Sunday, December 18, 2005

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!!

Tuesday, November 15, 2005

HOPE

This beautiful and inspiring poem was forwarded to me by my sister, Sue. I've never seen it before and had to share. The last line, in particular, brings all of us together. That's the strength of hope...sharing it with others!

Do you know what hope is? It's magic and it's free.
It's not in a prescription. It's not in an IV.
It punctuates our laughter. It sparkles in our tears.
It simmers under sorrows. It dissipates our fears.
Do you know what hope is? It's reaching past today.
It's dreaming of tomorrow. It's trying a new way.
It's pushing past impossible. It's pounding on the door.
It's questioning the answer. It's always seeking more.
It's rumors of a break. It's whispers of a cure.
A roller coaster ride. Of remedies, unsure.
Do you know what hope is? It's candy for the soul.
It's perfume for the spirit. To share it makes you whole.
Take my hand...come... Let's share this hope...together...

No Longer Queasy

I feel a hundred times better this morning than I did yesterday at this time! In fact, all morning long, yesterday, I had this rolling stomach from nerves. Brian said his was the same. I didn't eat a thing until after the appointment when Brian and I went to lunch. It was sort of like a "de-briefing" lunch. Not only did I want to be sure that we both heard things the same way, but I needed to show him the written report so he's aware of the points that Dr. Kumar did not touch on. The report summation emphasizes the right pelvis and scapula as I mentioned yesterday. Those are the areas with the greatest amount of activity.

The report also mentions those areas of my spine that we knew about from last year's scans. The good news is that they're described as only "small and moderately intense." The one item that keeps jumping off this sheet of paper, though, is "mild heterogeneity seen through the skull." We've never talked about my skull. Sure, we did MRIs of my brain, but nothing was ever found. It's kind of a passing comment within the report and it is not mentioned again in the summary. Should I be concerned? Dr. K doesn't seem to think so. In fact, overall, he's pleased with the results. And so are Brian and I.

BUT...as is always the case after these appointments...I am still worried. In time, that worry will fade until it's time to see Dr. K again, in January, and then it will flare up again. He assures us that there's no need to worry at this point. That things are behaving about the way he would expect them to. And I realize that we aren't just sitting around doing nothing. We're continuing with the bone strengthener infusions and we're still administering the injections. But it feels so "inactive."

I was thrilled to hear my friend, KB, say yesterday what I always feel. "It would almost be better to get some bad news that we can react to, than to just have to wait." Some of you are going to have a hard time wrapping your minds around that one. But here's the thing...chemo is perceived as a killer of cancer. If, by undergoing chemo, we can start to kill off these nasty cancer cells, what are we waiting for?? That, to me, is an extremely active approach! Bad news might move us to a new level where we can sit up and DO something.

Thankfully Dr. K is always there to remind me that avoiding chemo as long as possible is key. It isn't the miracle yet that it may become some day. Chemo this time around won't be like the last time. It will be more intense. It will have a longer recovery time. And, I suppose, it's a sign that while "the end" is still a long way off (and that's a relative term, to be sure), you can begin to see it coming over the horizon.

Like I said...I feel a hundred times better today than yesterday. And already my worries are beginning to fade. But it remains a frustrating situation. I've mostly come to terms with that, but the waiting is difficult on some days. Waiting to see what these injections can do is my primary "action" right now.

With Thanksgiving just around the corner (can you believe that?!?) it is an obvious time to say thank you to all of you who take the precious moments out of your day to check in here and see how I'm doing. Thank you to all of you who say your prayers on my behalf. Thank you to those of you who reply here, send an email or call to let me know that you have checked in. Thank you for being the best family and friends by whom anyone in my situation could hope to be surrounded!!

Monday, November 14, 2005

What Do We Know?

I have to keep this brief, but wanted to at least post the basics for right now.

For the most part, what we learned today was "good news." In fact, it was better than I was expecting. So that much is a relief.

My neck appears to be about the same, but there are spots on my shoulder blades that were there before, but are more pronounced now. My right hip has some "increased activity."

Still too early to know what the injections are doing for me. We'll check numbers again in January. If there's an increase to 200 or so, then we'll schedule another type of scan at that time.

For now, we continue on as we have. I'll take over-the-counter pain relievers as needed, which are still 'working' for me to relieve the discomfort.

I received a copy of the report as it was dictated and have some words I need to look up yet...like "heterogeneity"

That's the scientific side of things. Back to work now. Will post more later on what this means to me, mentally and emotionally.

THANK YOU for all of the prayers and good vibes!

Wednesday, November 09, 2005

Just a Quick Note...

The scan was very easy today. No pain, no noise, quick. They gave me a sneak preview, and all I know for sure is that there weren't black spots all over my body, which is a good, good thing!! No way I could interpret anything else though. I have no idea how to read an x-ray. We did do an extra pinpoint view of my neck/thyroid since it still shows up as the darkest area.

My follow-up appointment with Dr. Kumar is Monday morning at 11:30.

Tune in after that for results...

In the mean time, keep those positive vibes coming my way. (And send some out for Mary Jo, also, who will have her lumpectomy on Friday.)

Monday, October 31, 2005

Where has the time gone?!

I must apologize. I've been meaning to enter a blog. Each day I think to myself "I better get on there and blog!" but it just hasn't happened. Now I look at the date on my last post and can't believe all the time that has gone by. So I apologize to those of you who keep checking in and finding nothing.

My oh my...what has all been going on these past (almost) two months?

I did eventually recover from all the fun and many steps in New York City! Then on October 22nd I put on some more steps and walked in the Cancer Walk at Road America. I had some doubts as to whether or not I would be able to complete the walk this year. But I DID!! It was cold and rainy and a rather unpleasant day...but surrounded by the warmth of friends and family, and with walking stick in hand from this summer's Rally For A Cure, I walked the walk and climbed the hills and fought my way to the end. It was, literally, a pain in my neck (and hips)but it was well worth it. What a great sense of accomplishment. THANK YOU to my fellow walkers!! There were approximately 1900 walkers out there, including 'my' team of TEN! THANK YOU to all of you who sponsored me. I was able to raise $820 myself!!

Today was such a MONDAY!! Grrrrr.... Dominic had a great weekend in Minnesota (helping Joe paint and move, and visiting the U of M campus in Minneapolis) but he came home coughing even more than when he left. So I did a lot of running around getting him in to see the doctor. Our fear was another bout of pneumonia but, thankfully, it's "only" bronchitis and an ear infection. He sounds like he's coughing up a lung though. THREE prescriptions later, he was back in school and I was back to work.

It was also a MONDAY because I called to check on my tumor marker number from last week's blood draw. Now, Dr K warned us that the number would probably still be going up because the injections haven't had long enough to really do their thing yet in my system. The recommended course of treatment is to get a double dose of the injection the first time. But it's very expensive and the insurance companies won't ever approve it. How stupid is that!?! I had a number like maybe 105 in my head. But it came back as a 139 instead. That's a new high for me. It sucks. Are the injections doing what they need to be doing? We still won't know for a couple of months maybe. But we already had a bone scan scheduled for next Wednesday, so that should give us some answers...again, maybe. Another thing that Dr K was good to warn us about is the fact that, now that the Zometa has been in my system for over a year, it may highlight some cancer spots that we haven't known about before and these could show up with this updated scan. Some spots may be new, some may have been there a year ago but we couldn't see them.

It was dark when I left work. But, surprising even to me, the temp was fairly tolerable and the lights were kind of pretty. I intentionally drove down 25th Street, as I've come to do every Halloween now. I love to see all of the kids, and many of the adults, all dressed up in their costumes and going house to house for their treats. It made me smile! I told Brian, it's the one day of the year that I wished we lived in town. BUT...we had a record number of trick-or-treaters at our house tonight. It was fun!

I'm certain there were many, many events that happened since I last blogged, including a visit to Mankato, and visits from Mankatoans here. I feel badly that I didn't blog those things. I'll try to do better!

When you're saying your prayers, please throw in an extra one for Mary Jo, who recently found out she has breast cancer. And include her family in those prayers as well. I often think that the worst part of this journey is the first month or two when you feel as though you're drowning in a sea of information that can't possibly apply to you. When the shock/denial/disbelief wear off, you start to face the reality. It's at that point that you embrace this new chapter in your life and boldly wear your new title of SURVIVOR!



One last, kind of important thing. I found out that I was wrong about something. I don't know if I was given misinformation last summer, or if I just heard wrong. But...my cancer is not HER2neu positive. The Herceptin that has been in the news does NOT apply to me and would not benefit me. That's, actually, a good thing. HER2neu positive means it's a very aggressive cancer, and mine seems to be aggressive enough, thank you very much. Plus there can be some serious, nasty side effects associated with the Herceptin (like congestive heart failure!). That is all...

Thursday, September 08, 2005

And so we continue...

OK...where were we? Ah yes, fighting our way through the festival to get back to Broadway. The sights you see in NYC! It was great though...I love that kind of thing.

Once we caught our breath on Broadway we started hoofing it south. We weren't 100% sure as to how many blocks it was to Macy's, but we figured we could always cab it back if needed. We stopped to grab a cold drink and some lunch at another cute place on one of the side streets. There our 12-year-old looking bartender spoke with a Scottish accent. We came to realize that no one we asked is from New York. Everyone is a transplant from somewhere else. The true melting pot!

Macy's was a zoo! You see, they have what's called "tax free week" around Labor Day weekend every year. It's supposed to be an aid for the back-to-school shoppers. The massive size of the store, aside, there are all these nooks and crannies and levels within the same floor, etc. The bank of elevators were packed non-stop. I kept thinking of a Jerry Lewis movie where there's a mad rush onto and off of the elevators. Everyone is of the belief that you can always fit 'one more' person. The store itself was, in my opinion, run down and old. Escalators weren't working, it smelled musty, and was in serious need of updating. I, honestly, was not impressed. Except for the very nice salesman who helped me with my boot purchase. He was great! Very accomodating and patient and happy. KB was successful in finding things that fit her petite size so it was a worthwhile spree for her.

With an early show time at the comedy club, we started our walk back to the hotel. We actually walked a block or two out of our way to avoid some of the festival crowd. We went to our room and managed to sit down for only five or ten minutes before we had to get ready to go out again. We, fortunately, took the outside crowd into account when planning how long it would take to get back over to Broadway. Our 8-minute walk took us closer to 20 minutes instead.

Caroline's Comedy Club was not exactly what I expected. It's smaller than I envisioned...and it's located completely underground! But what a riot!! We laughed so hard at the host, the two amateurs, and then the headliner. We definitely enjoyed our time there! If only I could remember the jokes --- I'm so bad at that. I just remember laughing A LOT!

Call us crazy, but our post-show dinner was at the Olive Garden, one block down. We just craved their salad and breadsticks so badly! It did not disappoint. And, of course, this being New York City, we HAD to have some cheesecake before we left town. We found a great deli and sat and indulged ourselves. When we walked out the door, satisfied, we came the closest to experiencing any violence on our trip. Policemen were hustling all around and took off running in one direction. Even in NYC everyone stops to look and see if they can find out what's going on. Two of New York's finest came running back and headed down into the Subway. That was it. No idea what the commotion was all about. No idea where they all headed. It was back to "calm" after those few moments.

Walking a different way back to the hotel we happened across Radio City Music Hall, I almost got run down by a speeding cab, and the festival folks were gone...but their nasty mess remained. For whatever reason, there were no extra garbage cans put out for this huge gathering. So all the trash and half-eaten food and cups and wrappers, etc, were just piled up alongside the buildings. Blech! The street sweeper was moving through though, and you could see that progress was being made.

We got up to our room and felt "complete." We had done it! We had survived the city. We had seen all we wanted to see and done all we wanted to do, with the exception of playing cribbage in Central Park. Next time...

Monday morning we woke plenty early, showered, packed up, ate our bagel with cream cheese, and jumped in the cab that happened to be waiting right out front for us. We caught our last glimpses of the city on the way to the airport. Love that skyline!

One more laugh in the city...our cab driver appeared to be from a far eastern country. He said he lives 6 months in NYC and 6 months "over there." We were, obviously, in the back seat, chatting about our adventures and now the trip home. The driver had seemed friendly and was somewhat conversational at the beginning of the ride. We were nearing the airport when he looked in the rearview mirror and asked, in his heavy accent, if KB was my "friend" or my "lady." I laughed!! I said she was my friend and I was going home to my husband. He laughed too. I should have told him he could find himself in a world of hurt if he asked the wrong people that question! LOL It was funny to me because before we ever left I had commented that I wondered if people would think we were a lesbian couple!

Two minutes before we were to board our plane they announced a delay and we ended up on a plane that went to Minneapolis first, and then to Milwaukee. We were fearful our luggage wouldn't follow us. Much to our dismay, it turned out that our original flight left an hour and a half late with some of the original passengers on it. They beat us to Milw, but we had their luggage on OUR flight. Inconvenient for all, but we still got home at a reasonable hour...and I was still able to have supper with my family.

I heart NY! I thought I would, but I heart it even more than I imagined.
BUT...I believe it's a city to which you must travel with the right person. KB and I were incredibly compatable and had the same agenda. It worked out sooo very well for us!

There were a lot of other places that were pointed out to us...homes of stars, TV and movie locations, etc. But I can't give you all the details (even though it would seem like it from the length of this thing).

I decided that this account is as much for me as it is for those of you who are reading it. It's my diary of the memories we made, me and my dear friend, in New York City. I hope it gives you some sense of our experiences. I'm happy to have it all written down to be able to come back to time and time again.

And now, my fatigued body will hopefully do some catching up.

It's good to be home.
It's good to be back where I belong.
It's all good...

Wednesday, September 07, 2005

33,150

Now THERE'S a number to be proud of! That's how many steps KB and I logged on the trusty pedometer on Sunday. We walked miles and miles every day, but Sunday was the record.

New York was FANTASTIC! We loved every minute of our time in the Big Apple. The sights and sounds and languages and buildings and restaurants and stores and people and music and food and lights and...and...and EVERYTHING!!

We ended up flying to NYC on a tiny plane. 12 rows, 2 seats on each side. But, you figure you're flying into a large airport in a huge city, things will be overwhelming from the moment you step off that plane. Boy was that a misconception. We exited the plane, down the steps, right onto the tarmac! At first I thought we were in the wrong place. We grabbed our luggage off a cart and proceeded through a hole/door into an unpleasant stairwell where we had to carry our luggage up a flight of steps into the terminal. Welcome to New York! It was so unexpected that it was just funny.

By the time we caught a shuttle, drove into the city, dropped a few other travelers off and checked into our hotel it was about 11:30pm NY time. I called home to let Brian know we had arrived safely and then it was off to Broadway! We were only 1 1/2 blocks from Times Square. It was a perfect, central location. And extremely well lit, to say the least. WOW! Times Square at midnight on a Thursday is a bustling place. But KB couldn't find anyplace to eat so she grabbed a cheeseburger at McD's! LOL---I never did ask her what she paid for that. We strolled a little way down Broadway and saw the only famous people we would see during our stay. The folks from Entertainment Tonight were doing some filming of some sort so we saw a number of their stars, including "Cojo."

By the time we bought our two drinks each ($34, not including tip!!) we decided it was time to hit the mattresses so we could get moving in the morning. We managed about 4 hours of sleep that night.

I highly, highly recommend the Grayline double-decker bus. We hopped on board and went right to the upper deck. We decided to do the entire downtown loop first and learn all we could about where things were located. It was entertaining and educational and we learned a lot of NY trivia and history. Our tour guide's name was Dominick so we knew he would treat us right. By the time we started going around the second time though, his jokes were getting old and, of course, he was repeating himself. But we hopped off in Greenwich Village and started roaming the streets on foot. By this point in the day it was getting hot (89 degrees) and we were thirsty so we had lunch at the Caliente Cab Co Mexican Cafe, along with a tasty, frozen margarita. It was the perfect answer to our thirst. We were refreshed and ready to carry on! We wandered the streets of Greenwich Village a little longer, but never really found the cute little shops we were in search of.

Our next hop off point was at Ground Zero. We went through St Paul's Chapel where so many of the firefighters found rest and nourishment during the terrible events of 9/11. It was somber and reverent and quite touching. It has become a museum of sorts and really tells the tale of that awful day. The chapel sustained no damage as a result of the Twin Towers coming down. Miraculous! The site of Ground Zero itself is huge and there's much work to be done there yet. But life goes on all around there with many pedestrians and constant traffic.

We walked from there down to Battery Park and saw the Statue of Liberty from a distance. By that time we were wearing down and it was time to head back to our hotel before the tour bus stopped running. We rested briefly, freshened up, and headed over to Broadway for dinner (at Bubba Gump Fish Co.)---but first we stopped and both bought new watches at the Swatch store on Times Square! After dinner we bought a few souveniers and made reservations for Sunday at Caroline's Comedy Club. By the time we hit the hay that night, we had logged 25,550 steps for Friday!

Saturday morning we were back on the tour bus, but this time we were headed in the opposite direction. We toured the upper west side, Harlem, and the upper east side. Gorgeous buildings and churches and museums. It was a little chillier on the upper deck that morning so we grabbed a cup of coffee and got back on the downtown tour bus we had ridden the day before. We hopped off and shopped on the "Ladie's Mile" --- it had to be done! Then we went to SoHo and eventually wandered into Little Italy where we had lunch at an outdoor Italian cafe. It was great fun! We walked and walked some more and finally found a place where we could hop back on the bus.

Now it was time to head back to the hotel again because we had tickets to see Stomp that night at the Orpheum Theatre in the east Village. We decided to be adventurous and take the Subway! So we actually ate at Grand Central Station (Ha!) and then hopped on the train. (Good thing we had enough sense of direction to know the concierge at our hotel had told us to get on the wrong train!!) There was a certain sense of relief when we hit our stop. Not because we felt un-safe, but because we were hoping to get to the right location. We were plenty early for the show and went to this really dim, artsy, cozy bar and restaurant where all the employees were speaking French to each other. Stomp was wonderful!! It was a small theatre and we were in the 3rd row (translation: we were practically sitting on the stage). Amazing show! Because of the late hour, we opted to take a cab back to the hotel. 25,400 steps on Saturday!

Sunday was to be our biggest shopping day. We did shop a lot, but, by NY standards, we bought very little. Stores didn't open until 11 or noon though, so we first went to Central Park and took a horse drawn carriage ride. Our driver's name was Antonio and he was a lot of fun. We picked him because he looked like he had personality. He was singing and dancing on the sidewalk. He also quoted us 6 bucks less than the first, dull guy we asked! Antonio is a 3rd generation driver, he's married off two of his three daughters and he was all too happy to tell us about their suitors. He had a thick Italian accent and made us laugh a lot.

From Central Park we went to Bloomingdales and shook our heads at the outlandish prices on things. We had wandered too far into the store and it literally took us several minutes to find our way back out! We decided to go in the direction of Macy's next. Our hotel was on the way and we were going to drop some things off there. A VERY large Brazilian festival was going on with block after block of stands in the streets selling food and drinks and sunglasses and purses and toys and, you name it, they were selling it. So we shopped in the streets a little bit too. Soooo many people! It was difficult to get into our hotel's front door!

I have more to tell...to be sure...but this is wearing me out all over again! I have to go to bed now. But I promise to continue with the adventures of Carol and KB tomorrow. My apologies, but I'm still worn out from this wonderfully busy trip. (even though I "only" put on 11,250 steps today)

to be continued...

Wednesday, August 31, 2005

Start Spreadin' the News

I'm leavin' today...(well, really tomorrow)! New York, New York!

I'm getting all excited now. Kristi (KB) and I fly out tomorrow evening for NYC! What an adventure this will be. And while I really wish that Brian was going to be there to experience all of this with me, and make me feel safe(r) on the streets of the Big Apple, I know that Kristi is my ideal travel partner for this trip and that we are going to have a BLAST!

In my younger days I loved to travel and wouldn't think twice about hopping in my car alone and heading out to places unknown. Post-Dominic I became a 'little' more cautious. The older I got, the more cautious still. Then came the Big C and I seem to have tossed a little bit of that caution to the wind again. I think that's a good thing. When my time comes, it will come. A couple of people have asked me if I'm nervous about being in New York because of terrorists and muggers and all of the bad things you hear about. I'm not worried in the least. I won't be stupid and walk down dark alleys or wave $20 bills in the air. But this is such a great opportunity. I intend to embrace the city to the best of my ability. I told KB that I will give it my all and try to keep up with her. It will be energy well spent!

Happy Trails to Me/Us!

Friday, August 19, 2005

Humbling

Wow! I can't believe it has taken me all week to sit down and finally enter this blog. Wow! I can't believe what an incredible couple of days I had last weekend. Wow! I can't believe the amazing family into which I was born, and the amazing family into which I married.

Last Saturday was the 3rd annual Rally For A Cure golf outing. I am pleased to announce it was a great success. And that is, in large part, due to my family and friends. The time and effort that go into this thing is immeasurable. The love and support I feel from attending cannot be put into words. This event is not about me. But it does raise money for the Susan G. Komen Breast Cancer Foundation, so I tend to personalize it a wee bit.

Going above and beyond the 'usual' wonderfulness of themselves, The Wychesit/Brusse family caught me totally off guard with their generosity. Baby Mary presented me with a heartwarming letter on Friday evening, accompanied by an envelope that contained money to sponsor a hole in my honor. I was blown away! What an unbelievable gift! I was speechless. And later, those tears I mentioned in a recent blog came to the surface. I had a great weekend, but that just put the icing on the cake.

Also, one of the silent auction items was a walking stick made by Amy's sister. It is one of the coolest pink ribbon items I have ever seen. It was made specifically for this year's Rally and came with a truly inspirational poem. I HAD to have it (sorry, Lisa) and so I kept raising the bid until it was mine. Then Julie even personalized it with my name. For now it is a work of art displayed at home. I intend to use it for the 4-mile walk at RoadAmerica in October. And one day, who knows, it may serve as my 'cane'.

As if that weren't all enough...on Monday I received some touching photos from my sister, Sue, of her children. On Friday night, and again Saturday morning, they participated in the Relay For Life. Walking, walking, walking. The pictures were of them decorating a luminary to place around the track that then burned all night long. They made me teary at my desk. And, the team they were a part of raised over $10,000 for the American Cancer Society! Fabulous! Again...a spectacular gift that couldn't be more appreciated.

I honestly am humbled by these experiences. The strength I draw from the love and support of family and friends is what sustains me, day in and day out. Money doesn't buy happiness? I don't know. All the money raised could one day be that most important dollar that is used to develop the cure! Imagine the HAPPINESS then!!

Thursday, August 11, 2005

I'm me again!

2 hours 45 minutes (and several coins) later...my hair is back to "normal."

It's now just a little lighter than my natural color, and that will become obvious when the roots start to show. But I PROMISED my hair wizard that I won't ever attempt to color it myself again. Maybe next time she can go half a shade darker to get closer without going over. My whole purpose in coloring was to get back to my natural color so I don't have to worry about the root situation any more! (and to disguise some of those greys)

One person told me the goth look made my eyes pop. I thought the look was making everyone else's eyes pop!!

It's good to be me!

Tuesday, August 09, 2005

I'll do my crying in the rain

Tears are an odd phenomenon, don't you think? For example...

Yesterday morning I woke to my radio, as I do every weekday. They gave me the time, the temp, and then said "for those of you just joining us this morning, we are mourning the death of Peter Jennings." I cried. I cried and I lost all ambition to get out of bed or move or do anything that I needed to do on a Monday morning. It just hit me like a ton of bricks. The man announces he has lung cancer in April, and by August he's dead?!? I have always been impressed by Peter Jennings. His voice, his knowledge, his delivery, his compassion. He did great things with his life. Not bad for a guy who never even graduated from high school. So I cried in the shower and I cried on my (late) drive to work, and I teared up once or twice at my desk. Not just because Peter Jennings died, but because he became another damn statistic. Another awful Cancer statistic. And those statistics hit a little too close to my home and heart.

Today was a whole new tear-fest. But...these were tears from laughing so hard! Laughing at myself that is.

I did a bad, bad thing. I wanted to get back to my original hair color (dark brown for those of you who don't remember). I bought a box of stuff, mixed it up, applied, waited only 25 of the recommended 30 minutes and...voila...it turned out black! I have black hair! I've been told it looks goth, ethnic, and like an old lady trying to cover her greys (ok, that part is partially true). It's funny! It's very, very funny! I got to work and we laughed most of the morning at my misfortune. Then at noon I got it cut into a bob and my hair wizard tried to lighten it up. We'll continue that process tomorrow afternoon. The craziest part of all is the way the color took to my hair. It's very calico. Some areas are dark brown like it showed on the box and some areas are black, but all around my face is black. No, I don't have any photos. I don't think they would do it justice.

I have high hopes for my hair wizard tomorrow. Otherwise, we could be looking at tears of horror!

Thursday, August 04, 2005

Hello? Is this thing on?

Sometimes, in later conversations, I find out that someone has read my blog. They make a reference on the phone or through an email. But, I'm curious as to how many folks are actually reading this thing. Should I just be sending out emails instead? Would that promote better 'conversation'?

I remember some people saying that it was difficult to figure out how to leave a comment. Is it that tricky? I haven't tried.

I guess what I'm asking for is some feedback. Leave a comment here. Let me know if I should continue on, or switch over to emails.

To those of you 1/2 dozen or so who let me know you're reading, or who leave the occasional comment, I thank you. It makes a difference!!

Tuesday, August 02, 2005

Disappointing

So I received a reply from a woman at LiveStrong. She gave me a link to a website that directs me to various clinical trials. That's all.

Maybe I was being a little unrealistic, but I thought maybe they had professionals on staff who would look at my specific situation as described in my message and say "by golly, this woman needs to go to Clinic X and see Dr. Z!"

I will go ahead and fill out the form on the web link and see if I qualify for any of the trials. In the past, I have not. Depending on what comes up I can then decide if I want to get involved. It's a little scary to be part of a 'trial' --- but I know that it's 100% necessary if there's ever going to be a cure found.

I want to see another doctor somewhere. Get a second 2nd opinion. (my first second opinion was last Sept in Madison) I'm just not sure how to figure out where to go...

As Brian and I said last night...we're in the exact same spot we were at this time last year. That can be seen as a good thing or a bad thing, depending on the perspective of the day. At the moment, it seems like a bad thing.

Monday, August 01, 2005

Hey! Watch where you're putting that thing!

Well, I survived my injection on Friday but it was...yes...a real pain in the ass!! However, the nurse was quite adept and the procedure itself was quite tolerable. I blame my poor performance on the golf course Friday evening on the new meds though. (Come on...I can do that!)

I was told to keep active so the meds would travel well through my system; hence the golf game Friday, and the new record on my pedometer on Saturday (beat the old Yachats record by about 500 steps).

Physically, I'm fairly stiff all over. Not sure if that's all meds, or from lots of weekend activity, or both. Mentally, I'm doing much better and am now just anxious to hear back from the fine folks at LiveStrong. Emotionally, I'm a whole heckuva lot better than I was. It must be this constant messing with my hormones that make me well up. (oh yeah, and because sometimes I'm reminded that I have cancer)

So now we're back on guard duty and will continue to keep a close eye on the numbers, particularly over these next 3 months or so. It sucks, but I'm just going to slip back into avoidance mode for a while. It seems to be an effective survival technique for me!

Welcome to August. Hard to believe July is over and done with. Weren't we just walking on the Oregon coast?!?

Friday, July 29, 2005

Up, Up and Away

As I suspected, my number was up again with this blood draw. I don't know why I suspected, but I did. Now it's at 77. S o today I'll go in and get the first shot in the rear. This is the Faslodex that will replace the little pill. It is anticipated that my numbers will rise for the next two to three months and then by November we should see the Faslodex working and bringing the numbers back down. Dr. Kumar says not to worry. He said I look good, and with the absence of any new symptoms things don't appear to be moving to other organs. Still...I'm a little freaked out by all of this.

I did send off an email the other day to the LiveStrong Organization. I'm hoping they can point me in the right direction to seek out a specialist or find a clinical trial in which I can become involved. Intuition says it's the thing to do now.

I hope all of you are LIVING STRONG!

Thursday, July 28, 2005

Tune In Tomorrow

After my appt yesterday we know........................nothing!

We talked with Dr Kumar and I suggested that maybe we should just do another blood draw for starters to be sure that last week's numbers weren't just a fluke. He agreed that was the best place to start. If the numbers are back in the low 50s then we'll just continue as we have been. If the numbers have stayed the same or risen, then we'll do my first injection on Friday.

"Everybody Limbo!"

Wednesday, July 27, 2005

Nervous Nelly

As the day progresses I find myself tapping my foot a little more and becoming increasingly more tense. I have an appointment scheduled with Dr. Kumar this afternoon. We're going to further discuss what this change in numbers might mean and what steps we need to take, aside from the change in meds. Brian is coming with me, much to my relief.

I know I should have a lot of questions, but I don't. Not really. My brain won't let me 'go there' or something. I'm hopeful that Brian has questions. Or better yet, I hope it's another situation where the Doc answers the questions before we even have to ask. He's good at that!

I already know that we may not do a scan now but "save" it for the future. The body can only take so many x-rays and scans and radiation sessions before it becomes a new problem of its own. So we have to scan wisely. I'd like to know though, of course. I'd like to know what looks different now, and in what way, from how it looked a year ago.

I don't have an impending feeling of doom. I do have an overwhelming sense of being in limbo.

More later...after the appt.

Monday, July 25, 2005

It's a Numbers Game

55...52...69...Hike!

No, it's not football, it's my tumor marker number. Again, last week, we thought things were on a downward trend, but then we got the latest results and there's been a spike in my number again. 52 to 69 may be a significant jump. One theory is that is has to do with my meds (Femara) and my body may have run its course with that drug. There tends to be a window of 6-12 months with most of this type of drug and then the effectiveness wears off.

So now I'm being switched to something new. The "problem" for me is that instead of having to take a little pill each day (something I have managed to work into my daily routine quite nicely, thank you very much) I will, instead, get a shot in the rear end once a month. Isn't that special!

Of course my first question to the nurse was "how confident can we be that this is entirely meds related, and do we need to be doing a scan of some sort again?", to which she replied that Dr. Kumar had not mentioned that, but she would certainly let him know that I mentioned it and they'll get back to me tomorrow.

Ironically, before I got the call, I was just looking up some info online today about metastatic breast cancer. I saw another number there: 20. (20% that is.) 20% of women with metastasized cancer live at least five years once diagnosed with the spread of the cancer.

20 is a nice round number.
I would like to be part of that 20!
I need to be part of that 20!
I WILL be part of that 20!

Tuesday, June 28, 2005

Glorious Day!

It is, indeed, a glorious day!! It's hot and humid and thick outside. I'm sitting at my desk where I don't want to be just now. People around me are grumpy.

BUT...I had a great night's sleep back in my own bed last night. Today is my Dad's birthday. And it was one year ago today that we received the official word that my cancer had returned/spread. Glorious?? You bet! Because here I am, going strong, and loving every day of my life!!

Our family weekend was, as Mary said, beyond description. It was so heart-warming to have all of the Breiters together (even with "flat Alex" representing the one missing nephew). I was exhausted by Sunday night...but it was a good exhaustion! And I'd do it all over again!!

Now we look forward to the coming weekend when Brian, Dominic and I make our way out west to Washington and Oregon. And we'll get to see a 3-dimensional Alex! I am soooo looking forward to this vacation. I haven't been in Seattle since I was pregnant with Dominic...almost 15 years ago! And then to spend some quality relaxation time with the Breiter/Pratts on the Oregon coast will be just what we need after the heat and humidity of WI in June. Awesome!

Let the glorious day continue --- and for all of you too!!

Tuesday, June 14, 2005

Mission: Accomplished

Well, I did it!

Last summer when I learned that my cancer had returned/spread I didn't know what that would mean for my future. I didn't have a clear understanding of my prognosis. So I made a very short-term goal of being here for Dominic's 8th grade graduation. And here I am!!

Next mission: to still be around four years from now to see him in his cap and gown and receiving his high school diploma. Poor Dominic...I got a little teary driving him to the graduation ceremony. He looked at me like I was out of my mind. I could just see him rolling his eyes at my sudden emotional breakdown. If I hadn't been on the verge of a major crying jag I'm sure I would have laughed then. I'm laughing now instead. Poor kid! Well, he's learning about the emotions of women. ha ha

What will my mission be following Dominic's high school years? Why, that would be our 10th wedding anniversary, of course!!

BRING IT ON!

Thursday, June 02, 2005

Liver (no onions)

I can't believe how long it's been since I posted anything here! I guess with everything going on with Mom and some other matters, I just never sat down and typed. But here I am today...and with good news too!

Last week we did my regular blood draw before my infusion. Kidney functions looked good so we proceeded with the Zometa. However, two of my liver function numbers were way out of whack. So we scheduled a re-draw for one week later. As each day passed I started to worry a little bit more. By Wednesday I was incredibly nervous. I went in at 8am for the blood draw. At 2:30 when I left work for the day I called the clinic to see if they had my results yet. The nurse said the numbers had come way down since last week but were still slightly elevated. I wasn't sure what to think of that. So I got another call this morning and she said that Dr. Kumar looked at the numbers and said that since they didn't stay raised (or go any higher) that this is not something that's cancer-related. Several things could have caused the numbers to be so high (including any alcohol I may have had to drink the night before). So today I am walking on sunshine because my liver is looking good!!

Mom is getting around better all the time and it sounds like the physical therapy is doing the trick. I am soooo looking forward to having the whole family together this month! It just seems like it's been too long!!

And as if my day couldn't get any better, now my wonderful friend Kristi (aka KB) and I are planning a trip to New York City!

I am blessed.

Sunday, April 10, 2005

Dates for your calendars

Here are some upcoming events that I would like to make everyone aware of...

Sunday, June 26, 2005: Picnic at our house! Mary, Scott and Aaron will be here from Oregon. We'll have a gathering to get all the Breiters together (and hopefully some Steckers too!) It will also be a belated graduation "party" for Dominic who will have completed eighth grade. Please let us know if you are able to make it!

Saturday, August 13, 2005: Rally For A Cure golf outing at Sunset Hills to raise money for the Susan G. Komen Breast Cancer Foundation. Always a fun time! Sign up sheets should be available soon out by Ed, or you can let us know in advance if you're interested.

Saturday, October 22, 2005: The American Cancer Society's Road America Walk/Run. (emphasis on WALK) The walk begins at noon. Always looking for new team members! If you're not interested in walking, fear not, I will most likely be hitting you up for a pledge. Here again, let me know if you would like to walk. This one is quite a ways off, but if it's on your calendar early it's easier to make the commitment. At least that's how it works for me.

Happy Sunny Sunday All!!

Saturday, April 09, 2005

There are no words

A sister of a sister-in-law died this week. I didn't know her, but I know several members of her family. I don't even know any of them that well. But they're very kind people. They always ask about my health. They hug me like they know me well.

I think the fact that Wendy was only 44 years old made it an even more difficult time to spend at the funeral home. She is survived by her husband and two teenage boys. I shook their hands, I offered my sympathies. I wanted to say something healing and profound, as everyone does when they go through those lines. I wanted to say the comforting kinds of words that I would want spoken to Brian and Dominic if it were me laying in that casket. Nothing came. There are no words. I guess the mere presence of all those many mourners in one room has to "speak" the sentiments that have no nouns or verbs or adjectives or adverbs. There are so many interjections that come to mind, but somehow we deem them inappropriate at 'a time like this'. But first and foremost, in this impromptu English lesson, there is that one question word that looms so large...WHY? WHY Wendy? WHY now? WHY their family? WHY this way, so unexpectedly?

Wendy is fine. She's more than fine. She is living a glorious new life. When we die it is those who must continue on through life on this earth that feel the human pain. The sorrow is not for Wendy. The sorrow is for her family and friends. But I do feel sorry for Wendy in a way. Because she isn't here for the day-to-day living. She won't be here for major milestones in her sons' lives. If tears are shed in heaven, they must be shed over things like that. Things like knowing your son's heart is breaking because you aren't here for the birth of your first grandchild, for example.

Yes, our spirits forever remain within hearing range of those we love the most. But the communication lines between heaven and earth are not always as clear as we would like them to be, in my opinion. I believe that intuition is God whispering in our ear (much like conscience is). But you can't always trust intuition. That's due to static on the line. I'm sure the static is on our end though, never on God's end.

Where am I going with all of this? I don't know. I went to a stranger's funeral and it made me cry. That's not so unusual. But it used to be that when I went to a funeral I would personalize the event as to how painful it would be to attend the funeral of someone in my immediate family (parents, siblings, etc.). These days I find myself personalizing it as to how my own funeral may be.

That's all for now.
"May perpetual light shine upon her."

Monday, March 28, 2005

Monday, Can't Trust That Day

I wrote a pretty long blog entry this morning, but when I went to publish it the page wouldn’t come up and I lost it. Not good since I was already having a bad (read: weepy) kind of day. I didn’t want to be here at work but my friend Kristi (KB) pulled me through. Those are the best friends…the ones who help you without knowing they’re doing so, and with no extra effort on their part, just by being themselves. So I’m starting over with the blog now. I’ll copy and paste and not risk losing it again. But I won’t be able to say everything I said before.

I wish there was some way to predict the bad days. Or at least to pinpoint what might trigger the emotions. Today it was as simple as singing a song --- an upbeat song even --- but it still made me cry. And cry. And cry. I was 5 minutes late for work. The song was “I am the Bread of Life.” Kind of Eastery, so maybe that’s why it popped into my head in the shower. “I will raise you up. I will raise you up on the last day.” But it made me think of funerals. I can’t explain it, it just happens. I don’t have a fear of death. But I become overwhelmingly sad when I think I may die before I retire. Imagine all the things I’ll miss out on with all of you if that happens! I think most about how I’ll miss out on Brian and Dominic’s lives. Too much!

But then as the morning went on and Kristi and I had some laughs I started to feel better. And I thought back on what a wonderful weekend it was. Playing in Madison on Friday with Dominic and Sue and her kids was great fun! And yesterday, Easter, was beautiful. The sun was shining. Brian, Dominic and I went to church together and then to Brian’s mom’s house. We were the first ones there, just waiting for the crowd to arrive. And arrive they did! I love the noise!! I love the laughter and the conversation and the pervading feeling of family love. And I got to laugh some more on the phone with mom and dad once we got home. It was a very good day.

So maybe that’s it. Maybe I just crashed today after my Easter high.

The sunshine and warmer temps did not go unappreciated today though. Always easier to get over the blahs with a friend to make you laugh, memories of a wonderful Sunday and the sun in your eyes.

Tuesday, March 22, 2005

Headline News

I think I managed to get this link sent to everyone, but I'm not sure. By putting it here too, though, there will be a "permanent" place to check it out.

I had NO idea they would put this on the front page (or that they would use such an odd shot), but I'm pleased with the article. There were so many other things I said, but I understand that space is limited.

Here I am: http://www.wisinfo.com/sheboyganpress/news/archive/local_20105578.shtml

Marvelous March

Here I am again. At long last I'm back at the computer to post some "life" updates.

First of all, I must apologize to anyone who may have checked in looking for information on my last blood draw and the tumor marker results. I am pleased to report, however, that the number was actually down slightly. It's still up in the 50s (with below 30 being "normal" range) but at least it's not back up in the 80s!

Secondly, I must tell you that Brian and I had a fabulous time in Mexico!! It was beautiful and relaxing and we very easily grew accustomed to "Mexico time" which means not watching a clock or being in a rush for anything. The sky was blue, the beaches were white, and the drinks were cold. We loved every minute of our time together.

We had a portrait done while down there. It turned out quite beautifully, if I do say so myself. I must admit that it was the one and only time while we were down there that I really gave any serious amount of thought to my cancer. One of the many people who stopped to comment, while we were doing our sitting right there in the lobby, said that it would be something wonderful for our grandchildren and great grandchildren to have. But my thought was that I hoped it would be something that Brian would be happy to have if my cancer should take me away from him. I was almost teary thanking the artist's wife because I truly appreciated them making this opportunity available to us. (now we just have to get it framed and hung)

Dominic got over his pneumonia and moved right on to wrestling. He's doing exceptionally well for his first year and has pinned a number of his competitors. I'm handling watching him much more easily than I would have guessed. But I haven't seen him in too many awful holds yet either.

Last weekend we stayed in an enormous condo at The Wilderness in the Dells with Sue, Kathy and their families. We had a lot of fun. I just love being around all those kids and listening to them talk and play and getting hugs from them. And Owen's smile is so incredibly contagious. This has become an annual event for us. I'm not "allowed" to go down the big tube slides anymore, but the wave pool and lazy river were great, as was the indoor/outdoor hot tub. I still managed to get plenty pruney myself!

This week brought the first day of spring and Sunday is Easter. New life!! I'm ready to shake off the cold of winter and embrace the warmth of spring. I didn't have a single hotflash or headache while in Mexico. I think that's a sign that I'm not a winter kind of gal.

Bring on the sunshine! Easter blessings to all of you, my beautiful family and friends!!

Friday, March 04, 2005

"Lucky" number

I called this morning and got the results of my blood test and my tumor marker has actually dropped a couple of numbers, so that's a good thing! It's still a little higher than we would like, but it's not totally out of control. That put us in fine spirits for heading out of the country! (not that we needed any help with that)

A photographer came by the office today to take my picture for the article in the Press. I was nervous, but he was great and I think it went ok. Now I'm nervous about the final photo selection. I don't have any say in that.

I don't think there was anything else I wanted to cover today. We'll try to bring back some warm temperatures and sunshine next weekend.

Viva la Mexico!!

Tuesday, March 01, 2005

Press-ing news

Sheboygan Press, that is. There was an article in the paper last week looking for people to respond for the newspaper's "annual report." The theme was "Firsts" and there was a long list of subheadings. One of those was First Chemotherapy. Something in me clicked and I decided to respond. I sent off an email that told of my first day of chemo and how Brian and I got through it. The woman who replied told me it was eloquently written. And so we got together today and she interviewed me over lunch. The article will appear in the Sheboygan Press either March 20th or 27th. I didn't feel I did a very good job saying what I wanted to say, but she was wonderful, and I'm now curious to see what she writes. It sounded like she was interviewing only three of us to include in the chemo portion. For those of you who don't get the paper, I'll hopefully be able to send you a link if/when it's online. I don't know if what I wrote will be included or not, but I'll share that with all of you as well.

Dominic is feeling well and back in school this week and has his first wrestling meet this Thursday. Yikes! I'll try to be strong.

Brian and I are getting excited about our trip to the Riviera Maya in Mexico (just south of Cancun). We leave this weekend and so the work week is dragging unbearably.

Tomorrow is another infusion of the bone strengthener. We're also going to re-test my blood and see where my tumor marker number is at. I don't know if I'll have those results before we leave the country or not. Part of me thinks I'd rather wait until our return, but part of me wants to know right away. If I learn anything on Friday I'll be sure to fill you in!

Tuesday, February 22, 2005

Lymph Nodes

Funny how the term 'lymph nodes' can cause such fear in me now. Dominic has been hacking away with a cough for about two weeks now. I had to take him in to the doctor to try and get rid of this. I was fine the whole time we were there...almost. Even when the doctor said he has pneumonia I didn't freak out or become overly concerned. In fact, I think I kind of expected it. BUT---when he showed us the x-ray and where there were some lymph nodes that looked funky, my heart skipped a beat. I know lymph nodes can become inflamed when a person is sick. I know what their general purpose is. But they will always scare me. How many years ago did I first learn what a lymph node even was? Jerry? Are we looking at 20 years now since you had your cancer? To me there will forever be the link between lymph nodes and cancer. My lymph nodes were clean when I had my lumpectomy, but still my cancer came back. So....were they really clean?? or are these cancer cells so tricky that they can hide or disguise themselves?

Anyway, Dominic is resting comfortably and for that I am overwhelmingly grateful. I have always said that the thing I am most thankful for is that it is me who has the cancer and not Dominic. It's too hard to watch your children be ill. Sorry mom and dad...if I could spare you the heartache of my disease I certainly would!!

I didn't realize how stressed the events of this day made me until I sat down here to write about it. My boy is sick. Please say a little prayer for him so he gets over this thing quickly...and so his lymph nodes get back to normal.

And say a little prayer for Brian too. Today is his birthday!!

Friday, February 18, 2005

Here I am!

Hmmm...looks like I may have actually got this thing going. I'll be playing around with it a little first to get things the way I want them so it's easy for both you and me to read and use. Then it's just a matter of getting myself in the habit of posting. I like the idea of having a place for all of us to "connect." I hope this works!