2012 sisters

Love it!

teeball - welcome back.  ;-)

hello to the  newest sisters- welcome, and sorry you had join this group.... it's a bumpy ride but we manage to laugh along the way.

2Fried- I'm here... just licking my wounds, moisturizing my coconut...  no seriously... this chemo thing sucks!  If I hadn't met my husband and gotten married 2 1/2 years ago I would have taken my chances with my Oncotype of 22 and passed on this part of the "experience".....  but for him - I want a LONG life - shit we didn't find each other until 40/41.  First marriage each.

So I already had an idea but now i am sure... I HATE WATER.  i've always been a coffee girl and maybe a club soda at night with lemon kind of chick and i'm pretty sure i haven't been drinking enough of the stuff.  so since last friday i can barely remember what i've done.  my brain is foggy i haven't been able to sleep at all and i've had a constant headache which is only worsened by the weight of my head against a pillow; and that's the good news.  (PS I am saturating myself again)

i have a intestinal condition called crohns disease and the the last couple of days it seems no matter what i eat my stomach is just cramping up.  my port is really REALLY sore and irritated at the incision spot on my left side and the TE on the right side is really hurting too! why did i think once it was expanded the pain/discomfort would stop?!  That area under my arm is so fucking tender; well actually everywhere around it!!!  Does that let up at all or do I have this to live with right up to the exchange in november? my nerves are all waking up and as a result i can feel all around the TE - so as we say in the rooms (12 step program for me that is) - the good news is you get your feelings back; the bad news is you get your feelings back!

so i try to  gain me some perspective right...?!  i'm already 1/4 way through my treatment; truth is i'm fedup already with the constant peeing, hand washing/sanitizing, tooth brushing and baking soda rinsing after every single item i eat, the moisturizing, and all the time waiting for my hair to fall out, my skin to dry up.... shit; i'm just an emotional hot mess.  oh and what about my cats...!?  What do you do when your cats want to be near you, but they could carrrysome bacteria on their feet that will make you sick?!

so yes 2Fried you're so spot on, this bitch called cancer takes her toll and i've only been at this a few months.  I had 2 other women in my life recently who had the multiple surgeries leading up to a MX so that's why I just went for it right out of the gate.  Looking back the "simple lumpectomy" with rads would have been followed by chemo and (as i already knew) not so simply reconstruction after rads.

i don't know about any of you but i decided in my 30's that my rule of thumb for riding a ride was that if it goes in 2 directions simultaneously i'm out...and this ride has certainly exceeded that. I too am just exhausted...  we get over one hurdle and then then feel elated that we cleared it, right... only to be brought crashing down by either the reality of what we are going through or being told "SURPRISE! THERE'S ANOTHER HURDLE!"  ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ok that's my rant.  i feel a little better now, thanks ladies.  i've been in my shit for 3 days.  really wished i had someone to CALL and didn't feel well enough to try to type out this message; but i was keeping up and reading everyones elses posts.  I can't try to address you each, but just know that your posts reminded me that I was SO NOT ALONE in this, and i can only hope that this post does the same for someone else.

xoxo sistahs!

Glad you're here, Juneau, and the pictures made me laugh - thanks!

I have two cats myself, and all through chemo they slept with me, sat on my lap etc.etc. Only thing I did not do was clean the sandbox. As far as I know, that's where the danger of infection is with cats.They are pretty clean animals. Just washed my hands after I cuddled with them, but I've always done that anyway.

Those TE's should get better. Also I think what happens is that you just get used to them after a while. Oher than the fact that it is rock hard, mine doesn't bother me anymore.

A good friend of mine was diagnosed with breast cancer today. I feel so sorry for her, because she's in such a state of shock, and I know what she is in for. She's coming over in a while to get some info from me, the 'veteran'. Poor woman. I'm crying already.

juneaubugg-Sending you big ((((((hugs)))))))))))))), I love both of your pics. Hang in there, that chemo killing all your remaining cancer cells. 

Mcook it's looks like my dx is very similar to yours. I just don't know my numbers yet....stage, grade etc.

I see the surgeon again next week to discuss mastectomy, and the date. I'm hoping to hold off til first week of October when I'll have better insurance coverage.

Aside from sending you all a happy good morning and hugs - I had to share a story that only my sisters with numbness would understand. I'm going today to get checked for cording, so I figured I'd try to address the forest that has cropped up under my left armpit (which I still can't raise and spread out enough to shave like my right side). As per my surgeon's suggestion - I used an electric razor to avoid nicks and cuts. Well - as I'm standing in front of the mirror after my shower to make my usual half-assed effort of applying some deoderant to that arm - I see red smudges in various locations. Seems I forgot about a small skin tag that is a bit below the forest under there. Guess I attacked it with the razor. Didn't feel a thing though. How odd that you can slice off a bit of skin and not feel the slightest owie... I even had trouble applying antibiotic cream to it, as I couldn't feel it - and in the mirror, you have to move the opposite way with your hand... Oy... Well - I got some cream and a bandaid on it - and fortunately I'm seeing the nurse today, so I'll ask her to check it out and put my lypmhedema/infection fears to rest. Ah - the fun times.

Hello



I waited about a month from Dianostics. I understand fear about insurance but maybe look into if state programs can cover you. Use the patient navigators from American cancer society to assist you with this. They have great patient navigators to assist. I actually discovered my lump in September but thought it was nothing so went in feb and by then it had grown to a very large tumor. What my doc told me is because I was so estrogen positive each monthly cycle I had my tumor grew quickly. So ask them and see if it changes anything but I know a lot of women that had to wait weeks just for their appointments to get schedules a dates. Maybe have a benefit to help cover those initial cost? I didn't but after paying just over 2000 in parking and gas I maybe should have:) The stress of insurance coverage sucks and maybe there is something out there to help that you don't know about? Hang in there it is a lot to take in. Maybe these other ladies have some additional help on this?



Hugs!

Soteria - I think everyone's timing and path is different. I was diagnosed june 7 and had surgery july 10. But my Dad had connections at Sloane, so that might have helped move me along faster... You should speak to your doctor and ask how aggressive the tumor is. That should be taken into account. And I think mcook is onto something about researching other avenues. Good luck.

As for me - frustrated at the level of anxiety I feel about a simple meeting with the oncologist today. Its not like they start shooting me up with the poison today, and it's not like I'm going to hear anything unexpected. I already know I'm getting chemo, rads and other targeted treatments, so what is the big deal?! I don't think I realized what a control freak I am until cancer knocked on my door. I truly hate not having control over my life right now. Sigh... this too shall pass.

Off to go stop my Dad from teaching my boys how to throw paper airplanes out of second story windows...

Soteria205  How was your cancer diagnosed mammo, Mri, core biopsy, excisional? They do weigh factors like tumor type , size and aggressiveness, pre/post menopausal, etc when  deciding how long they will wait for MX and several (like McCook said) have the chemo before the MX. Mine was all pretty spaced out but I wasn't HER+ so I can't speak to that. I would definitely run the insurance issue by the doctor though to see how much difference waiting or just having an excisional first would make. It is a pain to have to worry about insurance and maybe you won't have to but at the same time if they think it needs done right away, atleast you do have some. You will definitely feel better after meeting with the doctor though and getting " the treatment plan". There will be other unpleasant waits like for pathology results which will determine if you need rads etc but just getting started on a plan seems to help because you feel like you are doing something to get rid of it.

McCook I feel for you  agonizing over the loss of your breast but I'm telling you I bet afterwards you'll find that what you have already gone through with the chemo, etc was the worst of it. I was so stressed beforehand but after surgery, I felt like I had a huge weight off my chest after the NSDMX. (Oh wait! I did have 2 weights taken off my chest-lol - but now got much heavier ones in the form of TE's) Although I had a little pain right after and aggravation over the drains and some tissue healing issues, it wasn't near as bad as the anticipation beforehand. We are all different but you have been thru so much already -I'm hoping you will be relieved too when surgery is over with.

Ramols I know exactly what you mean about shaving under the arm. I was telling my DH that I had such a hard time because of the TE's. He's like just kind of pull the skin to the side-I  cracked up. I said it sounds easy but the skin doesn't budge and these expanders  are humped right near the bottom of my pit. There is a little tuft of hair that no matter what I try I can't get. I tried the electric raizor too but had no luck with it at all. It was too bulky and I ended up getting raizor burn holding it in one spot too close and long trying to maniputate it in the area. I haven't tried it since. I have had the most luck with the venus raizor but still  haven't been 100 % successful. My final attempt may be to try one of those pointy little nosehair things and if that doesnt work I may have to just braid it if it gets too long before my exchange! lol It is crazy though like you said that you can't feel certain things at all. I had some necrosis  and my PS would just come at my foob and cut the skin with scissors  then sew me up with a needle and thread and I didn't feel a thing but maybe a little tugging.

Juneubugg, so glad you feel better. From here on you should be okay until the next chemo, but then you will know what to expect. For me the first cycle was the worst, and time dragged on as if it would never be over. It got much better with each cycle. It still sucks and aways will. I've never heard of anybody who enjoyed chemo.

Tazzy, did the drains come out? It sure feels good when it's out. While you have them, it feels like a doggie on a leash that's with you all the time, and it wants attention all the time too.

Mcook, losing a breast is very traumatic. It's something that's been with you all your life, and it's part and parcel of your femininity and sexuality. My DH and I cried together a few times, and said goodbye to it. I was so relieved that the cancer was gone with it, though. Now seven months later I don't think about it anymore. It had to come off, I have a reconstruction going, and I'm good with that. Hopefully it will work out for you too. 

Ramols, your shaving adventure made me smile. One 'perk' of chemo was that I lost all hair there and that there is still nothing, although the hair has come back everywhere else. Good luck with your efforts!

Soteria, once you're through this first phase, and know where you're headed, it will get better. Hope you can work out the insurance thing. That will give you some peace of mind.

Yesterday my dog and I had a picnic with sandwiches, Okanagan peaches and cold milk. We swam, played fetch, napped in the shade, read a little, floated in the lake and just relished feeling so good and so 'alive' again. So grateful for that! All of you in treatment, you will get there too. To some it may seem a little impossible right now, but it will happen.

A good weekend to you all with minimal SE's! We're off to visit friends on one of the Gulf islands, and to enjoy life some more.

Ladies you bless me to no end! I'm so grateful to you all for answering some of my questions.



2friedeggs you made me laugh out loud, thinking of anyone braiding their armpit hairs.



I had a routine mammo on July 12, 2012. I had no symptoms. I got a call a few days later to go for a more intense mammo, followed by ultrasound. While I was still on the us table, the radiologist came in to tell me he was 75% sure there was a cancer. One week later I met the surgeon, and had an ultrasound guided biopsy of left Breast & lymph nodes. I got the call 2 days later, that here was a cancer. The surgeon called a couple days later to say there are cells in nodes. No idea yet how many are involved.

The following week I met the mo, whom I love btw. Two days later I saw the plastic surgeon, and RO.



I've already had my pre-surgery testing. I see the surgeon this coming Wednsday, august 22, to discuss scheduling.



I was told there are several very small cancers in the left breast. I guess they add them all together to determine size.



I'm supposed to start Adria cytoxan 4-6 weeks after mastectomy. Radiation is still undetermined at this time.



I will be 62 in November, so I was done with menopause by age 50.



All my treatment is at the Stephanie Spielman Comprehensive Breast Center. It's a part of the James Cancer Center at Ohio State University. An awesome team.



I will ask Dr. Povoski if it would be too dangerous to wait an extra month. I'll take his opinion to heart.



I will be praying for each one of you.



GOD BLESS

Here's hoping you heal quickly and enjoy the weekend.

my 2 cents are slightly different - My sister and I were both diagnosed the same week in April. As it turns out, she was able to have a lumpectomy, me a mastectomy. The BS told  me they were guided by a certain time frame. I was diagnosed 4/22, had surgery 6/7. I don't know the exact situation Soteria is in but I do know we live in the United States where health care is ridiculously expensive. Damn, I HAVE insurance and the bills (co pays, deductibles, mistakes, etc.) are coming in daily. If the doctor says it cannot wait an extra month, of course, I would have the surgery and not even worry about the bills (which could NEVER be paid without insurance coverage unless you're Mitt Romney or Donald Trump). If the doctor says it can wait, I would. Sometimes, for this reason (health care), I wish I lived in Canada or, for that matter, any civilized country in the world. I just saw a map of countries that have universal health care and those that don't.... Well, we're on par with China and most of Africa - every industrialized country in the world provides it but us but don't get me started - this is a breast cancer site, not a political site lol. Let your doctor be your guide, Soteria

liefie - I loved your day with your dog. There is nothing like man's best friend to make a good day better or a bad day good and to make you forget you problems, even if it's for just a little while.

Tazzy - I had my drains in for six full weeks. Once they come out it will be the greatest relief. It was the best part of this whole thing. Hope you enjoy the birthday party and the brunch. You sound good and that's wonderful.

June - I believe it IS time for a happy dance. While things are not perfect, you sound soooo very much better than you did just a few days ago and every little thing counts. It gets better (I have to keep telling myself that too or you can't believe the negative place I can end up)....

McCook - losing my breast was one of the hardest things I ever had to do mentally (and it wasn't too much fun physically either). It was on par with having my hysterectomy 13 years ago. I felt like they were taking everything that defined me as a woman.  Over 2 months out and I realize we aren't defined by a boob or a uterus and the cancer left with the boob so it's really a good thing.  You will definitely adjust to a reconstructed boob but in the meanwhile, it sure is sad and your feelings are exactly what's to be expected.... Good luck to you this week

I had an appt. with the BS today. My surgical scar is still open. In fact, it looked like it was gaping. She measured it to compare next time. The PS has tried having me pack it every day (blehhhh). The BS says we might have to look into that wound vac thing (which I don't understand even though I googled it.). I don't wanna sound negative but my surgery was 6/7, it was a big success except that 8 days later, I ended up back in ER with massive bleeding, needing emergency surgery (6/15)... On 6/18 I was still in hospital and had another massive bleed and had another emergency surgery and then after going home the scar opened up and seems to be staying that way. I had TE's but they had to come out. I can't even think about recon. for another 6 months so more. I more than 2 months into this damned thing. I try to read your stories and stay upbeat. Hell, no more cancer, no chemo, no rads.... Still, this is the disease that keeps on giving....FUCK CANCER.... (Was going to say fuck breast cancer but just got the saddest news. My son was career Navy and a shipmate/good friend of his was recently diagnosed iwth testicular cancer. The kid is only in his early 30's. Well, that is one of the most curable cancers, right? Well, they do the surgery and find that it has spread to his abdomen. He starts chemo next week so I say this: Life is NOT fair at all and I also say, FUCK CANCER.... 

 On that note: Healing and peaceful vibes all around .

All the warm words eases my fears....thanks to my sisters in this!

I opted for a lumpectomy for my 3cm insitu IDC  with radiation and A/C/T chemo, (because it was triple neg). 2 years later my sister's mamogram revealed lumps in both breasts with 3/10 nodes. She opted for the double mastectomy. Our BRCA tests were both negative with no family history. After her diagnosis I asked my Oncologist, who I called my "Oncle Dave" if he thought I should have done the more radical surgery, now knowing that it's in my family and he said "No, but if it comes back, god forbid, we can always opt for that later". So fear not, trust your doctor's and go to all of your follow-up appointments and mamograms. Cancer that has been spotted is cancer that can be cured.