August 2010...anyone starting chemo besides me?!
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Rachel: I think you have such a healthy attitude. You always draw on the idea of time handles everything and you are right. Unfortunately our entire thread seems to be littered with Type A, control, workout freaks so your "sage advice!" is both coveted and summarily dismissed as Type As never have TIME! Seriously, though, you are correct in if we could just take it a little easy, time will fix this but I can't stand taking it easy. I feel like I am letting life fly by and my list of stuff to do is ever-increasing! You take things in stride, though, and it is refreshing. I just cannot wait to be able to workout enough to put energy back in my tank. I know it is going to take a while and it is essentially a zero-sum game against myself and my energy tank but I am happy to put in the effort to develop "x" units of energy through "y" activities so I can enjoy my life again! Man, this has been such a death valley of energy disappearance...you bring me balance, Rachel
Sweeney: how is the manufacturing tycoon doing? I am going to call you "Sweeney Hathaway!" Good for you on breaking your workouts into 2-15 minute units. You are now getting 1/2 hour, woman!!!!!!! Good for you. I am so afraid to workout because I am afraid of racing that poison through my body expeditiously and getting the cold, clammy sweats again and passing out. I am, however, going back to the 20 minutes on the recumbent bike this week. I MUST!
Valet parking: good news from Yale! When I start rads I can valet park every day for free!!!!! Whoo hoo! That was a welcome bit of news as my tired a$$ was not looking forward to 1 mile round-trip trek from the parking garage to rads every day....even though I can desperately, desperately use it!
Oh, girlies...the times they are a changin' and better times, they are a comin'
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Question: My skin is red and blotchy around my eyebrows. Has anyone else had this? Is it just a skin reaction from the brows falling out and growing back? I keep moisturizing the area, but it isn't getting any better.0
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Thanks so much for your generous and helpful responses. I love the idea of water retention as a comfort for our recovering bodies. And it's true that the swelling has lessened from my face in recent days, and maybe my arms too.... so, my body IS healing and recovering and it's tremendously helpful to remember that.
I also identify with comments about the psychological experience of the end of chemo. Many friends have said to me, "You must be soooo happy to have chemo over." But, the reality has been much more complex and nuanced.... In the three weeks since my final chemo, I've felt a great deal of sadness, compassion, emotional exhaustion, fear, sensitivity, gratitude, curiosity about what's next, and more. Many of the emotions I've held at bay over the past 6 months have emerged more strongly. When I welcome them and accept them, I feel better than when I either deny them or obsess about them. And I'm feeling more and more positive as time goes on. I just attended a five-day meditation retreat -- totally a new thing for me. That's helped too.
Warm wishes and big thanks,
Katherine
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Well here we are wading thru the mire to the end of the year, the end of chemo, the end of whatever.... JUST END already! I meed with my Onc this thursday and thought today would be a good day to make a list of questions for end of chemo start of arimidex, etc. So will do some research on BCO and other sites. Suggestions? I am just getting a deli tray for xmas dinner as everything will taste bad to me anyway. My fatigue has been culumative. I will probably eat yogurt and tangerines. DH gives his last finals tomorrow so I will have his help at home for a month - yeah! I lost my big toe nail and the other one is barely hanging on. I remember having a crying fit in Aug when I read that losing nails could be a side effect but at least I wasn't surprised by this when it actually happened. fingernails are sore but hanging in there! Healing thoughts to all of you.
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Ladyinbama: too much moisturizer can actually block your pores. I would wash my face well and then leave it alone for a few days. Even though it might get dry, let it breath for a few days. It might be getting more irritated from the moisturizer.
Financial news: I listen all day and a commentator, who I am normally enriched by, is talking about the "resiliency" of the American people under tough economic circumstances blah blah blah....how the heck are we supposed to be resilient with NO JOBS?! Sometimes you just want wind up and pop someone! 10% unemployment sort of takes the numbers out of the equation. They spend all day tossing around vowels and consonants in an attempt to appease themselves. Then there is reality.
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Coping and thinking - One of the things that has come up for me lately is the idea of choosing to do something. A lot of times I am doing one thing, trying to get it done, and thinking about the next thing I need to do. Now it occurred to me to choose to do something and to do that something fully. Even if it is washing the car, I am washing the car, doing that, not thinking about going to the grocery, paying bills, eating dinner, just washing the car. Does that make sense? The idea to me is to try and be present for what I am doing instead of off in my head somewhere. I think this cancer has told me that really for sure what we have is the present moment, no guarentee for the future.0
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Omaz- that is totally Buddhist of you. In a nutshell that's the whole sum of Buddha's teachings!
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Sweeney - Is that what it is? I have been a scientist for so long and science has really helped me read the research articles but did not help me very much with the harder questions of life and death that bc threw at me. I have been struggling a bit to find my way through those harder questions and you may have just told me the name of a way that might help me, thank you so much, I will look into it.0
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Zen! On Saturday I listed a book here that I thought might be a consoling and perspective-drawing read for some of us. I later removed that reference because the writer is a Buddhist. I did not want to get a religious sidebar going. I do embrace some elements of Buddhist philosophy while I have been raised Irish-Italian Catholic. Omaz, Sweeney is correct: being only in this very moment is the cornerstone of Buddhism. You don't, however, have to call it "Buddhism" but rather your new way of operating! If anyone wants the book title, PM me.
Handweights: I am using light ones to do some curls, kickbacks and trap work while I study today and it feels great! I feel like I am squeezing junk out of my muscles...just wringing that garbage out of there!
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Handweights - I have been doing hand weights too. Does seem to help. Yesterday morning my husband and I went for a walk on one of our small hills. I haven't done it since around chemo 2. I was thinking it would be a good time to try shuffling up and shuffling down. I was looking at the mountain and one foot went off the pavement and when I tried to catch myself with the other (which normally would have been easy) I fell. Luckily I rolled just like in the movies. My poor husband, there I was laying in the middle of the road on my side (cause when you roll you go farther!), took me a moment to mentally check my parts, then I reassured him I was OK. Just a couple little boo boos. Balance not up to par yet but I did the hill!0
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Omaz: we are a calamitous mess!!!!! I nearly fell in the kitchen a few moments ago which is no doubt low blood pressure related ah-gain! That story of your fall is sad but I am glad you rolled like in the movies! Geez, what chemo does not do to us. I am now going to try to get a little exercise in before I take a nap which is what I would prefer to do right now. Naps...my new favorite!0
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Omaz: I read a book a few months ago called The Joy of Living by Mingyur Rinpoche, a monk. I got it as a resource in trying to learn to meditate. But it's a good basic text on Buddhist thought. One of the examples he uses of the Buddhist mindframe is eating and being in the moment when you are eating (the taste, the smell, the way the food looks, the way it feels in your mouth, throat, etc.) It was good if you want to check it out.
Lizzy: My skin is looking worse. My cheeks and eyes are now rashy-looking. Maybe I've put something on my face I'm allergic to? I'll wash it and leave it alone, nothing on it, and see how it does. Argh! Always something, isn't it?
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Lady - Thanks for the book idea. Skin - have you been in the sun? I notice that my skin turns red easily from the sun from chemo. Hope it gets better soon!0
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Hey all --
Went to the oncologlist today for my 3 wk follow up. I was surprised that my WBC was a 3.9. I thought it would be higher. My other counts were back in the normal range except that my RBC count was a couple of points low, but nothing major. She said that was all fine.
What is not fine is my port. She was very disturbed that it's leaking and said "This port has to come out NOW."
SO I come home and call the surgeon who placed it and her scheduler is most disagreeable and says "Well, I CAN"T schedule you this week and next week she's going away!" Niiiice.THe oncologlist cultured some of the fluid that's leaking from it to see if it's infected. She doesn't think so but it's ripe for infection with the open wound (that's been there for weeks-just NOW everybody takes notice!)
Anyway, so I can't have another doctor remove it because they won't take out a port that another doctor put in. THis really sucks - if it ends up infected and I land in the ER, you know SOMEBODY would take it out! So it's just more pre-holiday non holiday related stress. Nothing seems easy for me - UGH!
I start on tamox after the port comes out. She recommended having my ovaries removed once the tamox is done-not sure how i feel about that but I do know I do NOT want cancer back - no sir-ee.......... And since my aunt had ovarian cancer and my grandmother and two sisters had BC it's probably not a bad idea.....:(
Anyhow, so that was today. I then went shopping and am now wrapping the kids presents while they're at my mom's overnight. I'm more than 1/2 done so I'm pretty happy about that!
Hoping to make some headway tomorrow on getting the port out - thinking of calling the oncologlist office and telling them the scheduler at the surgeon is not cooperating and that she either needs to pull some strings or help me find a doctor who WILL take it out.................
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Calamity I think it is a very good idea to call your Onc to tell her the scheduler will not work with you. I don't buy it that a surgeoin will not take out anothers placemet of a port. My port was put in by a visiting surgoen. I have to have a different surgeon remove it! You have had way more than your share of aggravation with your port.
Lady in Bama, you have eyebrows? I was trying to put a little really pale eyebrow pencil on just to give a little definition to my face and my eyebrows are so gone, gone, gone that I couldn't do it properly. I have noticed that all of my skin is just bad, aged looking. I recall they told me on my fist group visit that one of the things that chemowould do is age me. I agree, that is beter than the option but I guess I hadn;t really thought of what that would mean.
Wherria and Momof2, I had my lumpectomy in Winfield at CDH just before we moved in June. I lived in DuPage for 40 years. It is a great place to live, good restaurants, forest preserves, schools and medical facilities. My breast surgeon was wonderful, competent, thoughtful, and inspired confidence.
I continue to feel a little better each day, measure with a micrometer though. I still get dizzy, breathless, very difficult to go up even one step. Those who can run, super, I hope to be able walk around again. I think we are in different life stages but I want to function again. Go to the grocery store, or the dog park and stroll around. My G'ma's lived to 88 and 93, I am 65 and feel so out of shape. This chemo knocked me down so much. I have been amazed at how bad I have felt after the end of chemo.
If you are having a bunch of symptoms you might want to look at all of the symptoms of Neuropathy. It is not just numbness, it includes most of the symptoms we have been talking about. I was very surprised to read this myself.
Hugs to all my BC.org friends
GInger
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I saw the onc today. I told him about all the swelling I've been having in my ankles and feet and he seemed to think it had something to do with my neuropathy, which has generally been getting better. He prescribed a diuretic which I will start taking tomorrow. So, hopefully that will help.
JoyKK - I finished chemo the same time as you, and my ankles have been huge for the past week and a half. My arms are fine, but when they weighed me today, I was up 7 pounds in 3 weeks - that has GOT to be water weight. Right? ;-)
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calamtykel If you need your port removed because there is an issue its BS that the can't move the schedule around to fit you in or find someone else to do this. I would leave a message for the port surgeon that this is ripe for infection and should be removed before she leaves for vacation. If it is not then what ever happens is a result of her not treating you. (Sometimes you need to scare them a little).
Gingerbrew I still have eyebrows but who knows. I have 2 more treatments. I highly suggest you look at the eyebrow section here: http://lookgoodfeelbetter.org/beauty-guide/makeup-step-by-step It's an excellent guide on how to draw them on. I also willing to bet you skin will go back to normal after chemo. I have been pretty lucky as my skin looks good but very dry, part due to chemo and the other due to winter. Yes the wrinkles are a bit more around the eyes. Keep moisturizing. I doubt you look 10 years older… chemo just makes you feel that way at times.
lisasinglem That sounds like water gain to me. I seem to be losing at a rate of 1lb a day right now after I put on 6. Keep drinking fluids but stay away from salty foods and caffeine. I do hear tea is a natural diuretic but stick to herbal (no caffeine).
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Ginger - I just have a little bit of eye brow left near the center, the rest has either fallen out or is too thin to see. My skin too, I hope Lago is right that it will get better. I see it especially on my cheeks, its hard to describe but the skin is looser with little wrinkles all across it. I do hope you keep feeling stronger each day. At night I get up and feel like an old 80, everything just hurts. One thought, have you tried reflexology for your feet? We have a woman at our cancer center who is licensed and does it and I think it has helped with my neuropathy. For certain my feet feel invigorated after a treatment. She rubs all over and the circulation seems very much improved afterward. Big Hug to you, hang in there!0
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Ginger - that is very interesting information! I agree with you - it's a flippin' port for goodness sake. They can take off a BREAST that they didn't put there but not a port!? ;D
It's freezing here in NJ today - hoping to finish up my wrapping!
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CALAMITYKEL - If your onconlogist is concerned about your port, it is not acceptable for the surgeon to suggest that you wait 2 weeks to have it removed! Follow-up with your oncologist today and see if he/she can contact the surgeon directly. A port removal is a quick procedure and I would think that you could be added on this week!
I'm now 4 weeks post chemo (dd AC x 4, DD Taxol x 4) and the numbness in my feet doesn't seem to be getting any better. Are there other's out there who are further out from Taxol who can let me know when their neuropathies started to improve.
I'm grateful to be done with chemo but all the little lingering problems are adding up and getting bigger in my mind. I have truncal lymphedema and still have axillary webbing from my lumpectomy in July. I'm having my radiation simulation tomorrow and begin rads next week. I'm so, so worried that the lymphedema is going to get worse and I'm already uncomfortable most of the time. My lymph nodes both had extracapsular extension and I know that the radiation will decrease my risk of local recurrance, it's just that lymphedema makes me sad.
Thanks for letting me vent.
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I called the oncologist this morning and left another message for the surgeon. Unfortunately, this surgeon has serious issues. I need another doctor and I have no idea where to find one.
I too, don't understand how a 20 minute procedure is such a big deal. It's been 24 hours and the scheduler hasn't called me back - going to try her again. I had to deal with her before and it was not an easy thing.
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kel so sorry to hear about the port. Is there any way your breast surgeon can take it out? It doesn't make sense that only the dr that put it in can take it out. Does the oncologist know anyone else? I think it's less of a deal to take it out than put it in. I'm sorry they're giving you a hard time. I would try to get your onc to contact the surgeon, or another surgeon since she's adamant that it should come out.
Carolyn
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Hello everyone. I have been reading and trying to keep up with posts. I went back to work, and I am having a real problem with fatigue. I stopped and took a nap yesterday midday. Still, I am reading and keeping up from the sidelines.
Today I had my port wound closed with stitches. They took it out last Tuesday, it was infected, but left the pocket open, and packed it with idoform gauze. They removed and repacked it Thursday. This a.m. they removed the packing and stitiched it closed. It was not pleasant. They have to stitch deeply to close the pocket and despite a little numbing shot, there was a lot of tugging and pain. There are lots of advantages to having it removed and closed under IV anesthesia. But it's done, and the stitches will dissolve so I don't have to make any more trips to radiology.
I also had my very last infusion afterwards. I had Herceptin. My viens are not so good since I got sick last week and it took a couple of tries, but I had it via IV. Once it was over all the nurses call in clapping and congratulating me, with a Certificate of Graduation from Chemotherapy. It was a card signed by everyone there at the clinic.
I got out the door on the way to the car, and just brust into uncontollable sobs. It's 19 degrees here and my tears froze to my eyes, but there was just such a rush of relief.....I wish it for all of you.
I will have a 6 week wash out, then I will enter the Tykerb clincal trial instead of taking Herceptin. It is an oral medication. I will also take Tamoxifen which is also oral. I hope and pray never to be in an infusion room again. and I know you all understand.
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Cal: I was told, sort of, the same thing about ports. Doctors don't want to mess with other doctor's work. I don't know if it's professional courtesy or a liability issue or what, but when I was in the hospital in Oct. and they thought my port might be clogged, they did a test sort of like an angiogram, i.e., they ran dye through it to look at it. BUT before the doctor at the hospital would do the test on the port, he talked to my surgeon who put it in and got his ok for the test! Go figure. Anyway, just wanted to share that with you so you won't think you are getting a total run-around.
All: I've had some muscle aches with this last taxotere treatment (I know it's the tax because they didn't make me do the last neulasta shot). I deal with it ok during the day, but at night when I lie down, my legs really start to ache and feel kind of weird & jumpy. Does anyone else have this and if so, does anything help? All they told me to take is Aleve or Advil. Do you think raising them up on a pillow would help. I'd love some suggestions, I'm getting tired of not sleeping!
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LadyinBama I do aleve. Some of my aches are from nuelasta but at other times it's from the taxtotere. It really takes the edge off for me.
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Good evening my chemosabes and radicals!
I have done a good job of sleeping off gross chemo!
I have an appt with a radiation onc. Did you all have to wait 3-4 weeks between chemo and rads? Just wondering. If they don't like the plastic getting in the middle, and I am encouraged to start after chemo, then I will do so but I am wondering if there is a break in between?
Calamtykel: WHAAA?!?!? Wait to get it out and it might be infected? Is it just me or are these people crazy? You have to get that out NOW. I don't understand such unorthodox advice. Geez... they need to get that out of you. Force them to pony up with an antibiotic now before it potentially gets worse. I really feel for you. You have so much verve and so many things to do, not to mention home-schooling nearly a basketball team, and you get some ridiculous nonsense guidance from these medical people that are supposed to be helping you? I would de-mand some attention on this matter tomorrow before you end up with a bigger problem and you should not have to fight for attention on this matter. Make sure they help you with this. It is no joke that you are just finishing chemo and your body not being back up to par and an infection going on....they need to fix this. Please let us know what is going on.
Eyebrows and lashes: I did not fully lose my hair nor did I lose my lashes or brows. I lost hair just about every other place and my hair just thinned. I could not keep it long, however, as the stuff that was falling out was tangling in the longer stuff that was staying. In retrospect I sort of wish I left it long and just wigged it up to cover the little bit I had left but, at the time, buzzing seemed to be the best idea. I was also secretly looking forward to seeing what would come back but it never even left! I am so grateful for these bula hats, I can't tell you!
DebJ: I cried twice since this started: once when the mammographer told me, in no uncertain terms, there was an anomalous mass in my chest and it must be biopsied immediately. Her delivery was antithetical to any sort of professional etiquette. In any case, time #2 was the morning I got the port put in...I was still getting the cycle and I got weepy. I am hoping my third cry is going to be the day they take that joker port OUT! I think Yale likes us to keep it for 1 year, however.
In any case, I am glad you are done. The fatigue is outrageous, though. Like I said yesterday, we are all in a sum-zero game in that the only we will generate is going to be exactly what we do generate and no more, no less. Our reserve tanks are non-existent right now. My heart breaks for you having to work. There is no way I could work. I slept away most of today, like 6 hours in 3-hour increments and not because I wanted to but because I had to. It is also cold here and being under my blankets watching L&O as I drift off is not awful!! In any case, best of luck to you.
TE's: I don't love these things! I am tired of having them in. As it stands now with rads looming, I might not get them out until summer = gross! I am starting to think no recon might have been better! At least they would never get in the way in the gym again! Oh well....that is my diatribe on TE's and general boob discomfort!
I hope you all have had a lovely day and are spirited and excited and singing your way through this holiday season! If not, take out pics of your relatives and say all those luscious things you might want to tell them to their face and get it all out before they arrive! It is good for the soul!!!!
GOODNIGHT GIRLS!
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Hi Everyone-
On fatigue- I'm now three weeks past RADS and still fatigued. Not as much, but it's still there. Just a report for those of you trying to figure out where you're at in comparison. Also someone asked about HAIR a while ago. My last chemo was the day before Halloween and I now have a 1/2 cm of thick-ish brown hair (my reg colour). I can go without a hat. I get looks, but I'm not "bald" anymore. My eyebrows are growing in all over my forehead though, I look like a cromagnon. Time to get in to the salon and get what's there shaped properly!!
Calamtykel- Dammmit. You'd think if one doc told you something was IMPORTANT then you could count on others standing up to get the job done. I'm sorry you're going through this. This sucks. I'm sending you a hug, but not on your port side.
Advice needed- I'm going to TARGET this weekend, this will be like the third time I've ever been in my whole life. I love Target though, b/c we don't have it in Canada. What are the best Target items? Lines? Etc? Any Target shopping advice will be much appreciated by this Canuck.:)
LadyinBama- I think you were saying you had the shaky legs thing? I had that too. BAD. I found advil and a hot bath right before bed helped. THe hot water, I imagined, relaxed the tension out of the muscles. Maybe worth a try?
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At the onc appt today I found that I will start with the rad onc appt in about 3 weeks, which is actually about 6 weeks since my last chemo (today was herceptin only) so yes there can be a delay! In my case due to scheduling difficulties over the holidays. Also found out that since I was premenopausal before chemo I will have to be on tamoxifen for about 1 year starting after rads before I can switch to an AI so that they can be sure I will stay in menopause.
Hair - I do have some hair coming in. Its more like soft fur but it is definitly there. I'm so excited about it! Does anyone else have hair coming in that is real soft and kind of fuzzy?
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sweeney - I shop at Target all the time - check the ends of the isles they have the very best deals. My hair fur seems to be my color too, maybe a little more brown than gray.0
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I am a week and 2 days past #6 last TC and for the first hour this am I was like, WOW I feel really normal today, went to work as usually and then started feeling like I was coming down with something : ( lunch rolled around I ate 2 oranges started feeling better, we will see.
I just ordered Zumba for the wii. Its from santa lol, I will start slow but can't wait! It looks fun.
Have a good week chemo sistas!!
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