Why was I stronger DURING treatment than I am now?
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Tim, or the way I read what you found out from the American Cancer Society is I have hit the ball out if the park, all those are things I have going on.
I felt like I had my mind back for a short time this winter and then it took a vacation. Hope it comes back soon.
Thanks all of you, feeling not do alone with this stuff thanks to all of you.
Julieho
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If you want more info, google cancer.org and then chemo brain.
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Janet, laughter is great medicine, especially when I laugh at myself!
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Hello my ladies,
6 month check on Thurs. Already feeling the anxiety. 2:26 am here.
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keeping my fingers crossed for you, and you had a pretty serious treatment, i am betting you are fine! its almost 7:00 at night here and time to make dinner! Can you go back to sleep for a little while?
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kathec,
Thank-you so much for your kind thoughts, but I am still awake! 3:41 now. I hate these kind of nights. I hope you are having something yummy for dinner!
Is California sunny now? my son wants to go as he says there is a big skateboarding thing there. Is that right?
You have also had some major treatment too!
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wintersocks, sending positive thoughts your way. I just had my 6 month last Friday and I know how you feel. I was constantly taking deep breaths for days before. You'll do great and just think,,, when you get the good "clear" news you get to feel great and celebrate.
I was so happy after my mammo. When I finished all the x-rays, I had to wait in the room with all the other pink smock ladies while the doctor reads the films. It can be stressful as the nurse comes back and either tells you all is well and hands you the "normal" paper, or she comes back to tell you the doctor needs to talk with you. Six months back I had the doctor come in. There was stress, decisions to make and concern for a bit. This check was simply the nurse walking in and handing me my see you next year paper. I was soooo happy and hugged her (and I am not typically a nurse hugger).
By Thursday, may you be hugging a nurse yourself!
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My Onc. checkup is this afternoon. I am most nervous about the blood draw as it is always done in my foot--I have lymphedema in both arms. The pokes really hurt and rarely do they find a vein the first time. Maybe today will be my lucky day. I have to go through it again on Minday when I have a colonoscopy. Fun times! I do feel stronger emotionally today than I have in a long time. We all know that could change ten minutes from now!
Wintersocks, I hope you get some rest today.
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Jeannie57, thinking of you today. You have a lot going on right now with the procedure on Mon. Hope you get the nurse that can get a pain free draw.
Wintersocks, have you been able to catch up on some sleep?
I went back & reread some of the chemo brain posts from the last week. Too funny.
Tim, what's going on with your tx.? Have they decided on chemo? Did I miss or forget your post or update?
I went to MO yesterday. 3 month ck up. Low WBC. She says I am always low, started low before chemo, so no worries.
Kathec, how are you doing? We have not visited in awhile, I do not see you on BCO as often, which I hope means life is better?
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Jeannie, may I drop in here and offer a few tips on those rotten foot draws? (Bilateral lymphedema here too--sigh!) I take low-dose aspirin the day before (which you can't do this time because of the up-coming colonoscopy, but it might help another time). And I do a lot of extra water drinking the day before and the day of the draw. I wrap my foot in a microwave-heated heating pad on the way to the draw and keep it on there until they're ready to draw (be careful not to get it so hot it burns!) And I keep my legs moving--bouncing them while waiting, or pacing the waiting room--because it helps get the blood moving. One thing that does NOT help is sitting waiting in chairs that hit your legs right above and behind the knee, blocking blood flow. And finally, relaxing really helps. I always insist that they do the draw with me lying down instead of sitting up.
Anyhow, hope it goes well today and next week. Be well!
Binney0 -
I'm almost through the 3 weeks of my first TC infusion. Monday is infusion number 2.
I had about 3 horrible days during the first week. After that I felt pretty good. Not looking forward to the next infusion but they have given me some meds to help. The dr is talking about only giving me 3 infusions. She has to see how I tolerate this chemo.
I'm trying to look at the side effects as a postive sign that whatever rogue cells might be in me are dying along with my hair follicles and everything else. Hope everyone else is doing ok.
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wintersocks, california is so strange lately, no winter or rain to speak of. we had a couple of really cold weeks, followed by insanely hot weeks, and dramatic temperature changes abound. it has been close to 100, and now this week is supposed to drop back down to high 70's. I haven't heard about the skateboard thing, but the only local papers i have read, were from ventura beach a couple weeks ago, when we got to go to my BF's sisters beach house a couple weeks ago. But sounds fun! i never really did skateboarding, well not fancy and high like they do know, but up until my mid 40's, i threw my body and self around in many other ways! i loved to run, climb trees, bicycle and just generally use my bod! now i am kinda afraid to, osteoporosis from ai's and chemo, but, i did get on my bike yesterday, its been 5 years! didnt go far, but the wind whistled in my ears and blew my hair straight back, on the downhills. was fUN. so maybe i will do that again today. at my jobs i had, i would always be the one they sent up the 16 foot tall ladder, and stand on the very top like you are not supposed to cause i had an outstanding sense of balance. it is a little off now because of a touch of neuropathy. So am learning again. i painted and did installations and stuff for museums and galleries, and general labor for homes. not even thinking about going back to work till september, i am trying to get back to silversmithing and beadwork, to see if i can make a go of that. i have been threatening to open an etsy store for about a year. one of these days... but, still have a lot to do to my own sadly neglected home!
holeinone, i do come to bco several times a day. i have been really depressed, and i am attributing it to the femara, and hope it will dissapate soon. hopefully making things and excercise will help too! i see you here and there!
bco is rapidly becoming like visiting old friends.....!jeanne, i was wondering why they just cant do the bloods on monday, before the colonoscopy?
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Just felt this was appropriate in this thread.
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Kathe, my Onc appt. was today and they wanted the bloods for that. Also, I will be going to a surgery center, not a lab, at a different location on Monday. Sure would have been nice, though. I do try to combine pokes when I can. Binney, thanks for the tips. I do most of those things already. Today the needle went in well but hurt so much I arched my back which made the footrest move with my foot on it. Ayeayeaye. I'll have to remember to be fully reclined BEFORE we begin next time. That's never happened before! I used to try to apply lidocaine but I never know where they will stick me. The needle moved some which made for a very slow draw but it worked. Appt. went well after that and I don't have to go back for six months. It was nice seeing my regular nurse in the lab whom I hadn't seen since chemo and have her say how happy she was for me and how good I looked. I will take these good moments and not take them for granted. Now I am praying my bp stays stable during the colonoscopy. I had a "stroke" in my right eye last Nov. and lost most of my peripheral vision, not correctable. I take a baby aspirin every night---no way I am stopping it for a colonoscopy--to maybe prevent it in the other eye. The causes are really not clearly understood, but my anatomy predisposes me to it and a sudden drop or rise in bp could bring it on. My post-cancer life is not really like I envisioned! Haha, envisioned.....but I try to make the best of it! I did take a 16 mile bike ride with hubs on Sunday, a first. I just try things and "see" how it goes....(I can't stop myself)
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thought I'd check in and say hello to all...
No one has posted in a week, hope that is a good sign...I see my surgeon tomorrow, talking about & scheduling to have my power port yanked...
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Good luck with your appointment today!
Did any of you see the new post in the Research section of the boards? There are updated protocols on long-term fatigue, neuropathy, anxiety/depression, and...something else. :-/ Memory, maybe?
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Hi everyone,
Just wanted to check in and say hi and let you all know that I read these boards more than I post on them. The support I find here is tremendous. Makes me feel a little less crazy that two years out from diagnosis - which is this coming week I am still finding I really need this help and in some ways this spring has been one of the hardest emotionally so far for me.
My two year check up is next week. I don't remember this time last year feeling so overwhelmed and scared but I had just had my last reconstruction surgery and was on IV antibiotics for a month due to all the infections and still getting Herceptin. I think somehow being "in treatment" is a good distraction from facing the emotions of this disease.
Now, all is done and I am so scared and having all these flash backs to that May mammogram appt when I got the call back. I had mammogram call backs before in the past, in fact just the privious July they called me back after my breast MRI on the left side to "check" a lump. Turns out that same lump that they said was okay in July was now much bigger and cancer. Anyway, when they called me back for the first time I wasn't scared that May, in fact I was a bit annoyed and thought that they had just not compared my mammogram to the MRI taken nine months earlier. But, they insisted I come back the next morning for another mammogram and ultrasound "if needed". I really didn't worry and went in and as I entered the mammography room and saw my mammo on the screen with the lump circled my heart sank. I said to the tech, hopefully I can get this over and go home and not have to stay for my ultrasound which was scheduled for later in the day - and she said - "oh you will need to stay" and I knew right away.
It was just a week before my youngest turned 18, two weeks before my whole family came home to be together for his high school graduation and my life and "plans" for our summer all changed.
Now, two years later I find myself so scared. I hate making plans, my life is so different than it used to be still almost on a daily basis. And, my mother who had five different cancers was diagnosed every two years with a new cancer. Ugh - I know my treatment was more agressive than my Mom's, I had a bi-lateral mastectomy, chemo and Herceptin but I am so anxious.
Plus, going for check ups never really leave me feeling okay because all they do is listen to my lungs, poke my abdomen, take my weight, blood pressure and pulse and send me on my way. I get that scans have shown they don't provide better results in reoccurances but sometimes I just want one so I can feel like I really know I am cancer free.
Anyway - I just needed to dump this all. You guys are such a help to me and I know you get it.
Hope you all enjoy the three day weekend for those of you "state-side".
Take care,
Julieho
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Julieho - I could have written your post - almost every word is exactly the same way I'm feeling.
Mine was found on routine mammogram in the same spot where the previous one had declared "just a dense spot, nothing to worry about".
I was not given the option of BMX (to be honest I probably wouldn't have chosen it if they offered) so I still have to get mammos on the one side. It's stressful all right.
Physically, chemo made me weak and I'm getting more and more frustrated that my strength just isn't coming back.
Some days I'm angry, some days just sad, about all I've lost. It doesn't help that people say things like "be thankful you're still alive" and "you just have to move on and find the new normal". Those things may be true, but not helpful. We can't just tell ourselves to feel better.
I don't really have any answers, just want to tell you I understand....
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julieho, we do know how you feel! I had a diagnostic mammo last month and I was slightly freaking out every day before the test. August will be 3 years for me, but 6 months ago they gave me a bi-rads 4A and wanted to do a biopsy. Something in my gut said NO. I felt like the radiologist was covering her ass more than caring for me so I took a pass. When the mammo came up last month I was taking deep breaths and wondering what would I do if there were more classifications, etc. When the mammo came back with "all was well" I felt like I hit the lottery. I was so happy I listened to my gut and skipped the biopsy. Most would not have. I didn't want to risk lymphedema and I just wanted to keep my life cruising along since everything has been going well for a bit.
Please go ahead and "make plans." Life doesn't have to be that different except maybe a small concern of cancer every so often. If you spend too much time thinking about it, you will have wasted that very time you could have enjoyed! That is time you will never get back. P.S. If your treatment was very aggressive and both breasts are gone... I'm not sure you really need to spend the time worrying. Seems to me you are good to go compared to many others out there who may have skipped chemo or still have their breasts.
I guess I am saying the only way you can feel cancer free is to have faith that you did all the right treatment and move on.
Wow, I hit post number 1000!
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Rocky - I'll be three years in August too. For me, everything comes in three's. Three days to kick a cold, three weeks to turn a corner after DIEP, three months to stop craving cigarettes (ancient history now), and hopefully three years to stop thinking about cancer. I know it's not that simple, but I hope it becomes only a little part of my life and not the thing that I think about every day.
Julie - Man Plans, God Laughs. Have you heard that saying? Plans fall through all the time.
But not planning something takes away all possibility. I understand how you're feeling though. I had a hard time making plans too, but the monster that we're dealing with is often fear of the disease, rather than the disease itself. I turned down a lot of invitations for a 'just in case' or the 'I have to deal with this instead' attitude. But there were also times where I said 'screw it, I'm just going to go for it' and those are the things that kept me sane. I've been determined to create good memories amongst all the treatments, cus I don't want to look back and think that I spent the last two years having my life dictated by treatment and fear. That said, I'm a big fat hairy chicken a lot of the time and tend to take the safe road. Luckily I have a lot of very plucky friends who won't take no for an answer and have been my shoehorns when I've been stuck. Some things have fallen through, and some things didn't go well (meltdowns and exhaustion) but there was so much more good than bad.
It's possible that your'e going through a super rough patch. Could be that spring is your trigger. Or any number of other things. Everybody is so different. But I hope that it's temporary rough patch and that you find your way through. And keep coming here to dump out your fears. It's good for you.
By the way - there were times where I've felt truly crazy. Less so now. But I found that the less I struggled to be 'back to normal' the calmer I became. I've stopped trying to resist crazy so much. And I've started talking about it. In doing so I've discovered that most women ( BC or no BC) are all a little nuts.
I wish all your crazy and no crazy ladies a wonderful Sunday.
Janet
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Great post Janet. I just passed my 3 years since D Day (Diagnosis Day). Thankfully there is and has been this wonderful thread to get support and release the emotions/challenges/frustrations (and happiness) during this time. Happy Memorial Day everyone. I pray that each of us chooses to make memories now instead of waiting until...... (for "me" it's to lose this weight first, find my life's astronomical purpose, decide on prophylactic surgery.....the list can go on and on).
So much love to all of you, Purl (Debra)
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Hi All,
Lovely to see the old faces checking in. So many moving beyond that awful just diagnosed/treament stage, measured in years now rather than months. I am nearly 2 years post dx now. I am still not sure how I now feel about the past 2 years, it is starting to become a more distant memory, however I still have to remind myself that I am a person who has/had (never sure of that one) cancer. The word still jumps out at me, whether I hear it or read it. It still has the power to shock and frighten me loads. Does anyone else feel this way I wonder?
I still remain awfully depressed from time to time (and am still on industrial strength anti-depressants) I really still feel I couldn't get through without them. I don't feel any shame in that. I would so much like to feel that I am not still in survival mode, but I think I still am and not just from cancer. When do you suppose we get to feel like we are not hanging on by our nails?
Purl or Debra, I have actually lost half a stone! I have been determined to get rid of the excess weight, but it is so so hard to diet. I did a lot of comfort eating and drinking as I stumbled from the breakdown of my long term relationship to losing my home, to cancer, to the breaking up my 3 year relationship. I am now single.
My youngest son is now not far off 17 and he was 14 when I was dx (I think that was the worse part for me - I truly thought I was going to die that year). My last check was last week and I have been given the go ahead to start the reconstruction process so I am now awaiting my referral. That feels like it should be the end point, being re-built, however I don't think it is psychologically, physically or emotionally.
How much we have all been through. .
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Wintersocks: Hello. Good to see your name.
I had to Google “weight in stones” because most Americans have no idea what this means. Great news on your “half a stone” by the way. I am carrying a couple of boulders over here. Thanks for the new word. I like the sound of “I’d like to lose 3.57 stones” instead of “I’d like to lose 50 pounds”. Much easier coming off the tongue.
I agree with you about the word cancer. It’s interesting that when, for example, I see a commercial for a Breast Cancer Walk or anything cancer related, it doesn’t really register that “I” had cancer. I did and I lost a breast and I had treatment and I’m changed, but I still haven’t come to terms with the word. Maybe because when I lost my mom when she was 36 (cancer of the parotid gland, weird) Cancer was a forbidden subject and it mostly meant the person would be dying soon. I have not gotten used the pink parades and probably never will.
Your kids have one amazing mom. As you proceed with your plans (rebuilt as you put it) know we are all here.
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haven't seen anyone post here for awhile.
I just had a question for all of you. I just saw my oncologist for my two year visit from diagnosis. She asked a few questions, did a very small physical exam which consisted of listening to my lungs for three seconds and feeling my upper abdomen briefly. Never checked around my collar bone, throat, armpits or even looked under my shirt. I had a bilateral mastectomy but no lymph nodes were felt, and I had no blood work or anything.
She said she will see me in six months unless "anything comes up". I asked her what specifically was she referring to, how would I know "if anything comes up" and she said a new and persistent pain, cough or shortness of breath or abdominal pain.
I live with pretty awful osteoarthritis and fibromyalgia since I got done chemo, (they all seem to think these new issues are unrelated to my treatment). So pain is somewhat hard to measure.
Anyway, I get that scanning for metastasis has not proven beneficial without symptoms but I am surprised the physical exam and no bloodwork etc was how they "monitor" me. Honestly it wasn't the least bit reassuring to go and I sort of feel like if that is all that is involved why don't I just see them every year or so and just call if "something comes up".
What has been your experience? Also given my family history and the rare gene mutation I am much more concerned about new cancers popping up than I am metastatic cancers.
Oh well, two years out and I am still a but if a nut job. I hope the fear goes away soon, with the daily pain and fear it is not a great way to live but, as my Dad said often in his late 80's when he complained about his health....it beats the alternative. 😜
Hope all of you are well and busy with spring/summer finally arriving.
Much love,
Julieho
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hey julieho. yeh, i am another one of those annoying women who has various and sometimes extreme aches and pains, after, but supposedly unrelated to, treatments. they are the ones living in denial, i think. i am surprised they arent monitoring your blood, any way, cause some of those tests reveal what is going on with your bones, lungs liver, etc, even if they arent "tumor markers, per se, they do give a window to your inner workings.
almost two years out from dx for me, and i am more of a nut job than ever! you are not alone now, several other women with about our same amount of time, are in that same headspace, too.
they barely look at my brests, and certainly do not do even a tiny bit of a good palpation to 'em. not deep, not mid level, and not all over.
i had had lymphnodes, you may remember, on cancer side enlarged a few months back? well, if anything they are bigger and harder than ever. and no-one seems interested in them but me. i do have a new bs, i had to get rid of the old one, so how can any of them know what they are supposed to feel like. i do get bood tests every 3 months now, and finally got my first after treatment breast mri. and i am supposed to have my first follow up pet/ct scan, and only because i finally asked my onc, if i was ever going to get one? because i was wondering if iwas really stage four at the begginning, because of right renal uptake, and lung nodules. makes me nuts. its like, i want a second opinion,now, is it too late? ef this carp.
i am beginning to get a little energy back, finally. i still have this topic in (ugh) favorites. take care. kathe
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Julie, at my checkups I get blood work done and my lymph nodes in my neck and armpit area are checked. My lungs are listened to and the skin on my new boobs is examined. I had a skin-sparing BMX.
I feel like I am really starting to move on. I get nipple tattoos on Friday and I'm ready to put this behind me as best I can. I know it won't be easy but I am going to try.
God bless you ladies!
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julieho, I am just about 3 years out. I am still seeing the MO every 3 months with blood work done beforehand. He checks the boobs, asks me what's been going on physically and emotionally and then I am usually on my way. Six months back I had mentioned some pain in my hip (it was really my leg and my chemo brain wasn't exact). He sent me off for a whole body bone scan to check for mets. Even when I called the office back and said it wasn't the hip, it was the leg, the test was still on. All turned out well, but it was a bit scary. If you really want the scan for mets... just mention hip pain and off you will probably go too :-).
Also, I know for a fact the most of my physical issues are a result of chemo and rads. I never had a physical issue, other than some sniffles, and then after cancer treatment it seemed like one thing after another. The worst is that every time I have an ache or pain (or even my kids have an ache or pain) I get scared that it will mean surgery or be something permanent. Cancer left me with the feeling that we won't always heal from stuff. Oh well, better than not being here at all. Oh ya, I still see my BS once a year. He's the one who orders the mammos and now that I have done all the 6 month screenings/follow-ups, he says I can do a regular diagnostic mammo next May. I thought I was done with him, but he says he will follow me for 5 years. I am cool with it since I like him and my OB/GYN who used to order the mammos took a few years off (during my treatment of course). BS is a nice guy so I feel cared for. Hopefully MO will go to every 6 months, but since I don't take Tamoxifen, I think he wants to keep a closer eye on me.
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I'm almost 2 years out and I see my MO for blood work and a breast exam every 3 months. I take Tamoxifen and I too complained about hip pain, I had a ultrasound to rule out blood clots, a hip x-ray and a cat scan of the pelvic and abdominal area. No bone mets Thank God. I need to go to a Neurosurgeon because I think my problem is a pinched nerve caused by bulging discs in my back.
If you want testing done ask for it.0 -
I return to the rad oncologist in February, brief manual exam and questions. In August I go for mammo, blood test, and manual exam/questions from the med onc.
The blood work does not include looking for tumor markers. I have a friend who goes to another facility, and they caught mets to her ovaries by her tumor markers.
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Hi Ladies, Just found this thread. I completed radiation on May 20th. Saw my MO last Wednesday (third visit since I was diagnosed). At what point did your MO examine you and start ordering tests. I know I had a very small tumor and I got to skip chemo with an Oncotype of 8 and no lymph involvement. We just chat and then he wrote me a script for my Arimidex. He made a comment on the 1st visit about not ordering a PET scan to spare me from extra radiation. And one of the nurses for my RO said they don't usually do blood work unless you are on chemo. I think I am either having a fibromyalgia flare or I over did it weeding in my garden. But then in the back of your head is that nagging fear it could be something worse. I have really had pain in both legs, knees, ankles, etc. so I haven't started my Arimidex yet, as I am afraid of potential SE making me incapacitated on what is going on now. Did any of you have strange muscle aches immediately after finishing Rads? Before your HT? I guess maybe it could be the tension I've had finally registering with me now Rads are over.
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