Sorry for the draggy news last week...today it seems years ago. This week has been better every day to the point that I'm actually a little hungry now and then!
Saw my oncologist on Friday and we're set for chemo again on Monday. She tinkered with a few things, especially with the steroid as she thinks the dosage may have contributed to my crash on Friday. Hopefully, this will reduce the impact of coming off the steroids at the same time I'm feeling the impacts of the Neulasta.
Jim and I are in the first test of the pattern of coming to the Bay area before the MD check in, staying with Damian and Sarah for the weekend and going back to San Mateo for chemo on Monday/Tuesday. It seems to be working pretty well...we've had a relaxing, easy time and it's been great to see everyone. Spent time with Joy, Jamie and Katy, too! I do, however, really miss the pets!
Hoping you are all having a great Sunday!
Sunday, July 25, 2010
Sunday, July 18, 2010
Off the Cliff July 18,2010
Hey All,
So here's the day-by-day after chemo...
Monday - chemo round one. A l
little headache, no appetite, nausea...all pretty much OK with meds.
Tuesday - Neulasta shot. Tired. Jim had to drive us all the way home. Little appetite, but OK overall.
Wednesday - able to work at home several hours. Tired but OK. Little appetite, but did eat light dinner! Friend visited overnight. Second short walk of the week!
Thursday - doing well. Attended two meetings, worked in my office. Ate pretty well...lightly. Tired at end of day.
Friday - crushed! So tired. No appetite. Slept all day. Achy. Low grade fever. Headache. Hard to even drink water. Feel awful! Not able to work as promised.
Saturday - better. Two naps, no walking outside, eating a little. Think yesterday was about the Neulasta. If so, hate it!
Sunday - better again. Can keep my head off pillow for a couple of hours at a time. Very limited appetite. Opened mail for the week...thank goodness nothing urgent. Weight down 6 lbs. this week. I called it the chemo diet - maybe so.
Was hopeful at the beginning of the week that this might be relatively OK to manage, but the end of the week changed my mind. Not looking forward to next round in 8 days. Jim is my stalwart...hard to think about this without him, not sure how I'd manage! From scrambling eggs to doing laundry, to taking me to appointments, so many things. I am soooo lucky!
Hope you are all having a great summer!
So here's the day-by-day after chemo...
Monday - chemo round one. A l
little headache, no appetite, nausea...all pretty much OK with meds.
Tuesday - Neulasta shot. Tired. Jim had to drive us all the way home. Little appetite, but OK overall.
Wednesday - able to work at home several hours. Tired but OK. Little appetite, but did eat light dinner! Friend visited overnight. Second short walk of the week!
Thursday - doing well. Attended two meetings, worked in my office. Ate pretty well...lightly. Tired at end of day.
Friday - crushed! So tired. No appetite. Slept all day. Achy. Low grade fever. Headache. Hard to even drink water. Feel awful! Not able to work as promised.
Saturday - better. Two naps, no walking outside, eating a little. Think yesterday was about the Neulasta. If so, hate it!
Sunday - better again. Can keep my head off pillow for a couple of hours at a time. Very limited appetite. Opened mail for the week...thank goodness nothing urgent. Weight down 6 lbs. this week. I called it the chemo diet - maybe so.
Was hopeful at the beginning of the week that this might be relatively OK to manage, but the end of the week changed my mind. Not looking forward to next round in 8 days. Jim is my stalwart...hard to think about this without him, not sure how I'd manage! From scrambling eggs to doing laundry, to taking me to appointments, so many things. I am soooo lucky!
Hope you are all having a great summer!
Wednesday, July 14, 2010
First Round Done - Seven to Go July 14, 2010
Hi Everyone!
We (and I always mean Jim and I, not just me) made it through the first round of chemo and Neulasta. It wasn't too bad all in all and so far. I'm on alert for changes for the next few days, as I get eased off of routine nausea med and steroids and back to regular drug effects. I do have lots of "as needed" meds if nausea pursues beyond these first few days...thank goodness.
The out-patient setting at the doc's office is relaxing, organized and very professional. First comes the IV insert (these nurses rock! No pain), then the Aloxi a new and wonderful anti-nausea med, along with a dose of steroid to make the whole thing work better. Then two big IV push syringes of Adriamyin - red punch color, terrible on veins, carefully given. Then a bag of Cytoxan for about an hour. I managed to knit, listen to a book, talk to Jim, rest. Total of about three hours in the office, then on our way. I actually ate lunch at Taco Bell - my favorite comfort food - and the last I've seen so far.
By about 3 pm, had a low-grade headache which Tylenol didn't cut. By 4 pm slightly nauseated. Ate a few graham crackers. Eventually went to watch Jim eat dinner. I managed a 1/2 cup of refried beans and a piece of bread with water. Where's my wine? Where's the fish I so love?
Took my evening cocktail - a mighty combination of Compazine, dexamethasone, ativan and Vicodin for headache. With the exception of the Vicodin for post-op pain, I've never taken any of the other drugs...but together they made for a good night's sleep.
Yesterday, to oncologist office again for Neulasta shot. This is a colony stimulating factor drug, pegylated to be long lasting. As the chemo wipes out my bone marrow's capability to make blood cells, the Neulasta kicks in with the message to get going again. This lets the docs give my chemo on a two-week rather than a three-week cycle.
Jim had to drive the whole way home (poor sweet baby!)as I was pretty much sleeping the entire trip. We're having to reconsider our plan that I do some of these on my own...may need to enlist one or two of you for drive/fly combos to get me through this mess. We have the next round figured out, though, as Jim has some work in the area when I need to be there for tretment.
Now that you know way more than you'd like about this mess, today is going OK. Still little appetite and tired. I think some of the tired is about effect of the Emend anti-nausea drug. Still hoping to do a little resting, a little working and some knitting today.
We have a beautiful sunny day here! I'm also going to sit on the front porch and watch it for a bit. Maybe take Scout for a walk - we're both supposed to be getting exercise.
Thank you for all your good wishes, cards, calls and more! Am loving hearing from you and thinking of you often. Love, xoxoxoxoxoxoxoMom/Susan
We (and I always mean Jim and I, not just me) made it through the first round of chemo and Neulasta. It wasn't too bad all in all and so far. I'm on alert for changes for the next few days, as I get eased off of routine nausea med and steroids and back to regular drug effects. I do have lots of "as needed" meds if nausea pursues beyond these first few days...thank goodness.
The out-patient setting at the doc's office is relaxing, organized and very professional. First comes the IV insert (these nurses rock! No pain), then the Aloxi a new and wonderful anti-nausea med, along with a dose of steroid to make the whole thing work better. Then two big IV push syringes of Adriamyin - red punch color, terrible on veins, carefully given. Then a bag of Cytoxan for about an hour. I managed to knit, listen to a book, talk to Jim, rest. Total of about three hours in the office, then on our way. I actually ate lunch at Taco Bell - my favorite comfort food - and the last I've seen so far.
By about 3 pm, had a low-grade headache which Tylenol didn't cut. By 4 pm slightly nauseated. Ate a few graham crackers. Eventually went to watch Jim eat dinner. I managed a 1/2 cup of refried beans and a piece of bread with water. Where's my wine? Where's the fish I so love?
Took my evening cocktail - a mighty combination of Compazine, dexamethasone, ativan and Vicodin for headache. With the exception of the Vicodin for post-op pain, I've never taken any of the other drugs...but together they made for a good night's sleep.
Yesterday, to oncologist office again for Neulasta shot. This is a colony stimulating factor drug, pegylated to be long lasting. As the chemo wipes out my bone marrow's capability to make blood cells, the Neulasta kicks in with the message to get going again. This lets the docs give my chemo on a two-week rather than a three-week cycle.
Jim had to drive the whole way home (poor sweet baby!)as I was pretty much sleeping the entire trip. We're having to reconsider our plan that I do some of these on my own...may need to enlist one or two of you for drive/fly combos to get me through this mess. We have the next round figured out, though, as Jim has some work in the area when I need to be there for tretment.
Now that you know way more than you'd like about this mess, today is going OK. Still little appetite and tired. I think some of the tired is about effect of the Emend anti-nausea drug. Still hoping to do a little resting, a little working and some knitting today.
We have a beautiful sunny day here! I'm also going to sit on the front porch and watch it for a bit. Maybe take Scout for a walk - we're both supposed to be getting exercise.
Thank you for all your good wishes, cards, calls and more! Am loving hearing from you and thinking of you often. Love, xoxoxoxoxoxoxoMom/Susan
Tuesday, July 6, 2010
What's New...7/6/2010
Hi Everyone,
Hoping you had a great 4th of July! We did...although I'm still a bit slow and get tired, Jim and I were lucky enough to see our local parade and Front Street celebration (in sunny, beautiful but windy weather by the sea!) with Damian and Sarah, Mike and KC. It was so good to see them all and to get caught up on the news. We decided not to go to the fireworks (hmm, actually I was asleep on the couch before 8:30 p.m.)...and it turned out to be the only non-foggy display since we've been here! Oh well...
Life is progressing along and I feel lucky to have an extra ten days before starting chemo. The last drain came out on June 30 - thank heavens! - and I decided to stay on the previous chemo schedule with a start date of 7/12. Not looking forward to it, but I am really appreciating the break from travel and medical stuff and just staying at home.
Jim and I got an email from a colleague yesterday asking us to speak at the Relay for Life kick off dinner this Friday. I've been thinking about it and we've agreed to do it...but I feel a bit of a fraud. This is, I think, the survivor's dinner - women who've actually been through the whole experience and come out the other side with some time under their belts. I'm in the middle of this whole process and am clearly not an expert or a survivor of much more than a few surgeries and life in general. I was awake last night trying to figure out what to say...it'll come to me eventually.
Continued many thanks for all the good wishes and support! You are all great blessings in our lives! Susan
Hoping you had a great 4th of July! We did...although I'm still a bit slow and get tired, Jim and I were lucky enough to see our local parade and Front Street celebration (in sunny, beautiful but windy weather by the sea!) with Damian and Sarah, Mike and KC. It was so good to see them all and to get caught up on the news. We decided not to go to the fireworks (hmm, actually I was asleep on the couch before 8:30 p.m.)...and it turned out to be the only non-foggy display since we've been here! Oh well...
Life is progressing along and I feel lucky to have an extra ten days before starting chemo. The last drain came out on June 30 - thank heavens! - and I decided to stay on the previous chemo schedule with a start date of 7/12. Not looking forward to it, but I am really appreciating the break from travel and medical stuff and just staying at home.
Jim and I got an email from a colleague yesterday asking us to speak at the Relay for Life kick off dinner this Friday. I've been thinking about it and we've agreed to do it...but I feel a bit of a fraud. This is, I think, the survivor's dinner - women who've actually been through the whole experience and come out the other side with some time under their belts. I'm in the middle of this whole process and am clearly not an expert or a survivor of much more than a few surgeries and life in general. I was awake last night trying to figure out what to say...it'll come to me eventually.
Continued many thanks for all the good wishes and support! You are all great blessings in our lives! Susan
Saturday, June 26, 2010
Plans Change 6/26/2010
Hello on this fine Saturday!
We know with this invader that nothing can be easily planned or considered the final word. All parts of this equation are moving at all times. And, what was to be a few tests, some doc appointments and starting chemo last week has been re-ordered.
After surgery (6/11/10) I left the hospital with three drains in place. Two were removed at my one week check-up and I came home with one. The drains are in place to remove excess fluid as swelling and other surgical injuries heal. The volume of drainage has to be below 30 ml in 24 hours for a drain to come out. The third drain is still significantly above that level and it couldn't be removed on Friday as anticipated. It's somewhat of a risk for infection and other complications to start chemo with an open drain in place, so the chemo has been postponed. We're hoping that the drain can be removed next week. Right now, I'm scheduled for chemo starting on 7/12/10.
We're home again...hooray! Our pets are pretty cling-y. They don't know what's up, just that we're gone a lot lately. Plans for today are to watch tennis (Wimbledon), watch World Cup soccer, unpack, walk the dogs, rest, knit...got the idea? Being lazy is high on both of our lists this weekend.
Many thanks to all of you for the good wishes, love, and support...Jon, Kathy, Joy, kids, Dan, Marianne, Susan, Patti, Geneva, Eugene, Anne, Carol, Damita, Rachel, Michele, Rick, Robin, Stacey, Jill, Kevin, Laura, Kevin, the noon Rotary, Marie, Joe, Karen, Sandy, Susan, Michelle, Kelly, Melody, Linda, Mike, KC, Jeff, Debra, Sarah, Jessie, Leapha, Margaret, Dick, Dot...I know I've missed many names and I'll try to add more later. It's been overwhelming - the support, the love, the prayers, the offers of help, the kind words, letters, emails and cards. If you don't see your name here, it's my fault...please know that your words and thoughts are so much appreciated.
To those of you who've walked this path or are walking it now, I'm sure you know about the phases of emotion and thinking that you go through with this diagnosis. Many of you have offered to share your experiences with me, to help me know what to expect at many levels. I'm a pretty independent cuss and, with my love and best friend at my side, haven't felt able to reach out yet to talk about experiences of others or to talk about mine. I know you know that everyone does this journey in their own way and hope you know that I have your names in my pocket as important folks to be in touch with when my head is ready. I know you are there and I so appreciate your willingness to dive into this with me. You will likely hear from me at some point; i'm just not sure when that point will arrive.
Our love to all of you! More soon. xoxoxoxoxSusan
We know with this invader that nothing can be easily planned or considered the final word. All parts of this equation are moving at all times. And, what was to be a few tests, some doc appointments and starting chemo last week has been re-ordered.
After surgery (6/11/10) I left the hospital with three drains in place. Two were removed at my one week check-up and I came home with one. The drains are in place to remove excess fluid as swelling and other surgical injuries heal. The volume of drainage has to be below 30 ml in 24 hours for a drain to come out. The third drain is still significantly above that level and it couldn't be removed on Friday as anticipated. It's somewhat of a risk for infection and other complications to start chemo with an open drain in place, so the chemo has been postponed. We're hoping that the drain can be removed next week. Right now, I'm scheduled for chemo starting on 7/12/10.
We're home again...hooray! Our pets are pretty cling-y. They don't know what's up, just that we're gone a lot lately. Plans for today are to watch tennis (Wimbledon), watch World Cup soccer, unpack, walk the dogs, rest, knit...got the idea? Being lazy is high on both of our lists this weekend.
Many thanks to all of you for the good wishes, love, and support...Jon, Kathy, Joy, kids, Dan, Marianne, Susan, Patti, Geneva, Eugene, Anne, Carol, Damita, Rachel, Michele, Rick, Robin, Stacey, Jill, Kevin, Laura, Kevin, the noon Rotary, Marie, Joe, Karen, Sandy, Susan, Michelle, Kelly, Melody, Linda, Mike, KC, Jeff, Debra, Sarah, Jessie, Leapha, Margaret, Dick, Dot...I know I've missed many names and I'll try to add more later. It's been overwhelming - the support, the love, the prayers, the offers of help, the kind words, letters, emails and cards. If you don't see your name here, it's my fault...please know that your words and thoughts are so much appreciated.
To those of you who've walked this path or are walking it now, I'm sure you know about the phases of emotion and thinking that you go through with this diagnosis. Many of you have offered to share your experiences with me, to help me know what to expect at many levels. I'm a pretty independent cuss and, with my love and best friend at my side, haven't felt able to reach out yet to talk about experiences of others or to talk about mine. I know you know that everyone does this journey in their own way and hope you know that I have your names in my pocket as important folks to be in touch with when my head is ready. I know you are there and I so appreciate your willingness to dive into this with me. You will likely hear from me at some point; i'm just not sure when that point will arrive.
Our love to all of you! More soon. xoxoxoxoxSusan
Saturday, June 19, 2010
Home Again! 6/19/2010
Home again we are! And, so glad to be here! We have so missed being in our space and, even more, with all of our very special babies. Michelle, who takes care of house and pets, does a wonderful job...but it's our home and we have missed all of its nuances.
I'm doing well post-op. Little pain, mostly just tired. Path results were both OK and bad: mastectomy got all of cancer in breast, but axillary nodes were 23/24 cancerous. Still, chest xray, bone scan, CT of chest, abdomen and pelvis were negative...no distant metastasis. And, no other nodes were seen to have cancer.
My medical oncologist said I'm "cancer free" and that treatment should be aimed at full " cure.". The quotes are mine on her exact words...the surgery supposedly got all the cancer in my body and remaining circulating cells are supposed to be killed off by chemo, radiation, and long-term hormone therapy. Keep your fingers crossed!
We go back to doctors for more post-op follow-up on Thursday next week, for chemo education, some blood work and finally for starting chemo on Monday 6/28, if everything is OK. Chemo will be rough - every two weeks for four months. Then I'll get a month to rest and then 33 radiation treatments. If all goes well, the hard part will be done.
We're still working on logistics, but we think that we will start by going to San Mateo for about 5 days out of every 14...for chemo and other required medical follow-up. Once I'm in the routine and know more about how I will feel with the chemo, we're thinking that maybe Jim won't have to come every time. He is my rock, so it will be a big transition but we also need to try to have something a little normal in our lives right now. His boss is being absolutely wonderfully supportive so no pressure from that side at all. We really appreciate it - and still want to stay on track as much as we can on most life fronts. Trying to balance, as always.
That's it for now. We've been home an hour or so. Birds, dogs and cats are settling. Jim's in his garden checking for weather damage and hoping for tomatoes. Nap time for me! Love to all, Susan
I'm doing well post-op. Little pain, mostly just tired. Path results were both OK and bad: mastectomy got all of cancer in breast, but axillary nodes were 23/24 cancerous. Still, chest xray, bone scan, CT of chest, abdomen and pelvis were negative...no distant metastasis. And, no other nodes were seen to have cancer.
My medical oncologist said I'm "cancer free" and that treatment should be aimed at full " cure.". The quotes are mine on her exact words...the surgery supposedly got all the cancer in my body and remaining circulating cells are supposed to be killed off by chemo, radiation, and long-term hormone therapy. Keep your fingers crossed!
We go back to doctors for more post-op follow-up on Thursday next week, for chemo education, some blood work and finally for starting chemo on Monday 6/28, if everything is OK. Chemo will be rough - every two weeks for four months. Then I'll get a month to rest and then 33 radiation treatments. If all goes well, the hard part will be done.
We're still working on logistics, but we think that we will start by going to San Mateo for about 5 days out of every 14...for chemo and other required medical follow-up. Once I'm in the routine and know more about how I will feel with the chemo, we're thinking that maybe Jim won't have to come every time. He is my rock, so it will be a big transition but we also need to try to have something a little normal in our lives right now. His boss is being absolutely wonderfully supportive so no pressure from that side at all. We really appreciate it - and still want to stay on track as much as we can on most life fronts. Trying to balance, as always.
That's it for now. We've been home an hour or so. Birds, dogs and cats are settling. Jim's in his garden checking for weather damage and hoping for tomatoes. Nap time for me! Love to all, Susan
Monday, June 14, 2010
Post-op Progress 6/14/2010
Hi everyone!
Made it through surgery without problems...was discharged the next day before noon (unbelievable to the old nurse in me!). Am doing well on all fronts. Food good; pain not much; sleeping well. Am walking outside just trying to get my energy back.
I know that's not much in the way of an update health wise, but that's all there is. Joy, Jamie, Katy, Damian and Sarah all visited between Saturday and Sunday. Was great to see and talk to everyone - we hadn't seen any of them for months...way too long! Everyone seems to be doing well, with lots of stories, laughs and, likely, a few tales left untold -as it should be.
We are staying at a friend's house in Foster City while he is out of town. It's great to have non-hotel space, with the ability to cook, do laundry, etc. Not that I'm doing too much...more like playing princess for me. Jim's the one who's been taking care of everything, and working long-distance, too!
I have doctor appointments this week and may have path reports back by the end of the week. It seems sure that at least chemotherapy is in my future. Does anyone know of a house/condo/apartment/RV/boat available to rent for four months or so? We're looking for a base during chemotherapy, especially one that would allow a pet or two. Oh, and San Mateo area is what we are thinking.
We appreciate all the love and support you have sent our way. We are trying to inhale all the great energy! Much love, Susan & Jim
Thanks everyone for all your love and support! We have both been inhaling it and appreciate the great energy! Much love, Susan and Jim
Made it through surgery without problems...was discharged the next day before noon (unbelievable to the old nurse in me!). Am doing well on all fronts. Food good; pain not much; sleeping well. Am walking outside just trying to get my energy back.
I know that's not much in the way of an update health wise, but that's all there is. Joy, Jamie, Katy, Damian and Sarah all visited between Saturday and Sunday. Was great to see and talk to everyone - we hadn't seen any of them for months...way too long! Everyone seems to be doing well, with lots of stories, laughs and, likely, a few tales left untold -as it should be.
We are staying at a friend's house in Foster City while he is out of town. It's great to have non-hotel space, with the ability to cook, do laundry, etc. Not that I'm doing too much...more like playing princess for me. Jim's the one who's been taking care of everything, and working long-distance, too!
I have doctor appointments this week and may have path reports back by the end of the week. It seems sure that at least chemotherapy is in my future. Does anyone know of a house/condo/apartment/RV/boat available to rent for four months or so? We're looking for a base during chemotherapy, especially one that would allow a pet or two. Oh, and San Mateo area is what we are thinking.
We appreciate all the love and support you have sent our way. We are trying to inhale all the great energy! Much love, Susan & Jim
Thanks everyone for all your love and support! We have both been inhaling it and appreciate the great energy! Much love, Susan and Jim
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