CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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(((proud)))
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Molly, you don't have chemo brain or Alzheimers--you have "CRS Disease" (i.e., "can't remember squat"). Stress will do that with or without estrogen or drugs. And you certainly have stress. If it turns out that your knee pain is NOT from the AI, take heart that knee replacement surgery is eminently doable--rehab is a bear, but you eventually feel SO much better than before! Brithael & I went through it (at opposite ends of Chicagoland) at the same time--our boobs misbehaved but our knees are fabulous!
Jan, here's hoping it's not pulmonary emboli. And even that, if headed off at the past, is reversible.
Iris, so sorry about the back pain! When mine locks up on me (about once a year) I find that the following things help: a muscle relaxer (Valium or cyclobenzaprine, aka Flexeril); if your gut can handle it, an NSAID with opioid, such as Vicoprofen--but if not, then a regular opioid such as Norco 5/325; Voltaren gel (OTC in Europe, as "Voltadol Forte", Rx Stateside); Flector patches (Rx everywhere but Spain, crazy-expensive but they work); ice, ice baby at first, then heat as it begins to loosen up; Max-Freeze or Bio-Freez roll-on (OTC everywhere); arnica gel; and recently, a little battery-operated home TENS unit. Omron's is only about $40. Oh, and this mantra: "it's only pain." I even wrote a song the last time it happened:
Pain, pain, pain never killed anybody.
Pain, pain, pain never pillaged a village.
Pain, pain, pain never maimed anyone.
So shut up and quit'cher bitchin!
So this morning I slept till a luxurious 9:30 am. Got down to breakfast just before they started to tear down the buffet. Came back, finished packing and met my friends down in the lobby, where we proceeded to share a cab to the station. I had a little time to kill, so I ducked into a pharmacy and asked for antibiotic ointment. The pharmacist said I'd need a prescription, and then asked me to take the band-aid off so she could see. "Get to a doctor right away--that pus means it's infected and you could get cellulitis any minute." I told her it's been like that for over a week, and have a Keflex scrip just in case but I didn't want to use it prophylactically (because since I have a penicillin allergy it's only a matter of time before I develop a cephalosporin one too). "Well, go to a doctor as soon as you check into your Paris hotel," she warned, and sold me a packet of Tegaderm dressings and a tube of silver-sulfur cream (warning me it probably wouldn't be enough but it was the strongest she could sell me).
Meanwhile, our track was at the other end of the station, necessitating one of those hold-on-to-your-spinner-bags-for-dear-life "gangster-lean" stances down a long sloping moving walkway...and then, when we got to the entrance to our track platform, STAIRS back up! No ramps, escalators or elevators. But for the kindness of strangers... (What do those in wheelchairs do? There is a wheelchair lock-down section in each first class car--how do they get there)?
So all the way from Lausanne on the "Lyria" TGV, the thought that I might succumb to sepsis kept haunting me, even as I gazed at the scenery and tried to listen to music (stinkin' iTunes now puts all your music in the cloud, so if you're not online, all you can listen to are purchases you actually made using that device). Was interrupted by a lovely cold lunch of quinoa pilaf salad, chicken breast & wild rice, herbed chèvre, roll, caramel-sesame muffin, red wine & coffee. (Was disappointed by the local Swiss wines from the Vaud canton: chardonnay was heavy and oaky and the pinot noir was acidic and tannic--totally unfriendly. I remembered the light and crisp Fendant white and the equally light but fruity Dole red--but I guess those are from the Valois further up in the Alps).
So here's how I learned that CrazyTown is not always an online construct, but rather, sometimes an actual city:
Was met at the Gare du Nord by a porter who took all of our suitcases (for the four of us) and led us out to call a cab. No dice--the "manifestation," as the French call a strike protest demonstration, was in full swing. Nothing was moving around the station--except thousands of workers on foot and on floats (some of which had balloons, brass bands and cymbals). The porters took us down the elevator (hey, this was Paris, not some sleepy little Swiss hi-tech village) to the underground taxi line (at the upper level, it was chilly and rainy, unlike Lausanne). When we got there, we told the dispatcher where we were headed--he shook his head and informed us that nothing but police vehicles and cycles were moving anywhere past the immediate vicinity, much less into the center of town near the Opera. He couldn't say how long the streets would be blocked for the demonstration, but in no event longer than a couple of hours. Two of our party elected to try their luck with an RER train to the Opera (during strikes, some operate driverless during rush hour), but this being Europe I had visions of wrestling my bags back down & up stairs due to lack of disabled access. Sorry, but I didn't beat BC only to lie in a crumpled heap in a subway station with a busted hip, or worse. I already fell a week and a half ago, and that was bad enough. Besides, we didn't want to give up our place in the cab line. About half an hour later, there was a parade of blue police vans...and then taxis began lining up again. We got stuck in lousy traffic--but we made it to the hotel. But our friends met us at the reception desk and cheerfully informed us that the RER at both ends had escalators, and the Rue Auber station was a block and a half from the hotel. And it was only five euros each. Oh, well.
Asked the concierge about a doctor. He said I had two choices, the one on call (150 euros plus the cost of medicines) or a trip to the clinic on Coumartin--which would have meant killing the rest of the day at the ER all for a lousy elbow scrape. Then he said there was an Anglophone pharmacist right around the corner who could tell me what I needed to do. I set off for my little stroll. Well, lo & behold, even though there was no antibiotic ointment out on the shelves, he took one look at it and told me I was caring for it all wrong---I was over-protecting it so it couldn't breathe and scab over. He told me not to use the Tegaderm or any of the non-stick water-resistant dressings.....and came up with a tube of Aureomycin ointment. Pharmacists here have discretion to dispense non-OTC meds without a prescription as long as there's some urgency and the stuff can't be abused. He instructed me to spray it with the French equivalent of Bactine, pat it dry with a sterile pad, apply the Aureomycin ointment followed by a scab-promoting OTC one, and then apply another sterile pad and tape it down only at the top and bottom so that air could circulate. Not looking forward to turning over in bed tonight, but maybe I can remember to elevate my elbow off the sheets when I do.
Falling asleep right now--about to enjoy a decaf espresso lungo (the hotel is providing the Nespresso machine for free but charging for capsules, so I supplemented the stash I brought with a couple of "sleeves" of 10 I just stopped in to buy at the Nespresso boutique around the corner--and got my freebie cappuccino in the basement). I also got some "sleep-promoting" herbal tea capsules for the machine at the drugstore--no valerian or anything that would act estrogenic, the pharmacist assured me. Also got some melatonin OTC (though the Biotin they were selling had all sorts of other junk in it and was an expensive proprietary blend). When I dry-coughed a little from the stress, the pharmacist asked if I have asthma and use an inhaler. I said yes--but aren't they Rx-only now in the EU? He replied, "yes, but I don't want you getting an asthma attack and having to go to the hospital." So he sold me a Ventolin HFA inhaler for 5 euros---which on my Medicare Part D is $18 and on Gordy's crappy insurance (almost no drug coverage) is $38. So I'll have one in reserve for when I get home--Gordy is doubtless plowing through my three in the medicine cabinet, as yesterday he caught yet another crummy chest cold (right after taking our cat Happy to the vet for a tooth-root scraping). At least it's not strep.
I had a lovely dinner at Cafe de la Paix in the hotel--and though I took some food-porn shots (but ate dessert before realizing I hadn't snapped a pic of it) I'm too tired to upload them from my phone. Been a helluva long day. Gonna sleep in--breakfast buffet isn't included in the room rate (and it's staggeringly pricy either delivered or if I go down there)--so breakfast will be Nespresso and cookies, leaving room for a good lunch & dinner with my friends. I promise photos tomorrow!
PS--is anyone else so effin' tired of this stupid Auto-Correct? It keeps changing effin' to "elfin," Omron to "Moron" and Keflex to "Reflex."
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Iris, I hope the PT guy can make you feel better! You had been doing so well.
Molly, I agree with Theresa about the stress from the diagnosis and treatment causing memory problems. I didn't have chemotherapy, and even before I started hormonal treatment, I noticed memory problems. I'd forget basic things - open the fridge and realize I'd completely forgotten to buy food. One day when I was on hold (probably with the insurance company), I freaked out because I couldn't find my cell phone, you know the one I was on hold on? The one I had in my hand? Talk about losing it!
Hugs to everyone, and welcome to the new folks! I'm way behind, I've been so busy I fell asleep in front my my computer last night. Thank goodness the weekend is almost here.
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Molly and Cubie - yeah, I'm 51, and was still menstruating, and I've done the cell phone thing before chemo. I constantly spend long spans of time searching for sunglasses that are on my head. I haven't forgotten to order food, but I will open the fridge and stare at it blankly as I had promptly forgotten what I went for. I call it Old Timer's Disease (I like CRS disease better - I'll have to remember that ... um, if I can).
C1D1 (course 1, day 1) in da books! The chemo ninja's are stretching and prepping for their assault. Lenny is doomed.
And I got that big sale I hoped would come in today, so I'm doing the happy dance (while I can). Feeling good but a little weird - kind of tired/foggish. Most likely because I'm tired - I didn't sleep worth crap last night. Happy Happy
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Having a crazy town kind of day. Recovering well from recent reconstructive surgery but still have annoying cough. Chest CT sched for next Wed (4/6) so I'm just waiting impatiently for those results!
And the coughing doesn't help post-op pain either
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(((Bekah)))
And Iris!!! So sorry about back pain today. Hope it's better tomorrow!
CJSharma- well done getting through day 1 of kicking Lenny to the curb!
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(((((HUGS))))) to everyone!!!!! I Have learned that in life there are always cycles of good, positive times and then sad, draining times. Luckily the pendulum does eventually swing in the opposite direction. Right now my pendulum is on the up swing and I hope that those having a hard time right now will soon be joining the up swing.
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My Crazy town story today is that I woke up at 4AM (I'm usually up by 5 so early but not too early) feeling pretty good. I was shocked that I felt pretty good, and managed to talk myself into a stomach ache. I'm up and fine now, but goodness...
I'll repeat the {{{{{{HUGS}}}}} and positive vibes to everyone.
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thanks for the thoughts, heading to my pt guy shortly
Not as much pain this morning, figured out that I over did stuff this week. Plan on talking to pal and still thinking of calling spine guy for Monday
Gads this is hard
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CJ, what a pretty profile pic! Glad you are a bit better, proud. I felt so lousy this morning I toyed with the idea of taking leave from work. Problem is I would end up doing too much at home anyway. Might as well not waste any leave time
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Good evening, crazies! Here is a view from our front stoop late this afternoon. In an hour or so, I nodded to a few strangers, said hi to our upstairs neighbors, chatted for a few minutes with the 7-month-old who lives a few doors down (and his loving parents), saw at a distance one of DS's former preschool teachers doing her afternoon fast-walk around the park. When we moved here 16 years ago, the top-of-the-line stroller was about $250. Now the $900+ models are de rigueur. (For the record, I paid under $100 for ours.).
And we could see the World Trade Center from the park across the street....
Anyway, it was one of those sun-kissed afternoons where everything seemed a little gilded and not quite real. Breast cancer, lymphedema, the looming MO visit next week, the ongoing Herceptin infusions all receded, and for a while I sat outside and pretended to read and basked in the sun like a cat. Sometimes it's fine to put off 'til tomorrow some of the worries and obligations. For a little while, anyway. Wishing a good, pain-and-anxiety-free evening to all!
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Nice, Rainny! It's the cobbling together of these shining, iridescent moments that results in a good life once again. 💗🎈💗💫💫💫🙏🏼
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Oh, how my feet & legs ache--but in a good way: I finally hit >10K steps (12K, to be exact) here in Paris. (Long walk to the elevator, plus exploring and shopping today pushed me over the top.
I promised some food porn last night, so here we go:
Veuve Cliquot Brut Rose, grissini and two kinds of taramosalata, at Cafe de La Paix in my hotel (Intercontinental Paris LeGrand):
Next, Fines Clairs oysters:
Main course--grilled filet of daurade with pommes purees, eggplant-stuffed pepper and currant-beet reduction, with a lass of Savennieres:
sorry it isn't as pretty as it could be, but I got a few bites in before I remembered to take a pic. Unfortunately, I finished dessert without photographing it. It was the hotel's specialty "Opera Classique" (tribute to the Opera Garner across the street): dark chocolate terrine layered with chocolate crisp, topped with mocha cream.
Slept late because I didn't feel like going down to breakfast if it wasn't included; and I have some cookies and Nespresso in the room anyway. The oysters didn't quite agree with me, so it was back to the pharmacy again. From there I decided to explore, and stumbled across a restaurant I'd always wanted to try, Bistro Volnay. Sadly, I was too heavily into the food (and the facts that I was the only tourist in there and nobody else seemed to be Instagramming their meals) to remember to photograph it. Here's the play-by-play: amuse bouche of butternut squash veloute with horseradish foam; entree (what we call an appetizer) of warm terrine of pied de cochon and sweetbreads with herb and green-apple salad; a glass of the bistro's namesake Volnay (a red from Burgundy's Cotes de Beaune), and free-range chicken (breast and thigh) with a kasha-root veggie pilaf and artichoke hearts. Too full for dessert and knowing I had all the coffee I could drink waiting for me back in my room, I went back to the hotel. Napped, and decided to explore some more.
Across the street was an artisanal chocolatier, where I bought a few bonbons and even 78% dark chocolate--sugar-free! Off I went to Galeries Lafayette, in search of my usual French souvenirs of fountain pens & notebooks. Usually, there has always been a plethora of fun pens priced somewhere between the four-buck "beginner" pens and the serious stuff (Parker & Wateman--both French now--MontBlanc, Caran d'Ache, etc.). This time I found a few 22-euro acrylic-and-brass pens with steel nibs--and they were on sale for 20 euro each. Got a few little Clairefontaine pocket journals and a couple tiny tins of foie gras (legal to bring into the US). Went to Printemps next in search of more pens, but no luck. Seems in years past my pen-hunting expeditions coincided with "rentree des classes" (back-to-school), which sales were geared to older kids & college students and had a wider variety of mid-priced pens. Was looking for a scarf or two, but not at those prices (and the ones the street vendors had were all hokey "Souvenirs de Paris" schmattas). Drooling over all the macarons, but they won't keep till Sunday and I can get decent ones now in Chicago. Headed back to the hotel--an ducked into the Lindt store for an ice cream cone. You can get any flavor there as long as it's chocolate: white, milk, dark or caramel/sea salt. This being Paris, my single-scoop of dark chocolate came in a cone hand-dipped in dark chocolate, with a spoon stuck into it. (I've seen Parisians eat a cookie with a knife & fork). It was decadent, and filled me up well until dinner. (No hands free to shoot a pic, and I felt awkward asking a stranger to either snap one for me or hold everything so I could do so.
One of my travel buddies had never been here before, but went to see an old sweetheart who'd long since moved here from Manila. He called at 8 and I decided to give him a foodie's tour--so more in the next post (getting too sleepy to type any more).
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Sorry, what? Too busy licking computer screen to compose a coherent answer....
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Rain, I love the pic....would have loved to hang out with you today! And of course it goes without saying that I loved the Paris food porn....my son is in France right now, in Rennes, for a graduate school research project (and the school is paying his expenses. Life is tough). However, I was getting a bit worried because he wasn't staying in touch or posting on FB....so I messaged him. Response back in essence was: 'gosh mom, sorry but I forgot to send an email, because I was too busy eating'. :-) Yep,he gets the eating part from me. Wish he would remember to keep in touch when he is that far from home...
Molly and Proud and all of you: hope everyone is feeling better today than yesterday!
It was a long week but I am feeling a bit better today. Healthier and in a bit better head space. I hope to get some rest this weekend!
Hugs to all!
Octogirl
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Rainny, that photo is stirring in me a memory of DD and I making a senior year mother / daughter trip to NY. I am glad you had such a great time not being in CT. Sandy, you're making me hungry. You should write restaurant reviews.
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Sandy, I don't know what half those things are, but the ice cream cone sounds fantastic.
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Rainy, Beautiful thoughts and beautiful picture. I've always wanted to visit New York. Traveling feeds my soul.
Sandy, Thanks for the food porn. I visited Paris for the first time at the end of last year. I long to return.
Iris, Hope you get some relief soon.
Octo, LOL Your son eating his way through Paris! Sounds wonderful.
Spring break starts today for my sons. Middle son is on his way to Oahu as I type. DH is trying to get me to take youngest son on a trip this week. I'm a planner/organizer type... and am conflicted. I'd love to do something, but also know that my stamina and strength are very limited. (Sigh) It always feels off when one of my kids is away from the nest for a period of time. There are a lot of unpleasant family stuff going on around here lately. I think I will go curl up on a comfy couch with a book, chocolat chaud and a soft blanket.
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OK, as promised, more food porn. Last night I decided to give my friend (who'd spent the afternoon with an old flame at UNESCO HQ and had never been here before) a typical Paris food experience that wouldn't break the bank. So first, we went to the iconic Brasserie Lipp for some Alsatian bubbly, Beaujolais, and choucroute garnie "Lipp" (topped with a corned pork shank rather than a slab of ham). Too busy talking and eavesdropping on the table next to us (two skinny guys and a slender woman who demolished three plates of escargot, two platters of choucroute garnie, three pastries, two baskets of bread, a full bottle of really good Burgundy, three glasses of dessert wine and three snifters of Cognac) to remember to shoot photos. By contrast, we split an appetizer, main course and small carafe of wine and couldn't get close to finishing any of it except the appetizer (salmon roe & blini). I also pointed out Les Deux Magots and Cafe Flore across the street, which were the epicenter of the American expat and French existentialist literary community (Sartre, Gertrude Stein, Hemingway, Fitzgerald, Janet Flanner et al) in the '20s-50s.
He wanted dessert, but I decided we should do it a little bit differently. 46 years ago, the summer before Bob proposed to me he spent a semester studying in London & Paris. He stayed at a little fleabag hotel (now a three-star) on a side street in St. Germain on the Left Bank. Down the block was a little Breton creperie, Little Breizh--the proprietor and his wife ran the kitchen and front of house and their little kid was bussing tables. We went back, this time with Gordy, in 1995--and the little kid was running the place, with his own son bussing the tables. So I decided to take my friend there. Same owner as 20 yrs ago, only balding and gray--no son bussing tables, as the kid was doing some kind of financial career. Instead there were a couple of waitresses. Since we'd had more than enough wine earlier, we opted for the sweet soft cider made from the juice pressed from Breton apples, fermented just to the point of sparkle and no further, with no sugar added. Here's the cider (served in bowls, not glasses), with my pal Vic:
And here's the dessert, a buckwheat crepe (we split it) filled with sautéed apples, caramel and topped with Madagascar vanilla ice-cream (made in-house):
This afternoon, we're taking the hop-on/off bus tour (stopping at the Eiffel Tower, getting in as much sightseeing as we can before the rains hit tonight); and I'm thinking dinner either in Montmartre or down in Montparnasse. Early morning tomorrow, as our flight back to Chicago leaves at 9:45 am. Forecast back home is for wind and perhaps (ugh) a little snow. Then it's mani-pedi (my nails grew out way too fast), laundry, and off to the TX hill country Wed. with Bob.
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What an incredible trip ChiSandy! Looks like you are having the time of your life! Good for you! And as I'm total foodie myself, I am drooling over those photos and I'm third day after chemo!
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ChiSandy, I am enjoying every word of the story of your trip! Love the food porn. I'm sure I'll never make it to Paris, so I'm living vicariously through you.
Thanks so much,
Brenda E
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Love the cider pics and back story so much! Thanks Sandy....thinking of travel started my day off on the right foot...
Octogirl
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been years since I have been to Paris and it was actually a time when I did not appreciate that sort of food. Must just live vicariously through your pics
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Beatmom- just wanted to say welcome!
Sandy- stop. Haha. Just stop.
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I wanted to post over here and thank you all for sharing. For the past 2 days I've been trying to come to a decision about chemotherapy and I believe I've come to a decision, barring the results of 4 tests I've yet to take, additional PET, blood, bone and gynecological. Over the next 3 weeks these various tests are going to come and go and help shape or reshape my decision.
I'm cool with that. And I appreciate the wisdom and experiences of you all who came before and shared so freely in this forum. For the past few months I've only had input from the medical community and I just don't trust them. Getting input from fellow patients and survivors has brought back my confidence in my own decision making powers.
I even found Ms JackBirdie in some post talking about two of my faves: champagne and something else, I don't recall what. Probably a case of pre-chemo brain.
But thank you all so very much!
cb
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welcome cb, this are rough choices to make but hope some of us who have gone before can help you during this time
Keep on coming
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CB- Welcome! I propose a giant CRAZYTOWN toast to your arrival, though I know it is bittersweet.
🍾🍾🍾🍾🍾🍾🍾🍾🙏🏼
Yes, I love champagne. And I'm guessing the other thing was chocolate, or maybe some version of veggie porn or fresh-baked bread.
I am sure other crazies will join me "in your pocket" during these next several days of serious contemplation. It's the hardest part if the journey, I think, after the worst news of your life and before you commit to what you're going to do about it.
Pull up a comfy chair, have a nice hot chocolate with Ativan sprinkles, and nobody will bother you if you just want to sit and think quietly. If you need more privacy.......there's a treehouse.
🙏🏼
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CB,
I agree a toast is in order. Champagne and chocolate? Why not I'm already dizzy.
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Welcome, cb. Sounds like you have a good handle on what you're going to do, depending on test results. Being in planning mode and goal-directed takes some of the "crazy" out of this "town."
Big news is that today, for the second day in a row, I finally hit my 10,000 steps and then some (yesterday was 12,000+). Wandering aimlessly, shopping futilely, desperately seeking taxis and playing tourguide certainly helped.
Today, after some digestive issues (should have stuck with just a cookie & espresso for breakfast), my friend and I decided to take the OpenTour hop on-off bus. We rode it from the Opera, down through the Louvre to the Ile St. Louis (pointed out the Palais de Justice where my CLE course was two years ago) and on to the Left Bank along the quay past the Musee d'Orsay to the Assemblee Nationale, then back over the river and down the Champs Elysees to the Arc de Triomphe. Then into the Trocadero, and across the river again to circle the Eiffel Tower, past the Champ de Mars. Figured the west leg of the Eiffel was a good place to get off the bus, take some pix and get lunch. Surprisingly, the conductor had never come to collect our fare, so we essentially got half a tour for free.
In the distance, the Ecole Militaire and Tour Montparnasse.
It was really cold, though, and the lines to go up into the Tower were insanely long. So we strolled to a little cafe for quiche (salmon-leek), salad and champagne. Went into a pharmacy, but this time they were strict about not selling stuff OTC (so Gordy will have to make do with a single souvenir Ventolin inhaler). We walked back across to the right bank, and decided it was just too raw & windy to take a Seine cruise. We walked up Avenue George V, which was uphill and rainy--so we surrendered and hailed a cab back to the hotel.
Napped, packed most of my stuff, changed for dinner and went up to Montmartre (very hilly, whose streets are too narrow for the big double-decker bus tours) for dinner at a little organic restaurant-rotisserie called Jeanne B. Nothing fancy, but based on fresh meats, poultry, fish and produce. Most of the patrons were millennials, casually dressed. Evenly split between locals and "Lonely-Planet" or Rick Steves-style tourists (rather than the shore-excursion tour-bus set). Here's what we had.
This was the wine list:
We started with a split of Laurent Perrier brut. Yes, I know those are the wrong glasses, but not having to stock a bunch of different ones probably keeps overhead (and prices) down:
Next, a lobster-leek veloute made with coconut milk:
Main course was leg of lamb with herb salad and scalloped potato gratin, washed down with a St. Joseph (from between Beaujolais and the northern Rhone):
And for dessert, apple-pear almond tart:
Then it was back down the hill in the rain till we finally found a taxi back to the hotel. Alas, all good things must come to an end: we are out of here by 6:30 am for a 9:40 flight home. I will probably sack out on the plane, but gonna nap till the wake-up coffee & croissant arrive at 5:30. Bonne nuit, and will check back in here from home.
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hmmmm, looking good, enjoy my portion
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