Further Rejection

Once again, today, there was no chemo treatment due to "bad blood." I can't seem to get my white blood cells, red blood cells, and platelets to all cooperate at the same time. This week it's the platelets. So, instead, they gave me a shot to try and boost the platelets. I'll get another shot tomorrow, and then also on Saturday and Sunday. I'll have another blood draw on Monday to see if this is effective. We'll then just proceed as the blood allows.

My appetite has been pretty good lately and I'm gaining back a little bit of the weight I lost. The hardest part is finding things to eat that I can taste. The chemo affects (kills) my taste buds so I eat based more on texture than anything else. It's no fun to not be able to taste the good stuff now that I feel like eating again.

Tomorrow I meet with the E.N.T. specialist. Naturally, the nose bleeds have all but ended now. But my guess is that they're related to the Avastin and the delay in treatment has resulted in a break from the bloody noses. I highly doubt the E.N.T. doc will find anything wrong with my sinuses. BUT...as we all know...anything is possible!

Stay warm and ice-free! Although a little bit of snow might be pretty right now.

Going...Going...

Gone! Well, not completely, but almost all gone. After losing many hairs in Ma and Pa's shower over the weekend, it started coming out in handfuls yesterday. I had enough hair to make a small puppy, I think. So my very brave and wonderful husband took to the shaver and we cut it off with a #4 guard. I awoke to more hair on my pillow and in my shower today as well, so it won't be long before my head looks like my buddy, Josh VE's! As predicted, it has happened just in time for the temperature drop. All hats have been moved into a handy location and will become a daily routine now. My head is c-o-l-d without one! Still debating whether or not to get a wig. I guess time will tell.

Had a very nice weekend in MN, but it completely drained me. I pretty much slept the day away on Monday. Yesterday and today I got caught up on laundry but didn't quite make it to the Christmas decorations. Brian has been putting up lights outside and it's looking lovely. Hopes to get our tree this weekend. It will certainly add some cheer to my days. I LOVE this time of year with all the sparkle and colors. Sadly, even though my shopping list is nearly complete, I won't get to many stores this year and will mainly shop online. I'm one of those 'crazies' who likes the hustle and bustle of the holiday shoppers during this season.

Got to see my aunt and uncle, Jim and Kitty, over the weeked too. Jim made me a beautiful Christmas angel out of wood (scroll saw, I think?). I hope to get her framed with a piece of red velvet behind her. I'm truly touched that he thought of me and gave me this angel to watch over me.

Tomorrow I go back in for a blood check. If these past 10 days have been kind to me, then we should be able to proceed with this delayed chemo treatment. I have no clue what to expect so I'm not leaning one way or another. Chemo would mean more steroids so I may just log in at some bizarre, late hour tomorrow night to fill you in on the latest details.

Now back to my comfy recliner and warm afghan.

Rejected

I went in to the clinic today prepared for "anything" they might throw at me. Good thing too, because my numbers are all out of whack again/still, so we could not proceed with any treatment. Instead I will once again benefit from the generosity of a stranger who took the time to donate their precious blood. Yes, another infusion for me tomorrow.

On the upside...I did not throw up even once last week! And also on the upside...we will be able to travel over the river and through the woods to MN for Thanksgiving and I won't have any of the chemo stuff in my system to mess me up. Brian will have to drive the whole way again though. Driving has been removed from my list of things I'm capable of doing safely.

As far as the bloody noses go, I'm going to be seeing an Ear, Nose & Throat doctor just to confirm there's nothing else going on in there and that the problem really is related to the Avastin. I fear the "nose hose" after seeing Brian go through it how many times! But, as always, I'll do what I have to do to rule out other complications.

BIG thanks to Penny and little miss Mary for hauling me around today. Once Mary realized I wasn't just the babysitter and that Momma would be sticking around, she stopped crying and was happy to share her crayons with me. She was adorable therapy this afternoon!

In case I don't get back to the computer before the weekend, I wish all of you a wonderful Thanksgiving. It is amazing all the goodness in our lives for which we can be thankful. Each of you is a blessing in my life and I cherish you all!

My Monday Routine

Today I had my second dose of the Taxol. All went as expected with that part of things. It was nice to have my parents there to sit with me. They were able to meet my wonderful nurse, Brenda, and of course she and Dad "hit it off" right away when she commented on the Packer game and he informed her that we're Viking fans. Then he managed to spill his mostly full cup of coffee on the floor while I was in with the doc, so she was all over him after that. Many laughs today.

My platelets are borderline "good", as is my hemoglobin. But, naturally, we can't have everything in sync, so now my white blood cells are low. What the hell?!? The next three days I have to now go in and get an injection of Neupogen to try and build those white cells back up. (Just when I think I'm done with the needles.) I have a ride for Tues already as long as Brian ends up working where he thinks he will. I may need a "phone-a-friend" for Wed and/or Thurs for a ride, though, depending on Brian's schedule and how I'm feeling. I don't see much driving in my immediate future, however. So you never know...my number may just come up on YOUR caller ID.

I feel like I have been munching ever since I got home! Highly, highly unusual for me. We think it's the steroids. It seems to help take the jitters away too. And I'm actually consuming calories. I gained almost a full pound last week! (this after, last week, hitting the 30 lb weight loss mark since August)

It's amazing to me how much of a difference it makes having people around. It wears me out, to be sure. But just the chance to have a face-to-face conversation and get an actual warm body hug is HUGE! It makes the walls of my house seem to expand a little more again. Certainly there are times when I am not up for it at all because I have so little stamina. But those other times it is a welcome relief. ...and then I nap!!

Today was a mostly good day. Tomorrow should be nudging toward the good side as well, before the Taxol effects really kick in again on Wed and Thurs (if last week was any indicator). I didn't really get a good day last Tues, but we think we've solved that particular problem.

I had lots of fun emails today. Thanks a bunch for those! And I bought a hat today while waiting for my prescription to get filled. The hair is hanging on yet, but now the clock has started ticking...tick, tick, tick.

Ok, I think that's it for now. Let me know if I've left anything out. Hope all of you are wonderfully well!!

I feel icky, oh so icky

Just thought I'd update you on what these new drugs are doing for me...I think the title says it all. It has been a long, difficult, emotional week for me. The new chemo drip is even more harsh on my body than the chemo pills were. That was to be expected though.

Can't begin to tell you how much I need and appreciate the support and good thoughts from all of you. It makes each moment that much more tolerable. What an amazing group of people I have surrounding me!

Please Disregard My Last Blog

Here's the way things really happened...

I had a miserable weekend of pain/discomfort, nausea, and nasty bloody noses. The plans for a group of eight of us to try and dine out on Sunday night fell through because I was in bed all day. Remind me to never, ever try and predict upcoming good days again. It always seems to fail, for one reason or another.

To make matters worse, still feeling crummy today I went in for my rescheduled appointment. Platelets had increased only barely enough to make treatment possible. BUT, it turns out that a drop of 103 points is a very small number after all when we look at how many courses of the chemo pills I've had, so we started the Taxol today. It's a fairly low dosage, but in two to three weeks my hair will at least start thinning, and will most likely eventually all fall out now. (Just in time for winter. brrrr!) I will remain on the Taxol for an indefinite period of time. It all depends on how well it does or does not work for me. I will get receive the Taxol once a week, most likely on Mondays.

I really feel cheated! I commited the cardinal sin of hoping for the best, but not preparing for the worst. My optimism got the best of me and I felt really let down that I didn't get my "human" days.

Why am I still mobile and functioning at 9:45pm? Because they gave me steroids with the treatment so my brain is fairly wide awake I guess. That, and when I got home I napped from 6:30 to 7:30 since the blood pressure cuff woke me up every time I would start to snooze at the clinic today. HUGE thanks to Gordy and Romaine for getting me and my truck back home!

That's all for now.
May you all have sweet dreams tonight.
And remember to VOTE tomorrow!!

Crazy Daisy

After receiving two units of blood on Tuesday I definitely felt like my head was reattached to my body. It was a huge help that way, as well as giving me a little boost of energy and helping my vision. The latest blood draw shows my hemoglobin is up to 11. Still lower than the minimum of 13 we would like to see, but much better than the 8.4 I was at.

On Thursday we drew labs for my treatment, and to find out where my tumor marker is at. Red and white blood cells were ok, but now my platelets are low, so I couldn't receive treatment today as scheduled. I'm on hold until Monday now and we'll see what the numbers are then. That was totally unexpected! I also have my follow up visit with the oral surgeon on Monday.

Since I didn't have treatment today, I won't start my chemo pills until at least Monday either...if I start them at all. We may or may not switch to the Taxotere chemo drip on Monday. That seems slightly less likely now that we have my latest tumor marker number. Get this.......it dropped 103 points!! My assumption is that we will go at least one more round doing what we're doing and hope to see a downward trend. My new number is 3765.

This should be a good weekend for me. With only the anti-nausea pills and the Fentanyl from the pain patch in my system, I could almost be feeling like a human being.

So while we've had a minor set-back with the platelets and not being able to stay on the treatment schedule, the tumor marker is down a bit (funny how a number like 100 is now "a bit") and we can all be thankful for that.

Enjoy this sunny, albeit CHILLY afternoon!

Changes in Scenery

Keeping this brief cuz I don't feel so hot.

Last Thursday my wonderful sister, Kathy, drove up from Milwaukee with her two boys and picked up Dominic and me and drove us all to my wonderful sister Sue's house in DeForest. I was a terrible traveling companion and a lousy guest. But the kids all had fun and I had a new view as a lump on Sue's couch instead of on my own. Dominic and I stayed overnight cuz the drive back would have been too much for one day. But when I woke up Friday morning I was wishing I was home cuz I felt so rough. Again I was a terrible traveling companion, and once we reached my house I fell asleep in the chair for two hours---with my coat still on.

Today I was out of the house again to see an oral surgeon about these mouth problems. A potential problem is osteonecrosis as a result of various meds; most specifically the Zometa I've been taking for two years now. The upside is that there is not a big gaping hole in my jaw bone. I have some mouth rinse to try for a week to hopefully get these blood clots under control. Then we (Brian and I) went to the clinic to get my blood drawn cuz I've been so light headed and woozy and weak and out of it. Sure enough, I'm very anemic again. So from the clinic we went to the hospital to get my blood typed and crossed for a blood transfusion tomorrow (Happy Halloween). I'll be there at 10am and it will take 6 to 8 hours for the transfusion. If you're in the neighborhood stop by! I guess that's another change of scenery for me tomorrow...the view from my hospital room.

Definitely time to go get horizontal on my couch again...and try not to sleep through my Vikings game.

Happy Sweetest Day!

Since I can't send a Hallmark card to each one of you, I thought I would blog my good wishes to you instead. I think it's very sweet that all of you check in here from time to time to see how I am. And on a gloomy Saturday in October, it's especially nice to remember all the many sweet people who touch our lives.


Yesterday I had labs, saw Dr Kumar, and had a treatment. The labs came back showing my red blood cells have taken another dip. I may end up going in for a blood transfusion early in the week. We did not check the tumor marker number, but will do so in two weeks. That's the number we WANT to see drop! White blood cells look fine which is always good.

When I saw Dr Kumar we talked about a number of different things I've been experiencing, the strangest of which are the blood clots in my mouth. Three times I have had it happen where I taste blood and then discover a clot. Yes, it's as gross as it sounds. They are about the size of half a peanut. It is most likely caused by one of the meds and I am now taking one Bayer tablet each morning to prevent clotting. Brian said he is going to have to build me a bigger shelf for all of my medicine bottles. We also talked about this pain in my right thigh/femur. For now we're going to monitor it and see if it becomes more of a constant thing, but it could be a side effect of some of the radiation I had to my back. If it gets worse or is problematic on a daily basis then we may do an x-ray or scan. I sometimes walk with a limp because of it though.

The treatment itself went well enough. The nurses were friendly and wonderful as always. No surprises or changes, except I got the Zometa this week also. I haven't had that for six weeks now, whereas it used to be every four weeks. Chemo pills start up again tomorrow (she says dreadfully).

Last night we had a visitation at the funeral home in Oostburg. Afterwards Brian and I came home and had a conversation about our own funerals/burials. It was not a conversation either one of us has wanted to have, but the evening just lended itself to finally sitting down and discussing some things. It certainly isn't anything anyone wants to talk about or think about, but it was important. And it seemed to lift another weight from my shoulders. Next step is to actually follow through with making some of the plans. Like I keep saying...you take care of all of these uncomfortable things, and then you just file them away for safe keeping until they're needed---no matter how far down the road that may be.

Hug all your sweeties today that you can!

Hats off to my Friends!

Or, more appropriately, sombreros off!!

What's better than a friend callling to see if it's ok if she stops over? How about that friend showing up with 3 other friends with her?

And what's better than that? How about if they show up wearing sombreros and ponchos, bearing food and beverages (including a Snapple for me!) and a boom box with a CD of Mexican music? And there were flowers and a card with a picture of the 5 of us from Cinco de Mayo, 2005. (And Brian never once let the cat out of the bag.)

Most special of all, there were lots and lots of laughs! I can't thank these dear women enough. When they left I cried because they made me feel so loved. So THANK YOU to KB, Lisa, Sheryl, and Veronica!! Don't think I ever take my good fortune in friends for granted. You guys are the best!

The timing of this little fiesta couldn't have been better, either. Monday was one of the very worst days I have had so far through this entire experience. I felt completely awful the entire day and it left me weak and emotional and tired of this ordeal. I felt a little better on Tuesday and by Wednesday was up to seeing some visitors. It renewed my psychological strength!

Today I feel relatively decent. I managed to finally get a couple of loads of laundry done. (This has become a major feat for me.) And I finally went through the piles of mail that have been building up on my kitchen counter. Of course, all of this is done in small chunks of time, with resting in between each step. But I'm proud of these small accomplishments.

Tomorrow is treatment day again and we'll start all over in the process. I just keep telling myself that the treatments are making me feel yucky because they're working. That's my story, and I'm sticking to it.

So once again I send out a heartfelt THANK YOU to all of you who read this blog, say your prayers, and extend your warmth into my world. I know an awful lot of pretty darn wonderful people and I feel truly blessed to have each and every one of you in my life!

Color me Tired

With no warning or foresight, I had another rough night last night. I woke up around 1:30 and did some tossing and turning to try and get comfortable. At 1:50 I finally just got out of bed so I wouldn't wake Brian. My right knee, femur and hip joint all hurt so badly again. I tried walking, sitting, laying down, standing up, propping this way, dangling that way...I even tried the new soft and fuzzy heating pad from my sister thinking the heat would ease some of the discomfort. Nothing worked. It was one of those pains where I couldn't even cry because it hurt too much (ever had that?---ties back to my labor analogy from last time this happened).

Then, to make matters worse, I got violently sick at about 4:00. Why? Why should I be getting sick 10 hours after I last ate? To say the least, it was a long, miserable night. At 7-ish I finally felt the pain easing in the leg and crawled back in bed. I slept off and on for about 4 hours.

What a terrible hostess I am! My brother, Jerry, is here and I haven't even seen him yet today. Pathetic. Of course, he's outside playing in the woods with Dominic, Lorenzo and Zachary, so I think he's being fairly well entertained.

Today is day 7 of the chemo pills. While it may seem unrealistic any more at this point, I still have high, high hopes for a day of "normalcy" during this upcoming week when I'm off the pills. Keep your fingers crossed for me!

Have a warm weekend. Don't blow away. And enjoy the perfect blue sky!

What's on my plate?

Good morning one and all,

I had an appt with Dr K last Friday, as well as another treatment. The lab work shows that my anemia has worsened slightly so we up-ed the dosage of Aranesp. I also continue to be dehydrated so they gave me more fluids than usual. I'll never understand dehydration! It isn't like I don't consume fluids throughout the day, so how does a person really get to be dehydrated? (I know the lack of eating and some of the drugs make a difference, but it's still very strange to me.) These two factors alone (anemia and dehydration) certainly can account for the extreme light-headedness I've been experiencing.

Even now my head is swirling somewhere above my shoulders in a disconnected kind of way. Add to that the fact that my stomach is flopping around like a fish out of water and it's just another day in the life of Carol.

We are going to wait four more weeks and then check my tumor marker number again at that time. If the numbers have not come down then we will switch to the Taxol (drip chemo) at that time. I can't put my finger on what he said or how he said it, but there was just something different about Dr K this time that did not feel very optimistic about my prognosis. Normally I leave there feeling more positive than I felt going in, but not on Friday.

I am happy to report that Dominic did a really good job driving the other evening. Likes to hug the right shoulder pretty close, but we'll work on that. He and his buddy also had an AWESOME time at the concert at Alpine Valley Saturday night. I'm very pleased we were able to work all of that out for them.

Brian was a little sore in the shoulders this morning as he golfed on Friday, Saturday, and Sunday this past weekend. Have to take advantage of these last good Fall days I suppose. I'm so happy he gets out and has fun with his buddies. It's really good for him!

All kinds of upheaval at work right now. I have some of the details but not all. Kind of nervous about what all of this could mean in the long run. I'll check in with some folks there when my brain feels a little less clouded so I can absorb all that's going on. For now, I'm trying not to worry about it too much.

Time to go put my head on my pillow. Funny how that seems to have a direct effect on my stomach as well.

It's me

My apologies to those of you who have been checking in and finding no new updates. I guess it's because I have nothing new to say. Same ol', same ol'. How many times do you really want to read that I'm tired and nauseous and weak and have no energy or zip, and tingling in my fingers. I do appreciate the fact that so very many of you are so loyal in reading this blog. I'll try to do better.

My current state finds me home every day, which can be depressing at times. Especially when this is my "off" week (from the chemo) and I feel like I should be more human, but that just doesn't seem to happen any more. The chemo pills are cumulative both during the week that I'm taking them, but also in how they accumulate in my system over time, so their effects are still present on these weeks when I'm not taking them. I don't like it. I was so looking forward to a couple of good days when I didn't feel I needed to be close to my couch and bucket and bed.

I can't remember the last day that the mail came and there wasn't some sort of card from someone in there. Funny ones, prayerful ones, funny ones, thinking of you ones, funny ones. It definitely makes mail time a treat.

The phone calls are always appreciated too. I'm very, very bad at picking up the phone and calling others. I apologize for that. It isn't that I don't want to talk to anyone. It's that I feel as though everyone else has a life going on around them and I would hate to call and interupt that --- or be a downer on someone's good day. I'll try to do better with that too!

Dominic has his drum lesson about 4 or 5 blocks from work, so he's going to drive tonight (yikes!) and I'm going to spend about a 1/2 hour at my desk while he drums. Then he can drive us back home again. I'm actually not all that nervous. We'll take back roads, not the interstate. I'll let you know how it goes...

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...