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...

Surprises

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

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

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

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

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

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

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

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

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

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

Treatment Plan

Dr. Kumar and Dr. Vogel spoke at length yesterday morning. I got the information through Brenda (the fun nurse) yesterday but have waited to blog until today because I knew I'd have more information after being at the clinic today for my Procrit shot.

First thing we did was stop the Xeloda chemo pills. I'll take the anti-nausea pills for a couple more days though to be sure it's far enough out of my system to no longer make me sick.

Next appointment I have is actually with my dentist to be sure the Zometa has not affected my jaw or teeth at all. Good dental hygiene is also important when undergoing chemo and taking various cancer-related drugs. As long as everything checks out ok we'll continue with the Zometa infusions. I think it should all be fine. There was just a bit of a red flag when they noted I had jaw pain last week or the week before, but I'm sure that was from the intense vomiting.

The appointment after that will be at the hospital, as an outpatient, to have a port put in. That is a device that's placed in my chest, underneath the skin, through which chemo drugs can be given, all my other infusions can be given, and blood can even be drawn. We've talked about this in the past because I have such poor veins, but now it's going to happen.

Then on Friday, September 8th, we will start a regimen of chemotherapy. I will receive a drug called Taxol every week for three weeks, and the Avastin every other week. What would be week 4 will be a week off of everything. I am currently scheduled for two rounds of these treatments, followed by another CT scan. Depending on what the scan then shows, I may be able to start the estrogen therapy. (not sure yet if that will involve a trip to FL or not)

Potential side effects include thinning/loss of hair, numbness or tingling in my hands, feet, arms and/or legs, nausea and loss of appetite and taste, and fatigue. Those are the main ones.

I am really dreading all of this...but if we can accomplish something favorable in "only" eight weeks time, it will be worth it!

A New Day

Thought I better check in and let everyone know that I am doing much better than expected today. I did allow myself a "mental health day" to continue to try and absorb this latest news and to take some steps to make me feel as though I am getting my life in order. Eliminate chaos of all kinds is my newest goal.

I am thankful that I am feeling quite a bit better physically so that I can handle the latest mental/emotional anguish. I can't imagine having received this information last week when I already felt like I was down for the count. Timing is everything!

From what I'm hearing, the gates of heaven are being rattled loudly as MANY prayers are sent that way on my behalf. It's overwhelming to realize how many individual souls are praying for mine. What a tremendous gift!

Time to get out in the sunshine and pick my ripened tomatoes.

More updates as they become available...

Extremes

What a wonderful weekend and fantastic party we had to celebrate my parent's 50th anniversary!! Seeing family (both immediate and distant), seeing old friends, meeting new friends...it was all good. The energy and love all weekend long were just absorbed into my system and it did my heart and spirit a world of good.

I woke up this morning feeling pretty darn good. Since I started the new anti-nausea pills last Friday I have not thrown up even once. That is a HUGE barrier to be over. I feel my appetite slowly coming back and hopefully will regain some of my lost strength very quickly just by eating.

I got a call at 8:15am from the clinic to cancel my appt with the gastroenterologist. I was ok with that because I figured that since I'm not vomiting any more I didn't really need him and the scan was just precautionary. BUT...Dr Kumar wanted to see me today instead to go over the results. It didn't click with me right away, but eventually I figured out that that was a bad thing. To confirm this suspicion I called back and asked the nurse if she felt Brian should accompany me to the appointment and there was no hesitation when she said 'yes.'

What we learned this afternoon is what I suspected all day. The cancer has spread, and there are now spots on my liver. This is a very bad thing. The liver can be very difficult to treat. We are looking at two options, however, and I will try to explain them the best that I can.

Our first choice right now seems to be to try and get an appt with a doctor in Florida who has had some success with treating liver metastases with high-dose estrogen therapy. We're hopeful he will find my situation to be one that makes me a candidate for this treatment. Dr Kumar has heard this man speak at seminars and is familiar with his work. His name is Dr. Charles Vogel and, apparently, he is someone who thinks outside the box. We hope to hear back from him within the next day or two.

The second choice is to begin another infusion, this one being Avastin. It is used primarily for colon cancer patients. The trials with breast cancer patients have shown good promise. And while not FDA approved yet for breast cancer patients, my insurance company has already okayed the treatment.

It is undetermined yet if I will need a liver biopsy or if I can maybe be spared that procedure.

This is all I know for now. Well...this, and the fact that I am now scared out my mind. Suddenly I feel as if there are lots of loose ends that need to be tied up.

So, as always, please keep praying for me. And pray for each other too. This isn't easy for ANY of us!!

Feeling Rough

I haven't been feeling very well for a long time now. We've tried this, that, and the other thing but I'm still nauseous. Today we made plans to delve further into the problem.

First of all they gave me some different anti-nausea pills to try. I haven't taken any of them yet though. Then we scheduled a CT Scan of my chest, abdomen and pelvis for tomorrow afternoon. The trick will be to keep the chalky drink down long enough to accomplish the scan. I'll meet with a gastroenterologist on Monday to get the results. We need to find out why I'm still throwing up so often.

Every day I try, try, try to get my butt to work. I haven't been so successful. It's very discouraging. When I am there I tend to not last very long. When I'm home I accomplish little or nothing. I spend lots of time on the couch and in bed; sleeping, reading, and watching bad television.

I'm sorry to be such a downer here, but that's just the mood I'm in right now.

My biggest concern is trying to figure out how to make myself feel decent enough to get through Mom & Dad's big anniversary open house on Saturday!

That's all for now. I have soooo many long overdue 'thank yous' to get out to people. I hope to be able to accomplish that soon, right here in this blog. Until then: THANK YOU to everyone who has called, cooked, visited, donated, and prayed!!

I think today is Wednesday

Funny how easily I lose track of the days of the week when I don't go into work each day. It gets very confusing.

After not keeping anything down on both Monday and Tuesday, I ended up at the clinic yesterday afternoon where they gave me IV fluids, IV anti-nausea drugs, IV steroids, and one other thing through the IV that I don't remember. All of this was to help with the dehydration and hopefully get the stomach back to where it needs to be. THANK YOU Sheryl for the ride!!

I slept most of the time I was at the clinic from that "other" thing they gave me, napped at home, and then slept like a rock last night. The head was a little fuzzy this morning yet and I just now had some Gatorade and saltines so here's hoping all is good.

Sue is driving all the way from DeForest this morning to pick up Dominic and take him to the airport for me. We also have school registration before he takes off. Depending on how I feel at that point in the day I may have her drop me off at work (or if my head is more normal I may drive myself). I have a brand new desk chair there that I really need to go and sit in!

Hope to write more again later today...

Quick Update

Have to keep this short as I'm back to feeling lousy again...

For a few days I was off all meds of all kinds except Advil. I was starting to feel like I might have some good days, but then developed more pain flairs. I think all the meds had time to leave my system and that's why the pain started up again. Advil was no longer doing the trick. I tried half of one Tramadol before bed last night and 1/2 when I awakened to some pain at 4:30 this morning. By 7am I was sick and haven't kept anything down yet today.

I called the clinic and they prescribed me with a patch that will more evenly regulate the dosage of pain meds I receive. Time will tell what side effects I'll experience from this now. Poor Brian was greatly inconvenienced in his work day running around town to pick this up. It's new and there was only one pharmacy that carries it.

Back to my couch or bed now.

I HAVE to blog again soon because the Rally on Saturday was quite the amazing event once again. My Stecker family outdid themselves!!

Conspicuous in my Absence?

My observant sister, Sue, told me that when I say things like "I'll keep you posted" and then I don't post anything it usually means that I'm not feeling so good. I guess she's right! Because I haven't posted anything in a week, and it's now been a week since I started the Xeloda.

Strangely enough I am now posting this shortly after midnight. Could it be that after two weeks of what feels like non-stop sleeping I've finally reached my limit? No, I don't think that's it. I think I've just taken some meds too late in the evening that are now keeping me up. My eyes are tired and I keep yawning, but I can't seem to fall asleep. All jittery.

I haven't been feeling so great lately. But I do think it may be improving a bit day by day. I worked a grand total of one hour last week! Can you believe that?! I'm averaging around 2.5 hours/day this week though. So that's a big jump percentage-wise. Mornings seem to be my worst time of the day. But I'm muddling through. I mostly have myself weaned from the pain pills (which may be part of why I'm sitting here at this hour), with the Xeloda and some Ibuprofen taking over in the pain treatment area.

Today was NOT a good clinic experience for me and I came home in a pretty down mood. A nap seemed to snap me out of it though. They had to poke me three times to get the IV started. Plus all the blinds were shut and a lot of the curtains between the patients were closed and it felt almost claustrophic in there (and I'm not a claustrophic person).

They did give me some samples of Ensure, Boost, Support, and Carnation Instant Breakfast drink. All of these are protein/energy drinks. I've lost nine pounds in the last two weeks from not eating much at all, and not always keeping down what I have eaten. Plus, I can't seem to tolerate any protein. Even the word "meat" turns my stomach---much less the sight or smell. So these drinks should maybe help keep my diet slightly more balanced.

I checked out a book today (now yesterday, I guess) from the resource library they have at the VLCC. It's the first book I've come across that's written for a person with metastatic breast cancer. There is a TON of information out there for a woman who is first diagnosed, or who is going through breast cancer treatment for the first time. But there is far, far less info on the taboo subject of a cancer that may have returned/spread. So far I've only read the preface, but I know I'm going to gain a great deal from the experience of reading this book. I'll let you know when I'm done with it if it's recommended reading for any/all of you. I'm hopeful that it will be a catalyst for some heart warming, and even heart wrenching, conversations about this reality that is the Cancer in my life.

OK...still not quite sleepy enough. Maybe I'll go buy something on QVC now. (Just kidding!) But I will sign off for the night. Hope all of you have managed to stay cool this past week and that you're tucked away safely and snuggly in your beds.

Hugs!

Down the Hatch

With some trepidation, I managed to get the first dosage of Xeloda down my throat this morning. Now I'm trying to keep my mind busy and not sit here thinking about what the side effects may be or what comes next.

I'll keep you posted...

Dear Liza, Dear Liza

Good thing there's no hole in my bucket, dear Liza, cuz within only a couple of hours of my last blog, the bucket had to come back out. While it hasn't been a constant companion, it's never too far from my grasp.

I still feel queasy and SLEEPY! Lots of napping going on, very little eating happening, and today's "major" accomplishment was...hmmm...one load of laundry in the machine and I picked three weeds before almost falling over in the yard (decided to come back inside at that point since I was home alone and thought it might be safer/smarter).

I'll chat with Dr K tomorrow. Not sure if I have to resign myself to the fact that my only hope for pain relief is to feel 'out of it' in other ways. I also have this strange stiffness in other parts of my body that the pain relievers aren't necessarily relieving.

I hope to maybe get to work for small patches of time this week, but since I can't really drive, that may be tricky. At the least, maybe I can stop in and forward home everything I need to assemble our employee newsletter. I just may call on one or two of you who have offered your transportation services. I'll let you know what the doc determines.

Enjoy your Sunday evenings!

New drugs

I know, I know...I should have blogged days ago, but I just wasn't feeling up to it. Here are the results of Wednesday's doctor appt:

My red blood cells seem to be holding steady. My platelets have increased somewhat so instead of the usual 40mg of Procrit, they gave me 60mg instead, in hopes that this will get things all charged up by next Wednesday. Yes, we've put off the chemo pills "one" more week.

Because of the increased pain I have been experiencing, we are trying a new pain reliever called Tramadol (sounds like "damn it all"). Side effects include nausuea, drowsiness and, ironically, headaches. I've been taking anti-nausea pills that also cause drowsiness, so I've been sleeping a LOT lateley! The headaches went away after the first day, so that was good. The nausea is lessening and I put the "bucket" away this morning. The sleepiness seems to be sticking with me.

The reason for my increased pain is that my tumor marker number took a significant jump again. Now at 1474, that's a jump of 345 in only TWO weeks! Dr K hasn't seen that number yet as he won't be back in until Monday.

So if I can ask for specific prayers this week, it would be that we can finally start the Xeloda and start to gain some control over this thing. Healthy blood is what I need!

I'm supposed to be camping right now. (insert sad face)

Too Many Steps

It's a darn good thing that KB and I went to NYC last year. Brian, Dominic and I walked around the Farm Technology Days yesterday and I am hurtin' for certain today. I just think I walked too far, and it was on mostly uneven terrain, so I really feel it in my hips.

Yesterday's blood draw showed that I am still anemic. My platelets are also low and I'm supposed to be very careful so as not to cut myself. Xeloda is on hold for another week.

Golf Good...Bocce Bad

I had a lot of fun golfing Friday night! My driving wasn't so good, but my putting wasn't too bad. It's only my second time out this year. We had a lot of laughs with the Thorns and the weather was perfect. I didn't even hurt when I woke up Saturday morning!

Yesterday, however, Brian and I played some Bocce Ball in the yard. This morning I woke up feeling a bit of pain. I think the tossing of the weighted balls was not a good thing. So it's self-inflicted pain, that came with fun, so I'm ok with that. And the Ibuprofin is helping.

Overall, still feeling pretty darn good!

High...but Low

Just got the latest tumor marker number. It's up again, which I was pretty certain it would be. But it's lower than I anticipated, so that's reassuring. Now looking at 1129. That's a jump of 93 since last month.

Suddenly feeling a little light-headed this afternoon, but nothing too major.

Overall, still feeling GREAT!

Bad News that's Good News

The bad news is that my bloodwork numbers are going the wrong way. I'm actually more anemic this week than I was last week. But the numbers aren't quite low enough to warrant another transfusion yet. That also means that things are still too out of whack to start the chemo pills.

What's the good news in that? Well...I'm feeling really good today and was afraid that starting the Xeloda might make me feel crummy all over again. So I kind of feel like I've been given a reprieve and hopefully will now have a full week of feeling like a million bucks!

I'm really looking forward to golfing on Friday night!

I'll blog again tomorrow once I have a new tumor marker number to report. No matter the number, I feel good and I'm going to make the most of it!

I Feel Like Carol Again!

I am very happy to report that, at least for today, I feel like my old self again! It's wonderful!!

Right or wrong, I took myself off of the steroids and I honestly think that is what has made the difference. Appartently it shouldn't have been the cause of anything I was feeling, but the fact that it was really the only foreign thing in my system I just had to give it a try. Maybe the timing is all a big coincidence, but they will have to put up a good argument to get me to go back on them again.

As long as my blood counts look good today, I should be popping the first of my chemo pills today or tomorrow. I'll let you know how that goes...

Had a GREAT weekend with Dave & Kate and their boys. It was mellow and relaxing, but still so very nice to have them visit. Good therapy! Then Mom and Dad came and we had a lot of fun with them too! It was a really good 4-day weekend with lots of time spent with family and friends.

OK...back to work now. Just wanted to share my happy day with you!!

No Blood on Monday

I was thoroughly convinced that I would be getting a transfusion today, based on the way I feel. I was wrong. That is a good thing because my numbers actually have come up a little. They're still not in the normal range, but we're making progress.

Instead, today I had an ultrasound of my heart done. We're trying to figure out why I'm short of breath and weak and light headed,etc. They want to make sure that one of my chemo drugs didn't cause a delayed problem. Dr K doesn't seem to be too concerned. He thinks that this is radiation effects and my body is just having problems rebounding. We won't have results for at least a couple days, maybe up to a week.

The most frustrating part is that I still feel blah, and they can't tell me why or what to do to feel better any sooner. This patient's patience is running thin!

I now have the Xeloda pills in my possession, but I won't start taking them until next week after one more blood draw. Scary in a way, but necessary.

So that's my current situation. Nothing much to report there, but thought I better update.

Thank you for all the many encouraging phone calls today! I needed to hear all those wonderful voices and it helped me a LOT!! I am soooo fortunate to have the support system that I do. Don't ever, ever think I take any one of you for granted.

Blah

Still feeling like poo these days. My self-diagnosis tells me that I will likely be back in the hospital tomorrow for a blood transfusion again. That would be good and bad. Good, because it means that we know what the problem is. Bad, because it means the Procrit isn't as effective as we had hoped and my marrow is still messed up. But at least if this is still from the anemia then we know the problem. If they check my blood and I'm not anemic, then we have to try to solve a new problem.

It's just so frustrating to spend so much time on the couch! I feel completely useless and it's starting to get to me. Throw in the fact that the steroids are making me weepy and I'm kind of a puddle.

On the upside? I'm still pain-free!!

Just Say No!

I don't know how anyone can possibly become addicted to meds of any kind. Not the type that mess with your head, anyway. This has not been fun or enjoyable at all from day one.

I finally called the doctor's office yesterday and told them I just couldn't take it any more. They took me off the morphine, but left me on the steroids. Even at these low doses my head is still not under my control. I am pain-free, which was the overall goal of this, but I haven't decided if I made a good trade off. I realize the day will eventually come when I don't have a choice on what meds I'm on for pain, but for now these are definitely affecting my "quality of life" and I'm just not ready to be so out of it. I have my Procrit injection at 1:00 and will have them do another evaluation to see what else we can maybe try.

Ow!

The pain I have in my hips/pelvis has been intensifying. I was able to get an appointment squeezed in with Dr. Kumar this afternoon and he has prescribed some pain meds for me. Specifically, I'm going to start on some low dosage morphine, and some low dose steroids. The plan is to take these pills for a week or two and by then we'll have a better idea of whether or not the Procrit is effective in boosting my blood. Then, once I start on the Xeloda, I'll maybe not need these new pain meds.

The morphine could maybe make me a little sleepy for the first day or two, but the steroids could make me hyper. So I'm hoping for even keel, with maybe a little hyper to give me some energy to buzz around this BodyWorks exhibit in Minnesota.

Hopefully I'll be, basically, pain-free the next time I blog in.

Happy Father's Day all you Fathers out there!!

A Gift

My friend, Faye, sent me a most wonderful present last week. She gave me...well..she gave me...ME! Faye took the time to print out every one of my blog entries, along with comments, and assembled them into a 3-ring binder. This is something I have wanted to do for myself, but she gifted me with the end product first. It's wonderful!

I am amazed to go back and see the dates and anguishes and tumor marker numbers and thoughts and feelings of "long ago." As Faye said to me: it's been quite a journey.

THANK YOU FAYE! What a wonderful, perfect surprise!!

I got the jimmy legs!

I think I'm using that Seinfeld reference properly --- ??

What I'm trying to say is that I seem to be dealing with 'restless leg syndrome.' That's a self-diagnosis, however. My legs feel all jittery and weird and I'm losing a lot of sleep because of it. Unfortunately, I don't know if this started right after the Procrit shot or right after the blood transfusion. I do know that I need to talk to someone at the clinic tomorrow though and find out what to do about this. It's making me crazy!

I did not golf on Friday night. (Sorry Hendrikses and Thorns!) What I did do, instead, was take a two and a half hour nap. How's that for being re-energized? Still I haven't noticed a huge improvement from the transfusion.

I did golf this afternoon with Brian and Dave Ludens in a scramble/best ball tournament. We used 4 of my tee shots!! We had a lot of laughs out there.

I hope everyone is rested and relaxed from the weekend, and ready to move in to this new week. It will be a short work week for me as Dominic, KB and I are headed to the Twin Cities. We're specifically going to see the Body World exhibit. It will be quite fascinating to see the inside of the human body without all the blood and gore. Can't wait!

Hoping everyone is well. Please keep those prayers and good thoughts coming my way! I greatly appreciate them...and definitely need them. THANK YOU!

A -

'A' Negative, that is. My blood type. I remember poking my finger in science class in middle school and typing our own blood. I'm sure they don't do THAT anymore...needles, blood, etc. I didn't remember what my blood type was though, so that's an interesting bit of info to tuck away somewhere. Hopefully it's info that's not needed any time in the near future.

I had hoped to bounce on out of the hospital all newly oxygenated and energized. It didn't happen quite that way. I then thought that maybe after a good night's sleep with fresh, new blood coursing through my veins that I would leap tall buildings in a single bound this morning. Nope...not even really doing any puddle jumping. I didn't feel like I was going to tip over after I stood up from weeding last night, and I wasn't all winded after my shower this morning, so those are positives. I think my expectations were just set a little too high.

As the day progresses I'm feeling more worn out again. Time for a nap, I do believe. Not sure if I'll golf tonight or not. May save the energy. It's awfully windy out there anyway, and a bit cooler. I can always meet up with everybody in the clubhouse. We'll see how it goes.

As I watched those two units of blood drip-drip-drip for eight hours yesterday, I felt very fortunate that someone with my blood type had been so generous as to donate their blood for me. I don't know how many of you are donors --- but it's an amazing gift! Something to consider?

"Everyone Knows It's Windy"

Or wind-ed, as is my case. Apparently I am more than just a little bit anemic. I'm quite a bit anemic. Which would explain why I feel so winded so easily doing the simplest things. (phew! I thought I was really just that out of shape!)

So today they gave me a shot of Procrit to help boost my blood and hopefully get it healthy again. Tomorrow I'll be at the hospital all day having a blood transfusion. My hemoglobin is at 8, and it should be more like 13 or 14.

We can't start the Xeloda until we get this a little better under control. I'll receive Procrit shots once a week for three more weeks and then check back with Dr K to see how we've done. Hopefully there's only this one transfusion that will be required.

With all this brand new, oxygenated blood I should be able to hit the green with no problem on Friday!!

I'll get back to you when I'm feeling less light-headed...

Happy Birthday Mom!!

979 - 922 - 1036

No, that's not a phone number. It's the string of my last three tumor marker numbers. I've gone over the thousand mark for the first time.

The 979 went down 57 points to the 922, but now the 1036 is 57 points higher than the 979. I've got no good math for this one.

It also appears that I am anemic, so we may have to do a little something extra to fix that situation. It sure explains why my energy level isn't improving as fast as I'd like. Although I managed quite nicely on the golf course last Friday. (That is to say, I golfed all nine holes...we don't need to talk about my quality (?) of play!)

I'll see Dr S and Dr K tomorrow and we'll set a new plan in motion. Stay tuned for further updates...

And now, a request for some prayers for peace in the hearts of my brother and his wife who lost their beloved dog, Jake, this morning. He too was a member of the Breiter Family Cancer Survivor Group. It can all be summed up in three words from Jerry: "empty" and "cancer sucks."

Hug your loved ones...humans and animals, alike.

Let's Call it a Success

Last Thursday (where did this week go?!) Brian and I attended the support group with some trepidation. As we pulled up we noticed it was primarily older folks walking in. We still thought that might be ok though. As we approached the door we saw a woman we know and she said to Brian "It's nice to see you here! My husband is home reading the paper." That comment, along with the fact that the majority of the people there had a "support" person with them, made Brian feel a little more comfortable I think. And not one tear was shed by anyone in the room, so that helped too! I think it was a good first meeting, and we plan to attend again.

We had a great, long holiday weekend. And now that it's Thursday again, I'm looking forward to another good weekend! I'm a little envious of my parents and my sister, Sue, who will be in Oregon for the birthday and graduation festivities! But we'll have our own fun around here, to be sure.

Monday I'll have my blood drawn so that we'll have all test results by my Wed appointments. I'll meet with both Dr S and Dr K, and then have my infusion on Wednesday. I think we're all on pins and needles waiting to see what the tumor marker has done this month. The aches I have lead me to think it may have gone up again...but I'm not thoroughly convinced that everything I feel is in my bones. Hopefully they can decipher all the pangs and pains and twinges. It could just still be leftover sensations from the radiation and the laying around and the infection and all of that nastiness. So, yes, I am extremely curious to get that number!

Aside from all of that business, life is treating me well. Depending on the weather, I will swing my first golf club of the season tomorrow evening. I'll let you know how that goes. Even if I can't golf all nine holes, it will be great fun to be on the course and enjoying time with friends and family.

LOVING the sunshine! Hope it's "brighter" where you are!

Let's Try This Again

Tonight, Brian and I are going to attempt another cancer support group. This will be a first for Brian, and I haven't been to one since my first bad experience. So why are we trying this? Well, in the first place, this one is through the Vince Lombardi Cancer Clinic (VLCC) so it's my "home turf" and I think that may make a difference. Also, with Brian by my side it might be a little easier to have him there to lean on if the need arises.

I'm kind of looking forward to this. VLCC hasn't had a support group, that I know of, for a little while...this is a re-start for them. So tonight will be more of a "planning session" where we can give some input as to what our needs are and what we might like to see happen. And it's quite possible that I will recognize some of the other attendees.

Mood-wise, I'm feeling pretty good these days. My energy is slowly rebounding and my naps have been cut back to only about 20 minutes per day. Sitting at Brian's softball game last night left me achy because of the cold wind, so I feel a bit of that today. But not too bad. I have some other pains that don't seem to want to go away without the aid of some Ibuprofin, but I suppose that's to be expected.

The very best news that I have to report is that my brother, Dave, is D-O-N-E with his chemo, as of yesterday!! What a huge relief for him and his wife, Kate. He will still have three weeks of radiation yet, but I think that will be a cake-walk for him, compared to what he's been through with the chemo. I am just so thrilled for him because I know what it feels like to walk out of the clinic after that last treatment.

Looks like we have a fun and busy weekend lined up for ourselves. We're going to travel a bit, relax at home a bit, and watch Dominic march in the parade on Monday. Let the holiday weekend begin!!

Safe travels to those of you who are traveling; happy times with family and/or friends; healthy relaxation to all!

I'm Feeling Better Today...

...until someone asks me if I'm feeling better today. Then I feel all weepy again! It's so strange. But as the day progresses, my mood is improving more and more.

Big K

I saw Dr. Kumar yesterday. First time in over two months. Now that I'm done with the radiation I kind of flip back to the other side of the clinic and see the folks over there instead.

Dr K told me that he was a little concerned when he saw that my tumor marker number had gone so high. But he was relieved to see the drop this past month. And he says he feels like we will see another drop this month. I hope he's right! June 7th is my next Zometa infusion, so I will have my next tumor marker results by then. If the number actually does go down again we may hold off on the Xeloda for "a while." Because of my age he doesn't want to exhaust all treatment options too soon. So the longer we can hold off with these chemo pills, and still see things changing in a positive direction, the better off I'll be.

I like Dr K's approach to the Xeloda. He prefers to start with lower doses and steadily increase how much I'm taking until we find my threshold for when the worst of the side effects kick in. Then we know what dosage is best for me. This sounds more comfortable and easier to monitor---rather than going through all the potential nasty side effects.

Because I don't have any new symptoms, and the ones I do have are consistent with the cancer and the radiation I've received, Dr K is confident that the cancer is still bone-only. Honestly, I don't know that it had occurred to me that it might NOT still be bone-only. I just thought that those increased numbers signaled more activity in the bones...which they did, but it still made me pause.

Is that why I've had such a bad day today? Even though my appointment went well, I think it still brought some things to the surface. The radiation has beat up my bone marrow pretty good, which is why I have no energy. That should improve over the next couple of weeks. I'm sure that being a lump on the couch all these weeks hasn't helped my mood either. So it was a bad mental health day for me. But Dominic is home, and Brian will be here soon, and I hope to shake this cloud and move into a nice evening and a happy weekend.

That's the latest update from here. I'll be better tomorrow...

Let the sun shine!!

Heinz 57

57 is the change in my tumor marker number for the past month. 57 is a relatively small number compared to the leaps and bounds that thing has been taking the past several months. So 57 is a good number, right?!

Actually...57 is an AWESOME number, because my number DROPPED 57 points!!! Can you believe it?!! And if you really start messing with the numbers then we've gained probably 357 points in the battle...because not only did it not go up another 300 points, but it dropped 57, for a net gain of 357. (ok, I'm stretching it a bit here...but work with me!)

The weather is still cold, and rainy, and super windy, and all-around crappy today---but I just don't care! Last day of radiation, my number is down a bit...It's a BEAUTIFUL day in my neighborhood!

Happy Friday All!

38 Down...

...2 to Go!

It is a cold, wet, windy, miserable day here today. And yet, I feel pretty darn good! I had my bone strengthener yesterday which often leaves me with a little extra pain in my joints. The cold, wet weather usually has the same effect, but my discomfort is minimal today. Yes, I still feel it, but compared to how I was feeling for a couple of weeks there, this is nothing!

I will finish up my radiation tomorrow. I told the techs yesterday I won't know what to do with myself. I've seen them every weekday since March 23rd. That's seven weeks! Dare I say, we're friends now, not just patient/caregiver. We have a lot of laughs in there. I will miss that...but NOT the radiation.

Depending on yesterday's lab results, we'll start the Xeloda either next week or the week after. The numbers they're looking at are just barely in the normal range and they don't want to start the chemo pills until my blood has had a chance to rebound a little bit. I don't know if they tested my tumor marker or not. If they did, I'll post the number here later today or tomorrow. (Again, that's more for my reference than for yours.)

My energy level is still pretty low, but 38 radiation treatments will do that to a person. At least my mood is high! A new, odd pain that I had earlier this week has all but gone away on its own. I'm thankful for that. My first thought was "appendix" and I really don't need to deal with something like that now too!

My brother, Dave, has had a very rough week and wasn't able to get his final chemo yesterday. It's delayed until a complication with his lungs is cleared up. I think he's breathing a little better each day though. I told him I could completely relate to what he's going through. I remember sobbing in the chemo chair back in 2001 when they delayed my final chemo. You get to a point where enough is enough and they've teased you with this final date...and then they burst your bubble. Be tough, Dave! Your "normal" will return!!

Happy Mother's Day to all of the wonderful Mothers out there; especially, my own dear Mom!!! I hope the sun decides to shine on Sunday!

"Pain Flares"

That's what I have...Pain Flares. The discomfort I feel now may have been brought on by any number of things...long ride in the car, super bumpy highway in southern Minnesota, holding Joey just a little too long, or just because the cancer felt it was time to shake things up a bit. I had intense pain on my right side yesterday (and Sunday). So now there's been an alteration in the approach to pain management. Instead of waiting until I feel some discomfort to pop an Ibuprofin or two, I am now on a regular schedule of taking larger doses throughout the day. The pain on my right seems to be under control, but the back spasms are continuing. It may take a little longer to figure those out.

I am officially done with the antibiotics now, so hopefully my tummy will get back to normal. Various side effects with those pills that I won't miss.

I am a much happier girl today than I was yesterday!

Also, for those of you who aren't aware...I have completed the radiation on my left side and have nine more to go on my right side. The date is still up in the air as to when we'll start the Xeloda, but it should be sometime this month.

Smile!

The sun is shining and I feel human today!
Smile Large!!

Hanging in There

Thought I should put out an update of my current situation...

I still don't feel all that great. Yesterday, the doctor prescribed another 7 days worth of antibiotics, at the higher dosage, so we can knock this thing out of my system. We need to have the infection gone for obvious reasons, but also so we can start the Xeloda in a couple of weeks.

To steal my friend, Sheryl's line: I feel like a "waste of skin" these days. Not much happening besides couch time. I am working and radiating and got out of the house a bit this past weekend. I just wish I had more energy to be productive in the evening. I'm sure Brian and Dominic are both tired of seeing me under the blanket in the living room.

I do feel a heck of a lot better than last week...but I'd rather feel like me again!

What's a Body to Do?

Talk about one thing after another...

The antibiotics that I was prescribed were NOT well tolerated by me. I was sick to my stomach all day yesterday and so the doctor took me off of both pills. That was a good thing because it meant no more "orange" in my world, and no more upset tummy. Today I was able to eat and keep it all down. There were a couple of options as to what to do, but it was decided to just not prescribe anything different at that time in hopes that I had gotten enough in my system to clear up the infection. I was ok with that because I didn't like the meds.

Well...this morning I woke up with terrible back pains. I couldn't decide if it was a result of lying around for so many days and my back just hurt from that, or if it was related to this infection. As the day progressed and the pain remained steady (even the Advil didn't take the edge off) I realized this was probably not a good sign. When I went in for radiation I mentioned it to the techs. They felt that I should definitely see the nurse practitioner since the doc was out.

What I learned is this: when a urinalysis is done there is a "sensitivity" test done that tells what drugs will be effective for my own specific case. The nurse was looking for this form, but it wasn't in my file. The lab never sent it. So it turns out that of the dozen or so options of what they could have prescribed, the doc (through no fault of his own) presribed one of only two non-effective drugs! So not only was there absolutely no reason for me to have felt so crummy since Saturday!!...but this also means that I was, essentially, not being treated at all!!

They started me on a new drug today and the hope now is that the infection has not spread over the course of this past week. Come on...what are the chances it hasn't?! The pain seems to have worsened throughout the day with little back spasms going on. It's just so messed up!

My mood is greatly improved today since I'm not nauseous, but I can't seem to find a comfortable position right now. I hope these drugs kick in quickly.

Thank you for all the warm and kind comments, calls, and messages after my last post. I always appreciate it when I check my blog and see a reply!

Trying to take it all in stride

I am 16/20 of the way done with the radiation on my left side. I have, mostly, come through it ok...right up to this week. For the most part I feel fine, but now there are residual side effects with which I am dealing.

Generally, when I have a procedure done or I take a medication the side effects are not visible. In this case, there may be some visual changes. I have developed a bladder infection, most likely related to the small area of my bladder and/or intestines that have just barely been touched by the radiation. While my white and red blood cell counts look good, I am still, apparently, subject to infection. They put me on two different medications to clear this up. One is an analgesic that can cause a discoloring of my skin, my tears, and my perspiration (including staining my clothes). In this day and age don't you think they could come up with something a little less 'obvious?!' So now I will have to wear my glasses for two weeks and wear mostly dark clothes. Ugh!

On top of all of that unpleasantness, my tumor marker has jumped again...now to 979. I had prepared myself for a number right around 1000 so I wasn't totatlly blown away. But it's still disturbing, to say the least. In order that we can more quickly get started on the Xeloda, we are going to start radiating my right side on Monday (along with the left for those remaining four days).

It's very beneficial to me that the sun is shining and the skies are blue. And the fact that this is Easter weekend and we are celebrating LIFE and the AFTERLIFE. I guess you could say this is relatively good timing.

I wish all of you a blessed Easter. I hope everyone is able to be with loved ones and spread the joy of the day with hugs and laughter. Alleluiah!

Things That Make You Go Hmmmm...

It just now struck me as bizarre that something as common as generic Ibuprofin can alleviate the discomfort of something as major as cancer in the bones.

1 Down

I started my radiation yesterday. I was fine all day long. I was fine pulling into the parking lot and sitting in the waiting room. It wasn't until I started walking down the hallway into the room that this cloud of reality settled over me. Wow...I just didn't expect it. The whole time I was laying on the table I was tense and (mentally) uncomfortable. I was there longer yesterday because of the initial set-up. I couldn't wait to get out of there. The techs were great though...always so upbeat and friendly. On the drive home I kept telling myself that this is important and necessary and it will all be good. Only a few tears that I'm doing this for the 3rd time.

By the time I got home, and Dominic was there, he cheered me right up and I knew I could handle this again. I was reminded that this isn't just about me. It's about Dominic, and Brian, and all of my family and friends. Amazing what an attitude adjustment does for a person. I'm ready to get back in there today and do some more "zapping."

The field area is about 10 inches long and maybe 4 or 5 inches wide. It's shaped like New Jersey! I would have picked a prettier state if it were up to me. Brian was surprised. He envisioned more the size of a deck of cards (nasty Queen of Spades size?).

I'll report back with more news as we progress through this. As far as updates on others...Mary Jo has had her last chemo (YIPPEE!) and Dave is half way through his (yippee!).

Have a splendid weekend one and all...and I hope the Floridians are having a great time on their vacation!

Slight Change in Plans

At last, I think I have all the information that pertains to the current course of treatment.

Radiation will begin this coming Thursday. We will radiate my left pelvis first, Monday through Friday, for a total of 20 sessions. Then we'll take a break of maybe two weeks, followed by 20 sessions of radiating my right pelvis.

The Xeloda chemo pills will not be prescribed until after I complete the radiation. Dr S and Dr K sat down and discussed it and agreed that there would just be too many side effects to deal with if I were to undergo both at the same time. Because the cancer remains "bone only" there is no urgency to start the chemo immediately. The radiation is being done first to stabilize some of the bones. Once on the Xeloda I will probably be taking those pills for a year...if all goes as planned.

Thank you for tuning in for this Medical Moment.

Note to self...

March 15th blood draw shows a tumor marker number of 649.

That's about what I expected, I guess. Certainly explains the pains. Time for some radiation and chemo to get this all under control.

Because they're installing and then training on some new equipment, my radiation start date has been pushed off to Thursday of next week. I still plan to stop in Monday and see Dr K regarding the Xeloda, though.

Cancer...it's a load o' crap. That's how I remember the name of the chemo pill (Xeloda crap).

Happy St Patty's Day!

Hola!

I really only have a brief moment to check in and let everyone know that we made it home, safe and sound, and that we had a FABULOUS vacation!! More details to come...

Brian's surgery was successful today and we finally made it home at about 4:15. It proved to be a long, long day at the hospital. But he's now resting comfortably in front of NCAA basketball. I haven't decided yet if I prefer being the patient or the caregiver. There are definite downsides to both!

I have enough physical discomfort now that I feel I'm mentally prepared for all that next week will bring with the radiation and chemo pills. Advil takes the edge off, but I'm popping more of that each day than I care to.

Lots of catching up to do yet. Still have to unpack! And I need my swimsuit so I can float down the lazy river this weekend.

I'll do my best to try and get some vacation photos and stories out this weekend.

Hugs!

Home Again, Home Again

But no Jiggity Jig. I could hurt myself dancing like that.

I know there are many of you out there who have been waiting to hear what we learned at the Mayo Clinic. So here it is...

From the time we arrived at the check-in desk at 7am Tuesday morning, to the time we left the Clinic to go back to our hotel room, it was 3 1/2 hours. Included in that time was checking in all of my scans, reports, pathology slides, and xrays, a blood draw, breakfast in the cafeteria, waiting in the exam room, about 40 minutes total with the doctor himself, and a 20 minute wait thrown in the middle while he consulted with his "boss."

They were in total agreement with all that has been done so far in my treatment, from the very beginning. Their recommendation is to now discontinue the Faslodex and start on a chemo pill called Xeloda. This is something I would take twice a day for 2 weeks, then have some down time of a week or two, and take it again for 2 weeks, etc, etc. As with any form of chemo, there are potential side effects. Only time will tell which of those effects I will experience. We are also going to proceed with the radiation, scheduled to begin daily on March 20.

Over the past week or so I have begun to feel a lot more discomfort in my hips and legs. More understandable when we see that my tumor marker has jumped to over 500 in the course of the past two weeks time! The Mayo docs think that to just switch to another hormone type therapy would be a waste, since none of the others appear to have helped.

I called Dr. Kumar from the road this morning and he readily agreed with this course of treatment. I will meet with him after we're back from Mexico and get things set up and started. While it's a little scary, both Brian and I agree that it's about time we do something more aggressive like this. The Xeloda is, generally, well-tolerated. That's a plus.

While it was a short visit at Mayo, we feel it was worth every cent, every mile, and every minute. We also were able to see my family in Mankato on Tuesday night and had a lot of laughs at dinner and while playing cards with Mom and Dad. THAT's the best medicine of all!!

Thank you for all your prayers and good thoughts! Please keep them coming in full force as we step into this new phase of treatment.



Before leaving Mankato today we stopped up to the Oncology Clinic and wished Dave good luck with his infusion. You know...Dave...the one who's still holding on to all his hair!! Looking good there little brother!!

Happy Brian's Birthday!

This is something I wrote about a year ago. It's what I submitted to the Press when I was interviewed for that article last year. I don't know how many of you ever saw it, so I thought I'd post it here today.



Starting chemotherapy in January, 2001, was a step into the unknown. Cancer itself is difficult enough to face. The horror stories that a person hears about others who have undergone chemo leave you terrified as to what your own experience will be. The Cancer didn’t make me feel sickly, it was just a lump, after all. The chemo, on the other hand, would change every routine of my daily life.

My then boyfriend, Brian, and I had been going out for 16 months when I was diagnosed. Timing is everything! Could our relationship have survived this invasion if we hadn’t already invested that time in each other? We’ll never know that for sure. What I do know is that he was my rock. He went to appointments with me and helped me out in so many ways…sometimes just by sitting quietly by my side…always by making a concerted effort to keep me laughing and smiling.

So it didn’t seem fair that my first day of chemo fell on his birthday. He was insistent that I not change the date. “Get it started so you can get it finished.” And he agreed to be there with me that afternoon. What could I do to lighten the mood for his day?

We were all situated in the chemo room at the Vince Lombardi Cancer Clinic; I was in the big recliner all hooked up to the meds and Brian was on a stool looking over some papers he had brought along for work. I caught a glimpse of “her” through the narrow window pane in the door. Brian was oblivious. Suddenly, here she was! A big hairy gorilla in a yellow polka-dot bikini singing happy birthday! Everybody there enjoyed her singing and poem and silliness. Brian blushed, but I think he enjoyed the attention…I have pictures of him kissing her! It brightened the afternoon not just for the two of us, but for the other patients and the staff as well.

Chemo started, but life went on! There were tears and discomfort and grey days…but there was also laughter, and a new appreciation for life’s details. And we got through it. December, 2001, Brian proposed and we have been happily honeymooning for 2 ½ years now.

My cancer has since returned, and has now spread to my bones. We’re dealing with that in the same upbeat, positive way. No additional chemo has been needed yet, but we’re ready to deal with that when the time comes. Chemotherapy is traumatizing, but attitude makes all the difference, as does surrounding yourself with the right people.



Thanks for being all my "right" people! :)

Here's the Latest

For those of you who don't know, my tumor marker number went up again in the past month. I am now at 349. I doubt that many (any?) of you really keep track of that actual number, but I throw it in here for my own benefit so I can look back and see where I've been and where I'm at.

One of the issues that was weighing heavy on my mind was where to send Dominic next week while we're at Mayo. In a semi-serious tone he asked if he could stay with his buddy, Ryan. So I called Ryan's Mom tonight and she said she would be only too happy to have him there. One more thing I can check off my list!

I saw Dr. Kumar today. He, his nurse, and Dr Schulz's nurse (Dr S wasn't around) all seemed genuinely thrilled for me that I was able to get an appointment so quickly and easily at Mayo. They're all pleased that I'm going there to seek another opinion. In fact, Dr K said I'm almost doing him a favor because he's debating what medication to put me on next (eliminating the Faslodex) and now we can see what they recommend at Mayo. He smiled and laughed when he said that...and so did I.

I get the impression that Dr K and Dr S are not in total agreement about the radiation, so it will also be good to have another opinion on that issue. And Dr K reiterated today that he wants to delay chemo for as long as possible. Chemo for me this time will not be like it was in the past. It wouldn't be 4 sessions and done. It would be more like X number of sessions, take a little recovery break, do more chemo, another break, more chemo, break, chemo, break, chemo, break, etc, etc, etc.

Tomorrow is Brian's birthday. I have to run and finish the "assembly process" of his gift. He's very hard to shop for. I hope he likes this surprise...I'm pretty confidant he will. (can't give it away in case he decides to check in on the blog himself)

I imagine I'll post once or twice more before we leave for MN. Until then...good night, and God bless.

After a Bit of Discussion...

...this is what Brian and I have worked out:

We are going to leave for Minnesota on Monday, the 27th, after Dominic heads off to school. (so, no, he is not going along with us) We plan to just get a hotel room in Rochester for Monday night so we don't have to get up at 4am in Mankato on Tuesday! As of right now, we think we'll 'hotel' it on Tuesday night also. If we need to stick around Wednesday night we'll probably make the trip to Mankato then.

Today I'm searching through all my bags/boxes/containers to see what I have that will most easily accomodate all my many records, reports, x-rays, pathology slides, etc. It's a LOT of stuff! And HEAVY! Good thing I'll have Brian's muscles along. He suggested we get a shopping cart. :-)

It was 15 below zero here when we woke up this morning, and windy. Brrrrr. For oh so many reasons, we will need to just veg on sunny, sandy beaches soon.

Off I go to dig through closets. Find something to do inside today and snuggle up!

Rochester, Here I Come

It's official! I have an appointment at the Mayo Clinic in Rochester at 7am on Tuesday, February 28th. I'm not sure yet if we'll go west on the Saturday, Sunday, or Monday before. There are a number of things to factor in.

So on my lunch hour today I will begin to gather my records. That's a pretty big undertaking with 5 years of information to gather.

I will keep you posted on how the plans work out. They said to plan on 1-3 days. Throw in travel time and we're looking at practically a whole week! Not sure yet what to do with Dominic. Hate to yank him out of school for this, but also hate to be gone a week at Mayo and then gone 10 days on vacation and see him only on Friday.

Anyone available to keep Dominic at your house if we leave him behind while in MN? (he'll HATE that!) Also, Brian has his pre-op for his knee surgery on March 2nd, so maybe he'll need to stay home with Dominic so he can keep that appointment. If that happens, is anyone available for a road trip --- either all the way from WI, or just from Mankato? I don't mind doing the drive myself, if it comes to that. I just don't know that I want to sit alone for hours on end at Mayo.

I'm glad that they're able to get me in before the radiation is scheduled to begin. Our insurance may be fairly useless for this additional opinion, but it will be worth every cent! You can't put a price on peace of mind!!

Stay warm...

Big Wheels Keep on Turnin'

Well, here it is, a snowy, blowy, winter stormy day. No school for Dominic and no work for me! Can you believe it? They closed Muth before we ever even opened today. That has to be a first!

Fortunately, the worst didn't hit until a little later in the morning so I was still able to keep my appt for my CT Scan. I am now the proud(?) owner of 4 new tiny tattoos. They look like blackheads, just like the other three I have. These are used to line me up properly each time we do the radiation. I'm not sure why, but it surprised me when she told me that's what she was doing. I guess I wasn't expecting it today. Reality check!

Mayo got back to me this morning with an additional question regarding my current course of treatment. The woman I spoke to said I should hear back again probably today or tomorrow to actually schedule the appointment. I really, really hope they can see me next week, or early the week after. We're in Mexico from 3/4 to 3/14, I have an infusion the 15th, Brian is having his knee scoped the 16th, and I should be starting radiation the 20th. March is starting to look a little crazy!

I'm off to make some homemade chicken noodle soup and some brownies. What a perfect day to 'play' in the kitchen.

Happy Snowman Building! Be safe y'all!

Because I Think It's The Thing To Do

I went on the Mayo Clinic website today. There was a little button to click to make an appointment. After looking around a bit on their site...I clicked the button. I filled out a very brief form with the most basic of information. That was at about 1:00 this afternoon.

My cell phone just rang and it was someone from Mayo! I gave them my medical history and now they'll call me back within the next few days to set up an appointment. How speedy and efficient!

I'm hopeful that they can schedule me in some time within the next 2 1/2 weeks (read: before we go to Mexico). And I definitely want to get there before we start any radiation here, so I know for sure that we're about to do the right thing.

I'm all jittery at the moment. I don't know if it's good nerves or scary nerves. Probably a combination of both.

So head's up, those of you in Mankato! We may need some overnight accomodations again soon!

I Can't Begin to Imagine!

I got a call this morning from my friend, Sheryl. I could tell by the shake in her voice that this was not going to be happy news. The husband of a friend of ours was killed in a snowmobiling accident last night! Every hair on my body stood on end. Some of you know Dave, for sure. He's the husband of Jody, a step-cousin of Brian's. They have two little girls at home. I can't seem to get this awful image out of my head. How does one even begin to deal with such an unexpected, overwhelming, major life-altering loss?!

I'm doubly freaked out by the fact that Brian is right now, at this very moment, up north snowmobiling with "the guys." I know he's safe and having fun and in no way any further jeopardized than he was before Dave's tragedy. But it makes my worry meter go way, way up!!

Someone asked me if I'm still planning to drive to MN today. Sure I am. I told her that, if I didn't, I would find myself driving up north and dragging Brian home instead. (And we all know that would just get ugly.) So I'm going to MN to see my family there and hug them all. And I'll breathe a HUGE sigh of relief when I see Brian at home on Sunday.

My heart goes out to Jody and her little ones, and all of their family and friends. What a sad, trying time for them all...and what a hopeless, helpless feeling for those of us who want to reach out in some way and ease their pain.

Life's too short. Hug your loved ones extra tight today!

At Last!

Finally my phone rang and it was Dr. Schulz. He had semi-legitimate reasons for not calling before now, so he's mostly back in my good graces.

So here's the plan...

Next Thursday, the 16th, we're going to do the CT Scan to get a closer picture. Dr S and Dr K agree that radiation is warranted, along with the Faslodex injections. I am not symptomatic enough to warrant the IV radiation (Quadramet) at this time, so we will be doing "only" surface radiation. The results of this new scan will determine what side we'll radiate first. They seem to have great faith that the Faslodex is going to kick in at some point and result in some improvement.

No radiation will actually occur until after we return from sunny Mexico! That is a relief to me. I don't want to leave the country not knowing what side effects could occur from this.

And that's that. Scan next week, radiation starting mid-March. In time, I'm sure I'll have more details to share regarding the radiation.

Thanks, again, for waiting this out with me!

Grrrrr...

Well here it is Thursday and I still have not heard back from Dr. Schulz!! I just now called again. He is not in yet, but his nurse, Judy, said she will "force him" to call me. I like Judy. I am confident she will get the job done!

Stay tuned...

Antsy

No real reason for this post. Just feeling antsy waiting to hear from Dr. Schulz (or someone!). I called. Unfortunately, I had to leave a voicemail. But maybe that will get things moving.

Ring phone, ring!

I'm just ready to get going on something if we're going to get going on something, ya know? We leave on vacation in less than four weeks now. Tell me if there will be some sort of action now, or when we get back, or not in the foreseeable future.

Ring phone, ring!

To Quote Yosemite Sam...

"Blast it!"

Osteo-blast it, that is. It's all about my osteoblasts.

I told Dr. Schulz that I felt like I was back in middle school cuz all these terms were coming back to me from biology class. I learned a lot about my cancer in this 1 and 1/2 hour appointment today. (and here I thought it would be a quick in/quick out)

It's amazing how a bone scan is good for some things, and PET scans are good for other things, and MRIs are best used for some situations, and CT scans are best for other situations. It's like a game show...which scan has Carol NOT had done in the past three months? The answer is (D) CT scan. But it looks like I will probably have one done next week.

My cancer is not of the Lytic variety. That means it doesn't look like swiss cheese. It isn't "eating" away at the bones. The Zometa is intended to prevent lytic lesions. Instead, my cancer is osteoblastic, meaning my bones are growing in odd, bad ways. While it seems like this should mean I have more bone and they should be stronger, that is not the case. Bad bone growth weakens the bones.

What I also learned today, from my MRI, is that there are a LOT more spots than what we thought. Most of them are small, but quantity isn't good either. And, strangely enough, the left side appears worse than the right side, even though the PET scan shows the opposite and my only really sore spot is on my right.

Dr. Schulz feels that it's best if we do something sooner, rather than later, in terms of radiation. He wants to wait and talk to Dr Kumar on Monday, but he's leaning towards doing a CT scan next week from my breast bone to my knee caps. You see, there's even cancer in my femur bones that we didn't know about. The MRI films were very interesting to look at. It shows me in layers; one set layering me from top to bottom, and one layering me from back to front.

Radiation options are as follows:
1. radiate everything all at once, which can drastically lower my blood cell counts and cause greater discomfort (gee, that doesn't sound like much of an option)
2. radiate one half of me, take a month or so off to allow for recovery, and then radiate the other half (maybe more tolerable?)
3. do a one-time intravenous radiation dose at the hospital, which could drop my blood cells significantly, but because there are so many spots in so many places it might be the most all-inclusive

Dr Schulz knows we're going to Mexico in March. We may or may not start radiation before the trip. He would hate for me to fracture something while south of the border. It would spoil our vacation, to be sure, and where would I go for treatment? We debated which of those two concerns would be the greater!

Nothing has been decided at this point. Like I said, Dr S and Dr K need to consult on Monday. I will hear back from Dr S either late Monday or on Tuesday. I feel like radiation is a "good" option for me. Yes, my symptoms are extremely limited right now, but I can't help but wonder where I'd be now if we hadn't done something to treat my mostly asymptomatic neck, back in 2004. And as Dr Schulz said...we would hate to have something fracture, need to have surgery done to put in a stabilizer of some sort, go through recovery time, and then do radiation. Hopefully, by doing radiation now, we can avoid a fracture in the first place.

Does all of this make sense to everyone? Oddly enough, the appointment was quite fascinating. Dr Schulz is an intelligent man and covered all areas of concern with me. It did seem like we were discussing someone else, or like it was a classroom situation though. I think I'm ok with all of this. I don't feel panicked or freaked out in the least. Maybe because this feels like an "active" approach? (but wait, we weren't going to focus on that anymore, were we!)

Blast the Osteoblasts with Radiation, I say!

The Hip Bone's Connected to the...

The really, really GOOD news is that my cancer remains bone only! It does not appear to have spread to my lungs, or liver, or any other organ!

Ok…let’s all breathe a huge, collective sigh of relief…

Now, the not-as-good news is that there appear to be some new spots on the bones, and there appears to be some intensifying of some old spots. This is now our focus.

More good news is that my neck looks to be much better as a result of the radiation we did after the last PET scan. However, my hips look to be worse, especially the right one. I will have an MRI of my pelvis done on Monday and I’ll get the results of that on Thursday with the radiation oncologist, Dr. Schulz. He will determine if radiation is warranted at this time.

I’m going to start seeing Dr. Kumar on a monthly basis to track things more closely. If, for example, my number jumps to a 300 in February we probably won’t change things too dramatically. If the number jumps to a 600, we may have to proceed to our next option. It’s more about the number trends than the actual numbers. When I asked what this number caps out at, he said he has a woman who is at 2800! It’s all so mind boggling.

There are some other hormonal options to pursue, and some we can even revisit. There may be another biopsy involved, if the numbers do keep going up, to confirm the hormonal receptivity of the cancer. Strangely enough, that is a factor that can change.

I guess our biggest challenge is learning how to deal with a chronic disease. While we feel like we just have to sit back and wait, we don’t know what we’re waiting for. So that mindset no longer works, or applies here. It isn’t a matter of ‘doing’ or ‘not doing.’ It’s a matter of accepting that this cancer is here to stay.

Our goal will always be to preserve quality of life for as long as possible. Without new symptoms there’s no reason to jump the gun and fear the worst…which is definitely what I was doing this whole week. I’m sorry if I dragged all of you along on the fear train! BUT…by telling you of my concerns and making you aware of what was going on, it started those prayer chains a rollin’, and you can’t tell me that didn’t play a role in today’s good news!

I’ve said it before and I will continue to say it…I couldn’t get through all of this without the prayers, love and support of all of you! THANK YOU from deep within my bones.

FYI

I have an appointment with Dr K on Friday at 2:30 to get my scan results. We're VERY thankful for this so we won't have to fret and make ourselves crazy all weekend long!

I'll try to blog as soon after that as possible so all of you have the results as well.

As a point of reference: the last PET scan I had was in June of 2004. It was at that time that we learned the cancer was in my bones. But we had to do an MRI of the "hot spots" to determine the extent of the cancer and verify it was for sure in the bones at those locations, not the tissue or any organs. What this means is that after the PET scan there could likely be another scan scheduled to get more specific information of any problem areas.

I'm doing pretty good today. Keeping very busy here at work, which helps. I'm a little worried about Brian. Say some extra prayers for him please! I haven't mentioned any of this to Dominic yet. I'll wait until at least Friday afternoon when we'll maybe know a little more. Why should his 15-yr-old brain have to toss this around all week?!

Wishing all of YOU peace!! I have a better idea what it's like for you guys to feel pretty helpless in trying to help me now that I have those same feelings about Dave. Thanks for sticking with me!!

Love to all

Spiked!

Not a football in the end zone…
Not my hair…
Not the punch (although a drink right now sounds pretty good!)…

No, I’m referring to my tumor marker number. Spiked…upward…largely…badly…

I’m now looking at a 290.9. That’s more than double what it was three months ago.

We’re going to do a PET scan on Thursday afternoon to find the hot spots. The indication is that the “activity” we saw on the bone scan in November was not significant enough to believe that’s what’s causing this elevation in the numbers. We’re going to (hopefully) confirm that things have not spread elsewhere in my body.

I got the number at about 9:00 this morning but was waiting to blog until after the nurse spoke with Dr. K. She just now called, at 3:15.

I’ve been dreading typing this up all day. I HATE to put this out there for my family to read. There’s enough going on already with Dave starting his chemo on Wednesday!! I’m sorry. I tried to be unselfish and hold off until after we see the scan results, but I just couldn’t. I need the prayer chains in motion asap. And too many of you knew I was getting results today, so if the phone started ringing I would have had to start telling all of you anyway. No news should be good news, and this would not have been good news to throw at you later, rather than sooner.

I’m really glad I didn’t call from Vegas to get my number. That would have sucked all of the fun right out of our time away.

I will keep you posted…

Am I Pink

What a difference a week makes! I AM pink! Pink as in healthy; pink as in my 'survivor' color; pink as in my cheeks are pink (not my peeks are chink, it's a little early in the day for that).

I look back at where I was last Friday and can't believe what opposite ends of the spectrum I am at. I haven't been that low in a very, very long time! But...the flu seems to have been good for me. Not only did it give me a thorough flushing physically, but I seem to have been flushed out mentally and emotionally as well. I felt great this whole week. I have renewed positive energy and attitude and laughter. I don't feel like I'm dragging around a pack on my back.

I didn't realize it until the other day, but I think I've been loaded down with negative baggage ever since my bone scan. I honestly think that in the back of my mind I was focusing on the cancer "activity" in my hip and shoulder blade. I became overly cautious and worrisome about what I should and shouldn't be doing. Enough of that! Now that I realize what I was doing to jeopardize my own mood I can toss it aside and feel light and ready to roll into this brand new year!

Wednesday, 1/11, was NOT a shithouse. It was a great day! I had lunch with 9 wonderful women. I took chocolates to the VLCC as a thank you to them for making my 5-year Cancer Survivor anniversary possible. I took a deep breath, thanked God for all the many, many supporters I have, and vowed to celebrate even bigger on my 10-year anniversary!

Reports on my brother, Dave, have been very promising. The cancer is contained to his neck and chest, which is good. No spreading to other organs or distant body parts. He'll finish up with a few more tests next week and then the chemo will commence. From what I can tell at this distance, he has the right attitude and should come through all of this just fine. Please keep him in your prayers!

Offer up some extra prayers for me too, please, for next week's appointment. We'll do another blood draw and have high hopes that my tumor marker number has come down.

Happy Friday the 13th!

Off to get my hairs cut...

Am I Blue

Not a question, more of a statement.

And I am blue. Really blue. Sadly, pathetically, deep down, no sign of "wonder woman" here, blue.

Still home with the flu, although feeling quite a bit better, as far as that goes. Brian left to go up by the Ludens to snowmobile and Dominic is overnight at a friend's house. So I'm sitting here feeling really lonely, and feeling a little sorry for myself. I'm sure I just need a good night's sleep. But I've slept so much the past few days and watched far too much mindless tv, it's just plain sad.

I hate these breakdowns because they make me feel so weak. And, of course, they generally hit when I'm not feeling so good physically, so my defenses are down.

Three days to get over the flu is just ridiculous. I have things to do with my life and I can't just waste away three whole days like this. It makes me feel cheated of 'time.'

The house is too quiet. I need to go call someone now before I go a little crazy. I hope I can find one of you home on a Friday night!!

Sh!thouse

111 --- My mother-in-law taught me that a 111 in bowling is called a “shithouse.” I have learned, over the course of time, that that number applies to other pretty lousy things. For example: 1/11 (2001) I received my initial diagnosis of breast cancer. Now, on 1/11 (2006) my youngest brother, Dave, will travel to the Mayo Clinic in Rochester to have some tests done. You see, Dave and his wife, Kate, received one of the worst possible Christmas “gifts” this year. Dave has been diagnosed with Hodgkin’s Disease.

As a result of this heart-wrenching news, we have added a fourth member to the “Breiter Cancer Survivor Group.” But we welcome him with open arms! And SURVIVORS are what we truly are!! The initiation procedure really sucks, but once you get past that, it’s a good group with which to belong. (And my brother, Jerry, told Dave we serve cookies. Hmmm…I must have missed those meetings.)

The Hodgkin’s is a certain diagnosis. The testing to be done at Mayo is to re-confirm the course of treatment. There will be various scans, blood tests, etc. performed over these next couple of weeks. Chemo will most likely begin the week of 1/17 or 1/23.

My wish/hope/prayer is that this experience will really become a “gift” for Dave. There are many ways to face and cope with a cancer diagnosis. There are many ways to get through the situation. Maybe, down the road, he’ll be able to look back upon these next several months and find that some further good has come into his life as a result of this “bump in the road.”

Dave’s wife, Kate, is a strong woman. She has proven that time and time again. For those of you who haven’t made the connection, these two are parents to Mighty Mark, and Baby Joe. (Happy Birthday Marky…born 7 years ago today at 1 pound, 7 ounces, he will forever be our new year’s miracle!!!) So, you see, Dave has a great support system right under his own roof. Kate is there by his side, and his two adorable, funny, lively children will help to keep the smiles coming.

My very wise father hit the nail on the head when he made the observation that ‘it seems to be easier to have the cancer than to have a loved one be diagnosed with cancer.’ This situation is very difficult for me to come to terms with. It’s not fair to Dave. It’s not fair to his family, or our family as a whole. BUT…fair or not, we are SURVIVORS and I will do everything I can to help Dave and Kate get through these trying times.

You know what to do! And you, obviously, know how to do it incredibly well! Please get those prayers heaven sent. They can only help to make a lousy situation a little bit more tolerable.

I wish you and yours HEALTH in 2006!

Merry Christmas

There...I said it and I meant it! Merry Christmas!! If you're offended by that then you needn't bother to return to my blog. I don't say it to offend or to put off anyone. I wish everyone very happy holidays, whatever holiday you choose to celebrate (or not). But I happen to celebrate Christmas, and so my wish is that everyone celebrating this particular holiday will have a most blessed Christmas season. I LOVE this time of year!

What a week this has been...! On Tuesday night Dominic and I went to the Lenny Kravitz/Aerosmith concert. It was awesome, to say the least. We had such a great time. The music was wonderful, the lights were amazing, the energy was unbelievable and contagious. We "rocked out" 'til I think I broke my rocker. My body ached for two days after...or more.

And two days after the concert I had my 41st birthday. So are the aches from age, cancer, bad shoes, or a combination of all of these? With this type of question it's usually safest to go with the 'D' option: all of the above. But it was all soooo worth it! Would I see a concert again with my teenage son? Absolutely!!

I thank all of you for your sweet birthday well-wishing. The cards and emails and phone calls are always greatly appreciated and make me feel special. I had a very good day at work, thanks to the flower delivery man, my friends and co-workers, lunch with Deb, and emails from friends and family in multiple states. Unfortunately, by the time I got home from work I was feeling fairly crummy and spent the evening on the couch under a blanket. Poor Brian and Dominic had hotdogs for supper and I had saltines. We didn't even cut the birthday pie (oh my gosh! and we still haven't!!). So while it wasn't the way I would have chosen to spend my birthday night, it was still a very good day. Thank you!

Last night was Brian's company party and tonight is my company party. So this morning/afternoon I'm laying low and taking it easy. I don't like that I get so tired and achey so easily anymore. But that's the way it is, and I realize I'm quite fortunate in that it could be a whole hekuva lot worse.

This Wednesday brings another infusion and injection. If any of you are ever interested in stopping in while I’m hooked up at the VLCC, please do so. What a super surprise that would be! (this week my appt is at 1:00) Sometimes I like to just sit there and read or watch TV or veg. Other times I spend that 1+ hour reflecting on the cancer. And sometimes I wish I had someone there to keep me company. I realize it’s tough to find an hour in a week to, literally, just sit. But if you’re ever so inclined you would be most welcomed by me, the nurses and the staff.

I guess that’s all I have for today; other than to request your continuing prayers for me, more prayers for Mary Jo (who seems to be handling the chemo pretty well, but now messed up her back), and for my sister-in-law, Bert, and her family who suffered a very sad loss recently. I think most of you know that I am a firm believer in the power of prayer. Keep up the good work!

And MERRY CHRISTMAS!!