July 2010 Rads

Hello friends,

Tracye,  glad you are able to venture outside,  I hope you heal quickly.  It is hard to balance your need for rest with inactivity.  I too have been afraid my brain will turn to mush at times.  But sometimes we need that forced rest.

Julie,  I hope your getaway was fun,  I can't believe your luck, now a sinus infection,  I guess this really does put a crimp in the old immune system. 

 Donna,  our friend found the chocolates funny,  phew.  I am sorry about how difficult the results are to make sense of.  I hope it is just the scar tissue.  YIkes snowed in,  in Dublin.  sounds like a movie.

Chicago, I agree my sense of humour has changed too.

Sonia,  I am sending you a huge hug,  I am so sorry that this is SO hard.   I pray that you will get through this tough time.   I think the idea of living with the idea of cancer is what so many others don't get.  I was talking to a younger woman yesterday whose returned.   I think you are right that it is part of our reality now, even if I don't want it to be.

I am sorry the followups are so hard for everyone,  I agree,  that if they would just say, okay due to scar tissue,  blah blah blah, we can't be definitive we would all get that,  but they seem unable to put that on the results which sends us to astrospace where i visit a lot lately.  Thankfully,  my surgeon put it in perspective when I called in a panic.  I have my follow up Monday,  what is all this pre Christmas checks??

I bought a new book called Picking Up the Pieces that my therapist recommends.  It is about the emotional side,  and I cried when I started to read it because I saw me everywhere.  It may be helpful to you all,  It seems the authors spoke to people recovering from cancer and it just seems right on.  

I lost it the other day with my poor Dh,  I think I am feeling so  much loss of control and I guess I am angry at the cancer and how it has taken things from me.  I feel frustrated that my stamina hasn't returned.  

I will even admit to you guys that I read the obits and notice those dying from BC.  am I sick???   I too was saddened by Elizabeth Edward's death,   I still can't believe how hard her life had to be,  and then I read that people were going to protest at her funeral.   The poor woman, unbelievable. 

Well I know I can come here for comfort and support,  so thanks again for being there.   You are all a godsend.

 Brenda

You guys are so amazing. Thanks for the great support, the hugs, words of encouragement and holding me in your thoughts. I am definitely back to waking up and having trouble getting back to sleep. Lots of anxiety dreams. Tracye - I certainly feel my breast is still swollen - and much of it is along the side of the breast below where I had my sentinal node biopsy. If I feel it long enough it feels like a circular area that I can start to feel panic about. My breast is definitely a bit bigger on the treated side. I am glad the MRI will look at both my breasts. I am due for my yearly mammogram but I've decided this test should be sufficient. I will check that out on Monday. I have a follow-up appointment early January to see my breast surgeon and I have also decided to request a referral to a medical oncologist (not sure if that's what they're called) - I currently see a radiation oncologist but I am thinking quite seriously about shutting down my ovaries and changing to an aromatese inhibitor instead of tamoxifen. I was reading a study that said with my type of cancer it isn't as effective - so I want to talk to someone about this. I was quite concerned about endometrial cancer as a side effect but there is a doctor who has been working in the area of breast cancer treatment who has said in an article I was reading that since the 80's he has only seen 3 women develop endometrial cancer - that made me feel relieved but I want to find out more about the tamoxifen/lobular cancer issue. I hadn't heard that tomoxifen reduces breast density Kim, I am the queen of dense breasts - I've been taking iodine since July and it is also supposed to reduce density - I guess I will find out soon enough if it has worked for me - but if it hasn't for those of you with dense breast tissue - likely it won't have made any difference.

I think the holidays have also had a negative effect on me -  it is a time of year my mother loved and it just hasn't been the same since she died. I think with everyone getting tests and results right now it is a bit of a downer. I used to read the obits after my mom was diagnosed with cancer and feel overwhelmed if there was anyone who was her age or younger. I avoid them now at all costa - though I feel like all anyone ever talks about is cancer -on the news, in the staff room - it makes me feel crazy.  I am happy to be going away with my guy for Christmas - we are meeting my daughter's in Palm Springs - going to lay around the pool, read, hike and ride bikes - and shop. I have 3 weeks off for Christmas and I am hoping this test doesn't interfere with any miserable results.

I think you are all so amazing and it is because of you guys coping with these wait and see results  - I realize I will have to try to accept any results I get as gracefully as the rest of you have done. I think I will try and read "picking up the pieces" sounds like something I need to check out - thanks for the suggestion Brenda.   

Thanks again everyone,

Sonia 

Brenda,

Sorry about the BIRADS 3, but glad to hear the surgeon thinks it's "normal" (I'm so starting to hate that word). I wish they would warn us up front so we don't get so freaked out about it. If I had been TOLD that it is typical for the first post-surgery, post-rads mammo to come back BIRADS 3, it wouldn't have bothered me quite so much. I wish there was some way to speed up the whole emotional recovery part of this, but I know it just has to run its course.

Sonia - hang in there - your Christmas break is just around the corner!

Tracye - How's the recovery from surgery going?

Karen

Hi again,

Karen,  I agree they need to tell you up front so not to scare the you know what out of you!!!  I am not too worried as it makes sense with the scar tissue,  Okay LOL I originally typed SCARE tissue.  

Sonia,  I am in Canada too,  and my report that I got didn't say that but my surgeon told me it was the BIRADS 3 so maybe only shows up in the doctor's reports,  who knows I know things are done a bit differently. 

I agree the book maybe very helpful.   I did the mindful course and it was good,  I have found it hard to try and do everything I think I should be doing to be healthy,  so I just try and do what I can, but the walking and writing seem quite doable to me.   Sometimes,  i think I needed more time off to heal,  I guess I really didn't expect all the emotional as well as the physical aftermath.  I like that the book suggests you do what you need to.   I hope it helps me integrate all these new pieces of me. 

Don't apologize,  I think we are all in a very similar place,  it just seems to cycle through,  I know I get sick of me at times too.   I do think there are a lot of positive things,  for one my attitude is much healthier,  I refuse to go over the edge for my work.  I do think I have a bit of fear of stress, and for me I think that at least is a healthy fear.  I think it is going to take a while to work out who I am now and what I really want.  I find my heart and my head are at times in disagreement,  and I am trying to both listen to myself while not making major decisions while in the midst of all this. 

So nice to be in this journey with others who get it. 

Hugs and best wishes, Brenda

Hi Kim,

I had a very similar experience last week,  My glasses broke and I needed to take them in to get them fixed but I couldn't face doing it after work,  so I thought I would go with my husband in the evening,  He was less than thrilled and I was angry because this cancer makes me so darn tired.   I am used to being the doer, not the one that needs the help  so I was upset that I rely on him so much.  (Not to mention that he needed stitches a couple of nights earlier,  way too much time at doctor's offices).

The next morning I absolutely lost it when he didn't put antibiotic cream on it,  I couldn't even understand why I was so mad.  I guess I have always been the organizer and the one to get things done, and the lack of control is really hard.  Maybe,  I ? we are getting to the anger stage in the grieving process.  I know I was so involved in just getting things done that I don't think I really gave myself time to process everything.   And as I should know,  we have to do that whether we want to or not. 

So I don't think you are losing your mind,  I think this  !@##$%  Cancer is a Bitch.   and it is okay to be angry,  though I did apologize to my husband as well.  I guess we need to process all the losses in order to get through it.  I also do wonder if the time of the year and the other pressures don't add to it.  I do however feel sorry for my husband, because I know this is hard on him.  He also had a melanoma this year,  and I don't think he has really processed that or me either for that matter. 

I just want to run away for several months and sit by the beach and try to absorb all of this.  I know when I lost my dad,  it took a lot of time to process and get back to being me.  I guess we have all lost a part of ourselves,  our health and have to take time to integrate all these changes in a healthy way. 

 I can totally relate to not feeling like I have enough time,  I am beginning to think I should have taken more time off work to deal with all of this,  but I thought I should get back blah blah blah. I don't know if that is too indulgent,  or if it really is insane trying to carry on with out stopping to deal with this,  I know shoehorning this in to my life is vitally important.  I guess with the treatment things slow or stop and people expect that,  but the afterpart doesn't quite fit as easily somehow.  The book I am reading Picking up the Pieces talks about the two transitions and focuses on the transition from treatment onwards,  so I am finding that helpful. 

Sometimes,  I just want some one to do it all for me,  feed me the right things etc.  I know I can't possibly do all I should,  so I am trying to choose to do what I think I need. 

Hope your check up goes okay,  Take care of yourself,

Big hug,

Brenda

Karen,

I think you are SO right,  we look "normal" but in reality this part in many ways is tougher than before.  I agree 2011 has to be better, but I am afraid to jinx anything.  

Kim, I am sorry this is so hard,  I think that the anxiety that all these tests and follow ups is something none of really expect to be so bad.  I was shocked to feel weak,  weird,  it is like our bodies know.

A lot of what I am reading says we need to get back in touch with our bodies after everything that has happened.    I guess I didn't really expect the fall out,  I know today I am having a rough time too, and I dont' really know why,  could curl up and cry.  

I think Karen is right we need to be very gentle with ourselves.  The book I am reading referred to putting together all the broken pieces but they don't quite fit the same way anymore,  that seems to be a good analogy. 

So hoping and praying that we all get through this along with our families who are also struggling.

Bless you all, Brenda

Thank-god you guys are here. I know that feeling of surging anger - while having what seems like a concious voice deep inside saying "good god what am I doing" but not being able to stop yourself. I had one of those in the grocery store with my DH who stood patiently staring at me in horror while I freaked out and people were walking by with their carts of grocieries. I completely lost my mind and could not stop. It makes me laugh now to think about it.  I have found the book really kind of helpful - I think you guys might like it - it really does a good job of putting things into perspective - don't you think Brenda? Chicago I haven't had a period for three years - but my doc says my hormones were still in perimenopausal levels when tested. Given the night sweats and hot flashes it is hard to believe I have any hormones left. I'm really glad to hear your appointment went well - it nice to hear your results were good. You know Brenda, your so right about people just not realizing how hard this is. I really had no idea what a heavy thing it is to have this hanging around no matter how much we are encouraged to just get on with our lives.  Kim, I found the lobular cancer/tamoxifen article in one of the threads in the lobular cancer threads - I will go look for it and PM you with the link. Thanks for the encouragement Karen, I do feel entitled to be a bit whiney but it gets old really quick. I just wanted to comment about taking time off to go through this. My timing was impecable - I was finished school for the summer when I went through treatment. I just can't imagine how you have coped with working, treatments and recovery - Donna is right - take care of yourselves. This is a tough time of the year - everyone feels excited about holidays, are eating decadent meals/baking/chocolate constantly, it feels as though everyone is trouble free and there is a lot of pressure to feel good, lucky etc. I'm not going to lie - it's kind of a stretch right now for me to feel happy and that makes me feel guilty too. In the Picking up the pieces book there are quotes from lots of people of different ages and it is actually a relief to read other people's words. we have been through a tough year - I'm with you all - bring on 2011.

Hi Everyone:

 I see I have a lot of reading to catch up on.  I hope everyone is well and doing better.  Yes 2010 has been a hard year for all of us, lets hope and pray 2011 is a much better year for each of us...

 Sinus thing is still with me, breast hurts like mad all of a sudden and swollen, I see the Onco next week and I will be in big trouble as I have not started my pill "F" yet.  I keep looking at the bottle and just can't bring myself to take one.  

I think part of it is, I'm very depressed over my mom and sister and having a very hard time adjusting to loosing 40% of my family in less then 5 months apart--- I miss them both so much all I do is cry most of the day---I know in time it will pass...I just want Xmas to be over and done with...I can't even bring myself to send out christmas Cards...

Asked about the Mamo today with my family Dr. he did say a year as all the radiation can give a false reading for up to a year--But will ask my Onco about this next week after I get my butt chewed out...:(   But man my breast hurts the past few days, can't even touch the top of it.

Ok that is all my complaints for today...LOL

Well off to the couch I go--Ice pack and all on my breast---I sometimes wish I just had them removed so I would not have to worry anymore---

Miss everyone and will keep in touch more--

Hugs and Nite

Julie

Bailey-Thank you....Trying hard to process all that has happened this year, I will I think in due time...:(

I agree even if both were gone I would still worry, but I'm sick of the pain, itching, swelling, etc, just want it all to go away.

My family Dr. yesterday told me to "TRY THE PILL FROM HELL" and see what happends, he said it would be in my best interest, so MONDAY I will pop the pill.  I just want to feel like "ME" again, hopefully the SF will not be bad.

Well off to Xmas shop for Jim, I told him no presents this year, but you know men....He has to work all of Xmas weekend so I decided to bake a ham etc and bring it to him and his grew at work.  He tried to get off but he has been off so much this year he can't find anyone to work his 3 days, which I can't blame a lot of them, but then he always covers for everyone else so in a way I"m a little upset as I really need him home on that weeked...:(  

Stay warm, COLD here in Chicago

Julie

Hi Ladies,  I'm with you, secretly hoping I could skip by these last holiday weeks and get right to the new year.  I really feel 2011 is going to be so much better, it just has to be.

Sorry we're all this negative angry cycle.  It has to be driven by the follow-ups.  It all comes flooding back walking into the hospital, just as Chicago says.  All the stress of missing a          possible recurrance, or false positive, or second guessing decisions is way too much.  I feel like I've aged 10 years from the stress not the cancer.

Kim, I never heard about truncal LE until my appt yesterday. Sorry to hear you're dealing with it.   I kept thinking the swelling was from rads, but the doc thinks it may be LE because the swelling in my boob and underarm isn't any better.  My arm swells a bit when I over use it but it goes away with stretching.  She gave me a scrpt for a compression sleeve and bra and therapy if needed.  Like you I don't know how I'm going to fit it in and honestly don't want to fit it in.

Rest of the appt was ok.  She said to put the inconclusive results out of my mind as there is a lot of radiation damage and likely due to that.  She pretty much blew off my hip and joint pain and said it was 'hip' week because everyone was complaining about their hips, but never really got any type of answer. 

Almost forgot, the name of the book I keep carrying arround but haven't gotten into is  Embracing Uncertainty by Susan Jeffers.  Subtitled breakthrough methods for achieving peace of mind when facing the unknown.  Seems like a good fit for what we're facing.

Best to you all and thanks for being here.  I always feel better after stopping in    Donna.

Hi everybody.  Saw the med onc yesterday.  I definitely have truncal lympedema.  He said even though it's tender, I should try to massage the fluid away from the breast and underarm back into the body.  I don't know what I think about that.  With so many women having lymphedema problems, I would have thought modern medicine would have come up with a definitive treatment by now.

Ok, this may sound silly to some, but I have to share with you all.  When my daughter was 8 years old, she came home from her best friend's house with this little furball in her hands saying "mommy can I keep it"?  It was a newly born Cockatiel.  Well, soon enough she was mine, I was the one who took care of her and trained her etc.  That was 19 years ago.  Well, daughter goes off to college and moves away, Lemon Drop is still with me.  She's been obviously sick the past few weeks and died during the night last night.  OMG have I cried today.  I haven't cried since the cancer diagnosis and I think this did it.  I know she was a bird, but she had a fiesty little personality.  When I would get home from work at night, I could hear her sqawking because she knew the sound of my car and wanted attention.  I'm just one of those people who gets really attached to their pets.

I never ask "what's next" or "what else" because things could always be much worse, but my goodness, come on 2011 - please bring us all good health and some peace of mind with all of our follow ups and fears.  My personal anxiety is running a little high right now....thank you all for being there.  And truly, you are the only ones who "get it".

Hugs to all, Tracye