Starting Chemo March 2015

SueH58

IndyGal - Yes, I live in Franklin, outside of Milwaukee. You probably had a malt at either Kopps or Leons--awesome custard stands.

You'll be in my prayers this week as you undergo surgery. I agree that fear is such a big factor. Once the surgery is over, you can move forward. Big hugs.

Sue

SueH58

IndyGal - how long will it take to get your PCR back? I hope it comes back quickly so you can eliminate that worry.

IndyGal35

Thanks, Sue!

We visited over Labor Day back in 2010, and we stayed at the Brumder. The city is so beautiful and clean, and there's so much to see. We really fell in love with Milwaukee! We also liked Holy Hill and Cedarburg. (Cedarburg Spice is still one of my favorite wines. I've even had it shipped here!)

The shake came from a perfect little greasy spoon - Miss Katie's Diner. We stumbled across it while looking for a place to eat on TripAdvisor. That shake still haunts my dreams. Ha! It was so good that DH and I had two.

I feel like I should make a tourism promo for the Chamber of Commerce or something....

IndyGal35

They said that final path will be back in about 7-10 days after surgery, but I will know results of the SNLB when I wake up from surgery, so that is good. (Any sign of cancer will lead to a full axillary, and those results would come back with final path.)

SueH58

IndyGal - Holy Hill is indeed beautiful, and I love Cedarburg as well. Miss Katie's is a bit well known. Maybe I should check them out for a shake!

Carrie37

Meme, I feel your pain. Nails, legs and all.

shaz101

beachbum, thats horrible that you've been diagnosed with shingles! Im so sorry to hear that. I hope it doesnt last long.

shaz101

thankyou Diane and Sue. I'm feelin better about it all now. I've made an appointment for net week with another phyio who is a registered lymphatic PT. Once i get some regular treatment and a plan I'll be much better. I guess itssimilar to getting BC, the hardest part is waiting! (Apart from chemo that is!). Im still getting migraines, but they are defintely better han they were.

My relationship isn going great either, I've withdrawn from the world quite a bit. The walls have gone up! Not sure what to do! 😩

Jackbirdie

here I am, 0-dark-30, Tutti bashing around in the kitchen. Caught her climbing on to the stove! She gets into everything. But how can you be mad at this face:

ninjamary

Bekah - I love when you post hair pictures. Mine is coming in a little bit. It's mostly gray and I see a bit of black. Someday my husband and I will have the same haircut (salt & pepper) I still look very bald though.

I must say BC survivors are awesome. We are doing a program called Ulster Project this summer. We have Northern Ireland teen living with us because I need to add more onto my plate. lol. Yesterday the entire group went to Mass and a striking woman sat down next to me during the dinner afterwards. After awhile she asked if I had breast cancer. Of course I grabbed my wig....and asked "can you tell?" (I was wearing my good wig, painted my eyebrows in very well and even had the false eyelashes on) Well she remembered me from another meeting in which I came in a fancy headwrap. Anywhohow she was was wonderful and 7 years out. It's so nice to talk with survivors rather than those healthy people.

I'm having a rough time with head sweat. I keep hoping it will be done when I'm finished Taxol, but I think that's wishful thinking. My sleep patterns suck. I don't even know how I function during the day anymore.

wpmoon

it's a bit of everything that has me down. I have a pain in my abdomen that I've been ignoring for quite a while, knowing I should at least see my PCP, but terrified it's going to be some other type of cancer. I'm starting to feel like it's inevitable that cancer will kill me, despite all the steps I've taken to try and prevent that. I'm sure with time that feeling will resolve, but for now it's hard to ignore.

That and everything in my regular life hasn't been a cake walk, either.

It's hard to manage normal life plus cancer.

IndyGal35

Every random pain worries me too, Whitney. After going through the hells of cancer treatment, I feel like there's a bullseye on my back. It's like it's got me on speed dial now. I know it's 100% normal, and every survivor I have talked to has said that the worry slowly fades. Still, I wish I could get a PET every month to ease my mind.

I'm trying so hard not to worry about tomorrow. I had nightmares last night, and my GI system has already gone into high alert. I'm going to work a half day and clean the house to stay busy. I will be requiring lots of Jack and Tutti pics, I think

Trvler

Whitney: I agree that normal life is hard. Cancer on top of that? I feel like it will kill me eventually, too, especially after I saw the rate of recurrence for ILC is 24% compared to 3% for IDC. You don't want to be a pessimist. Just realistic.

SpecialK

trvler - where is that statistic coming from?

slothabouttown

This weekend I felt like I was just waiting to get back to work be cause there I have less time to worry about every pain. I have an abdominal pain too. I've had it off and on for years. I told my MO and see said if its been there so long then shes not worried about it. I, on the other hand, worry about it all the time. Reading these posts helps me tell myself this must be a normal phase just like when we thought we werent getting enough chemo. Also I feel tired. I don't know if it's from the anxiety or the six months of surgery, chemo and radiation but I feel more run down than I did even in the middle of treatment. Even opening a jar of olives is a chore. I'm wondering if it's time to start some kind training. I walk 3 miles a day but this whole sandwich has left me feeling really out of shape. And I'm in line for tamoxifen which I read adds weight and low self esteem. Weeeee!

Lee, ill be thinking about you and sending good thoughts. You'll have all of us who've been through surgery to help you with recovery. I found surgery to be the most relieving, or instantly gratifying of all the "treatments" because I had actual physical proof that cancer was removed from me. That was a satisfaction I haven't really felt with chemo or rads, just hoped and prayed for.

Here's my best post surgery tip. Here in Portland fannypacks are back in favor with the hipsters.. they make the best drain holders- discreet and not dependent on a hoody for pockets-and it'll keep people guessing whether you're a progressively fashionable hipster or a nerd!

slothabouttown

Traveler, I have ILC too. I'll never forget when I got my path report and my surgeon referred to it as a "bad actor" I MADE myself stop reading about it, how it is "sneaky" in It's recurrence, higher rates, unusual presentations. I fIgure ill need to go back to educating myself someday but I don't feel ready yet, I read those stats and the room turns white and I break out in a sweat.

SueH58

Sloth - you are a hoot. I had my surgery in March, so I tucked my drains in the inside pockets of a fleecy jacket. But now that it's summer, can't do that. The drains were the biggest pain, but mine came out in a week (may be longer for a mastectomy). I love the idea of a fanny pack, though, and keeping everyone wondering. You could be a hipster doofus, just like Kramer!

That Tutti is just too cute for words.

Shaz - so sorry to hear about your relationship. Maybe you guys could get counseling? It's been a rough road, and maybe you just need to have open discussion, facilitated by a counselor.

Whitney, my heart breaks for you because you are so young. You should not be having to deal with this crap at this time of your life. I wish I could give you a hug (although a virtual hug is on its way - feel it????) You are going to come through this with flying colors. I often tell folks (being an advocate for mammograms) that it's hard to find out you have cancer, but it's better than not knowing. In both our cases, our cancers were caught early and I, for one, expect to live another 30 years just like my mom has following her recovery from IDC. She is now 84 years old, and vibrant as ever--golfing twice a week, working on weekends to stay busy, etc. My point in telling you this is if you are concerned about your tummy, see your PCP. More than likely, you will find out it's stress and nothing more and you can wipe that from your worry list. If it is something (unlikely so), you can treat it and move on, just like Andrea did.

I am feeling better after last week's chemo and heading to see my daughter in Madison for a couple of days (with a car full of food). I'm told folks should be bringing ME food, not vice-versa, but she needs the help more than me. She just bought a new home that they are working on like crazy and is getting ready for an October wedding.

(Lee, don't worry-I'll be checking in to make sure your surgery went well as expected).

Sue

Trvler

Have a great trip, Sue. Thanks for the story about your mom. I LOVE those stories!

Special: I think I saw it on the Rita Wilson thread. I saw it posted very recently. Please tell me I am wrong.

wpmoon

lee - holding your hand and thinking I you while you prep for surgery. I agree with sloth, I felt so good after surgery knowing that the cancer - the actual physical lump I could feel - was gone.

I finally took a leave of absence from work which starts today. I asked for 8 weeks, to make it through radiation and recovery. Things have been nonstop since December and I need to slow down.

Sue thank you for mentioning your mom. It definitely gives me hope and relief. I know quite a few people who are years out from diagnosis, healthy and happy. I look forward to the day when cancer isn't an every day thought.

Making an appointment with my PCP to get my ab pain checked out. And I can't wait for my PT appointment. I'm having shooting pains in my surgery breast.

SueH58

Whitney, I feel in my bones things are looking up for you!!!

Sue

ninjamary

I have a question. Every time I go for a MO visit I have to pay a co-pay. I think this is ridiculous. I remember when I was pregnant (ok it was 11 years ago) but once you paid that first co-pay you were done. AND in these visits nothing really happens. Temp, BP, listen to my heart and any concerns I may have. I'm out in 10 minutes. Am I the only one making a co-pay every visit? Granted it's only $20, but right now I'm out $200 and then add all the next visits I will be making over the years. I just checked my insurance and the total for my cancer as of June 9 was $150,000. That what was billed, not what was paid. I guess I should just be glad I have decent insurance.

rleepac

I met my 'Maximum Out of Pocket' expenses months ago so I don't have any more co-pays. You should check with your insurance company on that to see if you've met yours. They still ask every time and I just tell them "no, I've already met my maximum for the year" and they drop it. Sometimes if it's an over-zealous front desk person I have to be insistent and hold my ground but usually that's all I have to say

Jackbirdie

Mary- I agree nothing more annoying than copays that add up for visits that don't amount to much.

Every insurance type and policy is different. I get to choose how big my out of pocket amount is every year. This year, before my dx, I had planned to have a good health year, and increased my out of pocket, which is like a deductible, to $3,400 from $2,500 the previous year. So I paid copays, etc, until I hit that out of pocket amount. After that, everything is now free for the rest of the year.

So you can bet that anything that needs to get done, like the stupid cataracts, will be done before this calendar year is up!

Check your policy. Or you can call the customer service # on the back of your card. They are usually pretty nice aboutexplaining things you need to know about your policy. I wish I could "push 9 now and someone will explain to you why you got breast cancer".

ninjamary

Oh hell...I met my out-of-pocket max awhile ago. I need to review my policy. It's the little things like this that piss me off. Heck, they probably owe me money. Yeah, good luck getting that back.

ksusan

I've always gotten over-payments on co-pays back, FWIW. Good luck!

ninjamary

omg...ksusan...love the avatar....it made me laugh!

molly1976

Definitely stop paying your co-pay! I bet they do owe you money. I don't even have to pay for prescriptions any more when I pick them up at the pharmacy, which was a nice surprise.

Trvler

Call your insurance company. I have Aetna and found calling them to actually pretty easy.

BBwithBC45

Ninjamary, I have been up in arms with my insurance over the copays for the past few months. My deductible is $2,500, my out of pocket maximium is $5,000 which I met in February I think. Yet, each time I go to see my MO, PS, etc. I have to pay a $30 copay. First I thought that this was the doctors' offices who made an error. But my insurance processes all my claims this way! Right now I'm at around $1,000 extra for copays which I shouldn't pay. I called and I wrote them a few times. Finally I filed a complaint, cited some parts of the coverage documents, and told them that if I don't get a satisfactory explanation and solution from them, I will have to contact the state's Department of Insurance. My case is up for review today actually, we'll see how this ends. My blood just boils whenever I think of it.

Trvler

Ugh, BB. What a pain.I think doctors offices are clueless. My kids' doctors office hires people that have an IQ of a houseplant and they tried to charge me a copay once for a flu shot and the doctor corrected them. I am glad you contacted the dept of insurance. Let us know what happens.