swelled from the radiation and it's making me very short of breath. I'm guessing it's a combination. I'm trying to get at least one thing done a day (this doesn't count) so at least I feel that I've accomplished something. We'll see how that goes.

At least I'm down to one medication daily (the steriod is temporary). I took myelf off the sodium and water restriction to see if it would help with the urination problem (I still can't believe I've been writing about this). It's made a big difference and I guess I'll find out when bloodwork is done on the 3rd how my sodium and other levels are. I probably should have my blood pressure checked before then since I'm off the medication for that too.

I no longer go out, even on my porch, without a hat. I don't have much hair at all, although there is some up there, and I certainly don't want to burn my scalp. If I didn't have this huge lump on the back of my head, I could wear more baseball caps, but I need bigger hats to hide it. Also, if the swelling would go out of my face, the hats would look better too. It's a good thing I'm not too vain!

It's supposed to feel like 100 degrees here tomorrow so you know I'll be indoors keeping cool. Hope the weather is more comfortable wherever you are -- or that you stay as comfortable as possible. Have a great weekend!