Fuzzy's Romp Room

dunesleeper

Thanks everyone!

Party-time in my pockets coming up in about an hour and a half. I'm tucking some good, healthy snacks and some not-so-healthy ones, as well as a variety of beverages in those pockets. It's a pocket party.

And ((( pt ))) I'm waiting with you too.

crog234

Ridergirl. In your pocket and anyone else who needs it this week...



PT waiting with you for your results....



Cindy

sas-schatzi

Notes for next post--Rider-Thinking&hip sx, Chevy--hands and soap, Sheryl(pain and being tx'd diff) & linda & lisa thanks& why the feelings of hoplessness? Let there be peace, Fuzzy bruise.Dunes smoked sausage ugh.PT MRI,Gail

Rider good luck thurs re: sx consultation, try PM'g ChrissyB, she's incredible, she taught me more about bone mets than any book or oncology source. In particular that if one had to have a mets, it was the best of all evils b/c it could be present for along time.... if you get my drift.

As far as thinking, the long term memories seem mostly intact. It's the present moment where the forgeting is a problem. At one point, I decided to go with the "oh well" after forgetting something. Still doing it, just started the note thingy above a post so, I could remember what triggered the response. Could wipe out the remember note, but choosing not to now. We had these forgetful moments pre Bc, but didn't get uptight from them, now everything that happens causes us to be suspicious of the why. We fear that our minds will never be as before.

There was a study a few years ago on the connecting portion of the brain, that allowed communication of the right to left side (corpus callosum). My analogy from the reseach, was it was like the old telephone swiitch board. The study found when this area got clogged with too much traffic from one side, left to right & vice versa,  thinking was impossible or severely limited. The researchers conclusion was to think of one thing at a time, repeatedly. Applying that thought to history, many cultures developed a meditative process, that centered on thinking of one thing --the Mantra or Prayer---why my analogy of the telephone switch board? Visualize pulling one plug at a time.

The study done by realtime MRI also called "functional MRI", showed this connecting brain portion started to show less activity, meaning that the blocked activity was reduced or stopped which was measured by less electrical activity seen by the MRI. Counting sheep in their words worked. Million dollar studying by todays science, showed what humans had deduced by observation for thousands of years. Cool. Meditation works as sheryl& Linda wote. Basically, the brain is calmed. When the brain is calmed, we can return to normal thinking. Both sides of the brain can communicate and it doesn't feel stressed or frustrated. Thus thinking is easier. When we come here and write we "think"of a particular thing that strikes us from a dear ones post. We concentrate on one thing, so in a way it follows the act of a mantra. Once we post, then we leave the computer and are hit with all the thoughts of treatment, schedules, BC wanting something of us, and our minds start to get clogged again. Leads into so many things that Sheryl, Dunes, You, Veggy, Linda n, Linda-R, Lisa, Fuzzy, myself,  have either stated albeit differently, but the essense is the same.

Learned to save in these long posts b/c of systems loss LOL. Who can remember to rewrite these thoughts once on the screen and then wiped out LOL continuing to write.

On your sx, didn't know the following till DH went through a problem created by a spider bite with the resultant wound. Surgery or infection can delay chemo because wound or surgical healing will not occur if chemo is given. Chemo stops the bodies work of fixing things. That one sentence in and of itself, is worth very diffinitve study and is being studied. Hypothesis:(question) If the work of healing is stopped by chemo, then how can we decipher the healing mechanism to make it work to heal the cancer without the chemo? Much work is being done on all parts of the bodies systems to see/learn this very thing. Research articles are being published all the time with reports that "this or that is shown to do this or that". Over time puzzle pieces are being put together from all the divergent research, to improve our understanding of a given system. A huge example of this is HIV/AIDS. As hateful as this disease is, our understanding of the Immune System b/c of the last 30 years of research, is light years ahead of where it would be had HIV/AIDS not been recognized early that it could wipe out the human population. The scientist throughout the world came together to solve the problem, AND an unprecedented sharing of information. Now there is even thoughts that HIV/AIDS can be cured versus a death sentence. The understanding of the IMMUNE System has overflowed into all other areas of disease research.

Another thought about our postings to each other, when we write we attempt to organize our thoughts to communicate a response. When we do this, we are also, talking to ourselves. To give clarity to the communication, we must create clarity in our own mind. We identify how the communication is important to us. Thus, we are teaching our own brain about what we believe. I have described to patients for decades that as we say or do something, other parts of our brain is listening, evaluating, and correcting. Most commonly heard by others when we do a self correction of a statement as evidenced by the words "What I meant to say" or as in an action "switching to another tool or mode b/c we see something not working" i.e a screwdriver versus a hammer.  This above also addresses many of the thoughts about posts from Sheryl, Linda-n, Linda-R, Dunes, Fuzzy, All.

Many times in lengthy posts, we apologize for going on and on. But if you buy into what I've said here. We are helping our own brains to heal. So, write on.

Rider, PTd, Dunes, Fuzzy, Chevy, Sheryl, Lisa, and anyone I missed pocket jumping, I'll bring the chocolate.

lisamarie68

Dune , I am in your pocket too.. I  got some cheese doodles though ! and Rider im hanging in with you as well. I been trying to catch up with all the reading here .

Fuzzy glad mom is doing better .. 

I don't know what to say except I am trying to stay posotive and live each day. I feel like I am in a dark place in life.. I keep searching for the light, but it seems so far away. I like what i was reading about writing down one good thing about each day. I am so uncomfortable and hate the way I look and feel. I go to PS on Wednesday and I cant wait . I have dents now in my implants . I have no clue what the outcome will be . I do know if I need to start over then I must accept that as well.

 I know about addiction.. it sucks .. I go to AA but there is little comfort there . as like many they just don't understand cancer and pain. I hate pain pills so I am hoping the PS does not try to give me them .I think it just masks the problem at hand (just my opinion) Depression sucks but so do the meds for that. I shall pray for us all to one day be happy and comfortable with ourselves , and life.

I am single and very alone. I have a daughter I see 2 x a month and my granddaughter . not close enough to see all the time . that is about the only time I get to really smile . having noone face to face to talk to brings me down even more . anyway enough from me . I am working 12 hour shift today . I hope everyone has a good Monday

Lisa

Anonymous

I understand about hating the look I look and feel. One of my tissue expanders had to be taken out. The incision is healing nicely but I hate how I look... lopsided and disfigured. Its too soon to stuff socks into my bra to even out the boobs. Dressing up besides sweats is depressing.Self acceptance is still somewhere far down the road.

Today my legs hurt and I need to clean up around here. I keep saying one thing at a time, one thing at a time. I even posted on facebook to see if anyone would like to come help me. No takers. If I can just get things put away half of the battle is won.

I find joy and comfort in my sons and husband, family and friends. Yesterday I had an anxiety attack just from being around people and their germs. My coffee break is almost done. Time to attack the laundry and fold the towels.

Hugs!

sas-schatzi

Veggy, are you up to the trip to the checker, or would you rather pass?

sas-schatzi

Fuzzy, the bruise on Mom's leg. Question for the docs. "Since the myoglobulins can't be filtered out by the kidneys, what happens to them? Can they cause any complications to other body systems i.e. brain, major vascular system, cardiac vessels, peripheral vascular, primarily down to the capillary level, analogous to a logjam. Are they filtered by the dialysis machine?"

sas-schatzi

A common feeling being expressed here at this moment in time, is a sense of hopelessness and that we have had it life long. Many suggestions to try to overcome it. But my question is why is it common among us? I too have experienced it lifelong. At the present moment I can't ever remember it not being there. Right now though it's gone. Have been analysing the hell out of it trying to pinpoint when it changed and why, so, I can reproduce the change if it returns. Lots of surmizing, no definitive answer. Going to find some chocolate.

Chevyboy

And Sassy, I will bring the screw-drivers...Ha! 

That's funny that you mention spider bites.  Well maybe not so funny.  It was about 20 years ago, I was bitten by a brown spider.... At least that's what the Doctor said.  I went to see, because after  I sat on it, ....  it swelled like the size of a grapefruit..... was hot, red and itched.  The skin started getting hard and pitted.  I was treated with SOMEthing, and it eventually went away.  It had to have left a poisonous reaction somehow.

And yes, the wasp stings!  A few times!  I DID carry an epi-pen, but after a year, it expired, and I had to throw it away.   I hadn't thought of getting another one.... I just carry Benadryl around with me, and a rescue inhaler, and I know if I start with that dizzy, breathless feeling, something is wrong, & to get to emergency. 

I believe that all of these things, that happen to us, as we go through life, make a difference with our immune system.   For so many years I was treated for allergies, asthma, bronchitis, allergic reactions, and was always given antibiotics, steroids, adrenaline, for the anaphlactic  shock I had started a few times, and even benadryl "in oil" while having an asthma attack.  Not to mention what I got myself into with the poisons I not only breathed, but were absorbed through my skin.

So now, here I am.... Sure I have some skin problems, but are so much better now.... I will always cream my hands, wear gloves at night, and once a day use a little bleach bath in the sink....  I might be getting almost normal!   I am so fortunate that I am as old as I am, sleep well, get around really well, and am happy.....

Thanks for your insight on EVERYthing it seems like.... You don't know how many times I have printed off what you write about!  Like this last one!

So thank you Sas, and happy New Year to all of our friends!  xoxoxoxo

dunesleeper

Back from the ultrasound. Had you all in my pockets. Hope you enjoyed the xanax, drinks, and snacks!

They saw some cysts and want me to come back in 6 months. I can deal with that.

ridergirl

Dunes so glad you got news you can deal with. And looove the idea that we are actually all physically 'in your pockets'

(((((hugs sweet))))

dunesleeper

I can really relate to what you said lisamarie: "having noone face to face to talk to brings me down even more." The Romp Room has been a life-saver for me, and I am grateful I have my face-to-face group once a month, too. That face-to-face meeting would be a whole lot more fun if your girls were there!

Veggy, just do what you can. I think it is good to be moving around and getting some things accomplished, but please make sure to put your health first. I'm sorry you got no responses from your facebook post. Just don't try to do it all.

Loved the chocolate and screwdrivers! 

heymoose

Dunes, happy you have a diagnosis you can live with.  The picture is great with us in your pockets, and the party was great.  Loved the snacks.

Hugs, Cheryl

Anonymous

I'm in your pocket! Cool! Loved the xannax! Hugs!

My guys finished up the cleaning. I'm happy with what was accomplished. Tomorrow is another day.

lisamarie68

I Love Love Love that pic dune .. sorry you have to go back in 6 months .... I say Yuck Yuck Yuck ... but I am sending HUGZZZZZZZ

Lisa Marie

Linda-n3

Just stopping by for a quick "hello" to all. Am so glad dunesleeper is "good to go" for another 6 months.  Interesting questions raised by many of you... gives me pause, sitting here reflecting, coming up with: "I GOT NOTHIN'!"  Must be my right brain and left brain are either neutralizing each other or else they are both on strike and doing nothing at all.

And here is something that may be TMI, but I wanted to share with you that I knew when I consented to a BMX that I would NOT be having reconstruction because I could just not imagine myself doing any more procedures.  I have had enough pain, enough anesthesia exposure. I was extremely paranoid about the way I would look, how family/friends/DH would feel about me, etc. I asked about immediate reconstruction because I thought I might do that, rather than TEs, but PS and BS tossed it back and forth to each other so many times, not agreeing on skin-sparing enough to allow for immediate reconstruction, etc etc blahblahblah.... SO, DH reminded me that I could make a decision later, it wasn't that important right then. After surgery, I developed an allergic reaction to the chloroprep that they used in the OR, the rash extended across my entire chest, abdomen, etc, including incisions & drain sites. Within 3 days I had a raging infect seroma and was nearly septic.  Took a month to get it under control (I still have a lot of pain that I suspect is lingering from all the inflammation), but the main point is that I would have lost any reconstruction due to all the complications.  After that, I decided no way was I going to risk that again, and so set my mind to living without reconstruction.  It has not been all that bad.  I have found that sometimes I use prostheses and sometimes I don't because they are also cumbersome. But I just wanted to remind those of you who are having problems that there are options that don't involve pain, procedures, anesthesia. The scars don't really look any worse than the scars from reconstruction. It is just the shape that is different, and when I look in the mirror I see a pre-adolescent body rather than that of a grown woman. And it bothers me less each day.  I am not advocating for NOT doing reconstruction, but letting you know there IS A CHOICE.  I fully support the choice each woman makes for herself, and in the end, you really have to be honest and true to yourself, and no one else!

Now, I need some ideas on how I can be outrageous again.  I know that before BC, I was highly energetic, had a great sense of humor, was pretty much in-your-face blunt-but-honest, and kept people laughing and feeling loved. I find myself being negative, tired, in pain, totally lacking in a sense of humor, at a loss for those smart-alecky quips that just came out so naturally in normal conversation.  And I know from reading your posts that most of you are very much like me in the past, and hoping you can help.

OK, so I know this was supposed to be just a short "hello" note.  I also have a problem with verbosity. And I feel validated for that by Sassy's comments about writing, being in the moment, getting that right brain/left brain working together....

Hugs to all of you tonight.

Chevyboy

Linda, you have been through so much!  For me, it seems like when I look back on everything, it seems AWFUL now.  But at the time, you just try to go on.   And you, like me, will someday look back, and think "How did I get past that?"  It hasn't been that long for you!    It bothers you less each day?  That is good....

I didn't have NEAR as much involvement with cancer as most of you have had.  And I'm older.  So maybe that is why I haven't "lost anything"....  The thing that keeps me going now is, trying to keep myself & my Husband healthy, for another 55 years of marriage.    At this age, I know that every day is sooo precious.... That we have to keep going, and stay happy, and don't sweat the small stuff.  

It seems like now, I am taking over more for my husband....  I get so worried that his short-term memory is getting worse.  I do all of the driving.  I figure out where, and the route we are taking.  I didn't used to do that.... I used to just jump in the car, and ride along with him, when we were younger.    But it's like I'm taking care of him, without him knowing it.   

It's easy for me to say now, that he IS my life..... that thinking of going on without him, would make my life not worth living.  So you see, I have so many other things to think about now.... not too many of them about .... me.  

Well THIS is a rambling post....  But you gals mean so much to me....  that I can talk like this.... kind of validates what I am thinking.

thefuzzylemon

Oh boy...I reaaaaaly love the depth of these thoughts we've got going. Very much what true friendship involves. Just awesome.

For me, I think (more like hope since its so new) I needed to see that this is my deal...I have to stop thinking someone/something should be able to fix me. I mean...WE ARE WOMEN!! There's nothing more intense than that. I can do this, we can do this. So, my first baby step is not cancelling my friends visit tomorrow night. Then, Wednesday, I'm honest at group therapy and tell them how I feel about it. So, its like that "one thing a day". Im NOT going to kick my own ass because I haven't started exercising. My surgery sucked ass and I accept that...I'm not going to go into hiding because I'm sad...I have too many people here that I need and love and I don't want to hurt. Veggy, ya little stinker, GG, Dunes, Crog, Mama, PT, all the new gals, SAS, Linda, Nancy...EVERYONE!!

Oh dear...I kinda forgot everything else I wanted to talk about! LOL.

lisamarie68

I go to the PS Wednesday and I don't know where to begin with him... Umm doc I have pain, itching, burning , stabbing,dents  .. I cant get comfortable. I can't sleep well. I can't shave under my arms .. the implants look hideous .. flat wide round blobs .. I have Mentor smooth round moderate profile gel implants 400cc each . Oh yes my left is bigger than my right . I am 5 months post exchange and was hoping by now I would feel better and things would fall into place . not so here.oh yeah and tight again...why do I keep bitching ... UGH ! Fuzzy I was doing the same well confession still am hiding in my sadness .. yesterday I had a day off and I tried to go out visitng and everyone has the flu.. so I found myself eating chinese in my car in a parking lot alone like some homeless helpless person (really?).. what a day .. today I work so busy a bit ...I wished I knew more about implant sizes , the outcome , and what fits best . mine are so wide . I knew going in I would never look the same .. but jeeze I want to at least feel good . and I was not going to have the nipple recon and tattoo . but now I am thinking I would want that. so many decisions ... I also have not been able to find a real bra .. none fit these wide round funny looking things , so I have been stuck wearing sports bras.. ok I just gotta shut up now and hope hope hope for the best ...

thefuzzylemon

OMG. You just Keep talkin' girl!!! I don't think I've expressed this yet but I feel comfortable to do it now! I HATE THIS FOOB! ITS THE UGLIEST THING EVER! I look at it and cry...I think about it and cry!! Its hideous. Its bumpy and many different colors...seriously scarred...no where near what the right side looks like and it would take an act of God to get it right. And...lets just consider ANOTHER surgery...oh, that'll send me sailing!! Then there's the port scars and the 10 inch scar across my back...then all the frigging pain That I get to enjoy all damn day!! OH WOW IM SO GLAD I GET TO SAY THIS!!!! Its not a breast...its not even a pretend breast. Its a hunk of meat that has seen better days...with nerve endings. Ugh.

OMG. There. I said it. Oh thank you.

thefuzzylemon

Lisa....ya got me in a soft spot about eating in the car. Been there too sweetie. We gotta recognize this and try to straighten it out...its a pretty low feeling...

lisamarie68

I know Fuzzy .. well at least we can come here and scream ... I don't know what it takes to get over this .. but maybe we can find it out together .. xoxoxoxo BIG HUGZZZZZZZZZZZZZZZZZZ.....

Lisa Marie

thefuzzylemon

Yes...we'll shake on it. There are options and we need to do what's best for us. So, I say being p'd off right now is the first step!! LOL that's progress, right? LOL

lisamarie68

Yes .. progress is  good . I am right there with ya .. Shake hands ... I wished I had the answers for us both but I do not .. I will however have more info on Wednesday .. well maybe .. hopefully the PS wont look at me like I have 3 heads .. on my followup after the exchange i said I didn't like them .. and that one was bigger than the other and they were too high ,, and blah blah , blah and he said oh its just swelling .. and they look great ... yeah to who ??? you .. well my opinon differs and I have to live like this .. (what I felt like saying ) so that was September , I have givin it to now and feel worse than before and still look like an ass tooo ... so ... oh jeeze see I just get started and I am back on the Crazy Train .. sorry xoxo

Lisa Marie

thefuzzylemon

CHOO CHOO!!! im all aboard! I'll be in the liquor car...

my PS has always had a little piece of my heart. He's the one who crushed my soul when I said I was having a hard time breathing...he said I exaggerate...two hours later my respiratory system shut down...trust went from 100% to ZERO! So, now I need to schedule a follow up to see what the next step is...I can't stomach the thought of another dangerous procedure...another epic disappointment...I don't even know what to say to him. All I want to do is scream and cry and tell him how bad that hurts me...but, why? What would that do? Maybe I Could write him a letter???

lisamarie68

Okay Lets go All Aboard ... the Crazy ain will be departing shortly !!! Haha . I can't write a letter ,I got an appt 2pm Wednesday .. guess ill just bitch to him and see what goes .. ho hum 

ridergirl

Ya the whole sitting in the car reading a book eating my lunch/dinner whatever...started doing that while waiting for appts and still go back to it sometimes...pretty lonely feeling

Strike_Two

New to the Romp Room, but I gotta' rant and get this out of my system because I feel so guilty.

I'm just so ticked off that my mother in law is dying.  Like probably this week.  She's in heart failure.  (Some info - we've always had a good relationship and I feel great affection for her. I will miss her, but she's in her nineties, and it's her time to go, I suppose.)

My poor husband spent three weeks in the hospital in December with me while I underwent BMX and multiple procedures to take out the TE's and clean up the awful infection.  (Previously radiated breast.  Yeah, I fell into the "it could go bad" group.)  I was so ill that at one point moving me into ICU was discussed.   Now, I'm at home on a wound vac with a wound that won't close and I will probably need a skin graft.  Never mind that my first oncology appointment is this Monday.  The clock is ticking and I haven't even talked to an oncologist yet.

My poor husband.  Geesh  He does NOT want to watch his mother die.  He watched his father die and I think my cancer diagnosis is just freaking him out, even though he seems to have it all together.  Never mind that we have three teens still at home and his work which is a bit high pressure right now.

Oh, did I mention my mother-in-law lives five hours away?  He has three siblings constantly with her, but I feel guilty for not encouraging him to be with her at the end.  His siblings aren't pressuring him, but "I" feel like they expect him to be there.   He just came back from being with her, but doesn't want to hang around for days to watch her pass away when he wants to be with me.

Thanks for listening.

Anonymous

I want to be in the caboose. Find me the biggest glass and fill it with tequila.



I hate my scarred up body from the thyroid scar across my neck, the indented port scar, scars from drains and the loss of a tissue expander. My friends tell me that I am bitter. I wonder why. I have lost 98% of my hair and gained weight. I have no clue when chemo will be done with. I don't feel like a women but some kind of freak.



I try to do one thing a day that I enjoy. Most of the time it's here. It's the best support I have. Love you guys!

thefuzzylemon

STRIKETWO...that's a lot...and we will always listen. What a wonderful long life she must have had! So, what is you DH going to do? How are you doing?? And, your three teenagers?



DH just backed our truck into my DD's car...ugh.