Anyone else having a hard time recovering?

Hey Virginia --

I don't actually mean cancer itself is a part of my everyday life -- I mean the reminders.  I mean there is not a day that has gone by since my diagnosis that I haven't had to deal with it on some level.  

 As far as the matter with my mother, I have tried numerous time to be firm.  She is just the type of person that has no respect for others feelings or thoughts when it comes to her children. I have 5 siblings and none of them are able to maintain a relationship with her, but that's another story.  Anyway, I have taken care of that situation.  Unfortunately it required me refusing to talk to her until she can honor my wishes.  Which will happen when hell freezes over, but that's her problem.  I have learned to become more assertive when it comes to my needs.  I don't have the patience to worry about how others interpret what I do for my own sanity and the problems with my mother have been longstanding, which is sad all things considered.  So I am doing better with that situation.  I wish it could be different but I have to do what is best for me.  I have enough to deal with without trying to babysit adults who act like children.  

So I am doing alright.  And I will get through this.  I am just struggling to set my own boundaries but I will find my way. I am certainly no quitter.  A bit defiant maybe but thats a good thing. Thanks for the suggestion though.  You were right on target.

I guess the answer to the original question posed by susiered, "Anyone else having a hard time recovering?" is this ... Yes, everyone is having a hard time.  And we will continue to have a hard time.  But if we face the hard times together and continue to be a source of unfaltering support for one another, the difficulties we encounter will only serve to make us stronger and more resolute in the outcome we demand.  I know we will get through this and we will get our lives back.  But it's nice to be able to rant and vent along the way.

I thank all of you for the role you will play in helping me find my way back to me!! 

-- Ann   

I don't think we will ever "get back" to normal.  There has to be a new normal.  We are different women now.  I think we just have to try to move forward as best we can.  I know that stinks.  We had BC and that will never go away--even if we live to be 100 years old.  That history is now a permanent part of us. 

As for the insensitive comments, I try to remind myself that nearly all people are trying their best to be kind.  I choose to believe that.  I have had BC, and I am certain there have been times I hurt other people's feelings when I was doing my best to help them.  So, when my feelings are hurt, I try to remind myself that we are all fumbling through life as best we can. 

During my rounds of tamox, my onc and I discussed a "holiday" from the med.  It is thought in some medical circles that a holiday can also Enhance--the effectiveness of some meds.  I have no idea which ones and neither do they.  Also, a holiday can provide the body time to recover and when restarte in about 4-6 wks, the side effects are lessened, sometimes greatly.

I took the holiday: my cholesterol bottomed out(well almost) and my cholesterol meds were discontinued. My blood sugar lowered.  I stopped taking anti inflammatories for my joints, I slept without ambien and stuff, my hot flashes stopped (i had really tried every med on the list for them--neurontin was good as was bellagal)  Now, I am making no medical recommendations for Anyone except myself.

I chose to stop it after 2.5 years.  My onc agreed. MHO  for ME.

Susan, good for you for starting to walk!!  ANY exercise is a huge benefit, I think.  Please don't be reluctant to write.  I think many people read even though they are "too sick and tired" to write back.  You never know how many people you are helping.

For the record, I stopped Arimidex and Tamoxifen-- both due to side effects.  For me, driving my car is scarier than this choice. 

I completely understand how you feel.  I was diagnosed in October 2007 and I am still waiting to feel better.  Lots of treatments, medicines, time, etc. 

If you're not absorbing Vit D, you may want to have MD check for Celiac disease--widely underdiagnosed in the US.

I think if they told us all the things that COULD happen, few of us would have the courage to proceed--or maybe it's just me...

OMG, I found other people who were infected during initial surgery.  Nice eh? The medical profession dismisses the seriousness of MRSA/VRSA with "it's everywhere."  Yea, because they brought it to the community. I had an additional five surgeries due to the infection, expander in, expander out, lat flap, etc. and everything else that could go wrong did. I'm still angry with my first oncologist - how dare they send any woman home after the second chemo treatment and not warn them that you are going to slam into menopause, like the mere suggestion would throw us all into a hot flash.  I did my research, but I never expected to be flashing every five seconds and trapped in my car in my parking garage.  When I called the doctor I was told, "We have a pill for that." Really? You couldn't have given me a Rx before I left Thursday? They blindsided me every step of the way and they blindsided my co-workers too. Yes, I've been to counseling and was told to move on and get over it.  HOW?  I have chemo brain, no immune system, constant pain and insomnia.  No one ever warned me about that.  MRSA/VRSA was worse than cancer. I tried Ritalin for chemo brain and it just depressed me. Wonderful, so I am crazy too. I then went to Adderall, which allows me the ability to concentrate, but my office would love to get me out of their system, I cost too much. I have been written up for smiling and nodding, because if I spoke, I would have told off our administrator.  I lost my permanent position and now float, which is ten times more difficult. The three women who have been diagnosed in two years at my office have all decided what we have in common is stress. One attorney was so condescending I responded that I wasn't an idiot, I have chemo brain. My support has been my husband, who was fantastic for two years, but it gets old - he's only human and has far more patience than I ever will. My sister told me to write a book - a novel idea, doesn't everyone? She's just tired of being the sounding board. I can't blame her, I'd be tired of it too. Will I ever feel good again? I was addicted to OxyContin because the pain was excruciating, but do you think they could have told me that when they tunneled the lat flap under my right arm that there was a possibility of nerve damage? I don't even think the surgeon even knew that he injured and/or severed some nerves. No, of course not. I had to search the web and found I have T1-2 nerve damage. The pain moves around or you feel as if your lungs are filling with fluid and pushing on your rib cage. I wasn't mentally addicted to Oxy, but physically and went through hell weaning myself off. I did accupuncture which did offer some relief, but was costly. I am lucky to sleep four hours a night and some nights I don't sleep at all. I owe my oncology surgeon for my addiction to Xanax and take it nightly to sleep those four hours. My co-worker who was diagnosed shortly after me now has bladder cancer and has gone alternative. She will never trust the medical establishment again. She's my ginny, because I don't either. Geez, they just acknowledged in the last two years that chemo brain actually exists! Now I read that 80 percent of us are affected and only half of us regain our cognitive skills. Did you get that information? I didn't. I am so disappointed that our government can't fix our health insurance problems, because getting reelected is more important than caring about 90 percent of the US population. I want to slap people when I hear them say their insurance is great - I bet, try to use it. It's gone up 37% in just the last six months. I am tired of my new onc pushing estrogen inhibitors when I finally got the truth out of my old one that it will only lessen my chances of recurrence by NINE percentage points. Let's see, I should go through hell, lose my bone density and suffer from joint pain, loss of hair and severe hot flashes so they can have nice dinners and vacations on the Drug Company? I am exhausted, concerned that I will lose my job and insurance, worried that it will come back (a very life-long friend will soon succomb at 55 - her fourth time) and wonder if I will ever just feel good. I'm envious of women who can actually function and cancer isn't on their radar screens, I guess they've never experienced a staph infection so severe that your skin dies - turns a lovely shade of black. I couldn't even look at it, my husband did all that, along with bathing me and forcing me to eat. Why if I hadn't had the infection, may be I too would have come through chemo with energy to walk and the ability to sleep. Good luck finding any information on the high powered antibiotics they gave you, I even tired the CDC to no avail. All I have been able to find out is they cause insomnia. I had to take a Rx for nausea that if I hadn't been able to get the generic would have cost $464 with my insurance, the generic was a mere $90 and that was for only ten pills. This drug wasn't for chemo, it was for the Cubicin that I finally got intravenously for ten days after numerous hospitalizations and three courses of Zyvox didn't touch the infection.  Ann, I hear you and I can empathize. I'm looking for a new therapist and will let you know how my alternative friend is doing. If you find an answer, please share it. I've met few people who have been through our hell, but when MRSA/VRSA makes it way to the northern states and may be the halls of Congress, I'm sure there will be more.  Over 23,000 people die every year due to hospital staph infections. Should I be thrilled I wasn't one of them? I am suppose to be grateful that I am alive and I rarely am. The new normal sucks. Where's the pill for this?