The Hermit Club
Comments
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CS, wow that lady sounds like a really nice person-not! My mom had DCIS, but she tested negative for the BRCAs, so I kind of thought I could wait awhile before worrying...oops. I hate the thought of my girls having to start this process so young. I think most oncs suggest screening 10 years before your mother was diagnosed, which means 20 yrs old!
My neck is better. They must have roughed me up.0 -
OK markat I'm glad u'r neck is better, sometimes it is from the knock out stuff causes neck problems, at leas once I was told that ??? And I know worry about our dgtrs is crap. My girls go all the time and now when they go they have more worry than before. One of my dgtrs has diabitis (sp) 1 and she freaks out a little and my other dgtr is bi-polar and she says if this happens to me no more pills I go thru this all manic and won't remember a thing and I'll be happy as can be,,(she thinks she's funny) So the cloud is over them--Plus as u know my cousin, my neice, my sister and now brother--so all of the girls (40's) are freaking out. My sisters dtr was the first (early 40's) and it was like dominoes and that's why when I say about how young everone is, she amazes me she still has the holiday and insists and 3 young kids, but there are days she said she just stays in bed it's really rough taking care of everyone. Sorry didn't mean to go into family history here LOL or did I.? hahahaWell my days is starting so it's no big deal like every other day--but Dr. stuff today ick--U'd think we'd get so used to it--I never do. but it routine stuff so nothing really.
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Early mammos aren't the magic answer. I never had one before all this either but the one that I had after they diagnosed the Pagets found nothing abnormal and the ultrasound came up clean as well. There was no push for me to have an early one anyways since I don't have a family history of breast cancer.
I start my chemo tomorrow. I took my first Decadron this morning and my blood sugar is already way above normal. I have to keep reminding myself that I'm only taking the steroid for 3 days and that I have the other 2.5 weeks to get my levels back under control.
My family has been really great so far. I gave a bunch of almost new underwire bras and low cut cleavage showing tops to my one niece last Sunday and she seemed really thrilled (I had asked her the week before if she was interested). My oldest nephew (41) said that he was going to lose his hair in solidarity with me though he's been steadily losing it for years now. LoL I wish they all lived closer as being around them tends to make me happy.
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Jinkala I know exactly what u mean--when our families (my sister's) and mine are together we have so much fun We laugh at everything and enjoy all the food we normally don't eat and we take our time even talking---and I leave with such happy feeling and always the next day I talk to my sister and we go over everything incas one of us missed something and we laugh all over again. I really treasure every time we are together
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Camillegal hope you had a great day.
Jinkala best wishes for tomorrow! I hated the decadron! Have you cleaned your whole house yet?
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I love your nephew's comment, Jinkala. It sounds like you & camillegal have nice families.
Regarding mammograms, even after we knew about the lump, I went in for both a regular,baseline mammogram & a diagnostic mammogram. Since my tumor is so far back (it's attached to the chest wall. Well, was) it doesn't show up on a regular mammogram. They serve their purpose, but it still wouldn't have caught my tumor.
I had Taxol #6 today - only six more to go! I felt like I had such a productive day - made an appointment for a PET scan in two weeks, was referred to a plastic surgeon who I will meet in two weeks, and got a tentative date for my mastectomy for the end of October. My oncologist agreed with me that I need a bilateral mastectomy, which I am oddly happy about.
I'm still working very part-time, but it's starting to get to me, that I waste my good hours for a job and then am too exhausted to spend quality time with my family. I've been seriously considering going out on long-term disability, and talked with my work earlier this week to get things in motion. I talked to my doctor today to see if she would sign off on it, and she was more than supportive of me. It's nice to feel like I have a solid plan to spend time on just myself & my family.0 -
CS, I think going on leave would be a great choice. I had a part time job in the summer and I didn't go back this year. Financially it's been a little tough, but the time wasn't worth it for us.
I only had the one diagnostic mammo. My tumor was showing 5cm very clearly cancer. Then I had the week of every other test.0 -
I finished my first Chemo - went mostly okay. I had a slight back ache with the Taxotere so they slowed that down and the ache cleared away by the time the Taxotere was done. I got a puffy red vein spot and another puffy spot above my IV with the Carboplatin so they had to find a new vein and inject some Benedryl and something else in the IV before starting it back up again at a slower rate. The Benedryl really made me sleepy so I had to wait around after I was done to let my head clear up enough to drive myself home. After I got home I fell asleep for over an hour until my boyfriend got home from work.
No clean house. I was at work the full day yesterday and I really didn't feel any bursts of energy at all though I did have trouble falling asleep at night (even though I was tired and didn't feel like being up). I even got a slight headache and my knees started aching too yesterday evening which I think was either directly from the Decadron or from the high blood sugar levels caused by the Decadron.
It's terribly hot here at home. We don't usually get many really hot days in the year so my house's lack of air conditioning normally isn't an issue but today I am really wishing I had it. Fans and open windows just don't do much on days like this.
My family really is awesome. I always feel a little guilty when I hear people talking about various family problems (and some are quite depressing and serious) and I realize just how lucky I am. We all get along well and everyone has such great senses of humor. I see my oldest sister the most since she lives only about an hour away and she's caring for our Mom now so I go out and visit on Sundays and she often has some of her kids with their families over on that day too and I've realized that all of her kids have picked spouses with great senses of humor and their kids are developing along those lines too. Conversations can get so goofy at times when I'm with them. I was telling one of my neices that I had been thinking while walking to one of my appointments about how people talk about breast cancer survivors and what would I answer if someone asked me if I was a BC survivor and I told her my thought was to tell them 'no, I'm a BC zombie - didn't survive' - and she thought that was a hilarious answer - because you know, if I'm standing right in front of you then the 'survivor' part should be pretty obvious. LoL
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LOL at BC zombie! That's fabulous!
My husband and I are currently doing our wills, and the discussion of who we would want guardianship of our son in case something would happen to the both of us inevitably came up. And we realized how blessed we are that, even if he and I were no long in the picture, that we are certain that there would be open communication and visits between both my family and his family. Sometimes these people I call my family drive me nutty, but at the end of the day, I love them all so much and am lucky to call them my family. How blessed are we?
I don't know much about the chemo you are on, Jinkala, but I'm on the same steroid/Benadryl roller coaster. I come home from chemo and can take a long nap, but heaven forbid I fall asleep that night because the steroids are still wreaking havoc. I had a chemo trip yesterday, and didn't fall asleep until aft 5:30 this morning because of those stupid steroids. It's so irritating. I am absolutely exhausted tonight, but I'll be surprised if I can fall asleep.
Speaking of chemo, one of my most annoying and trivial side effects have been bloody noses. Yesterday in my appointment with my oncologist I got a bloody nose, bad enough it concerned her to refer me to an ear/nose/throat guy. So today I had my nostrils cauterized. This is so freaking annoying. Besides the initial hurt, I'm not supposed to blow my nose for 2 weeks. You MUST be joking!! It's been 5 hours and I'm ready to lose my mind.0 -
Especially when you know you CAN'T blow it! Mine are bloody too, but not too intense. I hate this constant drippy nose!
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I swear, the benedryl was the worst part of chemo day for me. Jinkala, have you thought about getting a port? It's been so easy especially with having to get the herceptin still.
CS, ugh about your poor nose! Mine was only in the morning after waking up. I did get an infected eyelid after trying to use mascara on my three eyelashes though. That was my weird chemo event.
I'm so glad you ladies have wonderful families. It's so important during these times! I love BC zombie.0 -
markat I have heard more women getting bloody noses lately what'sgoing on with that. and u got an infected eyelid??? And wait a minute U didn't like the benedryl? Oh that was always my favorite part and everyone knew it, I would tell everyone to leave me alone, but no one did so we'd set our chairs--(Nurses did it) in a big circles so everyone could hear and we'd laugh for hours so I never ot to sleep after that--even when I beged for it--, but we did have a lot of fun and when someone new came in we brough her right into our insanity and they relaxed more.
And Jinkala why don't u have a port? it's so easy for them and u---and it's a simple procedure too.
I did know I was in trouble when I was done with chemo and rads and asked if I should take my port out and my Dr. said no, not unless it causes trouble and we have to put another in. That gave a clue to me about my future--and it's been used so many times since then being in and out of the hospital--my veins aren't good anymore like when I was young. And neither arm can be used so I love it.
And BCZOMBIE should have used thst for her name---funny stuff.
And I'm back into I want to stay in again--and hide cuz I always look awful-really I do. LOL I'm not alone so there is enough activity around here, my grandson is here and cuddles with me everynite before bedtime and I love that so I'm happy with tat. I'm sorry I'm going on and on about me and I really am boring but I'm wide awake LOL so this post is stuck with me for now.
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The Benedryl wouldn't be a problem if I had someone to drive me home. I only live about 15-20 minutes from the hospital but there's enough traffic that I have to stay alert.
Everyone is in separate rooms at my Kaiser. There is no communal chemo room. I was a little disappointed about that though I certainly am fine just sitting with my books and reading. I still like to see what's going on with other people even if I don't interact with them much.
They haven't mentioned giving me a port and I haven't really asked. I don't relish the thought of more surgery. If I didn't have an arm to use that would be totally different, of course. I figure as long as my one arm can hold up for 5 more chemos, I'm home free. The Herceptin went in just fine with no issues.
My stomach has been feeling a little unsettled since yesterday. I took some Zofram so hopefully that is helping.
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Camillegal, your not boring!
Jinkala, I know what you mean about the Benadryl! My chemo room has everybody in it, and all the chairs face inward, so everyone can see everyone else . Not much privacy for me who falls asleep during benadryl with her mouth open and drools! Lol!
I only have Herceptin left now until next May, and I'm in a clinical study, so I get another drug(or placebo) with it. So no more Benadryl for me!0 -
My infusion center has separate rooms with curtain dividers, so I could drool in peace
They also have people in there getting blood and different infusions so it's not just cancer patients.
The port thing is totally personal and if you are comfortable without having one then that's great. My chemo nurses always use me as their show and tell for new patients thinking about getting one. I'm on Herceptin only now through the end of the year so it's nice to not mess with an IV.
I've been so lazy this weekend! Anyone doing anything exciting?0 -
Jinkala--I never drove I was always dropped off and picked up so it reallu didn't matter and i think I would like it better the way I had chemo in one common room--I was actually the big mouth for some reason and all we did was laugh and goof around and the hours went by much better
Sissy one of my girlfriends were talking and I told her we were the 2 boring people in all of our group--she felt hurt at first and then she started laughing and agreed with me We still laugh about it -that was a few years ago and we totally see it now. we do nothing different--bit I'm happy and so is she so.....
And markat of course u'r right about the port--whatever u'r decision is is the right one---I should have known I was in trouble when I was finally done with all the chemo, herceptin and rads and I said should I have the port out? and both my drs. said NO---and I've used it so much but again they can't use either arm but as long as u have at least one good arm there's probably no reason to have it. Never thought about that really..
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Camillegal I have a good arm but still love my port. I'm not sure what will happen after December, but hopefully my onc will suggest taking it out:)
Camillegal what treatments are you on now? I always read your name as Cam-illegal, lol. Hope you are having a great night!0 -
markat everyone reads my name differently--I'm so original
When I was in the hosp. last month I had 6
days and nights of beautiful potassium and magnisium
Then when I went in a week later I had another 5 wonderf days and nights on pot. and mag. and I'm still low but doubling my meds for it so it is no longer, as they put it critical but I'm sure u know pot burns going in and I don't think all the days of it I would liked it much---but with my port I felt nothing at all. Oh and something for my heart cuz it was so low my heart could have stopped and then they were giving me so much fluids my heart could have collected the fluids around it and another problem. My poor heart it was trying so hard ro be good now it was threatened by other stuff. LOL I still feel toried and icky it just keeps on going on somethin or other.
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Totally relate to this thread. I have been a hermit since February and other than doc appts/therapy I pretty much spend my time alone. The boards have been a blessing for me, but I must admit...google can be my enemy.
I am fine alone, there is so much to sort through and having chemo brain doesn't help matters. Chemo makes me so emotional, I have journalled daily SE's just to assure myself I am not going mad. Days of feeling hopeful then days of great despair.
Humour is a big part of my life, but of course, online as in RL it is subjective so I post little...
I will go back and read this entire thread, looks like home to me
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whaevah--I love u'r avatat--looks like my Katie-Kat---
Don't u just love chemo-brain, I didn't really think it was real--WOW was I wrong. Sometimes it takes me forever just to think up a word that has more than 5 letters in it. It's so helpful when u'r having a serious conversation with u'r Dr. (I really don't hhave many serious ones) but if I try it sounds silly anyway.
Maybe that's one of the reasons I like to be alone so much, well no,, I never minded it and my friends get so upset with me (not seriously) they just can't understand---most of the time I'm tired or don't feel so well or just plain lazy.
I do live with my dgtr and her family now, but I stay in my room as much as I want they all understand no one bothers me they have been good about it and my Grandson always brings me my coffee or anything else for that matter so why should I leave???
So this site is great we all know how we feel---hahaha.
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Welcome home whaevah!
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Welcome Whatevah! My chemo brain seems to be getting better now that I'm 5 months out from my last treatment. Or maybe it's just because I haven't been using it? We'll see when the kids come home with homework.
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Welcome Whaevah! Hope you like it here!
Recouping from Taxol #6. Whew...this one threw me for a loop. I talked to my doc this time about going out on long-term disability from work. Just another step towards full-fledged hermitude!
This chemobrain - holy moly. This weekend I gave up on ordering a pizza online because it got to be too difficult. I just can't follow directions, then I get mad at myself, then I have a temper tantrum. Pathetic, really. Glad to hear you think it gotten better for you, markat. Gives hope to others like me!
My chemo is in a big room, with five pods of four infusion chairs each. Not quite sure why, but whenever I have my sessions its usually me and a bunch of old guys. So the nurses will put me in an end pod, by myself. I took a girlfriend with me this past week, her first time there. We were laughing that they put us in the corner so we could use swear words and not offend anyone.
This is the first time I've taken anyone to chemo besides my husband. It meant SO much to me for her to go with me. I've had a lot of people offer to help...but it's the generic "if you need anything, let me know". Ugh. I hate that. But to have someone offer to keep me company meant the world to me. And I loved that she was full of questions for the nurses, as to why they did things a certain way. It felt like she was trying to get insight on what I was going through by trying to experience it with me. There are some good people in the world, I'm so lucky she's one of mine.0 -
Aww, thanks for such a warm welcome, love the cave:)
Chemo brain, asked DH to pick up salad ingredients and said... "please get those greens I love, you know the one that begins with an E"
It is arugula...or now as we know it, Erugula
Tomorrow I read the entire thread, wanted to today but SE were 'special' ...*groan*
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CS, so glad your friend went with you! I'm sure your hubby appreciated the help also! I really tried hard to make sure that mine didn't become to overwhelmed during my treatments. We couldn't have both of us a complete mess
Whatevah, too funny about the erugala. I remember trying to tell my husband directions to the hospital. "You take the big road with 3 lanes, you know with the ramp thing". Oh the highway.0 -
OK I'm laughing--it's so true I'm sure everyone knows that ramp thing market and the erugala---hshaha Now u know eactly how my sister and I have conversstions--My BIL has said u 2 talk everyday and see each other too how do u talk so long on the phone---simple most of the time we're either trying to explain something or think of it. or one of us will say u be quiet while I try to think. It's so frustraring tho. Or we talk to each other 2x in one day thinkin we talked yesterday--My bratty dgtr reminds us. So I'm still laughing about the ramp. LOL
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The highway to hell, turn left on erugula
On a serious note, I think hibernation during a health/healing crisis is a good thing for some of us. It removes the outside 'noise' and after reading this thread, it seems a lot of us are sensitive while going through treatment and do not need the second guessing and advise from well meaning people who cannot understand what we are going through.
I was never very social but my career did put me in a position where I was required to be, that worked then. I love my garden, great dh and a few really fun people in my life, that is enough right now. All give me space and I love that. We just need to honor what works for us, and let others do the same. My body/mind likes quiet. My dh is a movie buff and I am a voracious reader. It all works...especially now that I have found the woman cave.. mwaahahaha
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funny whaeveh
I think u'r right---I've been in the social settings and I do come across as very social--but I never could wait to et home to quiet. I don't sit here and think about cancer I feel like I think beyond that and more and I enjoy my alone time---My girlfriend calls it my ISLAND I have anything I need right here--well almost. LOL
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I'm all for woman caves!
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How did you find Taxol? I try to read the threads here as much as possible, but the SE's on this last dose have been a pain in the arse. Literally. Pooped out in all ways, sleeping like a baby with a little help
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