August 2010...anyone starting chemo besides me?!
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Ladybama - I find that facebook is fabulous for keeping people up to date. People are on there so often that they see my posts. It's frustrating to me; the friends who are not on Facebook and then write and want the whole low down that I have to go through all over again. I don't want to neglect them but it takes time to answer everybody and I'm still keeping up with my internet shops! =:O It will also show who your true friends are, which isn't easy. I've had a couple of friends who have said NOTHING - nothing at all regarding my diagnosis even though I post status updates. I've actually un-friended a couple of people on facebook simply because I know they've been on facebook and over the course of months have said NOTHING - no one single word of support- not a "hope you're going to be okay Kel" NOTHING! I don't understand these people but I think my life is better without them. It's sort of a "weeding out" and filtering process that really shows people's true colors and your true friends.
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I had a few friends that I was very close to. His family and mine did a lot together. We spent time together prolly 2-3x per month. Him, his wife, and kids live an hour away, so it wasnt like it was always easy to get together. When I found out I had BC they cried, and told me that they would be there for me when I had surgery, and help me whenever they could. I have talked to them maybe 2x since January and have not seen them at all. Not even a how are you doing, nothing. I have to say I was totally devistated. It wasnt something I expected. We had been through so much together, good and bad, and for them to totally just up and stop talking to me was in some ways almost as unbelievable as the BC.
Its unfortunate that I had to find out what kind of friends they truly were when push came to shove. And it has been amazing to find that the couple of girls that I work with have been more and done more for me than I could have imagined.
Do they hear the big "C" word and think, omg your gonna die, lets cut and run now so it doesnt hurt? I wish I could know what when through their minds when I told them, and what made them decide to turn tail and run. Believe me if they were scared, I can understand, arent we all.... especially when we are going through all the things that we are going through. I just cant fathom doing that to anyone that is going through what I am. That isnt the type of friend I am. Oh well, I guess s*** happens.
Calamtykel - my prayes and thoughts are with you tomorrow when you get your port. I hope you have a peace that can only come from God.
57Colleen - I hope you get the rest you need to get stronger and everything goes well with your tx.
Lizzy - Hope your scan goes well tomorrow (I think you said it was tomorrow)... I keep scrolling up and down trying to find stuff I read, I should prolly keep notes as I read instead of waiting until I have caught up.
Zenith - Im glad your feeling better, hope your up for your tx tomorrow and it doesnt have to be postponed.
JSW - It is a great site, I havent ordered anything from there as of yet. I have a few scarves I bought and that were given to me as gifts. The problem I have is that my head gets so hot and I start to sweat or I get a lovely hot flash in the middle of my work day so I end up taking it off anyways. Everyone has gotten so used to me going "bald" or "nearly hairless" for so long, they would prolly wonder why I was hiding it under a hat or scarf now. But I am so glad I have them for when it gets colder, not sure how my head will handle that.
To everyone getting tx this week, I wish you all SE free weekends and lots of energy. I am not looking forward to mine.. blah.
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I have a Neulasta question ladies: I had a pretty busy day today, walked about 45 mins this morning, then met a friend for lunch and an afternoon of shopping (by busy, I meant up and about a lot). About an hour after I got home, I noticed my legs (thighs actually) and hips hurting. In just a bit, it was really hurting, weird pain, just in the thighs and hips. Could this be Neulasta pain? I had the shot a week ago today and haven't had any problems. Does it cause delayed pain sometimes? Or is it probably just that I was more active than I've been in a week or so? Anyway, it hurts like hell and I'm about to go and take a lortab.
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LADYINBABA - I had the shot almost 2 weeks ago and today after shopping my hips and upper legs really hurt. I haven't had that pain before so I'm chalking it up to neulasta.
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Neulasta kills me. It sometimes feels like my bones are shifting and/or melting. And this feeling can last up to 9 days out from the shot. So I think you're normal. My onco said for some ppl Neulasta feels like they've been hit by a freight train. Yep. That's about right.
There are so many individual notes I want to write tonight, but I'm really pooped so I'll save it for the most important (I"m sure we all agree here...)
COLLEEN- take good care. I hope you're out soon. I'll be thinking of you. Sending you all the best of the healing cool night air up here in Canada. Rest well.
Sweeney
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Calamtykel- we all have those days. Sometimes you just want your life back as you knew it before bc and there is nothing wrong with that. This is the 9/11 memorial this weekend and I don't even know if I want to go because I don't want to upset myself emotionally too much before chemo next week. My boyfriend was killed in 9/11 as well as a number of others I knew. That day it just so happens I was working in CT. All I remember about my NY days was how great I looked and how vibrant and full of life I was and now, with this bc crap and the work crap, it can all be a drag. I totally know exactly how you feel. My plans were not to be hampered this year by this dx but rather to work on a business I have been cultivating and getting back to NY. I miss it so much. I totally understand where you are at. BTW, I don't do Facebook etc.. b/c it is like high school on the web. I do, however, understand how much a lot of people love it but it is just not for me. It is getting your feelings hurt by people not reaching out to you in your time of need that sometimes makes it emotionally safer to avoid such networking spots during this hard time.
Kimmie: thanks for the well wishes. I appreciate it. They scheduled me already to start chemo on the 14th so I guess they really think it is nothing. I am sorry you had to find out about your friends in such a way, during this time. People are so freakin' weird. I will never forget a woman at work was remarking about someone who had come back from being on disability with cancer and how she did not know what to say and how she was wearing a wig etc... I explained you say "hi." It is that simple. A lot of people are phony anyway. I remember one person from work saying she wanted to keep in touch etc.. and then never called. Finally when she wanted info on how I was doing, and I had been out of work about 3 months, she called with a string of excuses about who knows what! I just did not even return the call as another friend from work said she was only calling to get the story so she could gossip!! GREAT! Just great!
BTW, I called an extensions specialist today and she told me it is (nearly) impossible to use my own hair for extensions because they need to be sealed in protein etc... and that women and men who get them done domestically have to order the hair from abroad?! I am not sure if she was talking crazy, trying to get me to make a wig out of my fur (that she could do!)...makes me wonder!
Question for everyone: do you all see your oncs every chemo tx? I was told today I am to see my onc, get tx and then back the next day, as we all know, for neulasta. I was just wondering. I am glad I will be seeing him each tx but was just wondering if that is protocol.
BTW, Lady- I am having chemo teaching after my scan and tomorrow and will ask them that neulasta question. I will post the answer when I get home.
Have a good night all-
Your FEARLESS Leader!
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Lizzy - I see my Onc or the on-call Onc (Onc of the Day) every time I get a treatment, especially if there are any questions or concerns about me not getting the treatment. It allows you to tell them everything that your feeling (physically, mentally, emotionally)... and they can do their job and make sure we are getting through it by prescribing us meds :P Sorry bad humor, but they do want to make sure that there isnt something that was overlooked by anyone. It always made me feel better that my Onc was paying attention to my labs and my SE's.
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Yes, also see onc on chemo day and also on blood work day, but don't on neulasta shot day (day after chemo). Actually, the second time I went for chemo they drew blood too, but you-all know what I mean--
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LIZZIE- my wig specialist scared the living sh*t out of me re human hair and wigs. She told me that most of the hair is bought from India where young girls and women sell it as a commodity to feed their families. When they are bald, like us right now, they are often shunned in their communities because it is proof that their family is too poor to put food on the table.
The hair is then stripped of follicles, covered in protein and dyed to the colour of your choice- shipped off to Europe and North America. I work for an international aid organization, each year I travel to small villages in developing countries and try to seek ways for women and girls to better their lives and the lives of the people in their communities. This hair debacle made me so sad. Needless to say I bought a synthetic wig. But I think the lady you talked to today was probably telling you something pretty accurate. Sadly.
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Thanks Lizzy, I'll appreciate you seeing what he/she says about it. Some ladies on another thread told me it probably was the Neulasta, that I was feeling it as it kicks in so this must be my low point and it's kicking in.
I saw my onc at my first chemo and I'll see him the next, so I guess that is how it'll be every time. I got to lab for blood draw, see onc, then do the treatment. Next day for shot (don't have to see anybody but the nurse who gives the shot).
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Sweeney: I am not a terribly religious person but it is safe to say you are doing god's work. There is so much mysogyny and the genocide, which is normally precipitated by grotesque crimes against women, is still so rampant. It is disgusting to think of how truly incapacitated we are collectively, even as nations, to deal with those problems. Russia was in Afghanistan for almost 20 years, heavily in Afghanistan, and it still looks like "Mad Max: Beyond Thunderdome." Now the US is there having little impact also as the only operation bank in Kabul, appropriately called Kabul Bank, toppled last night on mass withdrawls. In any case, all of these areas have the same thing in common: widespread mysogyny. I was amazed to find out there are still areas in this world where clitoral removal is still being practiced. When I tell my friends I am so grateful to live here, in this country, where we have freedom and protection from the mayhem that plagues so many countries, they look at me like I am crazy. So much is taken for granted every day. That stuff on CNN is real.
When it all comes down to it, and I know there are other societal issues but, on a very banal level the reason women cannot protect themselves is because our center of gravity is higher than that of a man because, of course, we are designed to carry children. That is what causes us not to be able to develop a level of strength (enough to match that of a man) to defend ourselves. I am very glad you do the work you do. It really is giving women hope.
On the hair, I went down to a hair academy this evening and posed the question. The owner told me it is not possible because this machine that is needed to attach thread to the hair to allow it to be sewn in is not done in this country. That is also a dreadful story about women in India selling their hair and then are castigated for making a fiscally prudent choice...as if they had options anyway.
I bet these women are wicked glad to see you! How did you get involved in such an altruistic venture? Just wondering. Sometimes the stories of ebb and flow of another's life, and how we find our way to each place, is interesting.
In any case, thanks for doing the work that you do-
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Treatment two is now behind me. Uneventful but I'm soooo tired right now. Hair started shedding today so back to the wig place, maybe Friday.
I know many of you have posted timelines and told about yourself. All of my stuff is so weird and complicated. My medical stuff, my life. All nuts. Must do this tomorrow if I can find the energy to type.
Six more to go!
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Liz At my onc's office also you see your onc before each tx. I guess that is the time to talk about any symptoms and get new prescriptions, etc. They don't have me come in any other time in the cycle, no blood draws or neulasta. I'm keeping my fingers crossed that I stay healthy without the neulasta! And good for you for deciding to go back to work. I have found working to be very doable, especially now that I am into week 2 post-tx I really feel quite normal. You seem like a very energetic person and I bet that going back to work will actually help you to feel better during treatment.
Hope everyone is having a good evening and I'm sending out good sleep vibes to everyone!
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Congrats Zachsmom, you are 1/4 way through!!
Lizzy-I see my oncologist every time I go to the office, which is usually 2-3 times between treatments and on treatment day itself.
Regarding the Neulasta, the doctor told me it is a time released medication and lasts up to two weeks. I had an allergic reaction to it the first time, so I was told to be prepared as it could happen again for up to two weeks. So, that could be causing your pain.
Calamytykel-I think we all get fed up with this crap every once in a while. After my first treatment I had some issues with anemia, so I got iron, I had an allergic reaction to Neulasta, so I was taking Benadryl, then they discovered I was vitamin B12 deficient so I got a couple shots of that, and of course there were the usual antinausea meds I was on and fiber etc. I was so tired of popping pills and being shot, I just looked at the oncologist and complained that it isn't supposed to be so difficult for my body to function, it did just fine for 47 years...what the He## was happening! I still feel that way now and I can't wait for it all to be over so I can get back to normal! Luckily we have this board, where we can vent and listen to others vent..and then realize we are not nuts, our reactions are perfectly normal given the situation we are in.
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Calamity
I weas listed asd general but it actually an anesthesia that sedates you but leaves you aware. For example there three times when you must inhale deeply and hold the breath to be sure something is wher eit belongs. I was told I told some good stories while in the proceedure room. You do need someone to drive you home though. At SCCA they wont even let you go off alone in a taxi cab, you must have accompaniment. I can see why in retrospect. I felt totally awake and aware but according to my daughters reports I certainly was not. I was however reportedly very funny.
Good luck, you may be surpriesed at the simplicity of this proceedure. I say foo foo on your nutritionist for implying anything. If a person hads solid info let them share but no bait and switch when we are in suce a vulnerable position.
Let us know how it goes please
Ginger
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Calamtykel-
I'm off to get my port in a few minutes. We will get through today (and beyond)! Later.
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Hi everyone---I am a few days post chemo #2 and feel really tired and sluggish. I went for an hour walk yesterday and could have slept the remainder of the day. Went for a massage on Monday and was feeling like I could have gone back to bed. This chemo really knocks you down. I was really good the couple of days post chemo when I was on the meds--without meds--I think the true "tired" feeling sets in. My kids both play competitive hockey so I am to take my oldest to a tournament in the AM---stay and watch a game and another parent will take him for remainder. Honestly, I just wish I had more energy. I guess it will come with time.
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Re: Friends - I have a friend who I really thought was a close friend. She was the 2nd person I called after my dx (after my husband), and I went over to her house, because my husband was out of town.
Since then, though, she has bailed on me so many times. I asked her to come along when i got my hair buzzed. She arrived 20 minutes late and had to leave after 15 minutes of being in the salon, so I was essentially alone. I asked her to help out a friend who needed someone to check on her cats while she was away, and she was "too busy", so I went over and fed the cats. (It wasn't really a problem, just another responsibility and energy zapper I didn't need. I don't know what she was so busy with.) And to top it all off, she called me the week after my first chemo to say hi, didn't ask about the chemo, and when I mentioned that it was harder than I imagined, she said "Was it really harder? Or was it actually easier?" WHAT? No, it was actually harder! It's freaking chemotherapy! I haven't heard from her since until she left a message yesterday saying "hello."
An acquaintance of mine went through bc last year and told me (before I was even dx'd) that she found it really interesting to see the people who showed up for her and the people who didn't. Yeah, I do too.
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Hi, everyone. I have been following posts for more than a month without posting. Beginning to feel like a stalker. I can't begin to tell you how encouraged I have been by all your sharing. Everyone time I have a SE I check the postings. My heart goes out to all of you who have young children to care for. I had my 1st TC on Aug 26 with 3 more to follow. I had already completed internal rad when med onc wanted to add chemo. Complete shock to my system. Did want to respond to all the port postings. Not all surgeons use the local or twilight sleep. My surgeon said that the port was too close to heart and lungs to mess with and only uses regular anesthia. She said that she wasn't willing to take the chance that a patient would move with other options.
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I had second round of TCH Tuesday. I had second Neulasta yesterday. I am doing better than first time. Yah. The infusion was about one and one half hours shorter. Herceptin now only takes 30 minutes now, instead of 90 minutes first time and Taxotere and Carboplantin each took 30 minutes less. I think this really helped. I am tired but I don't, at this point, have sludge mouth, although smells are bothering me some. I drank and drank like always and did eat celery as advised by my survivor friend trying to get all this poison out of me. And I am watching for constipation vs diarrhea because I let that slip up on me last time. I guess I am just being more proactive, and feeling a little more understanding and in control. I am taking steriods for a little longer and tapering off instead of just quitting Day 3. I believe I did a major crash last time, and hopefully I will survive better. I have a great team working with me and they really listen and take action. I feel like I am being well supported and cared for. It really makes a difference and I am so sorry when I read about some of the things you others have experienced.
I have been surprised by the reactions my diagnosis has made to others in my life. I knew there would be those who would not be able to stay close. In my family I have to admit we do what we have to but not so much more. We don't lack compassion, but really just never had people skills necessary to be of any real help. It's sad and we are all learning. But my sis has really been there. I had a high school reunion the week of my surgery, and got lots of calls from people I would never have heard from at all but for that. I still hear from 2 of those people. People at work have been great, and I have two cousins who have experienced this for themselves and they have been great resources. So just now I have a mom who calls every week or so because she doesn't want to bother me (she's 80 and she's ill and she gets an excuse), and I have a mother in law whom I know for the first 20 years of my marriage wished I would fall off the earth and now is here cooking and cleaning and truly concerned for my welfare. My how that has changed. I guess everytime someone extends me a kindness now, I am so, so gratified. And I try so hard now to pass it on. Yesterday there was a woman waiting to get back to the treatment room at the ONC and she started to cry and before I could think I was up asking what she needed and banging on the counter to get her back for some comfort (steriods, yes maybe). But I do bellieve there are those who just do the best they can, and we take it for what it's worth and expect little more. We all have so much to be concerned with. Let it go if you can and look for those in your life that can and will help us though this life that we never expected to be living.
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Hey Chris, welcome--but sorry you get to join the club.
Looks like we have almost the same schedule (and dx). And profession (almost). I am an EA.
At least the timing of this was good.... lame, I know...
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lisaattheshore- there goes one of those "readers-only!" Chriscpa!!!!!! Joking!
Chriscpa- nice of you to stop by! Keep reading!
Adey- did you get your port? I got my chemo teaching today and from what I understand, as per a wink or 2, I think my head CT scan was clear...I think! Won't know for sure until tomorrow probably. I am on TAC 6 txs, 3 weeks apart. What have you decided on? Do share!
DebJ- I agree about people doing what they can. I don't want people around me ruminating about worst case scenarios either. I think part of the reason I am so positive and mentally healthy is because I don't want a lot of people coming around. People, and there understanding/experience/general feeligns on all the "C's" can be a real drag. I think less is truly more. I like to laugh about this...a lot! I know it is serious but I am not going to make it a monster by being overly serious about it. Like a teenager circa 1998, I put my 2 thumbs together and allow my index fingers to complete the 2 sides of the "W" I am making with my hands and say "Whatever!!!!!"
Well, the WHEEL OF MISFORTUNE starts for me on Tuesday!!!!! Here we go...I am off to chemoland! Geez...when they read the SE's to me all I could think was they are all the same. I will take my temperature and hope for the best! They did tell me fatigue is the worst SE with this flavor and it does get worse the deeper into txs I get so presumably I will be sleeping through Christmas and New Years! I am just glad to get it started.
Wigs: they told me to wait because my hair, as it is pretty thick, might just thin out. I am not hopeful and got my second wig today. It is really nice and quite close to my natural color. I will get used to all of this. My hairdresser told me, however, it will take me close to 3 years potentially to get my hair back to the length it is and I really don't care! I can't enjoy my hair if I am not here so onwards and upwards I go! I also learned I can donate my hair at the hospital for wigs for children which makes me very happy.
I hope everyone had a lovely day and are feeling pretty good.
Your FEARLESS Leader!
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Lizzy - glad you are cleared for takeoff. What does TAC stand for?0
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Omaz: it is Taxotere, cytoxan and ariamyacin (sp?)....they call it "the gold standard" for bc but the muga scan results have to be perfect to be able to take it as the "A" causes heart damage.0
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Omaz: correction: it is the "gold standard" for my kind of bc.0
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ZENITH, DRBEALL AND SOMANYBLESSINGS: let me know how your txs went today. Hope everyone is doing well.
CALAMTYKEL: I need to hear from you on the port!!! I was hoping you could post from the operating room but I guess NEWARK does not have a wired OR!
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ZENITH, DRBEALL AND SOMANYBLESSINGS: let me know how your txs went today. Hope everyone is doing well.
CALAMTYKEL: I need to hear from you on the port!!! I was hoping you could post from the operating room but I guess NEWARK does not have a wired OR!
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ZENITH, DRBEALL AND SOMANYBLESSINGS: let me know how your txs went today. Hope everyone is doing well.
CALAMTYKEL: I need to hear from you on the port!!! I was hoping you could post from the operating room but I guess NEWARK does not have a wired OR!
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Hi Ladies, put new AAs in the hair clippers and let er rip. Dreaded this day like crazy but it didn't seem as bad as I thought it would be. I stowed away all my styling brushes, curling irons and blow dryer and it felt very liberating. Just a suggestion, but I showered and put on full make-up before I did the deed and was not as horrified as I had anticipated I would be. I will take my 2 new wigs in tomorrow for bang cutting and styling, but I feel quite comfortable in my PEACE newsboy cap and headband. I will pick my DH from the Metro Train tonight and see what his initial reaction is, I'll still wear my cap to go get him. Knowing my always horny old man he'll probably tell me it's a sexy look for me hoping that he gets lucky. I know it's only HAIR but this was kind of the last reminder that I HAD cancer and this was a big step in the healing process. LIZZY: I'm sure we will all have a cocktail or two for you on Christmas and New Years because that's the kind of loyal followers we are, Angels really.
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Parks and Rec... (c: I've never seen it Liz. Might have to check it out in reruns. My port is in. Procedure was easy breezy. Sore now but hey I have a foreign object stuck in me (stop giggling). I am soooooo very close to deciding which chemo and will let you know. I hope to start next week too. Calamtykel- hope you're doing well. Take care all.0
