Starting Chemo, November 2013 Group

Wren, Virginia, Ellen, Quirky:

Thank you so much for your support and kind words. Just reading them, makes me feel much better.

@$) out of cancer! I find this situation to be like trench warfare. You just have to sit there feeling crapy enduring the elements, clean your gun and WAIT!

It's hard to be brave just waiting for the fight. It can get into your head, it does a job on your psyche. Right now I can't see through the fog.

However, The Field Marshall knows why I am stuck in the trenches. I can, at this point, only guess His motives behind all this. One day I hope I will be able to understand WHY.

Well, in the meantime I just have to sit low, stare at the enemy and wait...

Gayle: I am reading your post while tears are pouring down my face. I am grateful for your wisdom.

Took our granddaughters to an indoor Christmas display today. Santa was being cute.

Amazon, you will get there. It must be hard to have things postponed so much, but you must heal before you get on the bus. It would probably be much worse if you didn't. Your time will come, then we'll all be here to help you cope. In the mean time, cry, scream, fall on the floor and kick your heels. Watch you favorite funny movie. Do what ever it takes to try to pull yourself out of the funk.

Gayle, maybe your chemo isn't strictly 'medically' necessary, but it seems to be necessary for your emotional well being and that can be just as important as the medical part. If, heaven forbid, something should pop up in the future, you won't waste precious energy playing the what if game. You'll know that you did everything you could. I'm impressed that you have taken the hard road. Don't keep second guessing your choice. Something led you to it, believe that that something was right, get it done, get on with life.

(((Gayle)))~your words really struck me, as do so many of the thoughts and words posted here.

I can so relate to how you are feeling.  I am trying to be brave and stoic, as I have been MY ENTIRE LIFE but when alone, I do lots and lots of crying.  I've had so much adversity in my life but this battle is hard.  I, too am so afraid...afraid of what the future is going to bring.  People tell me "I must live in the moment" but that is so hard for me to do.

Additionally, since moving here to Michigan from New York City, I have been very very lonely and isolated.  Due to working adjunct at a local college, I have not developed work friendships.  I left many good friends in New York City 'cause I lived and worked there for nearly 13 years.  I have only one sibling, an older sister and she is very critical of me...she has loads of problems.  My sister, as well as all our family are in the mid-Atlantic region (mainly New Jersey).  Most of my "extended" family reside in Rhode Island, where I grew up.  So, in a nutshell, I have little support here in Michigan aside from my husband, John (who can only take so much) and the staff at the Cancer Center.  I did sign with a Cancer Coach with the American Cancer Society but we talk sporadically.

Anyhow, this website makes me feel less alone and less lonely.  The women here are incredible, they really are.  We are here for you, Gayle.  I think your intuition to do what you are doing for yourself is the CORRECT thing to do, even in the face of resistance.  I've had TONS of doubt about stuff.  I think it is part of this crazy process.  Go with your gut instincts.

One way to continue to this chemo thread is to start a closed,private group on Facebook.  I am a member of two such groups who originated on the BCO.  Both groups have had meet ups and continue to support those who are in those groups.

Just remember, we leave no one behind......... so if you aren't as far along with through chemoland, you will not be left behind here.  There will always be someone here to continue support you.

Amazon, Ellen, Paulette, Gayle...my thoughts are with you each.

Thank you, Gayle, for the kind words you shared. I think many of us connected to what you said so well. So, all I can add is "Yeah, what Gayle said!"

Had a great weekend, despite the cruddy winter weather...I am so over snow on December 26th. My DD came home for the weekend while my almost-hubby cut and buzzed my hair. The sound of the cutting got me, but I don't scare myself in the mirror as much as I thought I would. But you were all with me in spirit, which definitely helped!

My temp always runs low...97.5-ish. 100.5 would be a pretty high fever for me.

I would gladly "do" Facebook with y'all...after chemo, I have a surgery to contend with.

Gayle, one of the hardest parts for me in this BC journey is that there are so many treatment options. My BC left it up to me to decide if I wanted a lumpectomy with rads and possible chemo or a UMX with possible chemo. Went with the former and now have to either do a significant re-excision to get the multi-focal IDC that was left behind and then rads or do an MX (one or both...also up to me). And I'm kinda tired of it all, truth be told. I was diagnosed in July and had 3+ months of additional tests before my surgery! then surgery! recovery! chemo! more surgery! etc. So, what I'm rather inelegantly trying to say is I'm proud of you for making a treatment plan that made sense to you. Hurrah to you for having the strength and resiliency to know what you needed.

Weird question for the group, it may seem, but if you don't mind me asking...what's your blood type? I'm specifically curios to know how many "A's" we have.

Good luck tomorrow to those heading out for an infusion...and I hope everyone who is having SE's gets some relief and improvement.

Hugs all around!

Chaille

Everyone here is so brave, even when we have our weepy moments.

Gayle, thank you for your words.

Amazon, we will not leave you behind. We all should stick together even if some have a different treatment after chemo. I will be having rads in march for 6 and a half weeks.

A private Facebook group is an excellent idea.

Tonilee, I understand,how you feel up there in Michigan. I am up here in upstate New York and my family is in then New York city area. It does get lonely. I do have my husband and kids, but I don't want to share my fears and anxiety with my kids. They are struggling enough with this already. I also don't want to bombard my husband too much. I have shied away from interacting with my work friends. I don't think they look at me the same way. Of course, this is me, not them. I know I have issues to work out about this, but imchad only focus on the chemo now. I thought about a counselor from the American cancer society. Are you getting anything out of it?

Hang in there ladies, you are a special group and we will get through this.

Bec65- Next up for me is Taxol and Herceptin weekly for 3 months.

@Audra : agree with Ellen; it's probably scar tissue, or something like that. Definitely get it checked to be sure and so that its presence, size, and characteristics will be known for the future, but I don't think I'd worry about it too much just yet.

I am up at a little past 7, grumbling.

Here I was, congratulating myself that I was going to have a great week. My side effects are down to just a little tiredness (and a whole lot of napping,) my husband ordered me a snazzy new gaming computer that should be coming in today, I ordered myself one of those tables like they have in hospitals that swing over a bed so that I can use a comfy position on my bed as my desk for a little while til we get the other bedroom renovated and I have an actual desk again, and said table should also be delivered today. My next chemo isn't scheduled til the day after Christmas, so I had all this week and part of next week (wow!) to feel good, plus I'd be feeling good (and hungry lol) for Christmas itself.

And...every now and then the thought would creep in "Two treatments down and no period...maybe it's stopped, maybe I'll never have those cramps, that aggravation again...." I've been so enthused about that that it could even cheer me up on my "crash" days.

Then I get up this morning to pee and what do I see? PINK! Oh I let out a string of cuss words that even made my dog take a few steps back up the hallway and just sit down and look at me disapprovingly. DAMMIT! I do not want my period! Argh! Grrrr! And especially not today! Crap! I'd also told my husband last night that I was sort of in the mood for a little something-something tonight, so plan for it. So much for that. Crappity crap crap crap.

I know, it's a little thing, but dammit. Why today? I swear I believe I am going to die at 115 years old, still getting my period like clockwork. Blah.

Oh well. At least we have plenty of Ibuprofen. Sigh.

Hi everyone~not more than an hour of sleep for me last night...worries.

Audra, I agree with others that it is unlikely that you've located another mass or tumor at this point in the journey. From my understanding per my surgeon and my MO, it can take most cancer cells years to organize and grow...most cancers except the most aggressive types.  The lump is likely scarring or something else based on all the surgery & reconstruction.  But of course, call your MO in the morning and follow his/her advice.  Will keep you in my thoughts.

I wish I could just say to y'all "Stop worrying!" and wave a magic wand and make you actually stop worrying.

I won't say that I never worry, because I do, and sometimes I think a little too hard about all of it and get freaked out, scared, depressed, whatever, but ... Well, all I can do, I guess is try and share the things I do to try and make myself feel better. They don't all work all the time, but generally SOMETHING helps.

#1. Go look at myself in the bathroom mirror and tell myself (out loud, too) all the things I would tell my best friend if SHE was worrying about something that didn't need worrying about yet. "Chill out, silly girl. There is no point in spending time on bad thoughts when we COULD be spending time on GOOD thoughts. SO let's have good thoughts...what color should we paint this bathroom? What would be tasty for dinner tonight? How bout we get that cobweb out of the corner, hmmm? DO something productive. Stop worrying about unknowns!"

#2. Distract myself ....FORCE myself to start thinking about somethign else, and the best way to do that is to DO something else. Do some laundry. Read a forum that has NOTHING to do with any of this health-related stuff. Play with my dog! (That one *always* helps.) Do some work (I work at home.) Take a nap---and use the falling asleep time to direct myself into thinking about something else; tell myself a story, or pretend I am telling a story about something that happened a long time ago (a good something) to someone else...even pretend they ask questions about it and I answer them. Sounds silly, but it really re-directs the mind and lets me get that nap--or at least makes me feel better. I think there is a REASON we learn to pretend and fantasize when we are kids: Because it becomes a valuable life skill once we are older.

#3. We all do that Dr. Google thing that we shouldn't, but occasionally we find---especially on these boards---things on the internet that make our own situations seem much more hopeful. I've BOOKMARKED those posts and pages as I've found them, and if I start feeling down or scared or worried, I go read them again, to remind myself that many times things turn out PERFECTLY FINE.

#4. Watch HGTV and argue (out loud) with the picky home buyers and people who are having their houses renovated. Take out all my grump and bad mood on those people who can't hear me and don't care what I think anyway. Usually I can make myself start giggling that way, and you CANNOT be depressed and giggle at the same time. Not really.

#5. Read some inspirational quotes and maybe allow myself to cry a little. Sometimes the emotion pool just needs to be drained a little bit.

#6. Bake something. Especially homemade bread (we have a nifty breadmaker.) The smell of homemade bread baking is an instant comforter.

#7. Focus on something that I have to be very analytical about, or something that must be *counted.* I have, in a desperate moment, even been known to count the tiles on my ceiling (and no cheating by counting two sides and multiplying, either.) I don't need to know how many tiles there are, but if I have to focus on something like that, I can't focus on feeling like a silly worrying woman. And somehow doing that always leads my thoughts to something else like gee it would be cool if I could get my husband to paint some art on sme of those ceiling tiles which leads to what sort of art I'd like and.... so on.

#8. Learn to make those thoughts STOP as soon as they start by telling myself (out loud!) STOP THAT! and picturing a giant red stop sign....and then forcing myself to try one of the previous solutions. Immediately. Repeat until it works. It does work, if I'm persistent enough. Sometmes I might have to pull out that imaginary stop sign several times before I can move on, but if I stick with it, it WORKS.

#9. If trying to go to sleep and having bad thoughts instead, just GET UP. DO something else, read something, watch something, clean something, play a game, anything. Just don't lay in bed trying to sleep and having bad thoughts instead. Sleep will come once I get the mind calmed down.

These are some of MY solutions. DO some of you have some others? I can always add more to my repertoire....cuz you know, regardless of cancer or chemo or all the other things that happen or can happen to us, the reality is that right NOW we are alive, right NOW we can try to choose to be as happy as possible, and whether I'm gonna live to be 115 years old and die of frustration because menopause won't come, or whether I'm going to die tomorrow of a very unexpected heart attack, what I *want* is to be as happy as I can possibly be for every moment that I have. I'm gonna die eventually, but....NOT TODAY. Today is mine, and I plan to enjoy it if I can.

Aw Bec, hugs to you honey! I learned the hard after kicking out my wretched ex that holidays come loaded with expectations we just can't live up to in circumstances like these. I highly recommend you do at least a few new or different things to eliminate that pressure and distress. Plan on this being different and it will distress you less.

Lisa you're awsome. I enjoy reading your posts.

  I would be interested the Facebook group.

Audra it maybe scar tissue call your MO.   It must have been a nightmare to find the lump in the middle of the night and not be able to do anything for several hours.

@ and follow them.

Have any of you been doing exercises to wars off lymphedema? I have been doing an exercise my BS gave me and now I have swelling around my elbow.

My MO doesn't think it is lymphedema because he says that usually starts in the fingers. I was panicking because I was sure it is a swollen lymph node that they missed during surgey. MO says cancer isn't squishy and this is squishy so he ordered an ultrasound. Crap, crap , crap!

Back to the tests and waiting for results! I don't need this on top of everything else!

Ellen, lisa137, tonilee, and all-

Thank you soooo much!  I will definitely try all of those and the stop sign image is what I need to do too, or maybe a hit over the head with baseball bat!  I was definitely in freak out mode and my poor husband was soothing me and sitting quietly and asking what to do, as I was ranting, pacing, crying, and generally had lost it. 

Anyhow called the nurse and got in early this am to see oncologist.  He talked with us for a long time about worry and being positive and how I need to live my life and not let cancer live my life or control it.....he then said, he had never, in 16 years seen a cancer lump appear during chemo in a few days...he then examined me and said, oh that's a suture,  and I said so you're sure it doesn't feel like cancer?  Yes, he said, then to prove it's nothing let's get you a sonogram and it will show a suture with granulation ...he said sometimes they keep resurfacing if they don't absorb and might need removed at later date...So just to be positive/SHOW I can in front of the DR and nurse they had no openings at hospital today only tomorrow, but she said 'I know you're so anxious so you could go to Lewisville hospital today'...just to show them as I do not like being labeled 'anxious' (even when I am now) I said I will do the sonogram tomorrow...HA! 

Now that I'm at home I'm regretting that a little but I just need to have some faith and quit this downward spiraling evil thoughts thing...I thought I had it under control and whammo, every time something new or scary I freak out now....NEVER would've used to do that..

I have an appt. with a counselor tomorrow and am looking forward to that as I NEED HELP dealing!  She also hypnotizes I am going to request that if it works faster!  I want on the fast track to getting rid of this fear and anxiety!  I HATE it...I had NEVER had an 'off' blood test, xray, anything my whole life and used to be a nurse, never did I worry when going to any Dr...until this whole thing started last August!  Now the thought of an MRI or scan freaks me out, getting blood drawn, all of it...so I cannot wait to change back to normal and get out of the fear zone!

I am a Christian and BELIEVE too and somehow threw that all out the window in my frenzy only praying after I calmed down a bit....it is awful - I know God loves me but I would be so  disappointed in my child to act this way..!

I appreciate all of your good wishes to me as I was on the crazy train and flipping my lid yesterday and this morning.  I am feeling OK now and hope to report a great ultrasound report tomorrow!

yay!