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Topic: CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.

Forum: Growing Our Friendships After Treatment —

For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.

Posted on: Jul 18, 2015 08:14PM - edited Feb 21, 2016 12:31AM by SlowDeepBreaths

SlowDeepBreaths wrote:

I'm hoping there isn't another thread like this. I did a search and saw one for stage 4, but nothing for everyone else. My very special friend on BCO (Tomboy), and I have talked about a Crazy Town thread for awhile now. I know she will be happy I finally took the bull by the horns!!

I wrote a little story about visiting Crazy Town last year on my blog, and I received some lovely emails from women all over the world talking about how terrifying those feelings can become. I thought I would share that story with my BCO sisters. I know many of you can relate to the craziness of worrying about recurrence or progression. I think my experience epitomizes the crazy place our minds can go. I've found when I can laugh at myself, I always feel better.

"My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don't have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn't wake up my DH. Being the OCD person I am, I always wash my hands after using the restroom – even in the middle of the night.

One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I'm sure many of you will know what I'm talking about - that feeling of dread.I ran my fingers over it and it felt raised. I couldn't imagine what it could be – it was SO big. I thought, "Oh great, here we go again, now I've got skin cancer." Then I decided to risk waking DH up by turning on the millions of lights above the sink. Then I got a closer look. UNBELIEVABLE!!……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn't give you a good laugh, I don't know what will. CRAZY TOWN!!!"

I have many stories since diagnosis. I call it going to Crazy Town. Some of them are funny, others not so much. I usually go there in the middle of the night when everyone is sleeping, and my mind wanders. There are no trains, planes or busses out of Crazy Town in the middle of the night. I also go there at times when I'm waiting on test results. I hope we can all share our Crazy Town stories. Talking about it has helped me to stay on the outskirts of the town. I've been really good about not visiting lately, but this week it's been a real challenge.

If you have tests coming up, or you just have a day where you're worried more than usual, or if you just want to hang out and chat, please stop in to visit. It is my hope we can have some fun here and get each other through on difficult days with humor, kindness and hugs!!

Much love to all,

Beppy ツ

P.S. If you've just been diagnosed, I strongly suggest starting a blog. Whether it be just for yourself, or you'd like to share it with others. It's been a good outlet to get my feelings out as well as a wonderful timeline to refer back to when needed.



Great info about breast cancer and PTSD:

http://www.healthline.com/health-news/cancer-treatment-leaves-survivors-with-ptsd-scars-031215#3


Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
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Jun 4, 2019 03:53AM Lucy55 wrote:

Iris ..in your pocket while you wait for the results of the scan ..crossing my fingers with you for great results ...

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 4, 2019 09:21AM - edited Jun 10, 2019 11:26PM by jo6359

This Post was deleted by jo6359.
Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 4, 2019 11:27PM octogirl wrote:

In your pocket Iris! Fingers crossed!

Octogirl

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/14/2016 Arimidex (anastrozole) Hormonal Therapy 4/7/2016 Femara (letrozole)
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Jun 5, 2019 02:28AM ChiSandy wrote:

In your pocket, Iris!

Charles, sorry to hear you "took another licking" but glad you still "keep on ticking!" Your state is utterly gorgeous.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 6, 2019 02:19PM proudtospin wrote:

well verzenio did not acheive results my onc had hoped for

So switching back to an infusion chemo and will start that on sat

Anybody have info on gezmar? Seems to be used for severall types of cancer

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 6, 2019 02:28PM octogirl wrote:

that sucks, Iris, sorry to hear. No experience with gezmar, but keep us posted. In your pocket for chemo and thinking of you!

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/14/2016 Arimidex (anastrozole) Hormonal Therapy 4/7/2016 Femara (letrozole)
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Jun 6, 2019 05:31PM Di2012 wrote:

Iris...so....so....sorry.....sending you big hugs.....

Di

Mentor 600cc HP gels moved towards armpits & exchanged 3/26/15 to Allergan410MF-580cc. Surgery 12/21/2012 Mastectomy: Left, Right Surgery 1/21/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/15/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/15/2013 Reconstruction (left); Reconstruction (right) Surgery 12/31/2013 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction Surgery 3/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/14/2015 Reconstruction (left) Dx 1cm
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Jun 6, 2019 08:41PM - edited Jun 10, 2019 11:26PM by jo6359

This Post was deleted by jo6359.
Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 7, 2019 05:58AM Lucy55 wrote:

Iris ..so sorry ..hope gexmar is gentle for you , and kicks this wretched cancer to the curb ...hugs xx

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 8, 2019 09:17AM proudtospin wrote:

yeah, got a nasty uti as well, my pee is actually red and it is not from something i ate!

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 8, 2019 04:01PM proudtospin wrote:

well my new chemo went smoothly, only 30 min. Nurse said only side effect to expect is tired feeling, well home and relaxing for now

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 8, 2019 04:56PM Lucy55 wrote:

Iris ...glad to hear the new chemo went well...Sorry about the nasty UTI ...hope you're better soon .

Off to our daughters place for lunch today ..going to take one of our other grand-daughters with us..hopefully the kids have a great day playing !

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 9, 2019 08:57AM proudtospin wrote:

lucy, thanks as always for your caring thoughts, thanks to everyone on here as well

Well, got my excuse to open door and drink ice tea on my deck, weather report is lovely today, no rain till later in the week

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 10, 2019 06:58PM jo6359 wrote:

Iris- how was your UTI? How do you feel with the new chemo? Hope you're doing better

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 11, 2019 05:32AM Lucy55 wrote:

Iris ..enjoy the nice weather ! Hope you are feeling better !

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 11, 2019 09:42AM proudtospin wrote:

jo, i finally feel like the uti is cleared, my urine is clear finally! And the new chemo, i asked the nurse what side effects to expect from this new chemo and she said just exhaustion and she was right!..

Was supposed to do some pt at the hospital today but canceled, too tired

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 11, 2019 10:40PM octogirl wrote:

hope you get some rest and feel less tired tomorrow, Iris!


Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/14/2016 Arimidex (anastrozole) Hormonal Therapy 4/7/2016 Femara (letrozole)
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Jun 12, 2019 06:35PM jo6359 wrote:

iris- is there any way the PT's can come to your home and provide the lymphedema treatment?

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 14, 2019 02:16AM ChiSandy wrote:

Iris, bummer about Verzenio not working. Not familiar with Gemzar, but hope it does the trick. And I second the idea of visiting PT.

My brief foray into CrazyTown (more like MildlyNeuroticTown):

Tues. night (6/4) discontinued my Dexilant after reading articles about studies indicating PPIs can statistically raise the risk of heart & kidney disease & stomach cancer (odd, since it's supposed to help prevent esophageal cancer). Besides, no GERD after Invisalign forced me to stop eating after my post-dinner brush & floss routine, so I could lie down & sleep on a relatively empty tummy, Fine Wed. & Thurs. By Fri. morning even water made my esophagus act like Mt. Vesuvius. (Mr. GERD had returned with a vengeance). Bob (for you newbies, my DH is a cardiologist), said to resume Dexilant if GERD was making my life miserable, and to prevent esophageal cancer (lost an aunt to it). PCP said no, try Pepcid & TUMS. Even on that could only tolerate bland high-glycemic simple carbs. Dunno how I managed to get through teaching dulcimer at a folk festival 90 miles away Sun,, but I did.

Mon. had the bariatric clinic consult my MO had ordered back in March. Down 15 lbs, thanks to Invisalign and GERD-induced semi-fasting. Was put on a low-carb diet full of reflux-trigger foods. NP agreed with Bob I should resume Dexilant--otherwise, I would either stop losing weight or be malnourished. So on the diet I went, and am back on Dexilant. After tonight, I am to try alternating days and see if my gut is ok.

Yesterday, got the last 3 of 7 aligner trays and my ortho is delighted with my progress. Might even get my retainer in Aug. But tonight, during dinner, I broke off a cusp of a lower R rear molar. Doesn't hurt, but to my tongue it feels like the top of Mt. St. Helens after the eruption settled. Dentist will see me tomorrow; endodontist doubts I'll need a root canal, just a crown or even a huge-@$$ filling.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 14, 2019 11:09AM proudtospin wrote:

morning all, home pt doesnt sound possible, rather gonna use my gym. My complaint is just that i was not thrilled with tbe trainers assigned to me thix time. May try a talk with my onc .ater today.

Been bonding with a pest control guy lately. I had found a squirrel in my bedroom last feb. Guy came and couvht it and reloted it outdoors! Well i started to hear noises in tbe attic! Called the squirrel man, he quite quickly cought it using a live trap, but i still hear noises and this squirerrel doesnot seem to like the peanut butter as much,

So my adventure continues!

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 14, 2019 01:48PM - edited Jun 14, 2019 01:51PM by Lucy55

Iris .Good Grief !!! If it's not one thing , it's another !! It would be very annoying .!!! Cheeky little fellow not liking his peanut butter :-)

Hope your tooth can be fixed without the root canal.. I've had two done over the last couple of years ..no fun , and very expensive !

Octo ..how's the house ? Is you're garden fully established ? We're working in the garden here all day ..so much landscaping !!!

My grand - daughters 7th birthday party today ..She's so excited !!

Hugs to all




Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 14, 2019 05:38PM proudtospin wrote:

well went in for chemo but when they did blood workup my white blood cells are too lo so sent home, they gave me a nuperon shot and wil, try next week again, such fun

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 14, 2019 06:45PM M0mmyof2 wrote:

Latest CT Scan was as usual: normal

If you value your freedom, thank a servicemember both serving and retired!
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Jun 14, 2019 06:47PM - edited Jun 15, 2019 06:27PM by jo6359

mommyof2- congratulations again on a clean ct scan.

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jun 14, 2019 08:32PM Beaverntx wrote:

Iris, no wonder you've been so tired! hoping the Nuperon is the answer for you. Sending digital tender hugs.

Mommyof2, great to learn of good news!

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2019 06:08AM M0mmyof2 wrote:

ty all

If you value your freedom, thank a servicemember both serving and retired!
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Jun 15, 2019 12:17PM - edited Jun 15, 2019 12:18PM by octogirl

yay for good results Mommy! Iris, hope next week is a better one...

and Lucy, hahaha: you make me laugh! I predict that it will take at least three years, maybe five, to have a garden even a tenth as nice as yours...hubby says it is a 'process'. You know what that means...in his defense, the climate is a challenge here: we are still trying to figure out the watering thing given how dry it is, and it turns out that while succulents do fine in summer, most have to be brought inside in winter given how cold it gets....It's a work in process. Still, I love sitting on our back portal (porch) and admiring the mountains. Come visit! :-)

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/14/2016 Arimidex (anastrozole) Hormonal Therapy 4/7/2016 Femara (letrozole)
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Jun 19, 2019 07:21AM - edited Jun 20, 2019 02:25AM by Lucy55

Mommy ..great news !!

Iris ..Sorry about the blood test ..hope for better results next week .

Octo..ahh..I hadn't thought about you having to bring the plants inside in the winter ..it would be much more of a challenge trying to decide what to do ...We're going to turn up there one day !!!!!

Hugs to all xx

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Jun 20, 2019 06:21PM tangandchris wrote:

I'm on a fast approach to crazy town and I need help. I don't post much anymore, but today is one of those days.

I woke up this morning with some serious pain around my Coccyx. It feels bruised and achey, if I turn a certain way when sitting or shifting it is God awful. It came out of the blue. No trauma to the area. It hasn't gotten better and I'm considering a stop at the ER on my way home from work.

Of course my head goes to cancer. The mere fact this came on so suddenly has me freaked out. The pain is quite intense.

I'm venting, I know no one can give me answers. Just need to get It off my chest. What are the chances this is mets?😭😭😭😭

My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Chemotherapy 2/12/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 12/30/2015 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jun 20, 2019 09:12PM - edited Jun 20, 2019 09:13PM by jo6359

tangandchris- Take a deep breath. There are numerous reasons why you can begin experiencing severe unexpected pain in your coccyx. It can be related to a trauma from a fall, sitting on a hard surface or narrow service for a prolonged period of time, degenerative nature of the spine, etc. Have it checked out ASAP for your own peace of mind.. Whenever we experience pain most of the time our mind goes straight to cancer. Vent all you want. We will listen to you.

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)

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