March 2011 chemo-lounge
Comments
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Everybody say an extra prayer tonight for me. PET scan tomorrow-don't know why I think this one is so important, I will be doing scans every 3 months for the rest of my life. I have only had a PET once, way back in the beginning. So no sugar or caffeine today or any exercise-lots of protein and water. Great excuse to not be raking my leaves!!
Remote hope for NED but would be very happy for stable. 3rd alternative doesn't bear thinking about.
Penny-YOU THE WOMAN!!! That is a heck of a big deal doing a climb like that in perfect weather-doing it in 102 deg heat is unbelievable. What some people do for fun???? I am going to look up Mt Augustus after I send this. Did you have to pack in your food for this trip? It sounds amazing except for the heat stroke.
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Lily: Saying a prayer for you for sure. When will you get the results? Please let us know ASAP! I am hoping for all clear!!!!
Penny: You have inspired me more than you know! That is amazing! When I don't want to run that extra mile this week I will think of you and "just do it"! I can't wait to see the photos!
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Lily, I can understand the anxiety. Anyone would feel the same way. I am saying extra prayers for you tonight. Good luck, I think you will get good news.
Penny, I was going to say the same thing as Maria, you are inspiring. It took a lot of courage to go on that trip without all your strength back. So glad you had a great time.
Maria, you're a hard one to keep up with too. I thought I was doing good because I am walking a few miles every day, but you're outdoing me by running them!
Everyone, hope you had a great weekend, and don't eat too much candy tomorrow. Happy Halloween!
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Lilylady, I'm putting The Waiting Is the Hardest Part by Tom Petty on the jukebox for you.
Oh baby don't it feel like heaven right now
Don't it feel like somethin' from a dream
Yeah I've never known nothing quite like this
Don't it feel like tonight might never be again
We know better than to try and pretend
Baby no one could have ever told me 'bout this
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
Well Yeah I might have chased a couple of women around
All it ever got me was down
Then there were those that made me feel good
But never as good as I feel right now
Baby you're the only one that's ever known how
To make me wanna live like I wanna live now
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
Don't let it kill you baby, don't let it get to you
Don't let 'em kill you baby, don't let 'em get to you
I'll be your breathin' heart, I'll be your cryin' fool
Don't let this go to far, don't let it get to you0 -
Penny that is awesome! So glad you feel well enough to do that.
Lily praying for NED for you!
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Lily - will pray hard that your PET gives you great results (I'm here chanting "NED, NED...". Hang tough!
Colodisney - seems so odd for Tami to be the cancerversary...
Penny - you inspire me. Glad it was a great trip and you're recovered!
Kay - great song selection!0 -
Lilylady - I'm saying a prayer for you tonight. I feel you will get a good report. You are right, the 3rd alternative is not to be thought of...because you will get a good report.
Pennycookson You go girl !!!! Sounds like you had a great trip sorry about the heat stroke.
Kay - Great song.
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Lily-sending all good energy and prayers your way.
Penny-sheesh....you are making us all look bad! I was thinking as I leaned over my desk tonight trying to reach something and ran into my non moveable tissue expanders, that if I tried to climb a mountain with these, I would probably puncture them!0 -
Hi All,
SuperSally, did I ever tell you that I had written an entire comedy routine about my ex and his belly dancer? LOL I am happy to be able to laugh at it because for the first year or so I was very hurt and angry. Since our split in 2007 my ex and his dancer have since been married, bought a house and have a year old baby boy so hopefully they are happy. My BF is two years older then me, I enjoy the fact that we are both aging, my ex doesn't have that luxury!
Silas, my new dog is shepherd, collie and lab cross. She was very neglected as a pup but is now healthy and happy, and yes...she gets me out for lots of walkies!
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Hi ladies,
It has been a while. I was in residence in Victoria BC for 3 weeks for my master's program. It has been incredibly intense since I started the program in Sept and the three weeks was total immersion. I keep wondering if this is the right thing to be doing since I have never felt I was much of an academic and this is a serious degree. Especially now, after chemo, I wonder if I have the brain power to do it. But I've been keeping up. I had to have a little talk with myself to remind me that I don't need straight A's; I just need to pass. No one will ever ask to see my transcript if I say I have the degree.
I made a decision to go out to residence without the bionic hair. I had enough hair to pass for a really, really short cut. What's funny is everyone assumed that I had chosen to have a really short cut. I even had someone comment yesterday that I should keep it this short because it makes me look younger. So how old did I look with my real hair?! It's to the point of feeling like cat fur. I can pull up a bit through my fingers. My plan is to see the hairdresser this month for her special, gentle hair colour to tone down the grey.
I came back from Res to more stress. My mother-in-law just found out that she has a 4cm tumour on her pancreas and several tumours around 1cm on her liver. We still need more details to know what it really means and what kind of treatment the drs recommend. It seems like the big question is: how much time does she have left?
It seems that so much has been happening on the list. I'll have to go back and run through all the posts to catch up.
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Pasmith - it's weird when you get compliments on your hair and people assume you are so brave having it so short. I usually just say thanks and shut up as it is only someone who doesn't know me at all to say that. It is really convenient, isn't it? I went red with my hair color, and so I really think people think it's my choice. Some lady (a very nice one actually) was quizzing me over the weekend about was it always this short, was it always curly, was it always thick. It was a tad awkward for me! I just kind of skirted the questions, she meant well, I just didn't feel like putting it out there. It's funny how things change after what we've been through re:getting A's or whatnot. I sometimes say to myelf, "hey, it's good enough, doesn't have to be perfect anyway", and sounds like you are on that philosophy too. So sorry to hear about your MIL. Praying that the results come back favorably.
Timerdog - I think that is a routine I'd love to hear or read
It was probably very therapeutic to write it and I'm sure it is very funny. I often think about people that cheat who end up together. Will they be surprised if one or the other cheats again? Will they get the devastation they put someone else through? Anyway, enjoy your puppy, it's hard and fun all at the same time!Kay - thanks for the awesome song, you always have a good tune for us.
Penny - can't wait to see pics! That sounds like an amazing trip, glad you are loving the new hair do. It is especially nice when it is 100+ degrees out, I thought. Hey, nothing like a little heat stroke is gonna stop you from getting to your goal, you are one tough cookie, just like all of us here!
Lilylady - I pray you are dancing with Ned. Please let us know the results of your PET scan.
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Girls, I just noticed we have 35,760 views-that makes up pretty darn popular. Now we aren't anywhere near where "hair hair hair" is or "you know you're a cancer patient" but our small group has generated interest to lots of people.
Had an echo yesterday and my heart muscle is as good as it was when i started. I will go get my scans results tomorrow. Bone scan today. Breast surgeon sucked out fluid for the last time yesterday-got a 6 month follow-up appt. I went 17 times total. I go for my Rads set-up on Tuesday. I will be so glad when this is over!
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Well girls I am 16 weeks pfc and I have a ct scan scheduled for Nov. 15th. I had asked my Dr to schedule a mri and a bone scan just for piece of mind and she did, but they called this week and told me that the ins will only cover the ct scan. What should I do? When I had my surgery the path report was NED and all my lymphnodes were neg? Am I over reacting? I see my surgeon for another follow up on th 8th and I am going to see what he suggests. Out of all my Dr.'s he is the best!
I feel really good, other than getting over chemo and rad side effects. No pain anywhere.
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I read up on you gals a lot more than I comment, so I'm not surprised at the number of reads we've had!
ksmatthews: my bs doesn't order any scans beyond mammograms and mri's. I never had a post-chemo scan of any kind. I think it's just personal practice. If you have another doc whose opinion you trust, maybe you should consider his suggestion. It's crazy having so many docs! I was asked yesterday for the name of my primary, and I didn't know what to say!
penny: good for you, getting out there and being so active. I admire you.
supersally: I do the same thing, just thank people for the hair comment and move on. I suspect they don't want to hear my whole history anyway!
pasmith: so sorry to hear about your mother-in-law. I hope they can find some good treatments for her.
lilylady: Praying for NED (or at least stable). Waiting for PET scan results was, hands down, the most stressful part of my journey, believe it or not. Still not sure why, but I think because I was still in a state of complete shock.
Have any of you considered dropping any doctors? I have a follow-up appt in Dec with my RO, and I just don't see the point of visiting when I am already following up with my MO at the end of November and having my mammo in January (with my BS) and am seeing my PS this month for my exchange surgery. They all do the manual exam, so I don't think I need to see the RO. What do you think? Besides, my RO left the practice, so I would be seeing a doc I've never met.
Exchange surgery Friday. I am not too nervous, yet. I just want to be past all of it.
Have a great week, ladies!
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Maxine-We are exchange sisters, but I am a wreck. This is my second set of expanders due to infection and I just keep going over all the "what ifs." I am going to pop an ambien tonight because I didn't sleep at all last night.
KS-my onc does not do monitoring either. Makes me crazy. I did have a cat scan of the pelvis and abdomen, but I had to go through the back door. I have a kidney stone they monitor and I am considering a hysterectomy, so my PCP agreed to order the ct scan so that I only had to have one xray to cover everything. All was clear. I have not told my onc. LOL.
I will have an mri next year at some point even if I have to pay for it just to check the implants,etc.
Well gonna take that ambien now. Hope it works!
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Ladies...thought I'd post to say hi. I read all of your posts each day, as I am very interested in keeping up with each of you. I haven't posted much, because I am in that limbo land where I am finished with surgeries and treatment, and not much going on with me right now. I have started horseback riding a lot more, and my body is rebelling, with a lot of soreness in my arms and shoulders. Penny, you amaze me and are and inspiration.I wish I had your energy.
ksmatthews, my MO won't be ordering any scans, unless I have some definite symptoms. I had all the CTs. MRIs, and bone scans before chemo. Funny how we have different protocols. I have dense breasts, so am hoping to get more than just a mammogram every 6 months. I don't have too much confidence in them for myself at this point. We will see.
MaxineO, I am considering dropping my RO too. I didn't have any real skin problems with radiation. I have a follow up with her next week, then I'll decide if it's worth my time to continue seeing her. She is just 4 miles from my house. I wish all my doctors were this close.
I am 20 weeks pfc, and my big thing now is the hair which is still quite short, and salt and pepper. To dye, or not to dye? That is the question. I can't get used to the grey, but I think back to how often I had to touch it up, and am thinking I might just keep it this way. My friends will be shocked. Still haven't gone out without the caps or head wraps, be DH says it's time. I just wish it had some kind of "style", know what I mean?
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Well, I have my Pet results and have talked to the oncologist. I got the report today and was sitting with the laptop trying to figure out what some of the terms meant when he called. When he asked what I was doing I told him I was studying the internet so I could give him a quiz on how to interpret a PET.
He asked what my impression was and I told him I thought it looked good. He told me I was wrong-he thought it looked great. There is some uptake still on various nodes but it is below the level where they consider it a tumor. The liver tumor didn't show at all. Most of what lit up are nodes in and around my throat and lungs. Also still some things showing up in the bottom of my lungs but nothing at a level to raise concern.
So my diagnosis is not NED but a little better than STABLE. Next scan will be in early Feb. In the meanwhile I will be starting my Rads and continuing on with Herceptin. If I don't miss a day I will finsih my Rads on Dec 23. Merry Christmas!!
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Great news, lilylady. I've been thinking about you lot, and so glad your PET results are back with such good results. Sounds like you are on a good path, as are we all. We have come such a long way this year.
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Wonderful news lilylady - so pleased for you.
Jules , I don't get any scan from now either - just a quick medical - are you ok, poke around my axilla and thats it. What is the point given they could not feel the orginal tumour. I don't see the RO for a year.
The hair thing is weird. I was presenting at a local conference yesterday, I have presented there every year for the past 15 years. I had people I have worked with on and off all that time, but who did not know about the C, come up to a person next to me at our exhibition stand and say "is Penny not here this year". Do I really look that different!
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Lily I am knee deep in boxes as we are moving today but I logged on to see if you posted. I am glad the results were favorable. That is great news! I think about you all every day. I have not posted much because there is not much going on but moving. I have nipple surgery on Dec 9th. I am still feeling ok but get a little tired. I think the tamoxifen is to blame. I started lexapro this week. I needed something to help me chill out a bit. I still have some anxiety over bc. I am still working out daily...I ran 6 miles yesterday.
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Great news lilylady. I am happy to hear better than stable!
penny: same thing happened to me. I ran into a few people at a conference who clearly didn't recognize me. I commented to a friend that I'd better make sure my nametag was visible.
jules: good to hear from you. I think I will drop the RO. That is my closest doc, but too many to keep track of.
fluffqueen: good luck on the exchange tomorrow! I am feeling a bit nervous, but I know I will be thankful to have it all done. Not looking forward to the fasting and going without coffee in the morning! Update here when you feel up to it.
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Just checking in....
Lily-glad to hear your news!
Maxine-I am preparing to take an atavan. My surgery is at 11:00. I am cleaning my bedroom like a crazy woman right now just to take my mind off things!
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Good luck Fluff! I hope all goes well!
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I have a ct scan scheduled to follow up on a spot on my lung and liver, that they saw b4 chemo. They want to be sure it isn't anything at all. I dont think it is and neither do my dr's just want to be sure. I feel a little better knowing that they usually dont redo scans, but at the same time I want to be sure the FC is gone! I can feel a small bump on my incision line, my RO said it is scar tissue. i see my BS on the 8th so I am going to see if he thinks the same thing. Last night and this morning have been having pain in my bad bood! I guess that is part of it?
So glad you girls are doing good.
Jules I have colored 2 times and go topless almost all the time. Just go for it!
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First of all thank you to all the lounge ladies for your good wishes. What a roller coaster ride this year has been for all of us. I have had a great week and so happy to share it all with you.
The rest of the cancer week news:
Bone scan-CLEAR
Brain scan-CLEAR
Echo-no changes since baseline test before chemo
Hair-TOO DAMNED SLOW!!!
I have a call in to the BS because the scan picked up surgical clips (????) in the right axilla area. I had no nodes removed but my incisions go all the way thru my armpits around to the back. I tried to open the disc from the scan but couldn;t get the files to open. Pretty sure there shouldn;t be anything in there. Does clips mean staples or clamps?? Is this why i have been to 17 follow up visits to have fluid drained?? Can I use this to get out of paying 17 co-pays they are trying to charge me?? WhenO gofor Rsd set-up tuesday it will probably show on the x-rays-hoping to see what they are then.
Penny-I like your picture. I think you look smashing-even if your hair is different your smile hasn't changed-can;t imagine why they couldn;t recognize you.
KSmatthews. They tell me we all have strange stuff in out organs that we would never know about otherwise. Hoping that's what they find with you
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Great news Lilylady! And the rads clear up anything microscopic that may be there. My onc told me after my pathology report where there were no nodes (even though I had a lever II node dissection, my lymphedema thanks the BS for that!) that any nodes that are there, even if there is any cancer, will be obliterated by rads. I'm not at all satisfied with that response, but I have to just move on. Nothing showed on MRI post chemo, so I just have to go with that and rads.
KSMatthews, it is refreshing to see someone not getting pretrified over scans like I do. I am sure yours are going to show exactly what you think. You rock!
Guess what guys? I had lunch with Silia from the thread yesterday. She is getting her rads about 2 miles or so from where I am getting mine and we met for lunch. She is a great person just like she seems on the thread. I am so happy I got to meet her. And she even treated me to lunch. But we both agreed, we will do this again, and next one is on me.
Have a great weekend everyone.
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lillylady yeah congrats! You rock!
Also my onc had told me when i was first diagnosed and they saw those small spots, one on my liver, one on my lung, and one on my kidney, that if she pulled 100 people off the streets who seem healthy that 98% of them would most likely have spots too. So I am trusting her, did the follow up on the kidney at the beginning and they said it was just a cyst.
Last night and today I have been having sharp pain in my bad boob?? Is this normal?
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Kay - that's awesome that you met Silia! I am sure it was fun! Oh how I wish we were all closer to each other.
Lily: Amazing news! That made my day!!! SO happy for you.
KS Matthews: It's hard to have faith in things even when the odds are with you. I get it! I feel the same way.
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Lily-congrats
Ks-i have a kidney stone monitored. Its been there for years. Ct scan that I talked him into this time showed a one cm cyst in kidney. My urologist said the same thing as yours. I also felt a small lump at the start of my incision. Freaked out. At exchange today, he said it was scar tissue so he did a capsular modification to fix it.
Ok...enought waiting...I GOT THE TWINS TODAY....WAHOO! He put in 425s because try as he might he couldnt wedge in the 450s. Lol. Gonna tak a pain pill in 30 minutes and take a nap but thought i would catch up first!0 -
I haven't been keeping up with everything but just had fun reading through our thread.
lilylady - ROCK ON! So glad for your great news. You deserve this. Glad you're jumping on the rads train and will finish up in 2011!!! I'm thinking clips are clips - and I would definitely be wanting my co-pays back at the very least.
pasmith - re: your schooling, as long as you want to be doing it, I encourage you to hang in there. 90% is just showing up. I got my master's degree as a weekend (Fri thru Sun) program once a month with a few full weeks thrown in. There were many months when I showed up not being fully prepared but I buckled down on my weekend there and got through it. Best of luck to you.
Maxine - I think you're making a good decision to drop the RO...
Jules - So great to hear from you. I'm 13 weeks pfc and also wondering when I can dye. Since the top is quite thin, I know that dark hair right now would accentuate that - ugh.
mdg - I know you'll kick through those boxes in no time flat. Impressed with your 6 miles (you always impress me).
fluffqueen -- Twins - you made me laugh out loud! Hearty congrats to you.
ksmatthews - It's good you're seeing the bs next week and getting the CT scan - you'll be thrilled when you officially hear there's nothing to worry about.
Kay - I really enjoyed our get together and having face-to-face time. You're also as wonderful in person as on this board! I realized on my drive home that we were a disgrace to our chemo-lounge buddies -- we both drank water with our lunch instead of something stronger and more colorful -- well, maybe next time.
Penny - almost forgot. Love the new photo!
Sending everyone hugs and best wishes for a great weekend.
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