CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Sandy, I'm glad your nieces troubles weren't anymore serious than that, although it sucks to have anemia and GERD that young. I've got a coworker just a couple years older on PPIs, and her doctors are worried about her long term bone density. Seems we're always between a rock and a hard place with these treatments. In your pocket for better blood test results tomorrow!
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ive always been able to get by with only occasional tums, sorry your neice has tummy issues and certainly at her age really sucks
Well today is followup with radiation doc, should be no big deal and certainly hope for on time or close to it. Finally got set up on the hospital web site, they post appointments there and do notifiy you in any other way, oh well, figured it out finally
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I've never used the online portal for our local hospital system. I do like the doctor's offices that text you your appointment reminders, though, because I can look back at the text if I forget when/where I'm supposed to be.
I saw the surgeon and after examining me, he doesn't see anything that concerns him. He says to talk to my MO at my regular appointment next week.
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ChiSandy: Definitely real ice cream with actual sprinkles. Though wouldn't dream of thinking askance about your hair treatment; even without having had chemo or the heavy anti-hormonals, I'm a bit touchy about my hair.
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I've been checking in regularly but haven't felt like posting. Just down... low energy, too.
Iris, I drank fruit smoothies while on chemo. I put some sherbet in it to boost the calories and make it silky smooth. I used apple juice instead of citrus to make it easier on my tummy. I would make a HUGE one and keep it with me until I finished it.
I had my follow up/6 month mammogram yesterday. Even with the scar and bruising from my recent excisional biopsy, it wasn't too bad. Best of all, for the first time in years, I don't need more tests! I finally passed my mammogram!
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Great news, Poppy!
I made my yearly mammo appt today for 8/30. I'm participating in a dense breast study - 3D mammo + US of both breasts. I wish it was tomorrow - just want to be done, and not worry for the next several weeks. I saw my MO earlier this week - everything ok; back in six months. When I asked if I'd be five or ten years on AIs, she just said - we'll have to see. No complaints, though. I'm grateful to be here and doing well.
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Just stopped by to say I love you all! Have a great weekend!
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Great news, Poppy!
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GMA ..love your photo .
Poppy ..wonderful news !
Penny ..my 3D and ultrasound is August 10th ..I'm already a wreck waiting !
Cubbie ..glad your doctor's visit went well !
Sandy ..hoping your blood test is back to normal.
Molly .Thinking of you and your family X
Ducky ..missing you !!!
Lori ..Hi ..
Iris ..hope you enjoyed your icecream..
Octo ..still off holidaying ?
Hi to everyone else ..x
My DGD turns 3 today ..she's having a little party at her house today , and coming to our house tomorrow for a big family party ..so have to get Hubby cooking today !!
My DGS had another IVIG infusion Monday ..please keep him in your prayers ..
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Here's a photo of my grand-daughter making cup cakes for her birthday party ...with the help of our 5 year old twin grand-daughters 😃
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they look adorable!
I asked my mo about my mamo as i got a reminder in the mail, seems no more mamos for me, i will be getting scans since i am stage 4 now
Sad
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Poppy, good job passing the mammo.
Lucy, the girls are adorable! Amazing how a 3-year-old makes 5-year-olds look SO grown up! Does your DGS have Guillain-Barre?
I'm not in Crazy-Town, more sad-town, because my mother's PC doc called me today with the results of her PET scan, which clearly shows some sort of Stage 4 cancer. They're not sure what the primary is, maybe lung or colon, but it's in lung, liver, bone, and nodes. She has moderate dementia, and the next step is to meet next week with a local MO. Her primary care doc is really good and gets the big picture, which is quality of life, comfort, and, to the extent possible, independence. She's not really symptomatic, has been in good health and the PET was done because someone saw something on an X-Ray. But her cognitive state has deteriorated considerably in the past two years, to the extent I'm not sure at all that she can make decisions about her health. We do have signed healthcare proxies, etc. She's in good hands, and we need to figure out the way forward.
So.
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(((rainnyc)). Hoping for the best for your mom going forward.
Lucy, the girls are adorable!
Blood test (CBC, ferritin) were this afternoon. Should have results in my portal by Mon. MO doesn’t seem too concerned—after finally getting copies of all my reports from the PCP going back to 2013, she scheduled my followup for the first week in Aug. (7 mos.).
Will have some rose with the Cantonese roast duck & veg. I brought home tonight.
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Lucy, those girlies are beautiful! Prayers for your GS.
Rainny, ((Hugs)) Glad you have a good team that understands why quality of life is so important for us.
Gma, Beautiful picture! I don't know how you are able to catch such wonderful shots of the birds.
Penny, My MO believes that there will be a test available soon that will determine whether a patient would benefit from 10 years on AIs. It could make a huge difference!
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Cheers to your Rose, ChiSandy. Good job diagnosing your niece. I had a nice jalapeño and cucumber bloody mary today, while waiting for this great little lunch spot to make a ahi tuna salad for me to bring home and share with J.T., my good man. Both of which were delicious, and both of which I hardly ever do. A treat to get thru a very hot day.
Lucy, you have got my prayers for your grandson, I guess i some how missed what happened to him, but he is too entirely tiny and young for it, bless your family too while you are all going through this. Those granddaughters look completely in control of the cupcake situation!
Well iris, at least no more mammos. I bet that taxol is making things better, and it is actually the best for crossing the blood brain barrier too. I think I had read when i was going through it, that it somehow made it more permeable. It's quite tough for many reasons.
I finally got a small box of pictures of my moms. My niece finally decided to send me some, she is the only one besides one brother that I will talk to, anymore, ever. in the box, also was a tangle of really junk jewelry, that I don't even recognize as being my moms, except for a couple of religious medals, and a pice of jewelry I bought her when I was in like the third grade! (A great and kind neighbor, who also had taken me to my first real library, took me shopping), but in the middle of the tangle, I spied my mothers' high school graduation ring! That I never even knew she had! My greedy sister must not have seen it, or I know she would have kept it,so I am.
but the coolest thing-- I found a picture of my grandmother, with a woman that can only be HER mother, the resemblance is astounding! My great Gma! First time I have ever lain eyes on her. and my mom looked so much like them,as do I. (just ask my sister, she yelled at me in a text that I was ugly, just like mom!!! but wait, she looks like me too... whatever.) I am sad though, because no one was really taking that many pictures of mom for the last twenty years. I did, and also a couple of film clips whenever I went back to visit her.. rambling now..
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rainny, so sorry about your mom, that is such a hard place to be
Spoke to my sister last night, or at least online
She thought i should come up to visit but i tried to explain it is hard to do that while i am at this point in treatment. I do not think she understands where,things are at for me. She seemed to think that the radiastion took care of the cancer. Hard to explain that after each chemo, there is a day or more of feeling way weak
I suggested she should come down to me which is something she has always been reluctant to do
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Lucy, the girls are gorgeous......so sweet...........hug..prayers for your GS
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Rainnyc, I don't know how I missed your post, I am so sorry to hear of your mom. I hope that whatever it is, that things go very gentle for her. Maybe it is a blessing that she may not understand exactly what is going on with her, but that, I know, doesn't make it any easier for you. It's a very tough thing to do, watching our parent(s) unwind... It's great that she is mostly in good health, to help her withstand whatever is to come..A big hug for you
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Not-so-hot news: my anemia is beginning to accelerate. In less than a month, Hgb down from 11.7 to 11.5, ferritin from 13 to 12, and though it's normal, my PCP isn't happy with the slow rate at which I'm making reticulocytes (which become red blood cells), though it's technically "normal," not just "normal-ish." On Monday, we will have the GI-imaging talk. Because my poop is normal and isn't dark (sorry about that), and my 'rhoids haven't bothered me or bled in over a year, he thinks we can wait on the repeat colonoscopy till 2021 when it's due. But we will probably need to do another upper-GI endoscopy (though my GERD is under control and I have no gastritis symptoms), and if it's normal, a capsule endoscopy to check for an intestinal AVM. He cautions that it's the pattern, not the absolute values, that concerns him—"you're not very anemic" and "the ferritin suggests blood loss" were his words. I faxed printouts of the results & my PCP's note to my MO. Will see what she says too.
He also asked about my "anemia history," which might give a clue. As a kid (even a couple of years into puberty) I was rail-thin and so pale that I had to wear long sleeves & jeans at the beach when all my friends (and everyone in my family except my dad) were happily slathering on the suntan oil. My mom kept giving me liquid iron (sort of pediatric Geritol), which she thought she could sneak into Pepsi to hide the taste—to this day I cannot abide Pepsi in any form. In my 40s & 50s, I often got rejected at blood drives because either my BP was too high or low, or my H&H (while statistically "normal") were too low. Haven't successfully donated since 2014. And in 1996, when I was in rehab recovering from OR/IF surgery for a tibial plateau/fibula fracture (got hit by a car crossing the street), my Hgb dipped into the single digits. But iron pills & a shot made a transfusion unnecessary.
Bob says that because my platelet count and WBC/RBC are perfectly normal, we probably don't have to think about bone marrow yet, but that I should ask about starting iron & C (which I did). But mention of reticulocytes scares the crap out of me. I think I will not deprive myself of a small glass of wine with dinner so long as it's very good wine. (Not gonna drink wine just because it's there, and I don't need the buzz). Bob also says that at our age, especially if we're asymptomatic, it makes no sense to completely give up the stuff that makes life worth living (or even bearable—if pain is awful and caused by inflammation, take an NSAID occasionally if it doesn't give you heartburn).
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Saw Despicable Me 3 last week. Was ok, the Minions weren't in it as much as I would have liked
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WHAT!!!! Not enough minions!!!! That's just not right!!!
Uh-oh, Chi. I do hope the iron & C work great to fix you right up. it shouldn't be bone marrow without having done chemo, should it? Hope you are alright. One doctor told my friend that one of the best things she could eat, to raise her iron (maybe it was a different kind of anemia), was to eat lots of raisins.. grapes and raisins aren't that far from each other, right? And not to far from grapes to wine?
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Yay QMC on good results!!
rain, hugs to you for your Mom. That is tough.
Tomboy, good to see you here. I think of you often. How cool that you found your Mom's ring.
Iris, definitely your sister should come to visit you!
and Sandy, hope that they get the anemia fixed and that it isn't more....
oh, and Lucy, the girls are adorable!!! Sending prayers for DGS as I do everyday...
and hugs and love to all of you! I know I have missed a lot. I am way behind....
yes, I was just playing, mostly, but I did have a moment or two of craziness this week. My knees are getting worse and I really, really want to have the replacement surgery ASAP...so was really looking forward to seeing doc Tuesday and to talking about scheduling it sooner rather than later, until his office called Friday am and said they had to reschedule my apt and first opening they had was in two weeks!,and oh yeah, I was seeing the PA. I don't mind seeing the PA for many things, but am worried it will delay the scheduling further, and I want to see the surgeon. I was so frustrated I started crying, which isn't like me. Actually, frustrated and in pain, dammit! Going to call Monday and explain my concern and see if I can get in sooner, and to see doc. If not, it might be back to drawing board on finding the right doc for the surgery...I've see another doc who I like, but he only does the surgery at our local community hospital, which does NOT have a good track record, and I've ruled that out. Given I will be there for a few days and that it is fairly complicated surgery, I really want it done at a 'big city' hospital by a doc who does a lot of them.... Sigh...I know that in the grand scheme of things this is not the biggest deal in the world, especially since I can't complain about the playing I've been doing and how my life is going more generally...but pain sucks. So I want to get rid of it and go back to ignorantly blissful play mode for a while.
Octogirl
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When my cousin in Hollywood, FL needed her knees replaced, she flew to Hospital for Special Surgery in NYC (she'd gone to Philadelphia first but they loosened). The flight back was rough because she'd forgotten her Norco, but she managed to text ahead for her husband to meet her at the gate with some. (If you are in a wheelchair, you can arrange to be met at the gate—I did that for my mom when she returned from DC to PBI and I was able to bring her own oxygen & wheelchair).
I'm surprised my cousin was allowed to fly home after only 2 wks in rehab for bilateral revision TKRs at HSS, because I was told to wait 90 days after my R one (we had a Viking River Cruise booked for exactly 3 months out). I hear you about the frustrations of dealing with a major teaching hospital that does many of these operations every day. I had to book six months out for my RTKR at Northwestern Memorial and my LTKR at Skokie (would have been a year for NWM by then).
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Yep Tomboy, not enough scenes with the Minios, even my hubby was a bit disappointed. He loves them!
Did have some positive things happen though lately. Hadn't heard from my stepbrother in a few years and I recently reconnected with him. Got good news from my older brother that his right knee is doing wonderful,so I was thrilled with that news
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gee, i had great success with surgery at columbia Presbyterian which is part of the same hospital as hss, they got me into surgery very fast, it actually shocked me. My nuerologist just had both her knees done at hss and when i saw her for my followup, she was healing and walking great.
Yeah, i seem to have several folks in my life who have grown used to me driving to see them, but this isna time i just cannot. My sister, well she always has been reluctant to travel and rarely goes more than local. Will see how it comes out
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Lucy, that picture looks like it is out of a magazine, one of the girls is even wearing a cupcake shirt!
Rainny, I am so sorry to hear about your mom. It must be such a shock.
Sandy, I was hoping the labs would lead to better news. I hope this is something simple to fix. It sounds like your tend to run a little on the anemic side to begin with from your history.
Octo, I hope they can get you scheduled sooner with the surgeon.
Waving hi to Tomboy, Ducky, M0mmy, Iris, and everyone else.
I've been doing some more decluttering this weekend. Three more boxes went out to charity donations, and the garbage can and recycling bin are full. Not much more I can do until the city empties the trash tomorrow.
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oh man, cubbies! I have been doing A LOT of unflattering (HAHA, edited to say de-cluttering, spell check turned it into that) too, because my corners and underneath are FILTHY! I do have a very small house, and he n I both collect odd things for our sculptures, and then I have books and boxes and who knows what! Magazines and just.... stuff! Everywhere. We are thinking about going ahead and putting on a new roof, and since we have an exposed high ceiling (there are the beautiful roof slats when you look up, only partially sheet rocked) then roof stuff will fall thru the tiniest cracks. so I have to get very busy boxing every thing, culling stuff. i put a load curbside, and it's almost gone in one day
, great! Since we don't have an air conditioner, and it feels hotter than they say it is, I am so beat, and can't do much before I have to try to find a cool place to sit down and rest. I messed up my back good, they say I have a fractured vertebra. It hurts if I try and do too much. This week I get to see a gastroenterologist for weird stomach stuff, Physical therapist for the back prob, and an ultrasound of my thyroid, to see if theres an adenoma. Because my calcium is getting higher each month, and they are trying to get to the bottom of that! Finally! I am also supposed to have scheduled a mammogram a couple weeks ago... Too many doctor appointments! Then off to onc, and endocrinologist depending on the results! And i just had started a volunteer position with my friend's church, inventorying donations, but it made my back worse, but they really need me...they are having a hard time.. and it does make me feel like I am helping in a small way. Hopefully, my back muscles will get stronger again. The last year my feet had been hurting really bad, I quit doing anything I didn't absolutely have to do,(including femara or tamoxifen) but got steroid shots in them in January, and they are much better! But taking a year off, really withered my muscles..0 -
Oh Tomboy, I am so sorry about your back and the lack of air conditioning! Text me if you need anything. Hi Cubbie!
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gee, I have the worst feet, they are painful if I walk much or heaven forbid wear the wrong pair of shoes. Been told it is arthritis but it does detate what i do. You had steroid shots in your feet? Wonder if i should look into that. Was it a foot doctor who suggested that for you...
Hanging out today tommorrow is my second chemo thing...
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It was a pain doctor i have been seeing at my cancer treatment place Iris, and If you want, I can try and find the report of it to try and find the name of the stuff he used. It really helped. The pain was gone pretty much all the way for the next few days, and has only been creeping in just a little, well controlled by other pain meds i take now. I was crippled, at least according to what I used to do. I did go on an 8 mile hike in the hills almost a month ago, and it didn't kill me! But boy was I sore for a week after. There were little-ish water falls there, blue butterflies, and cool shade! Glad to be able to do that! I was proud of being so strong and active my whole life, thought it would help me for when I got old, ha. I am gonna be 58 in september, I think
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