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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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Jan 29, 2019 09:35PM ChiSandy wrote:

Cubbie, don't fear the DEXAScan. I was osteopenic even before starting treatment. Two years later--due to Prolia shots and daily calcium/D3/magnesium/K2--my scan showed improvement on all measurements--with one (an arm, I think) now deemed "normal."

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 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 2, 2019 10:27AM octogirl wrote:

Hi all: I've been traveling and just got back and catching up: Mommy, so glad the scans were clear! Yay! Cubbie: I'm with Sandy: the dexascan isn't something to worry about: it is an easy test and they can figure out how to address the results if need be...Lucy: wish I could come to Oz this year! Glad you are enjoying the new place. Say hi to the wallabies for me.

As for me, we close on our new home a week from Monday! Very excited! We probably won't move in until March: there are a few things we want to do construction wise before getting our furniture in there...we are going to replace a few windows, and there is a perfect place for a hot tub right behind our master bedroom: but you have to walk around from the side portal off of the dining room (we call porches 'portals' here in New Mexico) to get to it...Solution: have the window guy, who is also a door guy, replace one of the windows in our master with french doors...then we can get our hot tub!

The house is small, smaller than our rental here, but I think I have a plan for fitting most if not all of our furniture. The house is on 1.5 acres of land, however, so it will be the biggest piece of property I've ever owned! Can't wait to get settled there....

Hope all have a great weekend!

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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Feb 2, 2019 03:29PM jo6359 wrote:

octo- it will be so much fun for you to start decorating the house and getting everything ready.

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 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 4, 2019 02:26PM Molly50 wrote:

Hey crazies. Cubbie, I hope your dexascan results were good. Mine were just a teensy bit worse so I am good for another year of avoiding bisphosphonates.

Octo, congratulations on the new house. Lucy, I hope you are settling in to your new home. I have to just say I LOVE my new MO. I have no idea why I tolerated such a crappy one for so long.

54 years old. Chek2 mutation. Family history of BC. Oncotype Dx 13 Extensive LVI Dx 6/8/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- (FISH) Dx 7/29/2015, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 7/29/2015 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Surgery 9/4/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 10/13/2015 Arimidex (anastrozole) Radiation Therapy 10/20/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2016 Aromasin (exemestane) Surgery 7/22/2016 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 6, 2019 02:10PM Lucy55 wrote:

Molly ..so good to see you ! Glad to hear you've found a good MO..it's awful going to someone you're not happy with .

Octo ..your new home sounds wonderful.. A wine before bed in the hot tub sounds great ;-)

Iris ..How are things going with you ?

Well ..have had a steady stream of visitors to see our new home ..Two friends coming for morning tea today ...have to clean up and organize the food ..

Jo ..Hi !!

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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Feb 6, 2019 05:47PM proudtospin wrote:

hi lucy, thanks for asking

Spent day in nyc, shunt still needed adjusting, hoping this is it. Feel fine now but i was pretty bad walking today and really needed my friend to help me. Hoping this is right although i will still need to go in to check it out after a week or two

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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Feb 6, 2019 06:29PM M0mmyof2 wrote:

Hubby and I had a very tiring day yesterday. We had to go to a funeral for his uncle who passed away on Saturday.


If you value your freedom, thank a servicemember both serving and retired!
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Feb 6, 2019 07:34PM jo6359 wrote:

mommyof2- sorry for your loss.

Lucy- how's the unpacking coming along?

Iris- I hope your issues with your shunt have been resolved.

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 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 7, 2019 02:21AM - edited Feb 7, 2019 09:45PM by ChiSandy

Back home tonight from Las Vegas--where we stayed an extra day because our flight last night was cancelled due to an ice storm. (It was hairy here last night, but all melted by morning). Flight was only 1/3 full, because most of those travelers whose flights were cancelled had to stay at the airport overnight and wanted to get home ASAP today. We just held over in our timeshare suite (using HiltonHonors points for the extra night), had a lovely steak dinner last night and took the monorail up & down the Strip today before first having lunch & then heading to the airport. Gordy had a row to himself, and Bob & I used the middle seat for reading matter & pillows.

Unfortunately, even though we flew on senior fares and were TSAPre-Check from Chi-Vegas, not so on the return. Truly a PITA having to get out of my shoes, take out my iPad and put everything--including my rollaboards--in separate trays. I set off the scanner...not with my orthopedic hardware (R tibia, L ulna & hand) or knee replacements, but my underwire bra! One of my rollaboards was pulled aside to be re-scanned, as the TSA agent said it "didn't show an image" first time through (can suitcases be "vampires?"). But I was pretty systematic about putting everything back together, so for me it was no big deal. For some insane reason, the scanner lit up at Bob's shoulders--where there's no metal whatsoever! He was really pissed off at having to be patted down (I always get the pat-down so I'm used to it). His carryon was pulled aside for random inspection, and I'd never seen him so furious as when he had to rummage through it afterward to retrieve his wallet, belt, keys, watch and paperback. (He doesn't fly as often as I do, and when he does he is definitely used to being TSAPre).

Sorry for the loss of your uncle-in-law, M0mmy. Seems at our ages, we go to far more funerals than weddings (including friends' kids' weddings).

I wanted to make sure I could get to sleep last night in order to check out in time this morning, so instead of microdosing a little indica (sativa actually makes me more aware of my pain) with my CBD I took a CBN capsule instead. (They're not cheap, so I usually use them as a last resort). Unfortunately, I took it first and then had my CBD. Bad idea. Fell asleep for a couple of hours, but awoke from a dream needing to pee...but I was so stoned I could barely turn over. (I guess that's what kids today mean when they refer to "couch lock"). It took sheer force of will to turn over, sit up and walk to the bathroom...and then I couldn't get back to sleep for more than a few moments at a time, awakened every time Bob kicked the mattress (he has restless legs syndrome but refuses to do anything about it). It was only then that I remembered what the budtender at my local MMJ dispensary told me: that CBN should be used to stay, not fall, asleep--so it should be taken only when the CBD starts to kick in. This experience really reinforced my aversion to being stoned (or buzzed, for that matter). I guess I really am a control freak.

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 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 7, 2019 06:55AM M0mmyof2 wrote:

Thanks gals. Its true about going to more funerals than weddings. The wedding of one of hubby's friends last year was the first one we had gone to in 13 years.

If you value your freedom, thank a servicemember both serving and retired!
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Feb 8, 2019 03:18PM Lucy55 wrote:

Mommy ..sorry to hear about your uncle ..

Iris .. hopefully it all sorted now ..so good to have a friend to go with you .Did you manage to fit in a nice morning tea or lunch while you were out ?

Sandy I HATE nights like that !!!!

Jo ...yes ! All the boxes are unpacked ..except the pictures and photo boxes ...I haven't had the strength yet to try decide where to hang things ...Also we have a staircase where I want to make some sort of a feature displaying family photos ..but inspiration how to organize it hasn't come yet 🤣 I'm open to all suggestions ??? :-)

Trying to get back too normal routine ..off to play table tennis 🏓 this morning.

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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Feb 8, 2019 07:33PM proudtospin wrote:

lucy, too soon to tell if shunt is correct now. But wow, i slept to almost 11 am.......not normal for me, felt wierd when i realized the time, ususally i wake by 8 or earlier

Really wanthis shunt deal straightened out, too many doc apt!

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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Feb 10, 2019 06:50PM octogirl wrote:

Closing on our new house is at nine am tomorrow! WooHoo!

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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Feb 10, 2019 11:43PM jo6359 wrote:

octo-Great. You are finally closing on your house.

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 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 11, 2019 05:45AM Lucy55 wrote:

Octo ..that's great !!! Let the fun begin :-)

Iris ...you deserve a sleep in !! I can't remember the last time I slept in until 11 am ..a long time ago .. it was definately pre-kids !!!


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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Feb 11, 2019 02:38PM proudtospin wrote:

octo....congrats on the house, now onto decorating!

Had pet scan this morn, it is to check on if the xeloda is still working although i think it is not. Onc warned me a while back, next up i think will be ibrance, the thread on ibrance is huge but i am hoping it does not cause the dreaded hand and foot problems which xeloda is known for. I see.the onc on wed for results

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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Feb 12, 2019 02:47AM ChiSandy wrote:

Good luck, Iris. AFAIK, Ibrance & Verzenio's SEs don't include hand-foot syndrome. Octo, mazel tov on the closing!

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 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 12, 2019 01:01PM proudtospin wrote:

sandy , it sure would be nice not to have to deal with dumb hand and. Foot stuff, will find out tomorrow

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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Feb 12, 2019 01:32PM Lucy55 wrote:

Iris ..hoping you get good results from the scan !

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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Feb 12, 2019 01:50PM proudtospin wrote:

thanks lucy, weather is lousy today, so glad no chemo today,

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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Feb 12, 2019 05:53PM jo6359 wrote:

iris-Fingers crossed you get good results from the 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 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 14, 2019 04:08PM Lucy55 wrote:

Been busy ..now that the house is getting more organised we are starting to think about the garden..So that's exciting :-)

Hubby's parents , and his brother and family are coming for lunch today ..so that's a double whammy for me ..I have to tidy up , AND organize the food 🙄

Octo ..Are your renovations ready to start ?

Iris ..hope everything went O.K at your onc appointment !

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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Feb 15, 2019 11:22AM proudtospin wrote:

lucy, thanks for asking, treatment has been changed, seems my cancer is stubborn. I need to get preapproval for the med and that is pending

At least now i wilnot be dealing with nasty hand and foot syndrome, i think my feet already feel better


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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Feb 16, 2019 10:54AM Lucy55 wrote:

Iris ..really hoping the new meds works wonders .Great that your hands and feet are starting to feel better .

1.50 am here .. insomnia strikes again 😕


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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Feb 19, 2019 01:12PM octogirl wrote:

Iris, I hope that med approval comes through quickly!



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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Feb 19, 2019 01:30PM proudtospin wrote:

Thanks octo, they just called and it is approved, i seem to have these things on holiday weekends!

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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Feb 21, 2019 02:54PM Lucy55 wrote:

Iris ..great news the med was approved..and your so right ..if I'm ever waiting on something it always seems to be a holiday weekend as well !

Octo ....is that new hot tub installed yet ?

Have two grandkids staying over tonight..Hubby gets banished to sleep in the spare room ...and I have to curl up in bed and watch kids movies with them and eat popcorn!

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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Feb 21, 2019 03:14PM proudtospin wrote:

not only is the med approved, but got a grant to cover the ridiculus cost, big relief

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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Feb 21, 2019 06:29PM jo6359 wrote:

iris- I'm glad to hear that you got a grant to cover the cost. Fantastic. One less worry.

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 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 24, 2019 09:43AM - edited Feb 24, 2019 09:46AM by octogirl

haha, Lucy, no hot tub yet! But we have taken the first step: met with the door guy and choose the exterior door that will lead from our bedroom to the patio (complete with mountain views) where the hot tub will go....chose a door but it has to be custom to fit the space where the window is now, to avoid more extensive remodel requirements...and that means it is not only pricey, it will take four weeks to get it made! It will be a really nice door, but alas, we are moving back our move in date from March to the first weekend in April! However, I can't totally blame the door: the door guy pointed out that we will need to put new floor under the door to create a good seal, so all of sudden we are using that as an excuse to get rid of the ugly carpet in the master and installing hardwood or bamboo, so floor shopping also... and then since we have to paint around the door and new windows we are putting in elsewhere in the room...might as well paint the entire room, right?

So, you get the idea, I've never done a renovation like this but all of a sudden we are transforming the entire master bedroom and spending much more than I thought...it will be worth it in the end...so now I have a back up plan: if the room isn't done by beginning of April: we are moving in regardless: will put the master bedroom furniture in the garage till it is done, and sleep in the guest room until it is!

Heading out to the new place today, to decide on a color for the door exterior (bringing samples from the door guy), and to take some measurements to figure out if all of our furniture will fit. It is progress, but slow....

Meanwhile, on a more of a Crazytown topic: I had been procrastinating on getting a new MO since moving to New Mexico, but finally have an appointment with one I hope I will like...just keeping fingers crossed that the appointment goes well (in two weeks, so that is two weeks I will stress out about what tests she might order...)

Hope all are having a good weekend!

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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