May 12, 2018 05:50PM ChiSandy wrote:
I don't get scanxiety as much as I do lab-xiety (glucose and CBC, espec. H&H and ferritin), but major-league...scale-xiety. (I dread the lectures).
For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.
Posted on: Jul 18, 2015 07:14PM - edited Feb 20, 2016 11:31PM by SlowDeepBreaths
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:
Posts 13951 - 13980 (14,382 total)
May 12, 2018 05:50PM ChiSandy wrote:
I don't get scanxiety as much as I do lab-xiety (glucose and CBC, espec. H&H and ferritin), but major-league...scale-xiety. (I dread the lectures).
May 14, 2018 03:07PM - edited May 14, 2018 03:08PM by Lucy55
We ended up with a fun Mother's Day weekend ...Went to my son's house Saturday for early celebration ..as they couldn't make the big family one by the water Sunday ...I'm SURE I ate too much though 😯
Sandy ..yep ..I have lab - xiety too ...because my BS checks the tiumour markers as well as the CBC etc !!!
May 15, 2018 01:36AM ChiSandy wrote:
My MO doesn't do tumor markers on asymptomatic stage I or II patients--she says that they're not really predictive.
May 15, 2018 08:34AM proudtospin wrote:
i had my visit with pcd a week ago, she likes to do a fasting blood workup, i take statin so she is checing stuff. Shock this time, my cholesterol was 185 which is the lowest i can remember. Wonder if my new blood thinner is helping to lower the cholesterol? Not complaining although i stubbed my toe the other day and wwas shocked by how much my toe bled!
Me, i am current nervous about all tests!
May 15, 2018 07:29PM ChiSandy wrote:
185 is wonderful--the statin is definitely working! (Especially if much of that 185 is due to high HDL). I'm not aware of a connection between blood thinners & lipid profile, but you never know. However, (mostly-)clean eating and exercising (as, IIRC, you said you were resuming) are probably more responsible for that great blood lipid score.
Have to wait another 2 weeks to see the hand surgeon--he & his wife just had their third baby, and he's on diaper duty till the 30th. So no PT/OT just yet--just the usual mild painkillers, gels, moist heat, ice, elevation and night splint-bracing till I see him again. (The heat is for before I practice guitar or dulcimer and the ice for after--though he'd rather I not play; I have gigs again every weekend in June, and I have to rehearse for a couple of them, so "no guitar" ain't gonna happen). Last night I couldn't sleep because my forearm was burning all the way to the elbow, so I had to pop a Lyrica--which made it tough to get up. (I have really entertaining dreams when I sleep, and the down pillows & comforter feel so good; Lyrica makes sleep feel wonderful--especially during the brief awakenings to turn over and clear my sinuses, knowing I'm getting good sleep and I have time for more of it).
Thurs. morning I have to go all the way up to Lake Bluff to see my derm. (She keeps moving offices w/in the NorthShore system, but I'd follow her anywhere). It's my semiannual skin-mapping appt., which became necessary after she had to remove and biopsy a couple of small moles, one of which was suspicious for melanoma (it was just "highly atypical" but I got MRSA in the wound from the punch biopsy--probably from a colony on my skin).
May 16, 2018 09:24AM octogirl wrote:
I have an appointment with my derm week after next....this is a yearly checkup, the last time they did remove one mole and biopsied another. (it was benign). Hopefully all will turn out well this time around.
So, I couldn't sleep last night, and realized that there is a lot of stress and uncertainty in my life right now, and yes, it is making me crazy! First off, hubby, who has been unsure of his retirement date, finally decided and just filed his paperwork to retire August 1st. I am happy for him, but it does mean lots to do! As I think I've mentioned before, we have already bought our retirement home (in Reno, Nevada) but it is now time to get serious about moving and selling our current home in California. I am particularly anxious to get it done quickly because my personal take on the market in my town is that it is a seller's market (very low vacancy rates even though here in the great Central Valley housing prices are not ridiculous the way they are in SF or LA) BUT that the market is very volatile and could turn for the worse any day now...So, we want to get out while the getting is good!
But, so much to do: the new place is a bit less than half the size of the old place (we are going from about 2800 sq ft to 1300) so we need to get rid of a lot of stuff: including boxes still packed and stored in the garage from our last move nine years ago!
and, of course, life throws curve balls just when things appear to be on one path: my dream job came along, in another state, nowhere near here or near Reno, and I decided to apply., sort of on a whim. A phone interview Monday went very well (I think) and I anticipate that they will probably want to fly me out for an in-person interview the end of the month or in early June. So, I am struggling with the question as to whether I really want to stay retired, or not. Fortunately (or unfortunately, depending on whether I really want the job or not), the job is located in an area that hubby loves and has always dreamed of living in (but that we didn't consider for retirement because we knew no one there and wanted to be near family, as we would be in Reno)....and of course having income again in addition to my pension and the small amount of income I have from the consulting I am still doing would be nice...but there would go my plans to spend more time traveling, being with my grandkids (of course the job is no where near them), and having more time to volunteer for some good causes (mostly political given the state of the world and the country and the upcoming midterms).
and BC does play a role: should I go back to work doing something that I think I would love, or should I spend time doing the things I want to do more of?...for me, part of the answer depends on how long I am likely to stay healthy, and who the hell knows the answer to that one?
So, that's my news. I am packing up a house to sell, but am not sure where I will end up next! I only know with any certainty that it is highly unlikely I will stay in the Golden State. This is not necessarily a bad thing, but stress doesn't have to be from bad events to be stressful. Stay tuned!
Sending hugs to all;
May 16, 2018 10:36AM proudtospin wrote:
Octo.....wow you do have some serious choices to make, best of luck in your decision and it sounds to me that all are good.
Sandy, gonna talk to my onco about the new cholesterol number even though she was not the one who did it. Maybe my chemo med is affecting my cholesterol? I have battled high cholesterol for so long...just shocking! In a good way
Went to gym this morn, my pal Mike came over and send he had heard from another pal whose wife has uterine cancer, she has been transfered to hospice. I knew she had cancer but had not heard and status and this pal has had enough tough things
May 16, 2018 08:45PM ChiSandy wrote:
Sorry to hear about Mike's friend's wife, Iris. Some people can never seem to catch a break. Wouldn't be surprised if your chemo med was affecting your cholesterol, one way or the other. I know AIs can raise both blood sugar and blood lipids. Everything seems to be connected the older we get.
Definitely in non-health-related CrazyTown today. First, our garage door opener was malfunctioning (the remotes could only open, not close the door; and to open & close the door from inside we had to keep the button on the wall pressed until the door was fully up or down). Got some bids late last night, one of which promised a callback at 10 am to set up an appt.. Well, the phone rang--from another bidder--at 8 am (and I'd gotten to bed at 4:30 am), who said he'd be here between 4 & 5. (The first guy never called). That became between 5 & 6. He got here about 6:45. Fortunately, as I suspected, it was just a misaligned sensor...the one Bob admitted he'd grazed last week backing out of the garage. I didn't want to do the alignment myself, as I had no way to verify it was positioned properly and I feared breaking wires or shorting something out (and the sensors were way down near the floor--not good for my knees or back). So I'm out $75 for the service call, but at least I didn't need to buy new remotes.
Then, one of my range hood replacement halogen bulbs arrived from Amazon. I've been cooking without hood lights for almost 2 yrs and was getting really fed up. (The knob for the light switch also cracked and fell off--a replacement for that is on its way). I watched some YouTube tutorials on how to remove the old bulb and install the new one. So I tried. Easy enough to remove the old one, but trying to get the new one properly seated and then in securely was driving me nuts. (Needed a mirror & flashlight--every time I leaned over the stove to try and see, my belly & boobs kept hitting the electronic keypad for the oven). It would seemingly click in and turn on, but kept falling out. I finally had to use rubber gloves to get enough purchase on it to turn it sufficiently to lock it in. The other bulb arrives tomorrow.
Housekeeper is off for an emergency--her BFF flew in from B'ham last night to be by her dying mom's bedside all night, and she's staying with my housekeeper tonight.
Then I got my new landscaper's invoice (he was this season's snow guy first). A bit pricier than I thought but still ok. He wants to be paid by Zelle (used to want Venmo). So I went to the website of the bank with the higher checking acct. balance--and got stuck in an endless feedback loop trying to send. Had to call web tech support and have the guy walk me through the process--and when I was finally able to hit "send" got to a page that said "We're sorry, but we're having a little trouble at our end. Please try later." The support tech told me to try a different browser (I use Safari, and he was shocked that anyone uses anything other than Google). Opened Firefox, only to be greeted with "Your version of Firefox is out of date." No way was I going to take another half-hour to update, install & reconfigure. So I had to exit & reopen Safari, clear my browser history and try again. So I did, and finally was able to send the money. There went an hour of my life I'll never get back. And another 20 min, trying to remember all the tabs I had open beforehand, and log in de novo for each website.
I know I should try to diet, but my feet want to take me down the block to Lickety Split for frozen custard...or to Whole Foods for cannoli. I have a freezer full of low-carb ice cream--all of which has that gross gummy texture that sugar would have prevented. At least I'm done with the Medrol Dosepak I had to take so my wrist would allow me to play my gig up in Madison last Fri. night. Today was the last pill, in the morning. The steroid made me ravenous. (And it's a much lower dose than would be prescribed for chemo or asthma). Dinner was one of those mix-in quinoa salad cups. Yummy but nowhere near filling.
May 18, 2018 03:42PM Lucy55 wrote:
Iris ..so sorry to hear about Mike's friend ...awful news ...
Octo ..Decisions ..Decisions !!!!! You choose , but don't let BC play any role...it's already robbed us all of enough ..Looking forward to hearing what you decide !!!
HaHa .. looking forward to watching the Royal Wedding tonight ...Australians rotate between saying we should become a republic , to loving nothing more than a royal visit here -:)
May 18, 2018 03:53PM octogirl wrote:
Iris, I am very sorry about your friend...cancer sucks!
and thanks to you and Lucy for the words of encouragement about decisions, decisions. I like the idea of not letting bc play a role; you are right about that, Lucy! However, the decision is now on hold, sort of, as they called me and do indeed want to fly me out for a full day of interviews for the dream job, and are encouraging me to bring hubby along as well (at their expense, which I did not expect!) so he can get a feel for the region (but as I mentioned he actually knows the region pretty well, and loves it)..so...it sounds like they are seriously interested...BUT...the interview is not going to be until the end of June....more time just to think about it all.
So, we are up in Reno this weekend painting the condo up here. Regardless of whether we actually live up here, we definitely want to sell our other house soon, and if we decide to keep this Reno place but live elsewhere, painting will help make it appealing as a rental..and in the meantime, I hope to spend a lot of time with my grandkids in June!
Haha about Australia and the royal wedding...Or should that be Royal Wedding, capitalized :-)) We get pretty fixated as a country here too, I think...I won't be watching, however. Just too early in the am my time!
Hugs to all
May 19, 2018 01:22AM ChiSandy wrote:
Have to stay up till 2am to give the cats their kibble (they can actually tell time)--used to be Gordy's job but he's away at Leslie's place all weekend. Part of me says pull an all-nighter and watch the wedding, which starts at 4am here; but I have a voice lesson at noon.
May 19, 2018 10:46AM proudtospin wrote:
oh dear Sandy, the dictates of loved pets! Passed my monthly mo checkup, sort of figure next month will include another pet scan but putting the though behind me and praying for continued good things.
My primary care started me on 50000 b12 each week, i just read online it is good for nueropathy so hoping my dumb feet may start feeling somewhat?
May 22, 2018 06:00AM Lucy55 wrote:
Iris ..great news your check-up went so well !
Octo ..Happy painting ! I actually really enjoy painting ...so rewarding to see how clean and fresh it makes the home look ..for not much work ( seeing I make Hubby do all the preparation work, and the clean up ! ) or money ! :-)
May 22, 2018 09:17AM proudtospin wrote:
lucy, if you need some dirty walls to paint, come on to Jersey, my balance is punky so no getting up on ladders for me!
My neighbor called me last night, seems they were concerned as i did not open my front door all day. Great to realize they are checking on me. Great neighbors!
I got a coupon for my birthday from my favorite seafood restaurant so thinking or hoping tommorrow iS nice and sunny for a trip to the coast
May 22, 2018 11:28AM Cubbie2015 wrote:
I birthday coupon sounds like a good reason to go out to eat, Iris. Enjoy!
I'm back to the dermatologist tomorrow. I just saw her about a month ago, and in the meantime, I had a small pink bump pop up on my chest, up near my shoulder on the non-cancer side, which I initially thought was a pimple. I do have bad skin and regular breakouts. This won't go away, however. Three weeks later, and it still doesn't look any different. I saw my GP yesterday for a blood pressure checkup and he says he doesn't know what it is, but says it is not a pimple. Looks like I'll be getting a skin biopsy tomorrow.
May 22, 2018 12:16PM pennsygal wrote:
Iris, Happy Early Birthday!
Cubbie - arrghhhh!! Biopsies are now a way of life for us....
May 22, 2018 01:07PM proudtospin wrote:
thanks pensygal, today is sort of cloudy so hoping for a good day tomorrow, love any day where i drive to coast and eat seafood! Hmmmmm, solfshell crabs are in season so ........
May 22, 2018 07:14PM duckyb1 wrote:Hi.....just letting you know I”m still above ground and taking nourishment.......I do keep up with all of you.....
May 23, 2018 12:19PM Cubbie2015 wrote:
Ducky, I always say that nobody is more busy than retired people! Going to the shore sounds like fun. I'm in the midwest where the only shore is the riverbank. Not that exciting.
The dermatologist said the spot on my skin looked like it might be basal cell cancer. I had a spot of basal cell cancer on my face about this time last year, so it's a definite possibility. They went ahead and did a biopsy. I'm hoping it's nothing worse than that.
May 23, 2018 01:02PM proudtospin wrote:
welcome back ducky. Yeap i just got back from lunch at the coast, gorgeous day and softshell crabs are in season! I went a dizzy doctor a few years ago, he gave me some info and basically said my balance was messed up. Actually my pt person told me my ankles were weak and she has given me stretches to strengthen my legs, that has helped.
May 23, 2018 04:21PM octogirl wrote:
Glad you had a great lunch, Iris and Happy Birthday!!!
Cubby, in your pocket for the biopsy results, finger crossed it is nothing...I have something weird on my leg that Derm will be checking out next week....I think it looks like a wart, but I didn't think just below the knee was really a location for warts...sigh.
Lucy: hah! I don't love to paint, but I confess, we hired a crew to do it: it was just more than hubby and I wanted to take on ourselves...they just finished and I have to say I LOVE the way it came out.
Good to hear from you Ducky and Pennsygal and hugs to all!
May 23, 2018 06:11PM ChiSandy wrote:
Happy birthday, Iris! Good to hear from you, ducky & Pennsy. Cubbie, hope it's just something benign & annoying like a sebhorreic hyperplasia, keratosis, or ingrown hair (yup, had one in my cleavage which got inflamed).
What's driving me crazy right about now is a plague of ants on our breakfast nook table, to which I came home today after my mani. I have emptied all bowls & baskets of stuff that isn't sealed, and cleaned them and vinyl placemats in hot water & dish detergent, and zapped ants dead repeatedly (5 x now) with Lysol all-purpose cleaner spray (don't want to use insecticide because of our cats). They even got into my thermal shopping tote, which I filled with soapy hot water and dumped several times. My housekeeper did the same several times too before she left for Alabama last night for her DGD's h.s. graduation. Of course, when the exterminator comes on the first of the month there's no sign of six-legged critters. I don't know where they're coming from--I don't see a nest or a trail of them. But every time I go back to the table they're swarming. I might buy some ant traps and supposedly pet-friendly bug spray, but if that doesn't work I'm gonna have to call the exterminator & sequester the cats.
May 23, 2018 10:04PM rainnyc wrote:
It is a treat to log on and see everyone's news and stories, even if it involves ants or scans or skin eruptions or other anxieties.
Praying for Wyatt, Molly.
Exciting to hear about your new home and job possibilities, Octogirl.
Iris, I'd missed the fact that we're in soft shell season. I will have to do something about that. And happy birthday!
I've been utterly caught up in family, as my mother died April 27. In spite of Alzheimers and stage 4 cancer, the latter of which she had elected not to treat or diagnose further, she lived fairly independently until mid-February. She was on hospice for the last month, and they were wonderful and very caring. My husband and I were with her at the end. Because several grandchildren were away at college, we elected to postpone the memorial service, which will be this Friday. (Not the standard Jewish way of doing things, but she would have wanted all the kids there.) I'm going out there tomorrow and will do those last bits of party planning, as well as trying to finish a eulogy of sorts. The rabbi's advice was: "I do the resume. You do the stories." My brother will speak, too.
I know I've said it here before, but Atul Guwande's Being Mortal was an incredible help in thinking about ways to keep my mother independent and comfortable as her life became more constricted. We were able to keep her at home, and the book helped us see clearly how to make that choice.
Love to all Crazies....
May 23, 2018 10:58PM ChiSandy wrote:
So sorry about your mom (z'l), rain. May her memory be for a blessing. And don't sweat the delay in the memorial service--though some people say funerals are for the benefit of the living, the departed's wishes should be honored. Better everyone who loved her and wanted to pay their respects get the chance to do so than she be interred w/in 24 hrs. per halacha.
My dad died on a Tues. night but we waited till Fri. morning for the funeral so we could calmly make arrangements and everyone could fly in. When my mom passed away at home of cor pulmonale (CHF caused by COPD), we had to wait a few days before her funeral in FL. Not everyone could fly down there, so we held a second service at graveside on L.I. where the family plot is located. The FL service was packed, since her neighbors and Pythian Sisters attended. She specified earlier that whatever kind of Jewish funeral she'd get, she wanted it preceded by a Pythian service (Mom was a past Grand Chief before her lodge moved lock, stock and barrel from NYC to Pompano Beach). It was very moving--all her lodge sisters dressed in white, laying four different species of flowers atop her casket and explaining each one's significance; reading the Yom Kippur Yizkor service poem "We Remember Them;" and then the Grand Chief gave a reading from...the Beatitudes. I give the funeral home's Conservative rabbi credit for not visibly flinching. (Mom came along on our three neighborhood congregations' interfaith trip to Israel and fell in love with the Sermon on the Mount when the parish's priest recited it on the very mount where it was first given). My sister and I gave eulogies, but my sister's was amazing--both touching and funny. And the repast--rather than a few deli platters at her condo, which is traditional--was at her favorite restaurant in Delray Beach, where she was a regular and the staff joined us in toasting her life.
We then accompanied her back to JFK via JetBlue. Bob remarked that her casket's fare was twice ours--and he said it was so unfair that she didn't even get the free snacks and live in-flight TV. We had her few remaining relatives (plus my in-laws and Gordy's friend then at NYU) attend. There was nowhere around the cemeteries to eat, and my cousins had to get back to work, so we went to the Polo Grill at the Garden City Hotel. A year later, my cousins hosted lunch after her tombstone unveiling.
Mom was on home hospice, but they kicked her off after 6 months. She made it a couple months longer.
May 23, 2018 11:03PM octogirl wrote:
rain, I am so sorry for your loss, but I am sure that the party Friday will be a good celebration of her life. Sending love your way....
May 23, 2018 11:06PM ChiSandy wrote:
And Being Mortal was an amazing book. It definitely has me wondering how I'd like to deal with end-of-the-line (even if not immediately end-of-life) considerations. I'm still struck by the author's dad's wish to be able to enjoy his chocolate ice cream as long as possible. Yesterday I was reading a Jane Brody column in the NYT about how to age in place, which had a link to Ezekiel Emanuel's (Rahm & Ari's kid brother, an oncologist & public health activist) article, written at 58 (he's 60 now), about how he'd decided that he was drawing the line at 75 for the end of any care other than palliative, no matter how good a shape he was in. At 65, no more colonoscopies, tests, or even flu shots. I'm not sure I would be that sanguine--I have a long bucket list and no grandkids (Gordy, while in a serious relationship, is not yet married and hasn't quite yet "launched" in a mature long-term vocation).
May 24, 2018 01:30AM Lucy55 wrote:
Rainny ...sending love and hugs ..I hope you all have a beautiful day on Friday remembering your Mum ...
Ducky ..gosh ..so much going on with your family ...which continues to GROW 🤗 Enjoy it all !!
Iris ..glad you enjoyed your lunch !
Hugs to all
May 24, 2018 09:35AM Cubbie2015 wrote:
Rainny, so sorry about the loss of your mother. I'm sure your family will miss her a lot.
Sandy, I have the weird swarm of ants in my bathroom. They are just on the counter to the right side of the sink. I can't figure out where they are coming in, or what on earth in the bathroom would attract them. Maybe the smell of toothpaste or shampoo? There's absolutely nothing in there for them, so I can't figure out why the bathroom and not the kitchen where there at least would be food. As soon as I clean them all off, they mysteriously reappear over the next half hour or so. I've even considered whether they are coming through the wall and out the nearby electrical outlet.