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

Forum: Bonded by Breast Cancer —

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

Posted on: Jul 18, 2015 05:14PM - edited Feb 20, 2016 09:31PM 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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Jul 13, 2020 09:07PM ChiSandy wrote:

I wear progressives (one pair of Transitions, one with very dark sunglass lenses). They're 18 mos. old. I had computer progressives made 2-1/2 years ago (blue-blocking); but I'm finding that for offline reading (and working crosswords), 2-yr-old Warby Parker prescription readers work best. My retinologist suggested that because my distance vision was much sharper when looking through a pinhole (corresponding to squinting), I might want to look into getting some single-vision distance glasses for driving too. (Will look at Zenni or Warby online for frames with which I'm familiar).

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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Jul 14, 2020 01:30PM keywestfan wrote:

Sandy, So happy you are off the ledge and back in through the window. Except that the blob is there in the R eye, everything else, roundness, color, no fluid, seems copacetic. And Merkel tells it like it is- no false assurances. He’s facts, studies, statistics and what I feel is his kindness takes second to these. He’s, as much as it’s possible to be with this disease, a truth teller. So I would feel most reassured. Speaking of the Ledge, I see him 2 weeks from yesterday. Have not seen anyone, both Winchester appointments cancelled because of Covid, in six months, when I last saw Merkel. So,I will go back into my PTSD, and expect when he examines me that he will step back and exclaim,” OY GEVALT,” though it would be so surprising it would almost be funny if those words came out of his mouth. But there could be an equivalent- a before/ after where life changes again forever

Anastrozole June 2019 Dx 2/14/2019, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 3/23/2019 Lumpectomy: Right Radiation Therapy 4/29/2019 Hormonal Therapy
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Jul 14, 2020 04:00PM ChiSandy wrote:

Judy, I am trying to imagine Merkel speaking Yiddish--I think even Yao is more likely to do so! He said that Law will "definitely see" me in Oct. so at least she's not intubated in an ICU somewhere.

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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Jul 18, 2020 10:52PM eggroll wrote:

Hysterectomy went well on Wednesday. By Friday I wasn't needing Percocet anymore. Just Ibuprofen and barely even needed that today. My left ovary looked "perfect." Go figure! Glad it is gone...it was like the car you take to the mechanic that can never be fixed! Anyhow I feel silly I was worried and very annoyed there wasn't anything wrong there when it caused me pain off and on for 18 months. Just doesn't seem right. Talk about Crazytown! Also glad I don't have to worry about it making any estrogen since I was never able to tolerate the Tamoxifen or aromatase inhibitors. On to the next goofball thing!

Dx 9/8/2015, IDC, Left, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2- (IHC) Surgery 10/21/2015 Lymph node removal: Sentinel Radiation Therapy Surgery Lumpectomy: Left
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Jul 19, 2020 12:34AM ChiSandy wrote:

I, too, keep thinking of time as "before/after," on either side of a break in time: losing my parents (20 yrs. apart), breast cancer, Trump (which seems to get worse every day), the pandemic, racial injustice, two senior cats--one with special needs) and now this.

But I look at the way our Stage IV sisters are plowing ahead and living their lives even as they deal with the uncertainties and treatments. Life goes on...until it doesn't. As the old Bad Examples song puts it, I'm "Not Dead Yet."

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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Jul 19, 2020 04:01AM Lucy55 wrote:

eggroll ..so pleased to hear your hysterectomy went well !

Iris ..how are you ?

Hugs

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/13/2014
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Jul 19, 2020 03:26PM ChiSandy wrote:

Still in Crazy Town, but have relocated from the haunted mansion in Psycho Place to a studio condo in Neurosis Neighborhood. My bloodwork & CT scans came back negative for mets. Ocular onc. will order the radioactive seeds & plaque tomorrow--takes 10-14 days to order & make, so we're looking at 2 weeks from tomorrow for biopsy & brachytherapy.

Iris, how are you doing?

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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Jul 23, 2020 06:37PM octogirl wrote:

yeah for the negative scans, Sandy! It's a start, in any case.

Hoping to hear from you too, Iris..

Virtual hugs to all

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 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)
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Jul 29, 2020 01:37PM Lucy55 wrote:

Iris..missing you !

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/13/2014
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Jul 30, 2020 09:17PM eggroll wrote:

Just got back from two week follow up post-hysterectomy. Turns out I had ELEVEN cysts on my one remaining ovary (lost the first one when I was 18 to a cluster of cysts that destroyed it). And my uterus was the size of a melon. Hmm...I have been suffering along for the past 14 months, thinking "hey menopause is here, this pelvic pain should be gone soon." ...anyhow, I am very happy because it was all benign and also because I thought I was really losing my mind moving ahead with the surgery during Covid even though the ultrasound was "normal." Turns out I had good reasons for being in pain.

ChiSandy, glad test came back negative for mets. I guess the biopsy is to check for a whole new cancer then? Thanks for keeping us posted.

Dx 9/8/2015, IDC, Left, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2- (IHC) Surgery 10/21/2015 Lymph node removal: Sentinel Radiation Therapy Surgery Lumpectomy: Left
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Jul 31, 2020 01:10PM ChiSandy wrote:

eggroll, here's hoping your upcoming surgery is uneventful.

The biopsy is of the tumor itself--for genomic analysis, to check for gene mutations that either make future mets likelier, make me a candidate for a trial of combo MEK & FAK inhibitor therapy should mets occur, or both. The trial is conducted at Wills Eye Hospital in Phila., but presumably if I were in it UIC could obtain and administer the drugs. New estimated plaque "placement" date is 8/13, with removal 8/17. The radiation oncologists are fashioning the plaque to fit the tumor's dimensions, and their physicists will be affixing the radioactive seeds in precisely the right pattern.

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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Aug 1, 2020 08:30PM eggroll wrote:

ChiSandy, wow, that is some kind of rare thing going on with you. Never heard of it. We were diagnosed one day apart in 2015 and have been kind of keeping track of you since then off and on. Will continue to do so. My hysterectomy was two weeks ago, I feel like a new woman.

Dx 9/8/2015, IDC, Left, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2- (IHC) Surgery 10/21/2015 Lymph node removal: Sentinel Radiation Therapy Surgery Lumpectomy: Left
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Aug 2, 2020 03:52PM CeliaC wrote:

Sandy - Continuing to be in your pocket as you go through your ocular issues/treatment. It all sounds pretty scary to me. You are a strong woman!

eggroll - Glad to hear you are doing well.

Continuing dental issues lately. Infected tooth treatment kicked off with a root canal on 7/15. Dentist injected some type of antibiotic into roots, temporary cap placed & will re-evaluate in 3 months before hopefully, all being well & permanent cap. At routine cleaning/exam on 7/29, mentioned some issues with pain near that tooth. Turns out that sometime in the 2 weeks between visits adjacent tooth totally cracked & extraction to be done on 8/3. Also, have Dr earlier that day in order to obtain statin scrip refill. MO visit was on 7/24. Tired of my only "outings" other than groceries being for these types of things. Although, I must say lots of others on this topic are undergoing more dire treatments than this & healing thoughts coming to you.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Aug 3, 2020 02:29PM ChiSandy wrote:

Celia, in your pocket for the tooth extraction. Will you be getting an implant or just a one-tooth fixed bridge? (I've had the latter since 2003).

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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Aug 3, 2020 04:21PM CeliaC wrote:

Sandy - Thanks for being in my pocket. Tooth extraction, per dentist, was easier than expected & it came out cleanly (no bone issues). Just beginning to have feeling back. Taking acetaminophen for now & icing. In 2 months, I go back to see if root canal work with antibiotic (done on 7/15) on adjacent tooth is coming along ok & tooth will only need new cap vs extraction. If not ok, may end up with either a 2-tooth bridge or 2 implants. So, will wait and see what transpires & evaluate the cost in 2 months. Painful from a $ perspective either way, since I no longer have the excellent dental care plan I had prior to retiring. Glad I socked away $ in an HSA.


Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Aug 13, 2020 12:33PM M0mmyof2 wrote:

Been stuck in Crazy Town lately. Hubby’s work schedule was really throwing me for a loop with this virus crud. It’s gotten better though.

If you value your freedom, thank a servicemember both serving and retired!
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Sep 15, 2020 11:47AM M0mmyof2 wrote:

Got good news last month when I had my check-in with my oncologist by phone. Scans and follow up appointments now every 6 months.

If you value your freedom, thank a servicemember both serving and retired!
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Sep 15, 2020 09:35PM ChiSandy wrote:

Seeing my derm tomorrow a.m. for my annual (6 mos. overdue, because of pandemic office closure) full-skin exam, which can only be done in person. I'd blow it off, except now that I've been diagnosed with ocular melanoma I may be at higher risk for the commoner cutaneous version. Not looking forward to it. (I used to, because I'd score lots of skincare samples. No longer).

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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Sep 16, 2020 01:50AM Lucy55 wrote:

So sad to read on another thread that Iris has lost her battle with this awful , awful disease .R.I.P beautiful lady ..Fly high with the Angels Xx

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/13/2014
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Sep 16, 2020 03:05AM M0mmyof2 wrote:

Appointment with my cardiologist today. Routine 1 yr. check-in

If you value your freedom, thank a servicemember both serving and retired!
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Sep 16, 2020 01:07PM ChiSandy wrote:

Oh, no--not our Iris! (Didn't she start out with only DCIS)? May she be teaching a spin class in Heaven.


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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Sep 16, 2020 01:33PM Lucy55 wrote:

I know , it's horrible Sandy ...Iris was such a lovely , gentle lady ....just did what she had to do , and never even complained ...




Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/13/2014
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Sep 16, 2020 02:58PM M0mmyof2 wrote:

Iris will be missed by all of us

If you value your freedom, thank a servicemember both serving and retired!
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Sep 18, 2020 03:38PM octogirl wrote:

I am so, sad to hear the news about Iris! Yes, I imagine her spinning in heaven. I will miss her.

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 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)

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