The Hermit Club

jlynn - I am usually a positive person, but cancer has made me whinny at times.  Here has always been a safe place.  Others understand and make me feel better, even if they are going through worse crap.  Emotional up and downs are normal ... all grateful for treatments available, but it still SUCKS! ....  and it is okay to whine about it sometimes.  Society has set up this image of the happy cancer patient who sails through treatment ... but I think that is not often the case ... and even those people behind closed doors have their whinny days too.  Especially when you get the less common SEs and think why am I the lucky one.  Like getting your biopsy "that should be negative" back and it's positive for BC.

I'm here, but at a loss for words.

Camille...

I know you're right.  Sometimes, trying to be eternally optimistic gives you a damned headache!  I think, I am trying so hard to be the polar opposite of my mother, who whines constantly.   Taking my son to the onc with me today.  I so hope I'm not doing the wrong thing.  I guess I just thought if he went with me, saw how well they took care of me, met the doctor, he'd feel better?  He's 15....very mature for his age.  Said he wanted to go with me. I hope I made the right decision!  Sorry about the D still acting up on you!  I had it some yesterday, but it's calmed down today, which is good since my bathroom wont be just a few steps away in a little bit!!

Lynn

agree with all of you!!

My twins went to chemo with me separately @ 19 and my granddaughter was 15...they all said it was boring, but they don't realize it was support for me, not to entertain them....my older kids who are 38, 35 and 31 has not gone anywhere with me, apparently they can't handle it, a friend of mine goes, sometimes, when I tell her or make the appts when she can go, feel bad that she rearranges her schedule and she only does it cause my kids don't, and I am an only child and parents are deceased so basically alone, which is fine..

nobody understands what we go through on a day to day basis, even if you have cancer, it is individual....my kids say, what is wrong with you, or why are you in a bad mood, or when do you go to chemo, can't keep up with your schedule....thank goodness for this site....we can do whatever without judgement...I am so glad I found it, the first time I had in 96 there was nothing....

Happy Friday and thanks friends...

Cam definately get it!!

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.

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! 

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

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!

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...

March is going out like a lion!

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.

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!

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.