CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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I am offering a picture I took of a Lotus Flower (Tahiti) to all that are facing challenging times. Love, Di
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Di, that is a beautiful flower, thanks for sharing
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queenie, in my basket I would like some prosecco, thank you my frien
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hmmmm just a nice bottle of bully is always good
We'll one more doc visit down
As I have gotten to know this guy, I find him good at answering questions, i just need to ask, seems that for my thing they put you through a boat load of testing before they determine if you area a candidatefin, with me as brain surgery and back surgery still give me the creeps. He agrees that I should be getting dif opinions on my surgery
1 appt down, 2 new tests planned
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Iris, still in your pocket. Hope it’s nothing that spinal stenosis or minimally invasive disc surgery can’t fix.
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sandy, it seems to be a bit more complicated
Got water on the brain , tumor on my spine, the ddd is the easy part but good thing is this area has great docs and it is all about putting together the best team
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Hey, everybody, I just finished getting caught up on everything since May. Whew! It made me tired, all the stuff going on. Welcome to the new residents of CT. My friend who was diagnosed back on May 30th, with bile duct cancer, passed away Thursday. Before she got bad, we hung out, then talked a lot on the phone. She told me she was at peace with it all. One of the nicest people I have ever known.
I was supposed to go back in July sometime for another look at my kidneys, but when I called to find out when my appointment was, they told me my appointment wasn't until October. I asked his nurse to ask him if he was sure, because he had told me three months. Apparently, he decided six months is okay. Anyway, I have my regular six month scan in September, so that I will get a heads up on it, then. He told me that one kidney is for sure a tiny complex cyst, and the thingie on the other one is just too small to even categorize. Also, apparently, they were both there three years ago, but only the last scan showed one got an infinitesimal bit bigger and the other smaller. If that took three years, I guess six months won't hurt. He is the expert, and my MO sent me to him. Of course, I am imagining all sorts of pains and discomforts. Or am I? I feel achy all over, just as I always have, get occasional twinges in my lower back, and lower abdomen, which are probably due to having surgery in late April, where they did fat grafting and a tram flap/lower tummy revision. I guess you can still have discomfort four months later, can't you? I will be glad when this next round of scans is done.
In November, I go back to the PS, to see what's what with the boobies. I think the right one is fine and since it is the one that got radiation, that he should maybe just lift up the left one. Just can't seem to get it high enough. I was thinking of asking him to put it up near my neck, so when it drops, it will be just right. They are both smaller; he put in a smaller implant on the right. I am happy about that.
I love all the pictures y'all are posting. It's also nice to put faces with names. Yay for Beppy and Sandy being VIPs. Y'all really are.
Iris, they are putting you through it, huh?
Lisa
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Iris, hope they can safely shunt off that hydrocephalus and that the tumor on your spine is benign and removable.
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Oh, Iris, I was apparently typing while you were. I'm sorry to hear about what's going on.
Lisa
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Iris, you sure have a lot going on. Glad you have access to good care. Love I'm very sorry about your friend. That's so sad.
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wow, can you say docs can be Annoying? This nuerosurgeon feels my hydrocephyles is normal, and my back junk should be left Alone!
Apparently I am supposed to just live with the weakness in my legs and stuff. Did say the tumor would have lit up on the scan if cancer so guessing that is good. When he looked at me and said do you want a follow up I declined
Doing the dumb tests that his nuerologist ordered and will be seeing the other nuerosurgeon on Thursday.
How the heck can 2 dif surgeons give such dif Opinions? Guess he is not interested in my case
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Sounds like he didn't want anything to do with you.. What a jerk!!! I sometimes feel that as you get older they just don't think you are worth the trouble. I am so sick of that attitude... ON the OTHER hand - he might just actually believe he can't do anything for you.. which in that case, at least you don't have to deal with him anymore. But I wouldn't give up, I would see what the neurosurgeon has to say.. Sending you big hugs and hope things work out Iris.
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gma, he definitely is not wanting my case , and really glad I have this other surgeon guy to see on thursday, also glad I am taking a retired nursing pal with me
It would be Devine to have less of a surgery, I really was sort of hoping for a nonsurgical issue as the issue and actual hoped for ms
Pull out the ice cream, diet postponed
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Iris....still in your pocket.....and it is getting crowed in here.
Hugs,
Di
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hey, thanks for all my pocket pals, doctors are sure not my fav people right now
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Iris, did the neuro say your hydrocephalus was actually a “normal" thing, or did he call it “normal pressure hydrocephalus?" (aka NPH). The latter can mimic the symptoms of dementia or Parkinson's, and is easily treatable and fully reversible.
As to the spinal tumor, one more reminder that “benign" doesn't mean “harmless," but rather the binary opposite of “malignant." A benign tumor, depending on where it is and how big, can indeed be a bee-yotch. My MIL had one when she was in her mid-80s that was wrapped around not just her spine but also her kidneys and part of her bladder. Resecting it took the better part of a day. But she fully recovered.
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Hey all! Finally caught up....
Iris...{{{hugs}}}
Welcome to all the new faces, this is truly one of the best places to hang out!
Chi and Beppy....CONGRATS! You were VIPs long before now though!
Hi Tomboy....hoping to see that hair!
Shorfi, Sula, lcm and Cubbie....nice to see you posting!
Hi Octo, Molly, QMC, Poppy, Gma, Ducky....👋🏻👋🏻👋🏻👋🏻👋🏻👋🏻
Val....how scary, I hope you are resting and healing.
Long story short: I am doing well.
On letrozole and zometa....had a similar incident to Sandy with non-compliant veins...nurse stated I should consider a different osteoporosis treatment....met with a psych...no more visits necessary, my breakdown was more of a breakthrough and positive things are happening again. Still worried about the other shoe, but I have all of you to help me with that!I am sorry for missing folks....my memory is on the upswing now that the fog has lifted, so I should get better at acknowledging you all
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sandy, today's guy said it was normal pressure hydro which I guess is what the docs years ago but not sure what the other nuerosurgeon thinks, today's guy said i did not walk like folks with hydro do
I do not get this so hoping my Thursday guy is more clear and so glad my pal is coming with me
The tumor thing, I want a better answer, have not called my onco for her thoughts as i keep waiting for the next doc visit
Want to try the gym as pals are asking where I am and it is a mental thing for me, i don't do drugs but do gym!
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Iris, add me to your pocket....(((IRIS))). Glad you have your pal to go with you for the next doc visit.
You know, I think CrazyTown needs a tailor with all the pocket expansions going on. Just saying.
Robin, good to see you back and to know that you are doing well!
Today was a big day for me for a little reason. I got a haircut (just a trim, really) for the first time since my hair grew back post chemo. Hadn't seen my hairdresser in over a year. She was amazed at how different the new hair is, but she shares my gut feeling that it will eventually become more like it was. In the meantime, it was a nice but bittersweet half hour or so sitting in her chair, chatting with her about whatever was in the news and our small town gossip, and feeling like 'oh yeah, this feels like my old life...'
Hugs to all;
Octogirl
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Mazel tov on needing a haircut, Octo! I remember it was not so long ago that you worried about your Taxotere hair loss possibly being permanent. Ask Sloan for tips on using styling products to amp up the volume and give it some shape.
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Lots of curls....
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Octo....those are really nice curls!
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WOW, Octo! Your hair looks terrific!
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Robin, your photo is beautiful!! Octogirl, I love your hair. Iris, add me to your pocket as well. I fell deep, head first into the rabbit hole today for no reason. Then I got a sweet text from Beppy and I felt better. Still need some tea and porch swing time but overall better.
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isn't interesting how simple contact of a frieND makes us feel Better?
Thanks for the expanding pocket party, tommorrow will be here soon
Got my bag set for gym and gonna try it, may not last long and likely be exhausted after but gotta try
When all this crud started one of the first docs I saw said I would be much worse cept I was i good shape to start, now that still makes laugh as i have about 30 more pounds than I should have
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More test results today:
My TSH is normal, so we can't blame my weight on my thyroid. MRSA swab negative. But we got the lipid profile back.....ugh. Total cholesterol (gulp) 305, HDL plummeted to 70 (still good, but not the 95 it was pre-letrozole), LDL >200 (higher than it's ever been). VLDL and triglycerides normal--in fact, my tris are lower than before. My total-to-HDL ratio is 4.4--not wonderful but not a red flag (<5 is "desirable")....except it used to be around 3. My primary says that lipid pattern is characteristic with letrozole, more so than with the other two AIs. But because letrozole is the most powerful at lowering estradiol and my other side effects are tolerable (and there is still little research comparing letrozole against other AIs or placebo in early-stage bc patients who've never had tamoxifen, nor those with family CVD history, he advises against asking my MO to switch me to another AI or tamoxifen--the latter of which increases stroke or coronary thromboembolic, as opposed to broken -plaque or atherosclerotic, MI).
Bob's response was "told you--my Lipitor bottle's on the dining room table, help yourself." But my primary says to hold off until I'm done with my surgeries, and then discuss whether to try Crestor or generic atorvastatin, and at lower or intermittent-dose levels. Given that my dad and three of four grandparents had M.I. histories (one died of her second one at about my age, my dad had his first two at 50 before an arrhythmia killed him at 72, a maternal uncle died of his first one at 49) and my mom's CHF was primarily but might not have been caused by only her smoking-induced COPD, and that I am now over 65 and on an AI, my CV risk has gone from low to moderate. He points out that even though ER+ bc is never really "cured," most women with it are killed by heart disease many years down the line, before either recurrence or death from mets. More ER+ early-stage women die of age-related heart attack or stroke than of breast cancer. So doing nothing is not an option.
I asked about whether I need to change my diet, but he said that it is no longer true that eating cholesterol--or even saturated fat--raises LDL. My dyslipidemia is more a function of obesity, letrozole and especially heredity (neither of my parents managed to get their total cholesterol down below 250, even with meds--though my mom had extremely high HDL levels; had she never smoked she might still be with us). I asked what if a statin raises my glucose and he said that it would likely do so, but not high enough to warrant adding metformin. (New guidelines in patients with well-controlled BP and total chol/HDL ratio <5 are not to treat for fasting glucose levels <150). And my familial hyperlipidemia isn't high enough to warrant the new injectable biologics--which run >$14K/yr wholesale and aren't covered by Part D carriers--unless statins don't bring my LDL levels down to normal.
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oh dear sandy, your cholesterol sounds like mine, without statin I hit 280 at one time, have tried most of them and settled on limit or although I am sure that is why I have been having leg cramps
Hope you can get a haNile on that dang stuff, just added fish oil to my little pill baggie
Turns out the weekend is going to rainy with many off shore storms, least I am not missing a good beach weekend
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Daca,
So happy for you!!!! Scans and all the rest of the stuff is so nervous making..hope it's clear sailing all the way for you
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Octo,
the hair is looking beautiful!!!! Let me know when you get up this way...and we'll have coffee time!
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Ducky,
thinking of you..going away to school is such a big deal.. he's lucky to have such a supportive grandma on his team. I totally get the need to have something to worry about.
Beppy congrats on being a VIP and love to you.
Proud,
thinking of you and it sounds like you're putting together a great team to deal with all of this
Poppy,
glad the vacay was a hit..when you mentioned your pool turned green all I could think of was the Brazil olympics..at least you didn't have any couches floating in the water!
Tomboy,
shout out to you!
Things have been nuts around here.My MO ordered xrays for my back piriformis issue because I asked for some sort of test since any pain makes me crazy..they did xrays of the whole lumbar area, hips, leg etc etc and everything was a-ok..and then it stopped hurting..go figure.
I went to UCSF to meet with the surgeon who will do my ooph..and had a loooooong drive back got stuck in an insane traffic jam and of course everything in my back and butt started hurting again...partly from the awful sitting in traffic..partly from nerves about the further surgery. Soooo..once more pain and then worrying about the pain meaning something and then once I relax it stops...plus back issues have been a problem for me since I was 15.
I'm really freaking out over here because of approaching my 2 yr cancerversary in 2 wks. I imagine every ache or pain means something....if I relax or take an advil it all goes away.
I have to have that magic wand vajayjay test done before my surgery...not looking forward to THAT! and then of course they do sectioning of the ovary to see if there is any micro malignancy...which is something I never heard about before..but I've discovered it;s why if you're doing this as a preventative measure you must do it at a teaching or specialty hospital because other hospitals don't do the sectioning...so another thing to sweat out results of.
We've been busy with work..they just got a director for the TV pilot we just finished...so we've had notes..meetings etc on that....the restaurant up here has gotten all their permits signed off on. I recommended a pastry chef and they tested her and hired her. they got a second pastry chef and now just need the regular chef and bus and wait staff. They signed me to another 9 month contract to keep designing dishes for them.
Spent the afternoon with an elderly friend up here who is "checking out"...too much pain, lousy quality of life..spreading neuropathy ...so he is in hospice now and decided to stop eating...we had a great time as he's part of our usual coffee group he was in great spirits but all he talked about this afternoon was food! ...this from a guy on a fentanyl patch who's not eating!
Anyway....just checking in reading what everyone is up to.....I do have some food porn...gluten free queen of sheba cake..and yes it's supposed to have those cracks
Deep dark truffle bouchons #glutenfree
pork, veal and chicken terrine with prunes in cognac
apricot frangipane tart gluten free and contains less than 1/3 cup of sugar
so...back to more reading and catching up...just typing and reading here seems to calm me down!
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