March 2011 chemo-lounge
Comments
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Wrote a long posting last night, lost it somehow (user error!), and abandoned the undertaking in disgust and exhaustion!
DivineMrs.M - So sorry you have to contend with another surgery but you'll plow through -- that's what we do, thank God! As someone else wrote, the surgery will be well worth it!! Hang tough.
Have a thumbnail hanging on by a thread - thought it would come off yesterday but not yet. Eyes now very dry, rash showing up on arms but thank goodness it's not itchy (I know what a struggle you continue to have with that, Maria). Red face today which seems to happen sometimes with Taxotere... Have the beginnings of a Friar Tuck 'do but no other hair appearing yet.
Feel like my PFC question started us all on a cursing jag - lol!! Kay - you continue your streak with Pink's song, which I LOVE.
Stilts - Agree that hearing others experiencing and knowing they're surviving is reassuring. I'll deal with rads in the Fall post surg.
Maxine, re: chemo pre or post, they assume my nodes were positive based on enlargement and I think that combined with the combined sizes of my two lumps, made them want the chemo first. Understand they're 8 years into a 10 year study for neoadjuvant approach and my onc says that many will wait until the study is completed then final report published before it would be considered as standard operating procedure. Who knows?! Sometimes I think that it would have been better to get the known cancer cut out ASAP but I think they thought killing extraneous, potentially traveling cancer cells was the priority in my case...
Penny and Maxine, what are you each presenting on (if you are comfortable sharing)?
lilylady, glad your date is FIRM now! Re: all the pre-surg testing, we've scheduled vaca the day after my pre-surg consult. Figure I can schedule tests but won't get in right away anyway. All I know for sure is that I won't let anything cut my vaca short -- I deserve this!!!
Happy, happy weekend all.
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morning ladies,its a beautiful day here in southern alberta going to head outside soon and soak up some of that vit D. have to go to a 50th birthday party later on today not sure if i should shake off the wig for it lol i really thought i would wear that thing religiously but its just too darn hot and itchy it might be more comfy now that i have fuzz covering my whole head mine is a mix of dark and white very interesting hmmm . eyebrows and eyelashes i lost about half for both not sure if anymore will be coming out now as i am 15 days PFC now hope not but as i have learned no point in worrying about it as i have no control over it. my body still aches like i have been working out but everyday a bit stronger. love that pink song i sing at the top of my lungs when it comes on the radio lol feels great to be singing the swear words good release lol.im sorry to hear your margins werent clean mrs M that just plain ol sucks. I hated getting that news.should be starting rads in a couple of weeks. its cold in the room here too and had one nipple pointing straight down and one straight up lol not a pretty sight.
hope you all have a great weekend
hugs kymn
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Silia - I reckon your vacation is as important a form of treatment as anything - don't let them mess it up. Interesting about the friar tuck, I have a bit of fuzz on the sides of my head but none on the top - bit worrying!.
Re the presentation - sadly I am an IT geek. The presentation is on designing a technical arhitecture for Oracle JDeveloper - yes I know WTF!. Doing the presentations is how I have got to travel to the U.S. previously though. I get the presentations out of the way and then get to spend some time with a bunch of friends over there.
Kymn - have a great time at the party, I also sing very loud - find it helps my spirits (if not the neighbours).
For rads - I am using sorbolene during the day and emu oil at night. (very slippery going to bed, but hey whatever might work). My sister the nurse recommends Radiaderm but I can't seem to get it in Aus. Neck is slightly pink after 2 weeks but so far OK.
My Onc wants me to lose heaps of weight - down 18Lb since diagnosis (although I guess 4Lb was boob - what does a boob weigh I wonder?) Now losing steadily at 2Lb a week. I am not being too severe while on the RADS but trying to eat healthily and exercise alot. I am SO SICK of beans, brocoli and fish - it had better be doing me some good!
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Ladies, I have been reading all week, but via my "smartphone", so not easy to reply. I have finished 8 of 33 rads, driving everyday, so far. My DD#2 turned 21 on Wed, and today was my 28th wedding anniversary so it's been busy. No SE's from the rads (yet) which is a welcome change, although i am expecting some color changes probably this week.
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I'm envious of all of you who have already started rads. You are that much closer to the finish of treatment. I have my first meeting with the RO on July 26. My breast surgeon said I might need as much as 50 treatments including boosts. WTF???surely that's just wrong. I've never heard of anyone having that many. I guess I'll find out on the 26th.
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Penny - Agree re: my vaca will provide medicinal benefits!! Re: hair, I understand that the top of head hair takes the longest to show up so I'm not stressing yet about that... Very cool that your IT work gets you to the States -- if in the Philly area, we'll have to raise a glass while blasting some music and singing along at the top of our lungs!
Kristy - I have the same challenge responding from my smartphone... So glad you're celebrating some fun events in between your rads trekking.
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top hair vs side hair--I must be an oddball. I have it growing on top and it stands straight up. If I coloured it reddish brown, I would definitely have a baby orangutan look going on.
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Husker: happy anniversary! yay for you; I hope you had a nice one.
penny: seriously, what is emu oil? Does it come from a real emu, or is that just a clever name?
silia: re: presentation: I am in water quality research and am reporting some results of some of my research on recreational water quality/public health. I'm glad your work gets you so much travel, penny. I hope to do more of that when the kids are a little older.
jules: 50 sounds outrageous. I have never heard of that. I start this week, but I am not looking forward to it.
pasmith: mine is growing in all over, EXCEPT right in front. Man, that better start showing up soon.
I have been feeling pretty bummed this weekend about starting rads on Wednesday. I enjoyed several weeks of no treatments and no doctors, and I am really not looking forward to getting back into it. Add these marker lines all over my chest and neck, and it's just a reminder to me (and everyone who sees me) that I'm still 'a patient'. I wish this whole nightmare was behind me, and then I get depressed because even when treatment is over, I'm going to be looking over my shoulder expecting the bc monster to grab me again. What a miserable roller coaster. Sorry to grumble, but this has been one LONG year. It is almost 8 months since diagnosis, which means 8 months of constantly thinking about and experiencing bc. You all know how I feel. Sucks sometimes.
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Jules - that sounds like alot of RADS - I have 25 and our diagnoses are very similar, ask them why.
Maxine - at least the rads are quick, I go every morning around 8:30 and then its over for the day.
Emu oil actually is oil from an emu - They reckoned a number of women where I do rads had used it with great success, although they point out there is no scientific evidence, Its supposed to be very anti inflammatory, You can get it on line. I assume its from the skin/feathers as they have a protective oily coating. Google it for more info.
Oh well - its 5:30 am and I am off to my personal trainer. Its cold and I should really be wrapped up in bed still.
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hi Penny, I don't know if you saw my post weeks ago but I was curious where you lived in Oz. I was in the southwest for 8 years
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Jules - I also haven't started Rads yet...and won't till end of July/early Aug. 50 does sound like a long haul...but we've all got our unique cases and got to do what's best for us (but yeah, I'd ask). I have met with the rad onc, who said that she would probably skip radiating my armpit and just do the breast and about my clavicle. Think they're worried about almost certain lymphodema since I had so many nodes removed. I'm very happy that they're thinking about quality of life issues, but will of course worry that they're missing something lurking there. My rad onc is the chair of the radiology dept at nyu, so will try to be trusting/not worry.
Main reason I'm getting a longer than normal break before rads is that I have to now sneak in treatment for the TYHYROID CANCER that they discovered during this whole thing. I've barely thought about it...mostly because it was just too much for my brain's plate while dealing with the bc. No one seemed that concerned about it (it's a very slow moving cancer), but now I'm starting to fully absorb it's a whole other cancer that's serious on its own. Mostly I'm just in denial about it. It's been so nice to be done with chemo, and while i'm still feeling the after effects of it, I'm getting back into the swing of a normal life. Now I got to go back tomorrow morning to get my thyroid removed. And then onto a lifetime of sythetic thyroid meds...to go with my tamoxofin. Can't even ponder all the SE's or weird feelings I might have in my future with both those prescriptions. I've barely even taken vitamins, now I'll need two drugs to keep me alive. Also will need to porbably get the radioactive iodine. Between that and the rads for my breast, I think it's inevitable that I will develop some kind of superpowers!
But on a moving-forward-note...had my mediport removed (had to because it will get in the way of the thyroid surgery) and was happy to see it go. Can't believe how big that sucker was....and how long the tubing is. No wonder it stuck out so much. They let me take it home with the warning "not to let others handle it." Don't think people are going to be lining up to touch my medical waste.
Also had my final TE fill before my radiation planning (which i guess is the cut off). My PS was out, so a NP did the fill. Usually she gives me one or two giant syringes of saline. But this chick said she'd keep going till i felt tight...she put FOUR syringes in. I went into the office still wearing my prosthesis and left with it in my purse (and with a giant, rock-hard boob). I keep brushing against it and wondering what it is till I realize it's me. So weird, I even have top cleavage again...though it looks a bit like the bad implants you see on porn stars.
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Hi Rabbit
We are in Perth, we have a place down south between Margaret river and Augusta though - beautiful part of the country!
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Maxine, I can so relate to your weariness of this whole bc thing!
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bikenyc--23 nodes qualifies you for "almost certain lymphodema"? No one has been the slightest interested in me, even if I comment on mild swelling and I had 28 out by the time they were done. I still worry about it but I don't know who I should whine at--my GP, I suppose.
Sometimes I wish I had a 'big picture' oncologist who is not so focused on only a piece of the treatment picture. The MO isn't interested in much beyond the chemo and what it's doing. The RO wasn't interested in anything when he saw there was nothing for him to radiate. The surgeon is only interested in what he cut out and what might be left to cut out. I'd like someone who is focused on cancer in general and would work with me to get the greatest benefit from all the different treatments involved.
I'm reminded of the story of the blind men and the elephant. They all describe the elephant differently depending on what part of the elephant they can feel. In this case, I'm the elephant!
Oh, and the thyroid cancer is interesting. Sucks to deal with that too, btw! I've had it on my mind all through this experience since I have had a nodule for a couple of years. Two biopsies have both come back clean. The Dr expected the nodule to shrink with the synthroid but it hasn't changed at all. He doesn't yet know about the BC since I last saw him between the biopsy and the lumpectomy. But I see him on Fri and I will be interested to hear what he has to say. I know it's all anecdotal, but it's interesting to see how many people deal with BC and thyroid issues.
I know what you mean about all the drugs. I hate having to mix them all. However, the synthroid--levthyroxin in my case--has had zero side effects. I sometimes wonder if it's doing anything at all. I continued to take it all through chemo because the chemo pharmacist said it wouldn't interact with anything.
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Penny, I lived in Mt. Barker for 2 years, then Rockinghamn (Waikiki) Went to Margaret River for holidays all the time LOVE IT there!
bikenyc, how did you find out about the thyroid cancer? I have had hashimotos for 7 years or so...just curious, will be thinking of you!
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bikenyc - sorry about the thyroid - sometimes you want to just shout haven't I had enough to deal with, not this as well! glad the port is gone at least thats one thing back to normal - it is big isn't it.
paxsmithx2 - yes the "almost certain lymphodema" is a worry - I also had 27 nodes out and they are particularly irradiating the axilla. You are right about how separate they all are. I particularly chose the hospital and BS because they said they practised as a multi-disciplinary team and all got together to make sure you had the right care. I don't believe any of them have spoken to any of the others - half the time what they say is conflicting. ( You need a port/ You don't need a port. The port is dangerous and must come out / The port can stay till next year if necesary. You can reconstruct bext year / No reconstruction after rads)
Maxine - hope the presentation goes well - probably does us good to focus on something other than this stuff.
Feeling very grumpy this week - no real reason. Someone put a good song on, and Silia and I can sing along.
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In honor of everyone who is experiencing fears or doubts, let's play Don't Stop Believing by Journey
Don't know how to paste the lyrics from hhe phone. Sorry0 -
LOVE that song!!
Just a small town girl, livin' in a lonely world
She took the midnight train goin' anywhere
Just a city boy, born and raised in south Detroit
He took the midnight train goin' anywhereA singer in a smokey room
A smell of wine and cheap perfume
For a smile they can share the night
It goes on and on and on and on(Chorus)
Strangers waiting, up and down the boulevard
Their shadows searching in the night
Streetlights people, living just to find emotion
Hiding, somewhere in the night.Working hard to get my fill,
Everybody wants a thrill
Payin' anything to roll the dice,
Just one more time
Some will win, some will lose
Some were born to sing the blues
Oh, the movie never ends
It goes on and on and on and on(Chorus)
Don't stop believin'
Hold on to the feelin'
Streetlights peopleDon't stop believin'
Hold on
Streetlight peopleDon't stop believin'
Hold on to the feelin'
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Yes, "Don't Stop Believin'" is an appropriate song choice for the jukebox at this time!
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Hey ladies...i am typing from my phone. Ihave been out of town looking for a place to.rent in Chicago and looking at crappy real estate there. I fool like I have been stuck in a really bad episode of Huise Hunters on HGTV! I can think of worse things though! I just wanted to say hi. So much has been posted since I was gone....dont know where to start. Divine...sorry about margins. Just crappy..period! Lily
..no medals for those of us with kids. I melt down...I run to the bathroom. My son thinks I have had diarrhea since December I think. I just melt down in the bathroom......I spend a lot of.time there these days. I melted down at dinner in a restaurant the other night when your beautiful memory filled home was sold. I was not prepared for the first person to buy it. For those of u doing rads....I hope you breeze through easier than chemo. Silia...sorry about the nails. Just not fair! I will write more later this week when I get time. Anyone.ready for a road trip to Chicago? We will probably move in August!0 -
I know what you mean about breaking down,was watching this show on dateline about a lady who had breast cancer, younger gal in her 30's I beleive. Anyhow long story short she did pass on but her fiancee continued her blog and tried to finish off her bucket list for her, things like travelling through canada on a train, going to india to work in an orphange well I started crying right there at the dinner table and my family just looked and me smiled and everyone kept eating while I just ate with tears streaming down my face like it was nothing out of the ordinary...lol...good grief!
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I went to surgeon today and surgery is scheduled for Aug. 5th, he seems very confident that the chemo got the cancer so he only has to remove a small amount of tissue. Yeah!!!! Just pray that the pathology report comes back good.
Hope everyone is feeling good and min. SE this week. I am one week pfc and my tummy has been so upset. Had to actually take a stool sample to hospital for testing. And dr. gave me 2 different antibiotics. Hopefully it is nothing.
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Some of the women on rads threads have recommended Trader Joe's Aloe Vera and I went out and bought it and used it for the last couple of weeks instead of some that I got at CVS. I just now looked at the ingredients of the Trader Joe's and found that it contains methylparaben. This is after I replaced all cosmetics with parabe free items. Just did not think to look as so many had recommended it.
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ksmathews_ have been struggling with stomach issues also. Called the onc today and the NP said they really didn;t have anything to offer-it would just have to run its course. She said I come come for a bag of fluids if I thought it would help. I am down 12lbs in a week-I guess if they aren't worried I won;t be either. Your surgery is in a Fri and mine is the following Mon.
Maria-I love it when House Hunters goes to Chicage-I am always blown away when they show the prices though. I love those Chicago loft conversion things. Not great for an active 4year old though. Your house sold to the first person who saw it? That is amazing in these times.
Penny-I saw where they are doing lots of axilla rads on you? What about boosts? I am having bilat mx but because I am refusing nodes they said they are going to want to do lots of axilla. I haven't been to any rad person yet. I know what you mean about getting conflicting info. That is why I left my first place. I chose them because they were a team-I just didn't realize how dysfunctional they were. My onc runs the show for me. We get all the info in and he sits down with me and we talk about what would be best for me. When I decided to remove the other breast he was so relieved. he thought it would be for the best but he said that is such a personal decision he didn;t want to influence me. I told him I really wish he had spoken up and listed his reasons because we had been making these decisions together-he agreed from then on to voice what he thought and I could make a better informed decision. He isn't happy about the no nodes but he understands why I chose that way. He just said that decising that way means I will have to give in on rads there
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lilylady I hope your stomach issues get better.
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Will be brief because on my phone. Maria, you will find your Chicago home but I understand how stressed you must feel. Glad that some have scheduled their surgeries and sorry for the SEs. Lately I find myself whining endlessly (my nails, everything tasting like cardboard). I know I'm exhausting and frustrating my dp... Fear I'll be even more annoying post-surgery - argh...
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so quiet in here hopefully that means you are all out enjoying summer. I am going camping this weekend in my new trailor yeah will be back monday. Hope you all have a wonderful weekend
hugs Kymn
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Well I am once again Master of the Universe!! It is noon and I haven't been in the bathroom or taken a nap!! That must mean I am truly PFC!!! Water is even starting to taste like water.
Kymn, it HAS been really quiet in here. I think just about everybody is finishing up. I hope your trailer has A/C. I haven't camped since I was a kid but we loved it then. It has been so brutally hot here for the last 2 weeks I can't imagine hardly leaving the house. heck i haven't been out of the bathroom hardly. Do you tow the trailer or do you have a campsite it sits at?
I got my MUGA yesterday. Tech said everything looks great. I have several other scans scheduled the first week of Aug right before my surgery. I have EKG and chest x-ray?? Mom and pre-surg physical Weds.
If you can believe it I am trying to remodel my family room before my surgery. New flooring and window treatments. furniture has been bought and under plastic piled up in my library for over a year. Sad thing is I am SO over it now. Wanting something totally different and lively and bright. Finances dictate i stick with what I bought-which is nice but... I was the slipcover queen for a while several years ago. Anything that stood still got covered-I absolutely know I can't get that done in 2 weeks. May drag my Mom out and see about an area rug.
Stay cool folks.
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I was wondering where everyone was.
It's pretty darned hot in Ontario today. We're going for a record--around 100*F with the humidex taking it up to about 116*F!! That's NOT my kind of weather!
I had to do another CT scan yesterday. It involved a huge amount of the nasty orange drink and then the dye (that makes you hot all over) was injected. I had a not-serious reaction to the stuff in the orange drink as a couple of rounds of big D hit yesterday and this morning. That didn't happen the first time I did the scan. Good timing with dehydrating weather to deal with too.
The good news is that I mentioned the port to the tech, thinking they couldn't use it and he said he was qualified to access it if it was a CT injectable or "power port". Using the port made the process a bit easier.
I'm also getting the urge to redo things around the house. lilylady. I'm starting with decluttering stuff. My son wants to do a garage sale with stuff my mom is getting rid of so I'm just adding to his pile. He can do the work and add it to his university fund.
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Just popping in to say my re-excision surgery is scheduled next Tuesday the 26th. I am glad they could get me in that soon. Hopefully the pathologist finds clear margins this time. I would like to get this part of the process over with so I can move on the the next step. I'm tired of riding this emotional roller coaster.......
It's cooking hot here in Ohio, too. I've been going without my wig a bit more because I can't stand going out in the heat with that thing on my head.
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