The Hermit Club
Comments
-
Hi hermits: What a day! People in and out of my house today (pest control company first thing in the am, cleaning company in the PM), dexa scan after lunch and work calls all the way in between. But it was a lovely day here today, up to 75 which is really warm for March where I live. But I will take it! My weeping cherry in the back yard is about to bloom, as are all the other fruit trees where I live.
Cami- I have to be on call if anything REALLY goes wrong this weekend. Rare that I have to do this. We have a couple check in calls for 30 minutes between tomorrow to sunday, but otherwise I will be doing my thang the rest of the time with errands, house work, yard work and oh yes, sleep. The guy running the system conversion today says "this is the first time I am doing this!" Sort of like a surgeon saying "you are my first surgery ever!" My client is a nervous one anyways, wish us luck.
Had my dexa scan today, and going to fill my script for Arimidex this weekend. I am going to start it next weekend, when I don't have to work and in case there are any SE's to start.
I made an apt for my 6 month mammo post radiation at the same place I had the Dexa scan today and told her it was for post breast cancer treatment check up. She said "you must be doing well, you look really great." Kind of nice to hear. My ladies who clean my house made the same comment too. Maybe I am recovering?
I just want you to all know I think you are all brave with everything you face every day.
0 -
I got the results of my bone scan today, it was all clear. Yay, no bone mets!! So as far as is known at this time, I still have "only" the two in my liver. The PET scan appeal got turned down again, and I found out from my onc that this is because you get basically the treatment plan would not change based on what is revealed by the scan. However, the other day at my support group meeting one of the other members said she got a PET scan and paid for it out of pocket. After the group meeting I went to the business office and asked how much it would cost out of pocket and it's an amount I think I would be willing to pay, once, just for peace of mind and to know where I stand. So my onc is going to check out, if he orders it and I pay out of pocket for this "non-covered" PET, does it cost what I was quoted by the business office or would it be the (much higher) cost that one would pay walking in off the street and asking for a PET scan at a radiology practice.
I said before I was not going to tell anyone about mets until I had some definite information, but after two Sundays at church trying to figure out how to answer the "how are you doing" questions without revealing new diagnosis but also without telling any lies, I gave it up as an impossible task. So, I've sent an email to the choir director resigning from the choir (I had to be put on a ventilator overnight in January when adverse chemo reaction made my lungs fill up with glop, and still haven't completely gotten my voice back, plus I'm retiring and moving soon) and revealing mets but asking people not to question me about it because I don't want to discuss--sent a letter to a friend who used to be in the choir but moved three counties away, revealing BC and mets (amazingly USPS delivered it the day after I mailed it late in the afternoon, not bad for snail mail), I need to send email to rector (although choir director probably let cat out of bag) and I think there's one more person I need to send an email to, and that's it.
I still haven't told anyone but family where my new house is. Oh and I have told people who are coming to give estimates for repairs but that doesn't count as revealing my whereabouts because they won't come back once the job is done and they won't tell any of my friends/acquaintances by accident.
0 -
Curveball- glad to hear nothing in the bones. It is always good the out of pocket costs up front. I have had to pay for a few things out of pocket and usually most things are about half of what they would bill insurance.
You have handled sharing what you want with your community very gracefully. Your choir will be there if and when you want to resume that.
Wishing everyone a good weekend!
0 -
Curveball good about u'r bone scan--but I know u'r going thru alot--but so far u really have control on handling it. U seem like a very organized type of person.((( (prayers))) being sent to u.
0 -
Camille....we went. It went very well. The doctor is a sweetheart, and shook his hand, welcomed him and directed the conversation his way also. I think it was a good idea in the end. Also, my wbc count was 4.9....so I just narrowly escaped the Neulasta shot....which I am happy about but suspect as time goes on I may not. To anyone who knows: Is there anything I can take, like a supplement, or to eat that naturally boosts this count? I don't want the Neulasta if I can avoid it. I've read of a supplement about half an hour ago and already forgot the name as I type this (chemobrain...that's my excuse) but apparently its from a tree in China, and is specifically geared towards cancer pts after chemo to boost their numbers up.
Markat....I was, the day before chemo, day of, day after. After that, no. The "acne" started two days after chemo I think so I don't know which it's from? Anyway, I loaded my face up with some Neutrogena stuff (which the derm's office has since told me NOT to use as my onc's office called and got me an appointment in the wee hours of the morning Monday which I can't imagine making on time) and I looked like a snake. I guess I overdid it, and was "shedding" skin all day due to dryness. I asked a member here what her onc gave her, and it was a Clindamycin based cream, which I have a ton of in the house (18yo boy with acne issues). I tried it last night. Seems to have helped. My onc would most likely ask me where I went to medical school, but I am so tired of the appointments, and was just looking for one less place to go and be touched, poked, felt up, prodded, etc!
Curve...CONGRATS on your scan!! May it continue for you! I only have one bone met...hoping to keep it that way. Funny using the word only huh?
Blondie..my son overheard me making me next onc appointment Wednesday at 1:30....promptly said, "Oh, you really shouldn't come here alone....I'll go with you if YOU want to pick me up from school????" So, it went well. Now he thinks he's going to all of them with me. I considered taking him to chemo too (prior to taking him yesterday) but wasn't sure how he'd handle seeing me hooked up like that. Yesterday he watched the bloodwork, didn't flinch....so I think he can hack it.
Have a good day Hermits!
Lynn
0 -
afterthought...
I asked my onc's office how much my first chemo was because I am foolishly at times curious by nature (big mistake). Billed out at 41K, but I "saved" 5,000. because I didn't get the Neulasta the next day.
I actually started laughing...like really laughing out loud. They must have thought I was nuts...but I couldn't help myself.
Are you kidding me?
0 -
Wow! You hermits are busy! I'm having trouble keeping up.
Glad to read that there are more good results.
Curveball, not sure if the laws are different in your state, but here the only way to get a scan (of any kind) is with a Dr's Rx regardless of method of payment. I used to work in the hospital here. Pricing can vary depending on method of payment. If you are planning to "pay in full" at time of scan make sure they understand that because it can make a difference sometimes, in your favor. Hope it works out that you get what you want.
I can't get back to the prior page without loosing my post...was it you Jlynn that said you were trying to find your "half-full" attitude? ME TOO! I am also trying to find my HAPPY! I used to be so happy and optimistic. I have not felt that way in over 2 years now...
I used to get excited and look forward to things...not any more. I used to be passionate about things...not so much any more. Most of the time I just feel neutral or blah... I really want my HAPPY back just don't know how or where to find it!I hope everyone has a very good weekend!
0 -
FL...
Yepper. That would have been me! I'm working on it. SOOOOOOOOOOOOO hard sometimes.....because typically, I don't whine, I don't complain, I always look at what's worse. Lately, I feel like I myself have it the worst, even though I know perfectly and full well that's not true at ALL!
Getting there I guess...but that's for now...until something "new" pops up...that call from your oncologist post scan that we all learn to dread!!
Sorry to hear you're struggling.....I know it just sucks sometimes.
Lynn
0 -
yay Curve!!! they told me at chemo that a PET scan cost 15,000!!
Jlynn that is excellent, what a wonderful son you have....
@{{{{{HUGS}}}} TO ALL OF YOU...Happy Weekend, I have birthday party at build a bear, pix for grandchildren @ the pix place and dinner @ friendlys....guess I am going out this afternoon...
0 -
Good morning hermits. On the subject of looking forward to things, or loosing your passion, I am there too. So many things I used to really move towards don't really interest me quite yet. I think most of us, especially some still in the most active treatment phase, just getting by day to day, or even hour to hour. Holding our breath as we go through more tests or step into the next phase of what we have to do.
My sister, who is a doctor, and also going through bc treatment right now, said she used to notice all her cancer patients were very stoic during their apts with her. Now she says she understands why. It's sort of like getting hit in the head with a 2 by 4, and walking around dazed all the time. Never knowing how you will feel, react to something you have to do, what the news will be on the next call you get after a test, or even how people react to your situation. It's a lot of work, really.
For me, it has been reduced to living day to day and being present in the moment. I am now just trying to find something in every day that feels good. Even if it is a good meal or a good nights sleep. Life for me has been reduced to it's most basic terms. But I do hope the joy and passion will come back to me, and to all of the sisters on this thread who are seeking the same.
Got some work/calls going on today so must run. Wishing you all a good saturday.
0 -
Hope Sunday brings a better day to those who are hurting.
Yesterday, dd1 and 2 gave a huge birthday party for dh, turning 60. Waaaayy out of my comfort zone, but he loved every minute of it. I'm emotionally and physically drained--and in complete agreement with most of your expressions above. Only three at the party know about my bc, and I like it that way. No one gets it; I am like FL in wanting my Happy back. I am not the same person pre-bc, filled with optimisim, energy, and willingness to be spontaneous and ready for anything. My tendency at the moment is to curl up and ask to be left alone. (I am trying to blame some of it on parent-teacher conferences. Those are always exhausting. But then I think it could just be se's. How can you be your old self when you hurt and are tired to your deepest core?) Oh, well. Glad for hermits who understand.
Happy St. Patrick's... Curve... hugs to you.
0 -
Happy St. Patty's Day hermits!
Teka- you must be getting snow again?
Skittle- wow, what a big thing you did for your DH. I can barely think to show up for parties, nevermind throw one. Glad it was successful but can tell you are wiped out. I hope you can get some rest today before you have to go back to work. I think wanting to be left alone is very normal, I feel it every day, all the time.
Wishing we could all get our groove back soon. I see little steps with my emotional recovery, but am not the same person I was before all this began (and also with some things that happened earlier last year before the diagnosis). I know some are waiting and watching to see the "old Jazzy" return, but she has morphed into something different now. I do appreciate life itself a bit more, and take each day as a gift.
My conversion is going well and did my last work call this morning. No more worky stuff for today, just things around home and a few errands. Oh and a big old nap too!
Blessings to all of you in all your various states of being this weekend.
0 -
OMG a party--that's great to do it. I stayed home last nite--
I was getting some of myself back, and then last summer all this other chit started and more tests and maybes of more cancer and SE's (mor of them) maybe all the chemo and rads (I think) plus whatever I take everyday---my brother called cuz my sister told him about the lastest stuff going on and I didn't want my brothers to know anything. They tend to tell me what to do--I know they mean well but I don't want to talk about all of this now I have to think of my next app't and what's happening today not next week--they don't get it and I make my jokes and goof around and they don't--they laugh but then they get so serious and thst's not how I want to be-my pain is getting worse and I did get stronger meds and he's talking about an operation and I'm not thinking like that--I think my own way and I feel like I'm old enough to feel my own way---but I'm still the younges (67) so I need to be told. I've been so down right now, but I need that in order for me to get up--I know this I've been going thru all this stuff for 6 yrs. but I don't really share all my feelings---I even apologized to my kids for being crabby--they told me I'm not acing crabby--but I feel it, when I lived alone it was easier to just me by myself--altho I am alone in my own island on the other end of the house so I have my privacy. My grandson is the only one that I never ever mind sitting and talking to me--hahaha and my Katie-kat spends all day with me and sleeps with me every nite and I enjoy her she's very vocal and cuddly. And when my GS has a bad dream he comes and sleeps with me and it's fine.
Wow I'm really complaining today sorry but I give u guys so much credit for getting out there and working. See how I've honed myself into a good hermit. LOL
0 -
Happy St.Patrick's Day! I feel like crap. Newest ailment is loud ringing and hearing loss in right ear. I had to cancel my scans yesterday because DH and DD1 had a horrible stomach virus. Now DH seems to have flu like symptoms. I think the family is making up for our fairly healthy winter last year while I was going thru chemo. Or their hand washing isn't as good because they aren't afraid of killing me with a cold lol.
Skittle I feel ya! Glad DH's party was awesome. Your girls sound so sweet. I hope mine follow the same lead. Why are parents so uninvolved until conference time or until the police are escorting their kids out of the school? I'm sure that is very draining!
I got into an argument with a teacher last week about feeding a kid who constantly forgets his lunch money,is always dirty, has his clothes on inside out, and also has some spectrum disorder. He's in the 4th grade. Teacher wanted to cut off free food and let him go hungry. I had a lot of kids out so had the extra food to feed him. I fed him. Much to her disagreement. He was sitting at his table crying. I guess Mom and Dad are having problems or something. I'm not gonna punish the kid for his parents mistakes. Hell, they only pay 40 cents for his lunch anyway because of reduced price. I'll pay it! I haven't been able to stop thinking about that all weekend.
Camille sending you love and hugs. Rant away!
Hope everyone is having a great day!0 -
Jazzy, Camille, markat... thanks for being you. I appreciate all hermits here.
markat!!! Do you have a dhs there? (dept of human services?) By law, a teacher must report such conditions--if a child is showing signs of neglect or lack of care. Hungry/clothes--that's reportable. A counselor should be noticing! Someone needs to alert authorities on that little guy. I often provide snacks for my less advantaged kids (we have lunch at 12:10, so kids get hungry, so we allow a healthy snack from home), and things like tennis shoes when I notice holes... things like that... But I report it any time I see things like continual dirty clothing, the smell of cat urine (sign of meth lab from the chemicals)... things like that. I'm so glad he has you looking out for him. How can he learn if he's hungry?? agh! Some people shouldn't teach.
Camille... glad your grandson is a shining light for you. I hope my girls will meet someone soon, but there seems to be a shortage of "nice" guys these days... They both would like to live happily ever after with families of their own.
Jazzy... you sound so busy at work. I am blessed with spring break this week (!!) so can take a break from reality and spend time on "chores" that have gone long neglected. like getting a new social security card. I haven't seen mine like in 20 years?? I hope you enjoyed your nap.
We took the crazy plunge... and adopted a dog. At first we were told he's four, then met him a few weeks ago, he's five... and brought him home today, looked at his papers, he's seven! (So far he has chased a rope, gone for six walks, gone for a run with dh2, supervised the installation of a dog-proof kitchen door, and has cried like a baby when left alone--we're in the next room...) It'll be a long adjustment for our two cats. (I feel so guilty!) But if it all works out, we'll just have added the biggest new member. Here's hoping for a peaceful transition. (and, I know--what am I thinking!!??) sigh.
0 -
Good evening Hermits, I just love it when I am home, I did go out today to get chinese food for dinner for me cause twins were out....
Jazzy - busy, good for you...
Cam - ??? is it cause you don't want to know anything or you just don't want to talk about it.....I am an only child and my kids don't know anything cause I just don't tell them, and I have a grandson who is 6 who is really the only 1 I want to be around.....
Mark - I get that especially with a child on the spectrum, they usually have color and texture issues....also you are right there might be something going on in the house, and sometimes that is the only meal kids have a day...good for you. Not in comparison, I have 5 cats on my deck that I am feeding, it is winter time and I don't want them to die/starve, 1 had babies and 2 have died and she keeps moving them.....people are giving me a hard time about feeding them and where I live you can get a fine for it, will keep doing it....
Skittle...what is the dogs name....
have a good night!!
0 -
Cami- you have been going through this for six years. I cannot even imagine that after just going through it for six months. I think you have figured out what works for you, who you tell, where you need to have space in your home. So many people don't get it, even those who love us and want to help in some way. I am sorry for your pain and also that you may need some sort of surgery. You share all you need to here any time.
Markat- sorry about the ringing in the ears and the hearing loss. It's always something, isn't it? I hope your family is feeling better soon. So many children are going hungry too, as the parents have lost their jobs, etc. You were so kind to make sure that boy had something to eat. My guess is it could have been the only food he got that day.
Curveball, FL Warrior, Skittle, Teka, Bgirl, Blondie, JLynne, and everyone else, wishing you a good week whatever you will be doing....
0 -
Markat---Oh no I feel so bad too---this poor kid--OOHHH U'r so kind to do that and the hell with what they say---u never know what's going on in their lives and if u can do 1 thing to help--it's wonderful.
0 -
Just checking in....I hate the winte, snow, sleet and rain later, hopefully not that much...
Oh happy monday!!
0 -
Happy Monday hermits: The local news says it is "try to be happy week." I guess I can try!
East coast hermits, hope the storm is not too bad coming your way. I know you are ready for spring.
0 -
Hermits,
I have read many of your posts...they are inspiring, and funny! I typically hang out on the TNBC and stage 2b with nodes threads.
I go back to work part time one week from today, pretty much just as I am starting radiation. Any advice? I have been ok, with some big exceptions, while hermiting. But I'm nervous about going back to the real world, work pressures, etc.0 -
By the way -- Teka, my mom grew up in Lake Placid and I spent a lot of time there as a kid, visiting my grandmother. My family also has a camp on Piseco Lake, built by my great grandfather. It is the highlight of my summer.
0 -
Placid, welcome to our group! I don't have any advice about rads, but hopefully your employers are flexible and understanding.
Thanks all for understanding about how I was upset about the student. DH said that I shouldn't have argued with the teacher but just fed the kid when she left. But like Skittle, I was just shocked that she didn't want him to eat! I understand that school budgets are tight and certain people need to learn responsibility, but the food was there! She said, "these people need to learn that they can't abuse the system". I think that ticked me off the most. All those greedy 10 year olds with special needs abusing the system!
Skittle I asked my administrator about calls in to children services, and I guess they have already been called. These kids I'm finding out, are really poor. This is pretty much their only therapy unlike people who seek out additional services for their children with different forms of Autism, ADHD, and emotional problems. Sad.
Hope all are having a great day!0 -
Markat u have a tough job--good thing u r a caring person.
Welcome Placid--I think it's hard to go back to work, but maybe the part time will be fine with rads. They usually make u tired, so the weekends u might really want to hermitude u'rself--I don't really know cuz i never went back to work. But a few on the board have--that's why part time sounds better to me anyway.
0 -
Hi Placid- I went back to work PT last December after two surgeries (one for bc, one for something else). I had to step away to do rad treatments during my work time too. I work as a consultant and just told my client I had to be away at times and let them know when that would be.
You will be tired from the rads and if you can do your treatments in such a way you can go home and rest after, it will help. Try to sleep as much as you can.
I felt very strange after all I went through, going back to work and trying to pretend everything was okay when it was not. But since I am self supporting, I just decided I would try it and get back into the game. I am glad I did as the routines do help. I also found I was laying around too much obsessing about all the what ifs.
I made it through two rounds of internal rad treatments out of state and was also able to work remote during those periods. You can find a way to manage this by finding a plan for yourself and just doing it. None of this is easy, but it is do-able. We all have different experiences and energy levels as we go through this so just try some things until you figure out what works.
Just keep up the boundaries at work and leave when you say you need to. And honor your hermit time needs when you don't have to be there. You will do just fine. We are here to support you as you need us!0 -
Camille, it is such a great job if it paid some more money lol. I only see the kids for 20 min and they love me because I give them food haha. One little girl told me she loved me...later my friend told me she was a foster kid. Ugh.
Anyway hope all our ladies going through treatments are feeling okay tonight.
I've been feeling sort of negative lately. Which stinks because I hate that! I wish the money tree would sprout in my back yard lol!0 -
Jazzy -Thanks so much!
0 -
placid welcome....
Mark, no worries, they know they have you and they need a smiling face, I am sure...
Know I am going out later, I promised, guess I am...chemo tomorrow again.
have a good day!!
0 -
Hard to believe it's Tuesday. Hoping all is better for each. Treatments, rads, waiting, families feeling better... Spring break has brought pollen and a renewed attempt to clean what I've been putting off (a lot). The "new" dog has no name yet. We're building a fence for him to have a safe place to run. Since we're out in the country, there are too many hunters who will shoot at anything, dog fighters who kidnap any dog over 40 pounds, and drivers who think back roads are for drag racing. To keep him safe, he has been on leash for the past two days, and it's like walking an enthusiastic bulldozer. (It's hard on him because he doesn't understand all the new expectations, but my arms are not so sympathetic. Maybe my MO will be proud of my new resistance training...)
Jazzy... Don't overdo. Give yourself time to feel better.
Placid... hope you aren't battered by yet another storm. We're supposed to get torrential rains soon, but nothing wintery.
Camille... I hope you're able to squeeze in a good day or two. You've had a rough stretch.
Bgirl, teka, Fl, curve, blondie and all... thinking of you. Hugs to each.
0 -
Hi ladies---Oh who's got chemo tomorrow--Blondie? Hope it goes well.
This goofy weather wind chill is 5 below--so I'm still dressed for winter, but I don't mind I get to cover my body then.
0
