Huge Dissapointment

I'm supposed to be in MN right now but plans fell through when I ended up in the emergency room early yesterday morning. We still don't know what the exact problem is, but it seems likely that I had a bad reaction to the blood transfusion I received on Wednesday. The other possibility is an infection of some kind, but we have to wait for blood cultures, etc., to see what they show.

I was sooo looking forward to seeing Mighty Mark and his family this weekend...not to mention just getting out of the house. Hard to even enjoy the warm, sunny day today when I have such a high fever.

I think the worst part of this is that we had just made the decision to stop chemo treatments for a while so I'd feel decent, and now I feel like crud anyway. It's always something!

On a totally unrelated note, my hair seems to be coming back slowly. It's very straight and very, very gray. There's not much there to speak of, but I can still tell there's more salt than pepper.

My guys are out tonight so I guess I'll go curl up on the couch and watch some Brewers.

What Was I Saying?

Oh yes..."semi-regular"...

I was back in the hospital yesterday to get another blood transfusion and some iv fluids. Then today I seemed to have a bit of a reaction to the blood and ended up with a fever. That seems to be under control now with the good ol' extra strength Tylenol.

After a couple of rough days this week I sat down with Dr K yesterday and we decided to stop chemo treatments for a while (3 months?) to let my body try to do some "healing" on it's own. My system doesn't seem to be able to take much more and we've beat up my bone marrow pretty good. The hope is to start having some days of feeling more human, potentially enjoy the summer a bit more, but keep monitoring things with monthly appointments at the clinic.

In the long run is this the right decision? There's no way to know. BUT, the idea of feeling 'good' is so appealing right now that it's a chance I'm willing to take, and Dr K and other staff members seem to agree.

So while I'll continue with all my home meds, there won't be any actual chemo drugs administered for a little while. The biggest immediate concern is whether or not the fluid will come back around my lungs. Time will tell...time will tell a lot of things. But for now I'm optimistic that there will be some happy days ahead when I feel like I'm able to leave the house for places other than just the clinic or hospital. Maybe even a long-awaited visit to Muth!

Off to MN this weekend for Mighty Mark's first communion. High hopes of getting past the fever issues and enjoying their predicted 80 degree high temp with sunshine!! Say a little prayer we're able to hit the road without a problem.

Semi-Regular

I recognize most of them, and most of them recognize me. That's how it works when you become a semi-regular patient at the hospital. Even if it's on an out-patient basis. Why do I bring this up now? Because I spent most of my day in one of their semi-comfy beds yesterday.

In the morning I had a bloody nose that wouldn't stop and bleeding gums that wouldn't stop. I was a mess. Add to that some kind of funky vision problems and it was time to call the clinic. They ran some tests, did some basic stuff, then sent me off to the hospital for a unit of blood and some platelets. Dr K also added another drug to my daily regime, something that will hopefully get all this bleeding under control. Unfortunately it's 2 pills, 4 times/day. That's a lot more pills to start sending through my system. And I imagine there will be side effects to one extent or another.

The sun is shining here again today. Time to ride along with Brian to go get some fresh fish for the pond. Ours did not fare too well this past winter. A road trip may do me some good...

Have a great weekend, everybody!

Full House

I can't believe a full week has gone by since the 'gang' stopped by. Last Thursday evening the doorbell rang and in walked 11 close friends (both adults and children). Brian knew they were coming but it was a complete surprise to me! What a great treat. "Thank You" just seems so inadequate sometimes...but I truly am thankful for Dave & Linda, Deb, Jeff & Aaron, Ed, Amy, Andrea & Ellis, and Sara & Rachel. Missing from the group were Tom, but also Dave and Faye. This is a core group of friends that I became part of after meeting Brian. What fantastic people each and every one of them is.

Over the weekend we actually got to go up and see Dave & Faye, just north of Antigo. The weather was nice and I felt half-way decent the whole time. Three weeks off of treatment will do that for a person. I knew I needed to get away from here. I didn't realize how badly I needed to get away until I was actually gone. It was tremendous therapy. And our hosts were so accomodating and wonderful.

I did come back to treatment on Monday and have been feeling crummy since then. Yesterday was especially bad, but today is an improvement. Could it be today's sunshine is helping to improve both the mental and physical side effects? Hard to say.

We have an appointment this afternoon with the attorney to update our wills. It's something I've been meaning to do for a year or two now, but my stay in the hospital last month made me realize it's time to be responsible and get it done so I can get it filed away.

Time to try and eat something again and hopefully not get the belly churning. One of the pills I take needs to be taken with food. Tough to do with no appetite and no guarantee it's going to stay down.

Hope the sun is shining wherever you are today!

419!

Need I say more?

The tumor marker number dropped back by over half after starting this new chemo. So, obviously, it was the right decision. It would be great to cut it in half again over the course of this next month. Then...maybe...we could eliminate some of these other drugs that leave me feeling so lousy.

Like most of you, we have a cold, snowy, blowy day here today. I'm not liking it at all!! We could stand to be blessed with sunshine and warmer temps. This has turned into an incredibly loooong winter!

Too Low To Go

Numbers were on the low side today so we could not proceed with treatment. I wasn't too surprised by this since I haven't been feeling very good. No transfusion is necessary at this point yet, though, so that's a good thing. I did get the Zometa and Aranesp and a shot of Neupogen. The Neupogen I'll receive each day this week and then we'll check labs again on Monday to see if we can proceed with treatment at that time. I'm also back on a pill called Femara that I took about two years ago. It's one of those things where it can be revisited and maybe have some positive results again. It acts as a hormone inhibitor, similar to Tamoxifen.

While I still may have a little fluid around my lungs yet, my breathing has not been a problem so we're not going to do anything "dramatic" at this time. That's a big relief to me.

I want to thank June for her nice long letter telling me of her trip to Mexico. It was just what I had hoped to receive when I put out the request. Thanks to Wendy, also, who had photos along on Easter to share. What fun!

I did manage to get out on Easter for both church and to Brian's mom's house. It was good therapy to be surrounded by family and just watch all the goings-on. I didn't feel very good, but it was worth it to me to not sit at home.

All for now as it is nap time. I hope all of you had wonderful, joy-filled Easter celebrations!

I'll probably blog again tomorrow with an updated tumor marker number...

First Try

I am pleased and proud to report that Dominic passed his road test first try yesterday! Sure, he lost some points, but still passed. It's a relief cuz it's one less hassle to deal with.

Feeling fairly yucky today. May have to break down and call the clinic this afternoon yet or tomorrow. I hate to do it, but I'm not enjoying my "off" week as much as I'd hoped...again. It's just always something!!

So far my version of spring cleaning has been to clean out two drawers and all of my purses. Now, granted, this took me three days to accomplish, but it's still a minor success on my part. I found lots of spare change in my purses. And I threw away lots of garbage in my drawers (like receipts from Xmas '05 --- that kind of thing). Next will hopefully be my file cabinet, but that task seems quite daunting. It's definitely on hold until I have a better day again.

I'm back to having lots of bloody noses and, even worse, blood clots in my mouth. It greatly affects my sleep at night. Obviously this is chemo related again. I'll have to bring it up with Dr K next week.

This cold, blustery day is doing nothing to help my mood. The wind gusts are terrible, but at least the giant snow flakes have stopped swirling around. (Oops! I take it back. Just looked outside and they're back in the air again.)

Going to try and take a short nap now...

Computer Problem Solved

Hi Folks. Sorry to have not been in contact sooner but our computer was misbehaving. Thanks Deb for the solution! (I won't go into the easy fix for fear of embarrassing myself.)

So anyway...I had a treatment last Wednesday. This was the second round with the new Navelbine chemo drug. I went without the steroids this time and managed to sleep that night with no problem. I've had some tired and queasy days, but no actual nausea. So while I still feel fairly crummy, it could be a whole lot worse.

We did a chest x-ray again on that Wed morning and there was a little bit of fluid that had returned around the right lung again. For now we're just keeping an eye on it. The hope is that this chemo will do it's thing and prevent that fluid from building up. My breathing is the best indicator and so far I haven't had a problem taking a deep breath. Since I don't want to have to undergo any kind of surgery, let's all pray that the fluid stays away.

Dominic had a great week in MN over his spring break! Thanks to everyone there for entertaining, transporting, feeding, and playing with him. Tomorrow is the big day of his road test. Keep your fingers crossed! This Mom isn't as optimistic as she'd like to be.