Home

I know for a fact that I'm home because I ended up spending the afternoon in the hospital. They drew another two litres of fluid off of my right lung again. Although when I got home I took a little nap and the phone rang and I had no idea where I was...home, hospital, Mankato??? It was strange.

Tomorrow I have a gastroscopy in the afternoon. Those drugs knock me out so I'm sure I won't be bloging then.

Head is very woozy now and stomach not quite right. So I'm signing off. More at a later date...

A Little Off

Here I am, still in MN, feeling a little "off." Although better today, I've had a rough couple of days lately. Hopefully tomorrow is a good day since we'll need to be driving home.

The trip here was good with Dominic doing the 4-lane driving. I imagine we'll do the same thing on the way back.

We've watched all levels of baseball while here. Mark had his games on Mon & Wed with his daddy coaching. We went and saw the Mankato Moon Dogs play last Tuesday. And we've watched Twins ball on TV.

We also celebrated my Aunt Midge's 50th Jubilee. It was quite the nice celebration. And while I felt pretty crummy that day it was nice to see so many aunts, uncles and cousins. Once again I am amazed at how many people tell me they read my blog. The corresponding prayers are greatly, greatly appreciated!!

Wed brings another shot of Aranesp, and Thurs holds a follow-up gastroscopy. I hope that nothing unusual shows up. I have had bad problems with the blood clots in my mouth again though. No...I don't know why, or what causes them. I just know they have me awake pretty much every single hour at night. The lip/chin numbness is still there and has not changed at all. Unfortunately, I've bit the inside of my lip several times now and it's pretty raw. That I can feel!

Thank you for your continued love, prayers, and support. This "trial" is made somewhat easier knowing I have the gift of family and friends by my side.

Minnesota Bound

I am going to be leaving again for MN on Saturday for another 10-day visit. This time Dominic is going with me so we'll be driving. Brian is too busy to be able to go with us, or to be spending much time at home during the days or evenings. So once again the change of scenery and time with my family will be really nice.

I had my one month check-up yesterday with Dr. K. We did a round of Zometa (bone strengthener) since I've been having this discomfort. We also increased the Fentanyl dosage in my patches. Hopefully all of that will help to ease the pain. Still no solid explanation as to why I have the numbness in my lip and chin. Dr K said it could be from a cancer lesion pressing on a nerve, or it could be Bell's Palsey. It hasn't gotten any worse, but it hasn't improved any either. I also have some numbness/tingling in the finger tips of my left hand.

I may or may not get around to blogging while in MN. That remains to be seen. In the meantime, I hope all of you are well and happy and enjoying your summers!

What now?

I woke up yesterday morning with the left side of my lower lip and the left side of my chin feeling mostly numb. They're still that way today. I've got a call in to the clinic to see what they think this might be. No pain, no tooth ache, no discomfort, no obvious trauma. Just this very odd numbness. Fortunately my face looks normal and I don't have a fat lip or sagging chin or anything.

I think it may soon be time to have the fluid drained from around my right lung again. I'm not really short of breath, but I do hear some faint wheezing sometimes. I'll probably hold off until I see Dr K next week though to get something set up. Since I've managed to go so long this time with draining, I don't think we'll have to resort to the very involved chest tube and can just drain it like we did the last two times. I'll let you know what happens with that.

I had a pretty good weekend. Got out of the house a bit with Brian on both Saturday and Sunday. I'm kind of sick of the clouds though and look forward to the next all/mostly sunny day to arrive.

Both my mother and mother-in-law have birthdays at the end of this week so, if you're so inclined, please say a special prayer for each of them.

Have to go flip the laundry from the washer to the dryer now. Big excitement for my Monday!

I hate waiting around for this phone to ring, but I really need to hear something from the clinic. I'll let you know what they decide this new strangeness might be from...

No Suckers

My dad was collecting money for a raffle his men's club was having at his church. Most every day I was in Mankato we would make a bank run and, big kid that he is, my dad would come out with suckers for each of us. It made me feel like a little kid again to be out running errands, just me and my dad, and being treated to a sucker from the bank. How sad on Tuesday when I ran to the bank in Sheboygan - by myself - and didn't get a sucker. Yes, I'm home.

I had a really good week with my parents. We didn't do anything major but it was nice to always have someone around and someone to eat with and play cards with and just sit next to and read the paper. My parents are just plain wonderful and I plan to go back again soon when the walls close in again. As a bonus, I got to spend time with all three of my brothers, their wives, and Mark and Joey. I also was able to visit with my Aunt Midge. It was just the perfect week for me.

While I was there I did battle a low grade fever for about a day and a half. When I got home I thought it was all in my head that I was feeling down and out, but it turns out my blood was messed up again and I ended up in the hospital yesterday for a blood transfusion. I didn't get home until 10:00 last night. Back to reality!

I have decided that I'm probably only going to blog once a week now. My guess is that I'll try to do it on Sundays or Mondays as a re-cap of the previous week. There's just not enough going on in my world to warrant anything more frequent than that. It will also save all of you from checking every day and finding nothing and wondering what's going on.

Time to go pop a pill or two to try and control another fever that's going on right now. It should help with some of these aches I'm feeling also. It may be time to increase the Fentanyl dosage for pain as my hips and legs have been bothering me more and more lately. I'll see Dr K in two weeks and discuss it with him at that time.

You're all in my prayers. I hope I remain in yours as well.

Where's Carol?

I'm not at home. I'm not in Sheboygan County. I'm not even in the state of Wisconsin. I had an opportunity to come to MN with my folks and I jumped at it! I just had to get away from the walls that were closing in on me and the long silences at home being alone all day long. Already this is a great improvement. I really haven't done much that's different here, but the scenery is changed. They have a big, bright window in their living room I can look out and watch traffic go by and hear neighborhood noises and watch the silly chipmunks scurry by. I don't have any of that at home. We're a lot more "private" living where we do than I ever really realized. I'll be flying home on Memorial Day to be reunited with my guys.

I've had some problems with my legs recently. In fact, they gave out from under me one evening. I don't know who it scared more...me, or Deb and Amy who were with me at the time. I haven't had another incident but I am constantly aware of how they feel now and am extra cautious on the steps.

Graduation weekend in Beloit was really nice with my family all together. I'm very thankful that it all worked out and I was mostly feeling up to all of the activities. There was still napping involved and I was worn out by the time I got home, but it was all worth it. I also was able to see my brother-in-law, Anthony, graduate the following weekend as part of this trip to MN. It just worked out since I was traveling with my parents.

It was 80 degrees here yesterday with a nice breeze blowing to keep the air moving. It was a perfect day. I was even comfortably warm (while everyone else was hot). Today is supposed to be similar, but with a slight chance of rain. Nephew, Mark, has a program at school tomorrow night which we're going to try to attend. I ran a bunch of errands with my Dad yesterday and that was nice. Even here I still need to get out of the house.

So I guess that's about it for now. My tumor marker number is up to 944, but no one seems too surprised by that since we're not doing any treatments right now. I am getting a boost for my red blood cells every other week with a shot of Aranesp. I just wish I would start to get some of my energy back...soon!

Have a good week everyone and a safe holiday weekend. I'll check back in once I'm home. Please keep the prayers coming my way. I need some strength and energy and peace of mind at home.

I Feel Good!

That's all. Just wanted to post something 100% positive! I feel good today, the weather is beautiful right now, and all is well in my corner of the world. Hope you are feeling the same!!

Loooong Weekend

Yes, it was long. Why? Because I was stuck in the hospital from Fri at 3pm until about 9 this morning. I developed a fever of 103.7 on Friday and I couldn't get it to come down. So they admitted to the hospital to get iv antibiotics. I was really ready to come home yesterday but they made me stay over one more night.

NOW I need to start the upward trend again and feel like a million bucks by the weekend. I just can't miss out on this family affair that's coming up!

I'm very sleepy as I did not sleep well at the hospital at all. There's definitely a nap in my future this morning/afternoon. At the moment the sun is shining and it looks beautiful outside. Nice to come home to that, rather than rain and grey skies.

I must thank my friend, Kay, for her consistancy in sending me such beautiful and comforting cards. She sends something at least every other week, if not every single week and I always look forward to that. Thank you Kay!! You're so wonderful!

And thank you, also, to Amy and Carol who each came to visit me in the hospital. While they were discouraging me having any visitors besides Brian and Dominic, these two both stopped up to see me and were most welcome and appreciated. So were the phone calls from family and friends. It helped to make the time go a little quicker. I'm sorry I don't always call and let folks know when I'm in there. Most often I don't have my list of phone numbers with me, and I need to get a long distance calling card to reach any of you who are further away. I'll try to remember to purchase one of those next time I'm in the store.

Ok, all for now. Really, really sleepy and the fingers aren't typing so well. I'm keeping all of you in my thoughts and prayers!

Lost!

I seem to be missing my ankles, and I have a lot more foot than I need. Things have swollen up with retained fluids now and I have elephant legs! It's terrible. Fortunately, it isn't uncomfortable at all, but it is a challenge to get my shoes on.

I spent Monday afternoon at the clinic with my parents where I received iv fluids and they did more blood work. I did have a "minor" reaction to the transfusion, so I'm not sure what that means for any future blood I may require. I'm just extremely pleased to be past the worst of it all.

I am feeling so much better today. In fact, I even ventured out on my own in the truck to go pick up a prescription at Wally World. It was a major deal for me. I was wiped out by the time I got home...but that store is huge and I needed other things from one end to the other. There was a definite sense of accomplishment that came with the trip!

In addition to my parents being here Monday afternoon/night, my sister, Sue, and her little boy, Owen, were here as well. It was so great to wake up Tuesday morning and have other people in the house. I can't even begin to explain what a difference it made in my mood and my enjoyment of the morning. Thank you to the four of you for being here for me!!

Now the push is on to just feel better and better so I can have energy and oomph for our family get-together over Mother's Day weekend. My oldest nephew, Alex, is graduating from college, and another nephew, Zachary, is celebrating his birthday. It should be quite the party weekend and I can't wait...especially after being cheated out of MN this past weekend. Please keep me in your prayers that this upward trend continues!

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.

No Place Like Home

There's no place like home, especially when you haven't been here for a few days. Even more so when those days have been spent in the hospital.

I woke up Wednesday feeling just a little more crummy than usual. Then I started throwing up blood and had to have Brian drive me to the E.R. Thank goodness he was home! We got to the hospital around 11 or 11:30 that morning and by early afternoon I was admitted. I had ruptured some varices in my esophagus (you may remember they came up as a potential issue at the end of December). So on Thursday we did the same scope procedure we had done back then and Dr. Sokhi banded them off to stop/prevent further bleeding. It left me with some sharp pains just below my sternum.

In addition, my breathing had become labored again. Even though they drew a litre of fluid off my lungs last Thursday (the 15th) there was more fluid built up again. This time they got 2 1/2 litres! The doctor said it's the most he's ever drawn. If the fluid comes back again they will have to do a more involved surgical procedure that involves a chest tube and the injection of some talc to sort of close off the space that allows the fluid to build. We'll cross that bridge if/when we come to it.

I was finally discharged from the hospital this morning (Sunday, the 25th). It was a long several days and my room seemed to shrink by the hour. All seems to be fairly ok right now though. Please keep praying that it remains that way and that this is the end of the fluid build-up. The chemo can potentially keep it from coming back.

I'm scheduled for shots each day again this week and for another chemo treatment on Wednesday. I will say that it was reassuring to see a different oncologist who agrees with all that Dr. K is doing. I trust Dr. K's judgment and his decisions, but there's no harm in hearing the same kinds of things from other doctors. In this case it was from my original oncologist who first treated me back in 2001. He happened to be the doctor on call this weekend.

I guess that's all for now. Thank you for the many prayers, visitors, flowers, hugs, cards, gifts, poems and drawings! And thank you for all of the love!!

Keeping it Brief

The results of the lab work on the fluid from around my lungs showed NO cancer cells! This is very reassuring. We need to now see what the chest x-ray shows next week to make sure there are no spots within the lung itself.

Keysha has run away twice now since Niko was put to sleep, but was returned by kind neighbors both times. She's one strong dog to have managed to break out of her pen, even after Brian did some strengthening of the wire. Her grieving seems to be getting a little better as she didn't spend the whole day howling today. Brian has been well-distracted by her, I think.

All for now since my tummy is rather upset today.

Sad, Sad Day

Poor Brian had to take his beloved Niko into the vet this morning. Niko would have been 13 this June and had developed some kidney problems, as well as troubles with his back legs. It was "time." Niko was Brian's best friend and this was an extremely difficult decision for him to make. I know there are many, many of you who can relate to his sorrow.


On a more positive note...my procedure went extremely well yesterday and was far less uncomfortable than I had feared. They withdrew just over a litre of fluid from around my right lung and now we await the lab results. That news should be available some time early next week, I hope. The whole procedure took less than 20 minutes and all I really felt was one tiny needle prick and just a small amount of pressure when we were nearly done. All of the staff was exceptional and really put me at ease.