Starting chemo January 2009?

Aw.....so sorry you have to deal with the lymphedema kmmd and brenda.  bummer.  My arm vacilates between numb and cold.  Last week a spot on my arm was itchy and it was one of those deep inside kind of itches and i really couldn't get rid of it.  It was enough to drive me nuts.

LOL, kmmd so true about how we structure our time ......

Kmmd, the LE thing is really a bummer.  It is difficult to know what your own personal limitations are.  I want so much to get back out on the golf course, but they say that is high risk.  I'm definitely going to try after my compression sleeve and glove get here.  I've waited too long already.  I'm not a really good player but I find it so relaxing and I love it so much I will not stop playing because of this.  It seems I have already given up so much, I just won't give thatup too.

I finished the therapy yesterday but it will still be a couple weeks before I get the sleeve, glove and Reidsleeve for nightime, so I am doomed to these ridiculous bandages until then.  My insurance will cover the garments and the special sleeve for nightime wear so I don't have to do the bandages so I am very grateful for that. 

I have such mixed feelings about the entire process.  On one hand I want so much to take the bandages off and see how long it takes for swelling to begin, bit on the other hand, I am afraid all ther therapy will be lost if I do that.   I really think more time should be spent explaining exactly what can happen with this.  I did not feel at all prepared for this.  While I knew LE was a risk, I had no idea what was involved.  I am thinking of starting some sort of campaign for LE awareness. 

I hope everyone is doing well.  Oh, my anniversary date is coming up also.  Oct. 15 was my dreaded call from the Dr. although I was pretty certain before that.

Kim, good to hear from you again.  Glad you are doing well.  I think we all still have our moments of grief for what we have lost but I am trying to stay positive for the future knowing there are many good people out there in much worse condition than I.  I am so thankful I found all of you during this time.   Thank you all!

Brenda,   I remember vividly the discussion where LE was brought up.  The statistics and brief recitation of massage, sleeves, limitations was accurate.  However, it didn't describe the reality.  But, that was also the same discussion with nerve injury, infection, possible chemo, radiation, may or may not be able to do recon.  With so much else going on there is no way the reality of living with LE could really be described.  Plus, what the heck else was I going to do.  No choice but to barge ahead with the surgery that caused it.

I think you're right, the fear and lack of knowing limitations is so hard right now.  When I look on some of the other threads, those that have been dealing with it longer seem to be doing better, I think its because they know.  One woman once said, yep, raked leaves yesterday, swollen today.  Hopefully you'll be back golfing and know what that does and how to treat it (or better yet it doesn't worsen anything), and getting back that piece of your life that is so important to you will be a huge boost.  For me it has been continuing yoga and some careful weight lifting (the jogging/walking doesn't aggravate it).  Knowing I can continue that and it doesnt' seem so far to trigger or worsen things has been wonderful.  It is long hours of repetative movements that seem to get to me.  When I can't rest my arm and know I need to.  This last bout had me pulling back  and was a killer.   Most of the time I'm luckier then most dealing with this and I know it.  Have to keep that in mind.  

Good morning to all you jewels, hope everyone is having a relaxing and wonderful weekend. 

Hi all. I made it through my first anniversary OK.  Because I got "The Call" on the second day of Rosh Hashona I an very aware of an anniversary on two different calendars, Jewish and Gregorian (that what we call the standard day to day calendar right?).  So today was my anniversary on the Jewish Calendar.  I did OK.  It probably helped that we were at my Inlaws and not home where I was last year. But I have such a vivid memory of the room I was in.  The calmness as I took in what I was being told.  The pain in my doctor's voice.  The confusion and anger of my son when I made him leave the room so I could take the call.  My husbands tears when I told him a little later in the morning after he woke up. He was washing the dishes and it really did not occur to me that the news would hit him so hard.  At first he thought I was going to die, but within a day he decided I wasn't and it got a little easier.  It is all so fresh in so many ways.  I did get pretty chocked up a few times in services. One prayer that referenced children crying out in pain during the holocast and the Kiddush, or mourners prayer.  I could not help pictureing my husband and son sitting on the pew alone in a few years saying that prayer for me. I wanted to imprint some sort of strenth on the moment to help my husband through that moment.  May it never come to be.  But other than that I handled it well.  I have sent in a request for a mikva date on 10/1, my anniversary on the other calender. 

I saw a woman with very very short hair at services and kept wondering if it was a hair cut or a hair grow, as I find myself calling my present style.  

All the talk about lymphdemia has my awareness up.  I had not really been thinking of myself as really at risk but i should be more careful than I am being.  I need to remember that risk when I decide how long to hold a pose in yoga or how much to push in any class. I need to remember that risk when tempted to over stuff my backpack or help my DH carry luggage to and from the car.  I have to remember that risk and ask about drawing blood or doing blood pressure on my legs instead of my arms, though I expect I will get an argument on that and not fight that hard. I just can imagine having to draw blood from my leg instead of my arm every three months for cancer blood work.  It just seems so odd and difficult.  But I should at least ask.  I forgot about that question at my appointment this week.  I also forgot to ask if there is anything I should be aware of when I fly to Texas this Friday.  I think that is only an issue if you have already had lymphdema but I am not sure.  

I hope everyone else is doing well and dealing with their anniversaries and lymphedema ect well.

HI Jewels:  Tomorrow is my first MRI/mammo since this all began.  Then the wait for results.  Hold a good thought for me....

Lisa, so good to hear from you.  Were you on Tamox before the hysterectomy?  Can't remember....I was just wondering if I had my ovaries removed whether Tamox would still be my drug or whether I would go to a different drug.  Anyone?

Hi Jewels!

I hope you all remember me...it's been so long!    It took me a while to find this thread which I'm hoping is a good sign that everyone is out living and enjoying their lives.  I can't wait to read back and catch up on everything.  I'm doing well.  Finished rads in July and shed my wig a few weeks later!  Now I have this pixie haircut that everyone but me seems to like...LOL.  Exchange surgery is scheduled for 11/13...hooray!  Ready to move on.  Forget all the other holidays, I can't WAIT for New Year's Eve this year.  Last NYE I was recovering from surgery, drains hanging out of me and facing the horrible unknown of chemo and radiation.  I kept telling myself that by next NYE it would all be behind me.  I can't believe I'm almost there!

Sending big hugs and love to all the Jan Jewels.  I hope everyone is doing ok!

Diane 

Kathy--Hope your mammogram was COMPLETELY uneventful/negative/good news!!! My first follow up of my remaining breast is tomorrow. They'll do a mammo, then the radiologist will look at it and decide if I need an ultrasound. I DON'T trust mammos, but my surgeon said they'll do an MRI next time (insurance issues I guess).

Phyliss--great news on your prognosis. I KNOW we'll be posting away decades from now. I'm 53 but feel younger, and am finally getting some energy back I'm taking the Ibandronate for the bisphos. study. Don't seem to have any SEs.

Lisa-good to hear from you and I'm so glad your surgeries are over! Keeping busy is a good thing.

Diane--good to hear from you too!!! Glad you're feeling great, and I am definitely going to have a better New Year's eve this year. We should all toast each other with lots of champagne (which I didn't drink much of last year). 

Renrel-Sorry last night was so tough. I actually took an Ativan last night for the first time in months. I REALLY needed to sleep through the night. Slept through til 5 am!!!, but that was so much better and I felt decent today, which I needed because I had a big meeting with a parent. Hope your niece is ok and not too scarred. Glad they caught it in time.

I drove my middle child to the airport for her trip to Oxford. She's going to London first, then Paris!!! I'm so excited for her, and of course telling her all the places to see. But then I cried when I hugged her goodbye. I feel so emotional these days, and I can't blame hormones since they've been knocked down by the Arimidex.

I forgot that working with Kinders is such a physical job. Besides the kid who bites, scratches, kicks and spits, there's so much up and down movements (and singing, acting, tying shoes). I love it!! And I think I'm burning some calories...But I'm really tired by Friday. I'm trying to balance my life more, but am also taking 2 classes across the bay at sfsu (and traffic is ROTTEN these days). I want to make sure I do at least one fun thing a weekend. Last weekend I went to a book reading of a psychologist at my old school. It was so wonderful, but I did cry through the 3 readings (part of a book called "Who's Your Mama")--emotional me again!

Diane, of course we remember you!! Nice to hear from you.

Berkley Kim, you too

Jilly G, me too, having a hard time. Totally overwhelmed and way too tired right now, working too many hours.  My boss actually asked if I needed to take a month off.  I think I need work to keep my mind off my cancer.  So, the only thing I can say is this just plain all sucks, all of it 

I can't chat much. I am at my ILs and the computer is in the room my 6yr is going to sleep in. I wanted to take a moment thought to re-recommend a book I recommended earlier but which is really right for right now for us.  After Breast Cancer : a commom sense guild to life after treatment.  It really deals well with most of the issues we are dealing with now.  I do find it hard to read just because I want to be done with this. But I am not and the book helps deal with that fact.

Have a good weekend all. 

Renrel

HI Jewels;

Mammo is negative!  Still waiting on MRI...

Stressing big time-- I lost the hearing in my left ear -- came on gradually over the past week  Saw ENT specialist today.  Started on steroids.  Pray they help.  Pray this is not a sign of something..  

Thanks kmmd, Lisa and Jess,  Your support means alot!

How weird is this. Third day of prednisone -- have the steroid jitters and am anxious as ever.  I think I am regaining a little hearing each day -- have another audiogram tomorrow - that will tell the real tale of improvement.  read that it can take 1-2 weeks to improve... if it improves.   Constant ringing/buzzing is a distraction. 

What next??

Jess... I have been taking Ambien this whole time... pretty bad insomnia before all this started... and it only worsened....it definitely helps... I'm trying to wean myself off of it now... but not having any luck... although I'm not sure it's addictive.. probably all in my head.. lol.. who knows.. I just decided it's not the worst thing in the world to have to take sleep meds... right?  Not stressing over it... sleep is way too important so I'm taking it if I need it...

Kathy... woohoo on the mammo.... I refuse that this hearing thing is anything serious... I know you are frustrated...   I'm sorry... it is really hard to not assume everything is connected to bc... really hard..... I hope your hearing returns fully SOON.

A word on Tamoxifin, my 2 cents and definitely not meant to scare anyone .. just to try and help everyone avoid what I have gone through... I was on Taxmoxifin for 15 months and a new cancer grew despite it.  I was NEVER offered a test to see if I was a good metabolizer.  Apparently I was not or... there was a reason it wasn't working....

And, after 3 monthly Lupron shots to shut down my ovaries after this 2nd bout with bc, a blood test confirmed it wasn't doing squat either... again, I was never offered a blood test to see if Lupron was working either by my onc.. my gyn randomly gave me a blood test for hormone levels and surprise, estrogen was normal.  Had he not done that, I would have gone along thinking Lupron was working also. 

okay, what's the point of my rambling........ don't let any doctor "assume" these drugs they suggest are working.. if there is a blood test to make sure... ask for it... no demand it.

In my case... it seems an undiagnosed case of endometriosis may have been the cause of Lupron (and maybe Tamoxifin?.. wonder if there are any studies on that connection) not working... because I fast-forwarded removal of my ovaries... and surprise I had endometriosis.. probably for a long time but who knew....

Hope you all have a great weekend... I hope I didn't bring the room down... if I could say or do one thing that would help prevent anyone going through this disease a 2nd time, I would do it.... once is enough!!!