August 2015 Chemo Group
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Musosgirl, you got me: I teach writing of all kinds (first-year writing, creative writing, professional writing)! I can't even imagine teaching long division. How old are your kids? What kind of time commitment is homeschooling? More power to you. I don't think I could do it. I'm good with other people's college kids, though.
In other news, I've been feeling really low--a combination of angry and depressed--lately. I want to blame the Zoladex, but I wonder whether others of us are having similar feelings. It's hard to explain; I just feel really alone, and I wake up in the middle of the night and worry about various things. . . . I'm seriously thinking about giving Effexor another try, though it didn't seem to agree with me last time. Thoughts?
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Kate, I am sorry to hear that you're feeling low. I had my survivorship meeting last week and told the social worker that I just feel "blah." I am tired. Tired of not sleeping well. Tired of aching. Tired of looking frumpy. Just tired.
I am sure what we're feeling is normal, but that doesn't mean it doesn't suck. One thing that the social worker said that stuck with me is that I need to stay as focused on my care now as I did during treatment. We didn't miss a chemotherapy treatment, and we shouldn't miss doing what we need to do to take care of ourselves now.
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oh geez I thought I'm the only one... I've been feeling really off this week. Not sleeping well & not going much walking. Although I thought I know the trigger, but maybe it's more than that? I mentioned few days ago the Worrywart said something that got on my nerves, so here goes:
Sunday I wore a peacock blue dress with a topper (bright yellow cardigan). I have wore these many times before. Sunday after Mass at the coffee table outside (I also have a hat because of the sun), the you-know-who suddenly said, "how old are you?" "same as you." "then you should wear something more contemporary. more your age." <what? bright colors only for grandma? blue is my happy color>. And then... "More feminine."
WTH? I told him he's crazy. one of the choir elders (we are like the "kids" in the choir) joked, "then take her shopping!"
Every time I thought, "nice, calm & peaceful" then I jinxed it by saying that. I'm better now, but yeah.. MEH...
VickiRides Thank you for sharing what your worker said, have to focus working on this "In Health" part
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I have been so sad lately--but I was blaming the Effexor. Or the hysterectomy. Whatever. But maybe it is timing for all of us? Took my last Tamoxifen pill tonight. Making my switch back to Paxil over the next three weeks and then will start an AI. Don't have any idea which one he will choose.
Superius, I am sure he didn't mean it the way it sounded. Men are terrible at wording what they want to say. I think your dress sounds lovely.
Kate, I will admit I am not overly fond of little kids. I miss MY kids being babies and toddlers, but have little patience for others. Teaching them to read and basic math is hard--I was licensed to teach secondary history and math--this elementary stuff is for the birds! But we are at a fun stage and I am looking forward to a good year. We had a rough year two years ago, and a non-productive year last year, but this year is shaping up well. If I can just get my energy back and these incisions healed properly... I made spreadsheet schedules and feel better about all of the activities--not so frantic. We did double our activities but it is doable. The actual daily lessons on my end will take about 4 hours total each dayfor a 3rd grader and 6th grader. They do the same science and history but I modify assignments. I really wanted to start a foreign language this year but I think DH is right--it's too much too soon after the year from hell. K and 1st grade took 30-60 minutes a day. That was awesome!
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I'm also having a rough time. My youngest just left for college, so I have an empty nest. And I'm in great physical pain 24/7 (from Herceptin or chemo or Femara, who knows).
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Maybe it is a phase at the end of treatment and beginning of a new life. I know I should feel energized and excited to be done with Herceptin. I know I should be grateful to be alive. I tell myself to savor each day and to find little joys in it. BUT I find myself wiped by the end of the day. I find a lot of moments that I feel inexplicably sad and just down. This last two weeks I have been more angry than my entire treatment. Usually I Ride my bike for hours when this happens but my wrists are so damaged and my core/chest is week so I can't stay on the bars.I need to find some physical ways to pull through this and keep focused. I have thought of trying Effexor but my feelings are more anxiety than depression which is wierd. I feel impatient to get on with my life but overwhelmed at the redundancy of it all.
Musosgirl If you get the choice start with Femara. I had far less side effects on it than I did no Arimidex. I really regret ever being on Arimidex .
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So sorry so many of us are having emotional dips. I'm doing OK (though I had a dip a few weeks ago and didn't tell you!). It will be up and down for all of us I predict.
That 'cancer year 1' is a very protected space I guess, with soooo many visits and tests and treatments. We've now been sent back into the big wide world and although it hasn't changed much, we have!
Hang in there ladies!
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I'm sorry so many of us are struggling. I have felt sad the last week as well. Just the 1 year anniversary of my first chemo just makes me feel sick to my stomach. Next is the anniversary of shaving my head. I have also just had another friend Dx with BC and she is having a BMX on Tuesday. I have gone through a wave of emotions since her Dx. I am so sick of cancer already. My dad also was Dx with cancer last week. He is having a CT scan tomorrow and meets with the surgeon on Monday. It seems everytime I turn around it is someone else.
Fuck cancer.....
I have signed up for an 8 week online course. It is called Wellbeing after Cancer. I am looking forward to working through some things, and having the tools to cope. I just feel "Stuck". My body hurts, I can't loose a pound and I can't remember shit! I have been going to Pilates which has been great and has helped with some of my body issues. I just need to get past this whole Cancer show. I know I can do it, I just need to refocus and move on
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can't remember shit! ✋🏻 yep. Memory is shot. Fatigue, hot flashes, incision pain... But the memory thing upsets me the most. My word recall is so slow and it makes me feel so dumb
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Oh yeah, the hot flashes from hell. They just don't seem to get any better. Especially if I have a glass or 4 of red wine. Why stop at 1?
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Dee, what's the online course? Sounds like quite a few of us could do with signing up!!!
So sorry to hear about your friend and your dad.
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MsBrompton-unfortunately this online course is only for Canadians. It is part is a study offered by the University of Regina. I stumbled across an article on it in our local newspaper. It is similar to a course that was offered in Australia that they had great success with. So they are wanting to see if they have the same success with Canadians.
For any Canadians who are on this forum and my be interested I have included the link. I am looking forward to getting started
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Dee, I'm sorry to hear about your friend and your dad.
For me, I think the hardest part is the constant pain I'm in & the acknowledgment that this might be as good as it gets. If I live long enough, I've got 9 1/2 more years on Femara, and I think it's the Femara that's causing me such agony. But it's better than taking nothing, so I just swallow the pill every day and try not to think about it.
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My mum's 90th birthday party today! I finally told her I'd had breast cancer last week. She is a bit grumpy with me for not telling her sooner but I said it was only a really small cancer so I didn't want to scare her. She seems OK about that. PHEW. But I also had to tell my brothers, who are now treating me very strangely. Oh well...
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I wish I could convey how reassuring it is that so many of us are experiencing these things. I didn't even want to post how I'd been feeling--didn't want to bring the group down--but . . . wow, ladies. I guess we're gonna come through for each other time and time again, aren't we?
MsBrompton, your brothers will adjust. I'm glad that your mom was only slightly grumpy with you.
JenPam, does exercise help? Can your MO try a different AI for a while and see if that works? Or maybe switch to tamoxifen? I have minimal SEs on tamoxifen--I'm convinced most of what's going on with me is Zoladex-related.
Dee, I'm sorry to hear about your dad and your friend. Fuck cancer, indeed.
Superius, worry wart misspoke, and he probably feels bad about it now. I'm sure you looked lovely.
Exercise Guru, losing my physical prowess has been really hard for me, too. I'm finally back to walking 2-3 miles a day, and I go to the gym 2-3 times a week for the BC classes, but where are my muscles? Gone, that's where they are.
Dee, I hear you on the hot flashes. I go back to teaching (not online! Yay!) on Thursday, and I'm wondering how I'm going to handle it when I break out into a gigantic sweat in the middle of class. . . . I also hear you on the wine. I've been drinking more than I should, especially given my slightly wonky DEXA report, and plan to cut back again.
I think my big thing--let's go ahead and call it a problem, since that's what it is--is the whole grand narrative that goes like this, "oh, you have breast cancer? I'm so sorry. You'll be okay. It's just a year of hell, and then you'll be good as new." HA HA HA. Nope.
I'm not good as new, not at all. I've lost strength and bone density. I feel old and unfeminine and undesirable. I have no libido. I don't sleep well. Musosgirl, I, also, can't remember shit--I have to write everything down, or it's gone forever, and I used to be smart. I wake up in the night and worry about things. I worry about things during the day, because I've realized that I have absolutely no control over most things, and it's been a pretty damn rude awakening. I'm alive--but I want to thrive. I know that every single one of you knows what I'm talking about.
So, Dee, it's on you to share what you learn in that class! I'm starting a clinical trial soon in . . . wait for it . . . reflexology. They want to see if we can beat the depression (is that what this is?), anxiety, and fatigue with reflexology and meditative practices. I'm all about it, especially if it works.
I should add this: I honestly think it's a form of PTSD. I was trucking along just fine there for a while, until that damn DEXA came back how it did. . . . And now Facebook keeps reminding me of what was going on last year (I looked a lot worse than I thought I did at the time). . . . It's triggering. Last week I seriously considered throwing in the proverbial towel with Zoladex and tamoxifen, but then I remembered the stats.
Keep. On. Trucking.
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Coincidentally, I was also feeling down and wanted to check in to see how you ladies were doing. It seems a lot of us are going through some emotional things. I definitely think it's a form of PTSD and it really seems that even the most minor of things kicks it off. Dee, I wish we had a class here that was similar, I would take it in a heartbeat. I'm also really sorry about your dad and friend. FUCK CANCER.
I think Femara is causing some issues with me that I am now starting to notice after being on it for almost a full year. My left leg is tingly and I'm having some lower back pain. Of course my mind has gone to the dark place so I'm just overall having a tough time dealing with the possibility of any additional testing, etc.
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Dee, I am sorry to hear about your dad and friend. Fuck Cancer.
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It sounds like we're all still having a rough time. My last hercepton went ok, but then we went off on a driving/camping vacation the next day, through idaho, wyoming, yellowstone and tetons. It took a lot out of me, and I was sick for a few days. At my last infusion my nurse warned me not to get my port removed too soon. I was too alarmed to ask how long she thought I should wait. I'm ready now, although I'm so done mentally with going to the hospital. I still have to have my first mammo since my diagnosis. I'm stalling on getting it done. Scanxiety.
I do see bits of hope. I'm not quite as tired all the time. I've been working out and some of the weight is coming off. I'm done with infusions. It's been a surreal year, my birthday is the 4th, and I'll be glad to kick 53 to the curb and get started on a much better 54th year. xo
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Kate, exercise doesn't help, but maybe it helps me stay a bit more limber. I try to walk on the treadmill a few times a week (used to be more often, but I'm too sore these days). I keep telling myself that exercise is important to lower my risk of recurrence, but frankly the pain makes it nearly impossible most days to get up and move.
I could try a different AI, but Femara has the best reputation for fighting my particular locally advanced cancer, and I want to keep on keeping on until I can't do it anymore...at which point I'm open to trying something new. Most days I'd rather be in pain and still taking the damn stuff.
Lately I have been open with my friends and family about the terrible SEs, and I'm unsure whether that's the right decision. Likely most people want to hear "fine" when they ask me, "How are you feeling?" I'm tired of acting like cancer is done fucking up my life.
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So sorry to hear about all the side effects you guys are having. Because I'm ER- I don't get all these drugs (but as a result my prognosis isn't quite as good - so I guess it's swings and roundabouts).
Had my mammogram and ultrasound today - both normal. I should be elated but came home, cried, and went to bed for three hours. Was absolutely exhausted and felt very traumatised to be back in the very room where I had the suction biopsy that led to my diagnosis 13 months ago. I'm sure we've all got a touch of PTSD here. As you said Kate, this narrative of "a bad year then you'll be just fine" isn't quite the full story.
Off for a week to a cottage in the Lake District. Mornings walking, afternoons writing (work project).
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Nice to read how everyone is doing. I got through Chemo and cancer relatively easy, but this aftermath shoo wee... I developed chronic uti's which then created kidney stones. I was hospitalized twice with sepsis where I thought I was passing stones but the kidneys were infected and high fevers sent me to the ER. I now have 2 nephrostomy tubes in my kidneys. They were put in after my last 10 day hospital stay for sepsis. I started chemo aug and was having chronic utis beginning in november, but they say its not related. I never had a uti in my life before then... but if you are feeling bad for me now just wait it gets worse... I came home after my 10 days and a day later was back in the ER with leg pain. I had a large clot in my leg and 2 in my lungs. So scary, I showed 0 symptoms of 2 big clots in the lungs... Had I blown off my leg pain, I prob would of died. So now I am not allowed to take tamoxifen ever again and I am on blood thinners indefinitely. My last herceptin was july 25 and I have not had a minute to even celebrate it because of all of this.
What is there besides tamoxifen? My ER was like 90% , it was really high so I need something but it has to not have a clot risk. I was also doing alright energy wise but my stamina is 0. I huff and puff walking 20 yards. I was sent home from the hospital today and still have the clots in the lungs as they can take weeks or months to resolve so I hope it gets better when they are gone but man oh man this has been a summer to remember. I have spent it all in the hospital it seems. I am still here though hoping to get this stamina up and do what I got to do. They sure didn't lie when they said its not over after treatment ends.
Hope everyone is doing well. Better than me lol...
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Oh Gooseberry, so sorry to hear this! How absolutely awful for you. But you are a seriously tough lady or you wouldn't have survived all that. According to my onco, what drives HER+ cancer is HER, if you see what I mean. My tumour was ER- but androgen positive, and I was asking about anti-androgens and she said "anti-anything is pissing in the wind, what HER+ needs is Herceptin, and if you've completed the course of Herceptin and you're stage 1, you'll be fine". So (as an amateur at all this...) I wouldn't worry too much about having to stop horrible Tamoxifen. Your cancer cells have been zapped already.
I guess the clots will clear eventually, leaving you less breathless?
But the main thing is you're still with us lady! *hug*
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I just finished my fourth month of Crossfit, started month five today. I feel so much better. I have dropped off most of the belly, calf, thigh fat that I gained over the months since surgery June 2015. I have much better stamina and psychologically feel pretty darn good. I have only a couple of tamoxifenish side effects. That means side effects I can't blame on anything but lack of estrogen in my body. So my right and left pinky knuckles are quite sore and painful to the touch. Doesn't hurt to use my hands, just to squeeze them or shake hands. I also find it takes an awfully long time to heal from small nicks or bruises. I have a sore spot on my left calf where I bruised it in July, the bruise is finally gone, but the area is still sore too the touch. And my hair grows obnoxiously slowly. Finally I really have a hard time getting a good night sleep and getting up in the morning. Once I'm up, it's good, but it's getting up... I've been on Tamoxifen since January.
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Well, I made it through another birthday. All my guys were sick this weekend so it turned out fine that my mom and sister took me off to Branson. I overdid it though. Too much shopping and being up and about, but no pain and lots of laughs. I didn't have to carry a thing, benefits of the 15lb limit. Still having lots of recovery issues from the surgeries, swelly belly and constipation and one small part of a large incision still open. I was finally cleared to take Ibuprofen so I stopped the opiates--had a headache all weekend. My GYN cleared me to swim, but my PS's PA said no. We tried anyway but the pool was freezing. It was so good to get home to my guys! They had presents and homemade cake waiting for me! Jammies and movies all day today. One thing is fairly certain: 36 will be far better than 35!
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Molliefish-- my hair is growing obnoxiously slow too. I don't have nearly as much as the pics of people I see 9 months out and the area by the temples... I am not sure its growing at all...
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thx ms bompton. I never wanted to take tamoxifen because it raised the blood clot risk and I have the lesser MTHFR gene mutation that raises my risk even more. But we discussed it and decided to go ahead and now I had a DVT and 2 large pulmonary embolisms. I am going to see about not worrying about it, how the recurrence rate changes not doing hormone therapy. Shoot I told her she could take out my ovaries but she thought I was crazy lol... from memory my cancer was ER 90 and PR 7 something like that, estrogen was really high so she is focused on that but I hope herceptin gets me out of taking anything. Thanks for the info
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gooseberry, you could try ovarian suppression and one of the AI drugs. Research looks promising for that route.
molliefish, Crossfit FTW! I've been working out in earnest again, too--can't quite post the same numbers I used to, but I think I'm in better cardiovascular shape than I ever was. Exercise is like a miracle drug for me. On that note, I'm off to walk the dogs.
MsBrompton, any good pix of the Lake District? One of my fondest memories is of driving a boat with my dad on Windermere. . .
I'm doing better over here. Went back to teaching face to face (instead of online), which lifts my mood considerably. Summer is always a hard time for me (reverse seasonal affective disorder, perhaps? not to pathologize things. . . ), and I'm determined to keep on moving forward.
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Lake District pics - sure! Here I am nearly at the top of the Old Man of Coniston. It was great but we were both exhausted next day so spent it in the pub! (better than this time last year when every Friday was Poison Day)
And GREAT that you're feeling better Kate. LOOK HOW FAR WE'VE ALL CLIMBED!!!
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FINALLY took a pic of the Curls! (took it at the bathroom mirror...) I had never did Anything with my hair, so this is how much I got since it grew back. Definitely MORE (had fine, thin straight hair before)
& ... I had Pap test last week. The Dr said even with Tamoxifen, my hormone just acted up enough to bring back my period, & also made the Hot Flashes gone away 2 weeks beforehand. MO next week to talk about possibility of Lupron? Oh yeah, My people said to talk to MO if I need to take Pap test ever again, cos my risk factor is at ZERO!
It's kinda ironic because when I read about it, the risk factors are like, opposite to BC (i.e. more pregnancy, higher risk for cervical cancer)
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Love the pics--you ladies look amazing!! Me, I just have a full-on mullet, even with regular trims.
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