Ohio Chemo Sisters

Eileenohio

JoJo-   I live in Solon Ohio a suburb of Cleveland.  I highly recommend  University Case Medical Center Seidman Cancer Center. I had my surgery at the Main Campus Downtown,but had my chemo ,radiation and herceptin at Chagrin Highlands in Beachwood Ohio ( a lot easier then going downtown) . Imo they are tops in their field. If you want any additional info PM me.   The unknown,the waiting and the stress are all so scary.   

Best wishes as you begin this journey of uncertainty.. 

GirlPowerDebbie

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

jojo69

Debbie, I actually live in Orrville, near Wooster.  I really like my Wooster surgeon that diagnosed me, but I just feel like I need to go to a hospital where they do these surgeries more frequently.  I'm pretty sure I am going to go the route of bilateral mastectomy because I have cancer in one breast & ADH in the other.  I'm just so confused by everything right now.  I just want to get started & figure out  what I'm dealing with.  All I know right now is I have IDC & I'm ER+PR+HER2+.  I have no idea about grade, size, stage.  It's so hard not having complete information & then having to wait so long to find out.  And to top it all off, we have a long awaited Hawaiin vacation planned for January 26-Feb 3. So, even after getting my second opinion I have to decide to either wait til I get back to have surgery or cancel my trip to deal with everything!

GirlPowerDebbie

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

ohio4me

I went to Summa Barberton Hospital, Parkview Cancer Center. My breast surgeon is Dr. Lee Anne Sprance and my oncologist is Dr. Sandra Hazra. My sisters and I are all in the healthcare field (sister is oncology nurse) and we would all recommend this facility and these physicians. I was diagnosed April 2011, had bilateral masectomy (2 surgeries), chemotherapy and radiation.

I was referred to Dr. Sprance by my family physician. I never had a second opinion. I am a mammo tech and have 'lived' the whole breast care regime for years. I was very comfortable with the decisons made by my doctors.

Would be glad to talk further if you want to PM me.

Diane

roadwarrior28

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!

ohio4me

Jojo - I read your second post after I submitted my reply to your first post .

Drs. Sprance and Hazra are in the same building and work closely together. I also saw Dr. Pennington, a plastic surgeon, at Crystal clinic out on Rt 18 and I-77. I did not chose to do reconstruction. I'm just flat and free

There are many good doctors out there at Aultman, Mercy, Akron City, etc. A very important factor for me was trusting my doctors - and I do.

Like Debbie said, a few weeks probably won't make a difference in the long run. Do whatever you feel comfortable with doing. Being a mammo tech, I was pretty certain I had cancer when I saw my mammogram. It was six weeks before my biospy. I had a two-week work trip planned and got 'the call' while at a customer site. I knew it was coming but I made my choice and, like Debbie, have not reqretted my decisions.

Good thoughts and hugs coming your way as you begin this journey.

politicomama

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.  

Kelloggs

Welcome Jojo and Politicomama...sorry you have to be here.  I live in Canton like Debbie and I went to Aultman.  I love, love, love all my docs.  My BS was great (Dr. Saadey) and I love my oncologist, Dr. Trehan.  She is wonderful!  I had a lumpectomy so I can't really speak about a PS.  Just make sure you are comfortable with whatever doc you choose, the relationship will be a long one so you need to have that bond.

Diane and Debbie - yes....Starbucks when I get back sounds great!  I will message you both when I return and we can set it up!  I plan on taking in all the sites, not much of a gambler.  I will be watching the fountains and my big treat is that I made reservations at Scarpetta, the Italian restaurant of my favorite "Chopped" judge from the Food Network.  We will be eating there Saturday night, can't wait!

Diane - I never went to the LE clinic at Aultman but I did talk to them several times and they seemed wonderful, particularly Kim.  She sent me to Drug Mart and I was very happy with them as well. No appointment was necessary for my fitting and the sleeve came in within 3 days.  They billed my insurance so no cost for me!

$5 on red, Vegas here I come!

jojo69

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".  

ohio4me

Jojo - it sounds like you are thinking things through and that is a good thing. It can be a bit overwhelming with all you learn. I bought myself a spiral notebook for 1) listing all my doctors and phone numbers in one place, 2) dates of my visits and tests done, 3) questions I wanted to ask each doctor. I would sit down, open my book and not leave my questions were answered. I always had someone with me at each visit that took notes. Even with a medical (mammo) background the info got a bit muddled at times.

I asked for copies of every test/lab result and carried those from doctor to doctor so I had them if needed. I may have been a little obsessive but I needed to have control of that information - it was the one thing I could do.

You have many good choices. My sister is an oncology nurse at Aultman and speaks highly of those doctors. I went to Barberton and loved it there. Choices are good.

Diane

GirlPowerDebbie

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

kidsandlabs

Tomorrow is it. Last Chemo day, Mission Completed!

ohio4me

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

sewingnut

WooHoo Kids&labs. Now the hair watch begins =;0)

Kelloggs

kidsandlabs - Woot woot!  After the SE's subside, treat yourself for reaching this milestone! Congratulations!

Debbie - I see Dr. Saadey this month as well.  I got the lovely pink envelope in the mail last week so I go in on the 17th for my bilateral mammo.  UGH!!  I know just what you mean about the anvil.  I feel really good right now and it seems like I am just waiting for the other shoe to drop.  Do we ever get past that feeling?

Diane and Debbie - I'd love to set up another "coffee date" so we can catch up.  DH and I had a blast in Vegas!  Didn't win much though so we had to come back to work   DH got me a membership to the NCanton Y and tonight I am starting with a yoga class.  I will be starting the Living Strong program as soon as they have an evening class available.  I have got to get this lazy butt back into shape!  Anyway, I digress....ladies, let me know when and where and I'll be there!

ohio4me

It will have to be next week - I have been down with a fever for the last five days. Can we plan on Weds or Thurs and confirm the first of week? I really want to meet but need to make sure...blah...blah.

Yes, I have a 'touch' of the flu (had the flu shot). Yes, I have a bladder infection. On antibiotics, sending out for culture and sensitivities. Yes, I am on antibiotics. If fever persists at same level I head out for blood cultures on Saturday.

You know - some days, especially those when a fever has worn you down, this just feels like crap. I mean, even a cold puts my life on hold anymore.

I am still determined 2013 will be a good year

Kelloggs

Oh Diane, so sorry you aren't feeling well.  It has been going around lately.  I hope you feel better and don't need to have blood cultures!  We can definitely plan next week, at least that works for me.  I am pretty flexible so just let me know when you feel up to it and we'll get Debbie's input too!  {{{HUGS}}}

GirlPowerDebbie

Kidsandlabs ... YAY!  This is a day to celebrate!  My last one was 12/27/11.  I remember all my chemo dates.  That is sick.

Kelly & Diane ... let's tentatively plan on Thursday but ONLY if Diane is 100%!  I am running around the office with Purell trying to fight off the germs.  I have not been sick since I was sick, if you get my drift.

JoJo ... you are welcome to join us at Starbucks on the Strip in Canton next Thurs if this works out with Diane.

Kelly ... I saw Saadey yesterday ... both boobs are clear!  I see him again in 6 months and I do not have to have mammo again for a year.  Yahoo!

Enjoy the warm weather, wash your cars this weekend!

Debbie

Kelloggs

Debbie - Thursday works for me....what time??  JoJo, absolutely the more the merrier!  Diane, I hope you are feeling better!

lemon68

I live in Lake County just east of Cleveland. My surgeon is Dr Petraiuolo at Lake West in Willoughby. Once I have the sentinel node surgery 1/24 I will get treatment at the Siedman Cancer center in Mentor.

You are all an inspiration to me, thank you.

TonLee

Hey ladies.

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

Tonya

GirlPowerDebbie

OHIO4ME ... Diane, Thurs 1/17, Starbucks on the Strip, 5:30p - does that work for you?  I have Kelly and myself confirmed.  I hope you are feeling better and can join us.  I also let JoJo69 know too. 

Anybody else up for coffee in Canton tomorrow after work? 

Deb

ohio4me

I am better - I can make it!

ohio4me

I am going to back out - need to take a trip south with my sister. Please plan another time and I will be there next time.

Kelloggs

Diane - we will miss you.  We'll have to plan another one soon. So glad you are feeling better!

kidsandlabs

Chemo was two weeks ago, stubble has started growing. Bring on the eyelashes and eyebrows. BRCA testing was done Tuesday. Waiting on the results.

GirlPowerDebbie

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

ohio4me

Debbie - I understand. I used to have thick hair but it was fine. Now it is thinner and baby fine. And - it keeps getting thinner the longer I take Aromasin. Many women on the Aromasin board report good results taking Biotin. It could take 2-3 months to see results but apparently it does help with hair/nail growth. It's two months before I see my MO to get permission to take biotin and then 2-3 more months before I see results....... hmmm.

This morning I was thinking of cutting it all off again. Not bald but short - like Jamie Curtis or shorter. But that may reveal bald spots I am not aware of. If I cut it too short and there are bald spots then what?

I think I need to find a good hair dresser - not the walk-in kind - that will work with me. Do you go to the same person for you hair cut? Is she in Canton? Is she good with chemo challenges? My previous gal is too busy and I can't get our schedules to match.

GirlPowerDebbie

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