Ohio Chemo Sisters

Diane - I am ready for Starbuck when Kelly gets back from Vegas!!!!!!!!!!

JoJo - sorry you have joined the club nobody wants to join.  You have come to the right place.  I felt the same as you when I was diagnosed June 10, 2011.   I found this to be a "hurry up and wait" thing.  I am from Canton, and all my treatments have been at Mercy - LOVE THIS HOSPITAL and the doctors.  My medical oncologist is Dina Rooney, and she is amazing.  I feel that all my doctors communicate and share info for my overall treatment, none of them work in a vacuum.  I did not have reconstruction (lumpectomy) so I do not have personal experience with that, the other girls can help.  Where in Akron do you live?  I work in the Kenmore area.  If you want to meet for coffee sometime let me know, I will be glad to do that.  It is nice to talk with someone who is walking the walk.

Debbie

Oh JoJo ....We had a Hawaii vacation scheduled in July 2011, that had been planned for a year, tickets bought, etc.  With my doctors blessing I went on the trip, and I have NEVER regretted it.  I got back on July 13, and had my surgery July 15.  All my docs agreed that 3 weeks did not make a difference in my treatment - but it certainly did for my quality of life.  My oldest son is in the Navy, stationed in Japan, and he met us there.  We enjoyed the trip together as a family on the big island, including zip lining, horseback riding - lots of fun.  I told my two sons about the BC at the end of trip, then came home and dealt with it. 

You GO ON YOUR TRIP.  You are still gathering data, seeing docs, getting second opinions.  You won't even have a game plan together by January 26.  It will be the trip of a lifetime.  Go ... BC will be here when you get back. 

Debbie

JoJo - I live in Cleveland and went to Cleveland Clinic. My breat surgeon was Dr. Jill Dietz, my oncologist was Dr. Halle Moore and my PS is Dr. Randall Yetman. I love them all. Feel free to PM me if you need any tips, advice, etc. - always happy to help out.

GirlPowerDebbie - that's funny! We had a Hawaii vacation planned too but unfortunately we didn't go. I was diagnosed in April 2012 and we were supposed to go beginning of May. I just didn't think I could relax knowing the surgery was coming. We are definitely rescheduling once my recon is complete!

I am in Lancaster, south of Columbus.  I am being treated at OSU at Stefanie Speilman.  My MO is Rachel Laymen, and my RO is Julia White.  I had my bmx at our local hospital.  Meeting with plastics at OSU in two weeks.  I am 33 and a mother of 2.  Daughter, age 9, and my little guy is 16 months.  

Wow it is so nice to hear from women nearby that have already gone through all this.  I've really like reading about all the surgeons, oncologists, and hospital options available to me.  It helps hearing that you've all had great experiences in many places & that I most likely will as well.  I'm still looking into getting a second opinion from another dr (possibly one of the ones recommended in these posts) before the appointment I have scheduled on January 16.  Right now I've been running around to & from different dr. offices collecting all my records.  Not a fun process, but one that needs done before I can move forward.  Although I do have some anxiety about waiting & not having surgery right away, I feel really good about trying to be as informed as I can possibly be before making any major life decisions.  As of right now I am planning on going to Hawaii as planned.  I agree with you Debbie, it will probably be a wonderful experience before coming back to deal with my "new normal".  

Good morning ladies!

JoJo - re the documentation ... I pretty much did what Diane did.  Started a spiral notebook and I take it to all my doctor appointments.  I write my questions ahead of time, and don't leave the office until I wrote the answer down, and sometimes the question opens dialog to other subjects.  I even took it to my all my chemo infusions & made notes then.  (Looking back my writing during those appointments is just awful, LOL!)  Further to the hand-written notes, I have a 3" spiral notebook with tabs such as Pathology Reports, Contact info, Insurance, Misc Lab Reports, Legal, Pre-Approvals, Genetic Testing, Chemo info.  I am now up to 5 doctors not counting the plastic surgeon I am seeing next week.  Putting stuff in a binder helped me be a little more in control of the information (can't control the BC but you can make some semblance of controlling the data).  Nothing in your doctors' files is a secret to you - you own that information - and they will all gladly give you copies of whatever you ask for.  Especially get copies of all your path reports.  If you end up with genetic testing, get copies of all that stuff.  Any medical procedures (your biopsies or other surgeries) - you can get copies of those from the doctor.  You can learn a lot reading this stuff, and internet research the stuff you don't understand.  I cannot tell you how many times I have flipped those spiral notebook and binder open and flipped to different documents ... it is in writing, and when the chemo-brain kicks in and you cannot remember stuff - there it is in black & white. 

Anyway, others may go about it differently but that is what helped me cope with the overload of information in the early stages when you are just trying to figure out what the helll is going on. 

PORT SCAR -- I am seeing a plastic surgeon 1/16 to look at my right, non-BC boob.  I am having a lot of pain at the incision site (I had the port out in July).  Feels like there are adhesions or something tugging into my armpit.  I have not voiced my fears to my DH - I am "sure" it is just from the incision ... but when I found the lump in the left side May 2011, it felt like this.  Tugging, and I find myself putting pressure on it to aleviate the pain and "protecting" that side.  I had doctor breast exams in December by both my onc and radiologist, and discussed this with them, and they both think it is the scar ... but I had to have my 6 month diagnostic mammo last week so I called Dr. Saadey's office and had them order a mammo on the right one too.  I see Saadey this week, and the plastics guy (McCormick) next week.  I  hope it requires nothing but a corticosteroid injection to soften the tissue around the incision.  I feel like an anvil is hanging over my head.  The shit just never stops. 

On a brighter note, I got significant relief from my feet neuropathy from Dr. Chen's acupuncture!  That really works!

Kelly - hope Vegas was awesome, look forward to hearing about it.

Have a blessed Sunday. 

Debbie

Congratulations! I remember how wonderful that feels. All the best to you.

Hey ladies.

I live between Dayton and Cincinnati...about an hour from C-bus and Cincy...if anyone wants to meet!

Tonya

I am better - I can make it!

I miss my hair.

Yesterday I was at the store, and I saw two ladies, clearly a mother and daughter.  The daughter appeared to be my age, mid-fifties, and she had my "old" hair-do.  Chestnut brown with foiled highlights, chin length beveled bob, little swoop of bangs to the side.  And her mom?  Well, she was rockin' the 'do I wear these days - the one chemo left me.  Short, gray, frizzy, about 1/3 the amount of hair I used to have (I had some really thick hair).  I will never be able to go back to my old style.  I mean, I make do with what I have, keep it cut into a nice short style, and people tell me it looks nice.  But it IS different, and reminds me of what I told my husband when I was diagnosed in May 2011 ... that I know this BC dance and when I come out the other side I will be OLD.  And I was right.  Don't get me wrong, I am VERY grateful to be here.  Every day is a gift.

But some days ... well, I miss my hair. 

Debbie

Diane -

I have been taking Biotin for at least 2 months.  Actually, my fingernails seem worse but I notice no difference in my hair.  It's just thin, but it DOES seem to be growing pretty fast length-wise.  I used to have to shave my pits every day, and my legs at least every other day.  Now I shave my pits once a week whether they need or not LOL! and I probably do my legs 2x a month.  Chemo just killed so many hair follicles.

For years I have had the same hair cutter, at Famous Hair by Wendy's on Cleveland Avenue.  She does a very good job with what I have to work with.   I have been thinking about putting a 6 week color on it just to see if the conditioning effects help, but I have not worked up the nerve to do it yet!

Thanks Diane.  Hope to see you soon.

Deb