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!
Thursday, December 28, 2006
Tuesday, December 26, 2006
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.
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.
Sunday, December 24, 2006
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!!
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!!
Thursday, December 21, 2006
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.
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.
Saturday, December 16, 2006
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!!
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!!
Tuesday, December 12, 2006
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...
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...
Monday, December 04, 2006
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.
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.
Friday, December 01, 2006
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.
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.
Thursday, November 30, 2006
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.
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.
Wednesday, November 29, 2006
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.
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.
Monday, November 20, 2006
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!
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!
Monday, November 13, 2006
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!!
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!!
Thursday, November 09, 2006
I feel icky, oh so icky
Just thought I'd update you on what these new drugs are doing for me...I think the title says it all. It has been a long, difficult, emotional week for me. The new chemo drip is even more harsh on my body than the chemo pills were. That was to be expected though.
Can't begin to tell you how much I need and appreciate the support and good thoughts from all of you. It makes each moment that much more tolerable. What an amazing group of people I have surrounding me!
Can't begin to tell you how much I need and appreciate the support and good thoughts from all of you. It makes each moment that much more tolerable. What an amazing group of people I have surrounding me!
Monday, November 06, 2006
Please Disregard My Last Blog
Here's the way things really happened...
I had a miserable weekend of pain/discomfort, nausea, and nasty bloody noses. The plans for a group of eight of us to try and dine out on Sunday night fell through because I was in bed all day. Remind me to never, ever try and predict upcoming good days again. It always seems to fail, for one reason or another.
To make matters worse, still feeling crummy today I went in for my rescheduled appointment. Platelets had increased only barely enough to make treatment possible. BUT, it turns out that a drop of 103 points is a very small number after all when we look at how many courses of the chemo pills I've had, so we started the Taxol today. It's a fairly low dosage, but in two to three weeks my hair will at least start thinning, and will most likely eventually all fall out now. (Just in time for winter. brrrr!) I will remain on the Taxol for an indefinite period of time. It all depends on how well it does or does not work for me. I will get receive the Taxol once a week, most likely on Mondays.
I really feel cheated! I commited the cardinal sin of hoping for the best, but not preparing for the worst. My optimism got the best of me and I felt really let down that I didn't get my "human" days.
Why am I still mobile and functioning at 9:45pm? Because they gave me steroids with the treatment so my brain is fairly wide awake I guess. That, and when I got home I napped from 6:30 to 7:30 since the blood pressure cuff woke me up every time I would start to snooze at the clinic today. HUGE thanks to Gordy and Romaine for getting me and my truck back home!
That's all for now.
May you all have sweet dreams tonight.
And remember to VOTE tomorrow!!
I had a miserable weekend of pain/discomfort, nausea, and nasty bloody noses. The plans for a group of eight of us to try and dine out on Sunday night fell through because I was in bed all day. Remind me to never, ever try and predict upcoming good days again. It always seems to fail, for one reason or another.
To make matters worse, still feeling crummy today I went in for my rescheduled appointment. Platelets had increased only barely enough to make treatment possible. BUT, it turns out that a drop of 103 points is a very small number after all when we look at how many courses of the chemo pills I've had, so we started the Taxol today. It's a fairly low dosage, but in two to three weeks my hair will at least start thinning, and will most likely eventually all fall out now. (Just in time for winter. brrrr!) I will remain on the Taxol for an indefinite period of time. It all depends on how well it does or does not work for me. I will get receive the Taxol once a week, most likely on Mondays.
I really feel cheated! I commited the cardinal sin of hoping for the best, but not preparing for the worst. My optimism got the best of me and I felt really let down that I didn't get my "human" days.
Why am I still mobile and functioning at 9:45pm? Because they gave me steroids with the treatment so my brain is fairly wide awake I guess. That, and when I got home I napped from 6:30 to 7:30 since the blood pressure cuff woke me up every time I would start to snooze at the clinic today. HUGE thanks to Gordy and Romaine for getting me and my truck back home!
That's all for now.
May you all have sweet dreams tonight.
And remember to VOTE tomorrow!!
Friday, November 03, 2006
Crazy Daisy
After receiving two units of blood on Tuesday I definitely felt like my head was reattached to my body. It was a huge help that way, as well as giving me a little boost of energy and helping my vision. The latest blood draw shows my hemoglobin is up to 11. Still lower than the minimum of 13 we would like to see, but much better than the 8.4 I was at.
On Thursday we drew labs for my treatment, and to find out where my tumor marker is at. Red and white blood cells were ok, but now my platelets are low, so I couldn't receive treatment today as scheduled. I'm on hold until Monday now and we'll see what the numbers are then. That was totally unexpected! I also have my follow up visit with the oral surgeon on Monday.
Since I didn't have treatment today, I won't start my chemo pills until at least Monday either...if I start them at all. We may or may not switch to the Taxotere chemo drip on Monday. That seems slightly less likely now that we have my latest tumor marker number. Get this.......it dropped 103 points!! My assumption is that we will go at least one more round doing what we're doing and hope to see a downward trend. My new number is 3765.
This should be a good weekend for me. With only the anti-nausea pills and the Fentanyl from the pain patch in my system, I could almost be feeling like a human being.
So while we've had a minor set-back with the platelets and not being able to stay on the treatment schedule, the tumor marker is down a bit (funny how a number like 100 is now "a bit") and we can all be thankful for that.
Enjoy this sunny, albeit CHILLY afternoon!
On Thursday we drew labs for my treatment, and to find out where my tumor marker is at. Red and white blood cells were ok, but now my platelets are low, so I couldn't receive treatment today as scheduled. I'm on hold until Monday now and we'll see what the numbers are then. That was totally unexpected! I also have my follow up visit with the oral surgeon on Monday.
Since I didn't have treatment today, I won't start my chemo pills until at least Monday either...if I start them at all. We may or may not switch to the Taxotere chemo drip on Monday. That seems slightly less likely now that we have my latest tumor marker number. Get this.......it dropped 103 points!! My assumption is that we will go at least one more round doing what we're doing and hope to see a downward trend. My new number is 3765.
This should be a good weekend for me. With only the anti-nausea pills and the Fentanyl from the pain patch in my system, I could almost be feeling like a human being.
So while we've had a minor set-back with the platelets and not being able to stay on the treatment schedule, the tumor marker is down a bit (funny how a number like 100 is now "a bit") and we can all be thankful for that.
Enjoy this sunny, albeit CHILLY afternoon!
Monday, October 30, 2006
Changes in Scenery
Keeping this brief cuz I don't feel so hot.
Last Thursday my wonderful sister, Kathy, drove up from Milwaukee with her two boys and picked up Dominic and me and drove us all to my wonderful sister Sue's house in DeForest. I was a terrible traveling companion and a lousy guest. But the kids all had fun and I had a new view as a lump on Sue's couch instead of on my own. Dominic and I stayed overnight cuz the drive back would have been too much for one day. But when I woke up Friday morning I was wishing I was home cuz I felt so rough. Again I was a terrible traveling companion, and once we reached my house I fell asleep in the chair for two hours---with my coat still on.
Today I was out of the house again to see an oral surgeon about these mouth problems. A potential problem is osteonecrosis as a result of various meds; most specifically the Zometa I've been taking for two years now. The upside is that there is not a big gaping hole in my jaw bone. I have some mouth rinse to try for a week to hopefully get these blood clots under control. Then we (Brian and I) went to the clinic to get my blood drawn cuz I've been so light headed and woozy and weak and out of it. Sure enough, I'm very anemic again. So from the clinic we went to the hospital to get my blood typed and crossed for a blood transfusion tomorrow (Happy Halloween). I'll be there at 10am and it will take 6 to 8 hours for the transfusion. If you're in the neighborhood stop by! I guess that's another change of scenery for me tomorrow...the view from my hospital room.
Definitely time to go get horizontal on my couch again...and try not to sleep through my Vikings game.
Last Thursday my wonderful sister, Kathy, drove up from Milwaukee with her two boys and picked up Dominic and me and drove us all to my wonderful sister Sue's house in DeForest. I was a terrible traveling companion and a lousy guest. But the kids all had fun and I had a new view as a lump on Sue's couch instead of on my own. Dominic and I stayed overnight cuz the drive back would have been too much for one day. But when I woke up Friday morning I was wishing I was home cuz I felt so rough. Again I was a terrible traveling companion, and once we reached my house I fell asleep in the chair for two hours---with my coat still on.
Today I was out of the house again to see an oral surgeon about these mouth problems. A potential problem is osteonecrosis as a result of various meds; most specifically the Zometa I've been taking for two years now. The upside is that there is not a big gaping hole in my jaw bone. I have some mouth rinse to try for a week to hopefully get these blood clots under control. Then we (Brian and I) went to the clinic to get my blood drawn cuz I've been so light headed and woozy and weak and out of it. Sure enough, I'm very anemic again. So from the clinic we went to the hospital to get my blood typed and crossed for a blood transfusion tomorrow (Happy Halloween). I'll be there at 10am and it will take 6 to 8 hours for the transfusion. If you're in the neighborhood stop by! I guess that's another change of scenery for me tomorrow...the view from my hospital room.
Definitely time to go get horizontal on my couch again...and try not to sleep through my Vikings game.
Saturday, October 21, 2006
Happy Sweetest Day!
Since I can't send a Hallmark card to each one of you, I thought I would blog my good wishes to you instead. I think it's very sweet that all of you check in here from time to time to see how I am. And on a gloomy Saturday in October, it's especially nice to remember all the many sweet people who touch our lives.
Yesterday I had labs, saw Dr Kumar, and had a treatment. The labs came back showing my red blood cells have taken another dip. I may end up going in for a blood transfusion early in the week. We did not check the tumor marker number, but will do so in two weeks. That's the number we WANT to see drop! White blood cells look fine which is always good.
When I saw Dr Kumar we talked about a number of different things I've been experiencing, the strangest of which are the blood clots in my mouth. Three times I have had it happen where I taste blood and then discover a clot. Yes, it's as gross as it sounds. They are about the size of half a peanut. It is most likely caused by one of the meds and I am now taking one Bayer tablet each morning to prevent clotting. Brian said he is going to have to build me a bigger shelf for all of my medicine bottles. We also talked about this pain in my right thigh/femur. For now we're going to monitor it and see if it becomes more of a constant thing, but it could be a side effect of some of the radiation I had to my back. If it gets worse or is problematic on a daily basis then we may do an x-ray or scan. I sometimes walk with a limp because of it though.
The treatment itself went well enough. The nurses were friendly and wonderful as always. No surprises or changes, except I got the Zometa this week also. I haven't had that for six weeks now, whereas it used to be every four weeks. Chemo pills start up again tomorrow (she says dreadfully).
Last night we had a visitation at the funeral home in Oostburg. Afterwards Brian and I came home and had a conversation about our own funerals/burials. It was not a conversation either one of us has wanted to have, but the evening just lended itself to finally sitting down and discussing some things. It certainly isn't anything anyone wants to talk about or think about, but it was important. And it seemed to lift another weight from my shoulders. Next step is to actually follow through with making some of the plans. Like I keep saying...you take care of all of these uncomfortable things, and then you just file them away for safe keeping until they're needed---no matter how far down the road that may be.
Hug all your sweeties today that you can!
Yesterday I had labs, saw Dr Kumar, and had a treatment. The labs came back showing my red blood cells have taken another dip. I may end up going in for a blood transfusion early in the week. We did not check the tumor marker number, but will do so in two weeks. That's the number we WANT to see drop! White blood cells look fine which is always good.
When I saw Dr Kumar we talked about a number of different things I've been experiencing, the strangest of which are the blood clots in my mouth. Three times I have had it happen where I taste blood and then discover a clot. Yes, it's as gross as it sounds. They are about the size of half a peanut. It is most likely caused by one of the meds and I am now taking one Bayer tablet each morning to prevent clotting. Brian said he is going to have to build me a bigger shelf for all of my medicine bottles. We also talked about this pain in my right thigh/femur. For now we're going to monitor it and see if it becomes more of a constant thing, but it could be a side effect of some of the radiation I had to my back. If it gets worse or is problematic on a daily basis then we may do an x-ray or scan. I sometimes walk with a limp because of it though.
The treatment itself went well enough. The nurses were friendly and wonderful as always. No surprises or changes, except I got the Zometa this week also. I haven't had that for six weeks now, whereas it used to be every four weeks. Chemo pills start up again tomorrow (she says dreadfully).
Last night we had a visitation at the funeral home in Oostburg. Afterwards Brian and I came home and had a conversation about our own funerals/burials. It was not a conversation either one of us has wanted to have, but the evening just lended itself to finally sitting down and discussing some things. It certainly isn't anything anyone wants to talk about or think about, but it was important. And it seemed to lift another weight from my shoulders. Next step is to actually follow through with making some of the plans. Like I keep saying...you take care of all of these uncomfortable things, and then you just file them away for safe keeping until they're needed---no matter how far down the road that may be.
Hug all your sweeties today that you can!
Thursday, October 19, 2006
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!
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!
Saturday, October 14, 2006
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!
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!
Monday, October 09, 2006
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.
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.
Wednesday, October 04, 2006
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...
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...
Wednesday, September 27, 2006
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...
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...
Tuesday, September 26, 2006
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!!
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!!
Thursday, September 21, 2006
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!
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!
Tuesday, September 19, 2006
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!!
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!!
Thursday, September 14, 2006
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?!?
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?!?
Tuesday, September 12, 2006
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!!
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!!
Sunday, September 10, 2006
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...
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...
Friday, September 08, 2006
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!
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!
Wednesday, August 30, 2006
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!
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!
Tuesday, August 29, 2006
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...
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...
Monday, August 28, 2006
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!!
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!!
Wednesday, August 23, 2006
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!!
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!!
Wednesday, August 16, 2006
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...
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...
Monday, August 14, 2006
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!!
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!!
Thursday, August 03, 2006
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!
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!
Thursday, July 27, 2006
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...
I'll keep you posted...
Sunday, July 23, 2006
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!
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!
Saturday, July 22, 2006
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)
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)
Thursday, July 13, 2006
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.
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.
Monday, July 10, 2006
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!
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!
Thursday, July 06, 2006
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!
Suddenly feeling a little light-headed this afternoon, but nothing too major.
Overall, still feeling GREAT!
Wednesday, July 05, 2006
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!
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!!
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!!
Monday, June 26, 2006
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.
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.
Sunday, June 25, 2006
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!!
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!!
Wednesday, June 21, 2006
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.
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.
Wednesday, June 14, 2006
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!!
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!!
Monday, June 12, 2006
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 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!
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!
Friday, June 09, 2006
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?
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?
Wednesday, June 07, 2006
"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!!
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!!
Tuesday, June 06, 2006
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.
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.
Thursday, June 01, 2006
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!
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!
Thursday, May 25, 2006
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 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!
Friday, May 19, 2006
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.
Thursday, May 18, 2006
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!!
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!!
Friday, May 12, 2006
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!
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!
Thursday, May 11, 2006
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!
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!
Tuesday, May 02, 2006
"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.
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.
Wednesday, April 26, 2006
Tuesday, April 25, 2006
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!
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!
Wednesday, April 19, 2006
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!
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!
Saturday, April 15, 2006
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!
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!
Tuesday, March 28, 2006
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.
Friday, March 24, 2006
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!
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!
Tuesday, March 21, 2006
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.
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.
Friday, March 17, 2006
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!
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!
Thursday, March 16, 2006
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!
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!
Wednesday, March 01, 2006
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!!
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!!
Wednesday, February 22, 2006
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! :)
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! :)
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