CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Jackbirdie, what a story. I got hit by a rogue wave once in Santa Cruz, watching the surfers near the lighthouse. I was talking to a friend with my back to the ocean. Suddenly she and the whole crowd of people started running. I turned around just in time to get knocked flat on my back. Shocked me since we were -- I don't know 30-50 feet up? How high is that cliff there? I bet Octogirl knows.
I am in Crazytown recovering from the Rads with lymphedema in by breast. Every day it seems to bring some new madness... today I am obsessing at this white blotch on my nipple that turned puffy today. My husband told me yesterday he thought the "white" was actually it's normal color and the rest of it that was darkbrown was still from the radiation. But even he couldn't make heads or tails from that part getting puffy. Do they tell you anywhere the crazy sh*t that happens in the weeks after radiation? The itching is the worst. So hard to ignore it. I've done pretty good. Taking benadryl, it seems to help. The rash on top of my breast seems to be resolving, the one underneath seems to be peeling, is it yeast?! I'm taking some pill that's supposed to fight yeast. Yeah, whatever.
Funniest moment of the day . . . hmm, I have to choose between a leak in the rental, a fight with my hubby, and going through the anger phase of grieving for a dear relative that died on Saturday. Yeah, not too damned funny of a day. But I'll keep my eye out for something . . . something!
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PoppyK, your boy is handsome! What a fun trip. Katy, the ocean is beckoning me in that photo. Btw, you spell your name like we spell my DD's name. My 25th anniversary is coming up this year. I have been trolling pinterest for cake ideas. Some are really fun. My son said our cake should say "25 years of arguing and we still do" lol.
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What a story, Katy! So glad you made it to dance with NED and the rest of us! Actually, though I imagine the ocean pushed you to do it, being on all fours is exactly the right way to deal with getting out of surf if there is any doubt you can make it...they teach us in scuba classes to crawl out of the surf. (more stable that way, but edited to add: of course, we are also taught to keep the regulator in our mouth so we can breathe. harder to do with no scuba gear). When hubby got certified in Monterey (years after I did, he took up scuba for me and now loves it too :-)) it was one of those perfect days with lake like conditions and maybe a few 'ankle biter' waves...I can still remember them practicing the exit crawl, and the instructor yelling at them: 'Pretend there is surf! Crawl Crawl! Pretend there is surf!' It was pretty funny for those of us watching...and egg roll: I guess you learned the lesson we learned in scuba class: NEVER turn your back on the ocean (unless you are on all fours and crawling out quickly...even then you are supposed to watch the waves and time it first)...yes, I know that cliff, sounds like a very impressive sneaker wave!
what, you all are wondering if I am certified crazy? No, no, no, I meant certified to dive. Really! :-)
Also for egg roll: my rads skin peeled and had a bit of the white stuff you describe, got worse for about ten days post rads...and then finally started healing. The good news: once it started healing, it has healed very quickly! No more itching, no pain, you can tell skin was peeling but the new skin looks almost normal...and I am less than three weeks after last rads. It really surprised me how fast it heals. See RO if yours doesn't start looking better quickly, but remember that it will get worse after rads ends, before it gets better.
Yesterday's apt with my retinal doc was fine, if tedious due to the tests. No surprises: bad eye is no better, but no worse, and he wants to see me again in a year to be sure it doesn't start to get worse. (they did both vision tests and scans). His opinion is that there is no point in operating on cataract in bad eye, and that cataract in good eye isn't bad enough to justify the risk of surgery at this point. In fact his exact words were 'personally, I think anyone would be nuts to recommend you remove it yet.' He did say the arimidex could make it worse and to call for an apt if it started to really bother me. However, as I told him, honestly, I am happy for a break from any surgeries and unless it gets noticeably worse, he probably wouldn't see me until next year. He really is a sweetheart. Asked me how chemo went, and when i shrugged and said that at least my hair is starting to come back and that soon I'd have as much as he does, he looked a bit surprised and said, 'oh, I didn't even think about you not having hair: you are one of those people who looks so good in a hat that I just thought maybe you were wearing it for looks.' Yeah right, I had to push it back to keep the brim out of the way during the tests, but it was sweet of him to say. So, all in all, that particular doc visit helped lift me a bit out of crazy town, where I have been spending too much time lately.
Speaking of hair, hubby says I have reached the Sinead O'Connor stage. I will take that as a compliment. I am, doc's statement to the contrary, SOOO tired of hats that I am thinking of going commando soon...
That's it for now. Another crazy work week. Sending love to all the Crazies..
Octogirl
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Hello all -
Digging out from our nearly 30" of snow here. It was so pretty, and I got a ton of knitting done, so I don't mind.
Eggroll - my skin held up well during rads, but my nipple is still raw, swollen, and seems sort of inverted at the same time. I can also see that there is peeling, but I can't really get to it. Breast skin looks a bit singed, with some odd white patches. I'm just moisturizing every day.
Octo - Sinead is good! My husband told me last night that I had entered the gladiator phase - straight across the forehead fringe! Sexy!!
I switched to Arimidex over the weekend also. So far, so good - just some aches in the knees and hands, but I have that anyway from the lupus. I hope everyone is staying warm and dry.
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Octo- touchė. A very good story as well. I'm just glad for sentimental reasons I have always used a very long, home-made (by my bff's dad) leather leash for Jack. He doesn't like the water at all, and was a very brave boy. Yes good advice. Never turn your back in it. I was perpendicular, but they are so "sneaky", those sneaker waves. So glad to hear the eye appt went well, and that your doctor was so kind. Any ticket, even a short term stay, out of CTown is a good one. So happy your exterior is starting to match the rock star interior we all know and love! And that the healing from rads has gone so well.
Pennsy- glad you survived and even enjoyed the snow and got some knitting done! Glad you have advanced to "gladiator, and that the last bit of healing comes soon for you. And that you don't even notice the Arimidex!
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I called my PCP this morning for some advice about my back, and he ended up sending me for an xray this morning. They are supposed to call me sometime today with the results. Hello, Crazytown!
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Hello crazies! Well, I've been off this board for a bit, but reading everything. I'm sad to hear of those who are dealing with new, and existing struggles, and happy to hear about those who are doing well on this journey... I got sad news this past week and took a wrong turn down a side street in crazy town that led me to a road with no street lights, lots of scary noses and eerie thoughts.
If y'all could offer a prayer for my dear friend Glynn. His wife died 10 yrs ago after a long battle with BC, he remarried and is so very happy. He had a brain tumor several years ago, had it removed and was doing well. He was just diagnosed with the brain tumor back, AND stomach cancer.. He's having stomach surgery next Tuesday, then the neuro will see what is to be done...
Here I was worried about taking Tamoxifen vs OS/AI, and recurrence, and all the crap that comes with the thought process of this disease and this news hits... makes my stuff seem so very small and insignificant...
I long for a happy day! I'm heading to the porch, with a blankie, and a tall latte. Sorry for the sadness... I just need you sweet ladies right now...
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Jersey- offering it up for your friend. So very sorry. I'll meet you on the porch with the Ativan sprinkles. 🙏🏼
Cubbie- in your pocket while you wait.
Crazytown is a bit of a revolving door. Often I think I'm on my way out into the sunshine again, only to find I've been whipped right around into a busy traffic circle of fear and darkness. That's why we arranged to have soft lights on, even at night, so nobody will lose their way. Hugs to all today.
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Jersey, definitely will keep Glynn in my prayers. I am so sorry. Octogirl, I am glad your eye has not progressed. Here is one of the reasons I need to stay healthy. Sorry that it's side ways. I cannot get it to correct, lol. This is my precious grandson.
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Cubbie, in your pocket!!
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Molly- here you go. A very good reason indeed!
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Thank you, Katy! For a technology person, I sure get tripped up and impatient sometimes!
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molly, adorable little man they'll dark
Just spent the last hour discussing billing junk with medicare, so fun but seems we fixed a goof so guess that is good
Cubbie, you also have a tall dark and handsome guy there, Paris, must have been wonderful
Jersey is melting and quickly it seems so good
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Thank you. That little guy owns my heart for sure. Well he and my special needs DS.
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Jersey, I'm so very sorry to hear about your friend. You're right, and something like that takes us away from our own concerns, but what a sad reason to do so. I hope he finds some positive results from surgery and from the neuro consult.
Eggroll, try Sarna. It's an OTC anti-itch cream that I found (still find) useful after rads. Because the only other time I can remember itching on that scale is after poison ivy. As for white patches, yeah, white, tan, red. I think it's all normal, but I did feel for a while that the rads area was like some sort of demented chemistry set--only it was my body. It will pass, I hope sooner than later. In the meantime, Sarna, aquaphor, ibuprofen--and chocolate.
Welcome back, Sinead, er, Octo. Do you think your eye doctor would be willing to make some east coast house calls? Because he sounds like a really great and supportive guy. Delighted to hear that no intervention is needed just now, other than, for a limited time, hats.
Pennsygal, no knitting through the blizzard here, but there was plenty of baking. And shoveling. I'm just beyond the gladiatorial stage and find myself vaguely surprised that hair doesn't part naturally, that at some point one has to do something about that.
Cubbie: what the others said about the (big, stretched-out) pocket! Hope it's just the doc being cautious.
Molly, awwwww! So very cute! He looks terribly mischievous, in the best possible way.
Proud, glad you straightened out Medicare. We are also melting here in NYC. Or maybe flooding would be more descriptive, in a sea of yellow-brown slush!
DH has gone to the gym. DS is in the next room working on a final project for a computer design class and cursing softly to himself in a fake English accent. Not goin' in there, no sir!
Peace to all and hugs to all crazies, including those who are quiet. Thinking of you, Beppy, Gaia, Shorfi....
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Rainny - the English accent is back?!?!?!?!?!
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Fraid so. There was this whole Monty Python/Fawlty Towers phase, and then my Downton Abbey obsession probably didn't help matters. And then the Lord of the Rings movies....the Marty Feldman Youtube tour (which I recommend highly)... It's hopeless!
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I got a call from the doctor's office - the xray looks good. Thank you to Molly, Katy, Rainny, and everyone else who was in my pocket with my cell phone today!
Eggroll, I have been itching like crazy with rads. It was waking me up at 3:00 in the morning, and I couldn't get back to sleep because the itching is just insane. The funny thing is that what helped me the most was going for a day without anything on the area. Don't tell my RO! I doubt they'd ever recommend doing it, but seriously, letting it dry out a bit helped a lot. It makes no sense whatsoever.
My skin color is crazy - I'm a really dark red, except my armpit gets sort of worn away by the friction in that area, so it is a light pink. You know how monkeys have lighter colored butts? Well, that's what I've got - a monkey butt armpit.
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Molly.............adorable
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Cubbie- so relieved. On to healing the monkey butt! My, what a laugh you gave me today! Thanks for exploiting yourself for my benefit!
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Jerseygirl, prayers here for Glynn. I hope they caught the stomach cancer early, and can knock out the brain tumor again. I had a co-worker's whose daughter had a brain tumor that was a bit like that - they would go in and debulk it, and she'd be good to go for several years until it needed to be done again. They couldn't completely remove it because it was too close to the brain stem.
Iris, I've got you beat, I spent an hour and a half yesterday on the phone with the insurance company. They are rejecting one of the hospital's claims, and even they can't figure out why. There must be a special neighborhood in Crazytown for insurance problems. Everyone there is bonking their heads on their desks and listening to their insurance company's hold music. Or the hospital's on hold commercials. It's funny, I think I've cried more talking to the insurance company reps than anybody else. It's always the absolute last straw in this whole mess.
Octo, glad to hear the eye doctor visit went well and you are rocking that hat.
Katy, it looks as ridiculous as it sounds!
Waving to Pennysgal, Rainny, and Ducky, and thinking of Slow and Gaia.
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Cubbie, you're looking for the wing of the Crazytown mansion for those with insurance problems? Right this way! Here's your host....note the chemo salon hairdo...
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Monkey butt armpit! Hilarious! I had that. My skin was so red it was purple and then my armpit started peeling, then under my foob, then everything else. Funny thing is that I started peeling yet again over the weekend and I am about 7 weeks out of rads? I still use my lotion twice per day. Cubbie, great news!!
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cubbie, hope your Insurance works out
Dang but may have messed up my new notepad
Dang it all
Made an apptmententmwitj with,a different spine Nguyen to get a different opinipn
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ok, so clearly messed up the above post, sorry
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Molly I have a grandson that matches yours! They could be twins!
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They say we all have a doppelgänger somewhere! I wonder if mine is flat chested.
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omg Cubby, monkey butt armpit? I am sitting here laughing my ass off haha!
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yay for good X-ray results Cubbie!
Octogirl
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Love to the crazies....
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