August 2010...anyone starting chemo besides me?!
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Has anyone's intestines actually exploded from chemo??? I think I am on the verge!!!
I'm joking (sortof!). I am at my serious belly bloat days and foolishly ate chili (what was I thinking!). It does not feel so good! Imagine dairy cow utter not milked for a week!!!
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Omaz: I don't know how our body parts even survive chemo! Every time I blow my nose, which is about 20 times per day, there is blood. Every time. I told my onc but I don't bother saying too much about it especially after they told me that flossing and my gums bleeding has *nothing* to do with chemo. Ok, so my gums never bled when I flossed which is every day, twice per day, before chemo and now they bleed and this has nothing to do with chemo??!!? That is sort of a very weird coincidence I would say! No matter what happens after chemo I am sure they will again say there is no connection! Having said all that, you are brave for eating chili!!!!!
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I've never gone to a support group. I have ALWAYS referred to you guys as my online support group. And believe me, I reference you to others a lot!
One thing I wanted to announce today- I am done with treatment. No more chemo. No more radiation. Just tamoxifen. And I will take that one day at a time. And no doubt as my "online support group" you'll hear every gory detail.
I've just sent out an email thanking all of my friends and family and updating them on this. But I would like to say a special thank you to each of you too. It's so strange to me that I wouldn't know you if I passed you in the street, but you have become my sisters in this. And you have held me up on those days that I just couldn't do it myself. Thank you seems not to cover it, but it's all there is, so thank you.
XO Sweeny
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Ahh, Big Hug Sweeney!!! Congrats on finishing treatment!!0
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Sweeney: FINISHED?! Congratulations to you, woman! I am going to be really happy to say that some day...! BTW, a friend from this board is on tamoxifen and never had even one SE. It is possible that you will not have any SEs at all. I am so much like you in wanting my body to be drug-free again but I just don't think that is going to be the case for a long time
On support groups, I just have never gone because the few times I did in my early years, I find that people are pretty negative. I was assigned to a support-study group in college and I HATED it. All everyone wanted to do was snap about all kinds of nonsense. I guess that is what a support group is for, however! I just don't get into that format. To each their own, I guess. 0 -
Hi everyone. I have been watching and reading from the sidelines. Have been so empathetic with so many of you. I am having so many of the same symptoms and circumstances. It is so helpful to know I am not alone in this. I have a couple of people in my life that, somehow, always make me feel like a whimp. One is in our Human Resource Department. Her mom had BC, and "she never missed a day of word or was sick"......well great for her. She doesn't say it, but I know she thinks I don't need or deserve all the time I have taken off, and now that I am out of time and under the gun to return to work, I know I cannot expect any extra consideration from her. But that's that. I also have a cheerleader who says nothing but "you can do this" "just a bump in the road". I can hardly stand the enthusiasim and awesomeness....some people just don't know better though, and you have to accept that. This just is a good person who is trying to be supportive.
I completed my last round of chemo today. Number 6 TCH. I can hardly believe it. I was surprised to learn I still have to do my next 2 rounds of Herceptin and Neulasta tomorrow. I thought I was done with that too, but I have to have 28 weeks of Herceptin for my clinical study protocol. I see my ONC in 4 weeks, but after my last Herceptin I will have a 6 week clear out period, with no drugs at all. I then will start my Tykerb and the Tamoxifin, both which are oral meds. I can have my port out but ONC recommends to do it at reconstruction. I am not sure when I will have enough time accrued to do that now. It will probably be summer.
By the way, my fooby is not doing well. My TE has slipped so that it is more under my arm than centered on my chest. The PS says it will be an easy fix at reconstruction. But nothing to be done before. I am sleeping mostly on my left side (right mastectomy), with a pillow wedged under my chin then down between my breasts, allowing my fooby to rest on top along with my arm. It is a very uncomfortable situation. I can "sling" it back into place but it will not stay. It is the worst at night when without thinking I wind up on my back and the fooby just falls off my chest and slides under my arm....yuck...
And our insurance is changing from Humana to Atnea at the first of the year. It will cost about $60 more per month. Our deductible is up $1000, to $4000 individual/$8000 family. $50 copays just about every encounter type now, and basically 80/20% for any doctor. whew...I still can't find my PS or BS on the abbreviated list of providers they have forwarded to us....
Still I am done with this part of the journey and I am so happy to be done. My goal next year is to get as healthy as I can. I want to lose 50 pounds whenever it becomes safe to do so. I am wondering when my "moon face" caused by steriods will go away. I don't have any hair and my eyebrows fell out this past round....I just want to be me again...
Thanks for understanding and accepting. I have shared so much with this group. I have started attending a support group with about 40 real people, but cannot imagine being so candid there. Thanks Lizziemack for starting us up. Despite the fact we all are going to complete our therapies, I don't think this discussion should ever be complete....
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Hi Deb--I am desperately awaiting the disappearance of my "moon face" aswell. The last couple of chemos were not so kind to me regarding eyebrows, eyelashes and moon face. UUGGHH. I have also heard from a couple of people who have said----aren't you bored at home? "UMMM...not really...being that I have been in chemo for the last 24 weeks--then before that surgery". Sometimes when people say things like that, I just shake my head and think--hopefully, they never have to go through the same thing.
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Wow - it takes a long time to get caught up here. :-)
I just got back from Yosemite Nat'l Park with DH. We were celebrating our 8th anniversary and the end of chemo. I am officially 2 weeks out from my last TCH today.
Good news: I went for a 2 mile hike with DH. That is the longest walk I've done in a couple of months. I had to take an hour-long nap afterwards. (Mind you - we had done a LOT of much longer hikes in the past).
Bad news: My eyes are still watering like CRAZY! It is driving me nuts. And the cold in Yosemite just made it worse (it was around 20 degrees every day). I have a few eyelashes left and a few brows, but I can't keep any makeup on my eyes at all because I just tear it off after about an hour. SO FRUSTRATING!
Menopause symptoms: Besides the hot flashes, I don't have a temper, but I do get anxiety attacks. My mother had them all through her menopause and went on anti-depressents for them. She still takes them now 20 years later. I don't want to be at the mercy of my anxiety attacks, but I don't want to take another drug for 20 years! Not sure what to do - I do have a therapist I've seen in the past. I will probably make an appointment with her.
It is so encouraging to read that we are coming toward the end of this chapter of our lives together. I hope that those of us who are going on Tamox or AI's will have minimal side effects. I read about "vaginal atrophy" too and FREAKED OUT! My poor DH is hoping that we can have sex again soon now that chemo is over - I told him it was the LAST thing on my mind during chemo, but I'm hoping we can too.
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Lisa - I remember your description of a walk on the beach after your first chemo when you got so nauseous and had to tolerate the drive home to get your meds. Now you are all done. Hope your eyes clear up soon.0
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Deb J and Rachel- to those that belittle your experience, I say a grand and loud F!*@! you. HR reps and "friends" that offer these little helpful anecdotes will one day be faced with some sort of similar circumstance and and will, hopefully, remember how callously they treated you. This is the hardest battle I have ever fought. Any of us would attest to this. Just come on here and vent. That's what we're here for. XO0
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Lisa- still have not made it to 2 km. But it is my goal this week and I'll think of you while I'm doing it!
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Oh gosh, chemo-brain is back! Three posts in a row, sorry! "Vaginal Atrophy" - advice given to me was to use or lose it. Hmmm. I guess I'll use it.:) Easy choice there.
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Omaz I did have the bloat constipation issue on my second chemo. I made sure I started with the metamucil early this time. What a difference. I eat lots of veggies so if I don't go I really bloat up. That last time it took 2 days and I ended up with hemorrhoids. Not this time because I started the day before with the metamucil.
lizzymack1 gums bleeding even nose bleeding can be a sign of low platelets. I have nose bleeds for a few days (no gums) and both my onc and I feel its from the herceptin. I have no idea why they would tell you that chemo doesn't have bleeding as a SE. If you can't get your nose to stop bleeding then there is a serious issue with your platelets that needs to be addressed. You do not want to become anemic.
Awesome news sweeney & DebJ.
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lago - I was real aggressive with the anti-constipation campaign and it worked fine, the bloat seems to be due to something else, some other thing related to chemo/steroids. By tomorrow it should be better, I have had this pretty much every cycle.0
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Congrats Sweeney on finishing!! I am sooooo jealous. I will finish rads on December 22, I can see the end in sight and can't wait to get there!!
On sex: I attended a meeting of a local support group when first diagnosed (wasn't for me, so I didn't return). Anyway, at that meeting the subject of sex and treatment did come up. And I have to share with you guys, that there were several women who ranged from about a year to several years post chemo and they all stated that although it took a little patience and time, they reported normal sex lives at that time. So, there will be a return, or so they say, it will just take a little time. Hope this helps.
Another indignity, chalk it up to BC: I went to rads early on Friday because we were going away to a soccer tournament for the weekend. Normally my techs are female, but this time they were male. Want to talk about AWKWARD!! To make it worse, in the course of small talk one of the techs asked about my weekend plans. When I told him where I was going he shared with me that he too had a son who played soccer, just a little older than mine. Then he told me the name of his son's team.......turns out his son plays on a team in my home town, and I assume he probably lives in this town too. How embarassing would it be if I ran into him one day on a soccer field!!!! God I hope that never happens since he has now been up close and personal with my mangled boob!
On constipation and bloating: My worst memory of chemo...no matter how hard I tried I could not get this one under control. Happened every time! I am so glad that is over.
I hope everyone feels better tonight.
Debbi
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Sweeney and Deb: Woo Hoo!! Congrats! I'll have my last chemo a week from today if all goes as planned, and then on to Tamoxifen. Please, ladies, stay on the forum with us. We all still need each other. xxxooo
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LadyinBama- oh don't you worry...I'm here for YEARS! I plan to log in here on the morning of my 5th anniversary and do the happy dance with each and everyone of you. Let's make this the longest running thread on bc.org EVER.
p.s. changed my avatar to show my new "trapper" hats as suggested by Texas and Cal. I love them by the way, and up here in the Great White North they come in handy! (p.s. the hunk in the photo is my DH:)
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Sweeney: Congrats!
Very happy for you. I also have a question for you. When did you get swollen and the white pustules? Was it just this last week of rads?Sue: I have had 11 of 28 rads. I feel really, really good. I so prefer the rads over the chemo. My skin did start reacting early. I turned pink after day 3. From what I've read, most people turn pink after day 10. My onc prescribed a lotion and since I work from home I go braless and apply lotions every couple of hours. My skin has an odd feel to it right now. A dry skin kind of feel but very odd. So far I'm not more tired than normal. I'm concerned though that I'm going to have skin problems. My rads onc said "You are going to have a reaction" and that we may need to stop and take a break at the halfway point. This Fri is the halfway point and I'd like to keep going.
Tamoxifen: I too am afraid. Has anyone considered a hysterectomy instead? I did for a little bit and then decided I can't deal with more surgery. I am avoiding reading about the SE of Tamoxifen. I'm going to listen to my onc and then just take it and see what happens and not read. I obsessed over chemo and I don't want to obsess anymore.
About the foobs ... I hate, hate, hate, hate mine. I kind of wish I had decided to be breastless. But I guess eventually I'll be happy. I just was not made to be large chested and my PS is stretching me (or has stretched me I guess) to 1 cup size larger than I want to be in the end. They get in my way! By the way though, Lizzy, my onc told me I'll still have mammos because they leave a thin layer of breast tissue behind with the mx.
On exercising: I started running about 1 week post my final chemo tx. Man has it been super duper hard! And I hurt so badly afterwards (still do). Amazing what a 3 month break from running will do. But I can run 2.5 miles now. I just go a tiny bit further each time I run. And I tell myself that this is one thing I will NOT let bc take away from me. I WILL get back into shape eventually. It will take a long time but I get stronger each day.
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Ann97- Probably the last 7 days of Rads. The white pustules look like really big zits and are under the breast. The side of the breast, almost in my underarm, is brown and cracked. The onco today said that both will get worse over the next 7-14 days. It hurts like hell. He said to apply polysporin liberally for lubrication and as a guard against infection. Let the breast have as much air as possible, (it's currently 12 degrees below zero here in Ottawa!) and go braless as much as is possible. I'm a D cup by nature. Again, ha!
How are you doing? What are you seeing at this point?
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Sweeney: HOT photo with your trapper hat and your arm candy!!!!!!!! Very nice, indeed! Is that a wig under the trapper hat or trapper hat fur? I love my trapper hats! They are my new wig!0
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Ann97: I am sooo glad to hear an exercise story from the other side! That is great news about your running. 2.5 miles is a LOT post chemo. I hate, hate, hate that I am so fatigued on this stuff = turning into a mess. I have not worked out normally since before chemo. I don't blame you for getting right back out there. I live in CT and chemo ends for me right at the end of December so I am already planning my January workouts and cannot wait to get back. Keep me posted on how you are coming along. I wish you the best....perhaps you will start running 4 MILES!
Brown outs: every now and again I get up like off the couch or chair and I have what I consider a "brown out" where I feel I am headed to a "black out" but I don't get there. Has this happened to anyone else? I have to go lay down immediately when this happens and I do secretly fear I am going to pass out. Of course, just like my post-flossing mysterious gum bleedin *only* since I started chemo and that which I am told has nothing to do with chemo, I did not bring up this "brown out" situation with my docs because I am sure, again, I will be told it is not chemo-related and then I will go off like the little rocket I can be, declaring 'how the hell could that be' so I try not to go there! There is just no sense. Just let me know if anyone else has had this.
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Congrats Sweeney...0
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Lizzy - Possible your blood pressure is low? Can you check it at home?0
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Sweeney: I am just an odd color. Kind of a reddish purple. And the skin has an odd feel to it when I put on lotion. As far as breast size, I think it is mostly the stiffness of the TE that bugs me. I can't cross my arms in front of my chest - the foobs do not move. So stiff. So being larger just makes them get in the way more.
I was a large A/small B before (according to my PS, a large A, but I always wore a B cup so I say small 
. I guess I'm a C now.Lizzy: You've been so good about trying to exercise. Much more so than I was during chemo. So you'll get back to it. I used to run 5 miles daily. It is my goal to get up to 4 miles before I have the surgery for the TE to implants exchange (in Feb I guess).
And about the "brown outs" - I have always had that happen (prior to bc) and have been told it is due to having low blood pressure. Could that be it?
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Omaz and Ann: I do have a blood pressure cuff. I am going to check it now. If it is low what can I do to move it up again?! I know that sounds weird but I don't know how else to say it!0
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Blood pressure: it was 140/90 but it is probably a little high now because I have gotten nervous about thinking it might be low!!!! OH well...maybe it is dipping throughout the day. I guess I will call the "that has nothing to do with chemo" center tomorrow to see what they say!!!!
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Lizzy - my nose is always bleeding. I get crusted stuff in it and when I blow, there is always blood, sometimes a lot. It's the Taxol. (Are you on taxol?) the nurse told me this. It doesn't bother me but what DOES is at night it gets all stuffed up and is totally clogged. There is no mucus, but it's just swollen shut. I'm fine during the day at least. I'm sure it being winter doesn't help.
I'm disappointed in this day. Explanation: I felt like okay, Thanksgiving is over, my first week of my last chemo is over (it was Monday). I figured by today I should be full circle and my life would be back to normal. I don't know why I thought this - I don't know why I assigned a week for my body to get over the last taxol. The leg aches are all gone - I'm sleeping at night without a sleep aid....but it's all still there - the port's there and gets sometimes...on my mastectomy side I don't know what I did, but my rib cage in the front really hurts and also in the back in the same place. I think it must be muscular because it feels like a burn inside when I touch it and when I stretch that arm it really hurts! I think I overexercised on Friday night. I went running but did some aerobics too and lots of stretches. It was there before but that really made it bad. I'm hoping this gets better; it feels like my skin did after my surgery!
Why am I thinking life should be normal now? Because other people say to me "YAY! You're DONE!" Like now it's all over. But I feel let down somehow. My onc. warned me about this - she said "It's very anti-climactic........." Hm. I don't feel done - I feel sort of like I've been pushed off a cliff now and I'm sort of hanging there, suspended like on a Road Runner cartoon. Not sure what is happening next......
I'm trying to figure out who I am now - no hair, one less boob, no eyelashes.....not getting my period, not ovulating....not feeling like having a sex life right now. It's just...weird. During chemo, you're in the thick of it all, in "survival" mode. But what now? I spun my wheels today trying to get orders out but the tape and printer wouldn't cooperate - worked on selling online, my house was a disaster, didn't get school done with the kids, DH and I picked up 25 bags of pellets for the stove tonight in both cars, cleaned up the house (sort of), made dinner..... And I'm disappointed in myself. Why? What am I expecting? I didn't sit down all day---but I feel like now I have to make up for all these months off or something.
Not sure if it makes sense.
Tomorrow is bloodwork so back to the cancer center. Then staples for printer ink and packing tape and Shop Rite since somehow four kids went through two loaves of bread since yesterday........just mapped out the kids schoolwork for tomorrow and it's going on 11 soon. I feel thrown back into the rat race and that I should be rejoicing in it, but I'm just not ready or something...........
Anyhow - Sweeney - lovin' that trapper hat!! I have to say, I am SO happy to be doing this hairless thing this time of year! So much more fun than just baseball caps! I have so many cool winter hats now - I love them ! I wear my santa hat everywhere.......
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Calamtykel: finishing means a return to our normal lives BUT, and just like you, I started mapping out January plans for working out and studying more etc... and I totally and completely failed to realize I need about a month *recovery* from chemo. This is also why my PS won't see me again until February. Your body needs time to get back to normal. The rib thing definitely sounds muscular. The sex life...we are all in that "none" boat right now! I think you thought at the end of chemo you were done...you forgot to pad "done" with 3 or 4 weeks. If I were you I would not require too much of myself for a few more weeks. You went from walking to doing 90 in the fast lane in 1 week! Give yourself a break until we get through the holidays. I think January will be a return to normal for you. You sure got a lot done....now I have to go take a sympathy nap!!0
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Lizzy - Maybe eating something salty would bring up blood pressure? Extra fluids?0
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Lizzy, I too have heard that something salty will help. Of course we always say to call your Dr because we could be completely wrong. But it is not a bad thing to have low blood pressure so if that is what it is, I would not worry. Just don't stand up so quickly.
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