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Anyone starting Chemo in Feb?
Comments
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Hey gals! I have been away for five days in Utah with limited Internet access so I am just catching up!
Leah, I hope you are feeling better today. What was the liver zapping like? And hopefully this job will come thru for you. I know what you mean about working. I was definitely a workaholic before, but now..... it just doesn't seem so important. The hard part is everyone still EXPECTS me to be a workaholic. And so I feel like I am letting people down. But darn it, I just don't want to do all that anymore!!
Twink, sounds like you are doing amazingly well except for the joint pains. I can relate just a bit, the Femara is really getting to me but I am trying to stay with it. 4 years and 9 months to go. Hang in there and hopefully thee won't be any more side effects. We do expect to hear the updates however. As Marsha said, we are there for you!
Phyl, the pet hair obsession has me a little worried. You must definitely be experiencing a very rare chemo side effect. We may have to do an intervention for you!
Teri, my port incision is throbbing painfully just reading what you went thru! I would run like a scared rabbit if I saw that nurse coming anywhere near me after all that.
Jan, you look amazing and beautiful with the curly dark hair and you have so much of it! I wish I could say the same for myself, curls evidently just don't suit me. My hair was stick straight before and I am so hoping it will calm down again very soon! Mine is more kinky and fuzzy and goes every which way.
Hilary, congrats on your graduation to topless. It must be an immense feeling of freedom. Right now I am despairing of ever getting to that stage with the way mine looks.
And beware girls! I just lost most of my eyelashes and brows again! It seems that your lashes and brows grow in two to three months cycles. With chemo they all started growing at once instead of being staggered like they were before. Over time I guess they eventually become staggered again, but you can noticeably lose them several times before this happens.
Marsha, what great news about your surgery! I know you have to be so excited. And later on you can always do recon when it is affordable. My girlfriend waited nine years to have hers and she looks wonderful. But as beautiful as you are, you will look fabulous no matter what.0 -
Melanie, are you going to be in Orlando the end of Sept??? HAHA you would have had to try and catch me there cause it is a DAY SURGERY thank God!
Jan, we must have been posting at the same time when I added myself to the list! I would never leave out Wild Jan.
Carynn, gonna let you handle the secret pal stuff. You are so much more organized than me!
Vegas, welcome home hope you had a good trip! You will be going topless before you know it!
Marsha0 -
LOL I figured that when I looked at the times of our posting MARSHA!
I had some good news today...my insurance has paid for the genetic testing! Now I wait to hear from my BS about the results. My daughter and cousins are waiting too to see if they need to be more aggresive or not about finding BC. I am a little nervous...because if I have it I have to have a double masectomy.0 -
Melanie:
Longer than I thought it would be. I stopped taking pain pills yesterday afternoon, and paid for it dearly. cried most of the night. But now keeping up with them (percocet) and feeling much better. Probably 5 days.0 -
Hi, Leah... sorry to read you are in so much pain. Did they "warned" you that would be the case? Did they explain why? Wishing to forget about all this as soon as possible...
Hugs,
CatherineH0 -
Leah -- Take those pain pills ... but, don't forget about their nasty little (or should I say binding) side effect!
Vegas -- I hear you and Leah on not wanting to be a work-aholic. These 8 months off have been a real eye opener for me. It's quite difficult getting my brain wrapped around work again! As for my hair, I find it looks best if I spike it with some hair wax. The spikes make the style look more deliberate. You have me worried about the eyelash/eyebrow loss. I had forgotten about that. When I was wearing my wig, I tried to cover my brow ridge with the wig's bangs. I can't do that anymore! How long before the lashes/brows start growing back?
Caryn -- Should we be sending you a pm with our real and e-mail addresses? If your dh uses e-mail to contact us, you should be able to stay in suspense about your secret pal. I think that $5 sounds about right!
Marsha -- Is your surgery really only out-patient? Will they do an SNB as well? How far do you live from Orlando?
Jan -- Great news (finally) on the insurance front ... it should take about two to three weeks to get results.
Catherine -- What's for dinner tonight? I've gotten so lazy about cooking. All I want to eat are salads, which is not what ds or dh like to eat! So, we went out for dinner tonight!
Hugs to all,
Hillary0 -
Hillary,
Yes day surgery. I asked if it were possible for me to. Yes, SNB at 11 am and then surgery at 1 pm. I live 75 miles from Orlando but my friend Tina lives there so can stay with her that night if need be. Already have friends lining up to go with me and keep Jim company. I've had about 5 different people offer to go! My friends sure love a road trip. hahaha. I gotta tell you, I have a new lease on life just knowing that the uniboob will soon be a thing of the past. LOL
Leah, dang, don't let that pain get ahead of you. Did they warn you it would be painful? The procedure must be a little more invasive than I had imagined. Well hang in there girlfriend, soon this will all be a thing of the past for you too and you will be on your European vacation. I think about you aot.
Carynn, let us know when your DH is ready for all our info to come rolling in. Maybe he should come on here with his own id like "BarbiesHunk" or something and we can PM him our info LOLOLOL
Phyl, where you been?
Jan got my fingers crossed for you!
Catherine, when you have a secret pal it is someone you send little notes, gifts, e-cards, etc to without them knowing exactly who you are but knowing it is someone who cares for you. Birthday, anniversary, special dates, favorite things etc are given to you for that person so you can surprise them by brighting their day. Just silly fun but boy does it put a smile on your face when you get a card or little gifty poo in the mail. You'll love it.
Hugs all around this Friday morning! Marsha
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So...along with our addresses, we would need to include some info....birthdate, hobbies, favorite color, anniversary, etc. I like the $5 idea too.
Last reg rad today....5 boosts next week. Then the Femara.
Do you think dogs can smell or sense the radiation? My Princess has been quite strange around me the last few weeks. In the morning she usually would come in my room while I was getting ready for work and just lay down. Now she is coming in the bathroom and whining and whining in my room. She only does this around me. I hope it is radiation she senses and not cancer. I have read some stories about dogs sensing illness.
Leah...hope you are much better today. Take your meds and here is another "gentle" hug (((Leah)))
Well...got to get to rads...simulation for boosts is today.
Talk to you all later.0 -
Good morning, dear friends...
Marsha, love the pic of the glass, and thanks for the info... still, I am trying to understand: we have to pick only one person or we can surprise several? Of course the postal stamp indicating the town will not be so secret very long... or do we send things to the "coordinator" who dispatches??
Hillary, yesterday was "leftovers" day... I had roasted a chicken the night before (with tarragon, thyme and garlic, and a dash of curry) and simply warmed up the white meat over a couscous that I fixed with sauteed onion in a little bit of olive oil, some ground cumin, curry, raisins... cooks in 5 minutes, so this is a very easy dish...
Jan, I LOVE your "positive proof of global warming"... I want to send that to a few friends... it's excellent...
Twink, great "gardening" story on your blog... hope you are adjusting to your back-to-work routine and that you feel good.
Thinking of you Leah, hope the pain is at bay and that you do not forget your colace or senokot... as Hillary reminded kindly...
To all of you still undergoing rads... wishing you a decent day and not too much fatigue.
Brain MRI for me this afternoon (chemobrain study), not that I am looking forward to this noisy affair...
My DH is going to have one on Monday morning (he has suffered for years of poor balance, tinnitus, hearing loss, and wants to get to the bottom of it because it is not getting any better, especially walking around while teaching: Meniere's syndrome or cerebellum problems???) Keeping our fingers crossed for nothing too serious. But I am glad he eventually was willing to have a real checkup (found an internist he likes, a lady, got blood drawn for a complete panel and more, will see a neurologist after the MRI...) he never had cholesterol or high sugar, but last time he checked was 5 years ago... and he will turn 66 in October (which I cannot believe...). The good thing is that I feel pretty energetic and in good spirits and know the 2 of us can go through almost any of the "niceties" life has in store for us in our "golden years"... again, being back in the States and living in a city like Denver takes a lot of the anxiety away because you feel you have excellent medical specialists available, close by.
Well, time to move (ack!) I am going to empty the rain water I gathered in big containers to water the trees and bushes before mosquitoes breed in it...
With this beautiful rain we had (thunderstorm), hope the grass seeds will sprout soon, before the mice eat them all (we could see a couple running around yesterday) and before Toby eats all the compost bits (must taste the exquisite manure flavor he enjoys so much from his early rural Britanny days...)
Big hugs to all, Carynn, Vegas, Terry, Karen, SammieKay, Alyson, Tink, Melanie, Teresa+Scott (hello there, what's up?)... et al (probably forgot a few names...)
CatherineH0 -
Went back to the onc today. First trip back in awhile. It went well. He spent almost an hour with me and I felt like he was in no hurry. Had hormone levels drawn today since it is unclear if I am in menopause or not. I had chemopause and hot flashes during chemo but it all stopped with the chemo. I had a hysterectomy so hard to tell. Based on the results I will then start on Arimidex. But I have had a horrible feeling like I have to pee ALL the time. It just started about two weeks ago. I thought it could be the cytoxan but he thinks it is due to low estrogen. If this is menopause I was rather enjoying no hot flashes! but the peeing thing is a pain!! As far as follow-up he said every three months with mammograms and a few MRIs
Got the call from the genetics lab today and the insurance will cover 100% Thank goodness. They said I will have the results in two weeks.
Onc said I could have my port out next week. But I am wondering if I should wait until the genetics tests come back. If I end up with surgery again why not keep it??
Leah, take the pain medication!!!!! Don't be afraid of them. Just be sure as Hillary says to avoid stoppages on the lower end.
Terry, good luck with the end of rads. My skin looks better everyday. you will heal so fast when they stop zapping you.
Marsha-I will take my margarita without salt please. CHEERS!
Marsha-when is your surgery again??
I feel like I will never go topless. I still have so little hair. Still just that dirty head look.
BTW remember when I asked about excess hair on the face. OMG I tried waxing. If you could have seen the look on my face the first time I ripped that paper/wax off my face. That hurts!!!! now I have just one strip on my left cheek that has been waxed. No one has said anything but I am sure it is noticeable. But I sure won't be repeating that again!! I have a whole new respect for woman who can do that.
Catherine-you make me hungry!! How are the flowers doing? When does fall start there?
Hey we have been missing Scott and teresa??
hope Tink and the new baby girl are good
hugs to all,
Karen0 -
Karen, a friend told me Sally Hansen facial hair remover. NOT a wax but a lotion you put on (must be kinda like Nair but for the face) Surgery is Oct 1! hugs, Marsha
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Hi everyone
Have been hiding away for a few days feeling really awful. As my mother used to say I am a real grizzle guts and am feeling sorry for myself. Despite Rads finishing and thinking that's it now lets get on with living, I am in so much pain. I have three large patches of burns on my chest and under my arm that have broken out, they are raw, they bleed and put out large amounts of nasty stuff. Sorry to moan but its almost too much. Sleeping is a real problem and I can hardly move my arm without great pain across my chest. It is so good to be able to tell someone about it cause when people ask how I am I smile and say fine just a bit sore and burnt and leave it at that.
One bright spot in all this is the wonderful District Nurses that come and dress and check my burns every second day. They are wonderful.
I was going to have my port out on Monday but that has had to be postponed until September. Thank goodness we have postponed our trip as I could never have gone away like this.
Leah you need a big hug, take that pain medicine as much as you need it. (((((((Leah)))))))
Marsha I am pleased you have a date for your surgery.
Add me to the secret pal list I presume its the similar to what we do here. Just give me all the instructions.
1. Carynn
2. Twilah
3. Catherine (although I do not have the faintest idea of how it works... I trust you to explain...)
4. Sammie Kay (I am game for anything.)
5. Terry
6. Marsha
7. Hillary
8. Leah
9. Karen
10. Jan
11. Melanie
12. Alyson
Have been going topless so that is positive.
I have to go and find the paint, at least the living room is coming on slowly, painting should be done early next week then it will be papered - wall paper is much more forgiving in old houses.
Hope I feel better tomorrow as it is our 35th wedding anniversary.
love to all
Alyson0 -
Oh, Alyson, how sorry to read about what you are going through and the way you feel. I am one of the few that did not go through rads, but I am sending all my sympathy, nevertheless, wishing you to recover soon to enjoy the upcoming spring... Take care and do not despair... we are here for you when you feel like confiding... I hope you are not the one painting, since your arm should probably be at rest... Do you take Ativan to sleep better?
Let us know soon how those bad burns are going...
Sending positive thoughts and cyber hugs your way,
CatherineH0 -
Happy Anniversary Alyson! Hope you are feeling better for your celebration. I too have some blistering under my arrm and under the breast. Doesn't sound as bad as yours though. The things we have had to go through!
Catherine...you should be a food editor. You make the simplest dishes sound mouthwatering!
Got my markings today for my boosts...guess I can wash the big blue square off of my chest now and just leave the smaller purple square over my nipple! I feel like someone's road map.
Marsha, October 1st will be here before we know it. So glad you found a surgeon and have a date. What a relief that must be for you.
It was cold and dreary and rainy here all week and now since yesterday it has turned...hot and muggy! Yuck. I like about 70 and breezy with low humidity. The heat just make the hot flashes worse.
I spoke with my Indian friend whose mother is here in the US being treated for breast cancer. She has had 4 AC and had 1 Taxol. At age 73, she is suffering all the side effects...nausea, mouth sores, bone pain etc...you know the routine. She doesn't speak English and is very homesick. We are trying to keep her spirits up. Sending her cards etc. Even though she is not an FCCer, please keep her in your thoughts.
Well...heading off to an early bedtime. My week at work has worn me out.0 -
ALYSON AND HUBBY!!!!!!!!!!!
BTW, when the rads start healing, they heal FAST! Love Marsha
Terry, have your friends mom in my thoughts and prayers.0 -
Yay KAREN, how cool is that? The both of us got our insurances to pay for the genetic testing in the same week!
ALYSON> ouch it sounds like your rad burns are pretty severe! Happy Anniversary, you have 4 years more than me!
MARSHA>the photo exceeded bandwidth so can't see it.
TERRY>prayers for your Indian friend's mother, Chemo SUCKS!
CATHERINE>your food preps always sound so delicious and it makes me hungry LOL!
LEAH>hope you are feeling much better.0 -
Congrats to both... 35 years, this is not trivial... wishing you many, many, many more...
Hugs,
CatherineH0 -
Good morning Ladies!
Well, it looks like we have a nice round number to start our game; so lets get started! I have randomly assigned everyone their Secret Pal. PM me your email address, and snail mail address, and any other info youd like to tell your Secret Pal (Birthdays, likes, dislikes, etc) & Ill PM your info to your Secret Pal. Once I hear from you, Ill send your info to your SP.
Its up to you as to what you send your SP, e-cards, real cards, small gifts ($5.00 or less). To help hide your identity, you can coordinate with each other or another friend. For example, you could arrange for someone else to send something from their address so that the postmark wouldnt give you away. You can also open a free hotmail, or yahoo mail account under the name Secret Pal. Remember, your real email address will identify you. And dont feel bad if you somehow let the cat out of the bag, or if your Pal figures out who you are. As Marsha can attest, others who have played the game ended up renaming it the Not so Secret Pal game.
I was thinking wed play thru the end of September. If we want to start again, we can reassign new Secret Pals at that time.
Let me know if you have any questions. Let the fun begin!
Carynn0 -
Haven't had time to read or post - but please add me to the list. Will catch up after Thursday. Hugs to all. Leah - hope you're well.
1. Carynn
2. Twilah
3. Catherine (although I do not have the faintest idea of how it works... I trust you to explain...)
4. Sammie Kay (I am game for anything.)
5. Terry
6. Marsha
7. Hillary
8. Leah
9. Karen
10. Jan
11. Melanie
12. Alyson
13. Phyl0 -
Gotcha Phyl!
If anyone else see's this a little later and wants to play, just let me know, we'll add you to the list!
Carynn0 -
WARNING: LOTS OF WHINING AHEAD!
Day 5 after the RFA, and I am miserable. Where to start? I am sore, can't take a breath, have a huge shiner due to the fact that I passed out and hit the floor with glasses on. Had to go back down to Boston on Friday, where they assured me that there was no bleeding or untoward activity going on due to a series of emergency CT scans. Their hypothesis is tince my "tumor" was so close to the surface, there is intense aggravation and inflammation where I can feel it- not as if it was deep inside the liver. I have taken about 12 percocets- exceeded lifetime total- and still don't feel that great. I am supposed to go to a one week gig tomorrow, and it is very iffy at this point.
When I am more philosophical, I feel that I came in at the low end of recovery for all my procedures, and maybe that made me a bit cocky. I assumed I would have an easier time of it than I have had. People at the hospital have been great, but they seem to think it will take as long as it will take. I get a little testy with this many days of laying around. 96 hours of HGTV I think at this point!
DO you think this is another test of PATIENCE???
Happy Anniversary to Alyson and all the other significant events I missed this week. I think I even saw a surgery date for Marsha in passing... Thank God!
Looking forward to the secret pals too!
Much love. (ouch)0 -
Oh Leah, I am so, so sorry to hear that you are still in pain. I guess they left that part out of the documentary we saw...
I was absent the day they handed out patience, so I'm no help there! I wish I had some profound words of wisdom for you, but all I can say is to keep taking the percosets, and know that everyone is sending lots of hugs and good wishes.
Wishing you a speedy recovery and that the pain subsides SOON!
Love,
Carynn0 -
Dear ((((((Leah))))), even with all you are going through you manage to make me smile with your great humor... like the "lifetime total"... Is there anything visible on your skin over your liver?? Was there bleeding involved??? Do you know why you passed out?? Did you break your glasses? I wish we could be with you to "nurse" you back to your old self... did you try Mozart? I DO believe it is a balm for body and soul... (also Samuel Barber, Agnus Dei)
Do you need to follow a special diet? Tell us more about you... this is not whining, it is sharing information...
Wishing you a gentle Sunday... Big hugs,
CatherineH0 -
No, no special diet. only thing that you can see on the outside is a 1/4 inch incision, which seems completely healed. Not sure why I fainted, except maybe not enough nutrition (nothing ever tastes good after sedation, and I tend to do the queasies by avoiding all food). Only being able to sleep on my left side has brought its own series of collateral aches and pains, though I did find an article that talked about radiating shoulder pain, etc. which could be a side effect.
I DID watch a video about traveling to Italy, and that music seemed to transport me.. right to sleep!
So all is ok for now. Except I want to be back to normal! Waahhh...0 -
Leah -- {{{{Hugs}}}}} and whine all you want!
Alyson -- A belated happy anniversary -- I hope that you were able to enjoy it!
Carynn - The way you have the secret pal thing set up, you don't get to play! I thought that your dh would be assigning secret pals? Has he opted out? We want you to play too!! Anyways, I will post you my info ...
Hugs,
Hillary0 -
Huge hugs to Leah ((((((((((Leah)))))))
Don't forget all the non-pharmacologic (non-drug) things you can do for pain.
massage-How about a foot massage!!! With some nice massage oils. have you ever had a cranial massage-ohhh that's nice. When my DD had major surgery her favorite thing for pain was a head massage by my DS (she a lawyer by day and a cert massage therapist on the side)
distraction-Like your program on Italy
Music-Follow Catherine's example
Guided imagery-Lots of CDs out there
Pet therapy-pet a dog or cat or both
aromatherapy-how about a little lavender on a cotton ball tucked inside your pillow. Or a few drops in a bath. Can't take a bath yet, try a foot soak, Lots of other oils out there for sleep...
Reflexology-know anyone who can help. My DS visited after my chemo and did this for nausea. I was a skeptic but it worked.
How about one of those side lying pillows for pg woman
Breathing exercises to relax. hey a wise woman told me to BREATHE when I was in a panic. I think that was you!!
Pain medication isn't bad when used right. Try not to worry about how many pills you are taking but how they are helping you heal. If you are holding back on them is it because they worry you. I have had patients tell me that they think OK I am better I am going to stop taking the pills. But they haven't healed enough yet. Or maybe your mad. I am mad sometimes. Walked out of the radiation the last two weeks without seeing the rad dr. on Weds. I was just pissed off at being there. You will heal and be back to normal. just give your body some time and Oh yeah, breathe!!! Love ya Leah Karen0 -
Leah, dang, hang in there girl. I think you hit the nail on the head. You have done so well leading this pack into the land of SE and you really handled things well. This is just totally unexpected after all you have been thru. Rest up girl, your body is obviously in need of it and a little pampering. Karen is right and had lots of great ideas. Also about the mad part. I am no realizing just how pissed off I have grown to be over all the suppose medical profession. When I think back to all the times I really relied on you guys or Dr. Google for advice, it makes me feel like I was just a cookie cutter patient.
((((((((((((((LEAH)))))))))))))))))) Love Marsha0 -
Hope you are feeling better Leah (((((( Leah))))))) you need lots of gentle hugs. Rest up and take all the meds you can so that you don't have any pain.
Had a lovely day yesterday. Stayed in bed whilst DH and sister went to Church. After lunch planted the lovely Daphne bush that my sister bought for us, then watched the others working. DH was sanding down the skirting boards. Then we went out for dinner at an Italian restaurant. DD1 had to do a lot of the ordering as she has some Italian and the waiters don't have wonderful English. Had a lovely evening but was tired when we got home. It was so great to see Erin's Chris being as silly as the rest, I do feel as though we have gained another son.
The burns look a little better this morning thank goodness, that is except the one running up my collar bone. I must get in the shower in a minute and get them sorted out for the day.
Hope you all have had a restful weekend
Alyson0 -
Wow! I heard from quite a few of you already! Very cool if I can get almost everyone assigned today!
Aww Hillary, you figured me out! No, DH didnt back out. I got to thinking that if someone didn't see the board this week and wanted to play, I'd hold myself out incase we ended up with an odd number. If more than a few sign up, say by Tuesday, then DH will mix me in with the new comers and email the info to the "new" girls. I honestly & truly dont mind. As I mentioned, I bought a new computer with a different "flavor" operating system. So having this spreadsheet to do 1) gives me a chance to play with it, 2) Gets me used to navigation (which is a bit different). So, it's all good.
Now, about the rest of you, anyone else want to join in the Secret Pal game?
Carynn0 -
I'm sitting here thinking about you. I hope you're feeling some relief. You know, if warm thoughts could heal you, make you feel better...you'd be feeling like a million bucks!
Warm hugs.
Twilah0
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