Coping After Treatment - Summer 2013
Comments
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Hi Amy, hope your surgery went well. I had my last TCH chemo on 9/13 and have 12 more Herceptin to go. I'm pretty hairless and am painting on eyebrows but have not lost too many of my eyelashes. I'm pretty heavy in the brow and lash department but will miss my lashes if the make a complete exit.
But anything temporary is fine with me as long as the cancer cells are ELIMINATED!
Wishing you an easy recovery.
Catherine -
Cass- glad to hear you are doing well and things went ok with you MiO. Both my MGH Mo and DF Mo said the sane thing about giving Tamoxefin to post menopausal women. One said, that is something you see more often from those two facilities .. Less common throughout the rest of the US. I also thing DF is of "the "less us better" type of treatment , which I totally appreciate.
I see my LE specialist on Monday, so hope to get straightened out on that. I run a landscape design business so I am always lifting, moving, etc. but it is not the same as good exercise and can't wait till i get back to biking, gym. It has been a matter of saving my energy for work, which fell way behind through treatment.
Cass- I know Berhshire East well. Spent many college years skiing there. Teach at Sunday River now.
Amy- you have such a great attitude! As I work with the seasons, I use them all the time to move my spirit and energy to another place. Glad your exchange went well.
Gracer- you are almost there! Hold on. And I lOVE Zion. I was just thinking about a trip me an my DH took there a few Octobers ago and all the training we did at the gym for it. I want to be in that shape again!
Hope everyone has a healing weekend. I am about to become a grandmother to a little girl any minute. Now ,that reinforces LIFE! -
Lenn13ka - hoping all is well with your new granddaughter.
Tamoxifen going well. No SE's that I've noticed & could definitely pin on the T. What I would like to know - when is the pain going to quit? -
Hi back to everyone. I am so glad my "glimpse of the future" was helpful. I am NOT doing major exercise today as high winds and sidewise rain forecast. I am thinking a walk 1.5 miles uphill to the five star French pastry place. I will catch up with exercise next weekend in VT where I will be doing some serious hiking. Should be peak foliage.
So work and some down time. Really busy week last week with major stuff going on. Major Tuesday deadline I need to be ready for. Then my trip.
If tomorrow clears and the weather is decent, I will do a 40 mile ride of the Kitsap Peninsula....but looks doubtful. I did that ride once in a gale/rain, and once is enough for that experience!
I was at a brain tumor patient conference yesterday as part of the work I do. Amazing progress being made on that front, and extends to all solid tumors including breast cancer. I am stunned by the courage those patients have. I feel like a major weenie. I was also impressed at the dedication of some of the country's best physicians to making life better for their patients.
Off for the walk.....and perhaps a run later. Loving this fall weather. Wish I could share the pastry. - Claire
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Hello to all... It was a good week for me. My granddaughter was born last Sunday morning. Meredith Pearl... Healthy and beautiful.
On the BC front I met with an awesome lymphodema therapist. She says I definately have truncal lymphodema and I will now spend three intensive weeks doing PT with her. It is good to know I am not crazy and just imagining this. She is restricting me to 5lb weights for upper body but I can continue with lower body and core workout. I have to wear a "spanks" type Chami while I a working. It compresses my entire trunk area. She also has me doing a lot of Pilates. It is amazing how little is known about this side effect. My Ro said no way from rads but the LE therapist says that is not correct.
Cass, what hurts? From surgery or rads?? Are you done your move?
Claire- beautiful fall in New England this year as well. I am hungry now thinking of that pastry.
Healthy healing wishes to all. -
Lean.. Congrats babies bring so much joy to our life's..... Well my ladies just lurkin for awhile ....but time to post..... I'm feeling upset cause I really don't know what or how to deal with anything.... Well every time my supervisor speaks to me u sweat a lot .. I get nervous ... Co works are nicer!!!! But some just have the stupidest comments...
They don't know that I'm still trying to remember things .... I'm still having hard time with chemo brain ...anyone else.. .. I want to be strong like I use to ... Not nervous sweaty ... How can I work on that ... Herceptin is almost over my security blanket.... Being ER/PR- no hormonal treatment ...so much on my mind....will see PS to see what options I have for recontruction ... Since my TE was removed and it's a radiated .... Wish it was just an implant ... Hysterectomy on December .... But I must say..... My favorite part of the year .... Holidays are just around the corner!!!! -
Patricia.. Thanks for the good wishes . Sorry you are having a hard time at work. You are not that long out of rads and the post fatigue/brain fog from that alone can be brutal. Give yourself some time. You will get there!!!
The stupid comments.. Let them roll. If BC teaches us anything it is not to let the Bull s... of life take front and center. -
Lenn thanks ... I will focus on anything but morons... And I will be strong again.....how long will my fatigue and brain fog last ??? And what about the skin I have a dark square tan anyone else???
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Patricia, my MO said to me: "The radiation guys will tell you that the post-radiation fatigue lasts a few weeks, but they are liars. More like 6 months on average is what I've seen." LOL!
I still have the tan square too. They assured me it would fade eventually but would take a long time. I don't care, really, it's all underneath any shirt I wear.
But the tiredness and weakness, sigh!! It surely does interfere with my life. Never would have guessed it would go on so long! -
I finished rads on August 13. I was getting stronger everyday pfc (May 17) but now I just sit and watch the Dust Bunnies grow. Lol
Paula -
I was told for each month iof treatment , from diagnosis on, allow yourself that same amount of time to feel normal. The worst post rads for me was 3-5 weeks out. My brain was FRIED.
Pace yourself at work, Patricia and don't feel guilty if you put your pj's on when you get home! -
Hi All,
Jumping in on your thread to hopefully offer some perspective from 12 months out from the end of active treatment. I finished rads September 18th, 2012, after a lumpectomy & SNB and re-excision, and 16 weeks of neoadjuvant chemo. I was pretty tired, but I continued to work full time and I think that helped keep me focus on positive things. What helped me more than anything else was joining a structured fitness program as soon as I finished treatment and was cleared by my doctors. I was pretty exhausted for the first few weeks, but it only took a few months to start getting my usual energy back, and as a nice side benefit I was able to lose most of the 30lbs I gained during treatment. I should add that I kept up with walking through most of my treatment, so I had a little bit of a baseline.
The tan square from rads took about 6 months to fade, and now a year later I can't even tell I had any treatment. I started using coconut oil on the rads area every night, and Burt's Bee's lotion every morning, and I really think it helped not only fade the tan and my scars, but also kept my skin really soft and supple. My breast skin now looks exactly like it did prior to any treatment - maybe even better.
I started taking Tamoxifen right after I finished Rads, and while I have had some side effects (mood swings, warm flashes, mild discharge, muscle aches, constipation), they are not unmanageable and don't affect my day to day activities. I also take 37.5mg of effexor which now helps with the moods and the warm flashes. I resisted taking it at first, and wish I hadn't tried to be so strong and stoic. I am so much more balanced and happy than I was beforehand. None of us wants to take more meds than we need to, but I learned an important lesson about not trying to be super woman. There's some great drugs out there that really help with QOL.
Overall, I would say the first 6 months after treatment were the toughest both emotionally and physically, and that over the past 6 months everything seems to have really balanced out for me. My hair is back to my usual shoulder length style, my energy is back to pre-treatment levels, and I am more aware of each precious moment. That's not to say I don't have my tough days, but I remind myself that I had tough days before all of this too!
I remember reading on these boards when I was just finishing treatment, that so much would change in a year. It was so hard to believe at the time, but now I know that it's true. Hang in there wonderful ladies...one day at a time
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Crazyride43 thanks for the perspective. Some days I struggle with the things that I cannot yet do, rather than looking at how far I have come.
Patricia: I LOVE reading your posts, they are usually so positive and compassionate. I hope you gain strength and health every day. And keep posting, I look forward to them.
I started the Livestrong program at the local Y. There were 10 of us at the beginning. Most were BC but some lung, kidney, melanoma. They gear your program to your abilities. I was a little wary before I started but they have been very informative, know their stuff and are very aware of your particular stamina/strength etc. Will see if I get buff (or even survive!).
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Wonder if anyone has some advice for me. I've really been struggling lately. Just having a hard time reconciling my unrealistic expectations with the way things are. I blame my docs for this, all of them had this attitude when I was first diagnosed like, "ok, you're just going to have this little surgery, no big deal, then heal up and go back to your life just like it was before." Ha!!! My surgeon actually said that I would be "back to normal" in "about a month". Can you imagine?!? Well here it is a year later and I'm still in pain every day from that "little surgery", and now I know that is to be expected, and they all lied to me. I know I have to just accept my new body and get on with learning to live with it and quit mourning all the things I can no longer do. But I feel stuck.
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I think it took six months to get my full energy back post radiation. Well MOST of my energy, because I have learned since that you get to something like 96% and the rest comes back very slowly. You continue to heal for several years. I know this because my hair is much thicker this year than one year ago.
I am now fitter than ever, and have done a series of personal bests in cycling events this summer.
I exercised throughout active treatment. I wanted to see if it was possible to do it, and it was for me. I was dragging, but guess what, I would have been dragging even more if I hadn't.
I have to say, I am enjoying cycling events a LOT more now than the first year following chemo/radiation. I wonder why?
The best is my oncology checks. My oncologist just shakes her head and tells me that she needs to be doing more of what I am doing. She is 20 years younger than I am.
I use exercise to even out mood swings.....have to love those endorphin highs.
Throughout treatment, I don't think there was anything I couldn't do....well I couldn't do hills cycling during chemo. I still refer to it as having "dialed things down". I had QOL forms to fill out, and I was able to do everything on them. Not always with much enthusiasm.
But then it's not physical ability that is the cause of those rampant dust bunnies...... - Claire
p.s. Just got in from a 5k run.
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Jennie - I had to laugh when I read your post. My surgeon said the exact same thing. I was diagnosed on the first day of a very physically demanding seasonal business. I asked him, while I had the chance - before the season really got going- should I downsize the business and he said "no" .. I would be fine in 3 weeks and rads would be no problem. Well of course it didn't work out that way and when things went south I was deep into the season , had to work all through treatment and skip chemo,as there was no way I could pull that off at that point. When I called him on it afterward he said, "if we gave you all the information in the beginning you wouldn't do anything". I do blame him for putting my health in jeopardy. I had to take a crash course in BC and call in every medical favor to finally feel comfortable with my treatment plan and put a team together.
Unfortunately, I think a lot of the recovery issues are in our hands. I am dealing with truncal lymphodema now. I am getting great help with it but, I had to push, dig and scrape to get the help!! My RO told me, even though I had a cord running down my side, that there was no way I had lymphodema. He said my expectations were just too high. Well, hell, they are high..so help me get better!
Besides my physical job and exercise I find yoga is extremely helpful in getting my body to feel better, get rid of aches and sort of "check in" with what is out of place.
BTdemo- glad your Livestrong program is going well.
Crazy ride and Claire... Thanks for your perspective.
Patricia- hope your week is going better.. Stay positive!
Paula- hang in there! Your energy will come back and the dust bunnies will be waiting... -
Lenn, I have truncal lymphedema too. It just popped up suddenly about 9 months after surgery. I knew I was at high risk because I had pretty bad cording all along, and they radiated the heck out of the whole area. But I did everything "right", that was within my control, and got it anyway. And 3 or 4 docs were in total denial, telling me not to worry, that swelling wasn't LE, etc. I finally got to see a LE specialist and she confirmed that's what it was. But there's not much to be done about it. One more kind of pain to learn to live with every day.
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Jennie- did you do any kind of treatment with your LE therapist? Right now I am getting 1 hr massage 3 times per week. I am wearing compression garments while I work and doing a bunch of exercises each day. It seems to be getting a little better. She did get rid of the cord down my side. Do your ribs hurt with it? I have this strange numbness over my rib cage. It is driving me crazy!
At least I look trim and fit with all the "spandex " garments I have to wear! The arm sleeve is a pain but it definitely helps me when I work. My season ends in 7 weeks. I can't wait! -
Apologies for having been absent - school & first round of exams.
The pain - it's like an ache, though at times a sharper more persistent pain. It is at those times I wish I still had an oxy around instead of just NSAIDs. The ache is always present. It gets worse on my longer days. Chronic pain isn't entirely new to me. I guess I haven't gotten used to it to the point that the aching is neglible background noise. .
That said, tonight is a worse night. I got through rads with only some redness. Now, weeks later, the skin in the rads field continues to peel. The rectangle of redness outlining the cone-down field persists. Wearing a bra remains uncomfortable because the peeling skin is very sensitive.
Not to complain (and doesn't that always precede a complaint?)... Yes, I get that I'm "lucky" to be "only" t1a. I understand that a lot of other women would be thrilled for a less severe diagnosis. But you know what? I don't feel lucky. I am so sick of being told I should feel lucky. I know I *should* feel lucky. But, and again, you know what? Being diagnosed with cancer doesnt make me feel lucky. Having had two surgeries doesn't feel lucky. Six weeks of rads wasn't a cracker jacks prize. And so far, five years of tamoxifen forces me to think about my diagnosis every single night and to wonder if that will continue to be the case every night for the next five years. Not to mention issues around insurance, being a student, and possible future professional work / employability. Lucky jumped off a cliff a while back.
Instead of trying to feel the lucky everyone thinks I should feel, I think I'll just groom Boo's paws for a while. We'll have the neatest dog feet in the whole house. -
Cass~~You have every right to vent. It doesn't matter if its stage 0 or stage IV. It's still at the very least, a huge inconvenience....appointments, surgeries, chemo, rads, scans, hairloss, fatigue, FEAR, nausea, constipation, diarrhea, joint pain, nail problems, dry skin, missing body parts, weight gain, weight loss, and the endless questions from people who don't have a clue, but really mean well.
Go ahead and vent Sweetie.
Blessings
Paula -
Cass - Paula said it all - go ahead and vent - I sure don't feel lucky for have the "better" type of breast cancer =the kind that can be treated - that said, I am grateful that it was found early but thats not the same as being "lucky"
wishing you better days ahead..
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Hi CassDugan
"Lucky jumped off a cliff a while back."
Since my diagnosis I have been reading inspiring quotes and they really help me. I try to stay away from anything negative but you have said something true very well and its going in my file of things to read and remember.
I am often torn between the depression of having cancer (uncertain future, rads and tamoxifen) and the realization that I have so far kept my breasts, and haven't had to have chemo and am lucky enough to have adequate medical care.
On the one hand I feel super lucky - on the other hand ... like you said "Lucky jumped off a cliff a while back."
I find that when people give me a lot of sympathy I am able to tell them its not so bad but when people tell me its not so bad I just want them to understand how much pain, discomfort and fear there is out here in cancer land!
Its like being in a strange country with a foreign language and only a bit of a map provided by previous travellers.
It sounds like you have a full schedule soon after surgery and rads. Don't underestimate how tiring chronic pain can be.
Worrying about the future can also wear you out.
So I hear you. Try to give your body an easy day or two and to give your mind a break from worrying for a day or two. I know it sounds stupid but nothing will change for better or for worse if you don't worry about it for a day or two (or more) at this stage.
Sending you sympathy and gentle hugs.
(Maybe Lucky had a parachute and went base jumping and will land safely and smile up at you again.)
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Lenn, I've been going to PT for 3 months, for the tightness and cording (my cording is in the armpit and down the upper arm) and it hasn't helped much. The swelling actually popped up the morning after a PT session where the lady massaged the cording a little too vigorously in hindsight (it hurt) but the LE lady says that could be a coincidence. Anyway I have an appointment with a LE therapist, she said something about special massage which might help. I'm also supposed to get a sleeve and have it on hand in case the swelling goes to my arm, and she said to wear it if I have to go on an airplane, or do any extra heavy lifting, etc. Compression has been mentioned on here but because of the location of my swelling I don't see how that's possible. Every bra, tank or cami I've tried, the edge cuts right into the swollen spot where it goes in front of the armpit. Ouch. I just suck it up when out in public and rip off the bra as soon as I get home. LOL.
Cass, I totally get what you are saying. If one more person says I'm "lucky to get a kind of cancer that is very treatable" I might just scream. I felt absolutely fine, healthy and fit, before that routine mammogram that turned my world upside down. And all the treatments that followed made me weak, sick, scarred and permanently changed. No, I don't feel lucky at all, either. -
I'm a born again Christian so I try to always be very careful of my words. The Bible says somewhere in the Book of Proverbs.....Life & death are in the power of the tongue....so I try to speak life, blessings, health, prosperity, etc.
So it's really difficult when people come up to me and say, " So you're healed now." I was dx Stage IIIc. They think just because I finished treatment 7 weeks ago, that it's all over.
I realize they don't have a clue about breast cancer. Before July 27, 2012 I didn't have a clue either. But it's difficult to answer them. I just smile and say, " God is good."
Blessings
Paula -
Dear Paula
When I was told I had BC I decided to leave God out of it. I don't mean not to believe - I just mean not to ask Him why? I decided that personally I wouldn't be doing any praying but if others wanted to on my behalf that would be fine.
I saw a TV show where the main character had a BC scare and when it was B9 she said "Thank God". That was the first time that I was upset with God and I thought - why does someone else get to have a thank God moment and not me?
The day of my surgery was scary for me. I was more scared of the pre-surgery wire insertion and isotype injections than anything else. When it was done (not nearly as bad as I thought it would be) I suddenly found myself thinking "Thank God".
Then I realized I was going to have some times when I couldn't thank God and some times when I could.
I have decided to be more open to looking for moments when I can thank God for things. And I am not religious!
I think you are wonderful to be careful of your speech. It will be a blessing to you and to others in your life.
Your answer is wonderful. God is good. Perhaps you can add ... "and healing takes time". It may convey to others that you aren't quite where they think you are just yet.
You are a gentle soul in a rough world.
Hugs
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Let us not overlook the fact that, both theologically and emotionally, "healing," and "curing," are not the same. We can continue to heal regardless of our physical state.
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When I had my first MO visit after treatement, we (or at least I was) were having a discussion about what may have caused my cancer..no family history, breastfed, had a baby early, ate healthy, exercised all the time, kept my weight in check...etc. I wanted her to give me direction on preventing a recurrance. What did I do wrong?
Her answer.."you were just unlucky". No matter what stage we are at, we all have to live knowing that anytime we can have a recurrance.You do what you can, you modify your lifestyle, but it is still a crap shoot. I am grateful it was caught at stage 2A, grateful that I have health insurance, grateful that I have access to some of the best hospitals in the world, but a definite NO to lucky!
Jenn - check out Assets with thick straps on Amazon. They have them on sale right now. I have been wearing them for work and they are OK. I feel grateful that I have found a good LE therapist but right now, I have to leave and drive an hour each way to go see her..not so lucky.
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Bounce~~You made my day! 😃 I've been feeling blue today because of a couple of outside comments made on a Christian thread I started on BCO. "Pentacostal sisters"
I needed your comment more than you could possibly know, and I think "Healing takes time" is the perfect add on.
Blessings
Paula -
Brook side~~You are so right! I believe doctors can cure...but God heals. I know that may not make sense to some, but it makes perfect sense to me.
Blessings
Paula -
Hi again Soteria 205
When I answered your post I was unaware of your other postings and was replying only to your post on this discussion thread.
I think you went astray by making reference to another member in a way that could be perceived negatively or critically by others - even if that was not your intent.
BCO is the place for any BC patient to come to find total understanding and acceptance no matter what their problem, their joy or their pain.
I have seen posting after posting of bad news followed by good. Complaints followed by happiness. Laughter and tears. But the thing is we all acknowledge how the other person is feeling. That is what I did when I answered your post on this thread.
That is all we ask of each other here - mutual understanding and respect. (Of course there is also the educational side of BCO.)
I appreciate you feel concern over someone else in a way that is different from how I feel it - I respect your difference and ask that you respect mine (ours) too.
Some things we keep private - even in this great place of sharing.
I hope you can appreciate that while my previous answer to you showed undertanding of your pain your post on the other thread showed no understanding of the torment the poor poster was going through. All she wanted was to be shown the love and understanding you have felt.
I think you could have done a lot more good for her soul by replying to her directly that you hear her pain and hope she feels better - leaving out all mention of God and religion - than by asking other people to pray with you for a non-believer.
I hope you have noticed that you left your religious thread to look for solice in this thread - for the pain you felt from not being understood (by people who basically share your beliefs).
I hope you don't feel this is a rant or against you in any way - it isn't. I just feel I was unknowingly put in a tough spot and don't want to appear to have chosen sides. I understand you both and send love to all.
Let's just help each other through the tough bits.
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