CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Oct.. Thinking of you.. and DEFINATELY wishing you well (Hugs)
Katy.. I just love shows that have Maggie Smith and Judi Dench in them.... my favourites!
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Thanks for all the nice welcomes, all, and especially the folks who have helped explain things. Ahh, I feel so cozy and at home in this thread. I think this is where I'm going to camp out indefinitely. Love the stories. I am in Gig Harbor, WA . . . a spot on Case Inlet called Rocky Bay. Very quiet and beautiful, sometimes in my Kayak I am the only one out there on the water. Thanks for the blog idea, I had been trying my hand at writing humor at theproducttester.com -- I'm just a little concerned about being too public with my thoughts and feelings. What a hoot that someone on this thread suggested I "calm down." That's kind of what a lot of people in my face-to-face life have been saying in one way or another. They send me scripture about not worrying and God taking care of me. All lovely, but sometimes it's nice to not be calm and just rattle on and let it all hang out. Which I did do and it felt GOOD. And having people actually answer the couple of questions that were bothering me, fantastic! I feel back in the saddle again. MRI's on Wednesday. Meet with surgeon on Thursday. And tonight thanks to you all I am working steadily again for my paycheck. Have a great night, all.
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You don't have to be crazy to come here...but it helps!! It's not really necessary to 'calm down', just as long as you don't get too near the edge. We've got ya, egg
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All this talk about Washington state makes me miss my Seattle relatives. Haven't been there since the Spring '79, after my daddy died. Where their house was, it overlooked Seattle. Hoping to get out there someday after hubby and I are retired.
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Morning Crazies
Tomboy I guess I could write a small book explaining how my journey here came to be. I think when I started posting back in June, I did share the background a bit. Everything leading up to the surgery went quickly, and no I did not have testing before surgery. The book would explain why in detail, but it's really as simple ( some with different perspectives may call it foolish- but it has been my life choice) as I have really never had regular WM in my life.
So I had laser surgery in June and then got MO reco. I met with MO and told him I was strongly considering taking the route of mistletoe therapy with possibly adding herceptin. My MO offered what his course of action would be but he also said he would follow me, whatever I chose.... I think he groked that I was headstrong and wanted to be sure I was in care. He let me breathe and that is/was so important for me.
So the Tests: I was so bowled over by the whole thing that I did wait for the PET. I wanted to wait till after my 50th birthday.... it was just a thing for me. I think maybe I knew it was further along. I am also simply someone who takes a lot of time to digest things, I have a deep need to make some internal sense of big change... so again, I went SLOW.
So here I am now. There is much more to the story.... but this is the bones of it.
I guess I didn't think I needed to explain being crazy in crazy town.
Hope everyone has a good day and octo hope things are easing up; you would definitely be avoiding cherries were it cherry season.
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Octo, sorry everything tastes like metal. For what it's worth, seltzer flavored with lemon juice, tonic water, and ginger ale were helpful when that happened to me. We have a Sodastream, and I used it constantly, could drink flavored seltzer when plain water tasted like soap. I never used the flavorings they sell, just added fruit juice until it tasted right.
Queen, I haven't seen the PBS Wolf Hall, but the book was splendid. It's a dense read, though, needs a fair amount of concentration. On the plus side, you'll learn tons about 16th century England!
I'm in the Downton Abbey camp (January 3: season 6!!), but if I were looking for distraction, I might turn to old Monty Python sketches. For some reason, DS became obsessed with it last year, and we all watched a fair amount of it and then had the good luck that John Cleese was doing a book tour. He came to a nearby theater and was interviewed for an hour or so by John Hodgeman--hilarious. There is also a pre-Monty Python show called "At Last the 1948 Show" that features some of the Python folks and Marty Feldman (of Young Frankenstein fame). You can find them on Youtube. (OK, it's a little arcane, I realize! But Youtube sometimes fits the bill when you don't have the stamina/patience for something longer, i.e. during side effects or Crazytown moments.)
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Rain: the series was a bit more approachable, mainly because they had to cut all the arcane details, but I suspect that might leave some people at sea. I loved Mark Rylance, but a bit dubious about Damian Lewis.
But Youtube's a wonderful suggestion for those of us teetering at the exit to Crazytown, or spang in the middle of side effects. There are a few full-length clips in there, but the shortness of most might work where a movie proved too long.
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ds, I know my mamo center switches from giving results at the time of test to mailing them after 5 years. Dang liked it better when I would wait a few minutes and have my results but glad to be considered routine now!
so I have now become a fan of morning hot showers, makes the bad back feel softer and less pain, who would think something so simple would be such a help? got PT this morning so off soon
yeap this dang thread moves way fast!
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Good Morning Crazy Town inhabitants, Thanks for your support re no info on mammogram after it was done.
Diff. in diagnostic vs. screening Mammo, no radiologist on site when screening mammo is done, so calmer this morning, enjoying the 68 degree morning in usually hot central Texas, breakfast on the patio, which is really a nice little spot hidden somewhere in Crazy Town, amyone ready for coffee and mexican omelet are welcome to join me. It should be on the map of Crazy Town.
Again thanks
dsgirl
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dsgirl, aren't you glad that he crazies were here to answer your worry? I am all for joining you for coffee on the deck!
coffee cup two!
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Good morning crazies...
Cherries? wow, must be out of it, can't fully follow that part of the thread...but yes the season here is over. Long over...I am blessed and cursed to have a lovely big cherry tree in my back yard (sorry, though, it is Bing, not Ranier. Lovely cherries though). The blessing is obvious. When we bought the house the prior owner told us it was 'de-sexed' (cherries must be cross polinated,) and for the first year or so it seemed he was right: but then one spring I was on my patio and saw these glorious little bits of red. Yes, the bees found us and have every year since! (aided with some lavender hubby planted near the cherry tree to attract them). The curse, however, is that the birds love the cherries too: and sometimes I feel like a ridiculously old lady shaking my rake at the birds to try and get them away or at least convince them they should only share the ones on top I can't reach (we have not trimmed the tree as we should I am afraid, so netting is not a good option).
Day Five post chemo: metallic taste continues. I am finding I liked pickled stuff and pasta best, and some mashed potatoes and gravy and grilled chicken that my hubby picked up at El Pollo Loco last night actually tasted edible. Lemon does help in the water, thanks. My stomach is a little less screwed up, so I may actually venture out today if it holds out. Thanks for the thoughts and kind words!
And my first ever Ativan felt like a bit of a miracle drug. Slept like a baby for hours. Even slept through the ninth inning of the Giants game and that was really scary, or so hubby tells me. So I am ok this morning.
Best of all, while the measures say air quality isn't better, it smells better! I can see again! Rain is moving through some of the areas around us....Fresno is getting RAIN!!!!! BLESSED RAIN!!! SO IS YOSEMITE!!! It is cool here, I just heard thunder!!! WOOHOO!!! Probably not enough to put out these awful fires, but enough to ease the job for the firefighters, and enough to make my wood smoke sensitivity much less of an issue on top of everything else.
I am not quite with it enough to come up with gifs today, but come on crazies: help us out: I'd love to see a few RAIN DANCES!
Love to all the crazies. You keep me going.
Octogirl.
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Not much for British Dramas, but I love their comedy. Loved Monty Python and I was a huge fan of the show "Are You Being Served?". That show made me howl with laughter. Wish they'd bring it back on PBS or BBC America.
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Good Morning Crazies!!
Lots to catch up on which I will do later.
In the meantime,
Littleblueflowers, We are all in your pocket this morning!! Sending all our good thoughts your way for your US!!
octo, Just for you, as requested!!
BBL!! Love to all!!
Edited for Typo.
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lol
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Gaia, I was only wondering, everytime I saw your stats. No one has to explain why they are crazy around here! I don't know what WM is though. Anyway, since you didn't have testing BEFORE laser surgery guy, (which I DO remember you talking about), then it was a lucky thing that you refused to do the chemo part of treatment, as it seems most stage 4 gals start out with the most gentle treatment possible, first. But it's just that it seems you could also have avoided the surgery all together, as many st lV peeps start with hormone therapy, as you are. I am always curious, because, I found mine long before I told a doctor(a matter of a couple months). And not even being aware of 'nodes', i sometimes wonder if I foxed myself, because maybe if I went and got the lump looked at sooner, if I may have avoided letting it get to my nodes. And becoming stage 3c. My surgeon said it had been there for eight years, right after she told me she was amazed that I felt it (to me it was obvious), that many women don't find it with their fingers until it is much larger. I found that hard to believe, as to me it was obvious! In any case, she told me it didn't make any difference, but I wonder. And then also part of me wonders if it already was? Is? somewhere else in my body, as it takes a while for things to get big enough to see, with their best tests. Thus, crazy town for me!
It rained last night! For a glorious long time! It was after midnight, so I was the only one awake to do my mild version of dancing in the rain! I held my arms wide open, and turned my face up to it, and smiled, with a thankfulness in my heart and mind!
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Tomboy.. I just love hearing the rain on the roof when I'm I'm bed of a night..!! So soothing..
Mommy.. I love those British comedy shows too.. The Good Life was another oldie but a goldie :-)
Littleblueflowers.. Thinking of you..
Slow.. HaHaHa 😃
My eldest grandchild is 5, and this is his first year at school.. We are off to " Grandparents Day " at his school this morning..:-)
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I hear you Tomboy on the ct thoughts.
I had a soft mass for while that changed with my cycle. I, being me, watched it. Then my cycle started to ebb and flow less frequently. Hello the beginning of menopause! and the mass suddenly wasn't so soft etc. that's when I went into my mental action. Doing some research and having a consult with Dr Cowan the md that does mistletoe ( and he does work with mistletoe with people doing traditional meds as well).
I was also in the midst of a major move, albeit a happy one, yet it came with a variety of stressors including a complete upheaval of my work/livelihood.
Finally this spring I knew it was time to face this thing and I saw a homeopathic oncologist. ( that's for another story). He was like get thee to MSK and get on chemo and reduce that mass ( it had in a month become scarily bigger). I freaked being my patchouli wearing, hardly an aspirin in sight self, but somewhere I knew something was really off at this point.
Reached out to Cowan again he guided me to Ansanelli, the surgeon for a consult. and Ansanelli was like why waste precious life, time and your intact immune system on Neo adjuvant chemo. And yes I was with him because in my crazy universe the knife,rather laser, was cleaner than chemicals. ( this could be a whole new level of crazy). But maybe somewhere my deep intuition guided me to the softest landing. I only had one node test positive and yet it had already migrated to many bones( we still didn't know this obviously)
Up till this recent upgrade to iv I had been thinking of having Mx on the right. I didn't even know once one was iv surgery was off the table. But I'm not remorseful of Having the original Mx.
I hear you about wondering if you had gotten to it sooner. My man and I have talked about that too. but truly I guess there is a part of me that feels our path is our path and I may have landed here anyway inevitably. With a much more compromised immune system and a much more distrupted life. Now it's been a huge left turn but I am trying to make the adjustments bit by bit each day.
Anyway. I'm soaking in some sun. Turning your face toward the rain sounds amazing.
Doing rain dances in my head for the parched CA landscape.
Going to add prunes and squash to what's left of the beef shank for dinner tonight.
Love every single crazy here
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Christine- thank you for sharing more of your touching story. Hugs.
Rainny- I read Wolf Hall too. Some years ago. I'm a hopeless Anglophile and though intense I found it amazing. I can't really read like that now, post chemo. My attention span and concentration (and iq) took a hit. But I try.
Tomboy and Lucy- 🙋🙋Almost nothing I like better than rain on a metal roof. It's about to rain here and I'm on my way in to hospice class, then the library for a visit with Jack. The kids having trouble reading sign up to read to a therapy dog. Instead of a human - really helps them. No judgement. No perceived judgement even possible. I love Jack's job. Will try to get a pic.
Hugs to all my beloved Crazies
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Katy, that is amazing that the kids read to dogs for practice, love that
well hoping the west coast is getting much needed rain, here on east coast it is getting a bit cooler
did my PT this morning for my back and dumb balance, so good to have them tell me I am getting better on the balance stuff, it had been scary really. And the back is actually happier also, it is about time!
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PTS- so glad you are getting relief. Pain sends us to CTown
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Katy, tried a few things of my own, back is happier with a morning hot shower~~so change in life!
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Anyone with back problems..............give acupuncture a try........really........it worked great for both me and my daughter............
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Jack at library club. Before he got picked. A little later he was listening attentively and finally rested his little chin on a little girl's knee. Be still my heart.
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awwwwwwwwwwwww
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Doing a happy rain dance for those in needneed!!!
Doing a happy dance for myself.. scans are stable.!!!!
Fat stranding in armpit (aka axilla) Growing my own bacon I guess
Had same issue on other side lateral to scar. I asked why the RO consult and MO said due to tumor size, but he felt 100% sure no radiation but wanted me to here it from RO ''s mouth as to not second guess. Me???
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Rose- that is GREAT NEWS!!!!! 🎉🎉🎉🎉🎉🎉🙋🙋🎉🎈🎈🎈🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎈🎈🎈🎈🎈🎉🎉🎉👏🏻👏🏻👏🏻👏🏻👏🏻
And sending in the dancing girls...💃💃💃💃💃💃💃💃💃💃💃 (they are doing the happy dance too!)
Thrilled for you.
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Katy, oh, the dogs! I've heard of this sort of therapy before...how wonderful that you and Jack can do this. Do you talk to the child when he/she picks Jack?
Rose, very good news about the scans!
Seeing the BS tomorrow--Crazytown for me though I'm still relieved to be moving ahead. Just not too happy to be losing my breasts. I know, rationally, it's for the best. But it's not our most rational selves that land us in C-town, is it? Sigh. Onward!
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Rose.....Happy news. You can sleep tonight.
Katy, How sweet! What a special furry friend to share your life!
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Rainny- we are strictly advised to limit interaction with the child. It's very hard not to. I said good job at the end, but no correcting or helping. I'm there for the dog and the dog is there for the child. It's all about having fun, making reading a pleasurable activity. The corrections and judgements can come at another time. But if they've learned to love it in the meantime, the corrections hopefully won't outweigh and deter them. Most of the kids had one hand holding the book and the other absentmindedly rubbing the ears of their new friend.
Reading has been a huge part of my life and one if my greatest loves is for books. Helping a young person "get that feeling" is hugely gratifying. Jack is #suchagoodboy.
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Hello everyone, glad I found this thread. It's hard to find the right area to post as I'm not in the virgin territory of never had cancer and worried so the top areas really don't suit me and of course I don't have advance stage to post in those areas so here I am stuck in between: had it, fixed it, maintaining it, but now every little pain, glitch, spasm takes me to the worse case scenario in my head. I don't want to be that negative gal, but I can't help it. Hopefully I will fit in this thread. Tomorrow morning I go for my 1st abdominal MRI (found liver lesion). I never did any Mri,pet or ct scan for my cancer. As soon as I found out I had it I was like cut them off! So there was no need to do any of those imaging. I just hate the night before nervous waiting, being on edge, feeling like I'm going to explode from it all and all the while trying not to take it out on my family. I just want to skip the whole process and get to the results so that I can either sigh with relief or buckle down and get back on the cancer roller coaster. Ugh the worrying never ends does it?
Thanks for listening to me babble.
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