March 2011 chemo-lounge
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Interesting day in the chair so far. Wednesday is my normal day but I got pushed to Thursday because the oncs had some sort of conference yesterday and the clinic wasn't open. The clinic is now running behind and I waited more than an hour before I got called in. But the good news is that they managed to find me some Carboplatin, which is one of several cancer drugs in short supply in Canada right now. Apparently they have it for those of us already using it and new people may have to take an alternative. I'm happy because there have been reports of patients being delayed several days and I would like to stay on schedule. That's enough for me to call it a good day.
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Hi Ladies,
Hope you are doing well and having an easy time today.
Lilylady, I am so very happy for your good news. You made my day!
Pasmithx2 where in Ontario are you? I am north of Toronto about 2 hours. I go too Sudbury when I see my Onc which is very very rare. I feel being stage one that I do not get very much attention. Not sure if that is a good thing or not. I read about others getting scans, xrays, and such. Sheesh I had to request a lung xray!
I am 9 days out of chemo and woke up this morning with my gut NOT hurting for the first time in months! FInally I am starting to feel a little like my old self. I have to admit that this month has been the hardest of my entire life. I have been experiencing horrible back spasm as a result of the Nueprogen shot, the night sweats are horrible and I am hoping the relax soon.
Trying to get back to the gym and on a detox diet, one step at a time. I want to take care of this gooey belly before I start back on the Tamofin. God I hate that stuff.
Take care all.
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Today is is dreary again..horrible rain yesterday! Where did spring go and when can it come back? So I am now 3 weeks and 1 day post chemo and I am more tired than I was the entire time during chemo. I have chemo legs (burning, tired legs) and my doc said I am officially anemic. I have been on iron supplements for a while now too so that's a bummer. I go back to work next week - dreading that horribly. I am still working out but lighter since I have been tired. I just want to nap right now (which is sooooo odd for me...I never nap - didn't even nap when I was pregnant, after my BLMX or during chemo!). I hope I get my energy back soon. I am not use this at all. I am still dealing with the allergic rash from chemo. I am trying to take zyrtec now to see if that will help. I took Benedryl last night and slept great and had no itching until this morning when I woke up. That felt good (a full night's sleep for a change). I hope this stupid rash takes a hike! It is driving me crazy. I am still bruising everywhere from itching (my left hip/thigh is covered in bruises!!!!). It is so nice to hear of more and more of you ladies finishing up chemo or moving on to your second chemo regimen. We have all made such progress since starting two months ago. Without sounding odd, I want to say how proud I am of all of you! Everyone has grown so much, been so supportive and encouraging even through the dark parts of chemo. It will be such a good day when we can all say we are done with chemo together. I can't wait until that last one of us is finished! That day will be awesome! I wish all of you a good weekend - for us in the US it's a long weekend so many of us are getting out of town. Safe travels to all.....be well!
Leann: So glad you are finished! Great news! I hope you are feeling OK with no SE's.
Silia: I have heard the Jersey Shore is so nice....get something special planned. You deserve it!
Pasmith: A Med. Cruise sounds fabulous!!!! YOu will have so much fun for sure and the food will be amazing I am sure. That sounds like a great way to celebrate with family!
Supersally: YOur trips sounds so fun! I love the house rental idea and can't wait until August when we go. Your trip with your Mom will be so special I am sure.
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Lilylady - Great news and expecially after only 3 treatments. Congrats!
Kymm - So sorry to hear that you are still suffering. Have they ever changed your anti-nausea meds - maybe you are not getting enough.
MaxineO, Colodisneylover, PennyCookson and Maria - Thanks for your words of support and advice regarding the surgery. I too feel that the surgery could not be as bad as the chemo so I think I got the worst part of this out of the way (although they did leave the door open for more chemo depending on the final pathology report but I am choosing to be optimistic right now that it won't be necessary). Silia, since you are having yours in Sept. will let you know how it went.
Regarding the wig, I am always afraid it has moved and when I ask DH if it looks OK he always says yes without even looking. I am always afraid that the wind will blow it off.
Question - I had my Herceptin infusion yesterday and the onc nurse had me put my arms to the side and flex my chest to make my port more accessible. Today I noticed that my port has moved up - it is now above the incision and bedore it was below. Has anyone else had this happen and should I be worried?
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Oh, and Pasmithx2- The camisole sounds great. The hospital is providing a stretchy camisole that opens in the front and has no straps and I am wondering if it is the same as you described. Hope so.
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Maxine - we went to a conference in Vegas last year and then spent some time at Zion National park for some walking. Vegas is realy tacky but as long as you accept that and just have fun its ok, DH loved it. You could do the Grand Canyon from there and then drive up to Zion, lots of lovely cabins available and driveable to Byryce Canyon as well.
(spoken as an Aussie providing advice on tourism in the U.S.
I am planning 2 getaways. tenting at Mount Augusta in October - access is 4WD for about 200M, then the whole family to a relaxing beach holiday - maybe Thailand next year after the left MX is healed
timerdog - glad you have finished
Maria - so unfair to feel bad now when you fought so hard to keep fot all the way through. Hugs
Leaving now for the cocktail lounge - hope the vein fairy is watching out for me
Penny
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Lilylady im so happy to hear your good news you are an awesome woman.
We will be staying in nyc at the helmsley park lane, gonna do a manicure at bergdorf goodman,shop on canal street eat in little italy and pretty much whatever else we can squeeze in.
ive fdlt like crap these past two days. Maria how are you doung today.? Also how are the rest of you ladies? Hugs min-0 -
Good Luck Penny with chemo and the vein fairy!
Enjoying reading about everyone's travel plans. We went to the Grand Canyon two years ago. We stayed in Phoenix and drove up there one day. It is really pretty in Phoenix and quite unlike anything on the east coast. They call it a lush desert. Funny. We wanted to go to Sedona, but ran out of time. It is supposed to be really nice.
We're going to Ocean City MD for a week's vacation between chemo and surgery. Hopefully my sister and her family are going as well. If not, we're bringing my niece with us and maybe my sisters will come down for a couple of days. Like the Jersey shore more, but DD has a dance competition she is going to in OC, MD. We're also trying to pick out a nice restaurant in Philly to celebrate DH's 50th b-day which is on the 4th of July. We're celebrating with my MIL, and two BIL's and their wives. We're going to do it at the end of June because my DS is coming home from grad school in Minnesota for a week then. Haven't seen him since Christmas. It will be nice to see him.
Sorry that you're still having problems with your rash Maria. Hope that soon it will just be a bad memory.
So still don't know what's causing all the fevers I've been having. They tested me for everything and it all came back negative.
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Good Luck Penny with chemo and the vein fairy!
Enjoying reading about everyone's travel plans. We went to the Grand Canyon two years ago. We stayed in Phoenix and drove up there one day. It is really pretty in Phoenix and quite unlike anything on the east coast. They call it a lush desert. Funny. We wanted to go to Sedona, but ran out of time. It is supposed to be really nice.
We're going to Ocean City MD for a week's vacation between chemo and surgery. Hopefully my sister and her family are going as well. If not, we're bringing my niece with us and maybe my sisters will come down for a couple of days. Like the Jersey shore more, but DD has a dance competition she is going to in OC, MD. We're also trying to pick out a nice restaurant in Philly to celebrate DH's 50th b-day which is on the 4th of July. We're celebrating with my MIL, and two BIL's and their wives. We're going to do it at the end of June because my DS is coming home from grad school in Minnesota for a week then. Haven't seen him since Christmas. It will be nice to see him.
Sorry that you're still having problems with your rash Maria. Hope that soon it will just be a bad memory.
So still don't know what's causing all the fevers I've been having. They tested me for everything and it all came back negative.
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timerdog--I live in Georgetown, about an hour or so NW of TO. I had my surgery here and then had to go down to Mississauga (Credit Valley Hospital) to see the Medical and Radiation Oncs. CVH has a nice chemo clinic and great staff. The commute is only 30min. I'm pretty happy there. The onc will do tests even when he doesn't seem overly interested in my concern. Today he ordered a urinalysis without blinking because I asked if suddenly having foamy urine suggested a change in the kidneys.
Parry Sound isn't that much further from Mississauga than Sudbury. Could you have been referred down there rather than to Sudbury?
mdg--We will likely eat our way through the Italy ports. I don't do well with Italian wine, sadly, but I have NO problems with Italian food!
ChrissyW--if the hospital is providing a cami, go for it. Mine did not open in the front and it did have straps. But it was so stretchy that I had no problem getting it on and off with the limited range in my one arm. It's neat that the hospital will provide it. I went home with the drains 'a hanging.
re: wig--I felt good at chemo today. I had a chemo nurse who was new to me. She seemed to think I was in for my first infusion and started to give me the tour. She seemed surprised when I said it was my 4th and I knew the drill. I think the hair fooled her.0 -
OK-I have to join the wig spotter team. I took my whole family out to a nice restaraunt to celebrate and they seated us in the center of a big room at a round table. It went great right up until we left-my youngest brother followed me out and said "Did you know there is a big tag hanging out of the back of your wig?" I hadn't cut it out because there is a seam there that bothers me and the tag is silky so i usually fold it up to soften the seam. Tag is probably 2 inches long and says Gabor on it.
Of course being the bratty younger brother he had to point it out to everybody else and call me "Minnie Pearl". I just took it off and threw it at him which thoroughly grossed him out!! He said it felt like a small dead animal-I told him that's what it felt like to wear it also. He was a somewhat hippie when he was young and I have an old picture of him wearing racoon tails(actual road kills) attached to a scarf-I am going to blow it up for our memorial day picnic-maybe to tablecoth size. We'll see about who is wearing small dead animals on their head!!
Husker-hope the trip is going well-no way could I do a wig that length of time...or high school kids either for that matter.
Supersally-I have always wanted to go to Seaside-it is the most perfect looking town. It is always featured in articles in my magazines. I have vacationed the last several years in private homes with pools right on the beach and I won't do a resort ever again. It is so good to slouch around in your suit all day, never have to worry about coverups or dragging all your stuff around or the whole bathroom thing. I am curious though-don't you like any of your texas beaches? I have always wanted to try Mustang Island.
Paxsmith-I can see you in Italy in some chic little hats-looking very European. Or buying the fancy scarves. I think it is Kymn who like the Beau-Beau scarves. They are the ones who will send you a free one. I have a straw fedora I got from Target that I like. I used to not be able to wear hats-I thought I had a big head but really it was my big head of hair.
Leeanne-congrats on being done with chemo-so many finishing up. I told sewingnut I have chemo envy. I get #4 tomorrow which makes me 75% thru.
My trips will probably be in the early fall. I think a girlfriend trip and a mom/sis trip. At least one will be on a beach-the other probably at a lake house one of the girls owns. My skiing days are over but still love to run around the lake on the boat.
Packing my bag for Tx tomorrow. Have onc and NP questions typed out. had bloodwork this morning. I am getting pretty good at thisway more organized than i sued to be. Still plan on being there all day. have decided to stick the Benadryl in my pocket and not say anything. Last time was my first time at the new place and I refused it and it caused a big delay while they waited on the onc to say i could make up my own mind. They never gave it at the old place-it makes me silly and sleepyand slobbery-and I save my slobbering for way more private places and people. I have a stack of new magazines I am looking foward to..
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Lilylady, too funny about the wig tag. Told my DH his job was to keep by wig on straight and foob in line with the other one. So far he has done a great job. Girls at work also straighten my hair as need. It's great to have good friends!!! Good luck with #4.
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ok out of the chemo fog from number 4 my good god these are getting harder and harder to get through. And I have one word Chemo Ass......sorry but what on earth does it really have to smell that friggin bad coming out of us...sheesh
Ok dont have time for a full rant of this round but wanted to let you all know I am up and running again
Thank you all for your love and support will be back to chat laterHugs Kymn
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Kymn--Thanks for sharing! But I hear ya all the same. Glad to hear that you're climbing your way out of the hole. I'm on my way in, hoping #4 is a shallow hole.
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Glad to hear youre coming out of the fog Kymm i know its tough, i feel your pain. Just had my last ac on tuesday and boy am i happy for thr 3 day weekend. Thinking of you pasmith as you go in for yours.
hugs min0 -
Kym - so glad you are feeling better. I have just had #5 - I keep thinking - when I go off this time I will be able to think "I will only have to go through this one more time".
pasmith - hope #4 is manageable - mine was better than #3 before the infection.
Had #5 yesterday - They couldn't find a vein on the left arm so had to use the excision arm again. They have also dropped the antibiotic dose and the cellulitis is spreading again this morning so I am going to increase the dose again myself - don't care what they say - I worked in a bacteriology lab for 13 years.
Picked up a booklet at chemo yesterday - its for friends and family on what to say and not say - hilarious when you realise how often people say the Not stuff.
I often get these:
Did they get it all?
You really should get out more
If I had breast cancer I wouldn't be working
You look so well you must be fine
My aunt had breast cancer and she is fine now
My friend had breast cancer - she died last yearShould be mandatory reading for anyone we tell about this stuff
lilylady - Like the idea of the wig watcher - but definitely needs to be female, My DH always tells me later "There was a moment there when the wig was lifting off in the breeze" - Thanks Love
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Just got home from #4 and I am really bummed out. I went from my feet not touching the ground because of great scan reports to total depression from the onc visit. He was extremely pleased with the scan results but then told me he was going straight to the phone to call my 3---three???-surgeons to schedule appointments. Breast, liver and lung. WTF??? My tumors shrank so dramatically I guess I just assumed we would melt them to death. Kind of always knew i would have the breast tumor out but didn't think I would need the other ones. he said I get 1 month to recover from chemo #6 and then he wants the surgeries done back to back. Breast first, then liver then the lung. He said they will go in the order of which are the easiest to tolerate. That would be Aug 8. He wants all surgical consults done in the next 2 weeks. I am not even going to listen to the answering machine toight. Bummer. Guess that fall beach vaction isn't going to happen.
Next great news-I have to go back for bloodwork next week. Dangerously close to transfusion level. Each tx my counts have come back up to almost pre-chemo level. This time they have dropped like a rock. I have never had to have a Neulasta or Neupagen =probably also wasn't pre-approved thru insurance togo get 1 tomorrow. They want me on house arrest til I go back. I feel fine so I will probably ignore that. I am notlanning on a rock concert or anything other than friends and family.
OK enough of that-anyone want cheese with my whine? Have a happy 3 day weekend-not usre if our Australian and Candian friends celebrate Memorial Day.
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I am new to the site, but I too started chemo in March. I do TAC once every 3 weeks. So far the tumor can no longer be felt and I have had no sickness. Just no energy. I do work pt and that helps me alot. Good luck to all!
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good luck passmith hoping number 4 for you is a quick recovery,
welcome ksmathews love your pic so cute, welcome to our little group I know you'll find the comfort and understanding you need here.
lilylady sorry about all the upcoming surgeries, you may not get a fall trip but it will be summer somewhere when your done
. Keep focusing on the great news about the scansPenny yes I am trying to think that way too, I am telling myself I am only doing one more, then when I am done that one I really will only have one more so I know I wont quit there. the silly mind games we have to play with ourselves to get throught his hey, its crazy
Thanks Mig, does that mean your done now?? we had our 3 day weekend last weekend here.
Have a great friday all
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Hi ksmathews -I am also TAC 3 weekly and similar - tired but no sickness - welcome and good luck, what number are you on?
lilylady - I know the surgery sounds scary, but it actually means they think they can remove it all. If they weren't sure it had shrunk to that point they would not be considering surgery. This means that following surgery you should be cancer free! I read some stuff on how good the results from liver surgery is when I had dodgy scan results. They only do it if the cancer is discrete, accessible and in only part of the liver and they get brilliant results.
No long weekend for us here.
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liliylady: sorry about the news, but I agree, perhaps it's good that they can actually cut that crap out of you. I wouldn't be looking forward to all those surgeries either, though. Tha stinks.
penny: I love the list; I think I have gotten all of those. A lot of times after explaining a little bit about my bc I get a lot of "At least..." followed by, it hasn't spread, bc is treatable, they found it early, etc. Usually I just don't correct them, unless I'm feeling sassy, then they get the full on attack of how much it sucks. I think most people just need to comfort themselves while they secretly thank God that it isn't them!
I have worked through chemo, and I think that makes people think it isn't that serious. Maybe I'm looking for sympathy where I shouldn't!
Welcome ksmatthews. I hope your chemo isn't treating you too badly.
kymn: good to see you here. I hope you are feeling LOTS better.
penny: good to see your beautiful face! Great photo!
Hope you all have a great (short/long) weekend.
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Kymn, LMAO I can totally relate to chemo ass. Now that I am finished my chemo I am starting to detox which makes that sh1t even worse! I hope you feel better soon, when ever yo post I can relate to how you are feeling. I had the a hard, hard, month and I am so glad it is over.
Penny, I as well love the list!! Too funny. I often get that question, "did they get it all?".
I say, "if I live for the next ten years then we'll know."
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PennyCookson--Sometimes I think it's not that any one person says some of the things you listed, but that you have to endure the same things being said over and over again. I keep hearing how great I look. That's fine but it starts to feel like they think I'm faking it. Or they assume that it isn't that big a deal. I think MaxineO is right that most people are trying to make themselves feel better, secretly grateful that it's not their problem. If they lack any real experience, they have no context and have no clue as to what's appropriate.
lilylady--I agree with other comments you're getting. Focus on the great scans and be glad you have an onc who's not leaving anything to chance. I was not happy doing a lumpectomy, re-excision, and mastectomy all within 1.5 months, but I was glad that the surgeon (who was a general surgeon, btw) was determined to get good margins and leave as little as possible for chemo to clean up. The MO and the RO were both confident that I was cancer-free by the time I got to them. That confidence means a lot.
Kymn--I'm all for mind games if that's what it takes to get through. I live life in 3-week segments right now. I can't focus any further ahead than that. I know that next week will be crap and then it will be good and then I start it again. I'm starting to see the end, but it's still 3 3-week segments away, really. That's too much to deal with all at once.
Our long weekend was last week. I could do with another but the weather sucks anyway. I have a 1rst communion to go to tomorrow but it's probably crash day. I hope I'm ok for it but who knows? I won't go to the church, but will see if I can handle the dinner afterwards. We've lined up 2 cars and my son will chauffeur me home when I've had enough.0 -
pasmith, I hate that one too: "You look great". Really, I don't look or feel all that great. I look okay and I feel reasonably okay. I often tell people who ask me how I feel, "I feel reasonably okay". I am not going to say great just to make them feel better.
I have a neighbor who is currently going out of his way to be overly helpful and concerned. It's getting on both my DH and my nerves. Couldn't ask for a better neighbor, but all of a sudden he's over-reacting to my situation. Sometimes I just want to go out and do yardwork and not spend the time talking to him to make him feel like he's helping me thru this!
I get the "my --insert type of relative here-- had --insert the type of cancer here-- and they --insert the outcome of their cancer here--" conversations too. I think well-meaning people are just trying to relate to our situation. It doesn't bother me too much unless they go on and on and that's all they want to talk about. I have a co-worker who looks at me like a deer caught in headlights and she will only steer the conversation towards me and my health. Even tho I try to touch on other subjects, its like all she sees is me with a big C on my forehead or something.
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Hi Lilylady, just an inconvenience so that you can go on and enjoy that vacation when you finally take it. Yes surgery sucks but they are gonna get the stuff out of you
Kymm just finished with ac but start with taxol on the 14th thens 35rounds of rads in october...does thiscrap ever end?0 -
Right up there with PennyCookson's list of dumb things people say: someone on FaceBook posted a status saying they are seriously considering shaving their head--for fun.
I'd have liked to have commented with something like, "what a dumb@$$ idea!" Instead I just said "not recommended." I guess it bugs me because she knows my situation. Fun?!? Her hairdresser said she'd do it because it would just grow out in a couple of weeks. ?!?!0 -
Lilylady, I agree surgery sucks, but it really is good news that you will be cancer free when you are done. And like you said to Kymn, you are strong enough to do this. Life will all the sweeter after, at least that's what I keep telling myself.
I keep getting the imposing comments/questions from my sister. Every time I tell her anything (which I only do because she constantly asks me very specific questions like does your tumor have Her2), she looks it up on the internet. And then I get e-mails telling me what she has found out about that. WTH does she think I need her to look these things up for. She is driving me crazy. And it is getting me so upset. Today I finally told her I don't want to talk about cancer. I probably made her mad. But hopefully I saved myself a lot of aggravation. The last straw was today when she sent me an e-mail she hoped I'd get some comfort from about someone experiencing fevers on some kind of cancer treatment. Seriously how much does she think of herself. I have a whole medical team to give me advice and explain things. And I am perfectly capable of looking up things on the internet myself. I don't know for some reason it is okay to me to talk about things with you who are going through the same things, but not her. I am so angry that I am probably making myself sick. I know I'm overreacting, but I've just had enough of her and her nosey questions and know it all e-mails. I do hope I didn't hurt her feelings though.
Uggg.....cancer just absolutely sucks.
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Dear girls, thanks for your encouraging words. am over it now. it was just such a total shock. All i have heard from the beginning is at stage IV you are not curable. The BS and the liver guy both called me at home last night after 7pm.Pretty awesome to do that on a Fri night before a holiday weekend. they both said my onc is so passionate about my case that they wanted to touch base with me and not leave me worrying over a long weekend.
The BS said i have fallen into a very small category for Stage IV people (less than 2 %) that are curable. She said the name but I was too befuddled to ask her to spell it. I have tried numerous spellings but can't get anything to pop. I am going to ask a couple of the ladies that seem like cancer PHDs to see if they know it. it sounded like oglimentary or aulimentary or something like that. I had a real good talk with her. Will save that for later. I will want to hear how you guys did after your Mx. I have lurked on the April and May Sx threads-doesn't seem all that bad. (Easy to say if it isn't you with drains hanging out of you)
Liver guy just talked briefly but also said my Onc was very excited and really wants to move forward so they will call me tues to set an appt. he said he has my records but I have to get him copies of the scans. he said judging by what he sees I would be in for a minimally invasive procedure. Maybe RFA where they stick a probe in and burn it or possibly laproscopic. All good to hear. he would be the second surgery.
I did not hear from the lung doc but that is OK. That is the one am worried about. My mom had some histoplasmosis in her lung and when they tried to remove it they ruptured her pulmonary artery and she ended up in a coma for a month. it was a hellish 1 1/2 yrs getting her back on her feet. They had to rip out the entire lung to save her life. I know the odds are small for that happening. that surgery won't probably happen til Oct anyway.
I am curable-who the hell would have thought that and how could that not be the focus instead of worrying about throwing up from anesthesia. What a butthead.
Kymn-totally relate to cancer ass. I call mine Cactus Butt. I keep a supply of that stuff they use on babies for diaper rash. seems to help a little. I have upped my dose of Anti-D to try to keepfrom gettng there. it never occurred to me to take more than the bottle says. I think that's how I got C last time though. Pretty fine balancing act.
Well,its outside to cut the grass-and PRAISE GOD I am woman enough to do it.
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PennyCookson- I will be doing #4 on Tuesday. Hopefully it goes as well as the others. The worst part for me is being tired and the fact that it fries my tastebuds. I am just now beginning to taste my food again.
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lilylady - wonderful news, and they don't say this stuff to you unless they are confident. So happy for you - the surgery is a short term problem - the result is life.
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