For us, 2010 sucks!
Last week was a bad one. Not for me, mind you - it was actually good for me. But, for us...not so good. We had to let our little girl dog Jazmin go. She was 15 1/2 years old and had been with us for 8 years. She started our Beagle craze and was always such a sweet girl. She took care of ears, noses and parts for the other dogs. A puppy at heart, Jaz pounced and played for as long as she could. At the end, she just had so many things in the way of the life she loved. We think she's still got her crazy "bucket" with her in heaven.
2010 sucks, part two last week: Someone we know became critically ill in recent weeks, and last week made the decision to go on hospice care. It's not been long since she was working -a vital, fun, smart woman. There is so much more to say about this lovely lady, but for now we just cannot believe how rotten this is for her and her family. We are thinking of you.
Not sure what else to say. We're trying to be positive, forward thinking about cancer and all this treatment stuff. But you know, a few days like those last week and it's hard not to write the entire year off and get discouraged all the way around. Generally, I've been putting my whole situation in a job box called "cancer treatment.". It's a job to do -not that pleasant, not a client I would have chosen given the chance, but necessary. This week, it's been hard to keep my cancer box separate from the rest of life - many tears last week and probably not all of them just for our friends lost.
A couple of notes: if you've been trying to comment directly on the blog, you should now be able to scroll down after reading this, click on the box and write away. I look forward to hearing from you!
I had a chance to talk with Susan E this week - thanks much, Susan! A bright spot in the week!
Monday is chemo round 3. Hopefully, it will go much like last time which was better than the first round.
Hoping we all have much better weeks than last week - even if you won the Lotto last week!
Sunday, August 8, 2010
Monday, August 2, 2010
Posting Comments August 2, 2010
Hi Everyone!
Thanks for the emails and comments about the new "doo." I'm gonna send you a pic of my wig soon - just have to get up the nerve to actually wear it.
This quick post is to let you know that I think I've figured out what to do to allow everyone to post to the blog without long, elaborate steps. You should now be able to click on the link that says "Post Comments" and write away. Hope this helps - and thanks to all those who've been emailing me anyway!
Have a great day!
Thanks for the emails and comments about the new "doo." I'm gonna send you a pic of my wig soon - just have to get up the nerve to actually wear it.
This quick post is to let you know that I think I've figured out what to do to allow everyone to post to the blog without long, elaborate steps. You should now be able to click on the link that says "Post Comments" and write away. Hope this helps - and thanks to all those who've been emailing me anyway!
Have a great day!
Sunday, August 1, 2010
Round Two - No Hair! August 1, 2010
Hello Everyone!
Hope you're enjoying the beautiful "middle" of summer! In Crescent City (or just outside where we live), the day started with a marine layer that burned off around noon. it's brilliantly sunny right now, in the high 60's...yep, you should be jealous. I know it's at least 80+ in Sacramento and surrounds. Am sorry for you bakers!
I've made it through three weeks of chemo - the second dosing round, plus a week - and am doing better this time. When I met with my oncologist before this dosing, she made some changes to try to reduce the "crash" I had on the Friday after the first round. She thought (and I think she was right, not that it matters) that part of being totally out of commission on that first Friday was due to the steroid withdrawal that kicked in. So, she reduced the amount of steroid I took post-chemo and it seems to have helped. I have more energy (can you tell?), though did spend most of yesterday sleeping and resting.
Here's the big news: no more hair. It started to fall out exactly 14 days after the first chemo and came out in huge handfuls. I got my hair cut really short a couple of weeks before I started chemo to make it even easier to handle, but was still surprised at what a big mess all those hairs make. By Thursday, I looked like Brad Pitt in the movie where he ages backwards (not cute though; just old and wispy). Took to wearing scarves and suddenly EVERYONE who didn't already know what was up is looking at me funny and asking Jim questions behind my back. As Jim says, now I look sick.
Attached is a pic so you can see what the shaved look is like - not my best look, though I think I have a strong resemblance to my brother Mike. Scary for one of us, hey Mike? The good news is that shaved feels so much better than not. Really. When it started to fall out, my scalp felt like I had a second-degree sunburn and the hair actually seemed to hurt right at the scalp level. At least now there's no tugging and the sunburn feeling is receding.
About the picture: Jim insisted on putting a pillow behind me for "background." That makes me look like all I do is lounge in bed - and, really, I make it to the bathroom and the couch! And, the red spot over the left side of my lip...it's been there for a few years and my docs and I have treated it like the other brown, sun damaged spots on my face. With the chemo, however, this one spot has turned into a red, scabby thing. Jennifer says it may be a pre-cancerous something that's getting some treatment with the chemo. We're "watching" it at this point. Just what I need, right?
BTW: the dogs and cats don't notice any difference with or without hair. But, Booker and Salvadore (our parrots) are quite skittish. They seem to know that it's me at some level, but the combination of no head "feathers" and scarves/berets have them all confused. They never did like me in hats anyway. Who's smartest? I personally never use the phrase "bird brain" as a derogatory.
Am hoping to be able to work this next week until I leave for the Bay Area again for round three. This time, I'm going to drive myself down and Jim's going to take care of house, pets and his own work! If I had to do it today, driving down alone would be difficult - I'm still really wiped out. But, I think by Thursday I'll be back in the saddle...at least I was the first round. Joy is going to drive me home after the chemo/Neulasta as I haven't mastered enough energy to do that one yet.
Continued thanks to all of you for the love, cards, good wishes, gifts, and help! I wish I could see you all and spend time with you - but just don't have enough energy. I'm 1/4 through the chemo part! Yeah! Am thinking about what great trip might be in store for Jim and me when all this is done...ideas welcome!
Sunday, July 25, 2010
A Better Week - July 25, 2010
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!
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 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
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