3 Key Factors

I managed to get some sleep last night. Factor number 1 that aided this "miracle" was a doubling of my dosage of the Fentanyl (pain patch). Factor number 2 was the way I finally positioned myself; head and shoulders propped this way, knees propped that way, on the couch in the living room. Factor number 3 was my very wise husband. I must have fallen asleep between 10 and 10:30 and when Brian was ready to turn in he just left me there, with the light still on and everything so as not to wake me. I slept until 2-something, when it took me a minute to realize where I was. I was going to get up and go to bed, or at least turn of the light, but I fell right back asleep instead. Then I awoke again at 4:30 and did go to bed at that time...PAIN FREE! I slept until 10:30 this morning!

Yesterday was a tough one. I don't think I've writhed in pain like that since I was in labor. The Fentanyl is definitely making my head a little floaty again, but it's tolerable, and the pain is gone again, so I'll learn to deal with it. I do not want any more days like yesterday. A little queasy still today, but that's the chemo pills. Only ten more pills to go for this week...

I thought I was doing so well

After my last post I managed to sleep quite soundly every night...until last night. I had such pain in my legs all night that I only managed two hours of sleep when I first went to bed, and then I was up the rest of the night. My hips, femurs, and knees hurt very badly. I can barely walk without feeling like I'm going to fall over. Once again, I just can't find a comfortable position.

I had another treatment last Friday and I'm back on the chemo pills this week. I'm sure all of this lends itself to my pain. But I was feeling relatively human, and even went to work for a couple of hours yesterday. Today I'm both nauseous and terribly uncomfortable...not to mention tired!

I should have blogged last evening when I was doing better so this entry would be more "up."

My treatment on Friday was fairly uneventful. But as I was telling the nurses and the Nurse Practitioner about Dr K putting me on the Aleve, the Nurse Practitioner said "He must be thinking 'tumor fevers' -- he is just so smart! He makes me realize I have a lot to learn yet." I really like the N.P. (Cindy). And it's nice to know there's really a name for the fevers and the night sweats and that they really can be a good thing. That's what I keep telling myself about the pain in my legs now. It must be the meds attacking all the cancer in those areas. I hope I'm right!

My mailbox continues to overflow with cards of all kinds from a wide variety of people. I love it! Thank you oh so much for brightening my days!!

It even hurts to count sheep

It's now about 2:30 in the morning and I haven't slept a wink yet. It's disappointing because I was fairly convinced that the little blue Aleve was my magic pill. Since starting to take it on Monday it has relieved the nausea and I haven't heaved or thrown up once! And it had also seemed to help with all of the body aches that I was having in my joints, lower back, shoulders, etc. But now tonight I am just so uncomfortable and I can't find a good position to sit, stand or lay down. You would think that between the Aleve and the Fentanyl patch I would be well covered in the pain area, but this is a rough night.

I feel clammy too, and sense that as soon as I do manage to fall asleep that the night sweat will hit soon. I'm down to only one episide a night, but it's still happening. At this point I don't care...I just want to sleep!

Sorry for the Delay

I realize many of you were checking for a posting yesterday to find out what I found out. I'm sorry I didn't get to the computer.

When I called the clinic in the morning they were able to tell me that the blood work had come back negative for infection. I guess that's a good thing, right? So what's the problem then? Since I was still having the sweats they decided I should come in and see Dr K. I had a late afternoon appointment with him. First words out of his mouth were "You're spending too much time here" and I said "I KNOW!"

The new theory is that the fevers and night sweats are a result of the meds attacking the tumors in my liver, and this is my body's way of responding. So, kind of, it's a good thing that I've been feeling the way I have...maybe...if the theory is correct. Dr K took me off the antibiotics which were making me more nauseous than usual. I am now taking Aleve twice a day to try and reduce some inflamation. I see Dr K again on Friday and we will re-evaluate the situation then.

Since I was showered and dressed and already on the north side of Sheboygan, I decided to go in to work for a little bit yesterday. I only lasted about an hour and a half. But it was good to be there, sitting in my chair, answering my phone, plodding through emails, and seeing many smiling faces.

Then I came home, exhausted, and napped for two hours. Hence the lack of blog time yesterday. I was just uncomfortable and groggy and in no mood to sit in this particular chair.

I received lots of cards and hand-written notes in the mail the past couple of days. What a great, great treat! (J&B, I told Brian I need a pig now, but he doesn't think it's such a good idea. lol) Everyone has been so great about keeping in touch with me and it has really helped me get through these rough days. I just can't express my gratitude appropriately.

Be well, and have a great day all!!

To Quote...

...the late, great Gilda Radner: "It's aaaalways something!"

I told the nurses at the clinic today that it just seems impossbile for me to stay away from there for two full weeks. That would mean my life was going smoothly and everything was fine. I had no appointment today. I have no appointment until a week from tomorrow. But after two nights of the most intense, bizarre, soaking wet night sweats I thought I better call in and make sure this wasn't a big problem. They told me to come right in. On top of everything else, I now have an infection of some sort, somewhere in my body. The first thought is a Port infection, just because of the timing, but that doesn't look infected. We won't know specifics until lab cultures are back, probably on Monday. In the mean time they have given me an antibiotic. I'm running a pretty high fever of 102, so my brain is a little fuzzy.

What next?!?

Shocker

I thought I was prepared. I thought I knew what to expect. I thought I was giving myself enough extra wiggle room to be ready for whatever I heard. I was wrong.

In my July 22 Blog my tumor marker number was at 1474. With the news of the spread to my liver I knew we were looking at a jump in that number to at least 2000---I figured 2500 was probably more like it. I even considered the possibility that it may have doubled to 2948. I was not prepared to have skidded way past the 3000 mark. 3868 is the new number.

I guess that explains why I feel so crummy still. I don't like it! I don't like it at all!!

Rah Rah

I'm supposed to be at the Packer game right now. Obviously, I am not. Feeling really rough this weekend. Poor Brian had to hit the grocery store this morning before he could head out of town. It's a good thing he's so capable!

The port isn't too terribly uncomfortable, except when I roll over in the middle of the night. Tummy troubles keeping me close to home.

What is with these autumn-like temperatures? And where is the sunshine? A little less gloom would be nice...

Surprises

Sometimes surprises can be a good thing, sometimes they can be a bad thing, and sometimes they're...well...just unexpected things that don't really sway a person one way or the other.

First surprise came last evening when I was much more aware of my surroundings than I thought I would be while they implanted the port. I was numbed up well enough, but I knew exactly what was going on the whole time. I was suprised to be so wide awake. It was a great bunch of nurses who did their very best to keep me laughing though. The doctor himself had a great bedside manner and spoke to me a couple times during the procedure. It was the assistant, however, who gave me my next surprise. Words you don't want to hear while lying vulnerable on a table: "I've never seen it do that before!" EXCUSE ME?! Turns out the porta-cath had turned kind of upside down like. The doctor had seen this before and wasn't at all thrown by it. There was not much pain involved, some discomfort now but nothing unbearable and it will pass pretty quickly. It has, after all, only been about 24 hours.

The next surprise came today during my appointment with Dr Kumar. We made some changes to my treatment plan. Dr K met with what is called the "Tumor Board" which is a group of all the local oncologists. They get together once or twice a month and discuss cases and get input from one another. This input, along with advice from Dr Vogel (in Florida), has led to a new course of action. Biggest surprise is that we did not start the Taxol today. We are, instead, going to continue with the Xeloda for another couple of rounds. The feeling is that with only two rounds of the Xeloda in my system, we haven't really given it any time to work. In terms of "quality of life" it is a better chemo for me to be on than the Taxol. Neither one will increase longevity of life over the other so the idea is to keep me more comfortable longer, if we can. The dosage has changed on the Xeloda and I'll take only four pills a day now for just one week, take a week off, then be on it again for a week, etc. We'll see how my system handles that. If we see after another two or three rounds that my tumor marker numbers are not coming down, then we can always switch to the Taxol at that time.

We did start the Avastin today. This is a drug that will, basically, cut off the blood supply to the tumors. One side effect can be increased blood pressure so, of course, when Brenda came to check my blood pressure and it had gone down, we all shook our heads and laughed. Only me!! She already thinks I'm an odd case. lol

In terms of the liver biopsy, we have decided to wait a little bit with that and see how this other treatment goes as well. There is only a very tiny chance that my cancer has changed in type wherein I would then be a candidate for a drug called Herceptin. When we did a "double check" with the bone biopsy in 2004 the cancer had not changed, so it's unlikely it has changed now. The surprise that came with this one was that another option is to do a laproscopic procedure wherein they would look at the entire abdomen and visually check to see if there are signs of tumor anywhere else around my digestive system that might explain the nausea/heaving. They would then just do the liver biopsy at that time.

Let's see...what else? Ah yes; no more Procrit shots. They're giving me something else for anemia now that can go in my port and I only need it every two weeks instead of every week. Surprise! One more thing for which there will no longer be a needle poke required.

So now, barring any unforeseen changes, I won't have to go back to the clinic for another two weeks! Now THAT's a surprise!

I don't know about you, but all of this information has worn me out, so I'm going to stop here for now. I feel mostly ok. Getting through the port procedure last evening was a huge stress reliever. I was not looking forward to that one at all. And today seemed to turn out better than expected as well.

And when I woke up from my nap this afternoon --- surprise!---there were some fresh flowers that had been delivered!! Thanks Oregon!

May all of you have stress-free, happy, healthy weekends!