For Older People with Sense
Comments
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Phyllis, so happy your biopsies came back as they did. It justifies your choice and is a huge relief that there is nothing there to grow more cancer. Hope you do get that drain out someday! Take it easy--cleaning is bad and builds up more fluid! Believe me, cleaning was the last thing I resumed! Eating is fine, though.
XOXO, Dragon
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Hi All,
I had my PET/CT on Friday and thank goodness had to babysit Monday and Tuesday to keep my mind busy.
I can't stand waiting to go to my onc to get the news to picked up the cd and report today. Bad news, the tumor in my parotid gland has gotten bigger plus the close by lymph nodes. They are also questioning "new-non-FDG avid opacifications in the left upper lobe" They are just saying to follow up but looking it up I found out it's my lung which sucks since I finally quit smoking 3 months ago. There is also something going on with my right femoral head but not sure if it is cancer or not. The biggest problem is my parotid gland getting bigger and worse while I've been on Herceptin and Aromacin. I meet with my onc tomorrow and will hopefully come up with a game plan. I am really glad I pushed to have this done a month sooner since no one believed me that the gland felt different. Keep me in your prayers and I'll let you know.
Marianne
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Marianne, prayers are going up for you gal and here is a big gentle (((HUG))) for you.
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Dang Marianne what a pain! Are they giving you any ideas as to what they might do? Prayers are coming your way and I'm sure hoping they get this sorted for you.
Girls I've checked all those places and more and no luck! I've even checked all the drawers in the kitchen thinking I may have put them in there........nope, but I did find a pair that I wore ten years ago! Unfortunately, the prescription is no where near strong enoug and I can't see with them...........there is another pair that I came across in the hunt but they are only bi-focals not the tri but I gues in a pinch they at least would be better than nothing. Oh I just remembered, I have a pair of prescription sun glasses that I keep in the car! I think I'll pack those.....they are a bit dark for inside but at least I would have clear vision as they are the same as the ones I'm wearing. Thanks all for suggestions! 4 and 1/2 days to go!!!
Love n hugs all. Chrissy
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Marianne, you're in my prayers, too. I hope your onc can give you some answers and a plan when you see him tomorrow.
Chrissy, your excitement is catching! I do what you did also--put things in a safe place which is unfortunately safe even from me, so I sympathize. Glasses drive me crazy anyhow. Don't need to wear them all the time for tv, driving, etc, but cannot read without them at all. Hopefully you'll be able to make do with the sunglasses and I know you'll be okay. Time's getting very short, girl, and you're on your way!
Kathy
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hi girls; i feel so discouraged with this whole thyroid thing.. but, they even have a website called "stop the thyroid madness" so, i know its crazy, fo many people... im trying one compounding pharmacy in miami, we'll see then..
i also found with my friend Mayas' help; a supplement that may be just enough to do what i need. no rx needed, and it only supports the exchange so, it can't hurt. i feel AWFUL taking the synthyroid, even in minut amounts, so when i get the new stuff, i can quit that. i think its' doing more harm thsn good. what craziness, and in such a bad time in my life...
it 's causing alot of "drama" with my son, also. Nana can;t do the babysitting she was planning to do, now that my GS is starting school.. here's hoping one of the meds will work. its' my oppurtunity to have the time i've wanted with my grandson. right now, not possible. My son said good luck, mom, i hope it works for you. i told him i felt awfully alone in this, and would love to find a little time with my son, and his kids; to kinda support me... he said he was WAY too busy right now, but maybe after christmas things will ease uo, and we can see you.. they live 10 minutes away!!!
so, im tryijg to trick my mind into thinking my kids live in california, and i can;t see them now... don't know what else to do... i was " on my own" thru the bc; so, its' not a big surprise, but hurtful, nonthe less...
Marianne, im so sorry to here there's more trouble. i hope they come uo with a game plan. i always say we know our bodies better than these dors do! you were right on, with the paritoid gland!! bravo that yu stuck up to them, i hope they will take this that you're more aware of your body than they are...
i also went with a bmx< Phyllis, and they found loads of pre cancerous stuff.. again, we knew better. and i DID feel much relief in my decision, as you did.
Im praying for AJ, and Mellissa, and my friend in sCaro; and murs sister in Philly. they're gonna get the hurricane it looks like we're gonna miss by just a few miles. for sure, well get heavy rains, and wind.. but not head on. i hope it doesnt change your plans overly, chrissy. you may be doing things backwards from yur original plans. i hope not... AJ: will you get out of town? you still have time to go, girl... and the obx is suppossed too get directly hit. they're starting evacuations tommorrow. my prayers go with all the ladies i know in the path of Irene........3jays
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Thank you all for your prayers and support. I'm leaving soon for Hopkins for dr. appointment and treatment.
I'll fill you in later. Thank you again for all this support.
Marianne
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Good luck Marianne!
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Marianne, have they done a hormonal check on the parathyroid mass? Perhaps that's why the treatment isn't working if it's different than your original tumour?? Don't you love all our 'doctoring'???
3jays, if it makes you feel any better, I'm not going to be taking care of my grandson when my DD returns to work on Sept 11th...sigh. She didn't even ask me, just got daycare. When I gently asked her she said she couldn't count on me to feel okay and I had problems holding Zach as he got heavier and wigglier. It wasn't a nasty conversation and I didn't cry, but it does make me SO sad!! While I was still working, it was the plan that we would take him 2 days a week. So very sad.
I am now going to be going for long-term-disability. Wish me luck everyone! Some of the specialists I'm to see aren't even until October anyway! Those I have seen have validated my disabilites so now I have to fight. I don't know if I have it in me....
I did tell my DD that if anyone asks her why I'm not babysitting to tell the truth. I warned her that I will be investigated if I go on LTD and they may get ahold of her. LTD is a big scam up here as I'm sure it is down there, so those of us who truly need it give up cause we have nothing left to fight with.
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((3jays))
Good news Phyllis! Sorry about the stupid condo board though!
ChrissyB, now that you're so close to your trip, I'm sure everyone is clucking and mother-henning and reminding you about keeping hydrated and your blood circulating during your flights. I read hints once from a FAA honcho, and he said because the air is so dry to use artificial tears eye drops and a saline nasal spray to keep your membranes lubricated. Also, take antibacterial wipes and wipe down the seat arms, seat belt clasps and tray table. In my experience that works well. (these days, I'm a big fan of antibacterial wipes or lotions and use them regularly everywhere when I go out shopping or towning....)
Today is ladies' library league - we fight local govt agency to keep our little library open. We meet, discuss books and everything else, eat each others' snacks, and generally have a good afternoon together. My turn to bring snacks and I think it's chocolate chip cookies.
Have been busy putting up garden produce. Freezing & canning veggies; drying herbs. I am about pickled out, but did make some dynamite relishes yesterday but it wore me out. People are getting pickles for Christmas this year I think. Hoping our fruit trees and berry bushes produce next year, even if it means "more work" for me...
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Phyllis, just don't be so keen to get out pulling weeds. I know it's been 5 weeks since your BMX, but the more you do that sort of work the longer the drains will be before they can come out. I had my first drain pulled at 3 days while still in hospital, and was lucky I didn't get a build up of fluid under the drain site. The second drain was not so good. It wouldn't stop, I can't remember the numbers now, but I THINK it got to 13 weeks, and the dammned thing had 'grown' in to my side. I had to have a general anaesthetic to have it pulled.
3jays, thinking of you I know what it's like with sons. Mine left the area 3 years ago, taking the g/children with him, and I haven't seen them for 3 years come Christmas. I really miss them all. If I don't ring no-one ever rings here. I have to watch Facebook to see how the children are doing. DIL wanted to borrow a very large sum of money from me, and I mean large ! I refused to hand over a sum as big as she wanted. They had to go take out a loan at a stupid amount of interest, but at least if they don't make payments they lose the house, so they somehow make payments, but I know if it'd been me they'd borrowed from I would never have got paid back, there would always have been a sob story at payment time. As it turned out I needed a lump of that cash to pay DH off when we divorced. If I'd not been able to do this I'd have had to sell up....and all because DIL wanted a bigger house. Sometimes I can just get myself into a knot if I think just how much I miss DS and children, it's like a bereavement. At the moment I have no way of driving so far....probably about 300 miles...with the state my back is in. What I would give for DS and g/children to walk thru my door. I KNOW they have been up here 3 times this year to see DILs parents, and have to pass my door, well 2 miles away, but they never call or even tell me they're in the area. I find out from FB when they get back !
October is coming up...well, in about 5 weeks. I have a few magazines on subscription, and the 1st October one plopped thru' my door today...it was filled with 'PINK' I get so mad about this, all the stories of the 'cures' all the 'I have a clean bill of health now' I really don't think a lot of the women who get bc in this country are on the same planet as everyone else.
I have now got half of my dogs, that live outside with fleas....unbelievable... haven't had fleas for about 8/9 years. I'm going round picking up dogs and rummaging around in their long fur for fleas. I ordered flea treatments 2 nights ago, they were delivered today, and what do ya know the pharmacy I'd ordered from sent me a big box of special diets. I wasn't in when the parcel was delivered, or I'd have known from its heaviness that it wasn't flea treatments . I went out hotfoot tonight to open my parcel and get the dogs all treated, and no treatments, just special diets !
Don't know what's next, mange last week, fleas this week...somebody doesn't like me and is sending me these plagues !! So far nothing in the house. I will go mad if I get them inside. Luckily they're easily dealt with, it's just the thought of something hopping about and biting my ankles that I don't like. And I only have fleas in one run of kennels, my second run is completely clear, but I shall be treating all dogs ( and cats ) as a precaution.I can really do without all the bending, but I can't leave it to G/son I NEED to know its done properly.
Hope the hurricane doesn't do too much damage. It's quite big news here, lots of pictures of where it's passing over at the moment. I shall be thinking of you all over the w/end. It is a big holiday w/end here, the last before Christmas. The children go back to school next week, and autumn will be here ! The roads are already filling up (Thursday night) lots of caravans around. Of course as it's just about the busiest w/end of the year the train drivers decide to go on a 2 day strike. Hey Ho . I shall be staying home all the w/end. I managed a trip to the hairdressers today, for a cut and colour. Doesn't look much different to me from when I do it myself !! And at the prices they charge I think I shall be going back to doing it myself again !! Just beginning to get myself ready to go for my back op. I THINK it could be coming up soon....just THINK !! I have a 5 hour assessment appointment on Sept 5th, and its usual to do the op within 6 weeks of this assessment. I might be wrong, but I have a feeling this time !! Its only 23 months I have waited.
Isabella.
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Isabella, I hope hope hope you get the back op soon. You need relief!
Phyllis, that's SUCH good news about the path report! Just keep resting and healing.
So on the subject of thank-you notes: When my daughter gave birth about 6 weeks ago I brought over a bunch of cooked food and put it in her freezer. I knew the ladies in her community would be sending in meals for a while but I also knew there would be "those days" after the meals were no longer coming but her energy was too low for cooking. Apparently yesterday was one of "those days". I got a call from her and she said my 3yr old granddaughter wanted to speak to me. She said, "Savta, thank you for the chicken. It was very very delicious". Then my other granddaughter (21 months old!) wanted to talk and in her own way also said "Thank you Savta". My daughter is teaching her kids properly! (Savta is Grandma in Hebrew)
So I saw my onc today. He was not at all pleased about the attitude of the BS who wrote me off (to say the least). He feels that the prophy mast is mostly a QOL issue but it should still be addressed. He also feels that a simpler recon than DIEP is a better idea. So next week I see the PS and we'll see what happens then.
Ct scan before that (Tues). Sigh. Scanxiety.
Leah
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Marianne, hope all went well with your appointment.
Chrissy, on the forgetting where you put things --- I am a charter member of that club. My daughter was just laughing at me tonight because she found the box of plastic food bags in the refrigerator! And then I buy something for a project and forget that I bought it or can't find it and then go out and buy it again!
Hope any of you on the East coast are safe and out of harm's way for the hurricane.
Leah, let us know how your PS appt goes.
I went to the PS today, and have developed a seroma on the right side. It doubled is size after I helped my kids pull weeds the other day. It is now too large to be absorbed by my body, so will have surgery on Wednesday to insert a new drain on that side. (Perhaps I should sent the bill to the association president!) As suspected the drain on the left is still draining too much to remove. Will be extending my leave for another week. They didn't do any expansion today, but he will do some more when he inserts the new drain.
Oh well, I guess it is 1 step forward, 2 steps backward this week. I will focus on the positive and try not to rush things until these stinkin' drains are out!
Phyllis
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Phyllis.................right in the path .........the shore house will get an almost direct hit........and things are looking real bad in Pa. too......................I guess we just wait and see........can't do much about it...........I expect a lot of damage at my shore house..........and I have an inground pool........and expensive investment, and it could get damaged too..........wow where is the Vodka.
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SOOO many of you in the way of the hurricane.. please be careful; and make sure you're as ready as you can be!!!
we got flashlights, extra "batterry fans" now, its' going by us; but we're ready in case of the next one...
i hope all works out all right Ducky...
Isabella; after my little conversation w/my DIL, you came right to mind.. you're right.. it IS like a bereavement. im being ounished cause my health isn't good. i watched this child 6 days a week at 6wks old till over 3! when i got b.c.. now, its we're too busy, but good luck take good care of yourself...
Leah, its' so nice that your daughter has her daughters calling you. when my kids were young, they mixed up "bubbie" and "zeida" up. my inlaws never said a word... My GS Fischer tells his friends this is Zeida(sp) he's my friend.. i cry when i think of that. ..
my friend had the bmx, and then diep.bmx was almost 4 hrs., diep was 6. thats' a LOT of time under. that may be why they think its' too much for you. I barely made 4 for my bmx, and they had trouble with my breathing. they said no recon for me...Im glad your gp is on your wavelength!!!
{{{{{{marianne..drs appt}}}}{{{ Phyllis, the funniest duh! moment ive had, i hung the phone uo, went to the freezer to get ice, and left the phome in the freezer...DUH!!! Do you have a weed eater? have one of the girls just cut them down, and be damned.. we've done that 2xs here, till a friend weeded for me. you'll have way too many problems with the drains, otherwise, and they really are a PIA!!!!............3jays
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Marybe - catching up on postings on this thread and saw yours re your tree dying. I'm so sorry. There was a report, all over the news this week about trees dying in central Ohio. The deaths seem to be caused by a new, supposedly environmentally safe, lawn herbicide called, Imprelis, made by Dupont, It seems to affect mostly Norway spruce and white pine. It probably has nothing to do with your tree, but I thought I'd mention it.
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Prayers for all in the path of Irene. Melissa is staying put so I guess we'll see how that goes! My DH is resurfacing our deck--we already did it with some stuff that didn't work so now he's to plan B, some kind of stripper and powerwash. None of this would be very interesting except that when he works he puts on these cute coveralls that he's had for about 30 years. I'm dreaming up some other "coverall" projects after this one is done!
Seeing my PCP on Monday to re-do my meds. My upper back has not adjusted to the MX yet and I keep having pain after I've been upright for about 4 hours. I have more sympathy than ever now for chronic pain patients--it grinds away at your energy and is very discouraging. Blessed are the sick...
Love to all,
Dragon
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Chrissy, how many hours? I see reunions and gatherings planned "in your honor"... Hope you have the best vacation ever!
Isabella, 3jays, Barbe, I know how hard it is not to see grandkids. My heart goes out to you.
Phyllis, Dragon, others - I hope you are feeling better, and getting better.
Leah, good luck with your scan Tuesday.
Marybe, how are you doing?
All the eastern seaboard folks, be safe and take care. Lots of good wishes!
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Hi all!!! I have just logged on and it's 10.30pm! I have had a very busy day but I can now say that I am packed (all except this here lap top) and ready to go!!!! I am now 56 hours from departure!
Hoping all the girls on the east coast are safe and well!!! This Hurricane is such a worry for all.
Love n hugs to all. Chrissy
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Wow - I can only imagine how excited you are. What's the first stop on your itinerary?
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Hauntie, first stop is Singapore and then London for a couple of days before I head to the USA and Philadelphia. I am now officially over the moon with excitement!!!!!!.......lol.
Lov en hugs. Chrissy
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{{Chrissy}} Can't wait to meet you!
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Leah, Good luck with your scans. Will be hoping for good news.
Chrissy, I'm about as excited as you are for your trip!
All of you in the path of the storm, I'm thinking about you and hoping for very minimal damage.
Lane
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Well friends I was so tired from babysitting yesterday that after I helped DH "batton down the hatches" for the storm I was pooped.
My appointment went as well as I thought it would. I'm extremely happy that my spine now only shows all healed areas instead of all cancer. Barbe great idea on the hormonal check of the parotid. I don't think it was ever done. My onc is meeting with Hopkins tumor board on Wednesday the 31st and will call me to let me know their opinion. We discussed it and he said there are basically three options - surgery, radiation, chemo. They are supposed to be #1 with ear, nose and throat issues so they better come up with something I'll agree with.
I was scheduled for another Endoscopy on the 2nd but am going to cancel that since it was really just to see how healed the ulcer is. I don't think it's worth it since it was optional to begin with and I need to concentrate on my BC.
I'm babysitting for my youngest granddaughter this afternoon so daughter and her dh can go to a wedding. I hope I'm home again before the rains hit. Good luck to all others on the east coast this weekend! Thank you all for your thoughts and prayers.
Marianne
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Wow! A couple days away from the boards and it takes me 20 minutes to catch up on this thread!!!
Marianne, Hopkins is a great place for treatment! My MO did her internal med fellowship there. She came here, practiced IM for a few years, then did a Hem/Onc fellowship and has been in oncology for about 5 years now. I think she is just tops!
3jays, I can't believe the pharma co was using acai berry as a filler in your synthroid! And I can't believe the FDA approves that! My sister had her thyroid removed (CA) in the mid 70's and was on synthroid for the rest of her life. It was very tricky getting the dosage right, but she felt good when it was proper. I recall that there was some issue with grapefruit and other citrus fruits that interferred with they synthroid uptake...might want to check that out.
To those of you having problems with your grown children -- I am just shocked...absolutely shocked. My kids live 2 and 2.5 hours away. While I don't see them every week, we do talk about once a week, text often, and keep up on Facebook. My DS and DD were both here for my surgery. Your kids should be ashamed of themselves. OTOH, perhaps it's their way of dealing with it. Perhaps they just are not equipped to deal emotionally with their moms having BC. And so they don't deal. They deny. I hope you have other support...SO's, BFF's, etc., to help you through this. I can't imagine trying to get through this without my friends and family.
Chrissy, I am beyond jealous of your travels! We are planning our vacation (October) and I simply cannot WAIT! Have a great time and safe travels!
Phyllis, can you use chemicals on your weeds? If so, spray them with RoundUp...so much easier than pulling them, especially in your condition!
To everyone on the east coast, my thoughts and prayers are with you. Stay safe!
Hugs to everyone!
Martha
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Ladies, I had a major emo day today. At. The. Grocery. Store!
I'm climing out of my hole from #5 of 6. Today was the first day since Monday that I've been out of the house.
I go out of the house looking 1 of 2 ways -- either I wear the wig and make-up and really try to hide how I look/look as healthy as possible, or if I'm too tired, I wear my "fight like a girl" t-shirt, a little make-up and pretty do-rag on my head. I've also developed the habit of not making eye contact with strangers.
The employees at my local grocery were super nice, not only just saying "hello" but also asking me additional questions about my shopping and making eye contact with me. By the time I got to the check out, I was just about in tears. Then I noticed that the customer behind me had brought her own eco-bags, and one was a huge, pink bag that said "Support BC Research" on the front. It just about did me in. I sat in the parking lot and cried in my car before I left.
Have any of you had similar experiences? Is it the fatigue? Are my emotions on a roller coaster because of the hormonal stuff related to the chemo? I'd be interested in hearing your stories about going emo unexpectedly!
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Marthah, I think the emotional side of things happens not just because of the treatments but because we are grieving for the loss of self and fear. We all go through it and even though I'm almost eight years down the road, I still get the crying jags on occassion although they a now becoming a rare occurrence.
You will be feeling super vulnerable at the moment and that is normal for where you are in treatment so allow yourself the freedom to cry if you need to as it is cleansing.
Love n hugs. Chrissy
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Marthah: i know what your talkin about. i think chrissy's dead on.. its been awhile since i finished chemo' but since then, every little thing throws me. i also, dress "down" most days right now. Feels like too much trouble most days!!! i'll be hoping you feel lighter soon.......3jays
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All ok here in Alexandria, Virginia. power was off 2 hours or so while I slept thru it all. I can see one big tree across the street that was uprooted, but no damage as it fell into the little dog park, not into the street. Still some rain, mild winds. I will have to get a " I survived Irene " shirt ....
Hugs, Nancy
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Martha, congrats, you're normal!!! We don't take the opportunity to cry and grieve enough over this crap. I was getting my first massage in ages yesterday and I cried. I just felt SO sorry for myself!! I rarely have pity parties but I friggin' deserve one every once in a while dammit!!!
FINALLY got a washer and dryer yesterday!! Haven't had one since we moved last October. Moving van cost us $1,000 more than expected, so there went my new laundry!! Am doing the third load now. My DH has been doing it sporadically at the coin op, but it needs a woman's touch. Got the new red Maytag TOP load. Has the LOW agitator. Front loads are just too low for me to bend. HUGE capacity. I'm over the moon with happiness!!! Oh my!
Had a bit of trouble letting DH install it. He was taking so long I went down. He checked the hose but it was leaking. I asked if he'd tightened them (seems like an obvious task) but he hadn't!!! That's the kind of things his brain tumours doesn't allow him to do....sigh. The obvious.
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