Why can't I do this?

Hi clarrn,

I am (so far) pretty much compliant with my MO's advice, although I am contemplating what my decision will be when she prescribes an AI. In my daily life, though, my lethargy is overwhelming. I do manage to get to my appointments, and to walk the dog every day, but everything else just falls to the wayside. I admire the gumption of you younger women in dealing with small children ... as long as your daughter is OK, dirty forks are irrelevant. But you and I both need to pick up that phone (or have that talk with our docs) ... I've done enough reading on BCO to realize how much difference the right meds and/or counselling has made to many women here.

clarrn -- maybe you are overwhelmed, and not used to being in that spot, so you are reacting by just not dealing with what needs to get done - I think you have accurately named it as depression. I've been there, although not with exactly the same behaviors. I encourage you to print out your post and make an appointment to see one your docs. They can help you feel better and get back on track.

Ohhh yes, depression for sure - I was given Ativan six years ago at the start of chemo and I needed it years before that but was the in control, businesswoman, wife etc. person - not a good thing - talk about non-compliant - I wouldn't EVER go to the dr. in case I had to stop what I was doing - well, that all came to a screeching halt! I am much, much better emotionally now - I rarely take Ativan but do when I feel the depression creeping up. I also have an awesome medical team and one of those members is a social worker who actually validates my feelings - my PCP is fabulous and says "come in any time even just to talk" - my onc has let me tailor my treatment to suit my lifestyle and you know how hard that is to find an onc to treat you like a person - one last thing I had a port and it was wonderful - why did they give you a PICC line? Sending hugs, S.

Mom to a three year old? ICU nurse? Dealing with Breast cancer? And clotting issues? No help with the day to day admin-type things as the to do lists get longer around the holidays? Any one of those things could send someone into a tail spin and you are trying to manage all of them. I really admire you for the strength it took you to post about this. If you can focus on your mental well being and let some of the other things slide (which it sounds like you're already doing brilliantly - love the fork solution) maybe you will feel a bit better. I always say that there's no one at the end of treatments handing out ribbons for "toughness" - take any and all help offered and buy help if you can afford it. And come back here often

Hmm I can sympathize totally and have no solution. I wish you luck - BC sucks.. the whole thing. Even having kids doesn't motivate me enough I just hate all of it. I hear you and wish I had something to help.

I have been lurking here for some time - been in tx for 3 solid years - no break - one poison after another - felt like I was the only one that has hit the wall - my oncologist delights in telling me about others on Xeloda who are doing "great" with no side effects. I think Xeloda is evil - intense side effects - feel like I have been hit by a train all the time - severe muscle and body aches, my head feels like an over inflated balloon - sinuses pounding - monumental fatigue and I am not allowed to take anything to mitigate side effects, no aspirin, advil, and nothing to relieve the severe depression (antidepressants contraindicated) that has set in since I started this drug. It is just cruel and unusual punishment. I live alone with no family, drive 2 1/2 hours each way to appointments where I am lucky to get a rushed 10 minute session with my oncologist - for this I sit in the waiting room for 3 hours. Want to stop but also want to live. What a mess.

Yikes! formydaughter - thank you so much for your understanding - I am a therapist and have always considered myself a balanced, calm person - so disconcerting to morph into the patient from hell. Xeloda causes an anxiety that is impossible to control - like the things that come out of my mouth are astounding and by the time I hear what I said it is too late to take it back and present my woes in a manner more conducive to a sympathtetic response. How in the world do you all deal with these myriad issues in 7-10 minute sessions with the doc - once a month! I am so tired of spending a month feeling like maybe next month they will do something to make it better. I leave these sessions with more questions than I arrived with and this just increases the anxiety. Road blocks everywhere I turn. Ah well, not such a good start here, dumping all my angst - but I have been holding these feelings in so long, sometimes I feel like I am going to break apart in a thousand little pieces. And I know my doctors probably think I am a nutter - which actually I am not. There are no support groups where I live (rural California coast) so it a lonely venture. Hopefully being here will help. Thank you so much - the tiniest bit of heartfelt caring goes a long, long way

I'm also in healthcare (physio), and am also feeling like "that patient". Sorry this is a long post, but they say confession is good for the soul!

Same time as my Cancer diagnosis (Oct 2013), I was diagnosed with a myeloprolific disorder, producing way too many platelets in my blood. I developed dvt/pe during chemo, and had to take Lovenox injections (anticoagulant) for a year afterwards. I argued/pleaded with my hematologist to let me change to oral Warfarin for about 6 months after that, and then I persuaded him to let me stop. He wasn't keen, and warned me I was at high risk for further clotting episodes.

I had a PMx and bilateral free flap reconstruction last month, and now suffering widespread clots throughout both lungs, I am back on anticoagulants for good now!!

Also I was taking 3000 units Vit D, on advice of a bc specialist doctor, and when I quit the warfarin last summer I quit taking that as well. I just didn't want to be "the patient" any longer. I'm the fit, hockey-playing physiotherapist!!! When my Vit D levels subsequently dropped, that doctor left instructions for me to increase my intake to 6000 units a day! I sent an email with an article that stated recent research cast doubt on the importance of Vit D in prevention of bc recurrence. In truth I was just being Bolshy. She didn't respond, and I didn't take the Vit D!

Finally, I have mild established lymphedema in my original Mx side, and have been prescribed a glove and sleeve. I usually wear them for working out or Dragon Boat Racing, or on an ad hoc basis if my arm swells a bit or gets achy. But I hate wearing them at work. I can't work in the glove anyway, for hand hygiene reasons, and 80% of patients ask me "what have you done to your arm?", which I hate!

I got a bollocking last week from the PT at the lymphedema clinic for not wearing my sleeve and glove fulltime!

I am trying to behave myself now, and be accepting of my situation. I am wearing my glove and sleeve as I write. I took my 6000 units Vit D like a good girl this morning, and in half an hour will go do my Tinzaparin injection, and swallow 8 mg Warfarin. I have also decided that I should probably stop arsing about and take my 20mg Omeprazole each morning, and not just when I can't tolerate the heartburn any more.

See, this is me being compliant! Sigh.

Packof2, I had been on Lexapro too thru BMX, but had to switch to Citalopram/celexa for contra- indication with chemo meds. I'm not sure whether it would work with Xeloda, but might be worth asking. My GP described Ativan as temporary and the Celexa as a longer term fix. At this point, I would allow yourself the Ativan and not worry about addiction. It sounds like you really need it. It's not like you would be taking it for fun or to get high - you'd be taking it for a medical reason.

I must admit that I've had to move to Percocet sometimes for debilitating head aches from tamoxifen. Tylenol and ibuprofen do not touch them. I too fear the addictive component of it. But my MO said that for now I need it and we will worry about taking it out of my regime later. I try not to take it evey day - only as needed. He gave me a bunch of literature on how taking pain meds for pain is different from taking them for recreation, and that needing them for pain does not mean addiction. I hope it all turns out. We are trying to switch to an AI to get rid of the head aches. So, I'm newly getting Lupron shots to be able to do so. Hope that it works! But so many meds. And meds for the SEs of other meds. Pharma loves us. I used to take nothing up until DX. Seems light years away at this point

Morwenna, what is Dragon Boat racing? Sounds fun!

Hi - have an appointment with primary tomorrow so will ask him - seems to me the oncologist is the best person to know all this but they directed me to my primary - ah well. Have now been off xeloda 13 days instead of just 7 and am beginning to come around even though the chemo nurse said my issues were not caused by the xeloda. All the way along, if there is going to be an off the wall side effect, seems I am going to have it - just think my poor little brain is particularly sensitive to these chemo drugs - but reassuring to know that I am not just going nuts!! Also, had major sinus and ear infection so several days on an antibiotic is helping to feel better. Will let you know what they say about celexa - am due to start xeloda again on Saturday.

I was amazed when first diagnosed at the ease with which you could ask for and get almost any drug you want. Since I worked with the drug court system for over 20 years, evaluating category 2 and 3 felony offenders for possible tx as apposed to prison I have seen how quickly and sometimes unwittingly people can become addicted to drugs. So, my hesitations possibly linked to my hx. My docs assure me I am not an "addictive personality" so no worries, but I know better. But, I agree that taking meds for a medical purpose lessens the potential for addiction and stuff like pain can be far more stressful if not treated that any risk associated with tx. Sometimes, I think I am just looking for pie in the sky - want to be like I was before all of this, and of course, that is never going to happen.

Good news - the xeloda seems to be working for now so want to figure this out. Thanks again - Susie

Hi again - so saw my primary and called the specialty pharmacy that dispenses the xeloda, talked with the pharmacist and he said no contraindication with lexapro and xeloda - I am sure my oncologist said there was but I have been such a mess lately that it is possible I misheard. So, I have started lexapro and I swear I felt the anxiety ease within hours - they say it can take weeks to get results but..........

I have also taken a break from xeloda - at the two week mark off now - and will do one more week - this could account for feeling better.

I have been able to maintain decent attitude throughout this until recently and now that I feel better (less stressed) I am returning to better mental state and it is example to me of how much attitude affects quality of life - now if I could just figure out how to maintain that during the really crappy times.

Another new development - my oncologist has referred me to another oncologist in their group - all she does is help patients deal with the side effects of tx and pain issues, etc. I spoke to a woman in the waiting room last month when there for my appointment and she said seeing her helped more than she could have hoped. So, I have an appointment with her March 19 and am looking forward to it.

Onward, little soldier!