Any one else falling apart?

BlueCowgirl

And Fuzzy, what's this about taking off the shirts? I missed that...Sounds like fun! 

Outfield

BlueCowgirl, are you a really early riser or were you still up when you posted that last one?  

I was up around then too, but only because since breast cancer I can't make it through the night without getting up at least once to pee.  It's not painful, but it never used to be that way. Sometimes I try to just go back to sleep, because it's pretty cold to get out of bed, but that just prolongs it.  I wonder if it's fluid coming back into the rest of my body from my lymphedema or what.  I don't know.  I feel very old since all this.

  

nora_az

Good Morning Girls!  I felt so much better after reading your posts. You're right, I wouldn't even wish this on my worst enemy to "find out" what is really going on with us on a day to day basis.

My husband wrote something on his facebook wall after reading the emails from my 2 friends and seeing how upset I was. It really shut them up and one has come to me, not to apologize but just kinda like it never happened and to move on from the negative talk. First of all my husband has never usually come to my defense since I am so strong. I think he finally got pissed off enough.

This is what he wrote...

I just cannot wait for the new year. I am going to be so happy to say goodbye 2011.

Watching Nora struggle this past year has been really hard. She has done everything to show her friends and her family that she has been normal this year even with her battles. Watching her try and try, in front of people to be normal has been truly inspiring. At times she really did such a great job I do not think people realize she has been battling cancer for the last year. Watching her go out with friends to show her appreciation for there help something impressive even though she needed help out of bed that day. I just can not wait to have Nora back so that she can go out and really enjoy a night out on the town. A good Friend has told me that still going to be a few months. I just can not wait. Thanks everyone for you help this year. We will never forget.
Love you Babe

 So ya think he's a keeper?  I think so!  

Anyway....I also wanted to say something. I realized I am posting in a stage III group. I am IIa. Thanks for welcoming me like you did. I didn't even realize it till this morning. See how observant I am? 

jennyboog

No prob Nora, we all got the same aches, pains and fears.  I'm glad your husband did that and that you're feeling better.  My hubby did something similar when I had a similar situation, he wrote simply....want to know about strength and courage, then let me tell you about my wife....we got some good one's don't we

BlueCowgirl

Nora, that was beautiful! Go give that good man a big hug and kiss right now! (Personally, I don't have any issue with anyone of any stage posting on this thread or forum...we are all dealing with the same beast, and the more insights and friends who understand, the better!)

 And Jenny, glad you have a good one too. Hearing some of how people's spouses have treated them on the Cheezed me Off thread was so sad...So refreshing to hear of some positive, supportive partners!

nora_az

Yes, we do all have the same fears etc. To be honest, I think my ONC was being a bit of an optimist when he staged me. He said there was one lymph node involved yet there was also a small tumor (not sure of the size) found in the lymph node channel. I honestly don't know what that means and I asked the oncology nurse practitioner. She asked me to ask the ONC next time I saw him. The next time I saw him it totally slipped my mind.

Have any of you heard the same? Is having a very small tumor in the lymph node channel worse than having a positive lymph node?  Yes it is something I dwell on.

Denise2730

Yes, I am falling apart a little at a time. If one more person says to me "God doesn't give you more than you can handle" I will literally rip their throat out!!!

My husband died of cancer a year ago this past August. I was diagnosed this April, had a DMX in August with reconstruction. Had to move in with my 76 year old mother because of money issues and then Wednesday I parallel parked my car, opened the door without looking and someone practically ripped the driver's side door off. And naturally my insurance lapsed 2 weeks earlier so for now my door is duct taped shut and I climb out the passenger side door. Estimates are between $1500 and $1800 to fix. May as well be $15,000.

Now Christmas is coming and I'm supposed to act cheerful so I don't bring anyone else down. Really?

Yes, I am falling apart and not liking it one bit.

BlueCowgirl

(((Chiluvr)))

Here's some fun stuff I've heard over the past week or so (FWIW, I finished chemo 5 mos ago...):

Me: Why do I have so much pain in my knees?
MO: Probably from the Taxol.
Me: When will it go away?
MO: No idea, maybe never.

Me: What's this new pain right here, in my ribcage?
BS: Very common after radiation. Don't be surprised if it spreads or worsens.
Me: When will it go away?
BS: No idea, maybe never.

WTF??? Minor I guess in the grand scheme of things but "maybe never" is no fun to hear.

Outfield, sorry I missed your earlier questions...I have no earthly idea WHY I was up at 5:14am on Nov 29. Maybe the walrus was posting for me? Definitely not an early riser...But I have the new nighttime bathroom pee thing going on too, when Ambien is not involved. I am posting now because I fell asleep at 6pm, woke up again at 2am, and can't fall back asleep. Sigh. I feel like I am 38 going on 90. And hey - hopefully *you* are just peeing that LE out (probably not meant to be funny but cracked me up) - that would be awesome. Definitely worth getting up in the cold for that!

BlueCowgirl

LOL...Outfield...after editing misspells in above post, it now says my Nov 29 post was at 11:14am. Funny, I don't remember writing that post at all, was really thinking it was the walrus which would have made sense at 5:14am and wondering if he is, um, a bit of a perv who wants to see us all topless

jackboo09

Hi Jennyboog

Sorry to hear of your aches and pains. Don't think that you are just complaining. Anyone who has been through this deal knows that we face physical and psychological difficulties on a daily basis. However, my story might just reassure you.

I was diagnosed in Feb 2011 age 40. I had a lumpectomy 13 days later. Initially I recovered well from the operation, but as the weeks passed my anxiety began to build. In April I went on holiday for a week with my husband and 2 children (10 & 8). Although the break was lovely, I was suffering from hip pain and general aches and pains. I was convinced that the cancer had spread before I had even started my chemo tch regime. 

On return from hols, I convinced my onco to order a bone scan which he did reluctantly. It was clear and I started tch on May 5th. My point is lots of factors could be causing your pain. I remember having that funny jaw ache thing too. Im now sure that tx, anxiety and SE are powerful culprits of our troubles . Obviously go on your instincts. I often felt better when I rang my clinic for advice. It helps to talk to people who do understand, rather than close family and friends.

Finally, I had herceptin number 11 yesterday. 7 to go! I figure I am likely to be achy for a while yet. Hope this helps. Wishing you all the best from a cold, blowy England!!!

Liz 

mumito

How come our rad oncs never tell us about SE's years down the road like increasing ribpain and possible artery damage. I went from a 49yearold no pills to a 52year old junkie popping daily Coversyl,Nexium,Tamox and Meloxicam

Anonymous

How interesting that Taxol can cause joint/knee pain - I have had reumatoid arthritis since I was six and was feeling bizarrely well (arthritis-wise) during the whole chemo thing until a week ago, when my knees suddenly swelled up (so much that I can barely walk).  I've got 2 kids ages 12 and 10 and I walk the 10 year old to school everyday... this creates some logistical problems to put it mildly!  I was just assuming that the swollen knees were from the arthritis, but perhaps it was the Taxol?  Thanks for the tip - I'll ask my oncologist, not that it sounds like there's much to do about it...

I was also laughing - perhaps that's not the right word, but laughing in commiseration - at other people on here complaining about the problems of other people needing them to be strong. I try to keep it together mainly for the sake of my kids and I guess I'm pretty successful at it since my husband's family constantly sends me encouraging emails praising my strength in the face of adversity which really is just self-serving.  If I'm so strong, I don't need help (for example with taking the kids to school), which makes it much easier for them to tralala off and take lovely holidays and drink champagne.  Do I sound bitter?  You should know my inlaws... Few people can understand this until they go through it themselves and naturally I don't want them to have to know, but I really wish they'd stop with all the "I admire you so much" nonsense.  Some days I'm strong, some days I'm not, and on the days I'm not well I don't want to have to feel guilty, like I'm letting someone down or embarrassing myself.  My mother-in-law apparently lights a candle for me every day (not that she's religious) which she seems to think fulfills her duty.  Isn't that morbid?  I'm not dead!

Ohh this turned into a bit of a rant.  

Hope everyone out there is well.

BlueCowgirl

Big hugs to everyone dealing with all the aches and pains when we though they were over.

Question: the "Snap/crackle/pop" (best way I can think to describe it) in my lower back that I got from Neulasta shots has returned as of the last few days. Less painful than the first time around, but same type of pain/same area/same feeling. FWIW, 6+ mo since my last Taxol, and return of the symptom was just this week. Anyone else dealing/dealt w this?

jennyboog

Sorry to hear about your knee Lucy, I had arthitis in my knee before BC also and chemo has made it worse.  That is hilarious about your MIL, my MIL is "interesting" too.  Me and my mom were talking the other day and I was talking about how I don't know what to do about going back to work or not and what to do.  She said, I wish you would stop letting BC determine your life and just move on.  I said, that's my wish too.  When I type it out it sounds like she was mean about it, she wasn't and I understand what she was saying and they mean well but still....they don't get it.

@blue....I was having lower back pain but I've been seeing a chiropractor and it's better.  Going to him is the only thing I've done different so, I feel like he has helped me.  I still have some ache once in a while but nothing like before.

Anonymous

Jennyboog, I have TWO MIL - oh lucky me! - and the other one is even worse than the one who lights candles and drinks champagne.  At least she lights the candles... no they don't understand - I get comments like "Really, that's still going on? I'd have thought that'd be over by now" as if anyone would choose to have chemo last this long.  Not that they mean that, they don't, but really people, think before you speak...  In my new state of post-cancer loose mouth I might just tell them what I'm thinking and there's no point.  No one will be happer if I get cross.  So just smile...

@Kennylynne, the radiation really isn't so bad, in my case at least.  Compared to the chemo it's a piece of cake! It doesn't hurt, it's like you're getting an MRI or a scan. I use a cream that helps with the redness and softens the skin, which helps.  It just takes a LOT of time out of your day, getting to the clinic, waiting, going home, and I can never seem to schedule them when I want them.  The staff at the clinic thinks I'm a pain because I'm always wanting different hours than those assigned, but how can they not understand?  I've got 2 kids that need to be taken here and there, a mass of other appointments with various med professionals not to mention chemo to do and recover from,  (and a dog that needs to be walked!).  It's not easy making it all fit in and my poor husband... 

BlueCowgirl

Jenny, I have considered it, and afraid of going to a new chiro...I trust mine at home with my life, and we've had a great relationship for years...Maybe I should call him and see if he knows anyone to recommend on this side of the country. I am also terrified about bone mets...getting an adjustment and having spinal fractures. Irrational/paranoid? Probably. But still in my mind. Glad to hear chiro has given you relief. Have you tried acupuncture for your knees? I haven't, but it has worked wonders for my arthritic neck.

One good thing about being divorced is no more evil MIL! Mine was SCARY.

nora_az

I love my MIL!!!  I must be weird eh?

SharonMH

Hi  Nora, I also love my MIL. She had Breast Cancer 20+  years ago and she is doing great. Guess I can learn to live with my aches and pains. SharonH

Reality

Lucy - your schedule sounds like mine! My children are adults, now, but I very much involved in the daily care of my grandchildren, my pets and my children's pets. Some mornings I have to ask their parents to help me with the morning routine, but, I am glad I have the routine as I am not working outside my home. Fighting cancer is definitely a full-time job.

Hats off to those of you who have young children, a husband, and work! I just do not know how you do it!  

Reality

;;;;duh to me - must be too early for my brain and fingers to connect....I meant to type that I AM very much involved....

Denise2730

I keep waking up each morning hoping I will feel better. Hoping that today I will feel some joy in my life, something to look forward to but it's not happening. Is it the Femara, PTSD? I feel like I just want to crawl into a closet and stay there for a very long time.

Kay_G

Please let your onc know how you are feeling. You can't keep that up. Some women are really helped by an antidepressant drug. I am sure you don't want to add another med, but you really need to make sure that you do something about how you're feeling. It shouldn't be like that for any of us. Hugs.

jennyboog

Blue...I am doing accupuncture right now too, my chiro does it.  I'm not sure if I'm getting anything from it, I feel overall better but not sure if it's the adjustments or accupuncture.  I'm nervous about fracture thing too and love my chiro. dr too.

For the one's who love your MIL's ya'll must have good one's

Shrek4

I know I was not stage III but this thread caught my eye in the "active" section.

I have been kind of down in the last month and a half. I guess it finally dawned on me that I will never, ever be like I was before all this journey started.

I have permanent, chronic back pain to the muscles in my back and the area the LD muscles were harvested. I have permanent pain on my lower ribs that has been on since I had the flu and coughed a lot in January of this year. My right shoulder blade has "ants" and is hurting all the time. I lost about 60% of the strength in my arms and hands.

The chemo was very painful for me (joints, hips and lower back pain). I know that was a year ago, but I still get those pains from time to time.

I was on Arimidex at the beginning of the year and the pains I was getting were so great my drs almost got me to be tested for fibromyalgia. Also had issues with my hands, especially the thumb, couldn't do any pinching motion. Very uncalled for for someone who is an artist and paints and sculpts. They switched me to Aromasin, a little less pains and my hands now are better, I still have issues when trying to climb stairs, I get a kind of very painful cramps in my hips and I can barely stand up when that happens, but I can't sit either, it's so painful. I can't walk for long distances, heck, I can't even drive for long distances. I used to walk for over 10 miles at a time, and back in Romania I used to live at the 8th floor of a building, and unless I was carrying heavy grocery bags, I would always take the stairs not the elevator, and wouldn't even have to catch my brath on the way.

I can't fall asleep, and if I do fall asleep I wake up several times a night to go pee. The other things is that in the last year or so I also have a type of weird anxiety an panic attack, I am afraid I will die in my sleep, so the moment I am almost asleep the thought percolates in my mind "in I fall asleep I'll die" and I wake up right away and can't get in the sleepy mode again. Where this came from I have no idea.

I started snoring (yes, snoring) horrendously, so bad that sometimes I wake myself up. How sexy!

I never had heartburn before chemo. I have lots of it after chemo. So bad that I need to take some Maalox before going to bed and must not eat anything at least 2-3 hours before bed otherwise I can feel acid reflux almost up to my mouth a few minutes after I lay down.

No matter what I do, I don't seem to be able to lose weight at a good rate. Maybe a few pounds in a month and if I let myself go and eat a few chocolates it's all back.

My memory is terrible (the short term memory especially). sometimes I forget words. I used to be able to recall what someone said and the clothing they wore up to the last stitch in a convo w ehad 20-30 years ago. Not anymore. This is why I am sure I forgot to mention lots of things here.

I feel like this journey aged me by 30-40 years. when it all started I was a 48 years old feeling and looking like a 30 years old. Now I am a 50 years old looking (by what my friends say) 40 and feeling 90.

weesa

Go get evaluated for sleep apnea and hopefuly get a c-pap.

Shrek4

I would not be able to sleep with a cpap. I am a very light sleeper, I can't even have a clock, a fan or an air humidifier in the bedroom. I even wake up every time the heat kicks in. If I indeed have sleep apnea (which I can't tell, as my boyfriend is still deployed so he's not here to tell me) - then I'd probably have to have that surgery done whre they remove some of the tisue in the back of your throat. But I do not wake up feeling like I'm suffocating. It's just right before Ifully fall asleep I start snoring and that wakes me up and makes me unable to fall asleep.

thefuzzylemon

Day....I'm with ya girl....I'm a frickin mess after all this crap. To add to pains, depression, anxiety, nausea, memory loss...the other shit I can't remember right now....I have reversing gums as a side effect from rads. I'm not sure SE's ever stop!!!

step into Fuzzys Romp Room....I opened that up for Freedom to #@$%&"...this thread is great too but I feel like I complain too much...

Shrek4

To be honest I am not sure I even understand what that thread is about.

jennyboog

@day....I could have wrote that myself.  I was the same way, felt in perfect health and mind before BC, I had stresses from work but other than that I was good.  I feel like a 70 year old now...in fact a 70 yr old might feel better!

@flemon...You complain all you want here, we need a place to let it all out.  It's exhausting acting tough and fine all the time.

Reality

Jenny - I feel the same way! I used to feel that I was very healthy. Now I no longer have enthusiasm for much at all. I just go through the motions and look forward to naptime or bedtime, so I can escape the world of cancer for awhile. I used to just let it go, but now, when people say, "Oh, when you get well you can......(whatever)", I shut them up by explaining that I will never be well again - maybe physically (I doubt it), but definitely not mentally. Some of those people avoid me now when they see me in my small town - I don't care - I rather not talk about my health and my plans with them anyway. (Sorry I am being negative - following rads, I will participate in a Research Study I was "invited" to join. They want me as a subject as my tumor had an "incomplete response to neoadjuvant chemo". They want to try oral chemo to see if it "prevents recurrence". They assure me that similar studies have not harmed anyone, but have also not prevented recurrence....oh well, might as well give it a try.