I do! I do!
Saw the oncologist this morning and all the news was very promising.
He said that the tumors in my liver are shrinking. He didn’t give exact numbers but said it was considerable. My liver itself was enlarged and was 25cm. It is now going back to it’s normal size and is now 19cm. The lymph nodes in the area that were enlarged have shrunk to normal size. No other evidence of disease has shown up. Lungs and everything else is clear and my blood work is going back to normal.
We will now do two more months of chemo and I’ll have another progress scan after that. He thinks that if I continue in this direction that I will go onto a maintenance program after that. I’m not sure of all the details but it’s basically less chemo.
He had mentioned radiation that last time we were in. Today he said based on the scans and talking with the radiation therapists, they don’t feel it’s necessary for me to do at this time. Too many risks and the chemo seems to be working.
I can’t put into words what I’m feeling right now. I knew in my heart it was going to be good news, but it’s still just solid to hear. It will make the harder days better knowing that it really is working.
Chemo was actually fun for me today. I enjoyed a celebratory Pepsi and MJ painted my nails. I felt it was well earned 🙂
Technically there is no cure for my cancer. The best that I can hope for is to shrink everything until it all goes away. At that point I will be N.E.D. – No Evidence of Disease. It’s a little frustrating that I can say that “I’m cured” but who knows? I pray every day for those guys in white coats sitting behind a microscope in a lab somewhere. That they will find that cure. That in a year or two I can be “the real deal” cured.
In the mean time I’m going to continue to fight the fight and get over all of this.
Let’s get a little personal here, shall we? I mean, I don’t mind sharing but it might be TMI for some people. Just warning.
Since I was in the hospital after our cruise I’ve had this biliary bag attached to me and I hate it. No, hate is too nice. I detest it. I loathe it even.
First of all, it’s big. I have to try and hide it and it makes the new cute shorts I got for my new littler body difficult to wear. The cords on it are kinda long and they either tickle or scratch me. Secondly, I can’t swim because if it. And that really pissed me off. I love swimming and it’s summer now, damn it!
I’ve had to create a little hook in the shower so I don’t have to hold it while I’m bathing. And let’s see, what else… well, it just sucks! It’s the one thing I have really whined about.
And so I will share with you what I’ve had to deal with for the last couple of months:
That thing on the left is my colostomy bag. I’ve had that since the first surgery and that’s not going away any time soon unfortunately. That mess on the right is all from the biliary bag. I’m supposed to keep it bandaged like that all the time and that’s the bag I’m holding up that’s partly filled with bile. Gross, huh?
And seriously, it’s a bitch to hide!
I met with the surgeon a couple of weeks ago and he said I can try turning the valve off to stop it draining into the bag and see if my gallbladder will start working again like it’s supposed to. If I didn’t get any fevers or severe pain, he would take the bag out for me. YAY!
So I turned the bag off and the next day I got stomach cramps. Severe enough to turn the drain back on. I was so bummed.
I waited another week and decided to try one more time. And it seemed to be OK. I went almost a week without any issues.
Two nights ago I was changing my clothes and noticed a smell. Not a nice smell, not a horrible one, just something odd. I didn’t know where it was coming from. And then I felt it. The drip on my leg. UGH!
The damn bag was leaking.
I’ve been using a safety pin to pin the bag up in my pants and it seemed that I accidentally poked into the bag part instead of the outside area.
I called my surgeon’s office first thing the next morning. He told me to call and said he would take it out anyway if I wasn’t having problems. I figured it wouldn’t be too big of a deal since he already told me that.
I guess the nurse misunderstood me because when his office called me back they referred me to the doctor who takes care of my colostomy. Since I didn’t know who takes care of what I called their office like I was told and waited all day for a call back. It was late afternoon by the time they called me back to tell me I had the wrong office. It was the surgeons office all along that was supposed to take car of it.
By the time I got a hold of them again my surgeon was at the hospital in surgery. I was advised to go to the ER. At a $250 co-pay, I wasn’t really interested in that option, but I wasn’t really excited about dealing with leaking bile all weekend either.
Luckily the nurse called me back and said that radiology would help me if I went down there right away. So I did.
I was hoping they would be able to remove the bag all together, but they told me they couldn’t without my surgeon’s orders and he was obviously a little busy.
So I got a new bag. Same size. Grrrr.
I’m hoping to have it removed this coming week.
And if it all goes as planned? Look for me in the pool or at the beach 😀
I spoke too soon on the hair thing. Doh!
I had been starting to lose more hair in the shower the last couple of weeks but nothing that was alarming. Until Monday.
I took a shower and this is what I lost…
Kinda freaked me out just because I wasn’t expecting it. I didn’t have any big bald patches anywhere but I figured I might as well just get it over with and shave the head.
It’s just hair. Doesn’t really bother me.
To be honest, I’ve always kinda wanted to shave my head but was too chicken to. Now that I had a reason there was a little part of me excited to see what it would be like.
I figured since I had to shave it, I might as well have some fun with it. I decided to rawk a hawk for a few days. Why not?
One of MJ’s co-workers has some left over hair dye so I’m going to dye it and rock that look for a few days before I have to shave the rest. It’s not falling out too quickly to have a few days of fun.
My friend Mike came with me to chemo last Tuesday and took this pic:
So far I don’t mind the hair situation. I was feeling a little sad since I finally lost all that weight and can wear cute girly clothes now. Oh well. I’ll just have to find cute matching hats and scarves. Otherwise it feels pretty great in the hot weather.
In other news my mouth sores got pretty bad but are finally starting to clear up. Just in time for another round of chemo! And for some dumb reason I’ve found myself addicted to Sea Salt & Vinegar Chips. Yeah, just what you want to slather all over open wounds. Right? I know. I’m nuts. I can’t help it though. I guess it’s like eating suicide hot wings. I’ll just throw a handful in my mouth and cry as I chew. So tortureously delicious.
I’ve changed my chemo regiment. Again.
I was starting to get these blister sores on the bottom of my feet. My oncologist said that they would get worse and he wanted to reduce the amount of Xeloda (the oral chemo) I was taking.
I told him about the 5k I just signed up for and asked if there was any way of preventing the feet sores. He suggested that instead of the oral Xeloda, that I switch to the IV version called Fluorouracil or 5-FU. So now every 2 weeks I get big chemo. Once I finish with the big chemo, a nurse comes and hooks up this pump that I carry around for 2 days. This last week I went to the fair with it.
It’s not as bad as you might think. Not ideal of course, but I think I like it better than having to remember to take pills every day.
With new chemo comes new side effects.
I’m not sure exactly what’s new and what has just gotten worse.
My feet have started to heal up already and haven’t been bothering me too much. My hands are pretty dry and sensitive. Fingers are a bit cracked.
I’ve started having pretty severe sensitivity to cold in my hands and mouth. Anytime my hands get cold I get a prickly sensation like if my arm was a sleep and it’s waking up.
If I drink something too cold it feels like I’m drinking needles. Fun huh?
I think the worst thing I have right now is new mouth sores. They’re bigger than the ones I had before and a little more painful. You can see the one on my lip in the picture below.
You can also see the breakout on my face from the Erbitux. I also have that on my chest and back.
Considering I’m in my 4th round, I’d say I’m doing pretty awesome. I only have slight nausea when I get it and while I do get fatigued, I’m still keeping up and able to do things.
While it might seem to suck, and sometimes it does, everything is actually quite manageable. And I still have my hair 🙂