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.

Jitterbug

As you can see by the post time down below, this is not a good time for me to be up and about. Especially because I have not managed to catch any Zzzzs at this point. This darn treatment today has left me feeling all buzzed up and jittery. I can't take much more of this. The steroids left me eating all kinds of junk tonight and now I don't know if the tummy is bothering me cuz of that, or cuz of the chemo. The Kytril helped settle the belly a bit, but it hasn't made me sleepy enough to be able to lay down for even 10 minutes straight!

So here I am; typing, typing, typing. I'm hopeful this will work out some of those jitters I feel. Definitely got the jimmy legs going again tonight.

Those of you who have vacationed recently (past 3-4 months), please let me know how your trips went! Technically, Brian and I should be in Mexico or Punta Cana this week and I'm missing that annual trip very much. I'm hoping to live vicariously through your vacations instead. This is the first year since we've been married that we haven't gone away.

Thanks for your quick comments on my last blog entry, KB. The pic of my liver was encouraging for sure, but the fear now is that the cancer has spread to my lungs. We were reasonably certain the Avastin was helping the spots on my liver to go away and the scan seems to have confirmed that. I never had any great degree of discomfort when Dr K pressed on my liver so we know we caught it early there. As far as Survivor goes; for those of you who don't know, yes, I am hooked on that show. I watched it at Sue's last week but I don't think the previews for this week really stuck with me. Thanks for the update on the buffs and the shake-up. It could make for much more interesting tribes now.

For you pray-ers out there...please send up a few for my uncle and aunt, Jim and Kitty, who both managed to land themselves in the hospital recently. Also, my aunt Ruth who had recent heart surgery. All three seem to be doing pretty well and are home recouping. And while you're at it, my sister-in-law, Kate's, dad is undergoing some health issues and has conflicting opinions from some doctors on whether or not he has cancer. The not knowing things is the worst...how does one deal with a conflict like that?!? At least my 2nd and 3rd opinions at UW-Madison Hospital and at the Mayo Clinic all confirmed what we were being told here at the Vince Lombardi Cancer Clinic.

What a great day here yesterday with a high temp of 68 degrees on our deck in the sun. The wind was brisk and so it didn't necessarily feel quite that warm to me, but the snow is practically all gone now and even with the temps back down in the 40s today, it was still refreshing to be able to walk to the end of my driveway yesterday and not feel chilled to the bone. (Granted, I was wearing a turtleneck, sweatshirt, and corduroy jacket, but I was comfy.)

Oop, there's another big yawn, but the legs are still bouncing up and down yet. I think I'll iron my bandanas that I washed earlier today. I'm trying to do quiet things that won't wake the men-folk.

My 2 1/2 year old nephew, Owen, was here last evening. I didn't see much of him because he was all about having his private play time with Dominic. But he came upstairs a few times to sort of check in. I had my hat off most of the evening and the first time he just kind of looked at my head while he was talking to me, paused ever so briefly, but kept on talking. The next time he told me "you have beautiful hairs." It just made my night cuz he has no clue why my hair is practically non-existant or that that was the sweetest thing he could possibly say. What a kid!

I think that's all the typing for now. As I said, I think I'll iron now, but I don't know what I'll do after that. The print in my book is too tiny to try and read at this hour, I've already discovered. I have no desire to watch 'paid programming' and there's little else on at this hour. Much too late too call any of you for a chat, but could almost call some of you early Muth employees who might be about ready to wake up this morning. I'm not banking on much sleep before my procedure this morning. Have to be at the hospital by 10:30am, can't eat anything after 8:30am.

Well, thanks for lending an eyeball to my rambling typing. Hopefully will sleep better tomorrow night and you won't really hear from me again until we have the results from the fluid samples. No date set yet for the x-ray. Have to call and get that arranged.

Happy St. Patrick's Day (coming right up)!! I'll have to wear my fun green party hat from Mac and KB. Hope you're all snuggled in tonight and sleeping like rocks.

Love to all

Bad News - Good News - Bad News

Bad news: Tumor marker number is up over a thousand again to the tune of 1092.

Good news: CT scan shows the spots on the liver seem to have all but disappeared.

Bad news: lots more fluid around the right lung and I will have a thoracentesis done tomorrow to drain anywhere from 1 to 2 litres of fluid. They'll run some tests on the fluid they draw out and I should have those results in 2-3 days. The fluid is not in the lung itself. It is in the chest cavity surrounding the lung. I'll have an x-ray done before my next treatment to see what shows up (more fluid, spots, anything).

I did have treatment today. We stuck with the Avastin, but I am no longer receiving the Taxotere. That was switched to something called Navelbine now. (Oh goody...a whole new set of possible side effects.) I'll let you know how this one works out for me in time. The plan is to continue with treatments every other week, now on Wednesdays.

Sorry if I'm not posting as often as some of you might like. When I have a crummy day I tend to not have any desire to sit and type. And I've had a lot of crummy days lately. You can always feel free to call for an update if you'd like, though. Never be afraid to call. Although I may not always be the best at returning calls either, if you leave a message it does me worlds of good just to know you're out there thinking of me. I ALWAYS love to see comments posted here too!

I guess that's about all I learned today. Questions anyone?
Q: Am I nervous about tomorrow's procedure?
A: Absolutely! The thought of a needle going into my chest makes me a little anxious.
Q: Do they know why my tumor marker number is on the rise?
A: Not specifically. Could be any number of explanations. Some drugs just don't work for everyone, or they stop working after a while. Another possibility is that certain cancer cells are not responding and those are the cells that are messing up that number. Could be there are cells elsewhere that just don't show up in this scan. But as long as we keep treating we should hopefully manage to bring that number down again, in time.
Anyone else? Questions? Buehler? Buehler?

You Just Never Know

You just never know what 'treatment day' will bring. By definition it should bring a treatment, yes? Well, not today.

Instead, by the time I had asked all of my many questions and updated Dr K on all my current aches and pains he decided that we should do a CT scan of my head, chest, abdomen and pelvis. And that we should also wait and see what my latest tumor marker number looks like that we drew blood for today, before proceeding with another treatment. So I'll have the marker # sometime tomorrow, and I'll see the pics from the scan on Wed morning. After that we'll determine if we'll proceed on the same track or change things up a bit.

I've been experiencing headaches, vomiting, and lower back pain (even with the fentanyl patch on). That's why we want to see if there's anything new going on that we should be aware of. Unfortunately, this past weekend was my sort of annual get-together with my sisters and the way that I was feeling tapped into the fun way too much. I felt extremely cheated!

For some reason the scan caused a great deal more discomfort than I ever remember it causing in the past. First it took 2 nurses and 3 pokes to get an iv started. Then the iodine burned something terrible when they injected it. I know it does, but this was extreme. By the time I left I was ready to run screaming from the building. So then I came home and napped for 2 1/2 hours with my jacket on because, even on this spring-type day, I just couldn't warm up.

So I should have updated news to report on Wednesday at some point. If all looks "normal" on the scan and the tumor marker number is cooperating then we'll just go about our business as it was planned for today. If anything has gone haywire, we'll deal with that as necessary.

Topped Off

Yesterday I had a treatment and, as Brian said, we "topped off all my fluids." I received the Avastin, Taxotere, Zometa, plus extra pre-meds to avoid any kind of adverse reaction. The extra Benadryl sent my head a spinning and then knocked me out for a nap right then and there in my chemo chair. I also have a new prescription for the GERD symptoms I've been experiencing. Just one more drug to add to my list of many.

I think I ate more for dinner last night (steroids again) than I ate all last week combined. At least that was the way it felt. Today I'm on the anti-nausea pills right away to try and curb any ill side effects. I'll also have a Neumega shot each day this week. Four shots seem to be maintaining my platelets in a "safe" zone. My white and red blood cells are hanging right on that borderline, but haven't dropped at all, which is promising.

VERY PROUD to report that Dominic was named "Student of the Month" by his band teacher for the month of January. The letter his teacher wrote was just wonderful. This honor is kind of a random thing. No teacher is required to name any student, there are no quotas to fill, etc. That just kind of makes it all the more special. Dominic is very proud of this accomplishment. He'll get his picture in the Lakeshore Weekly too.

Please continue to pray for me. I really need to have a good week or two now. And know that I keep all of you in my prayers as well.

Back Again

I seem to have the flu bug back in my system. So much for feeling human this whole week. I'm still optimistic for the weekend, however.

Today's Non-normalcy

I thought I better jump right on here tonight while I'm feeling up to it...since we have NO clue what the next several days may bring. I did receive a treatment today of both the Avastin and the Taxotere. My blood work looked pretty darn good too, so we've decided that being treated every two weeks instead of trying to squeeze in a treatment every week may be the better way to proceed. Cautious optimism, anyone?!?

Now we couldn't just have a "normal" day at the clinic. Ahhhh, Brenda was in rare form and she, Brian, and I had a bunch of laughs. Then we started the Taxotere as the last bag to drip for the day. As Brenda would tell it, we were only two drips into the treatment (I would say more like two minutes) when I caught her attention and signaled her over. The insides of my ears had become very hot very rapidly. By the time she got across the room my whole face was hot and, apparently, I was quite red in the face and neck. Sure enough, I had a reaction to the Taxotere. They immediatly stopped the drip (am I stating the obvious there?) and then injected something else into the port to counteract some of the reaction. I immediately felt the heat going away. After that I was pretty light-headed for a while. They summoned Dr K also to have him check and make sure I was ok and get his word on how to proceed. We waited about 15 minutes and then started up again at a super slow drip speed, with Brenda staring me down for a reaction. We were fortunate in that there were no more incidents.

I just had some supper a little bit ago and will probably feel hungry tomorrow also from the steroids. Then we'll see, day by day, how many of the symptoms I experienced with the last treatment were from the Taxotere and how many were flu-related.

Darn! I'm trying really hard not to get my hopes up too high, but if we can treat every other week instead of every week, and if I can better tolerate this particular chemo with the Avastin, then maybe I can start getting some structure back in to my world and do more than sit in the comfy chair in the living room and/or sleep. Too much to ask for just yet? Sure, I'm a little premature in those wishes. But this could be a very telling week for me! Oh...more cautious optimism!

So that favorite motto of mine is ringing loud and clear in my head: "hope for the best, but prepare for the worst." The worst would be to go through all I did last time and find out there was no virus involved at all. The best would be to control all side effects this week and have a semi-human week next week with no treatments at all. If you're wondering about any special prayer requests I may have...there it is!

Thank you again for all my replies. So nice to see Lois post a comment. And there were numerous emails and phone calls as well. The food we receive is always soooo appreciated. Even when I can't enjoy it myself, it's a relief to know Brian and Dominic aren't eating another frozen pizza.

Be well all of you. Get those flu shots. They say it isn't too late! And let the good times roll...

Down for the Count

And it has been a total, complete, and indisputable knock out! That is to say...I have been knocked out for the last week.

It started last Tuesday night when Brian woke to a strange noise. The noise turned out to be me, shivering uncontrollably. It only got worse from there. We have been able to determine that what I've gone through is a combination of chemo side effects and the nasty virus that's been going around. Unfortunately, we don't know which symptoms to attribute to what. By Friday afternoon I was in the clinic getting fluids for dehydration, as well as anti-nausea meds and steroids.

On Monday we did a chest x-ray and found fluid back around my lungs. My blood work, surprisingly, was good enough that we could have done another treatment, but I refused. I need this week to gain back my strength...physically, mentally, and emotionally. The stomach is still somewhat unsettled and the mind is not as good as it could be. This was a true beating.

Each day seems to be getting a little better. I'm sure by Monday I'll be "fine" and we'll do another round of the chemo. Only then will we know what the true side effects of the chemo are. (Mouth sores seem to be a new one, making it extremely difficult to eat, even when the stomach seems willing.)

Hopefully this bitter cold will at least serve the purpose of killing off some of the nasty germs out there.

Number, please

Brian and I both had some vague ideas in our heads of what the new tumor marker number might be today. We were both overly (unrealistically) optimistic in our guesses. We both knew that going in. Really, we just wanted the number to have gone down and would have been pleased with whatever lower number we saw. What we got was a DROP of 115 points!!

The initial larger drops are not unusual. Now things will perhaps be less dramatic, but should hopefully continue on that downward trend as long as the meds continue to do their thing. My bloodwork wasn't too bad today, so we did get the first dose of Taxotere in. I'll let you know how I feel as the days go by. Hopefully more good days than I experienced last week!

I wish all of you a very good week! Stay warm out there!! Brrrrr...

What will be?

I'm supposed to try and have chemo again tomorrow. If the bloodwork allows it, we may switch to a new drug called Taxotere. There should be fewer neuropathies with this one. I hope he's right about that. My sense of touch and temperature and the tingling in my extremities and in my face have become most annoying. Of course, then what's the trade-off? Fewer neuropathies, but more of some other discomfort? What will it be?

After feeling mostly like crud all week I finally broke down and had myself a good cry this morning. I think I was long overdue and I feel somewhat better now, at least emotionally. I'm sick and tired of being sick and tired!!

It's blustery cold and windy here today. My mind and body long for the warm, sunny beaches of Mexico. Alas, it is not to be this year. Although we reached that conclusion some time ago already, I think it's just now starting to sink in as others come and go on their trips. I am looking forward to a weekend away in the Dells in March with my sisters, however. No matter how I feel I will make that work because the change of scenery can only do me good---not to mention the time well-spent with sisters well-loved!

All I have for now. Just wanted to check in. I'll try to get back to you with details of how the Taxotere works out.