CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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She is a patient at Shriners' in Philly.....and has been to Boston Chicldren's Hospital, and E.I. Dupont in Delaware also a childrens's hospital....but most everything is done at CHOP...Children's Hospital of Phila....amazing hospital.......but Shriners plays a huge roll in her care too...thank God for good people
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Ducky ..I cried reading your post ..and yours too Molly ..someone would have to hold me back from wringing the doctors necks ..
I know the grief we are having over DGS now ..I feel angry at the whole world that something like this can happen to a little 4 year old ..he's just a little boy ..our little boy ..
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Cubbie ..with you for your doctor's appointment..
QMC ..hoping for B9 results for you !
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Molly/DuckyB: following the stories of Wyatt and Grayson with sympathy, and a tear or two (but don't tell them that)
SharonRose: a belated welcome to you. I'm sorry it took me so long--my only excuse is that I've only now recovered from my sleep deficit. But pull up a rocking chair on the porch of the CrazyTown Inn, or a hidden corner of our treehouse, whichever suits your fancy. The rocking chairs and swings are comfortable, the breezes cooling and the amount of company is no more or less than what you desire at the moment. Moods can vary moment by moment. And don't forget to get the expandable pockets! Keep us posted on how your meeting on the 25th goes? Please?
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Sandy, good to see everyone's being proactive about the anemia. Hopefully your wine-free period had paid off with better numbers.
Lucy, still praying for your grandson. Do the doctor's still not have a diagnosis? I can't imagine what his parents are going through.
Shriners is wonderful. I know some people whose daughter received orthopedic surgery through Shriners in Boston.. Cutting edge surgery back in the day, not even available in Chicago (our nearest major city) at the time. She is now married and a parent herself.
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duckyb, I wish we could sit and chat in person. I know we would hit it off. I remember taking the wheels off Wyatt's wheelchair to fit into my station wagon every day when I picked him up from daycare. The day we got an accessible van was a celebration. The judge who presided over our settlement set aside $$ for the van.
Lucy, I know your angry and grief stricken. I pray your DGS can overcome whatever is wrong.
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those stories of malpractice are truely terrible
Well first chemo infusion done, boy you guys made for a heavy bag but so welcome. Course the place was running an hour behind but it was the of day before holiday, But really not too bad, i was worried as i forgot my cell phone and was borrowing a cell from nurse so i could update my driving pal. But all worked out. Just way tired. They told me that since they gave me benadryl in my iv, i really should not drive or risk getting a dui, sure dont want that. Next treatment is the 12th
Rest till then
Thanks for the support
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Proud: one down, how many to go? (or would you rather not think about that just now?) But there's always a bed made up in the CrazyTown Inn for those who need the respite.
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i am not sure yet how many treatments
Nurse said that the doc, who i did not see yesterday,would let me know. I do know i see onc on the 12th and hope to get info then. This entire chemo thing really moved quickly
Nurse said the number of treatments will be determined by my response to the med
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Iris, glad to hear things went well. Hope it is too firecrackery noisy where you are and you can rest a bit.
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actually , woke up to sound of car alarm last night, not mine!
Discussion around town is if stuff will be rained out!
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How are you feeling today, Iris?
I got my quarterly labs drawn today, and had an appointment with my counselor. I got a call from the MO's nurse telling me my mammogram was normal. I was like, seriously? I told her I had an ultrasound, not a mammogram (and restrained myself from pointing out that there is no mammo left to gram in my case). Honestly.
Thinking of you, Queenie.
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Revealing Of The Results (for me) tomorrow at 11:45 am. Sublimating my panic into the reprise of my "Routing and Switching" class.
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cubbie, feeling ok today, thanks for asking, still waiting for hospital to give me time for next chemo
But think i did ok, mostly just tired
Did wake up with a sore in mouth but used biotine rinse and toothpaste
Also slathered vasaline over inside of mouth and it seems better, got to say not interested in food yesterday or today, did force myself to have befast
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I'm 3 pages behind and trying to catch up with everyone.
Waving hi 👋 and sending hugs for everyone 🤗!
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I'm 67 - today the male nurse asked if I was postmenopausal? To which I replied, thank you for the compliment!
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I agree, Marijen, take that as a compliment and run with it!
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What a great compliment, marijen!
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Marijen: Oh, [redacted], I'm only 50 and change and I'd take that as a compliment too.
Proud: already thinking of cooling, soothing, tasty, slidy things I might prepare for you in the kitchen of the CrazyTown Inn
Wenchie: waves hello, no matter how many pages you're behind, you're always welcome
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Geez, Marijen, I’d have tipped him!
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i agree with that, best birthday present is a complement on age
Well mouth sore is gone salt water rinse plus biotine toothpaste. Spoke to nurse yesterday and she said salt water plus baking soda is good. Still tired, you guys forgot to tell me that! Not hungry! Sort of have to remember to eat
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Iris, are you doing weekly Taxol? If so, there is a crash about 2-3 days in. I was hopped up on steroids for the first 24-48 hours. I also lost my appetite, as food tasted weird. Lemon in ice water worked when water tasted soapy. I also drank seltzer, with or without lemon. Watermelon was also good.
If the benadryl gets to you, see if your MO will let you try hydroxyzine instead. That didn't make me sleepy.
After a while on Taxol, I got used to it and pretty much ate what I wanted except in the first couple of days. Good luck to you!
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Iris, when I was on chemo nothing tasted good, but the right texture helped. I recommend mashed potatoes with gravy, and ice cream. Not the time to worry about calories. Ice cream almost always tastes good, or at least feels good going down. Sending hugs.
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Just popping in. Playing catch-up to pages missed while on vacation.
Gentle hugs to all in need and healing thoughts, especially all undergoing chemo and other treatments. Not sure if this would taste good while undergoing chemo or not, but applesauce with cinnamon/ginger and also mac-n-cheese are "go to" foods for me when not feeling good.
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Chemo: some years ago there seemed to be a spate of women who had breast cancer around where i lived; at one point I ran into one of the regular patrons (customers) of the library where I worked, as she was contemplating a display of Little Debbies. She looked sheepish, but I just said something to the effect of "Not gonna lecture you on the importance of eating nutritiously at a time like this. There comes a point in chemo where 'whatever tastes good' is what you eat."
So keep us posted, Proud, and none of us will notice when you end up in front of the snack cakes.
(My biopsy was NED. All that sublimation into accounting for nothing! Harrrumph.)
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QMC - great news!!
Iris - I concur with the ice cream suggestion. Topped with fresh peaches, it was my Taxol go to
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I definitely recommend ice cream if you can handle it. When I was having chemo, my sweet tooth went away (It's back). The thought of ice cream made me a little nauseous at the time, but I absolutely craved cottage cheese.
Go with whatever you think might make you happy. Even a small dose of happiness is worth shooting for.
GMC: hooray!!! (throws joyous handfuls of brightly-colored Ativan sprinkles into the air)
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great to have a reason to eat ice cream!
Did just eat zucchini spiral noodles in sesame sauce........most i have eaten all week, tasted dandy
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Great news, Queenie!
I had a consult with a plastic surgeon today. After meeting with the doctor, a nurse was supposed to come back to get me for photos and then send me to checkout. They completely forgot me. I sat there in the exam room (you would think they would have needed it for someone else) for a half hour before before I finally just opened the door and went out to the nurses station to ask if someone could help me. Otherwise, I was just going to leave. I'd already been there a hour even before being forgotten, since they were behind.
Tomorrow I see the surgeon for follow up on my ultrasound. They've already warned me that he is the doctor on call this week, so expect him to be late. I just hope they don't forget me!
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Yay, QMC! I vote for ice cream with real sprinkles (no Ativan necessary).
Back muscle pull is resolving rapidly. Might ditch the morning Baclofen and see what happens. And haven't had one of those weird quasi-syncopal episodes in quite a while. Going for my repeat CBC tomorrow (needn't be fasting), between voice lesson and long-overdue hair appt.: trim, root touch-up, Brazilian Blowout (don't judge—I know about the aldehydes that form, but the salon has a dedicated corner for it with a powerful vent system; the lower-fume keratin tx requires I keep my hair dry and not clip it up or tie it back for 72 hours afterward, then shampoo it. No sulfates or NaCl allowed, ever. The Braz. Blowout lets me shampoo the next day, and we're due for a few rainy days beginning late tonight. I also tend to sweat from my scalp & neck, and sweat has salt; so the treatment doesn't give me truly stick-straight hair unless I follow my wash-&-dry with a flatiron or tourmaline ion heat brush. Yeah, I'm vain about my long hair, while I still have it—we don't know if letrozole will accelerate thinning, as it does for many patients).
Hoping the CBC shows improvement of the hemoglobin, though it probably won't re: the ferritin; and that the plan going forward is avoid NSAIDs, cut way back on wine, stay on the PPI, and take iron & C. Also hoping a repeat upper GI endoscopy, &/or capsule endoscopy, won't be necessary. There's an outside chance that they might be able to do some sort of newer procedure to treat the hiatal hernia, to prevent “acid brash" when recumbent. If that works, I might be able to ditch PPIs or even H2 blockers and get by on TUMS (instead of those expensive Citracal “petites," as in "sized for only a small horse").
But alas, the "family heirloom" has been passed along. My sister, who is definitely not a night owl, called me at midnight July 5. My 22-year old niece, who gets panic attacks, reported chest pain and dizziness, and my sister wanted her to talk with me to see if I could calm her down without needing to go to the ER. I talked to my niece, and realized that because she sounded calm and mentioned her chest pain was “mild" and “central," with a normal heart rate, I'd better put Bob on the line. He said it could be nothing, but best to get to the ER right away to rule out a heart attack (heart attacks can happen in young women if there is an aortic dissection) and perhaps get I.V. hydration. So my niece then called me from the ER. She said they drew blood and left the catheter in just in case she needed fluids, and did an EKG which was normal. I asked her if she was anemic, and she said “Big time." I told her that the last time I had pain like that it turned out to be gallstones (she's 20 years too young, and slim, for that) and esophagitis, and that they'd probably both increase her iron and put her on a PPI. Sure enough, she texted me back, saying that was the diagnosis—and she was released with advice to take Slo-Fe & vitamin C, and a prescription for Dexilant. So that makes three generations with anemia and GERD—my sister eats TUMS like they were Smartees and my mom used to take Titralac. (And Gordy put himself on Prevacid, with Bob's blessing).
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