first chemo done

Thank you Jill!  Each time I read one of your entries, I feel like you've stepped inside my soul!  It happened again...and the description of your relationship with your "cyber-sisters," (a name which sounds so impersonal)...could not describe the feelings I have with those of you on these boards any better!  I go to bed at night thinking of each of you...and I have far less time that I've spent bearing my feelings, worries, pains, joys and every part of this journey, than you all do, being "new to treatment."  I've wondered if there would ever be a time that one would have the opportunity to meet the people who know SO much about you....and don't expect anything of you..other than to share, help you commiserate, or - get on you! (which is easier from them, than anyone else on "the outside," no matter how much they love you!).  This answers my question...it is possible...and will happen! 

Oh My...I know that the feelings I have about my port will not go away for awhile, right Jill!  It still bugs me every moment of the day, no pain, it's just there...and I'm so glad   My second treatment was uneventful (getting used to herceptin visits...and neulasta will forever be my non-drug of choice, aches and pains), which is a good thing!  I did well until day 4, when diarrhea set in and didn't go away. I finally used Imodium..and rebounded, but had lost 8 lbs at herceptin appt. Needless to say, they were upset I hadn't called the dr and gave me extra saline. I felt great, just couldn't keep anything in...and since my mouth feels like a wad of cotton balls, I find myself not caring about food...a very bad attitude!  I'm doing the right thing now, brat diet, and am getting the weight back up.  Am wearing my wig and lots of hats, feeling ok about that.  I had 2 friends with devastating news about husbands this week...1 lost hers of a heart attack at 62 years, 1 found that her husband's brain is shrinking, no cancer, it's a rare illness and of course, fatal. I'm so relieved I have breast cancer...how's that for a positive attitude! 

Thinking of all of you and so happy for your reunion!

Hello, Ladies !

Nice hearing from you all.   I always enjoy catching up and finding out how folks are doing.

RonnieKay -

Sounds like you are having an interesting time.  Your post brought back a lot of memories.   And yes... NEXT time (hopefully there will not be one) call your doctor much sooner you have a problem like this - see... I am getting after you too.   I have found that most docs prefer you to be safe than sorry.   This is serious stuff, you know.  I know one person who did not call in (thinking she was just being a big baby) and ended up in the hospital because her counts were so low.  She nearly died !   Not trying to scare you, but rather if something does not feel right, then call - even if it feels minor.  If it is minor and they tell you to take ibuprofen or something simple like that, at least you AND YOUR DOCTOR have peace of mind.   Got it ?

As for the port... yes, it is a constant reminder and a nag, but one that gets better with time.  I hardly even know it is there any more, but I am glad when I have it.  Interestingly, I have used it for more than my treatments.   I had an endoscopy a while back and was in the hospital for IV antibiotics about two months ago - both times they accessed the port.  Even then it was much easier than having them fish for a vein.   This is especially true since I only have one arm to work with now. 

Finally, I am sorry about your friends' husbands.  You know, I have often said that if I had to get cancer, at least I got the "right" kind.  There has been so much research and so much progress in the breast cancer arena, I feel very grateful for those that have worked so hard to cure the epidemic.   So, I kind of understand what you are getting at there with your positive attitude. 

In any case, I hope you continue to do well.  It sounds like you got the right things working.   Also, you will find you will have a very nice collection of hats indeed when done with this - although personally, I am boycotting them now that I am done !  I could go the rest of my life without another hat.

Janet - Well there - tomorrow is the BIG day !   I will be thinking about you tomorrow.   I know this can be a tough surgery, but think about it... when you are done, you are done.   Let's hear it for that !  I can hardly believe you are here.  Just seems like yesterday you were starting.   Best of luck to you.   When you feel up to it, let us know how you are doing.

As for me... been busy, busy, busy.  I paid for having that week off  in terms of having to play catch up at work (but it was worth it),   Have been a traveling fool and getting darned tired of it.  But, I am in the home stretch of that big project I am working.  So, hopefully it will calm down soon.

The only other thing I have on my mind is that I have the oddest feeling when I go into the stores and stuff these days with all the pink breast cancer awareness things around.   Even the NFL players wore pink yesterday.  On my flight back from Denver last Friday, Delta had a promotion that you could "buy" the pink lemonade and contribute to breast cancer awareness.  My flight raised $192 (and they acknowledged me as a survivor - because I told them I was - that was a little embarrassing as I did not know they were going to do that).    You know, it is the strangest mixture of pride and anxiety.  I don't know why it makes me so anxious, but it does.   Does anyone else feel that way ?   I am going to need to sort through this one more. 

Anyway.. off to work.  Hope everyone is doing well.

Jill

Hi Ladies... yep, me too!  The pink makes me anxious too.  On one hand I am so glad that so many do so much to raise awareness and funds but the on the other hand it is a CONSTANT reminder this month of the "journey" we are on.  I had my bilateral mastectomy 9/16/08 so October came right after and choked back tears everywhere I went.  I keep contributing places but keep thinking I have contributed enough this past year.  It is a weird feeling and I am already growing tired of pink and it is only Oct 5th. 

I'm sorry I don't get on here much and participate...but now I need a little input from those that care to provide some guidance. It's been a year now (Oct. 6, 2008) since I had my lumpectomy followed by the chemo and radiation. Now it's like I am starting over. Here is part of what I have had to go through:

Have had seroma draining out of nipple (normal they say) since May. Had mammogram and all looked okay. Told seroma could last up to a year or even longer.

Now seeing blood in seroma so... 

Aug. 19, 2009 - appointment with BS about seroma/blood

Aug. 24, 2009 - Ultrasound

Aug. 26, 2009 - MRI Carol Milgard Breast Center

Sept. 9, 2009 - Appointment with BS 1:30...Called morning of appointment to double check since didn’t receive reminder phone call day before. I was told I wasn’t on schedule and they squeezed me in the next day. Brought in appointment card I was given for the 1:30 appointment. (2nd time this has happened)

Since both breasts had some new things show on the MRI I was told I would be receiving a phone call with appointment for Ultrasound biopsy.

Called BS’s office spoke to Lisa. She said they were waiting for MRI films and Sheri would be calling me with appointment.

Called Sheri and left message. No return call.

Called Sheri again and was going to be directed to voice mail but I told them that wasn’t working for me. Was then put through to Sheri. 

Sept. 30th at Breast Clinic from 7:45 a.m. to about 2:00 p.m. for Galactic Gram and ultrasound guided biopsy on left side (to see if seroma coming from nipple was same as big bunch of seroma sitting in left breast. Sheri said she would call with an appointment time with BS once results were in.

Oct. 1st - Sheri called and said to go back to Breast Clinic for more mammograms that didn’t get done day before.

Oct. 2nd - Mammograms done.

Oct. 6th - MRI guided biopsies done on left and right sides. biopsy Dr. said to call BS’s office Thus. (Oct. 8th) some time after 12:00 p.m. for results.

Oct. 8th - Called BS’s office and told even though results were coming in that morning for me Dr. was at funeral and would not be able to see me until Oct. 15th (maybe can fit me in Oct. 14th at 10:30 a.m. if dr is out of surgery). Dr. does not give results over the phone.

Oct. 9th - BS's office called and said they were going to squeeze me in on Monday Oct. 12 between 1:30 and 2:30 as BS would not be in the office on Oct. 14th.

Meanwhile I am going crazy! Both boobs are now bruised up. And all of this going on during Breast Cancer Awareness month. I no longer like the color pink.

Sorry...venting. Anyone else feel like they are falling through the cracks? 

Hello all !

Sewbutton - Hi.  Wow.  I read through your post like three times and am still incredulous.  I mean, given that you have been through breast cancer already, do they have no idea (and/or compassion) of the type of anxiety they are creating with their incompetence?   I am sorry.  But, what they are doing to you can only be considered incompetence.  This has been going on for months now.  Granted, the doc can't help a funeral, but that is about the only thing in your post that can be considered forgiveable. 

OK.. I am done venting, but you feel free to do so any time.   There are a couple of things you might want to consider.   First, do you like your doc enough to stay with him/her despite the incompetence of the staff?   Perhaps it is time to consider a change in doctors.  Secondly, you have a right to demand copies of ALL your test results.  They are YOUR test results and are NOT the property of your doctors.   Get yourself a binder and get EVERYTHING.  I have a binder that I take with me to every appointment.   If nothing else, it forces the issue, and if you have to change docs, everything is documented.  A couple of times, when something I was told did not jive with me, I actually referred to the tests from the past.  Imagine their suprise when I called them on it, (and was right).  My point is that the possession of the knowledge can help from keep you from falling through the cracks.   Third, a couple of months ago, I was being jerked around by several doctors who were selectively interpreting different test results to meet their own hypotheses.   I was so exasperated I could hardly see straight.  So.. I marched into my Primary Care Physician's office, and said I wanted ONE doctor quarterbacking this whole damn thing (i.e. looking at ALL the test results and coordinating all the other "specialists").  Turns out I had a hernia, which by the way, none of the other docs bothered to look for.   My point is, appoint one of your docs to act as the "quarterback" in your situation, and express that expectation to him/her.  You would be surprised how "empowered" that doc will feel - it plays to the ego a bit.

The bottom line on all of this is that while we should not have to do this type of crap, patient self advocacy is the only way to keep from falling through the cracks in this crazy system of ours.   I learned that the hard way.  It sounds like you are too.  I am sorry for that.  Please let us know what you find out and how you get this resolved.  I will be thinking about you.  Take care.

Shannon - How wonderful to hear from you - and thank you for your beautiful post.  You are right.  When you are in the thick of things, you don't understand how things are being perceived from the outside.  You are in a unique position to help us understand that, and for that, I thank you.  I am also glad to hear your Mom is doing well !   We are still herceptin buddies.  (Seems like I have been doing that drug forever).

Hope everyone else is doing well.

Jill

Well I did it !   Went to the "Making Strides" walk this morning.  What fun.  Lots of people (about 10,000).  Gave my little talk and accepted the sponsor certificate on behalf of my employer.   Then I walked for several miles (COLD this morning) and headed home - where I found my teen age children STILL sacked out.   Sigh... at least hubby went with me.   All in all though, a raucous time (did not think I would ever see the day where I was dancing at 8 am!). 

My new profile picture is "documentation" of my participation today.   And no.. that is not a giant zit on my face.  It is hard to tell, but they painted us survivors with a little pink ribbon (if we wanted it).  I thought anything that covers up at least part of my face could not be all bad.      Since I have not changed my profile pic in a while, you all have not gotten a glimpse of my wild and crazy hair these days.  Still can't see it in this pic, but at least you can see it flipping out on the sides.   I can't do a thing with it these days.   It is just wild.   But, at least there is hair !  I will take it.

Anyway, happy Sunday to everyone.  Hope things are going well where you are.

Jill  

Jill - great job!  I am doing the Making Strides on the 24th in my town, and I've not only got my co-workers, the Pursuit "Pacers" walking, but I've wrangled most of my family, including my mother who is making the drive down to walk, but my ex-mother-in-law (she and I get along better than she does with her son), high school friends and neighbors.  I am making shirts for my family to wear, I'll post a photo when I have them done and we're wearing them.

I am getting the crazy hair too - I've had a couple of trims in September for the makeover thingy, but  now it's growing again and is wavy and weird - thick but can't do anything with it.  I call it my "Kramer" hair.

Shannon, glad your mom is doing well and her crazy hair is growing in too!

Finally had my BS appointment yesterday. Everyone was apologetic, except for the BS herself. She was smiling when she entered the exam room, but the first thing out of her mouth was, "ah, my problem patient". Didn't ask about the experience or seem to care. Apparently she is very good at what she does and probably feels I am lucky to be a patient of hers.

Anyway on to the results...the right side 12:00 was good as was the left side 11:00. The seroma/blood "is probably" coming from the same pocket which she says is a very good thing. If they were NOT related to the same pocket she would want to remove the duct. I am to go back in 3 months or sooner if the blood worsens. Currently things are getting better.

I feel much better today knowing the results, but still considering maybe changing to the Seattle Cancer Alliance group. Anyone know anything about them? 

Again, thank you Jill and RonnieKay!

Hi there!  Glad to report that all is well here   My 3rd treatment, 10/16, went very well and the only thing that bothered me was the neulasta shot...again....oh how I detest that!  It really only bothers me for an evening, so I can handle it and with only one more treatment, 11/6, that will be a thing of the past!  It'll be me and my herceptin...I'm counting the days!!!  I've gotten through this part...which is why your posts are so valuable to me.  They are glimpse into the next year of healing & recovery! 

Sewbutton:  I am being treated at Seattle Cancer Care Alliance...and feel I am getting the best care possible.  When I read your earlier post, I so wanted to ask if you'd considered SCCA...but know it's quite a drive from where you are.  During my last treatment, I met a gal that's been driving from Yakima for treatment of a very rare blood cancer, for the past 2 years.  It sounds as though you received good news at your last appointment so, hopefully you have renewed confidence in you doctors.  Please let me know if you have any questions about SCCA.

Jill:  How wonderful that you have the opportunity to meet with so many interesting people..and THEY get to meet with YOU!  You are an amazing person, raising your family, fulfilling a very busy career and battling bc....it makes me dizzy!  I do want to tell you that I shared your reunion story with my September Sisters thread and we are already planning for next year's get together.  There are about 12 of us and there's no doubt it will be a wonderful experience! 

Have a wonderful week & lots of treaters, not trickers!

Well... hello there ! 

So nice to hear from everyone !   Sorry I have not written in a while.  I am up to my EYES in this big project of mine.   Next week is the BIG recommendation and the presentation for the big wigs.   If you all hear a giant yell from Cincinnati on November 4 at about 9 am... you will know I have completed the presentation and it was successful.   With all the flu going around I keep telling myself "can't get sick, can't get sick, can't get sick".  It would just figure if I got H1N1 or something like that right as the culmination of 6 months worth or work on the biggest project in my career is being presented.  Half of my department at work is sick.  I would bathe in sanitizer if I could.  

Anyway, I am sure that is is not so exciting for this group (just explaining the source of my stress).  What may be more exciting for this group is that I had my follow up mammogram last week (and they took LOTS of pictures) and was examined very carefully by the breast surgeon.  The great new is... ALL CLEAR !   Yea!!!    She said at this point, she will alternate mammograms and MRIs for subsequent scans.  Also managed to arrange a "two fer".   When she takes out my port (likely next March or so), she will also take care of that blasted hernia.  Two procedures.. one time going under.  Sounds right to me.    I also had herceptin yesterday.  Seems like I have been getting that forever.  But, STILL won't be done until next February because I missed that seven weeks and the ones I missed got tacked on the end  (kind of like homework - you miss it, you still have to make it up).  

Ronnie Kay - I can hardly believe you only have one more left.  Seems like just yesterday you started.  Wow !  That is wonderful.   I hated that darn Neulasta shot too - almost as bad as the chemo.  But, really a necessary evil.  Also, glad to hear you are planning the "reunion".  I really did find it cathartic to meet up with those that I went through this with virtually.   I hope you find it the same.   

Janet - I had been thinking about you and your surgery.  So nice to hear you doing well.  (Well.. about as well as can be expected after major surgery).   Wonderful news about the pathology! Makes all the junk you did worth it, eh ?   That has to be a huge relief.    Now be patient for that hair!   It will come.  Tell you what I found.. when I started getting kind of "wispy" things around my ears, I went and got it trimmed up.. and to my surprise it started growing faster.   Actually, my hair is out of control now.  If I let it get too long, I look like a young Michael Jackson.  Not a thing I can do with it.   Everyone keeps telling me it will relax over time, but it just seems to be getting curlier and curlier.  Anyway, see if the trim thing helps things move a little quicker.   Just watch out for that crazy curl !  (and .. my hair went out STRAIGHT). 

Well.. back to the grind.  Got to work on a big presentation tonight in preparation for next week.  After that I get a breather for about a week and then off to Germany for a week (no rest for the weary).   But, good to be busy! 

Take care everyone !

Jill

Ronniekay  -

How great to hear from you !  And many, many congrats on being done with chemo !  Nice to see your smiling face up there in a picture as well.  I am glad to see you got by without the Neulasta.  I really hated that thing (probably as much as you seem to hate your port).   Sorry the port bugs you.  I tell ya, after having it for over a year now, I hardly notice it any more.   Hope it will be the same for you.

As for me... yep... a big old whoop on November 4!   I cracked up at your comment in the post because right after I finished my big presentation, one of the General Managers used your exact term.  She called me up and told me I was a "rock star".  It really did go that well.  In fact, it almost went too well in that now I am up to my eyes not only in getting the big old project moving (now that everyone agreed to it), but also finding myself having to teach how to do what we did.  I thought I would get a breather after the presentation, but it appears to have just started.    But, I have to admit, I feel more energized than I have in years.   You know, in something that will sound really strange (I am sure) is that I believe one thing coming out of the cancer experience is a courage that was not there before.  I find I really don't sweat the small stuff as much any more, and I feel more confident to speak my mind when need be as a result.   That seems to be translating a bit in my work environment.  Who would have thought ?

Anyway, I am kind of tired tonight because I just returned on a 10 hour plane flight from Germany (plus another hour from Atlanta).   While I was in Dusseldorf I attended a very large medical convention for something else I am working.  Anyway, while I was there, I talked to some docs who are doing some research in the breast cancer arena.    There was even this one Japanese company that has developed an "at home" ultrasound to be used for self examination (no kidding).   Of all the stuff I saw there was one study that stuck in my mind.  This woman from the University of Maryland was working on a new prognostic marker and testing that upon measuring this marker, she could correlate the level of the marker to recurrence risk (similar to what the oncotype does).  But, the best part was that she has been able to show this marker can be measured in blood and accordingly, patients can be monitored with a blood test (similar to how men have a PSA checked for prescence of prostate cancer) .   After I met her, I looked her stuff up on line and she did indeed present at the San Antonio Breast Cancer symposium last year and to the Amercian Cancer Society.   While it is still very early, the early results she has generated so far look promising.   If her research pans out on a large clinical scale, this could be very promising for future generations of women.   In all, very exciting stuff going on - well, at least for us science types.  Guess I should get out more !    

Anyway, going to try to keep my eyes open for another couple of hours to get back on Eastern Time.   Hope all is going well with everyone !

Jill       

To All My BreastCancer.Org Friends,

I second RonnieKay's wishes and thanks.  This thread was God-sent when I was beginning this odyssey and as I progressed through it.  I've been on other threads, but I must say, this is the finest group of women out there.  You are all strong, smart and full of good humor.  You all genuinely care about each other's progress and set backs.  It was always refreshing to log onto this thread and see how everyone was doing, or read Jill's philosophical postings which always got us all to think. 

Perhaps we should take a cue from Jill and all get a little philosophical this week, and give thanks for what we have and especially WHO we have.  

Happy Thanksgiving to all.

Janet 

Good evening ladies,

     Popping in to see how everyone is doing and to wish a Happy Thanksgiving to you all. Hope all is well for everyone.  I am thankful this year to have found such a wonderful support group here.  And especially thankful for the clean mammogram mom had this week (yeahh!!).  Also on another personal note, found out that I am expecting baby number 2 in May. Lots of exciting stuff going on....          Thinking of you all as always.  Til next time             Shannon

Oh my...

I don't get on here for a couple of days and look at all the news !  Wow...

First, Shannon - Yipppeee!!!  Wonderful to hear about Baby number 2.  What a nice thing to hear about in the midst of all the derision about breast cancer.  Kind of puts things into perspective.   I had my second child during the month of May (although several years ago now).    May is a wonderful time of year to have a baby - right when spring comes into full bloom.   I found the whole thing very symbolic (I know, kind of strange for a science type).   Anyway, I am very happy for you - both for this wonderful news and for the clean test on your Mom.   This is a great way to enter Thanksgiving, eh ?   Truly much to be thankful for.

Janet - Hey... great to hear from you too !   How is your recovery coming ?  And the hair growth ?    Thanks for your compliments on my philosophical posts.  I got another one churning around in my head that I am just about ready to assemble.   It has to do with what a difference a year makes and the transition into "survivorship".  But... need to think it through a bit more.  

 Ronnykay - Thanks to you for your kind post.  We have all leaned on each other through this.  That has been one of the few bright spots of this whole experience - the support from others going through the same thing.  Not sure what I would have done without it.  

So... with that, I am truly thankful for all of you - the smartest, kindest ladies on the board.  Here is wishing you and yours a wonderful Thanksgiving !   (I will be up to my eyes in relatives tomorrow - and LOTS of good food). 

Jill   

Hi All!  I hope this finds everyone doing well.  I am trying to gather some information on followup treatment.  I know everyone is different but I am curious.  I had Stage 1 cancer with no node involvment.  I opted for a bilateral mastectomy.  I finished chemo in Jan09 and Herceptin in Nov09.  So now I am antsy about catching it if it comes back.  My Onc doesn't feel like alot of testing is necessary.  So I see him every 6 months and do bloodwork.  Of course I am suppose to follow up on any symptoms, aches, pains, etc.  Anyway, I trust my Onc and he is a leader in the field.  It just makes me nervous that we aren't doing any scans, tests, etc.  I am curious what others are doing.

Hugs to all!