March 2009 Rads Group?

Well jeez it's so nice to know that I ain't the only one who feels connected to this thread, these other women.  I haven't said much in a bit (well there's a big surprise!) and was afraid anyone would think I had abandoned this special place and people.  Far from it.  I posted a big long post the other day and then deleted it out because it was too much to load on y'all.  But now I see how much we have in common in all this, so maybe its not so much of an imposition as a shared experience.  I hope so anyway.  I hope that if I ever write something that brings any of you down or makes you feel bad that you will chalk it up to the vagaries of the internet and how things sometimes come off the page much different than how they were written.  Or just me being stupid sometimes.  

As the current canary in the Tamoxifen coal mine (in that I need to take it and will in September but currently am not so all my "symptoms" are mine and not attributable to Tamoxifen chemically, but perhaps emotionally) I can tell you that fighting off unusual depression is happening to me and not due to Tamoxifen.  Hey- we have cancer.  That's plenty right there.  (Or we had cancer, as far as we know we don't have cancer, but we might have cancer blah blah blah... hey- depressed yet? ) So maybe there is Tamoxifen depression, but even if there isn't, there's plenty o' depression around anyway for us...

Jessee54, gosh I missed you.  So glad to hear from you and so kind!   Here I was (and I guess always will be) wondering if I had said too much, but if I am expressing something that helps in any way, rock on.  The deal with Tamoxifen is that they have conclusive evidence that recurrence rates are cut by a third if we take it for 5 years AND are ER+.  Someone here on BC.org is a triple neg and taking it and I can't remember why.  Maybe the "it couldn't hurt" type thing.  More on Tamoxifen: if we're postmenopausal its better to take an Aromatase Inhibitor instead of Tamoxifen but both are considered "Hormone" therapy.  Tamoxifen is blamed for a lot of side effects but great big huge long term studies show that women in the placebo group had the same side effects... so we're always wondering, is it the Tamoxifen or my usual body causing this.. much like is it the chemo, the radiation, the cancer that's causing something that we then look at our non-cancer friends who have the same problem. The two things that are actually known side effects (for sure) are hot flashes and vaginal discharge.  Oh fun fun fun!  The good news there is that if we are actually having the hot flashes then the recurrence rate is even lower.  Woohoo, good times!

Mary, you do so much in a day, it makes me tired just to think about it!  You crack me up.

So... as it turns out from your posts what I deleted was actually kinda on the same points...   Here's the deal...  I am 49, and when I was 8 I had a best friend.  When she moved to our nabe there was someone new to be beat up on the playground instead of me.  We tried not to be friends but got along so well, hiding in the library during recess.  For 20 years we were closest friends.  I am a nice Jewish girl, she a complete WASP.  Very different but the same inside.  Special.  At times we'd separate to address growing up and stuff, but then we'd come back together. I blame her for my period coming when I was 11 (risk factor) because she was 2 years older than me and we got it on the same day.  She called to tell me, then I found it and she thought I was making it up to be like her.  In college we did what co-eds did in 1978, and her boyfriend got her pregnant and they married.  Again, our lives were very different, she struggling as a young married with a baby and an irresponsible husband (Art History major, OK?) me unhappily single and coming from a family of means. When my fiance walked out on me, I practically moved in with her and her husband and kid.  Instead I moved to NYC and got an apartment convenient to her workplace so we could have lunch before she commuted home to NJ.  I was not a stalker, it so happens I had other friends in the nabe and other things to do, but this was my best buddy in the world.

One evening the 3 of them were at my apartment to use the building's swimming pool.  Her 4 year old daughter was stll in her wet suit and started to fool with my VCR.  I snapped at her "Don't Touch THat!".  Her mother picked her up, grabbed her hubby and walked out of my life.

Seriously.  I went into all that detail because, yes, that's it.  There was a phone call here or there, but that was the last time I saw her, by her wishes, and I never knew why.  I always thought we'd come back together.  One day she did call me, within a year or so, to tell me that her husband had cheated on her.  I tried to help and was happy to hear from  her, but she cut me off.  I never heard from her again.

That was about 1993 as far as my other long-time friends and I can reckon today. I have another friend since I was 11 and another since I was 18, so they all knew her.  In 2003 my mother died of complications of MS.  As we lived next door and were friends all those years, of course our families were intertwined and her mom and my mom were friends, her mom was also a nurse, her mom visited my mom for years in the nursing home, and my friend adored my mom for a lot of reasons.  There was no word from them when my mom died.  OK, I figured they didn't know.

In 2007 I got an email from her husband, sort of looking for her.  He was now not only her ex-husband, but also the ex-husband of another, and father of more.  He was by his own admission quite a f*ck up.  Also a financial drain.  Hey, I knew this guy in college, he was messed up then, his family a real wreck.  He explained that she had thrown him out of her life as well, and that he rarely got to see his daughter.  He was getting in touch to let me know that my friend's brother had died.  My take on it at the time was to side with my friend. Googled a bit and easily found her blog, so he must be stupid as well not to be able to find her.On her blog I saw that she had just moved to San Diego from Philadelphia, and was living with a great guy- I think she dated him in high school.  Her daughter was in college and in Tokyo and her mom was there and she was happy she had finally gotten a diagnosis for why she was tired all t he time.  Chronic Fatigue Syndrome I think it was.  She had always had health issues, always very dramatic about it.  At eight she would talk about her heart murmur and how she fainted all the time, how easily her slender fingers would break, yada yada.   I was planning my son, so I was very happy then too.  I took the opportunity to reach out to her, and posted on her blog as a comment that I missed her and wished her and her family all the best and I'd like to be in touch and how to reach me.

No answer.  Again, maybe i posted it wrong, i am not good at blogs.  I certainly did not pass this information to her now-ex screw up hubby.

I got a little busy with the baby and then the cancer.

Sunday I was getting ready to go out with the baby, and it was already a big production.  It's new to be traveling with a walking child, and I rubbed some skin the wrong way on my boob so it hurts, and I do still have that frikin fatigue so getting him fed and cleaned and dressed and myself as well was something, plus packing our gear... and I stopped ot check email.

There was a letter from her ex husband saying that my friend was dead.  He went on to complain about how he wasn't told even by his daughter and how if i contacted her family I might be allowed to attend the funeral. 

I set about checking to see if she was actually dead, or if this was another red herring like 2007 when he thought her brother was dead.  Well yes, she is dead.  She died the day after my birthday, May 15.  I read up as much as I could about how she died and why.  I read the rest of her blog, which referred to another blog she kept about her medical condition, but i couldn't find it.  All I could find was that in 2007 she was diagnosed with MS.  (Maybe the CFS was misdiagnosis? It would be one of many for  her.)  Of course my Mom had MS and she knew that, and I posted on her blog then and she still didn't reach out?  Not that I could have cured her MS but...

Then I read the drugs she is taking over the months and years and it sounds like drugs I have read about here... Lexapro... and then she's getting radiation... radiation for MS?  January 2009 she goes for a PET scan and then she mentions her prognosis is "grim".  Her obituary says she died of "cancer" after a long battle.

What?

Was she misdiagnosed with CFS, then misdiagnosed with MS when she had cancer?  Or did she have a cancer back in Philadelphia where she mentions her neurologist misdiagnosed her for 8 years previous?  What kind of cancer?  

What does it matter? What can I do to help? What could I ever have done to help?  Am I the kind of friend we've been saying is fit to be cast out for not being helpful to a friend who had cancer? 

And the ANGER I have for her leaving, and the sadness for what she did, how hateful it was, to go these 20 years ---- what... without me?  What's so wrong about that?  I guess if she preferred to live without me, and never wanted to chat and laugh about the things only we knew and remembered since we were 8?  You understand, by the time we were 12 our moms decided we were too old to play with Barbies so they took them away but we hid some and then they took them away too and then we... oh what does it matter? And if I could speak to her daughter, my god-daughter and tell her about some of those fun times we had when she was too young to remember or what her mom was like or...

She died of cancer?  

Even when she was dying she still didn't want to reach out to me?  There's nothing to do now. As you can imagine, this has brought up a lot of stuff for me to deal with.  Most of those questions are rhetorical.  I know I was a good friend, I know I was there for her, I did reach out to her.  I think at the bottom of it I just can't accept that anyone could turn their back on love- forever.

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Meanwhile... my new friend in the building was diagnosed with breast cancer 5 days after I met her.  She has DCIS and I was all happy that I could at least help her with what I had been through, but after I speak to her both of us end up freaked out about something the other one said.  Currently she's deciding between a double MX or lumpectomy and struggling with the statistics and the new lingo "recurrence" "longevity"... and she's a surgeon! Hey, don't feel bad you don't understand something, no one gets this crap until they have cancer.  NO one.

Meanwhile, she's trying to figure out how she can get her radiation in the morning so she can keep a full schedule of seeing patients and doing surgery during radiation.  I tried to tell her.... hey... just belly up to the bar and accept that you are going to have to take some time off work, there is fatigue etc... but you know, she thinks she can beat it... like I thought i could... and yes, there are women on this very thread who had no problem... so I hope that's so for her!  My RADS place also does the 3 week program if she wants.  I wonder if their fatigue and burns are less? 

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The last couple days when I have a nanny I go back to bed as soon as she shows up and sleep until 2pm or later.  I can't get anything done and I end up staying up late and perpetuating it,this late night cycle which is the same problem I had before BC.  But then I would wake up and run all day from 6am.  I canceled my DDS appt in Philadelphia for Wednesday, there's no way I could make that 2+ hour schlep with the baby, have a DDS appt, meet with friends, and drive back to NYC.  Not worth the risk for clean teeth.

 eh, I am still a mess over the thing with my friend.  can't think straight.  

oh and my frikin period is (I am sorry for the graphic expression here) dribbling into the 3rd week.  no chemo, no tamoxifen to blame, never had a problem before. 

Rachel..man such a bummer about your friend. I echo jessee - it's obviously not in your nature to abandon your friends.  

By the way...the period thing...you started when you were 11...and I am presuming that you have never had biological kids? Well if that's the case you are very probably starting peri-menopause.  I started my period when I was 11, never had kids and started to "go through the change" when I was 38 - finished that whole business and was post meno by about 48.

Ya know...reading your posts...I think you could easily write a book about your whole experience through this journey and what you learned.  I'd buy it in a heartbeat cos I know while it might make me cry in parts, it would also make me laugh my ass off!!!

Rachel, what a sad story. I know how it feels to be abdandoned by friends. Only mine was my family. After my mom passed away in 77 (just before I turned 10), her family decided that they did not need us in their lives. We did after awhile send Christmas cards. Once my grandmother contacted us when she was in Florida( i lived in Clearwater for 14 years as an adult), then nothing. Then two years ago out of the blue my Aunt Bonnie called looking for my dad, because my grandma died. She only wanted info on the cemetary plot to bury my gma.( my dad bought 4 plots when my mom died, 5 months later my mom's dad died so my dad gav2 plots to my g-ma). WHen I left a message w/ my aunt that my dad had dropped off the face of the earth she never called back.( little did she know I had the info she needed). Mind you I wrote my Grandma and asked about family history and kept in touch w/ my aunt Bonnie. Boy now I am dumping on everyone. It just seems like we all have similar backgrounds.

I got my period at 12, had my first child at 30 1/2, my second at 33 1/2 and my third 371/2. I breastfeed the first two for the first year. The third I was under too much stress( hubby was in Iraq). I went for my first mammo at 41 and that is when the cancer was detected. Lucky for me the music teacher at the school where I work had breast cancer last year( not lucky for her). She had a double mast., chemo and rads. She is getting hysterectomy and reconstruction surgery this summer. We vent to each other from time to time. She was wonderful to talk with.

As for all of the common symptoms, not that I am an expert, but how many of the symptoms are the meds and how many are depression or post traumatic stress disorder. Think about it, we have all been through hell in one way or another. I have many of the same symptoms my hubby has and he was dx w/PTSD after serving 18 months in Iraq. Not to discount the drup se's but just look at all we have been through. I was afraid to tell my family I had BC, because my aunt and two uncles had serious health issues and my 18 yr old nephew is going blind. I did not want to further burden my family, but in the end they all supported me from CA, FL, TX, and MI. Of course my hubby's family did not even help with kids while going through rads. My sil was laid off, she could have come over and put the kids on the bus for me and take the little one th daycare.

Boy now I am really venting.

Nelia where in FL do you live. I lived in Oldsmar, Clearwater, Largo and New Port Richey. I graduated from the University of South. I moved to the Poconos in Aug  1999.

Thanks in advance to anyone who actually reads this post. This is better than writing a journal. I guess I should figure out how to start my own blog to vent.

Hope all is going weel for all of you wonderful ladies! WE ARE SURVIVORS!!!!!

I forgot, I go to the genetic counselor to have my blood work done to see if I have the BRAC or BRAC2 gene. Aside from my mom dying of ovarian cancer, my dad's Gma died from BC at 38 adn his aunt was 33. I am nervous, but want to know for my girls. I want them to have every advantage.

Opps one more thing finished my rads at the begining of may and you won' t believe this but I am STILL a red crusty oooozing mess!  Redness was just at first a big oval around my mastectomy site, then the oval started to fill in about a month after rads were over!  Who Knew!  I guess for me it will take 2 months to be over this! 

Today I made some time to go outside in the garden with my kid.  He's walking and trudging around the garden and I am watching him and playing peekaboo and calling to him when he gets too far and worrying if I am not close enough and then he turns to me with a smile and runs at me with arms wide... and i am thinking oh my G-d I am so incredibly lucky I get to play with my kid and hold him in my arms.  Is this really my life?  Is this really my son?  Trying to treasure every nanosecond of his life and my great fortune to have him, and him be happy and healthy.  Mostly healthy.

I was talking to my therapist- she was my therapist for IVF (and no surprise I was calling her after this weekend right?) and I said to her remember, when I first came to you, even though there was all that crap going on (lots of crap, lots and lots of crap) I said all that mattered was my health and my kid's health.  And she averred. Absolutely that was all I cared about really, so I was happy. It's only as i write that now that I have my "eureka" moment.  My happiness was based on the fact that I was healthy.  No wonder I am fighting depression now.

Rachel--it's good to see a lot of positives come from your story.  I'm glad that you'll be able to attend the funeral and everything that allows you to maintain a relationship with your god daughter.

Nelia, couldn't have said it better about the friends issue.  And at a certain age, if you haven't been disappointed by friends, then you haven't let them touch you on a personal.  It's how you handle the disappointment that says more about you and the value you place on it.

And I know that I took for granted the "at least you have your health" mentality.  Intellectually believed it, but this past year...yeah, it means a lot more.  But I've also learned this past year that when you get to a certain age...and sometimes even before that...that EVERYONE has health issues.  Being "healthy" is a relative term.  Now I'm more appreciative of being as healthy as I can be.

Right now as healthy as I can be also includes dealing with PTSD and also a bit of post partem depression.  Let's face it...we all want to get back to feeling as close to we did before all of this...but not a whole lot of time has passed at this point where we are going to be at that state.  And time  and distance from all of this will also have a healing effect.  Toady I'm just enjoying the fact that 12 days after rads completed, I had an afternoon of energy where I was able to get things done that I seriously doubted I could have yesterday...and even cranked up the music and danced while I did it.  Tomorrow, who knows, but I had today, and I know there'll be more of them...in time.

Mary, I love the new avatar!  I was just reading about the casinos in the poconos... hmmmm

Samantha- well, you are ahead of me so I can't tell what really works. For yourself, it costs you nothing to believe you are going to be recurrence-free.  I know Melissa Etheridge was Stage II, when you look at her do you think she's going to have a recurrence?  She's playing in Atlantic City in a couple weeks. Hmmm Mary?

And what reason is there to think that your wife would have it?

When is your check up appointment?  Do you get the results quickly?

If there is no actual reason you haven't mentioned that would lend you to believe these things, especially the part about your wife, then it's your mind messing with you.  Got some Xanax or other mood alleviating drugs?  I say, if it doesn't do you any good to worry, and especially if you can see you are working up a needless worry, it's time for chemical intervention.  Spend as much time of your life HAPPY as you possibly can.  

If your check up is clear, you will be happy you didn't waste time worrying.

If G-d forbid there's a problem, you will be happy you took advantage of the blissful ignorance when you could. 

I am still tired too and I finished rads 3 weeks ago.  I used to nap during the day..maybe I should go back to that.  Is anyone else tired after being done with rads?  My skin is looking great finally.  It is like new baby skin.  Just have a lil of the hyperpigmentation left, but, it seems to be vanishing.  I am still using the cremes.  Is anyone else still using them?  Hope you all have a great night!  

nelia- I think she knew 1000% that I would no way reject her, and yes I do know how it may have been her not needing to complicate her situation once she was sick, I have even thought that she may have felt that reconnecting with anyone from the time her hubby was around could have given him an way back in, although that would be a hella stretch... and my G-d, 13 years?  I think I will find out on Saturday.  Most important, the way her brother spoke of how her daughter specifically asked for me.  That speaks major volumes. Before I was welcomed I was most destroyed by the idea that I would have no one to share memories of her with, that our shared childhood and growing up meant nothing to her, and that I would never have the chance to tell her daughter our special things.  I got that back, and i am grateful.  I lost her forever, but I wonder how much of her is in her daughter?  So far, a LOT!  

They didn't know about my Mom dying, so it's possible they didn't get my message(s), this could be a really sad cock-up. You could be right, although it would stun me, that she may have thought I didn't want to be in touch with her.   But- my 9/11 training so to speak has taught me about being grateful for who we have with us today.  

After 9-11 I also had what I call "Go See Disease". I was always going to go to the top of the WTC, there was a good club there where I should have gone to meet guys and stuff, not to mention the view.  But it was never the time to go, too much else to do, too lazy... after 9/11 I realized that opportunity was gone, so any time I had the chance to "Go See" something I hadn't seen before, I went.  Now I still go, but with the kid and the radiation fatigue, it's a bit harder.  

On the music, my friend's brother gave me a link to a song one of her friends wrote for her, and of course it shares a lot of what we're talking about.  Here's the link to the song, its the one called "Blink of an Eye" .  

The letter, aside from being cathartic for me, is also something I can show her daughter at the memorial, something tangible from her mother's childhood, almost a calling card for me, and to show her how much I cherished her mother that I would keep it for 39 years. 

Nelia, I am so sorry to hear that you are tired too.  How long have you been done with rads?  And, I am happy that your skin is looking great too.  Remarkable, isn't it?  It does look and feel like a baby's skin.  Thank goodness!  lol 

And, glad to hear that you are still using the cremes.  I used them right from the start and will continue for awhile yet.  Myradiation oncologist told me to when I first met him. 

 Hope you get to feeling better soon!  Just glad RADS are done! 

Yeah!  What Jessee said!!!!  One reason I am not thinking of writing about my experience with cancer is because I love that book, Five Lessons I Didn't Learn from Breast Cancer- she already said everything I would say, and mo'better.  She talks about the "temporary immortal"- like we were before diagnosis.  I just read another great story in today's NY Post about a guy who got a surprise brain cancer in his 40s, and he's now gone, head of a writing group wrote a great little note about being gone. My high school reunion shows how many we have lost from our small class, and one of the gals' kid has bone cancer- not to mention my friend whose memorial I will attend Saturday, and my friend who was recently diagnosed with BC went to her Harvard reunion and was stunned to see what was going on with her class health-wise. What I am saying less well than Jessee is that everyone walking around is at risk, maybe for worse stuff than breast cancer in the boob.  And ours was found and we treated it.