Time for more scanxiety

I went through the time line and the good news is that it has almost been a year since I was diagnosed with a return of BC.  The bad news is it is almost time to go through all the scans again.  That creates a tremendous amount of anxiety....which we have dubbed scanxiety.  It will have been a year since my bone scan so I will have to have another one very soon.  Same for the CT but since we did one in September for a possible pulmonary embolism after surgery we may wait on that one.   I see my oncologist on 12/18/12 and we will decide when to do the scans.  The bone is where the most folks get metastases if they get them at all.  That's the one I am most concerned with.  Well also the lung.  That would suck to get it in my lung(s).
Here's hoping for a calm Christmas season and a very Happy New Year!

I saw beauty.

We went to the Grand Canyon and there are no words to express the Beauty that I saw there.  It made me know how small I am.

Oh well, HELL!

Every time I start feeling like I might be coming out of the funk something happens to pull me back in.
I am still having the headaches but I THINK that it is coming from me gritting my teeth at night.  So I need to get some mouth guards to see if that will help.  Now my shoulder has started bothering me.  It's always something.  And now every twinge is the cancer coming back!
The shoulder is on the right (side of BC) and it aches so bad, especially in the morning.  It seems to dwindle in pain during the day but every day for the last 4-5 days it has hurt so bad that I have had to move my mouse pad to the left side and let the shoulder just hang. Hard to type or write this way.
I am scheduled to see my onc. in December and in January it will have been a year since a bone scan so I think I will request he schedule one for me in January.  If this continues though I am going to have to put my arm in a sling.  Two week rule now in affect.  If it lasts that long then it probably means something is really wrong.
I am 99% sure it is not BC...it's that 1% that bothers me.

Time

It may be a cliche' but I am coming around to believe that "Time really does heal all wounds."

What is normal?

I know for anybody who reads this blog regularly they know that I repeat myself.  I try not to do this but sometimes I do anyway.  So for that I apologize.  I think I repeat myself because this is all I am feeling now-a-days.  Anyway, here goes.
I need a change so badly.  Just a change of scenery may make the biggest difference.  And I don't mean a vacation.  I mean a change.  And in addition to that I feel so non-normal.  I don't know how to feel normal any more.  I feel like an alien in a bunch of regular folks.  But when I come across a BC sister I feel so akin to them.  Love for them flows through me.  They understand me.  They are aliens too.  None of us know normal anymore.  There is no new normal.  Nothing is normal ever again.
I thought after the first time with BC that as the years went by I would feel more normal  and I think I did.  And then I was blindsided. So I feel like this time I will be "Fool me once shame on you, fool me twice shame on me".  I'll never believe in normal again.  I'll never believe that everything will be OK.  I will forever look over my shoulder waiting for the BEAST to rear its ugly head at me.
I hate it.  But I don't know how to change it.  I just know that if I don't get a change in scenery soon I may go more nuts than I already am.  I know....hard to believe but it could happen.

What?

So I hadn't heard from my surgeon at UNC since March and he had told me that he wanted to see me after 6 months.  So I emailed him and the nurse liaison and heard back from her.  This is what Delma said, "Well, the good news is that we clearly consider you cured and a survivor in surveillance.  There is no indication for scans or lab work during surveillance for breast cancer that has been cured."
WHAT???  Is she kidding me?  I was HOT!  And within a few minutes the doctor had emailed her and said, "Delma- I usually like to see patients back for surveillance at least for a year." 
She has lost her mind.  If it was the first time for BC then MAYBE he wouldn't want to see me but this is the 2nd time!  My oncologist said at the very least I should be scanned every 4-6 months for the next 3 years.  People like Delma should really know what they are talking about before they say something.
And it goes on.
 

All clear!

When I saw my oncologist, Dr. Huffman, recently he and I discussed that I am an emotional mess.  I mentioned this before.  He listened to me and my symptoms and we did a CT scan and a brain scan.  I assume that in the next couple of months I will get a bone scan also.  Anyway, both the CT scan and brain scan were normal.  No evidence of disease (NED)!  Great news!
So what is wrong with me?  I am very frustrated.  Sigh.

What's been happening.

I had a breast revision on 9/18/12.  My new foobs are beautiful!  They are exactly what I wanted.  My plastic surgeon is a genius!
I finally saw my oncologist and gave him a list of symptoms I have been having and from that and seeing my plastic surgeon I had a CT scan and am scheduled for a brain scan next week.  My CT scan came back OK but with "mild cardiomegaly".  After looking this up I am convinced that this OR hyperthyroidism could be my problem.
Anyway Dr. Huffman, my oncologist, raised my anti-depressant from 10mg to 20mg in hopes that it will improve my mood.  We'll see.  He also listened to me and told me why this time has been so much harder on me than last time.  He reminded me that so many women get BC that the first time I was "part of the crowd" or "one of the many".  But this time....recurrence is NOT the norm....it doesn't happen to all the women and it means that I will have to look over my shoulder for the rest of my life.  Kinda put it into perspective for me.  If this is gonna be the new normal then maybe I can live with it.  Hmmm?
So due to the daily headaches and the vertigo he is getting me a brain MRI.  I've never had one of those.  Do you think they will at the very least find a brain?
Will report back to the class later.

Stage 2

Next week is Stage 2 in my reconstruction.  It is a day surgery where they will perform liposuction on the parts of my breasts that are not symmetrical.  They may also tackle some fat necrosis.  I will be  in and out that day.   I am looking forward to getting the hamburger buns out from underneath my arms.  And he will raise the left one so that it is aligned with the right one.  May be the first time in my life that they will be symmetrical.  Weird.
I am doing better, overall, but still have more bad days than good.  I also have an appointment with my oncologist next week and I will talk to him about feeling bad, headaches, hand tremors, etc.  All the things that are freaking me out and the fact that I stay freaked out all the time now.  I am hoping he can help.
I wonder if I am depressed because I feel bad all the time or if I feel bad all the time because I am depressed.  Chicken or the egg?

I don't care for antibiotics

I have been saddled with a side effect of the antibiotics that were given to me so I have stopped taking them.  I guess I need to go back to the doctor but I doubt I will unless symptoms of infection return.  They made me itch so bad.  I bet I can count on one hand how many rounds of antibiotics I have taken in my life.
So I have to hope that my infection....whatever it was....doesn't come back.  I swear if it isn't one thing it's another.  The devil is in the details.

To the doctor I went.

So finally went to the doc this morning.....actually saw a nurse practitioner.  She looked in my ear and said that while it didn't look completely normal...go figure, something with me NOT normal....it didn't look infected either.  She noticed that my face was swollen in front of my ear and said there is definitely some infection there.  So she gave me antibiotics and sent me on my way.
So I get to work and immediately Google "swollen face in front of ear" and find out there are several lymph nodes there.  Hmmmm....so as you can imagine I am thankful that lymph nodes are doing their job BUT....you knew there was a but coming....any swollen lymph node in a cancer survivor is scary.  And with the lethargy and dizziness and headaches....you can hear my brain whirling out scenarios, can't you?  Why do I always go to the dark place?  I didn't do that before.

Headache

I have had a headache for almost 12 days now.  Non-stop headache.  I have been nauseated, dizzy, lethargic and overall unwell.  I was taking Ibuprofen like it was candy.  But I stopped and am now just dealing with the pain.  I don't know if my emotional un-wellness is contributing to my physical un-wellness or the other way around.  I generally feel like crap on a stick.  I laid around the house all weekend.  I don't have the energy to clean my house....thank God for my hubby.....and I just don't feel like doing anything.  I am beginning to wonder if I have been bitten by something?

Another BC support group meeting

Now that is more like what a BC support group meeting should be.  There was a speaker and when she was done they went around and everyone talked about their treatment or how they were feeling or that they were having surgery later that week, etc.  So I talked.  And cried.  And felt stupid.  And felt like a Debbie Downer.  And felt bad for the two ladies there that are just getting ready to start treatment or have surgery.  I probably scared them to death.  And afterwards I had several women come up to me and hug me and give me sympathy and not tell me that it will "all be alright" but rather tell me that they are there for me and understand me and that's its OK to feel the way I feel.  They were so kind.  And as always you hear of someone who has it worse.  And it helps put things into perspective.....until you leave...
I am so tired.  I have said it so many times but I can't tell you how tired I am.  I need a change in job, house, scenery, something.  Tom feels he needs a change too.  It's not a great time for us to move as both our mothers are getting up in years....his more than mine.  However, each of them would have support from another sibling if we did move away.  I just know something needs to change for me in some avenue of my life.  Then I hope I can stop being so tired....maybe...

Trying again

I will attend another BC support group meeting tonight.  I'll report back to the class about this one.  Hope it goes better than the last one.

Fear of Recurrence

If a fear of recurrence becomes overwhelming or begins to interfere with your quality of life, a member of your health care team can help. The following are signs that fears about cancer may be a problem:

• Any minor aches, coughs or headaches bring a strong fear that cancer has recurred.
• There is an unwillingness to rebuild and return to a full life due to fears.
• Recurrent is a constant worry.
• Thoughts about cancer recurring happen before you go to bed at night and the first thing in the morning.
• There are long-term sleeping problems (more than a few weeks).
• Little or no appetite continues for days.
• There is no desire to spend time with friends.
• There is no interest in continuing usual routines.
• There is an inability to concentrate at school or work.

If you experience two or more of these feelings or are depressed for more than two to three weeks, it is important to speak with one of your Health care providers.There are treatments and medications that may help you deal with these issues.

Oh, if only I could lose my appetite!  So, I have 6 of these things....guess that means I need to seek professional help!  I should have been doing that for years!  LOL!

In all sincerity I have decided to try a different BC support group and if that doesn't do it for me then I will have to find a professional.  And it needs to happen before I get fired as I have next to no desire to do anything....at work or at home.  Please say a prayer that my head gets right soon!

My first breast cancer support meeting

I’m not sure what I expected when I attended my first breast cancer support group but I don’t think that was it.  I did like the devotional and the opening prayer.  I did like meeting new people that have been, or are going, through the same things I have been through.  I did like the lady in the back of the room that smiled the entire time as she updated the group on her Stage IV diagnosis and that even though she just started getting her hair back it will be gone again soon as she starts her 3^rd set of chemo.  She inspired me. 

Do you sense a “but” coming?  While everyone was nice I felt like most of the ladies were there to discuss the upcoming banquet and BC conference and yard sale.  It seemed if you weren’t going through treatment then you didn’t speak.  And no one spoke of how they were feeling, handling things (other than the physical demands of chemo), how their spouses are handling things, etc.

Where’s the emotional support?  I could get what they had going on at any group meeting where fundraising is discussed.  It saddened me that there were 18-20 women in the room there was no support.  I take that back……when someone mentioned that they had a scan coming up and they were anxious about it the moderator told everyone to pray for her. 

I don’t know if I will go back again or not.  I do know that I’d like to go to a support group meeting where I can feel the emotional support and not all the fundraising.

Just my 2 cents.

Self Fulfilling Prophecy

I’ve often wondered, as many of us have, what caused me to get cancer?  And then, what caused me to get it again?  I wondered if women that had cancer and then immediately moved on from it and were able to put it out of their minds ever had to deal with it again? 

The first time I was diagnosed I took it in stride.  “Ok, this happens to some folks but I will beat it and not have to worry about it again.  After all, the odds are in my favor.”  And then after treatment I waffled.  “Maybe it will come back?  What’s that pain?  Was it there yesterday?   My hip hurts now….I must have bone mets!”  And on and on.  And then after a while cancer left my mind….slowly but surely.  The farther out from diagnosis I got the better I felt.  “OK, that was my bump in the road but all is good now.”

And then….BAM!  Again…diagnosed again!  And now, even though treatment is over I still think about cancer all day, every day.

I believe that God hears all prayers.  I believe that God doesn’t MAKE bad things happen.  I believe that because God gave us free will that he ALLOWS bad things to happen.  I believe in miracles.  I have faith but I also know that bad things happen to good people.

So, is my cancer a self-fulfilling prophecy?  I had, for years, said that I thought breast cancer was such an epidemic that I knew I would get it sooner or later.  Did I wish it on myself?  And then, because I thought of it so often after the first diagnosis, did I bring it on myself again?  And now, that I am thinking about it all the time again, will it come back again?  Am I completing a self-fulfilling prophecy?

I’d be interested to know how many women that survived their cancer and kept going and put cancer out of their mind….how many still were diagnosed again?  Does a PMA (positive mental attitude) help anything?  The brain is a powerful organ.  Can it keep you safe?  Or can it help you suffer?  Musings of a crazy lady.

Support groups

I just spoke with a woman about attending a BC support group.  Their next meeting will be August 6th.  I'm pretty sure I will attend as I think I need it alot.  I hope it helps.

Canceritis

Signs that you may have CANCERITIS

by Bethany Aronow, MA, LPC

Cancer-what?  Canceritis. You may have finished your cancer treatment. You may be one day out from your diagnosis, or ten years out. If you are a cancer survivor, chances are you will have Canceritis at some point.  It’s common, it won’t be the end of you, but it plays with you and chips away at your peace of mind. No fun! Canceritis is an inflated fear of cancer recurrence.

Let me ask these questions to help you figure out if you are among the masses of survivors who has experienced Canceritis.

Do you worry that every pain you experience now is a sign that the cancer has returned?  Do you wonder if every headache is a sign that the cancer has metastasized to your brain? Even though odds are you have a regular, run-of the mill headache, which by the way, may be more pronounced because of your anxiety (Canceritis).

Do you suffer from “white coat syndrome” every time you have a follow-up with your oncologist?  White coat syndrome is hypertension (elevated blood pressure) caused by anxiety about needing to see your doctor even though you have been fine, and you have no concerns to discuss.  You still can’t help but worry you may be about to hear that the cancer has returned.

Canceritis is real, whether the cancer is or not. It’s driven by genuine fear (rational or irrational) of recurrence. Dr. Jeff Kane, MD has written about Canceritis in his blog, Healthcare As Though People Mattered. Dr. Kane states, “Cancer bedevils everyone who’s had it, and it seems to be permanent.  Sure, every time it happens you get a little more used to it, so a little less anxious, but it persists anyway …  This invisible little mischief-maker rides constantly on your shoulder.”  

There is no clinical diagnosis code for Canceritis, but if you have it you will know it!  Let’s talk about ways to outsmart this demon.

How to quiet Canceritis

Avoid emotional frenzies.  Find and use strategies to manage your anxiety (e.g., meditation, guided imagery, exercise, counseling). When you’re in your doctor’s office and you can just feel your blood pressure rise when the nurse takes out the cuff, take slow, deep breaths. Now picture yourself somewhere you’d rather be.

Recognize your distorted thoughts. Learn how to work with these thoughts so that they don’t get the best of you. Jumping to conclusions is a common cognitive distortion for us.  Dr. David Burns, the author of The Feeling Good Handbook, describes this distortion as “making a negative interpretation even though there are no definitive facts that convincingly support this conclusion.”  Tell yourself, “I have absolutely no facts to make sense of this scary assumption.” Ask yourself, “Really, do I need the added aggravation of banking on what I don’t know if it’s just going to put me in a head spin?” It might help to just focus on the moment. Was your last report good? Ok, celebrate in this milestone that’s yours right now.

Find people to talk to.  Maybe join a support group (in-person or online) or call a cancer hotline and speak with a trained volunteer who’s seen this, heard this, maybe even been there.  Holding it in and letting the thoughts spin inside your head will only heighten your anxiety.  Some counselors actually specialize in psycho-oncology. You may find someone in your area through the International Psycho-Oncology Society http://www.ipos-society.org/about/contact_us.aspx. If they can’t find a practitioner near you, they can provide short-term, over-the-phone counseling at no charge.

Track your symptoms and concerns. By taking this step you will have documentation and facts to share with your doctor.  While there is an excellent chance you’re experiencing a flare-up of Canceritis, it’s important to bear in mind that your symptoms may be a sign that there really is a cancer-related problem. So while you should try not to let these concerns highjack your peace of mind, please do have them investigated. 

Canceritis is a “light-hearted” reference to very real anxiety, it can range from distressing to crippling.  But suffering is optional.

Feeling scared is a normal reaction when you think that cancer may have returned. But how you deal with your thoughts, feelings and responses to that fear IS in your control.

Put Dr. Google aside and run any concerns by your doctor.  Until a medical professional gives you the all-clear, you are just guessing.  If you’re not feeling your best, hopefully you will find it’s just Canceritis paying a call. And you can put it to bed—let your mind rest.

Sources:

Burns, David D., MD. 1989. The Feeling Good Handbook. New York: William Morrow and Company, Inc.

Canceritis, by Jeff Kane, M.D.

Pathology Report

So, I was re-reading my pathology report and saw that I had not 1 but 2 tumors!  Why did no one tell me this?  Although Tom says he thinks he knew.....?  I must have been high....lol.....because I don't remember anyone telling me this.  The first tumor I knew about.  It was 3.2 cm and was just under the nipple and was also in the dermis.  The second tumor was deeper.  It was 1.5 cm and was on the skeletal muscle.  Now I have so many questions?
When any tumor is removed they try to get what are called "margins" around the tumor and these margins need to be disease free.  If they get "clear margins" then one is supposed to think that they are safe.  The first time I got cancer the surgeon's path report showed clear margins.  And this time the clear margins were supposed to come from the fact that all the breast tissue was removed.  But how does one ensure clear margins when the tumor sits on the muscle?  They didn't remove the muscle as far as I can see/feel.
I have requested the surgical operative report so I can see what exactly he did in there.  But I was already freaked out enough.  This information has not helped at all.
Sigh......I hate cancer and everything that it has taken from me.  I am becoming a different person and I don't like me very much now.

The Sisterhood of Pink

I have read that many women that have had breast cancer do not like pink or anything associated with it.  They think that the pink has grown into just another way to make money from the unfortunate pain of others.  Maybe it is.
However, I find that pink makes me immediately understand that woman (or man, if he happens to wear pink) and feel empathy and sympathy for her plight.  It makes me feel a kinship of sorts with her.....another woman who has been through the awfulness and has come out the other side....or is still struggling......or knows someone who is struggling and wants to do something, anything, to help.  Helping could mean as little as wearing pink.
All I know is that when I see a women wearing pink....as I did yesterday....she had a pink shirt, pink shorts, and a pink hat on.....I see another person struggling.  And I feel closer to her.  And I can relate to her.  And she feels like a part of me.
Pink can be good for something.  If only to make us more aware.

Depression

 "Depression is not a sign of weakness.  It's a sign you've been strong for too long." ~unknown

Understanding

If you have been there, no explanation is necessary.  If you have not been there, no explanation is possible.

Mercy

"Have mercy on me, my God, have mercy on me, for in you I take refuge.  I will take refuge in the shadow of your wings until the disaster has passed."  Psalm 57:1

So tired

I am tired. Tired of driving 2 hours a day to work, tired of working, tired of laughing and joking when all I feel like doing is laying in the bed with the covers over my head, tired of hearing about cancer, tired of thinking about cancer.....hell, I'm tired of being me. I am not able to do anything without hearing about cancer....someone new has it, some new drug for it, some new statistic about it.....so tired of it. Here's the latest I read about it: http://thechart.blogs.cnn.com/2012/06/14/are-we-prepared-for-18-million-cancer-survivors/ When will this feeling leave me?

Loss

Everyone has loss in their lives.  So I am not unique.  But since this is my self-indulgent blog I would like to talk about my loss.
In the past 5 years I have experienced quite a bit of loss.  My father-in-law died, my father died, my brother-in-law died, I had chemo which made my lose my hair, I lost part of my breast and then lost both breasts.  Those losses have hurt me deeply.  They were good people as well as good breasts...lol.  When I look at my body I just don't see me anymore.  Someone else is looking at me.....and I don't know her.
And today I lost my wedding band.  I am incredibly sad and still hold out hope that I will find the ring.  It means so much to me.  I can't imagine how I lost it either.  The band is not loose and I know I had it on last night.  God, please let me find that ring.

Sisters from another mother

I lurk on the breastcancer.org forums as I did during my first bout with BC and they helped me so much.  As time went by and I got farther and farther out from that diagnosis and treatment I didn't visit there but every once in a while.  Then when I was diagnosed with BC again I started lurking there again.  It makes me feel like I have folks that truly understand me.  They lift me up when I am down, make me feel like its OK to feel the way I do from time to time, and allow me to lift others also, when I am able.  I feel like they are the only ones that understand how I feel from day to day.
I was able to pay it forward with one of them.  I sent her a jacket with pockets for drains that another woman had sent to me.  I also sent two camisoles with drain pockets.  All I asked her to do was to pay them forward also.
I love those ladies and I don't even know them.  They are my sisters from another mother and I appreciate them so much.

What I think

So I thought I'd start telling myself, when I start feeling sorry for myself, the following:  "Right here, in this moment, I am cancer free."
Then I thought, but how do I really know that?  Then I thought, can any of us really know that?  And then I realized that I can no longer trust my body.  It has failed me.  I don't recognize it anymore.  It's like I'm living inside someone else's body.  And I don't like it or trust it.
This moment.....this moment.....this moment.....what can I do beyond this moment?  Absolutely nothing.
Aaaarrrrgggghhhh!!!!!  I'm seriously losing it.

Tears and fears

This is the only place where I can tell what I truly feel.  And for anybody reading this it must be hard to read.  For that I am sorry.  But I feel I must unburden my soul somewhere.
I just met another woman who is plagued with the beast.  And I am at work so I refuse to cry here.  But I just want to cry.  This is so wrong!  It is an epidemic whose time has come to be fixed!  We have so many smart people in this world and yet 1 in 8 women get the beast and they don't have enough data to kill the beast?
She thanked me for being a "soldier in the fight" and for being "strong".  It is a ruse!  It is a facade!  I am not strong!  Right now I am a self-involved mess!
My faith is still strong.  I know that God has a plan.  And it is better than any plan I can come up with.  And His way is perfect!  And I know that courage is fear that has said its prayers.  And I do pray.  But I pray for the others who deal with the beast....not me.  Am I resigned to death from the beast?  Am I going to be a self fulfilling prophecy?
What is wrong with me?

My new favorite book

Yes, more from the "Dancing in Limbo".

"This is grief, and it is running parallel to our daily life.  When we are grieving, we feel beside life, not really in it.  We eat but do not taste the food; we sleep but not well.  We go through the motions of love and work and play, but we are barely there.  Even worse than feeling half-dead are the silent secret moments when we think we are going crazy.  In grief, feeling crazy is the norm.
Ultimately, our task of survival is to go on about our lives in the full knowledge that we are scarred, visibly and invisibly.  We are mortal, and we do not control our fate.  And with it all, we are infinitely grateful to be alive.  The capacity to grieve our loses is essential to our recovery and to our humanity.  Although that grief feels like hell, it is the heart of limbo and the beginning of our dance."

This book interviews several cancer survivors about their feelings and one gentleman talked about feeling good and strong 27 days out of the month and the other 3 days he felt like death was on his doorstep.  I get this so well.  For the most part I feel good about the fact that I am cancer free NOW and that is all I can really hope for.  But it's those nagging thoughts that creep in and change my focus.

It is awful to feel guilt for surviving and grief for what I have lost.  But everyone has lost something in their lives.  One thing I have learned from this book is that I must, MUST, give myself the time to grieve what has happened.  I have to feel and let it be.  Only then can I start letting it go.

More from "Dancing in Limbo"

"The part that’s really hard to communicate to someone who isn’t a cancer survivor is that on a day-to-day, moment-to-moment basis, you live with the fact that there may be [cancer] cells running around, and the time bomb notion that there may be some cells on the loose; and if it’s not conscious, it’s sub-conscious, but it’s there.  It’s there all the time.”

Even though I am lucky, I have still lost……..”That is the painful truth of survival: luck and loss are intertwined.”

I am going thru what’s called survivor grief.

Dancing in Limbo

I am reading a new book entitled, "Dancing in Limbo".  I knew this was how I was feeling but didn't know how to put it into words.  Here is an excerpt that will allow me to explain the way I feel now after having gone through cancer for the second time.  (I also felt this was the first time.)

"Lost in Limbo - During treatment, our focus is narrow and clear:  obliterate the cancer.  When the job is done, we lose our focus.  Suddenly, cancer no longer defines us - restructuring our time, consuming our energy - and we are at loose ends.  At the same time, all the people who have cared for us go about their business, leaving us to do ours.  We are alone.
As we resume our daily lives, we feel disoriented.  Something is amiss, but we don't know what it is.  Most of us have no enery; some of us are irritable and depressed.  Fears of a recurrence start creeping into our thoughts.  Simultaneously, real life with all its mundane urgency demands our attention.  We are overwhelmed by the smallest things.
......for months I did not want to wake up.  Whatever the day might bring, I did not feel up to it.  I remember wanting to rip the phone from the wall.  Everytime it rang, I felt assaulted.  Someone was wanting something more from me, and I had nothing left to give.
In addition to our disorientation and depression, we begin to experience more anxiety.  Our moods may vacillate between confusion and fear.  Fear of recurrence begin to dominate our thoughts, and we may sometimes feel obsessed with death.  These are the fears we have to hold in check.  Now that we are stronger, they can emerge.
Just when we expected to feel relieved, we don't.   The irony is painful:  we thought that this would be the easy part!  We may assume our feelings are the aftermath of treatment, and in a way we're right, but they have a deeper source.  The reversal of expected feeling states is the hallmark of survivor grief, as yet unrecognized by us.  For the moment, we are lost in limbo.  And we're lost, in large measure, because our defenses are still  in force, keeping us removed from our inner life of thoughts and feelings. 
Survivor's grief is a paradox.  It seems wrong to grieve when we got what we most wanted - another chance at life."

Only makes sense to those who have faced death.  I am a mess.

The New Normal

I listened to a lady yesterday as she told me of her experience with breast cancer and going through chemo.  She asked me when I was going to start chemo and I told her I decided against it this time.  I think she thought I had lost my mind.
I read through breast cancer forums and sometimes post.  I posted that I had decided against chemo this time and received lots of feedback about that being a bad decision.  Who really knows if it is a bad decision or not? 
I read today that post-menopausal women who drink more than 3 alcoholic drinks a week, and are overweight have a 34% higher rate of recurrence.  Oh well.......that seems to be me.  And it came back.  Hmmmmm......something to this?
Since I have refused all additional treatment other than surgery I sit and wait.  My new normal is to wait for "IT" to come back.  I have to say the first time I had cancer I did the same.  And slowly the cancer faded from my mind every minute to only sometimes.  I hope that is what happens this time also.
I told my mom that I am pretty sure that the beast will be what kills me.  I'm not trying to be maudlin....just realistic.  And it's OK because we all have to die of something.  But then I could get hit by the infamous bus tomorrow too.

Strength

I'm sure I have mentioned my husband's sister, Jane, before and how she taught us that people react to your bad news the way you do......if you fall apart then they will too.....and if you stay strong then they will do the same. It is hard to be strong all the time. To be totally truthful.....I am scared. Very scared. I hate feeling that way.

Books

My husband loves music.  He gets so much inspiration from music and truly believes that music is played for our lives....something might come on the radio that he needs to hear at that moment to help him thru his day, etc.  I believe that happens too.  However, I get most of my inspiration from books.  I find that if I am struggling there is always something I read in a book that helps me. 
My co-worker, Nancy, brought me a book called "Bye Bye, Ta Ta".  It is about a woman who is living with Stage 4 cancer.  Since I have had cancer twice and the doctor tells me that there is a 40% chance that it will return again I have been trying to focus on the 60% chance that the cancer WON'T come back.  That is not always easy.  So I was reading this book and once again there was something in it that was exactly what I needed at this time.  Here it is and what follows each point is how I feel or how I am doing with it.

You waste your cancer:
1.  If you do not believe it is designed for you by God. - I believe that there is a reason for everything.
2.  If you believe it is a curse and not a gift. - I try to believe it is a gift to help me.
3.  If you seek comfort from your odds rather that from God. - I am working on this.
4.  If you refuse to think about death. - I am not afraid to die...I just want it to be alot father away.
5.  If you think that "beating" cancer means staying alive rather than cherishing Christ. - Not there yet.
6.  If you spend too much time reading about cancer and not enough time reading about God. - Failing.
7.  If you let it drive you into solitude instead of deepen your relationship with manifest affection. - I like to think that I speak a little nicer and am not so quick to judge now.
8.  If you grieve as those who have no hope. - I have hope.
9.  If you treat sin as casually as before. - Failing.
10.  If you fail to use it as a means of witness to the truth and glory of Christ. - Failing.

Really it isn't the book that gives me what I need when I need it.  God finds ways to give us what we need.  Whether it's thru books or music.....He always finds a way.  We just have to be open to them.

Ooo, Ooo that smell.

If you've never had to pack a wound you may not understand this post. When I first came home from the hospital after the BMX surgery I had drains in my body to help the wounds ooze (for lack of a better word) and ultimately heal.  By the time I went back to the doctor to have the drains removed I was sick (and I mean physically so) of the smell of those drains.  I had hoped I would never have to smell that odor again.  Apparently, the inside of the body smells like those drains.  Now that I am having to pack these wounds I am having to smell that smell again.  And it is grossing me out.  Please heal me soon, Lord!  If only so I don't have to smell that smell.
Now that anyone reading this is grossed out too.....sorry about that but I write so I don't go nuts......other than getting tired so easily I am doing OK.  Now that it doesn't look like I can make my wound really any worse I am working on my stamina.  It will take a while to get back to where I was.....which wasn't exactly in great shape to begin with.
Anyway, I am trying to keep a good attitude.....but some days it is hard.

What the oncologist said.

Finally went to see the oncologist in Chapel Hill and hear what he had to say.  Basically he said chemo would not benefit me unless I just wanted to do it.  Uh.....NO!  Been there, done that.....hated it.  He did tell me something that I didn't realize.  Because I had a local recurrence within 5 years there is a 40% chance that the cancer will return again.  It won't recur in the breast tissue but it would be somewhere else in the body.  However, that being said.....that means there is a 60% chance that it won't come back, right?

This is pretty gross!

Went to see the plastic surgeon yesterday and he didn't like the way my abdominal incision was healing so he cut it open and scooped out the dead skin.  Now I have to pack it with wet gauze and cover it with dry gauze.  That has to be done twice a day.  I have to say it is kinda gross.  I won't go into more detail than that. 
The doctor has written a note to keep me out of work until further notice.  He says it will take at least a month to heal.  I am still hoping to be back at work at the end of April but Tom doesn't want me to go back until I am totally healed.  I am unsure if work would even let me come back with restrictions so until I can lift 25 pounds I may have to stay out.
Having an open wound is freaking me out as I want to walk and gain some endurance but am afraid of doing anything that would make the wound worse.
I am highly frustrated.

The damn thing just won't heal

I only had 1 small section of the incision that wouldn't heal and then I stretched too much and opened another small place.  Aaaarrrggghhh!!!  I am at a loss.  Usually I heal very nicely and quickly so this is so unusual for me.  I sit still but as soon as I try to do anything it seems like I make it worse! 
Blaaahhhhh!
On another subject my hamburger bun boobs are settling a little bit....did I say that last post?  And they are healing nicely....go figure.

On the edge

I have been living in frustration and lite depression for the past week.   I had been doing so well and then I had a set back which has hit me pretty hard.  Worrying that my incision will open up at any time has made me have to go back to being very careful and slowed my progress dramatically.  And because I have been unable to do more and get better and better each day I am frustrated which is bringing on the depression.  Tom thinks I just have "cabin fever" but I don't think that's all.  Even when we went out on Sunday it didn't really help.
All that being said it does appear that my incision is doing better and healing a bit more every day.  So I will do my best to be patient (not my strong suit) and wait until it is healed to the point where I can start doing more and more again.  And I will get my Lexapro (happy pills) refilled which should help.

Paying the price

My abdominal incision is pulling apart.  There is a small part of it that looks like it is coming apart.  Tom is a little freaked out about it but he can see it better than I can.  I sent a picture to the doctor but he said to keep neosporin and non-stick gauze on it and take it easy.  No stretching or standing straight up.  So, again, I am back to taking it easy.  One step forward and two steps back......

I overdid it.

On Tuesday I went to the grocery store and overdid it.  Now I am paying for it.  I lifted items into the cart and then into the car with reckless disregard for how much they weighed.  Note to self:  There is a reason the doctors tell you not to lift more than 8 pounds.  I was so sore on Wednesday but walked the dog anyway and now my abdominal incision is paying the price.  It is "angry" and red and weepy.  I hope I have not damaged it.  I emailed the nurse with my symptoms and am waiting to hear from her.  I pray that I won't have to drive to Chapel Hill.
Well, the nurse just called back and said keep doing what I am doing with neosporin and if it starts looking worse then call them and they will put me on oral antibiotics.
So today I am taking it easy, watching ACC Basketball Tourney and will do minimal activities to try to let this thing rest and get better.
I'm learning that I don't follow directions very well.

Getting better every day

Today is 18 days post op and I did laundry!  I put clothes away and did laundry and even cooked part of dinner.  It feels good to be doing something and not having to ask everyone to do everything for me.  I get tired very easily though.  I have to sit and take frequent breaks but its all good.
My body is sad.  I have finally looked at it in the mirror and it doesn't look a thing like my old body.  My breasts are flat (which I don't mind) but pushed under my arms and my abdomen is flatter that it's been in years.  Weird.  But mostly it just doesn't look like me.  I laughed the first time I saw it but now it just makes me sad.  But generally I am OK.  I needed to do what I did to rid my body of the beast.  And for all intents and purposes the beast is gone.  There is never any guarantee that the beast is gone for good but I have faith that God has a plan that is way smarter than mine.  So I just live...and see what happens.

No more drains!

Yesterday I went to see the Plastic Surgeon for the first post-op visit.  He said I am doing great!  He had the nurse pull all the drains which I could have kissed him for and if he hadn't done it I probably would have cursed him for it.  Those drains were awful.  We had to "strip" them meaning pulling on them while mashing them flat to get everything pushed out of them and then we emptied them and that smell......ugh...if I never smell that smell again it will be too soon.  Even now when they are out I still smell where they were and I thought the shower would take care of that smell but it didn't.  I know it will go away.  Soon, please!
The doctor also said that the swelling would be here for a while.  If it weren't for the swelling then I might feel really human.  He said that it would be a couple of months before I really feel more normal anyway.  But he was pleased with my progress.  I am pleased also.  I can get in and out of the bed by myself now....progress!  I can use the bathroom by myself...progress!  I can walk without the walker...progress!  I can walk back and forth to the mailbox....progress!
I will not rush myself back to work.  I will take my time and get well....physically, spiritually and psychologically.  I have a long way to go.

Pain Management, itching and finally a "POOP".

Stay ahead of the pain was some of the best advice that I didn't take.  Wow, did I pay for that!  So for now, I will be taking all the pain meds, on time, that I am allowed.
Everything has started itching and hurting all at the same time.  I guess nerves are being regenerated so I am getting alot of twinges and burning feelings that give great pain for short periods of time.  I am constantly saying, "Ow" or "Heeeeee" and then a breath like a woman in labor and the pain tends to subside.  Moving one way today might not hurt and moving the same way tomorrow might be so painful that I might cry.  I am already so over the pain.  Ha.....such a long way to go!
Today was Surgery + 7 days and I still hadn't pooped.  Tom made me a cup of coffee this morning and said "This is the magic cup of coffee."  And by golly, it was!  I was getting very irritated and being an ornery patient.  Not having a daily constitution for 7 days was not the way to make Wendy a happy gal.
But now it has happened so hopefully things will keep moving.  And when the drains come out and the pain subsides Wendy will be a much happier girl!

Bilateral Mastectomy with DIEP flap reconstruction.....

Let's see if I can explain what this is.  They opened my breasts up, scooped out all breast material and then opened up my tummy and scooped out the fat there and moved it up to the boobs.  Then formed mounds, attached blood vessels, etc., and then closed up boobs. 
I went in the hospital on Thursday, 2/16 and surgery began around 7:30AM.  I was in recovery by around 6pm that night.  Stayed in Surgical ICU until Saturday at around 1pm and then was moved to a regular room.  I was on liquids from recovery until lunchtime on Sunday and went home right after lunch on Monday.
Hardest part so far has been:  no pooping and feeling bad because of it, lots of pain where drains are, emptying drains and the smell, getting up and down off the toilet without using the arms for pushing, and generally feeling like "What the hell did I just do?"
Last night I cried for the first time.  I had teared up but never really cried before.  Before surgery I kept giving over my fear to God and then snatching it back like I could do a better job with it.  I know, "Doh!"  But God is forever doing special things for me that I either don't recognize or don't understand.  And He always puts people in our lives at the right time.  While awaiting surgery several people came in and spoke with Tom and I but it was only when Stella came in that I finally handed the fear over to God and left it with Him.  I'm not sure what it was about Stella but she felt like she was from God Himself.  That was when I teared up.
But last night was the crying.  I cried and cried and cried.  And it actually made me feel better and stronger for it.  And today has been a good day.
This too shall pass and I know it.  I will have good days and bad days as all people do.  I'll try to post what's happening.  Thanks for letting me vent here.  It really is cathartic.

Shoulda taken 2 happy pills today!

I am a bit nervous today as tomorrow is my surgery.  And I am finding that I am a bit "short" with everyone.  I am trying so hard to be brave and for the most part I am brave.  It's so weird but I am totally OK with the surgery until I begin to think of lying there in a room full of people totally naked and then the cutting begins.  That's when I start freaking out.  So I try not to think about that part...only the part where I fall asleep and then wake up all done.
God will hear from me a lot during these last hours before surgery.  Prayer usually calms me....I hope today is no different.

I am sooooo not strong.....

In fact, currently, I am a bundle of nerves.  The closer it gets to this surgery that will put me down for weeks the more bundled my nerves get.  In fact, I had a moment yesterday when I decided that I just was not going to do it.  I didn't have an alternative but  knew that I didn't want to have this surgery.  And then my sane mind took over and asked me, "If you don't do this then what will you do?"  I had no answer.  So I decided to do the surgery. 
I feel sure that between now and next Thursday I will waffle many times.  But finally I will do what I should do and remove the tumor.
I am such a whimp.

Sometimes reading too much is not good.

At least this is what Tom tells me.  I, on the other hand, am a planner which means I need to know exactly what I am in for and how I need to prepare for the surgery coming up.  So I've read hundreds of posts about BMX and DIEP reconstruction from my peeps at Breastcancer.org and it has been helpful and terrifying.
The closer I get to surgery the more terrified I am.  I continue to pray and that calms me but as soon as I "take back my problems from God" the anxiety begins again.  I think about drains, and pain and constipation.....oh my!  I know I will get through it and will ultimately forget the pain, etc., but for now I am overwhelmed.  I know....this too shall pass.

Am I selfish or crazy?

Yesterday was an especially hard day for me.  After speaking to Dr. Huffman about the Her2 status and him telling me he wants to do Femara and Herceptin after surgery then I went to the Internet and started reading about the side effects of these drugs.  The are very bad, very expensive drugs.  I don't want to take them.  So I started thinking about quality of life vs. quantity of life and I have always said I'd rather live a short life and have fun than live a long life suffering.  Tom's sister prolonged her life with all kinds of trial drugs and she suffered greatly.  But she did it to spend as much time as she could with her children.  I have no children.  But I have Tom and would it be selfish of me not to do everything I can to be around with him so we can grow old together?  The person left behind when someone dies is the person that suffers.  It's not the one that dies.
I finally talked to Tom last night about how I was feeling and the great thing about him is he doesn't try to influence me in any way.  He gives me his opinion but lets me make the decision.  I told him about being selfish and if I didn't take these drugs then I would have to do 1 of 2 other things.  I would either have to dramatically change my lifestyle.....no alcohol, lose weight (which I'd like to do anyway), eat only fruits and vegetables for the rest of my life, exercise regularly (which again wouldn't be that bad of a thing).....but Wendy would become a very sad girl.  OR, I would have to sit around doing what I do now and wait until the Beast came back.....and it most likely would.  Whatever is in my body letting the Beast thrive will stay there unless I drastically change things.  But I don't know if I am willing or even able to do this.  That's where the selfish part comes in.
I am not afraid to die.  Death is a part of life.  I just didn't think it might be so soon.
I am not giving up, folks.  I am merely weighing everything that life has thrown at me recently.  So I will have surgery, we will retest the tumor and go from there.  Until then I place it in God's more than capable hands.

I am a legitimate freak of nature

So I had a second opinion yesterday. It was with my former oncologist. He told me something that I did not know. It appears that my biopsy had two different labs test it. One lab found ER 1% +, PR-, and Her2-. The other lab found ER 13%+, PR-, and Her2+. He said that happens sometimes. So what he wants to do is to go ahead with the surgery and then afterwards, unless they find positive nodes, he wants to forego chemo but start Femara and possibly Herceptin.

So I guess I'm no longer in the TriNeg group...so weird how things can change. I asked him if this was a new primary and he said probably. Maybe little guys from last tumor but histologically speaking they are different.

Then I find out that unless they verified the Her2 status that it could be false - or +...either way.  I would rather not be Her2+...this is: HER2 protein overexpression can result in malignant transformation of cells.  It is a more agressive type of tumor and with being a grade 3 anyway.....aggression is its middle name.

So I don't know what to think.  One minute I believe that I am triple negative again and then they start throwing all these other acronyms at me along with names of drugs that I have never had to deal with and know nothing about.  I feel like a freak.

So it appears that my surgery will be on 2/16/12.  I am ready.  I will lay it all in God's hands and He will do His will.

 

I hate this disease.

I have been thru this before so I kind of know what to expect and how to feel about what is happening to me. I have a co-worker who just had a partial mastectomy and now has 8 months of chemo and radiation to look forward to.  My heart breaks for her.  You are plugging along thru life and then one day "BAM", your life is never the same again.
In some ways it can be better if you open yourself to what having cancer can teach you about life and the things that are really important.  It can make it worse because you never feel safe again.  You are always looking over your shoulder waiting on cancer to strike again.  Even if you let it go and live your life free from worry the nag of it never completely goes away.
So, here it is again for me, my co-worker is suffering from it, and really we all know someone that has had it.  It is the beast.  I hate the beast.

Still waiting for something or other

A lot has happened in the past couple of weeks.  I have seen so many doctors I am beginning to have "white coat syndrome".  I have had a sentinel node biospy that didn't take a node.....interesting how that was explained to me.  I have been told that I need chemo and then told that I don't need it. 
And now I am waiting for a date for surgery.  I have settled on a bilateral mastectomy with a DIEP "free flap" reconstruction.  The surgery will last around 8-12 hours and I will be in the hospital for around 5 days, two of which will be spent in ICU.  Then 6-8 weeks of recovery.  I plan on taking my time getting back to work.
It sounds rough but I am pretty strong and have alot of faith that God will take care of me during it all.  Now we just need to get Tom healthy enough to take care of me.
Life is what happens when you're planning other things.  Peace.

If the cancer doesn't kill me the waiting will!

Since finding out I have another breast tumor that is confirmed to be cancer I have been wrestling with where to have the surgery, etc.  Went to UNC because Tom really wanted me to and liked the surgeon and other docs and nurses that we met.  Dr. Amos, the breast surgeon, ordered a CT scan for me to rule out cancer in the lungs, liver or brain.  Bone scan was clear!  I had the CT scan on this past Tuesday and it is now Friday and no one has called me with the results.  I emailed one of the ladies that has been helping me with my FMLA paperwork and she forwarded the request to the nurse who takes care of such things.  When I didn't hear from her then I called the Surgery department and left a message for Dr. Amos to call me and let me know the results.  Still nothing.
How hard is it to pick up the phone and say "All clear, Wendy"...which then leads me to think that it might be bad news and they want to give it in person instead of over the phone?  Aaarrrggghhh!!!