August 2010...anyone starting chemo besides me?!
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Onemonga: I find your writing hysterical! Between the meat draw looking like that of a drug dealer and your son remarking about how fast your hair grew back!!!!!! Thanks....I needed a good laugh! My godson was here a few weeks ago and I wore one of my wigs just to show his mother, my best friend of 20 years, how I looked in the wig. In any case, when I took it off he jumped back a little and remarked that he thought it was my real hair!!!! Mind you, the wig is dark brown and my hair is a highlighted, mid-shoulder blade, carmel swirl!!!!!! Kids!
Sptmm: my heart breaks for you. I felt so bad reading about your son's birthday and how you had to work. You can make it up to him this weekend. It really bothers me that you have to struggle with working and dealing with bc. I hope you have a nice weekend with your son.
Paper funnels: a good alternate is the little cone cups you might find at your doctor's office water cooler...perfect alternative! Just cut the tip off!
Wherria: Where are you?! We miss you
Iowa: I do like the new avatar but I do miss the Bret pic! Congrats on being 1/2 way through...good times, good stuff!
We do have our challenges, don't we?! the boobs and the hormones and the bc and now the fake boobs and infections and drugs and chemo and rads and super scary thoughts of recurrence and a general overall aversion, as women, to using public bathrooms and the baldness and the wigs....geez, Louise....what a road we have to travel! I sure hope something great happens to all of us soon. Alas, I digress!
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Hi All...
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Gingerbrew - I want to apologize. I never intended to diminish depression or to imply that clinical depression is "just sadness". I'm very sorry if my post came across that way. You are right, that this is not the right forum for that discussion anyway, and I shouldn't have brought it up. I'm very sorry.
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Thank you Lisa, I humbly accept your apology.
After working in the social services, with high risk clients, my entire career I was stunned to find myself the victim of a major depression that robbed me of 4 years of my life.
My mother died, some neighbor kids killed my beautiful dog. Thus the downward spiral began,I was unable to dress, bathe or brush my teeth. I did not answer the door or the telephone. I neglected my duties as president of a charities board of directors and that caused loss of income to an important cause. I slept in the day and was awake in the quiet and solitude of night. I saw a counselor for the first three years and a psychiatrist for medication the last three years. I cried alot of the first year until I was on proper medicaiton, really needed because the depths seemingly have no bottom at that point. If I had, had more enrgy then I mmigt bery well have killed myself.
I could see no colors, enjoy no food, look forward to nothing.I isolated myself from friends and neighbors. My husband bought me a new house, I never unpacked my sewing room and we were there for two years. I could watch tv endlessly not caring.My husband traveled 100% of the time the last year before we moved and I would spend weeks never leaving the house except for the doctor.
Light finally began to peek in about a year and a half ago, meds were decreased and I felt like I was a member of the human race once again. Not fully functioning, but able to communicate, to care, to be glad I was alive and able to plan. I now take a low maintenance dose of a antideperessant because once you are over 65 your chance of recrrance of depression is something over 90%. So the thought is this is a good idea. I have no side effects and I no longer feel like I am in a haze or fog. My ability to reason, such as it is, returned.
and then I got breast cancer. I am grateful I did not get it four years ago and yes I am sad I got it now.
Thank you again for your apology. I am never so direct as I was in my post. I think it is a sign of my returned health that I dared to be. Thank you for unwittingly giving me the opportuniy to be so direct and then having the grace to apologize.
Ginger
Your sister
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gingerbrew,
I agree. It was hard for me to read those posts. I've seen patients struggle with major depression, afraid to get help because they fear being judged. The saddest part is that they are, in a way that they never would be if taking insulin for diabetes.
Carolyn
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Hi Sohardbnme - Missed you, how are you doing?0
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Re depression - my husband has been having a really hard time. Between work and my illness and finances, he has been angry and depressed. He has been taking it out on us (not in physical abuse, but in lack of tolerance for anything!) We've had a couple of bad fights - because I'm not exactly in the most stable mental condition either!
He went to the doctor and is on mild antidepressents now. I will say I have noticed a HUGE change in him. He's able to cope - the constant anger he had is gone which has made our home much more peaceful. He's enjoying the kids now and they are not as afraid of being yelled at. He's more able to cope with my illness and with the distresses of work, and most importantly he's become a better driver, he tells me.I never would have suggested medication to him - I never thought about it actually! I didn't recognize his symptoms - I just noticed that he'd "changed" since my diagnosis and not for the better.
Never hestitate to get help if you have stopped enjoying life and can't put stuff in perspective!
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Gingerbrew: As someone who suffers with sever bipolar disorder (in which you swing drastically from dangerously severe depression to mania), I was a little shaky reading those posts as well, and I was grateful that you had the courage to post what you did.
I had to leave my job I loved (as a minister of a large congregation) six years ago when the worst of the bipolar began to manifest. Fortunately I had been wise enough and able to invest in disability insurance while I was working, because my disease has definitely been disabling. I've been in and out of hospitals, have been on practically every med in the PDR, but I tend to be medication resistant, and I tend to get the rarest of side effects (been true about chemo too), and I have had 40+ electroconvulsive therapy treatments, all to keep me alive and safe. I see a therapist twice a week (used to be five, but had to ease off for financial reasons) and my psychiatrist once a week. Twice during chemo, my psychiatrist has put me on the schedule for ECT's, but both times I ended up being too sick from chemo to be in the hospital! Many things can trigger a bipolar episode, including physical trauma (like two surgeries and chemo), situational things, like having cancer or having your beloved dog die in the middle of it all, poor sleep (like the kind you get when you wake up four or five times a night with nights sweats), porr nutrition (like when you can barely eat from chemotherapy), and others. Oddly enough, my mental status has not been very affected at all by having cancer. My dog's death did, however, begin a downward spiral of depression which my psychiatrist is on top of to the best of his ability, and the fatigue of treatments have triggered both depressive and manic episodes, because perhaps the best weapon I have in my mental health arsenal is staying active and out of the house. Treatment has made that harder, and sometimes I cycle into depression, and sometimes into a very agitated, racing mania. I'm lucky that my oncologist, psychiatrist and therapist are all working closely together, watching my weight, my moods, even coordinating together what drugs are safe and which ones would be riskier to my mental status. That is why I don't take the steroids. Anyway, that's enough about my history, more than you all probably ever wanted to know. Suffice it to say, I am very steeped in and intimate with the world of mental illness and the medicine that used to treat it. In large part by way of my (and my family's) experience with it, but also because, as with everything else, I always research the hell out of everything.
The posts about depression and medication made me nervous as I read them, because I didn't know what was coming. However, Gingerbrew, I have to say that I agree that there is a point to be made about the not-too-rare cases of over-diagnosis of depression, particularly in children. Research supports this. Research also suggests that because in the United States pharmaceutical companies are allowed to advertise (unlike in other countries), many people are receiving psychiatric medications (which often have serious side effects) who would benefit just as well from "talk therapy." There is a lot of discussion about these issues in the New England Journal of Medicine, the Journal of the American Medical Association -- not just in magazines like O, or Health or Psychology Today (which really has nothing to do with psychology anyway! Anyway, my point is that I am very glad you posted about your hurt and angry feelings, and I share you sensitivity to uneducated comments about mental illness or its treatment, but also that I think there are some problematic issues that culturally need to be addressed in terms of how to diagnose clinical depression, how to determine who needs what kind of treatment, etc. My case is clear. Your case sounds very clear, but there is a population out there which is less clear, which, I believe was the population to which lisainglem was referring.
As for whether this is an appropriate site to discuss these issues, I feel mixed. No this forum does not exist to discuss psycological or psychiatric illnesses. However, a fair number of our sisters here are dealing, many for the first time, with depression, and some have required medication for it. So I would hate for the topic to become taboo on this forum. So my suggestion would be that we all just be wise enough to understand that there are varying degrees of mental illness, a wide range of experience with and understanding of it (including some who have struggled mightily with it for much of their lives, and some who are encountering it for the first time because of bc and what it does to their bodes, including disrupting brain chemistry), and that we be open to learning more about it as it pertains to everything else we are going through right now. Above all, it is an issue which needs to be addressed with respect and understanding. I have every faith that this group of amazing, intelligent, and compassionate women have the ability to do all of that and to be carefully supportive of each other.
There. Sorry if that sounded too much like I lecture. I just had to respond because I I share Gingerbrew's sensitivity around this issue and was somewhat relieved to read her post, but also because I don't want us to create a climate in this forum which means so much to us all in which there are relevant topics that no one is comfortable to talk about.
Love and hugs to all my Chemosabes.
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Ginger: I am really sorry about that comment. I was worried when I read it because clinical depression is very real and very, very dangerous. I also embrace the idea that we all unabashedly share on this thread and I did not want anyone to feel isolated or judged when attempting to share about the sadness that can engulf someone going through the very problems we are dealing with in going through this battle w/bc and chemo etc...
Most unfortunately I think Lisaattheshore meant that if someone tells their doctor they are sad is encouraged to get on a med of some sort and that perhaps doctors are trying to anesthetize even a modicum of sadness with a pill. I think she meant that just because someone is a little sad that might be a healthy response to what they are going through and not require a pill to fix it. It is a sensitive topic though and we have to caution ourselves against commenting about it. There is nothing wrong with using pills,into perpetuity, if it makes you feel better.
Be that as it may, however, I am glad you got MAD! Good for you! Now that is a healthy response! Thanks to the pharmaceutical industry and major strides in understanding depression, it is very treatable and can very much be managed and reversed. I am glad you are doing better these days. You went through quite a bit and I am very glad you got treatment and are doing better now.
I want everyone to feel very free to post whatever they are going through here and not feel they might be being judged. Like I always say, we are women which means we are only hormones and water and anything can happen! Lets be better to each other than we are to ourselves.
Finally today I am supposed to go to LGFB but we are having a tropical storm and I wonder if I am going to make it!
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mlv2356: On your question about lobular bc and treatment, I would recommend that you check out the NCCN's Practice Guidelines in Oncology v.2.2010. They lay out in a pretty easy to understand way, in a flow-chart kind of format, their recommendations for appropriate treatments (including the preferred chemotherapy regimens) for all types of breast cancer. Most oncologist follow these Practice Guidelines pretty closely. In my case, my oncologist's practice requires that they follow NCCN guidelines and not provide treatments that are outside those Guidelines, but other oncs will provide some treatment variations that follow the intent if not the letter of the Guidelines. You can find them through two websites that I know of: nccn.org and asco.org. Good luck!
LadyinBama: I just wanted you to know that I am on Taxotere, and have been experiencing a fair amount of peripheral neuropathy, so it's not just Taxol. In fact, mine has been getting progressively worse with each treatment. Now, it may be the case that with Taxol the chances of it becoming a permanent condition are greater. I don't know.
Lisaattheshore: Diuretics was the word you were looking for, and you're right that when shortness of breath becomes an issues an onc might then consider prescribing a diuretic, because it could indicate that there is water collecting around the lungs (pleural effusion, or pulmonary effusion). Worst case scenario is that pleural effusion can lead (over time) to congestive heart failure, so it is important to get it checked out, though the worst case may be unlikely to happen. One issue with taking diuretics during chemo is that if you're having trouble getting food/water, or are having vomiting/diarrhea you can become dehydrated more easily. All questions to ask the doc!
To all my dear friends: Have a wonderful day; enjoy these first days of autumn/last days of summer,; get some sunshine on your faces, and if you're not feeling well, hypnotize yourself into believing that you do! {{{HUGS}}}
Whitney
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The NY Post has given us a gift today!!!! You all need to visit www.nypost.com and go to entertainment (the right link on the menu bar across the top) and on the entertainment home page there are 6 photos and behind each, a story. WELL, WELL, WELL....the Marc Jacobs ad for his new fragrance.....girls...you must see his oiled body advertising his new cologne!!!!!! OH MY!!!!!! As Wayne and Garth might say- SCHWINNG! I might have to go to Macy's and check it out today!!!!!!! Whew! That is one hot photo! ENJOY!0
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Wherria - Thanks so much for the link to NCCN - I hadn't seen that before, it's full of information! Also, I am also having neuropathy from the taxotere and using L-glutamine to try to help.0
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I agree - I hope depression, etc., doesn't become a taboo topic. I have been struggling greatly with it on and off with my treatments. I absolutely know 100 percent that chemo is affecting my moods, emotions and feelings. I have days when I absolutely cannot fathom life being happy again and I question why I'm here. I have never had those feelings before. They seem to go away though-- but now I know, from my husband's experience and by what I've learned on here that if they do not, to ask for help. I'm totally certain now that I get depressed after surgery. This port placement set me way back mentally - I feel many days as if it has broken my spirit. It was just one more thing to endure and have to heal from and it hasn't been a small thing for me - although now it's finally getting to the point to where it's not painful anymore, although it it STILL (slowly) healing.
Anytime there is an onslaught on the body it's bound to affect the mind. In our cases, it's not just been one onslaught, but numerous ones - drugs, poisons, surgeries, in some cases radiation and then finally, the possibility of hormone therapy for years, plus the waiting and being thrust into this entire WORLD of breast cancer, not to mention the day to day things - the finances and dealing with the stresses of the world around us now through the filter of breast cancer.
Actually, it's amazing that any of us survive intact mentally! =:O I tend to push my emotions off and not want to ask for help, but now I understand if I need something to get me through this, it's okay.
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Calamtykel (and everyone): if your doctors can prescribe a medicine that makes you feel better and gives you the coping skills necessary to get through a very hard time then, by all means, reach out and get the help you need. That is why these drugs are there. My friend I worked with at Lehman Brothers once told me I have natural pools of dopamine and endorphins but that is not the case; I just workout a lot. More to that point, sometimes catastrophic loss can blow you away like, in my case, I lost my brother, both grandmothers, my father, my boyfriend in 9/11, other people I knew in 9/11, my cat of 18 years, my business, my mother is hanging on by a thread for years after having suffered a massive stroke and finally my sense of well-being over the course of 7 years. I went to therapy but I would not take any drugs. I should have and it was probably my biggest mistake. Take what you need to get through and be happy that there are medicinal remedies to help your mind when it is blown over what you are going through. Reach out for help any accept what is there for you. Your mind can only take so much and you have to help it along. If all of the sudden you shock your mind and it has trouble processing as it once did, and if your mind could ask you for help, wouldn't you help it? Of course you would. Don't be shy or too much of a Type A (or a control freak) not to want to give yourself some help when you need it.
So if anyone was wondering how I take bc in such stride, it is almost like a non-event compared to the years prior! Life can be hard and throw you some serious curves. Sometimes the curves are too sharp and if you don't let someone help you, things could get worse. Take what you need to get yourself through a tough time and don't you, not even for one second, feel ashamed because you could not biologically get yourself through. If your car battery fails do you let your car sit there until the battery fixes itself or do you jump start it? Exactly. The body needs a jump start sometimes too.
Feel free to discuss everything and anything here and don't ever feel like someone is going to judge you because that will not happen again. Be well, Kelly, and do whatever you need to in order to feel as good as you can every day as we fight this draining battle together.
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lisabytheshore;
Thanks for your reply. I am on the 3rd cycle of A/C. The brerathlessness does not seem to be associated with fluid as I have no congestion or similar symptoms. I get breathless when I move around, even just after walking to the bedroom etc..
Thanks,
Sharon
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Lizzy - I like the analogy of the sharp curve, I am pretty sure I have scraped along the guard rails a number of times since being diagnosed!0
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Sharonkw: I am on TAC and I get some breathlessness. I called my chemo nurse 3 days after injection to discuss the breathlessness and she told me it is imperative I call sooner. In any case, when I was dxd in April I was given an rx for xanax. I did take it after the breathlessness started because I felt, although I was feeling breathless, that very feeling was causing a very tense state with me and the xanax worked to calm me down. I noticed a difference soon after as, although I was having some breathlessness, my nerves were making it worse. Long/short, if you don't like taking anything to calm your nerves, and the breathlessness continues, I have a sheet on my refrigerator from the hospital that tells me the 6 instances in which I should *definitely* call the 24 hour oncologist line, where I do speak with an oncologist after hours, and shortness of breath is squarely on that list. I don't think you should hesitate, going forward, to call in if you are having such feelings. Lisa made a good point as I did not know about the fluid, thus potential for pneumonia or congestive heart failure which, I guess, is why they encourage us to call!
Lisa, also from a woman who has no compunction about using diuretics (in my weight lifting days ...wink wink!) the main one is called :Lacex! Sharon I think there is another pill that has both a calming and diuretic effect? I think anyway but what do I know?!
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Sharonkw: I am on TAC and I get some breathlessness. I called my chemo nurse 3 days after injection to discuss the breathlessness and she told me it is imperative I call sooner. In any case, when I was dxd in April I was given an rx for xanax. I did take it after the breathlessness started because I felt, although I was feeling breathless, that very feeling was causing a very tense state with me and the xanax worked to calm me down. I noticed a difference soon after as, although I was having some breathlessness, my nerves were making it worse. Long/short, if you don't like taking anything to calm your nerves, and the breathlessness continues, I have a sheet on my refrigerator from the hospital that tells me the 6 instances in which I should *definitely* call the 24 hour oncologist line, where I do speak with an oncologist after hours, and shortness of breath is squarely on that list. I don't think you should hesitate, going forward, to call in if you are having such feelings. Lisa made a good point as I did not know about the fluid, thus potential for pneumonia or congestive heart failure which, I guess, is why they encourage us to call!
Lisa, also from a woman who has no compunction about using diuretics (in my weight lifting days ...wink wink!) the main one is called :Lacex! Sharon I think there is another pill that has both a calming and diuretic effect? I think anyway but what do I know?!
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I didn't want to continue the conversation any further, but I just want to clarify what I was trying to say is that depression is a very serious and debilitating disease. Sadness, or being upset, is not the same thing.
Ginger - I'm so glad that you have found your way through it and that the meds have helped. Sorry you have to be HERE, though. Aren't we all?
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And Lisa - I get breathless too - on TCH. Not so much if I am walking on flat ground, but even the slightest incline can leave me huffing and puffing. :-( It doesn't seem to be related to fluid retention either.
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Well girls, our little thread, that is barely 3 months old (October 11 is our 3 month anniversary), is about to cross 20,000 views!!!!!
That means over 6300 people per month read our little thread! That is amazing!
I know, Lisaattheshore, I am analyzing again!!!!!!! I can't help it! You see what I mean about all those lurkers!!!!!
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I've had a little breathlessness, but it's after I walk up our hill. The fact that I used to be able to run up that hill and keep going all around the property without stopping - three and a half square acres, is pretty depressing!
I talked to my doctor about it - I asked her if that was "normal" and she said "yes, we just hit you with three (at the time) rounds of chemo!" I asked her if that would go away and she said yes, it would.Also, my red blood cell count was low and while it came up again before chemo, it was still at the very low end of normal. Red blood cells carry oxygen so that can do it too. I would ask you doctor for sure, but very likely it's one of these things. Chemo sucks, that's for sure!
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Lizzy - thanks for all the info. I may need some serious anti-anxiety meds once this is all said and done and now I'm not afraid to ask for them. It is not fair to my family if I continue to be down all the time - I see that now in the difference it's made with my husband. Things are just so much calmer around here and we're not all on edge anymore.
today I went and walked in the rain. I felt like sh*t before I started, but I feel so much better now. I'm not queasy anymore or achy. It's HARD - REALLY HARD to get out and exercise. I was not able to on Days 1-3, but today is day 4 and i forced myself to just see what I could do and I was surprised. Now I'm all sweaty but it feels good.
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Port pain - the side where my port is and my shoulder have been really aching lately. I had to take a pain med last night. I talked with the chemo nurse today and it was hurting after she accessed it. She couldn't see any sign of infection. She send me for a dye test to make sure it was working properly and it was. Curiously now that the infusion is over it feels better so it could be anxiety or it could be pain from surgery too. I can't wait to get it out but know I need it to prevent lymphedema.
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calamtykel: these are tough times indeed for all of us. Why wait?! If you are getting nervous talk to your onc. They offered anti-anxiety as part of the process (at least I am pretty sure) but I already had a bottle from when I was dxd. Nervousness and anxiety and getting upset are not going to help anyone this dx is a huge bomb in anyone's life so do what you need to help yourself through. It is not forever...thank god!!!!!!
Zenith: I think someone may have made a little mistake when your port was put in. You seem to have had consistent discomfort. Today it seems like it was definitely anxiety. I am anxious on chemo day so I take a xanax!!!!!! Goodbye anxiety...HELLOOOO tranquility!! Consequently you are chatting with someone who NEVER took anything stronger than an antibiotic in my entire life until bc and now I will take just about anything!!!! I have a bunch of pain pills left from surgery and if I am in pain I will take one of those little jokers as well!!!!!!! I don't take those, however, but I don't have pain either. All I am saying is this nasty disease is not taking more from me than it has already!
Breathlessness: I workout every day and I don't care how awful I feel as I will just ride my recumbent bike more slowly and for 20 minutes at a lower resistance. I think if we think we can do what we did before our bodies are going to resist that action with some breathlessness! I don't think we can run any marathons after this!
Hair Coloring: Is it true that we can no longer color or highlight our hair after chemo? I know someone said we cannot do that anymore. I thought we could color or highlight after 1 year post chemo...does anyone know?
I hope you all had a good day, girls!
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In Lisa defense she was mostly posting to me, and how I was feeling sad and I am not use to feeling that way, I really am little miss sunshine. She was saying its ok and normal to feel that way when going through something like cancer, and yes the drs. are extra willing to throw a pill at you when you may not need them, We have all heard and see where drs. are way to willing to over medicate for many medical conditions.She didn't say anything about clinical depression not needing the proper meds. Lisa comes across as a smart, caring and class lady and she didn't lash out about anything. She even distinguishes between knowing that depression is a real illness but sometimes people get medicine when they are just feeling sad for normal reasons.
Reread this post... I thank her for her caring response to me and made me feel better, like my feelings were normal and ok. Thanks Lisa
August 2010...anyone starting chemo besides me?!
IowaSue - I'm glad you felt better. I think it is perfectly normal to have times when you feel sad or upset and not want to deal with all of this. I feel that way at times, and I don't think it is from any of my meds, I think it is because I have CANCER and it can be overwhelming. This too shall pass.
I hope I don't offend anyone, but I just think it is normal to feel sad sometimes and I think that our culture over-medicalizes sadness. I know that depression is a real illness, but I also think that being sad or being blue sometimes is a part of life, and I see so many people who want drugs to deal with the fact that they are just sad.
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I think Gingerbrew was responding to my post rather than the other Lisa's. I meant no offense to anyone and did not intend to trivialize anything. I hope that you (plural) will accept my apology.
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Iowa: Lisabytheshore made a comment in a post yesterday that said something like 'c'mon girl...we all have to get off the happy pills at some point.' This is what got people upset and not your exchange with lisasinglem. In any event, I think we all talked about it and have put it behind us now. You do seem like Little Ms Sunshine but I just hope you don't do a dance to Super Freak like that!!!!!!!!!! I hope you saw the movie so you will understand what I mean!
Hair: I buzzed it tonight....it is oddly liberating! I did not want to go to a salon and get a short cut etc.. and it was just coming out all over and then it was falling out and snarling up in the other hair and I was ending up with this huge KNOTS and I just said that is enough!!!! I took out my Conair clippers and went to town!!!!! It feels really good!! I kind of like it!!!!!!!! I am so silly! I just could not take it anymore...my hair was to the middle of my shoulder blades. Oh well....like Melissa Etheridge said 'it comes back!'
Oh girls....better days...they are a comin'!!
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Lisaattheshore: How was your tx today? I hope it went well and, as always, that awful SEs will not come your way!
Sohardbnme: you came back....albeit for 2 seconds!!!!! Good to hear from you again!
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I don't know if it was a mistake but the nurse explained that there is a metal piece coming out of my port that is close to the shoulder joint so that may be causing discomfort. I had heard nurses discussing my port on another occassion and I gleaned from their conversation that their practice places it differently. My BS did the port. I don't complete range of motion in my left arm since surgery - bmx and nodes removed on both sides. anyway gotta go deal with hot flash.....
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