Anyone starting Chemo in Feb?
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Pat...so sorry you had such an ordeal, but so happy there is no new cancer.
Hugs to Marsha and Twilah too!
Keep warm everyone!
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Time for an update, so I've been instructed...!. With these postings, I'm never certain whether to be brutally (well maybe not quite) honest, or to temper what's going on day-to-day to protect us all to some degree. I believe I have a strategy to let me manage both. So, my day-to-day... brutally honest...yew...SUCKS!
On the complaint side:
- 2nd round of radiation (15 shots) to the cervical/lumbar area to reduce to lepto- meneges finished 1/29: I'm exhausted and have rare buttocks to ‘boot'
- 1st round of radiation (15 shots) was to the whole brain: I was sufficiently energized to be able to do most of Xmas day meal prep (hard to look back on that and imagine I was able to do that)
- I'm bald....again...from the first round of rads
- I'm being weaned off the steroids (from 4 tabs - 1 tab by next week, Then 0). Hopefully my appetite and body shape will start to look normal (I AM THE MICHELIN MAN!)
- Liver lesion(s) are more prominent on the last PET/CT scan and next one is scheduled for 1/29
- Right let/foot is still gimpy. They tell me stopping the steroids will eliminate that problem.
- Buttocks are raw from rads but it's getting better - makes it awkward to lay down, makes it dangerous to standup (TTIMMMMBEERR ....CRASH!)
- Other complaints are minor I suppose... sore hips, poor sleeping, headaches, general imbalance and now high blood pressure meds (never, ever had this problem before but apparently another reaction to the ever rising # of prescriptions), diarrhea, dry skin, hemorrhoids, general aches and pains but enough of that...
- Trying to schedule, infusions, appointments, scans, etc seems to me the most mentally challenging and I wonder if that's my brain or the complexity of the schedule of the ongoing infusions with a few new curves thrown in.
On the positive side:
- Chemo has been switched to a version I can take orally over 5 days at home - no infusion! (temodar, replacing Abraxane for the time being)
- The new chemo will pass the blood brain barrier and do some clean up in the spinal cord and brain area
- Dr.O'S believes the Avastin was having the most positive effect on treatment but will put back in Abraxane when/if necessary
- I'm not using a walker but am considering grip bars for the commode and bath (got stuck in my new bath the other night and it wasn't a pretty sight watching Phill in his socks and sweats hauling me out of the monster Jacuzzi!)
- Radiation is over so everything should start to look up soom
- Renovations are almost over.....YAY
- Temodar is supposed to be highly effective when combined with radiation
- I have a cool walking stick to help me get around - did I mention that it has a compass??
So the Tx schedule is:
- Avastin and Zometa (infusion)
- Temodar (at home) 5days (makes me feel yecky and nauseous but could be the accompanying Zofran (THIS COMING WEEK)
- Avastin
- Zometa (can be taken every 3 weeks)
The schedule is a work in progess yet.
Doc wants to see me every 2 weeks as the Temodar is introduced- the effects on CBC need to be monitored.
Well I do believe these are some of the details I should be sharing for our benefit. If it's TMI, let me know privately and I can temper it. I know we're not all in the exact same boat and I'm concerned that you will stew more on recurrence details instead of getting on with your wonderful lives despite the crap some of you /we have been thrown. I love you all and rely on you for you support (which you have been generously providing and me apparently not so much as I would like). I decided that as much as I wanted my own posse of pigs, we are more than a bunch of smart little piggies and there is more that just a single oinker struggling. I have stopped doing much research and I don't look at statistics (much). I am alive now as are you all. It takes weeks for me look back and see a decline in my mobility or general wellbeing. I am still very hopeful that recovering from these much more invasive treatments will make life better. I've got a few weeks to go. Marsha and Pat, I hope the same is true for you and that your situations are on the upswing. I'm thinking about you.
I am gradually making it through a list of notes. Please bear with me...neuropathy was another complaint (feet and hands). I will make it through the notes - it's good practice.
I love you all.
I'll be back.
t
A yak is a prehistoric cabbage: of that, at least, we may be sure.
-from "Notes from the Air" by John Ashbery
And...this we know to be true always....
We should be careful
Of each other, we should be kind
While there is still time.-from"The Mower" by Philip Larkin
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{{{{{{{{{{{{{{{Twilah}}}}}}}}}}}}}}}}}}}} thinking of you always and inspired by your courage. You are a terrific woman!!! Do not "spare" us, we are here for you... Love, Catherine
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Love you Twylah!
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Twilah; I can imagine that this post was not the eaiest for you. I appreciate your honesty for so many different reasons. Knowledge is Power..,as is Determination. As for me, I don't dwell on the possibility of a recurrence, but the reality is always somewhere in my mind. How can it not be? One of my concerns right now is that there are possible preventatives for bone mets that I don't think that we are getting enough information from our oncs. I don't think my care has been the best since I am not close to a major breast center, so now I need to explore more options. I have learned so much here. You are such an amazing source of information...during chemo and now. Love you.
Pat: I hope you have someone helping you right now. What a relief that there was no more cancer!
Marsha; I was in Disney for the last 4 days, but I could not arrive or leave early to come to see you. I had to be there to help with Natalie in the airports. Edwin has been in New Mexico for 10 days and I can't be gone anymore until he returns...probably middle of next week. Poor man says he's out of underwear. Do they not have laundromats? LOL. I still plan on getting out there to see you soon. Please let us know how you are doing right now. A one liner will do!
Catherine; It is always nice to chat with you. I really did enjoy the music and it certainly fit with my mood this evening. I should have had another glass of champagne!
Sammie and Vegas; Darn...you guys missed each other! Vegas, I guess I get checked pretty closely. I do bloodwork every 3 months still. My bone and ct scans get stretched out a little more each time. I am at 9 months now. I think that when those get stretched to yearly, it could make me more apprehensive...even though I know the scans are not good for my body. It seems we are all treated differently by our oncs. They seem to make their own rules with no real standards for followup testing.
Carynn; What a cute new "do". Is it short and wedged in the back? That's a popular look. I still have a head full of very thick crazy curls, but I rather enjoy the look.
Leah; Got your message. I had left my phone in the car while I was in the office today. Call me when you get a chance!
I have to share a little tidbit from my trip. We were on the Disney yacht (Leah, Twi and Marsha will remember this boat) and Natalie was sitting in my lap watching the fireworks show "Wishes". They were playing the song about wishes and dreams, etc. Natalie throws her arms out and says so sweetly..."Nana, all my wishes have come true". I got all teary eyed. She still holds my heart in her little hands. Alyson, I bet you are understanding that feeling...
If there ever comes a day we can't be together, keep me in your heart,,, I'll stay there forever...Winnie the Pooh
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Twilah, I hope you will always feel like you can tell us anything and everything. This is the place to let it all hang out. We are all going to think about recurrence anyway in the corners of our minds, but hopefully we don't let it ruin even a moment of our precious lives that we have today cause worrying won't change a thing. And if we can help even a small bit by giving you the support and hugs you need while you are continuing this battle, we are all in!
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Oh Twilah, I am so glad you posted. I think of you daily. I don't mind your detailed post, as it helps us understand what you are going thru. As for us worrying about recurrence, we will do that anyway. I don't dwell on it, but I do worry. Especially as I come up on an Onc appt (Feb 2for me)
No wonder you are exhausted....I was confused by all those treatments and schedules....would definitely have to be writing it down and checking them off. ((((Twilah))))
Hope everyone else is doing well...especially ((((Marsha)))) and (((Pat))))
Happy Sunday!
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Hi all
Big hugs Twilah, and thanks for the post, if you can't tell us who can you tell?
I had a wonderful few days away with friends from student days - just the girls this time it was great and made me realise how important friends are. Friends old and new. They were asking questions about what had happened and even though two of them had mothers who had had breast cancer I felt that it is those who have been on this journey themselves who really know how you are feeling. They have been great over the last two years but it is really you 'girls' on our cruise who have helped me get through. I am so pleased I found the site very very early one morning when I was surfing the net to find out about the chemo I was about to start.
Today is a little strange for me. I am not going to school. The term starts next week but normally I would be getting things organised this week. But what is strange I am not bothered today at all I have far too much to do.
Big hugs to all
Alyson
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I just talked to Catherine for a few minutes on Skype....my first time with the WebCam! Need to do the same with the rest of you! What fun.
Alyson....my retired clients all tell me they don't know how they had time to work! I am sure you will be the same...especially with little Bea around to take your attention and heart.
They are calling for more snow here 4 to 8 inches tomorrow night. Come on now, haven't we had enough? How about you Phyl? Enough already.
Catherine is going to call me back later...looking forward to it.
Love you all!
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Evening all!
Twilah - I am so happy to see a post from you! Thank you so much for sharing this with us. Please don't ever feel that you need to protect us; well, speaking for me anyway. I totally "get" where you are coming from, but it's much more important to me to know really how you are doing. Catch a hug from me, and incase you forgot since the last time I told you, you and yours are in my thoughts and prayers. (((Twink)))
Melanie - Thanks so much! No, it's not really new, been this way for about a year. I drew it out when my hair finally got long enough (yes, it's much shorter in the back). My hairdresser and I laughed and talked about how it really wasn't in style anymore. Lo & behold, now it is! So, as much as I like it, I may be changing it again, just cuz I like being different.
We shall see! Alyson - Your get-a-way sounds great! I think that's why I was so sorry to see Christmas end. DH & I didn't get much in the way of vacation last year, so the 10 or so days off were much appreciated. Took the time to catch up with friends, family and some me time too. Ahhh. ☺ I'm sure it's different not getting ready for school, but look how much time you'll get to spend with little Bea!
Terry - We were posting at the same time! Skype is fun, isnt it! I dont get the chance to get on very often. I'll have to jump on one of these weekend days and see who's out there.
Well, big day today. I wont bore you with the details, but due to my non-existent immune system and a variety of other health issues, we finally started permanent dental work that's taken close to 9 months. Twelve more days and it's all done! Trust me, it's big news here!
Hugs and best wishes to everyone. See you soon!0 -
It is with a heavy heart that I tell those of you who used to post in the Circle & may not have heard, that we have lost Alaska Deb. Please keep her family in your thoughts and prayers.
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Thank you, Carynn... I did follow her story on Gina's... so sad...
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So sad to hear this, Carynn. Sigh.... Saying prayers for Deb's family.
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I just wanted to stop in and check on everyone. Thinking of you all.
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Stopping by to check on everyone. Some good news and some not so good. I really don't know Alaska Deb but I do recall seeing her posts on one of the threads I monitored long ago.
Twink - it was wonderful to read your post. I wouldn't want you to sugar-coat anything . Like others have said - I don't let the thoughts run rampant but I certainly do think about it with every little ache and pain.
Pat - wonderful news on the cancer issues. Hopefully you'll get rid of the lung issues quickly.
Terry - argh!!!!!!!!!!!!!!1 Snow seems to be daily now and a nor'eater coming up the coast Tuesday? I'm not so much frustrated with the snow but the ice and cold is driving me crazy! Went snowmobiling a couple weeks ago for the first time in 3 years and I remembered why I love it but I wish it could be warm everywhere else. Heading to Black Moshannan tomorrow for a poker run.
Alyson - I kinda do envy your retirement - I'd love to be able to spend some more time with the grandkids. I have another on the way for sometime in September. I will not wish my summer away tho.
Marsha - thinking of you!
Hey to Leah, Catherine, Carynn, Vegas, Sammie Kay! Hugs to all who need it!
Phyl
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Happy Friday! and TGIF!
3 weeks have flown by at work. Wow. Feels so good to be back in the groove, no matter how much I gripe about this weather. What a year for snow- set to break a lot of records.
I gave up my "face to face" support group. It felt like a good time to disband, as one woman is too ill to come, one woman died last week, and the other two are in active treatment. I am kind of the odd woman out, as most of the women are retired, have children in their late 30's and 40's, etc. None have worked in a while... So a lot of my issues weren't their issues. Now I can't make a 3 p.m. meeting given the work schedule/distance. So this group will be my "people". Hope you can handle it !
But you really have been the ones I come to, though I care for the women I met in the face to face group. And the death was hard. Don't underestimate that....For those of you getting your taxes ready, you might want to peek at the medical expenses publication of the IRS. http://www.irs.gov/pub/irs-pdf/p502.pdf. All the miles you drive for treatment, etc. are deductible. Don't leave any money on the table!
Much love, and a great weekend is wished for you all!
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Hey all, just popping in to say hello and to let you know I am fine. I have the posts sent directly to my email so have kept up daily with what is going on with everyone.
Twilah, thanks for the update. And no, NOT too much information. When you were first dx'd with mets I could not understand why you wouldn't come on and tell us how things were going more often....................
Alyson thank you so much for the green stone. It is beautiful and means alot to me.
I have done 11 of the 20 rads to both femurs and mid/lower back. Will be glad to get that daily trip over with. Continuing with the monthly zometa and the femara. Will have a rescan after 3 months. Onc said it takes that long to see if the Femara is working.
Hugs all around, Marsha
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Oops - forgot one thing for Carynn - GO STEELERS!
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Phyl! It is so nice to see you! A poker run sounds like soo much fun! Thanks so much for your good wishes. But I'm afraid that you didnt see the typo in your post. I know you meant to say Go CARDS!!
Leah - What a mixed week you've had. I'm sure that it was a tough decision to leave the other group and the work hours just kind of helped it to fall into place. On the work front tho - so happy to hear that you like it! My staff and I talk frequently about how important is it that they LIKE what they do.
Marsha - I'm so glad you posted. I've sure been thinking about you! I hope the side effects are kind. Are you still doing BNO? Catch a hug from me my friend.
A reporter in AK did a wonderful piece on AlaskaDeb. If you'd like to see it, the link is here: http://www.ktuu.com/ The video link is in the upper left hand corner of the page. You may need to scroll thru some other videos to get to hers.
Catherine - Have you been back to the french shop yet? It was pastries, right? You made it sound so good that it sounds like it's almost worth the trip to Denver for them!
Waving to Terry, Alyson, Twink, Vegas, Melanie and all. Wishing you a wonderful weekend.
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Go STEELERS! Wave the Terrible Towels!
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Very funny Terry. We all know I'm seriously outnumbered here.
Guess we'll know tomorrow for sure whether or not hell froze over.
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Carynn, I don't know about Hell freezing over, but the state of PA sure is....hope that big storm misses us!
The whole town is Black and Gold right now though (except for the ground, which is white!)
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Marsha, good to hear from you. Hope the Femara is kicking cancer's butt! And you are more than halfway through the rads - I think that calls for a cyberita.
Leah, sounds like the perfect time to give up the face to face group. And I am so happy to hear how much you are enjoying the new job. It makes you feel alive to be out in the world even if it is freakin' freezing.
We went up to Brian Head Utah this week for a few days and I skied for the first time since my bilateral two years ago. I was a bit nervous, especially about falling and possibly damaging The Rack Pack or my left arm which has a tad bit of lymphodema, but all was good and the snow was perfect. Came back to Vegas and lovely 68 degree weather. What a life - skiing one day and golf the next. Beats the heck out of chemo.
Carynn, you are not totally alone - GO CARDS!!!! Definitely will be watching and cheering along with you and getting ready to do a happy dance on all those pointy little Steeler heads at the end of the game!
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Crazy here too Terry. It's lots of fun. I'm actually a die-hard Raiders fan, but cheering the Cards this past week has been lots of fun. Besides, I'm not really cheating since the Cards are an NFC team.
Our whole town is in red. There's been basically no news reported this week. Five minutes of news, 25 minutes of sports. And wow, what a Cinderella story a win would be!
Really looking forward to tomorrow. Dh & I are getting with all of our hard core football friends and I'm sooo ready for a party!
Hope the storm misses you! Stay warm! (((hugs)))
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Vegas! How in the heck did I miss your post?? We must have been posting at the same time.
Yes indeed sking and golf sure does sound great! Just another day in paradise; we've got it made here in the desert! Go CARDS!!
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Yes indeed, Carynn, we must have been posting at the same time. Sorry Terry, but it is all red in our household too! Got my Cards shirt ironed and ready for the big game with friends who have season Cardinals tickets.
Forgot to say hi back to you, Phyl! (Got too involved in the game stuff!) Congrats on the new grandchild. I have another grand nephew or niece coming in September too and we are all so excited.
And just one more time - GO CARDS!!!!!
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In case anyone is unsure of which side I am on in the Super Bowl....
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Whoo Hoo Diann! Yes, we're ALL in Cards red today. Off to the big game!
GO CARDS!!!!
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Well, it was exciting, but the wrong team won.
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Exciting it was. But trust me, the entire state is just happy that they went! And, it wasnt a blow out, we definately gave the Steelers a run for their money.
Some of the officiating, especially in the 3rd quarter was questionable, but all and all a good game. For our PA girls, congrats! Watch out tho, looks like AZ could be a team to reckon with next year.
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