Number, please

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

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

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

What will be?

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

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

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

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

Never Gamble on my Blood

No one was more shocked than I when Brenda came out to the front waiting room at the clinic yesterday and did the "happy platelet dance!" For no apparent reason, my platelets were up and we did a round of Taxol yesterday. It's just too bizarre. I was totally unprepared.

Today I've been feeling very up and down. Feeling like I'm heading in a mostly 'down' direction at the moment, though, and I'm off to bed. We shall see what tomorrow may bring. I'm continuing with daily injections for the platelets in order to keep them where they need to be.

Impractical

I guess I failed to make it clear on here last week that I did proceed with a Taxol treatment last Friday, prior to the blood transfusion on Saturday. For some reason, folks around the clinic seemed to think I could have more Taxol today. I went in feeling that was not very realistic, given my history of whacky blood. Sure enough, we were able to get the Avastin going, but not the Taxol. My platelets were too low---AGAIN!

Not sure why anyone was surprised or disappointed. I think they think that the lower dose was the answer, but I knew better. No surprises for me. It went the way I thought it would. And we'll try again next week.

My now 16-year-old son drove me to today's appointment and hung out with me, since he had no school today. He's been to the clinic before, but not since I've had the port in place. He watched the entire access process and I'm sure was fascinated.

Feeling queasy tonight, but it's too early to take any more anti-nausea meds just yet. Bed time won't come soon enough!

Telling Time

Sue, just to let you know, in case you were looking for any part of our shared brain on Thursday, according to the MRI, I had the whole thing! And the good news is that it showed up clean for cancer!! Can I get another "Whoopee Doopee!"?!

The "eyes" have it and I am leaving in a few minutes for, you guessed it, another blood transfusion. So that's where I'll be spending my Saturday again. I sure hope they give me a room with a view this time. I always end up looking out at a brick wall.

There's always something unusual that comes up during these appointments of mine, yes? Have you noticed this as well? This time around it came when I asked about how many more rounds of chemo we would be doing and Dr K said "don't think we're ending any time soon. We could easily be looking at another six months." We need to not only get that tumor marker down, but we need to maintain the number once it is down, and the way to do that is with continuing treatment. Both Brian and I were slightly taken aback, and yet it makes perfect sense. We have reduced the dosage again though, so maybe it will be more tolerable and we'll get more treatments in on a timely basis.

It wasn't until I was crawling into bed Thurs night and looked at my bedside clock that also gives the date that I realized it was the 6-year anniversary of my original breast cancer diagnosis. Wow! Keep those years a rolling by!

Yesterday was Dr K's birthday, but I didn't know until I got there and was all hooked up. May have to do something belated for this great doctor of mine. Just need to come up with a clever/original idea. Anyone?

Better run. I've got a date with a reverse vampire.

What will the day bring?

All this week I have gone in for Neumega shots to try and boost my platelets. Yesterday I mentioned that I had been feeling light-headed. Dr K came out and spoke with us briefly and decided we would do a brain MRI...so we did, yesterday afternoon already. I should have results today. Dr K doesn't really expect to see anything (cancer-wise, that is...hah, hah, he's a funny guy when he wants to be). This is more precautionary and will give us a new baseline, since we haven't done a scan in about a year.

Today will also be a blood draw to see where my numbers are at and find out if we can proceed with a treatment. My hunch is that I could possibly be looking at another transfusion because it seems like my vision is 'goofy' again.

Time will tell...and then I'll tell all of you what time had to say...

Whoopee Doopee

We've learned over time to take the good with the bad. I am most pleased to be able to report the very good news that my tumor marker has dropped substantially again and I am now at 511! My heart definitely skipped a beat when they gave me the news today. At this rate I'll be back in a "safe" range before we know it!

The bad news is that my blood numbers dropped just since Wednesday so we couldn't do the Taxol again today. I did receive the Avastin, however. Both my platelets and my hemoglobin dropped. I opted to hold off on a transfusion until I really feel like I need it. I received the Aranesp today to boost those red blood cells so we'll see how that works for me. Neumega shots will start up daily on Monday for the platelets. Mine is just such an odd case all the way around. But they think the radiation beat up my bone marrow pretty badly and that's why the numbers just don't cooperate the way we'd like them to.

I shouldn't even say this, for fear of jinxing myself, but I have high hopes of getting my butt back in my chair at work by February. That's my new prayer request. It will truly be a sign that we have things fairly well under control.

Have a great weekend!

Here We Go Again

I saw Dr K yesterday and, while my numbers are all pretty borderline, we are going to proceed with treatment tomorrow anyway. Dr K feels it's important to stay on track as much as possible. That is why he thinks we should also resume the daily Neumega shots next week. Unfortunately, it's the only drug that's really out there to boost the platelets. We'll just monitor all of the side effects very closely.

I hope to have an updated tumor marker number tomorrow. That way, if I feel especially crummy after treatment, I can at least focus on that positive drop in number. We want to continue to see things moving in the right direction!

I also received the results of my stomach biopsies and everything was clean. Whew! I have a mammogram scheduled for the end of January, but we're so far past those concerns that it's not a big deal at all any more.

My crazy husband is out golfing today! Yes, the weather is unseasonably warm, but it's not THAT warm!! To each his own, I suppose. He'll probably come home with wind burn.

Happy New Year! Now going to move to a more comfortable chair. If you don't hear from me for a while, you can probably assume that the chemo and Avastin knocked me out for a bit.

Piece of Cake

The scope that I had done yesterday was well-tolerated. I think that's mainly because I was soooo completely out of it! They must have given me the good stuff because I have no recollection of anything and slept a good long time afterwards. Then I came home and slept 4 more hours. Poor Brian...he says I kept asking him the same questions over and over last night.

Dr Sokhi "stretched" a portion of my esophagus where there was some narrowing. He also removed a polyp in my stomach (not unusual) and then took two biopsies. I'll have those results in about a week. He diagnosed me with Gastritis and also said there are some varices that we'll need to keep an eye on. Hmmm...I wonder how we do that? I was still zonked out when he explained all of this to Brian, but he and his nurse wrote some things down and also provided a diagram of the areas we're talking about. I'll have to contact him with my follow up questions now that I'm no longer feeling comatose.

I actually feel pretty good today. There's not an appointment to be had until next Wednesday and that almost feels wrong...like I'm forgetting something.

I want all of you to know that you shouldn't feel badly or left out or rejected or sad that you didn't receive a Christmas card from us this year. We just didn't get around to sending them. Who knows...maybe we'll wish you well when January rolls around. But it just became a weight on my shoulders that I couldn't handle feeling the way that I did. Brian really wanted them out, for obvious reasons, but I told him that all of you would understand and that it wasn't critical. So we apologize for not being in touch, but believe me when I say we truly value all of you and wish you happiness not only during these holidays, but throughout the coming year. Holy cow...2007 is just around the corner! Let's hope it's a heckuva good year for all of us!!

Time for some lunch now. I actually feel hungry!

Awesome Gift

The most creative, unexpected, thoughtful gift came to me from a group of employees where I work (and some of their family members as well). The two Kristis got together and formulated a plan to participate in a local blood drive in my honor. They spread the word at work and 16 people participated! I am just in awe at what a fantastic thing this is! I understand that many others let it be known that they could not donate for a variety of reasons and that is so completely understood. Heck, not even I can donate blood. This truly is a gift of life for many, many people. And to have given of yourselves in my honor is quite touching. I thank you from the bottom of my heart.

In addition to the blood drive, KB had little cards available for folks to decorate and send me Christmas wishes. They were so cute and festive. I loved every one. I think you can all understand why I miss going to work and seeing all of these wonderful people every day!


While my platelets are still low, it appears we are going to proceed with tomorrow's GI scope anyway. To be honest, I was kind of hoping to get out of it, but I guess it's important that it be done. I've had no episodes the last day or two (of course) but that doesn't mean the problem is solved. Not sure how quickly I'll have results but I would think it could possibly be a case of immediate feedback.

I had my follow-up with the ENT doctor today and he was actually able to cauterize two blood vessels in my nose. That was an "odd" sensation, to say the least. Hopefully it will offer some further relief. The further away we get from the last Avastin treatment, the less intense the nosebleeds seem to be. So we know it's all related. Now we just try to keep things as controlled as possible.

Christmas was quite nice and it was a full day. It's always such a treat to be at Brian's mom's house with all the many kids and grownups. Yes, a bit overwhelming...but always fun, always happy, always an amazing sense of family.

Time to get cozy and settle in for the evening. I'll let you know how the scope thing goes. May be a little hazy from the sedation tomorrow though, so don't hold your breath.

Merry Christmas to All!

Here's hoping this Christmas Eve finds all of you with family and friends enjoying the love of the holiday spirit. Our day has been fairly uneventful, but I did manage to get the gifts wrapped. Who knew even that could be such an undertaking?!

There was no treatment to be had on Friday because my platelets are still too low. I'll have labs on Tuesday to determine whether or not we can proceed with Wednesday's procedure (the scope). Dominic will be hopping the train on Tuesday also as we send him ahead to MN. He's quite excited about that. He likes the "train people"---both those who ride and those who work on there.

I hope everyone is feeling merry and bright! God bless us everyone!!

Ups & Downs

Where to begin...? I haven't been on here in a few days again so I have to stop and think what has all occurred.

Back to my birthday I guess.
Immediately upon entering the clinic the women at the front desk were wishing me a happy day. Then, as I'm walking back to the chemo room, Liz is on the loudspeaker announcing it's my birthday and singing "Happy Birthday" in her Marilyn Monroe voice. Every one of the nurses is there to wish me well. My chemo chair already has balloons and a stuffed teddy bear from my friend Deb sitting on it. After seeing Dr K I came back to my chemo chair and here sits my friend, Fay! She came bearing balloons and my b-day presents from Brian. (I came to find out later that she was a fill-in for Santa who was supposed to bring my presents but couldn't make it early enough in the day.) Debbie and Lizzie also came to visit me with a purple poinsetta and a gift bag of treats! The nurses gave me a cupcake with a candle in it and handed out cupcakes to all the other patients and visitors as well. After all that excitement I did manage to get a short nap in. Then KB arrived to haul me and my piles of goodies away. She swung by the hospital with me for a blood draw and then carted me home.

That night was Brian's work party which I managed to attend for a while, thanks to the benefits of the steroids. I caught a ride home early with another couple that was leaving and as we rounded one corner in my neighborhood I spotted a cut out wooden donkey attached to a stop sign. I immediately knew something was up!! You see, when we were in Mexico last March, Brian and Ed rode donkeys up into the hills on one of the exursions they went on. Donkeys have been a running joke between us ever since. Sure enough, we pull in the drive way and here is an elaborate set-up of "The Ski Donkey Express" with a sleigh full of Santa and his chihuahua and empty beer cases and cans, being pulled by six more of these cut out donkeys. (Over the course of the next day or two Brian found four more donkeys hidden around the yard.) So that was the kicker for my birthday. I wanted to call Brian and tell him to come home right away! This one is going to be hard to top!!

Saturday was an all-day affair with my blood transfusion, but I did manage to stop in at my company's holiday party too, just long enough to say hello. I know I missed some folks, and I felt badly, but that was a long time on my feet and I was wiped out. But still, we did manage to then enjoy dinner out with a group of 4 other couples. It was a mellow evening but oh so worth it to be together with everyone. More hearty laughter to wear me out further. On Sunday I slept until 4pm! I knew the chemo and activity would catch up with me eventually.

On Monday we received the VERY good news that my tumor marker dropped another 500 points!! That was totally unexpected and was received like a belated birthday gift. If only the way I feel could reflect that number. Having peaked at one point at 5000 (we weren't even aware it had gone that high) I am now hovering at around 1000. This is great progress!!

My latest "issue" is a problem with swallowing and having my breath catch. It's like something is constricting in my chest and now allowing things to function properly. So I saw Dr Sokhi yesterday right away and he's going to send a scope down my throat next Wed. Today, however, we did a chest CT to see if that showed an obvious problem. What we found was not at all what we were looking for. It turns out I have fluid built up around my lungs. This can be a side effect of the daily shots I've been receivng for my platelets. So while this is not good news, it is very good that we found it so early and, once again, purely by chance. Obviously there will be no more of that injection for me and they have me on a prescription for fluid reduction anyway so we've just increased the dosage. Is the fluid around the lungs related to the 'catch' in my breathing/swallowing? We don't know that yet. We'll see what the scope shows next week and see if there's any improvement with stopping the injections.

Sadly, I'm going to miss the Viking/Packers game tonight. It's just too much for me to take on today. Brian is going with his brother instead. I know they'll have a good time, but I don't know that I can count on Dale to cheer for the Vikings for me!

Time to go push some more fluids and pop some more pills. I have no idea what tomorrow will bring at the clinic...labs, yes. Treatment? Hard to say. Eventually I'll get back on here and let you know how it's all going.

MY Day

What a very happy birthday it ended up being today! Seriously!! Even with spending several hours at the clinic for a treatment I had quite a wonderful birthday. THANK YOU to ALL who contributed to the fun of it!! I'll go in to more detail at a more reasonable hour of the day. The steroids are wearing off though and I'm more than ready to have my head hit the pillow now.

Just wanted to update you on the fact that I did have chemo today...and I'll be having a transfusion at the hospital tomorrow. Then shots again all of next week for the platelets. We're going to spread the chemo out from here on to give my blood more time to "buck up" in between. I'll still have the Avastin before XMas, but I'm now done with chemo until after the new year.

Sleep well. I really, really will try to get back to this blogging during the weekend to catch you up on some things. Happy B-day to me!!

Dreary

That word describes both the weather and my mood. I had chemo last Friday and have been feeling lousy ever since.

I saw the Ear, Nose & Throat doctor today and he has pretty much confirmed that my nose bleeds are a result of the chemo. He gave me some treatment options to try at home that will hopefully give me at least a little relief. From there it was to the VLCC to get a blood draw. Counts are good enough that I don't have to have any shots this week. That's a plus.. The side effects from treating the side effects are really getting to me. If numbers stay on track then I'll have chemo again this Friday.

I'll go into more detail when I'm feeling better, but the homemade gifts I received from people last week are what really help pull me through these tough days. Pete wrote me a song of my very own; Joan made me a cushy, comfy blanket; and Mac (via KB) made me two really great hats! Visits with co-workers also have given me a little "oomph." Trying to get into the holiday mood. Tougher when I feel so rotten physically.

I'll get back to you again later this week...

Nope...not today yet

Those darn platelets are still not cooperating so we couldn't do a chemo treatment again today. We did do the Zometa (bone strengthener) and the Aranesp (red blood cell booster). I'll have shots of the Neumega every day this week to try and get the platelets back to where they belong. Friday we'll run the labs again and hopefully be able to continue with the chemo (Taxol) and the Avastin. Now that we know these drugs are proving to be effective, I really want to get back on track and continue with the treatments.

Thank you for all of the excitement generated by my last blog entry! Your comments here, and phone calls, and emails are all great boosters for me.

Still trying to get some Christmas decorations up, but day by day it's happening bit by bit. Our tree is HUGE and fragrant. All credit goes to Brian for that, but thanks to Felix, too, who happened to show up at the exact right time to help haul it into the house!

Have a great week everyone.

JOY to the WORLD!

Dr K had the nurse call me specifically this afternoon to tell me the good news. My tumor marker has dropped almost 2000 points!!

We must be doing something right--when we're able to do it, that is. Now we just need to get my blood to cooperate so we can continue with these treatments and get that number down...down...down!

Have a FANTASTIC weekend, one and all. I'm going to gaze upon the beautiful snow that fell today and get some holiday cheer going with decorations around the house. The steps are a killer, but I have my elf boys to help with all the boxes.

Further Rejection

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

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

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

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

Going...Going...

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

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

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

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

Now back to my comfy recliner and warm afghan.

Rejected

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

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

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

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

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

My Monday Routine

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

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

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

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

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

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

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