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!
Thursday, May 25, 2006
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! :)
Tuesday, February 21, 2006
Here's the Latest
For those of you who don't know, my tumor marker number went up again in the past month. I am now at 349. I doubt that many (any?) of you really keep track of that actual number, but I throw it in here for my own benefit so I can look back and see where I've been and where I'm at.
One of the issues that was weighing heavy on my mind was where to send Dominic next week while we're at Mayo. In a semi-serious tone he asked if he could stay with his buddy, Ryan. So I called Ryan's Mom tonight and she said she would be only too happy to have him there. One more thing I can check off my list!
I saw Dr. Kumar today. He, his nurse, and Dr Schulz's nurse (Dr S wasn't around) all seemed genuinely thrilled for me that I was able to get an appointment so quickly and easily at Mayo. They're all pleased that I'm going there to seek another opinion. In fact, Dr K said I'm almost doing him a favor because he's debating what medication to put me on next (eliminating the Faslodex) and now we can see what they recommend at Mayo. He smiled and laughed when he said that...and so did I.
I get the impression that Dr K and Dr S are not in total agreement about the radiation, so it will also be good to have another opinion on that issue. And Dr K reiterated today that he wants to delay chemo for as long as possible. Chemo for me this time will not be like it was in the past. It wouldn't be 4 sessions and done. It would be more like X number of sessions, take a little recovery break, do more chemo, another break, more chemo, break, chemo, break, chemo, break, etc, etc, etc.
Tomorrow is Brian's birthday. I have to run and finish the "assembly process" of his gift. He's very hard to shop for. I hope he likes this surprise...I'm pretty confidant he will. (can't give it away in case he decides to check in on the blog himself)
I imagine I'll post once or twice more before we leave for MN. Until then...good night, and God bless.
One of the issues that was weighing heavy on my mind was where to send Dominic next week while we're at Mayo. In a semi-serious tone he asked if he could stay with his buddy, Ryan. So I called Ryan's Mom tonight and she said she would be only too happy to have him there. One more thing I can check off my list!
I saw Dr. Kumar today. He, his nurse, and Dr Schulz's nurse (Dr S wasn't around) all seemed genuinely thrilled for me that I was able to get an appointment so quickly and easily at Mayo. They're all pleased that I'm going there to seek another opinion. In fact, Dr K said I'm almost doing him a favor because he's debating what medication to put me on next (eliminating the Faslodex) and now we can see what they recommend at Mayo. He smiled and laughed when he said that...and so did I.
I get the impression that Dr K and Dr S are not in total agreement about the radiation, so it will also be good to have another opinion on that issue. And Dr K reiterated today that he wants to delay chemo for as long as possible. Chemo for me this time will not be like it was in the past. It wouldn't be 4 sessions and done. It would be more like X number of sessions, take a little recovery break, do more chemo, another break, more chemo, break, chemo, break, chemo, break, etc, etc, etc.
Tomorrow is Brian's birthday. I have to run and finish the "assembly process" of his gift. He's very hard to shop for. I hope he likes this surprise...I'm pretty confidant he will. (can't give it away in case he decides to check in on the blog himself)
I imagine I'll post once or twice more before we leave for MN. Until then...good night, and God bless.
Saturday, February 18, 2006
After a Bit of Discussion...
...this is what Brian and I have worked out:
We are going to leave for Minnesota on Monday, the 27th, after Dominic heads off to school. (so, no, he is not going along with us) We plan to just get a hotel room in Rochester for Monday night so we don't have to get up at 4am in Mankato on Tuesday! As of right now, we think we'll 'hotel' it on Tuesday night also. If we need to stick around Wednesday night we'll probably make the trip to Mankato then.
Today I'm searching through all my bags/boxes/containers to see what I have that will most easily accomodate all my many records, reports, x-rays, pathology slides, etc. It's a LOT of stuff! And HEAVY! Good thing I'll have Brian's muscles along. He suggested we get a shopping cart. :-)
It was 15 below zero here when we woke up this morning, and windy. Brrrrr. For oh so many reasons, we will need to just veg on sunny, sandy beaches soon.
Off I go to dig through closets. Find something to do inside today and snuggle up!
We are going to leave for Minnesota on Monday, the 27th, after Dominic heads off to school. (so, no, he is not going along with us) We plan to just get a hotel room in Rochester for Monday night so we don't have to get up at 4am in Mankato on Tuesday! As of right now, we think we'll 'hotel' it on Tuesday night also. If we need to stick around Wednesday night we'll probably make the trip to Mankato then.
Today I'm searching through all my bags/boxes/containers to see what I have that will most easily accomodate all my many records, reports, x-rays, pathology slides, etc. It's a LOT of stuff! And HEAVY! Good thing I'll have Brian's muscles along. He suggested we get a shopping cart. :-)
It was 15 below zero here when we woke up this morning, and windy. Brrrrr. For oh so many reasons, we will need to just veg on sunny, sandy beaches soon.
Off I go to dig through closets. Find something to do inside today and snuggle up!
Friday, February 17, 2006
Rochester, Here I Come
It's official! I have an appointment at the Mayo Clinic in Rochester at 7am on Tuesday, February 28th. I'm not sure yet if we'll go west on the Saturday, Sunday, or Monday before. There are a number of things to factor in.
So on my lunch hour today I will begin to gather my records. That's a pretty big undertaking with 5 years of information to gather.
I will keep you posted on how the plans work out. They said to plan on 1-3 days. Throw in travel time and we're looking at practically a whole week! Not sure yet what to do with Dominic. Hate to yank him out of school for this, but also hate to be gone a week at Mayo and then gone 10 days on vacation and see him only on Friday.
Anyone available to keep Dominic at your house if we leave him behind while in MN? (he'll HATE that!) Also, Brian has his pre-op for his knee surgery on March 2nd, so maybe he'll need to stay home with Dominic so he can keep that appointment. If that happens, is anyone available for a road trip --- either all the way from WI, or just from Mankato? I don't mind doing the drive myself, if it comes to that. I just don't know that I want to sit alone for hours on end at Mayo.
I'm glad that they're able to get me in before the radiation is scheduled to begin. Our insurance may be fairly useless for this additional opinion, but it will be worth every cent! You can't put a price on peace of mind!!
Stay warm...
So on my lunch hour today I will begin to gather my records. That's a pretty big undertaking with 5 years of information to gather.
I will keep you posted on how the plans work out. They said to plan on 1-3 days. Throw in travel time and we're looking at practically a whole week! Not sure yet what to do with Dominic. Hate to yank him out of school for this, but also hate to be gone a week at Mayo and then gone 10 days on vacation and see him only on Friday.
Anyone available to keep Dominic at your house if we leave him behind while in MN? (he'll HATE that!) Also, Brian has his pre-op for his knee surgery on March 2nd, so maybe he'll need to stay home with Dominic so he can keep that appointment. If that happens, is anyone available for a road trip --- either all the way from WI, or just from Mankato? I don't mind doing the drive myself, if it comes to that. I just don't know that I want to sit alone for hours on end at Mayo.
I'm glad that they're able to get me in before the radiation is scheduled to begin. Our insurance may be fairly useless for this additional opinion, but it will be worth every cent! You can't put a price on peace of mind!!
Stay warm...
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