It's taken me a week to be able to write this blog. Just thinking about what I had to write had me bursting into tears. Does anyone ever run out of tears? I thought for sure I would.
A week ago Wednesday, I got the results of my CT scan and MRI of my head. If you recall, I've been having trouble with joint pain and fevers. And I also got a lovely new symptom: a numb chin on the right side only.
My primary care doctor ran a battery of blood tests to test for Lyme, Lupas, Rheumatoid Arthritis and other things and they all came back negative of course. It couldn't be something we could easily treat. So that only left the scans from my oncologist as a possible explanation.
It seems that the cancer has progressed further in my bones (causing the joint pain), and the cancer got into my cerebral spinal fluid (causing the fevers). The MRI scan of my head showed two spots, which means it made it to my brain. My liver is still clear.
I had to have the doctor call Thom to tell him the results because I wasn't sure how much of it I was taking in. I can sit here now and type this as if I'm talking about the weather, but this past week has been hell for me. This bit of news hit especially hard because I thought I was doing so damn good. My counts were down, I was feeling good, so there was no reason to scan me before this. But once I told him about my numb chin, he got concerned. He's heard that symptom before.
If I let myself think about it, I get panicked. What does this mean for me?! How can it progress so fast?? How much time do I have?? Can't I catch a friggin break?? Thoughts flying around in my head, can't shut them off. This really really sucks.
And telling my mom was the hardest thing I had to do. I so want to be able to call her and tell her some GOOD news. So much for the weather thing, I'm now crying.
My doctor took me off my current chemo treatment of Avastin and Taxol and has put me on a new med: Xeloda. It's a pill, so I don't have to go into Boston every week. I take 3 pills in the am and 3 in the pm for 2 weeks, and then I don't take any pills for 1 week. After 2 cycles of this (6 weeks), he's going to rescan me and see where we are. From what he told me, the Taxol/Avastin combo did not cross into the cerebral spinal fluid, but this pill does, so it "should" get to the tumors in my head. If these pills don't work, we're looking at radiation of my skull. Great. You know the first thing I thought of when I heard radiation? My hair will not grow back in those spots and I'll have bald spots if my hair does grows back. Kind of vain, huh?
The main side effect from the Xeloda pills is a weird one. The thick skin on my palms and heels of my feet get red, painful and irritated. I bought a pair of Crocs in anticipation of my feet hurting and also because of my toe. Oh yes, my toe. That's another story.
Be warned, this next part is disgusting.
The big toe on my right foot got infected and was oozing, so I went to see a podiatrist. He poked around and recreated the oozing, so he told me that I have an infection under the nail. The nail is acting as a lid, keeping the bacteria contained, so he said that we had to remove the nail.
The whole thought of it was making me ill, but we had to do it.
He started numbing up my toe and while he was giving me the anesthetic, I started to get nauseous and light-headed and feeling like I was going to faint. He stopped and let me rest, gave me some crackers and soda, and told me when I'm ready we'll continue. Took about 25 minutes, but I felt better and we carried on. This time, my toe was mostly numb, so I didn't feel the needle. I refused to watch because I knew I would get nauseous again. He cleaned it all up and told me that the infection was only superficial, and once he got the nail off, it was all clean.
When I tell you this hurt like a son of a bitch, it did. I've been through some painful stuff (like kidney stones), and this was by far more painful. Had to change the bandages, and it would stick to my nail and I would have to pull it off and it made me see stars. I've finally crossed that bridge and it no longer sticks to the nail. Thank goodness. So anyways, the crocs are comfortable because they don't constrict my feet. They are not the prettiest things in the world, but they sure are comfortable.
Thom and my anniversary is coming up next week and for our anniversary, Thom made one of my wishes come true. He got me a Penguin encounter at the Mystic Aquarium in Connecticut. So on Halloween day, I get to spend some time with some penguins and hopefully hold one. I'm very excited about this. If you all don't know, I have this fascination and love for penguins. One of the things on my Bucket, er "To Do" list is to swim with penguins. So I'll be able to cross that off! I'm hoping to get lots of pics, so I'll post them as soon as I can. Thank you sooo much Thom, I love you doesn't even begin to express how I feel about you. And I'll get to share the experience with him, so that's just awesome!
A lot of people have asked if there's anything that they can do. Thank you. Right now I'm ok, but maybe in the future, I may need help with meals so that Thom doesn't have to cook all the time. Any maybe some chores. But that's not right now. You can all pray for me and send good vibes my way. I think there's a saying, "If God led you to it, He will see you through it." Or something along those lines.
Death has been on my mind a lot lately. Now, please don't think this means I'm giving up or anything, it's just thoughts that go through my mind. It's a pretty scary thought. I won't worry you all with my thoughts, but just that I have been having them.
